I just realized that I have not posted anything to this blog in 10 days. Sorry about that. But the Christmas Holiday season has pulled me away from blogging to spend time with others.
I love the Christmas Holiday season. I love getting together with family and friends. And I am blessed that I have been able to do that. I loved stopping by a new neighbor to drop of a gift and staying for tea and cookies. I loved going out to dinner with my cousins and having some fried zucchini flowers. They reminded me of my Aunt Dora who I miss so much. I loved seeing my brother-in-law and catching up on the latest news. I loved seeing so many beautifully decorated homes especially in the snow. I loved seeing my niece and her family. I feel my sister present when we play with my 2 year old great nephew. I loved that my husband and I were able to spend time with my son, daughter, son-in-law and grandson. My how JT has grown.
But the best part was celebrating the birth of Christ at Vigil Mass singing with my family - "Joy to the World"!
Dee
Every Day is a Blessing!
Thursday, December 27, 2012
Monday, December 17, 2012
A pathway and chemo resistance
Continued research by Dr. Joanne Weidhaas has resulted in a recent journal article that further establishes the KRAS gene mutation as a predictor of poor outcomes and chemotherapy resistance for women with epithelial ovarian cancer.
Let's step back a bit.
The KRAS gene is the "v-KI-ras2 Kirsten rate sarcoma viral oncogene homolog". So glad they use the KRAS abbreviation. It is also know as an oncogene because a change in its makeup can cause a cell to become cancerous.
The KRAS gene produces the KRAS protein which controls cell division. It is a part of the signaling pathway RAS/MAPK . The protein signals whether or not the nucleus should divide or not.The KRAS protein acts like an on off switch . It is turned on when it binds with the molecule GTP. When it converts GTP to GDP it is turned to an off position .
In the article
"A KRAS variant is a biomarker of poor outcome, platinum chemotherapy resistance and a potential target for therapy in ovarian cancer"
The authors found that post menopausal women with the Epithelial Ovarian Cancer and this gene mutation were more likely to be platinum resistant and to die from the disease. This information certainly opens the door to developing new treatment options for women with the mutation.
Dee
Every Day is a Blessing!
Sources :Genetics Home Reference a service of the US National Library of Medicine
Let's step back a bit.
The KRAS gene is the "v-KI-ras2 Kirsten rate sarcoma viral oncogene homolog". So glad they use the KRAS abbreviation. It is also know as an oncogene because a change in its makeup can cause a cell to become cancerous.
The KRAS gene produces the KRAS protein which controls cell division. It is a part of the signaling pathway RAS/MAPK . The protein signals whether or not the nucleus should divide or not.The KRAS protein acts like an on off switch . It is turned on when it binds with the molecule GTP. When it converts GTP to GDP it is turned to an off position .
In the article
"A KRAS variant is a biomarker of poor outcome, platinum chemotherapy resistance and a potential target for therapy in ovarian cancer"
The authors found that post menopausal women with the Epithelial Ovarian Cancer and this gene mutation were more likely to be platinum resistant and to die from the disease. This information certainly opens the door to developing new treatment options for women with the mutation.
Dee
Every Day is a Blessing!
Sources :Genetics Home Reference a service of the US National Library of Medicine
Friday, December 14, 2012
A Friendship Ended Too Soon
At 8:30 am this morning I got a phone call from my friend's niece. She called to tell me that my friend had passed. It has taken me all day to be able to write yet another post about a woman and friend from my support group who lost her life to cancer.
Pam was a special lady. She was good friend. We met at the very first meeting of the Gynecologic Cancer Support Group at the Cancer Institute of New Jersey (CINJ) back in 2007. We hit it off right away. We were diagnosed less than a year apart with stage III ovarian cancer.
She loved to travel and so did I. In 2009, we both went on cruises to Alaska. When she came back she gave me tips on what to bring. It seems that going on a trip after treatment cycles was our pattern.
She loved Jimmy Buffet and would travel all over to go to a concert. She was a member of the Parrot Heads. Pam and the group put together a fundraiser ( I think it was 2008) and the money went to CINJ.She held another fundraiser at Leggett's and that is when I got to meet so many more of her family.
We got together at the Ovarian Cancer Survivors Course in New York City at NYU. This time our husbands came along and they got to meet each other. Nick and Ed would attend many ovarian cancer events with us especially if they knew the other was going.
We both attended the CINJ Foundation dinner to honor our gynecologic oncologist, Dr Darlene Gibbon.
When I attended conferences Pam would always ask me what treatments were in the works for us. Then we would both lament how long it took to get the treatment from clinical trials to patients. Both Pam and I took part in clinical trials. If only more women like Pam took part in clinical trials researchers would get the answers to the many questions they have about cancer.
Pam was always ready to help the women in our group especially with computer issues.She was our resident techie. She helped a few woman learn software and fixed internet and software issues.
We also served on the Patient Advisory Board of CINJ together. Once again Pam was ready to help in any way she could. Pam was a real driving force behind the LiveSTRONG Survivor's Day quilt that now hangs in the lobby of CINJ. She showed up at one of our meetings with a bag of quilt squares and fabric and the ball got rolling.
Pam and I attended many of the same ovarian cancer awareness events over the last few years- the Kaleidoscope of Hope Avon Walk and the Teal Tea Foundation's Tea every May.
During the past year when Pam was in treatment I would frequently pick her up at CINJ at 5pm on the second Tuesday of the month. Off we would head to Panera's on Rt 1 or up Easton Avenue to the chinese restaurant. Sure we talked about check-ups and treatments but that wasn't all. Over the years we became more than just two women with ovarian cancer. We became friends. We got together to chat about what was happening in our lives. We talked about our husbands and families. We shared stories about places we traveled to. I remember how excited she was when my grandson was born. Then we would head back to CINJ for our monthly group meeting.
I imagined that we would have many more years of friendship but that is not to be. But my memories of this friendship will last forever.
Rest In Peace Pam.
Dee
Every Day is a Blessing. And Pam was a blessing in my life.
Pam was a special lady. She was good friend. We met at the very first meeting of the Gynecologic Cancer Support Group at the Cancer Institute of New Jersey (CINJ) back in 2007. We hit it off right away. We were diagnosed less than a year apart with stage III ovarian cancer.
She loved to travel and so did I. In 2009, we both went on cruises to Alaska. When she came back she gave me tips on what to bring. It seems that going on a trip after treatment cycles was our pattern.
She loved Jimmy Buffet and would travel all over to go to a concert. She was a member of the Parrot Heads. Pam and the group put together a fundraiser ( I think it was 2008) and the money went to CINJ.She held another fundraiser at Leggett's and that is when I got to meet so many more of her family.
 |
| Parrot Head fundraiser- Pam, me, Julie, Ann |
We got together at the Ovarian Cancer Survivors Course in New York City at NYU. This time our husbands came along and they got to meet each other. Nick and Ed would attend many ovarian cancer events with us especially if they knew the other was going.
We both attended the CINJ Foundation dinner to honor our gynecologic oncologist, Dr Darlene Gibbon.
 |
| CINJ Foundation Dinner with Rita Kay(left) and Pam(right) |
When I attended conferences Pam would always ask me what treatments were in the works for us. Then we would both lament how long it took to get the treatment from clinical trials to patients. Both Pam and I took part in clinical trials. If only more women like Pam took part in clinical trials researchers would get the answers to the many questions they have about cancer.
Pam was always ready to help the women in our group especially with computer issues.She was our resident techie. She helped a few woman learn software and fixed internet and software issues.
We also served on the Patient Advisory Board of CINJ together. Once again Pam was ready to help in any way she could. Pam was a real driving force behind the LiveSTRONG Survivor's Day quilt that now hangs in the lobby of CINJ. She showed up at one of our meetings with a bag of quilt squares and fabric and the ball got rolling.
Pam and I attended many of the same ovarian cancer awareness events over the last few years- the Kaleidoscope of Hope Avon Walk and the Teal Tea Foundation's Tea every May.
 |
| Teal Tea 2011 |
I imagined that we would have many more years of friendship but that is not to be. But my memories of this friendship will last forever.
Rest In Peace Pam.
Dee
Every Day is a Blessing. And Pam was a blessing in my life.
