The other day Nick and I went to one of our favorite Chinese food restaurants. At the end of the meal we were given two fortune cookies. Usually the advice is not too memorable and the lucky numbers only lucky if you actually play them. But after reading the fortunes we got this time I thought how applicable they are to a survivor's life- worrying about a recurrence, scans and CA-125 results and what changes caused by cancer will happen next .
"A day of worry is more exhausting than a week of work."
I admit I worry a lot . About my health, and my kids and grandson but I don't think I ever thought of it as exhausting. But you know it really is. When I worry I seem to be more tired. So I think this fortune is pretty accurate. So the next time I start worrying about something I can do nothing about I will try to find some other work to do like practicing with my dog Amber, painting or working in the gardening. They might not be exhausting work but much more productive than worrying.
"Change is not merely necessary to life. It is life."
How true. If my life didn't change because of cancer I am sure it would have changed for some other reason. It might have changed for a good reason or something even worse than a cancer diagnosis - and yes I can think of things that would be worse.
I am not happy to be a cancer survivor. I didn't like loosing my hair or feeling fatigued. And I still don't enjoy having numb and painful toes but I am here enjoying my family and friends and the world around me and that is all that matters.
Have you any fortune cookie advice you would like to share?
Dee
Every Day is a Blessing!
Teal is the awareness color of ovarian cancer. Women of Teal is a play on the words "Man of Steel" used to describe Superman. I have found my fellow ovarian cancer survivors to be the strongest, most helpful women in the world. They are truly Women of Teal!
Friday, June 29, 2012
Wednesday, June 27, 2012
Ovarian Cancer Walks in NJ
In the fall throughout NJ there are a number of walks to raise awareness of Ovarian Cancer or funds for research. Here is some information on the Teal Wings of Hope walk (Sept 1, 2012 ) , the three Kaleidoscope of Hope Foundation Walks( Sept 9,16, 29, 2012) and the Northern NJ NOCC Walk (Sept 23, 2012).
Questions: Please Call Karen Neuls at 609-213-9508 or email karenneuls@tealwingsofhopefoundation.org
Questions: Please Call Karen Neuls at 609-213-9508 