Monday, December 10, 2012
Ovarian Cancer on ESPN-W
I follow a number of ovarian cancer organizations on Facebook and Twitter. The other day I read a tweet that referred to an article on a site called ESPN-W , an ESPN website for women who love sports. ( I love crew and college football.) What a great way to reach women and raise awareness of ovarian cancer. The title of the article was "Ovarian Cancer an Under the Radar Killer"by Melissa Isaacson. Thank you Melissa for taking the time to highlight ovarian cancer (OC) on this site.
Overall the article did a good job sharing the story of Roni Lemos, describing the symptoms of the disease, reporting the statistics and stressing that women should advocate for themselves when it comes to their health. There are two parts though I want to comment on.
There was a quote made by an NOCC representative- "It's a very sad, sad cancer ". Sure ovarian cancer is sad - for women diagnosed and those who care for them. It is sad for those in treatment and sad when women lose their lives because of ovarian cancer. But honestly, all cancers are sad. And I say that as someone who has dealt with OC and someone who also has had family and friends who were treated or lost their lives to cancer - breast, kidney, brain, liver, testicular, cervical, & prostate.
"It is also an unpopular disease as far as funding goes,... " Over the past 7 + years I don't think I ever heard ovarian cancer described as unpopular before. Is any cancer popular? I assume we can say that breast cancer is popular since in 2011 it received ~ $600 million more funding for research than ovarian cancer. And yes, we should increase OC research funding. I would have liked to have the author provide reasons why more research funding for ovarian cancer is crucial. Funds for OC research could help develop a screening test, gain a better understanding of the paths to developing the disease, to develop more personalized treatment plans, to use the Human Genome project data to develop new treatment options and to develop treatments for women who are battling recurrent disease.
There are reasons why breast cancer gets more research dollars. More women are affected each year by breast cancer than ovarian cancer. And national breast cancer organizations have been raising awareness of the disease and funds for research for a much longer period of time than there have been organizations raising funds for ovarian cancer research. The author did note that breast cancer research can translate to other cancers.
This article was a good place to start the conversation about ovarian cancer among women on this site. I hope the author will follow up with additional information like risk factors and BRCA mutations for her readers.
Dee
Every Day is a Blessing!
Overall the article did a good job sharing the story of Roni Lemos, describing the symptoms of the disease, reporting the statistics and stressing that women should advocate for themselves when it comes to their health. There are two parts though I want to comment on.
There was a quote made by an NOCC representative- "It's a very sad, sad cancer ". Sure ovarian cancer is sad - for women diagnosed and those who care for them. It is sad for those in treatment and sad when women lose their lives because of ovarian cancer. But honestly, all cancers are sad. And I say that as someone who has dealt with OC and someone who also has had family and friends who were treated or lost their lives to cancer - breast, kidney, brain, liver, testicular, cervical, & prostate.
"It is also an unpopular disease as far as funding goes,... " Over the past 7 + years I don't think I ever heard ovarian cancer described as unpopular before. Is any cancer popular? I assume we can say that breast cancer is popular since in 2011 it received ~ $600 million more funding for research than ovarian cancer. And yes, we should increase OC research funding. I would have liked to have the author provide reasons why more research funding for ovarian cancer is crucial. Funds for OC research could help develop a screening test, gain a better understanding of the paths to developing the disease, to develop more personalized treatment plans, to use the Human Genome project data to develop new treatment options and to develop treatments for women who are battling recurrent disease.
There are reasons why breast cancer gets more research dollars. More women are affected each year by breast cancer than ovarian cancer. And national breast cancer organizations have been raising awareness of the disease and funds for research for a much longer period of time than there have been organizations raising funds for ovarian cancer research. The author did note that breast cancer research can translate to other cancers.
This article was a good place to start the conversation about ovarian cancer among women on this site. I hope the author will follow up with additional information like risk factors and BRCA mutations for her readers.
Dee
Every Day is a Blessing!
Wednesday, December 5, 2012
OVA1 Research Results
OVA1 test by Vermillion is a blood test that evaluates whether an ovarian mass is cancerous prior to surgery. OVA1 is FDA approved for that purpose. CA-125 is one of the five biomarkers used in the OVA1 test. The other markers are Beta-2 microglobulin, apoliprprotein A-1, prealbumin, and transferrin. The test results are evaluated using a proprietary algorithm to produce a result. The resulting number is between 0-10.
Recently a study of OVA1 was published in the Journal Gynecologic Oncology .
The study included 494 patients from multiple centers. Blood samples (taken prior to surgery) and physicians risk assessments were correlated with surgical pathology reports.
Ova1 correctly predicted ovarian cancer 91% of the cases of early stage cancer vs 65.7% using CA-125 alone. The OVA1 test was also better at predicting the absence of disease with a negative predicitive vale of 98.1%.
The study concluded that the OVA1 - 5 marker test "demonstrated higher sensitivity and negative predictive value for ovarian malignancy compared to clinical impression and CA125-II in an intended-use population of non-gynecologic oncology practices."
It is a very interesting study.
Dee
Every Day is a Blessing!
Recently a study of OVA1 was published in the Journal Gynecologic Oncology .
Ovarian malignancy risk stratification of the adnexal mass using a multivariate index assay
The study included 494 patients from multiple centers. Blood samples (taken prior to surgery) and physicians risk assessments were correlated with surgical pathology reports.
Ova1 correctly predicted ovarian cancer 91% of the cases of early stage cancer vs 65.7% using CA-125 alone. The OVA1 test was also better at predicting the absence of disease with a negative predicitive vale of 98.1%.
The study concluded that the OVA1 - 5 marker test "demonstrated higher sensitivity and negative predictive value for ovarian malignancy compared to clinical impression and CA125-II in an intended-use population of non-gynecologic oncology practices."
It is a very interesting study.
Dee
Every Day is a Blessing!
Monday, December 3, 2012
Metformin and Ovarian Cancer
A article titled " Metformin intake is associated with better survival in ovarian cancer" was published today in the journal Cancer . Metformin is a drug used to treat type 2 diabetes. The research was done at the Mayo Clinic College of Medicine.
This retrospective study showed that women with epithelial ovarian cancer who were taking Metformin had significantly better survival compared to women with epithelial ovarian cancer who were not taking Metformin. The 5 year disease specific survival for cases vs control was 67% vs 47%.
The conclusion was"The results of this study indicated an association of metformin intake with survival in patients with ovarian cancer. The receipt of metformin was associated with better survival, and the authors concluded that metformin is worthy of clinical trials in ovarian cancer. Cancer 2012. © 2012 American Cancer Society."
This is an interesting line of research and I look forward to seeing the results of future prospective clinical trials. Source : http://onlinelibrary.wiley.com/doi/10.1002/cncr.27706/abstract
Metformin information: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a696005.html
Dee
Every day is a Blessing!
This retrospective study showed that women with epithelial ovarian cancer who were taking Metformin had significantly better survival compared to women with epithelial ovarian cancer who were not taking Metformin. The 5 year disease specific survival for cases vs control was 67% vs 47%.
The conclusion was"The results of this study indicated an association of metformin intake with survival in patients with ovarian cancer. The receipt of metformin was associated with better survival, and the authors concluded that metformin is worthy of clinical trials in ovarian cancer. Cancer 2012. © 2012 American Cancer Society."
This is an interesting line of research and I look forward to seeing the results of future prospective clinical trials. Source : http://onlinelibrary.wiley.com/doi/10.1002/cncr.27706/abstract
Metformin information: http://www.nlm.nih.gov/medlineplus/druginfo/meds/a696005.html
Dee
Every day is a Blessing!
Thursday, November 29, 2012
Proof
I suffer from chemo brain.
Chemo brain has been very difficult at times for me. It has brought me to tears. Sometimes it is knowing there is something, like a specific word, you want to say but your are unable to find that particular word. It is like writing out a recipe and not being able to list the ingredients. You know you need to add flour but the word is not there. So frustrating . I can usually find words to describe what the term or thing is. For flour I would use white fluffy wheat stuff. But the word escapes me.
Sometimes when I am in a hurry I will say or type a sentence that includes a word that makes no sense. Just the other day I texted my niece about Christmas but ended up putting down the word birthday. Weird huh. I didn't catch it. She did. Good thing she understands.
I can be in a conversation and my husband will ask me if I meant to use a word. Many times that is not at all what I wanted to say. At other times my husband or children will graciously finish or find the word for me. Thank goodness. I write notes to myself all the time and will check and double check and triple check what I write here or in e-mails I send out because sometimes the letters are all there but they sure aren't in the correct order. I mix up numbers too. I taught math and computer science before chemotherapy and never made the errors I make now.
I was very happy yesterday to watch a video and read about research on chemo brain at the University of West Virginia that included before, during and after PET-CTs of 115 breast cancer patients brains. The study found that there was significant metabolic changes in the superior medial frontal gyrus and the temporal operculum of the brain. The superior medial frontal gyrus is associated with mental agility, problem solving, sequencing and decision making and the temporal operculum is long term memory.
The researchers are not sure of the mechanics of the metabolic changes but it could be a cytokine response or nerve demyelination.Now all we need are researchers to discover how to reduce this metabolic change for those undergoing chemotherapy.
Sources :
Radiological Society of North America meeting Source reference:
Lagos R, et al "Towards diagnostic imaging of ChemoBrain phenomenon" RSNA 2012; Abstract LL-MIS-TU2A.
Medpage 'Chemo Brain' a Real Thing
Video MSNBC
Dee
Every Day is a Blessing!
Chemo brain has been very difficult at times for me. It has brought me to tears. Sometimes it is knowing there is something, like a specific word, you want to say but your are unable to find that particular word. It is like writing out a recipe and not being able to list the ingredients. You know you need to add flour but the word is not there. So frustrating . I can usually find words to describe what the term or thing is. For flour I would use white fluffy wheat stuff. But the word escapes me.
Sometimes when I am in a hurry I will say or type a sentence that includes a word that makes no sense. Just the other day I texted my niece about Christmas but ended up putting down the word birthday. Weird huh. I didn't catch it. She did. Good thing she understands.
I can be in a conversation and my husband will ask me if I meant to use a word. Many times that is not at all what I wanted to say. At other times my husband or children will graciously finish or find the word for me. Thank goodness. I write notes to myself all the time and will check and double check and triple check what I write here or in e-mails I send out because sometimes the letters are all there but they sure aren't in the correct order. I mix up numbers too. I taught math and computer science before chemotherapy and never made the errors I make now.
I was very happy yesterday to watch a video and read about research on chemo brain at the University of West Virginia that included before, during and after PET-CTs of 115 breast cancer patients brains. The study found that there was significant metabolic changes in the superior medial frontal gyrus and the temporal operculum of the brain. The superior medial frontal gyrus is associated with mental agility, problem solving, sequencing and decision making and the temporal operculum is long term memory.
The researchers are not sure of the mechanics of the metabolic changes but it could be a cytokine response or nerve demyelination.Now all we need are researchers to discover how to reduce this metabolic change for those undergoing chemotherapy.
Sources :
Radiological Society of North America meeting Source reference:
Lagos R, et al "Towards diagnostic imaging of ChemoBrain phenomenon" RSNA 2012; Abstract LL-MIS-TU2A.
Medpage 'Chemo Brain' a Real Thing
Video MSNBC
Dee
Every Day is a Blessing!
Thursday, November 22, 2012
I Am Thankful...
...to be alive!
...for my family and friends.
...for the doctors, nurses and staff of CINJ.
Dee
Every Day is a Blessing.
...for my family and friends.
...for the doctors, nurses and staff of CINJ.
Dee
Every Day is a Blessing.
Sunday, November 18, 2012
LIvES study ‐ GOG 0225
Attention all ovarian cancer survivors.
Here is a clinical trial that I recommend you participate in. It is through clinical trials that we learn more about our disease, ways to possibly prevent it , reduce our risk for it or treat it.
GOG 0225
Lifestyle for oVarian Cancer Enhanced Survival also called the LIvES Study is supported by the National Cancer Institute and the Gynecologic Oncology Group and is a multi-center study. This phase III trial will recruit 1070 ovarian cancer survivors . The primary objective is:
" To determine if patients who are disease-free after successfully completing primary and potential consolidation/maintenance therapy for stage II, III, or IV ovarian epithelial, fallopian tube, or primary peritoneal cancer and who are randomized to a healthy lifestyle intervention, will have significantly increased progression-free survival when compared with similar patients who are randomized to usual care."The study will also assess nutrients in the participants blood.
The study is open to:
Ovarian , fallopian and primary peritoneal cancer survivors stages II-IV
Women who have completed treatment within the last 6 weeks to 4 months for initial diagnosis of the disease
Women with no evidence of persistent or recurrent disease
Women with no history of another chronic illness
Women willing to fill out questionnaires and be contacted to answer questions by phone
You will:
Be assigned to either the control or intervention group
Be asked to modify your diet and physical activity if assigned to the intervention group
Be asked to fill out a daily Lifestyle Journal if assigned to the intervention group
Participate for 24 months
Fill out a questionnaire 4 times, provide blood 4 times and wear a pedometer
Be available for telephone coaching 22- 33 times over the 2 year time period
Click here for complete information on the NCI site.
At the ASCO annual meeting I attended this year I heard a talk about a similar study for breast cancer patients and am happy to see a study being run for ovarian cancer. If I qualified (I don't because I had a recurrence and out of treatment for too long) I would definitely like to participate.
Please check the site and see if you are eligible.
Dee
Every Day is a Blessing!
Here is a clinical trial that I recommend you participate in. It is through clinical trials that we learn more about our disease, ways to possibly prevent it , reduce our risk for it or treat it.
GOG 0225
Lifestyle for oVarian Cancer Enhanced Survival also called the LIvES Study is supported by the National Cancer Institute and the Gynecologic Oncology Group and is a multi-center study. This phase III trial will recruit 1070 ovarian cancer survivors . The primary objective is:
" To determine if patients who are disease-free after successfully completing primary and potential consolidation/maintenance therapy for stage II, III, or IV ovarian epithelial, fallopian tube, or primary peritoneal cancer and who are randomized to a healthy lifestyle intervention, will have significantly increased progression-free survival when compared with similar patients who are randomized to usual care."The study will also assess nutrients in the participants blood.
The study is open to:
Ovarian , fallopian and primary peritoneal cancer survivors stages II-IV
Women who have completed treatment within the last 6 weeks to 4 months for initial diagnosis of the disease
Women with no evidence of persistent or recurrent disease
Women with no history of another chronic illness
Women willing to fill out questionnaires and be contacted to answer questions by phone
You will:
Be assigned to either the control or intervention group
Be asked to modify your diet and physical activity if assigned to the intervention group
Be asked to fill out a daily Lifestyle Journal if assigned to the intervention group
Participate for 24 months
Fill out a questionnaire 4 times, provide blood 4 times and wear a pedometer
Be available for telephone coaching 22- 33 times over the 2 year time period
Click here for complete information on the NCI site.
At the ASCO annual meeting I attended this year I heard a talk about a similar study for breast cancer patients and am happy to see a study being run for ovarian cancer. If I qualified (I don't because I had a recurrence and out of treatment for too long) I would definitely like to participate.
Please check the site and see if you are eligible.
Dee
Every Day is a Blessing!
Thursday, November 8, 2012
Getting Around to Sharing Good News
Yesterday, NJ had a Nor'easter. They named this storm Athena. Athena is the the goddess of war and wisdom. She dropped about 7 inches in my town and 15 miles east of me they had 13 inches. So I think she should be the goddess of Nor'easters too. Between Sandy and Athena these past eleven days sure have been interesting.
Interesting on the ovarian cancer front for me too. Sandy and Athena distracted me so much that I forgot to post some good news.
The results of my CT came back the Thursday before the hurricane . There was no evidence of disease. Hurray! I am now 4 years out from my recurrence. Even though my CA125 was 17.6 , higher than it was when I recurred, I did not have active disease. Boy that CA-125 bouncing around sure does make me anxious.
The Friday before the hurricane, I had an appointment with a gastoenterologist/surgeon to try to figure out what was causing this uncomfortable feeling I was having in my abdomen. My internal organs have been moved around a lot twice and I know there is scar tissue but both my gyn-onc and I felt we should check it out further. After an exam the doctor said everything felt normal and recommended I increase my fiber intake. No more Rice Krispies or tea and toast in the morning for me I've started eating high fiber cereal. Those Fiber One cereals and All Bran are not too bad when you add fruit. I've even added the All Bran to yogurt for a snack.
The doctor also told me to loose weight. I gained over twenty pounds since my recurrence. So I will need to get to work on that by walking a bit more and eating less and possibly signing up for Weight Watchers again. Lastly the doctor recommended a colonoscopy. It has been 5 years since my last one so I will have a colonoscopy in January. You know even cancer survivors need to do those routine tests too .
Last piece of good news is the response I got after responding to a tweet calling for bloggers for a redesigned Society of Gynecologic Oncologist website. I'm honored and thrilled to have been accepted to post a few times a month. I'll let you know when my first post appears.
Dee
Every Day is a Blessing. Blessed by all the repairmen, emergency workers from NJ and states beyond who are helping to restore power, cable, etc to the state.
Interesting on the ovarian cancer front for me too. Sandy and Athena distracted me so much that I forgot to post some good news.
The results of my CT came back the Thursday before the hurricane . There was no evidence of disease. Hurray! I am now 4 years out from my recurrence. Even though my CA125 was 17.6 , higher than it was when I recurred, I did not have active disease. Boy that CA-125 bouncing around sure does make me anxious.
The Friday before the hurricane, I had an appointment with a gastoenterologist/surgeon to try to figure out what was causing this uncomfortable feeling I was having in my abdomen. My internal organs have been moved around a lot twice and I know there is scar tissue but both my gyn-onc and I felt we should check it out further. After an exam the doctor said everything felt normal and recommended I increase my fiber intake. No more Rice Krispies or tea and toast in the morning for me I've started eating high fiber cereal. Those Fiber One cereals and All Bran are not too bad when you add fruit. I've even added the All Bran to yogurt for a snack.
The doctor also told me to loose weight. I gained over twenty pounds since my recurrence. So I will need to get to work on that by walking a bit more and eating less and possibly signing up for Weight Watchers again. Lastly the doctor recommended a colonoscopy. It has been 5 years since my last one so I will have a colonoscopy in January. You know even cancer survivors need to do those routine tests too .
Last piece of good news is the response I got after responding to a tweet calling for bloggers for a redesigned Society of Gynecologic Oncologist website. I'm honored and thrilled to have been accepted to post a few times a month. I'll let you know when my first post appears.
Dee
Every Day is a Blessing. Blessed by all the repairmen, emergency workers from NJ and states beyond who are helping to restore power, cable, etc to the state.
Sunday, November 4, 2012
A New Normal For My State
This has been one heck of a week thanks to Sandy. Since I was five years old I have spent time each summer at the Jersey shore, Cape May, Wildwood, Atlantic City, Long Beach Island ( lots of celebrations and Memorial Day weekends at my cousin’s home) , Pine Beach ( my family owned a home there for a few years in the ’70’s), Ocean Beach (my brother -in-law and friends have homes there) , Point Pleasant, Seaside, Asbury Park, Belmar ( my in-laws had an apartment there on 9th Avenue and my kids grew up going to the beach there), Avon, Bradley Beach and Long Branch. Seeing the devastation and loss of landmark parts of my state caused by Sandy is very upsetting. I have friends and relatives still without power almost 7 days later and there are gasoline lines in many areas of the state. There is also significant damage in NYC, Staten Island and Long Island and most public transportation services are running on modified schedules or are closed. The Holland tunnel is closed as is the Path train.
But there is also hope. It may take months and years but we will pull together and will rebuild.
Yesterday, I was talking to my friend, N. She is still without power / internet/ cable in Edison and was worried about her home in Lavallette which is sandwiched between the Atlantic Ocean and Barnegat Bay. I looked up her address on Google Crisis Map and was able to tell her that her home was still standing and the sand from the beach had stopped about four houses away from her. She was relieved. Of course we don’t know from the overhead shot if there is flood damage inside the house or if had been shifted off its foundation. But she said to me we will all find a new normal at the shore.
A new normal is just what a person diagnosed with cancer would say. They need to find a new normal after facing a cancer diagnosis and finishing treatment for their disease. Most survivors don't return to the way it was.
The people of my state will need to do the same thing. Find a new normal at the Jersey shore.
Now I'm going to gather up some supplies to donate to those who lost their homes in this storm. I hope my readers will also find some way to help - the Red Cross, Salvation Army , Tunnel to Towers Foundation, Hurricane Sandy New Jersey Relief Fund or another organization of your choice. Thank you from the bottom of my heart.
Dee
Every Day is a Blessing!
Wednesday, October 31, 2012
Hurricane Sandy's Impact on NJ's Cancer Patients
Note: My home has made it through Hurricane Sandy with only minor damage to the roof. We are lucky to have power, internet & cable and our water is drinkable. Most of my relatives who live in various parts of the state of NJ are without power and many without water. I have relatives and friends with homes on LBI, in Seaside Park and Ocean Beach III and Long Branch. Some know their homes are still standing while others have no idea. We try to check out aerial photos for shots of their location since they are unable to get to those locations. I have another friend with a home in Monmouth Beach who had water up to their second floor and the home is now uninhabitable. But every single one of them is alive and safe. Thank God.
Sandy was a huge storm affected almost 1000 miles of the northeast. But Sandy's impact on the lives of cancer patients is far reaching too.
My cancer center, The Cancer Institute of New Jersey(CINJ) is located in New Brunswick, NJ four blocks from the Raritan River. Sandy caused the Raritan River to flood its banks. The city was closed. Even Rutger's University located there is closed. I can count on one hand the number of times Rutgers has closed in its 200+ year history. There is a boil water advisory in affect and only essential and hospital personnel were allowed into the city. Power is out and public transportation is closed down.
Last night on facebook I read this post by CINJ.
"Due to the hurricane, The Cancer Institute of New Jersey will be closed until Monday November 5th. Please share this as we are unable to distribute notification through email and on our website. Patients will be contacted directly. "
Robert Wood Johnson University Hospital RWJUH( located across the street from CINJ and its affiliate hospital) posted this:
"Important Announcement for all UMDNJ staff and patients:
UMDNJ has announced that they are cancelling all outpatient services for October 31, November 1 and November 2.
Patients and staff of UMDNJ should continue to monitor University communications outlets for updates.
"
Sandy was a huge storm affected almost 1000 miles of the northeast. But Sandy's impact on the lives of cancer patients is far reaching too.
My cancer center, The Cancer Institute of New Jersey(CINJ) is located in New Brunswick, NJ four blocks from the Raritan River. Sandy caused the Raritan River to flood its banks. The city was closed. Even Rutger's University located there is closed. I can count on one hand the number of times Rutgers has closed in its 200+ year history. There is a boil water advisory in affect and only essential and hospital personnel were allowed into the city. Power is out and public transportation is closed down.
Last night on facebook I read this post by CINJ.
"Due to the hurricane, The Cancer Institute of New Jersey will be closed until Monday November 5th. Please share this as we are unable to distribute notification through email and on our website. Patients will be contacted directly. "
Robert Wood Johnson University Hospital RWJUH( located across the street from CINJ and its affiliate hospital) posted this:
"Important Announcement for all UMDNJ staff and patients:
UMDNJ has announced that they are cancelling all outpatient services for October 31, November 1 and November 2.
Patients and staff of UMDNJ should continue to monitor University communications outlets for updates.
"
The radiology group , University Radiology Group where I have my scans done posted this:
"Because of storm-related power outages, our offices will be closed Wednesday morning, October 31st until noon. We will be closely monitoring the outage situation during the morning hours. If power is restored to any of our facilities, we will re-open that office Wednesday afternoon. Status updates will be posted to this web site page, Facebook and Twitter when possible. Our staff will also be calling you to reschedule/confirm your appointment. "
Those are pretty dramatic effects of the storm.
I have or should I say had, an appointment for a port flush for tomorrow at 11:30 am. I get one every 6-8 weeks so I have a window in which to get it done. I am not too worried.
But I am thinking about my friends who are in treatment for recurrences. I think of all the cancer patients adults and children in treatment in the region who are missing a dose of chemo or radiation or are unable to get a blood test. Maybe their facility is closed or they can't get to treatment because roads are closed. When Katrina hit New Orleans in 2005 I had just started my chemotherapy. I remember thinking how terrible it would be to miss a chemotherapy treatment.After all I needed to kill this cancer. And here is the same situation happening in my home state. On Sunday morning I had packed some things in case we needed to leave our home. The first thing I took out was my treatment binder - with surgical and CT reports and drug information.
One ovarian cancer survivor I know had an appointment yesterday for a CT scan to see if she was back in remission and done with chemotherapy. She now has to wait. I feel that waiting and not knowing what is going on is one of the hardest things to deal with when diagnosed with cancer.
This storm was unprecedented. I know the hospitals and cancer centers are doing all they can for their patients under the conditions they have experienced.
Back in 2006 I missed two treatments due to low platelets. At first I was upset but I rested, watched TV, painted and was ready to go the next week. So if you are reading this page and are missing a treatment, you may not be able to watch TV if your power is out I just know you will be ok.
Dee
Every Day is a Blessing!
Monday, October 29, 2012
Sandy
Sandy is currently about 250 miles off the coast of New Jersey. Meteorologists expect landfall in Atlantic City less than 100 miles from where I live in Mercer County.
My husband and I are prepared as best we can. We had a run at this preparedness last year during Hurricane Irene. We took in the patio furniture, bought water and food, have batteries and matches and a battery powered radio. Our cell phones are charged.We've gathered up important papers and are ready to take ourselves to the 2nd floor if the retention pond behind our home floods. I am taking pictures and will post after the storm.
The wind is kicking up and we are having some heavy downpours. Right now the power is still on but I am guessing that won't be the case later tonight.
Praying that my family and friends stay safe. Will update when I am able.
Dee
Every Day is a Blessing!
My husband and I are prepared as best we can. We had a run at this preparedness last year during Hurricane Irene. We took in the patio furniture, bought water and food, have batteries and matches and a battery powered radio. Our cell phones are charged.We've gathered up important papers and are ready to take ourselves to the 2nd floor if the retention pond behind our home floods. I am taking pictures and will post after the storm.
The wind is kicking up and we are having some heavy downpours. Right now the power is still on but I am guessing that won't be the case later tonight.
Praying that my family and friends stay safe. Will update when I am able.
Dee
Every Day is a Blessing!
Wednesday, October 24, 2012
"The c Card and Me" - a review
In the past 7 years as a cancer survivor, I've read a number of books on cancer, how to survive cancer and cancer survivor stories. Some like " The Emperor of All Maladies ", "The Immortal Life of Henrietta Lacks" and " The Light Within~The Extraordinary Friendship of a Doctor and Patient Brought Together by Cancer" were outstanding. I learned from them. Or as I read them it was like being in my support group. Someone understood me and what I was going through.
Other books I read though didn't offer me anything I didn't already know. They seemed to be too negative about the situation ( not that having cancer isn't tough) and offered me no hope.Or the authors just seemed to spend time talking about how great an experience it was for them without being realistic about those tough decisions that need to be made. Or they included experiences I didn't have or situations I would never put myself in.
When I first heard about the book "The c Card and Me" a few weeks ago I wondered how helpful the book would be.
So I received a copy and over the past two days I read the book written by Stage IV cancer survivor , Ali Gilmore. Ali 's advice is right on and how she delivers it mimics how the ladies in my support group talk to each other- sometimes firm, many times with humor and always with compassion.
The book title uses a little c because "Cancer is no more than a bully...refuse to give it credence... I use a lowercase letter, I imagine it shrinking in strength.". Ali offers advice about how to ask questions and how useful a port is. I had some pain with my initial port which differs from Ali but people are different and respond to pain and treatments differently. The book describes the importance of hydration, how to ask for help with things around the house as well is with those pesky insurance issues as well as other issues important to cancer patients . The book offers hope too with a chapter "Do What you Love and The Healing Will Follow".
I highly recommend this book for the newly diagnosed or currently in treatment. Go to Amazon and order yourself a copy.
For me I wish I could meet Ali Gilmore. I think we would have some great, and funny conversations. Wonder how she feels about IV poles?
Dee
Every Day is a Blessing!
Other books I read though didn't offer me anything I didn't already know. They seemed to be too negative about the situation ( not that having cancer isn't tough) and offered me no hope.Or the authors just seemed to spend time talking about how great an experience it was for them without being realistic about those tough decisions that need to be made. Or they included experiences I didn't have or situations I would never put myself in.
When I first heard about the book "The c Card and Me" a few weeks ago I wondered how helpful the book would be.
So I received a copy and over the past two days I read the book written by Stage IV cancer survivor , Ali Gilmore. Ali 's advice is right on and how she delivers it mimics how the ladies in my support group talk to each other- sometimes firm, many times with humor and always with compassion.
The book title uses a little c because "Cancer is no more than a bully...refuse to give it credence... I use a lowercase letter, I imagine it shrinking in strength.". Ali offers advice about how to ask questions and how useful a port is. I had some pain with my initial port which differs from Ali but people are different and respond to pain and treatments differently. The book describes the importance of hydration, how to ask for help with things around the house as well is with those pesky insurance issues as well as other issues important to cancer patients . The book offers hope too with a chapter "Do What you Love and The Healing Will Follow".
I highly recommend this book for the newly diagnosed or currently in treatment. Go to Amazon and order yourself a copy.
For me I wish I could meet Ali Gilmore. I think we would have some great, and funny conversations. Wonder how she feels about IV poles?
Dee
Every Day is a Blessing!
Tuesday, October 23, 2012
Hershey Chocolate Syrup and my Cancer Zone
Today I had yet another CT scan.It has been 7 months since my last one but since my CA-125 has risen to a number higher than it was when I recurred back in 2008 my gyn-onc and I decided to check things out. Of course it waited until after I did what I call my Fall Road Trip.
The Trip included a stop to see my son in Alabama where he is a graduate student working on his PhD. Then we were off to Florida for a week at Disney World. The Epcot Food and Wine Festival was taking place so I got a chance to eat food from many different places- Singapore, Australia, Greece , New Zealand and Poland. I also tasted a special Sam Adams brew which was a chocolate bock. We met up with a long time friend of my daughter who happened to be in Florida visiting her dad. And on the way back to New Jersey stopped in North Carolina to visit my husband's brother and his wife.
Since being diagnosed I have felt that instead of buying things I would rather have experiences and share my time with family and friends. This Fall Road Trip was just that.
Last night though I re-entered the cancer zone.
I had picked up my drinks at the radiology office not far from my home before we left on our trip. It is a branch of the office I used to go to in Metuchen. But this would be the first time I would see them for a CT scan. They only had the plain EZ-CAT drink . I prefer to call it Yucky flavor. The receptionist told me something I had not heard these past 7 years. I had heard I could add Crystal Lite to the bottle but she told me I could add Hershey's Chocolate syrup to the drink to help it go down easier. So last night around 8pm I opened the drink bottle and added a good portion of Hershey's syrup. Well, what do you know? It tasted pretty darn good. And I drank it down.
I got up this morning and had to drink the second bottle. So once again I squeezed in some Hershey's. I'm not a big chocolate person in the morning but it sure made the whole process easier.
The CT went smoothly. The nurse at the office, Dawn , found a vein for the IV quickly and painlessly. I think drinking lots of water yesterday helped. I held my breath when the machine instructed and said a little prayer as the machine took it's images.
Now it is just a matter of waiting to see for my doctor to tell me the results. Guess I will be in the cancer zone a little while longer.
Dee
Every Day is a Blessing!
The Trip included a stop to see my son in Alabama where he is a graduate student working on his PhD. Then we were off to Florida for a week at Disney World. The Epcot Food and Wine Festival was taking place so I got a chance to eat food from many different places- Singapore, Australia, Greece , New Zealand and Poland. I also tasted a special Sam Adams brew which was a chocolate bock. We met up with a long time friend of my daughter who happened to be in Florida visiting her dad. And on the way back to New Jersey stopped in North Carolina to visit my husband's brother and his wife.
Since being diagnosed I have felt that instead of buying things I would rather have experiences and share my time with family and friends. This Fall Road Trip was just that.
Last night though I re-entered the cancer zone.
I had picked up my drinks at the radiology office not far from my home before we left on our trip. It is a branch of the office I used to go to in Metuchen. But this would be the first time I would see them for a CT scan. They only had the plain EZ-CAT drink . I prefer to call it Yucky flavor. The receptionist told me something I had not heard these past 7 years. I had heard I could add Crystal Lite to the bottle but she told me I could add Hershey's Chocolate syrup to the drink to help it go down easier. So last night around 8pm I opened the drink bottle and added a good portion of Hershey's syrup. Well, what do you know? It tasted pretty darn good. And I drank it down.
I got up this morning and had to drink the second bottle. So once again I squeezed in some Hershey's. I'm not a big chocolate person in the morning but it sure made the whole process easier.
The CT went smoothly. The nurse at the office, Dawn , found a vein for the IV quickly and painlessly. I think drinking lots of water yesterday helped. I held my breath when the machine instructed and said a little prayer as the machine took it's images.
Now it is just a matter of waiting to see for my doctor to tell me the results. Guess I will be in the cancer zone a little while longer.
Dee
Every Day is a Blessing!
Tuesday, October 16, 2012
Doxil Available
I first wrote about the Doxil Shortage back in November of 2011. It has been a year of anxiety for oncologists and patients.
As of Oct 15, 2012 doctors have full access to Doxil . Janssen the manufacturer issued a statement that you can read in full here.
Hopefully with through the work of ASCO , the FDA and other organizations situations like this will not occur in the future.
Dee
Every Day is a Blessing!
As of Oct 15, 2012 doctors have full access to Doxil . Janssen the manufacturer issued a statement that you can read in full here.
Hopefully with through the work of ASCO , the FDA and other organizations situations like this will not occur in the future.
Dee
Every Day is a Blessing!
Thursday, October 11, 2012
One Less Women of Teal - Rita Kay
When I was in college in the early '70's I met this really awesome woman. She was the Rutgers assistant athletic director. This was the time when the first few classes of women were first accepted into Rutgers College. I was affiliated with Rutgers College while I studied at The College of Engineering ( as it was called then). I was also on the men's lightweight crew team as a coxswain. Ms Thomas felt strongly that the women should have their own team and fought hard to establish a women's team and it happened a few years later. Although I was invited to be part of the newly established women's program I continued with the men's team all four years. I graduated and Ms Thomas stayed on at Rutgers . She played a crucial role in developing some of the best women's athletic programs in the country at Rutgers - from crew to golf to volleyball to basketball, soccer and field hockey.
Then about five years ago at a Gynecologic Cancer Support Group meeting at the Cancer Institute of New Jersey there she was, Ms Rita Kay Thomas. But we were in a different fight this time. We were fighting late stage Ovarian Cancer together. Rita Kay and I were in the same selenium clinical trial so we would compare notes about side effects, low platelets etc and laugh about all those darn Pk blood draws. She wore her signature straw cowboy hat to meetings. Sometimes she would add a long green wig or silly glasses with a big nose and bushy eyebrows. She was always ready to use humor to help the other women overcome their nervousness and anxiety.
We both entered remission from the ovarian cancer. But a little while later she faced another challenge, a breast cancer diagnosis. She shared with the group the decisions that she faced about surgery and radiation . We listened, prayed and supported her choices.
When I recurred in 2008 and had surgery on my liver and spleen , she and her partner visited me in the hospital. What did we talk about? Rutgers sports of course and RU football in particular. I was sad I would miss going to a bowl game that year . She told me not to worry because there would be more Bowls to attend in the future. I wasn't feeling too sure of that at the time but Rita Kay was sure.
In 2009 Rita Kay and I were asked to honor our gyn-onc at the CINJ Gala. We both jumped at the opportunity and had a fun time.
I knew when Rita Kay was not able to attend the first Rutgers Home Football Game this year that she was not feeling well. I spoke to her on the phone the next day. I did not want to give up hope that a new drug or procedure or clinical trial might be in the wings waiting to perform its magic on Rita Kay. Just as she had performed magic for so many women athletes at Rutgers. Sadly that was not to be and Rita Kay passed yesterday morning.
I was blessed to have had Rita Kay in my life. I will miss her yellow crocks, her great sense of humor, her straw cowboy hat and her love of a good beer. But especially I will miss my half-time walks at RU homes games from 224 down to section 125 to say hello.
Sadly,
Dee
Every Day is a Blessing!
Then about five years ago at a Gynecologic Cancer Support Group meeting at the Cancer Institute of New Jersey there she was, Ms Rita Kay Thomas. But we were in a different fight this time. We were fighting late stage Ovarian Cancer together. Rita Kay and I were in the same selenium clinical trial so we would compare notes about side effects, low platelets etc and laugh about all those darn Pk blood draws. She wore her signature straw cowboy hat to meetings. Sometimes she would add a long green wig or silly glasses with a big nose and bushy eyebrows. She was always ready to use humor to help the other women overcome their nervousness and anxiety.
We both entered remission from the ovarian cancer. But a little while later she faced another challenge, a breast cancer diagnosis. She shared with the group the decisions that she faced about surgery and radiation . We listened, prayed and supported her choices.
When I recurred in 2008 and had surgery on my liver and spleen , she and her partner visited me in the hospital. What did we talk about? Rutgers sports of course and RU football in particular. I was sad I would miss going to a bowl game that year . She told me not to worry because there would be more Bowls to attend in the future. I wasn't feeling too sure of that at the time but Rita Kay was sure.
In 2009 Rita Kay and I were asked to honor our gyn-onc at the CINJ Gala. We both jumped at the opportunity and had a fun time.
In 2011 the crew teams at Rutgers honored Rita Kay by christening a shell in her name. So if you ever see the Rutgers crews rowing on the Raritan look for the shell named the Rita Kay.
I knew when Rita Kay was not able to attend the first Rutgers Home Football Game this year that she was not feeling well. I spoke to her on the phone the next day. I did not want to give up hope that a new drug or procedure or clinical trial might be in the wings waiting to perform its magic on Rita Kay. Just as she had performed magic for so many women athletes at Rutgers. Sadly that was not to be and Rita Kay passed yesterday morning.
I was blessed to have had Rita Kay in my life. I will miss her yellow crocks, her great sense of humor, her straw cowboy hat and her love of a good beer. But especially I will miss my half-time walks at RU homes games from 224 down to section 125 to say hello.
Sadly,
Dee
Every Day is a Blessing!
Wednesday, October 10, 2012
New Events NOCC (10/13) and Pink Roses Teal Magnolias 10/28
Here are two NJ events to raise awareness of ovarian cancer or funds for research.
Purchase tickets at http://assets.cooperhealth.org/pinkandteal-2012/purchase_tickets.php.
Dee Sparacio
Every Day is a Blessing!
|
Purchase tickets at http://assets.cooperhealth.org/pinkandteal-2012/purchase_tickets.php.
Dee Sparacio
Every Day is a Blessing!
Tuesday, October 9, 2012
Metastasis
I 've been thinking a lot about cancer metastasis and women with metastatic breast and recurrent ovarian cancer.
First, the definition of metastasis is
October is Breast Cancer Awareness month and October 13th is Metastatic Breast Cancer Awareness Day. Some women on twitter, facebook and in blogs (http://womenwcancer.blogspot.com/, http://chemo-brain.blogspot.com/, http://www.tamiboehmer.com/) are upset with all those pink ribbons, pink products and walks and celebrations of survivors when there are women living with metastatic disease. Women with metastatic breast cancer seem to feel forgotten.
If caught early (Stage 0-II) the five year survival rate for breast cancer is 74-93%. ( http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-survival-by-stage ) But some women are initially diagnosed with Stage IV disease where the disease has spread through the lymph system to other organs of the body and their five year survival rate is 15%. For other women their cancer returns a few years after diagnosis and cancer cells are found in their lungs, liver, bone or brain. These women are living with the disease and will be in treatment for life. They are metastatic breast cancer survivors.
The number of women diagnosed with ovarian cancer each year is much less than the number diagnosed with breast cancer ( 226,000 versus 25,000). Big difference. The survival rates for stage III and stage IV ovarian cancer are 35% and 18% respectively. Not such a big difference with our late stage breast cancer sisters. There is no screening test for ovarian cancer so 62% of all women diagnosed with the disease are diagnosed late stage.
Here is the thing, statistics show that 70-80% of women diagnosed with late stage ovarian cancer ( disease beyond the ovary) will recur. Some women will have treatment ( surgery , chemotherapy, radiation) and go into remission. Others never go into remission. These women live with the disease as a chronic illness, they will be in treatment for life. I know a number of women who are living with the disease today trying new chemotherapies and entering clinical trials. And for the rest of us who have recurred once or twice well we worry when our next recurrence will occur. Not so different from our metastatic breast cancer sisters.
I urge breast and ovarian cancer researchers to talk more . Yes I know there are those who research BRCA 1 & 2 mutations and recent studies with basal cell breast cancer (http://www.genengnews.com/gen-news-highlights/aggressive-breast-cancer-may-respond-to-ovarian-cancer-treatment/81247370/) . But there still may be a clue - a pathway, a gene , a protein as to why our cancer cells function as they do.
And to all those metastatic breast cancer survivors, your recurrent OC sisters are with you on the journey.
Dee
Every Day is a Blessing!
Sources :
http://mbcn.org/
http://www.webmd.com/breast-cancer/features/metastatic-breast-cancer-chronic-condition
http://ovariancancer.jhmi.edu/recurrentqa.cfm
http://www.ovariancancer.org/about-ovarian-cancer/statistics/
First, the definition of metastasis is
me·tas·ta·sis
[muh-tas-tuh-sis]October is Breast Cancer Awareness month and October 13th is Metastatic Breast Cancer Awareness Day. Some women on twitter, facebook and in blogs (http://womenwcancer.blogspot.com/, http://chemo-brain.blogspot.com/, http://www.tamiboehmer.com/) are upset with all those pink ribbons, pink products and walks and celebrations of survivors when there are women living with metastatic disease. Women with metastatic breast cancer seem to feel forgotten.
If caught early (Stage 0-II) the five year survival rate for breast cancer is 74-93%. ( http://www.cancer.org/Cancer/BreastCancer/DetailedGuide/breast-cancer-survival-by-stage ) But some women are initially diagnosed with Stage IV disease where the disease has spread through the lymph system to other organs of the body and their five year survival rate is 15%. For other women their cancer returns a few years after diagnosis and cancer cells are found in their lungs, liver, bone or brain. These women are living with the disease and will be in treatment for life. They are metastatic breast cancer survivors.
The number of women diagnosed with ovarian cancer each year is much less than the number diagnosed with breast cancer ( 226,000 versus 25,000). Big difference. The survival rates for stage III and stage IV ovarian cancer are 35% and 18% respectively. Not such a big difference with our late stage breast cancer sisters. There is no screening test for ovarian cancer so 62% of all women diagnosed with the disease are diagnosed late stage.
Here is the thing, statistics show that 70-80% of women diagnosed with late stage ovarian cancer ( disease beyond the ovary) will recur. Some women will have treatment ( surgery , chemotherapy, radiation) and go into remission. Others never go into remission. These women live with the disease as a chronic illness, they will be in treatment for life. I know a number of women who are living with the disease today trying new chemotherapies and entering clinical trials. And for the rest of us who have recurred once or twice well we worry when our next recurrence will occur. Not so different from our metastatic breast cancer sisters.
I urge breast and ovarian cancer researchers to talk more . Yes I know there are those who research BRCA 1 & 2 mutations and recent studies with basal cell breast cancer (http://www.genengnews.com/gen-news-highlights/aggressive-breast-cancer-may-respond-to-ovarian-cancer-treatment/81247370/) . But there still may be a clue - a pathway, a gene , a protein as to why our cancer cells function as they do.
And to all those metastatic breast cancer survivors, your recurrent OC sisters are with you on the journey.
Dee
Every Day is a Blessing!
Sources :
http://mbcn.org/
http://www.webmd.com/breast-cancer/features/metastatic-breast-cancer-chronic-condition
http://ovariancancer.jhmi.edu/recurrentqa.cfm
http://www.ovariancancer.org/about-ovarian-cancer/statistics/
Friday, October 5, 2012
Making Memories
I love making memories. I am not talking about Kodak moments, special vacations or occasions. I feel that the time I have been given since my diagnosis is precious so making memories for me is simply spending time with my family and friends.
When my daughter asked me to visit her in Kansas when her husband was busy traveling for work I jumped at the opportunity. Did I have enough frequent flyer points to make a trip? Earlier this year, American Airlines applied extra points to my frequent flyer account after I experienced 2 delays (totally over 8 hours) in one day. That was a long day and I appreciate that AA gave me the points for my inconvenience. I checked my account and I was thrilled to see that I had collected enough points over the past few years to book a flight. So off I went last week.
Spending time with my daughter and grandson was wonderful. On Saturday we went to a pumpkin patch outside of Topeka and then visited Wamego for OZfest. Wamego is the home of the Oz Museum. If you love the Wizard of Oz , both the movie and book, this is the place to visit.
The rest of the time we spent at home. That was not a problem for me because I was making memories with my grandson. He loved the rocking horse he got for his first birthday. It played two different tunes depending which ear you pushed. So he sat and rocked and I sang along."Ride'm Ride'm Cowboy....."
He and I had fun playing with a drum and assorted musical instruments that his dad had when he was a child. He crawled around, stood up and took many steps while holding on to furniture and his pug dogs. He loved pushing things around. Boxes of food, his box of toys, and his John Deere rider toy, got pushed from one room to the next. I was so happy that Terry's schedule required me to babysit on more than one occasion. I loved it.
One day I took my grandson for a long walk around the neighbor hood and saw these beautiful wild sunflowers.
When my daughter asked me to visit her in Kansas when her husband was busy traveling for work I jumped at the opportunity. Did I have enough frequent flyer points to make a trip? Earlier this year, American Airlines applied extra points to my frequent flyer account after I experienced 2 delays (totally over 8 hours) in one day. That was a long day and I appreciate that AA gave me the points for my inconvenience. I checked my account and I was thrilled to see that I had collected enough points over the past few years to book a flight. So off I went last week.
Spending time with my daughter and grandson was wonderful. On Saturday we went to a pumpkin patch outside of Topeka and then visited Wamego for OZfest. Wamego is the home of the Oz Museum. If you love the Wizard of Oz , both the movie and book, this is the place to visit.
The rest of the time we spent at home. That was not a problem for me because I was making memories with my grandson. He loved the rocking horse he got for his first birthday. It played two different tunes depending which ear you pushed. So he sat and rocked and I sang along."Ride'm Ride'm Cowboy....."
He and I had fun playing with a drum and assorted musical instruments that his dad had when he was a child. He crawled around, stood up and took many steps while holding on to furniture and his pug dogs. He loved pushing things around. Boxes of food, his box of toys, and his John Deere rider toy, got pushed from one room to the next. I was so happy that Terry's schedule required me to babysit on more than one occasion. I loved it.
One day I took my grandson for a long walk around the neighbor hood and saw these beautiful wild sunflowers.
I feel very blessed that I have had the time to make memories.
Dee
Every Day is a Blessing!
Friday, September 28, 2012
A Short Break and the End of an Awareness Month
I am taking a short break from my Ovarian Cancer awareness month postings. I am visiting my daughter and her family and enjoying time playing with my grandson. Right now he is napping.
Isn't he a cutie pie?
Anyway, fall is in the air and the end of Ovarian Cancer month is approaching. This year OC activities have increased throughout the country.There were teal toes,teal shoe laces, teal jewelry, teal buildings, teal walks,teal dinners,teal motorcycle rides. Many women were featured in news articles and research about the genetics of ovarian cancer was reported.Thank you to everyone who participated in any way this month to make women aware.
I'll be back in early October . I'll be doing a post on the connections between breast and ovarian cancer and it is not just BRCA.
Enjoy the rest of September.
Dee
Every Day is a Blessing!
Anyway, fall is in the air and the end of Ovarian Cancer month is approaching. This year OC activities have increased throughout the country.There were teal toes,teal shoe laces, teal jewelry, teal buildings, teal walks,teal dinners,teal motorcycle rides. Many women were featured in news articles and research about the genetics of ovarian cancer was reported.Thank you to everyone who participated in any way this month to make women aware.
I'll be back in early October . I'll be doing a post on the connections between breast and ovarian cancer and it is not just BRCA.
Enjoy the rest of September.
Dee
Every Day is a Blessing!
Sunday, September 23, 2012
OC Awareness #23 - GRACEful Hope, Passionate Advocates
Last night my husband and I had the pleasure of attending the 2nd Annual GRACEful Hope Benefit for Ovarian Cancer Research at the Sport Clube Portugues in Newark, NJ. Over the past year or so I have followed and shared information on my Facebook page about GRACEful Hope events and was honored when they asked me to attend the Benefit and to tell my story.
Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20. But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.
I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.
I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."
What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.
Dee
Every Day is a Blessing!
Before I talk about the event let me give you some background into GRACEful Hope. The Rocha family lost their wife and mother Grace to ovarian cancer in 2008, while their daughter Erika fought her battle with the same disease. They formed GRACEful Hope in memory of Grace and in support of Erika in 2009 with family and friends coming together to enter walks as a team. In 2011, Erika passed away at the age of 20. But the family did not stop their efforts, no they continue to raise awareness and funds for research they hope will one day lead to a cure.
I have been to many ovarian cancer events from teas to walks to galas. And I have told my story many times in different venues, on TV, in a room full of women, at a walk and press conference, but last night was different. As we entered the Sport Clube I felt welcomed, at home and part of a large extended family. The event included a large family meal complete with overflowing platters of Portuguese food. The food was absolutely delicious. There was music and dancing. It was a celebration of the lives of Erika and Grace and all that GRACEful hope had accomplished in the past year. And it was an expression of hope. Hope that the funds raised for the Cancer Institute of NJ would get us closer to finding a cure.
I am always a bit nervous before giving a talk but I had practiced and I knew exactly what I wanted to say about my journey, being in a clinical trial at CINJ and the compassionate care Dr Rodriguez and Gibbon provide. So what happened next surprised me. As I talked about my clinical trial experience and the day I heard "There is no evidence of disease". The room cheered. And I had to pause and compose myself. I know my right hand which was holding the microphone was shaking but I continued talking about my recurrence. I talked about the surgery, treatment, the allergic reaction to carboplatin and how I heard "There is no evidence of disease" and the clapping began again. And I could feel my eyes starting to tear up. And I am sure my voice cracked as ended my speech with "I still have neuropathy in my toes, forget things because of chemo-brain , get anxious waiting for blood tests and scan results but the one thing I know for sure is that with my faith , my family and the doctors at CINJ I can face whatever lies ahead."
What an emotional experience for me. Maybe it was because it was the first time I was telling my story in front of my doctors ( who spoke right before me).Or maybe it was because my husband was in the room. Or I know it sounds corny maybe it was because people who I had never met before showed me so much love and gave me so much hope.
Dee
Every Day is a Blessing!
Friday, September 21, 2012
OC Awareness #21 - HIgh Grade Serous subtypes
The article
appeared in a recent issue of Clinical Cancer Research. Researchers at Dana Farber using a process called single nucleotide polymorphism (SNP) arrays were able to examine single units in the genetic code of tumor cells of high grade serous ovarian cancer ( HGSOC) . HGSOC cells have many genetic abnormalities including missing or extra chromosomes and On examination the HGSOC fell into three groups based on abnormalities or loss of heterozygosity ( LOH). (Heterozygosity is having dissimilar pairs of genes.) One group had a high level of LOH and a loss of chromosome 13. The researchers found that patients in this group were slow to develop resistance to chemotherapy drugs and also were found to have the longest progression free survival.
A good review of the study can be found at
http://www.healthcanal.com/cancers/32333-Researchers-identify-three-subtypes-high-grade-serous-ovarian-cancer.html
Dee
Every Day is a Blessing!
Profiles of genomic instability in high-grade serous ovarian cancer predict treatment outcome
appeared in a recent issue of Clinical Cancer Research. Researchers at Dana Farber using a process called single nucleotide polymorphism (SNP) arrays were able to examine single units in the genetic code of tumor cells of high grade serous ovarian cancer ( HGSOC) . HGSOC cells have many genetic abnormalities including missing or extra chromosomes and On examination the HGSOC fell into three groups based on abnormalities or loss of heterozygosity ( LOH). (Heterozygosity is having dissimilar pairs of genes.) One group had a high level of LOH and a loss of chromosome 13. The researchers found that patients in this group were slow to develop resistance to chemotherapy drugs and also were found to have the longest progression free survival.
A good review of the study can be found at
http://www.healthcanal.com/cancers/32333-Researchers-identify-three-subtypes-high-grade-serous-ovarian-cancer.html
Dee
Every Day is a Blessing!
Thursday, September 20, 2012
OC Awareness #20- Estrogen during Menopause and OC
I receive weekly e-mails from OncologyStat which provides abstracts from oncology journals.
Today there was a summary of an article from the August 28, 2012 British Journal of Cancer ( log-in required for the full article) titled
The study evaluated the use of estrogen by 92,601 post-menopausal women enrolled in the the National Institutes of Health -AARP Diet and Health Study and the incidence of ovarian cancer ( 426) . The Study concluded that long term ( 10+ year) use of unopposed estorgen and oestrogen plus progestins was associated with increased risk of oarian cancer.
Dee
Every Day is a Blessing!
Today there was a summary of an article from the August 28, 2012 British Journal of Cancer ( log-in required for the full article) titled
Ovarian cancer and menopausal hormone therapy in the NIH-AARP diet and health study
The study evaluated the use of estrogen by 92,601 post-menopausal women enrolled in the the National Institutes of Health -AARP Diet and Health Study and the incidence of ovarian cancer ( 426) . The Study concluded that long term ( 10+ year) use of unopposed estorgen and oestrogen plus progestins was associated with increased risk of oarian cancer.
Dee
Every Day is a Blessing!
Wednesday, September 19, 2012
OC Awareness Month #19- This Friday Charmed and N.E.D -the band
I know I've mentioned many different events for ovarian cancer awareness month but here are two more unique ones happening this Friday in NJ. Like shopping and Vera Bradley or Brighton then visit Charmed by Claire's in Cranbury on Friday. Love music and dancing then head over to Englewood and hear N.E.D. play .
Charmed by Claire links with Teal Tea Foundation
Charmed by Claire : Location: 33 North Main Street, Cranbury, NJ 08512
N.E.D - the Band
N.E.D. No Evidence of Disease is a group of 6 GYN ONC's from across the USA who have formed a band, recorded all original music and played around the country to raise awareness and money for women's gyn cancers. They are releasing a documentary about the band and women's gyn cancers following personal stories also call NED. They are hosting a night out this friday 9/21 at 8P at Club 201 in Englewood NJ. It is 10 min. from the GW Bridge for any NY's. The cost has been lowered to $50 and includes an open bar, music and dancing, valet and screening of the documentary. They are amazing in their energy and passion for our cause. So if you are in the tristate area come out and meet your fellow survivors, bring your friends and support the band and women's gyn cancers. The # for tickets is 201 894 3725
Dee
Every Day is a Blessing!
Charmed by Claire links with Teal Tea Foundation
Charmed by Claire : Location: 33 North Main Street, Cranbury, NJ 08512
Date of event: Sep. 21st 2012 Time of event: 10:00 AM-8:00 PM
Charmed by Claire is donating 10% of purchases to the Teal Tea Foundation. Charmed by Claire offers a wide variety of jewelry, handbags, clothing, accessories and many more whimisical gifts. Some of the featured product lines include but are not limited to Brighton, Vera Bradley and PANDORA. Gift certificates are also available for the hard to shop for girl.
For information about The Teal Tea Foundation visit http://www.tealtea.org/index
N.E.D - the Band
N.E.D. No Evidence of Disease is a group of 6 GYN ONC's from across the USA who have formed a band, recorded all original music and played around the country to raise awareness and money for women's gyn cancers. They are releasing a documentary about the band and women's gyn cancers following personal stories also call NED. They are hosting a night out this friday 9/21 at 8P at Club 201 in Englewood NJ. It is 10 min. from the GW Bridge for any NY's. The cost has been lowered to $50 and includes an open bar, music and dancing, valet and screening of the documentary. They are amazing in their energy and passion for our cause. So if you are in the tristate area come out and meet your fellow survivors, bring your friends and support the band and women's gyn cancers. The # for tickets is 201 894 3725
Dee
Every Day is a Blessing!
Subscribe to:
Posts (Atom)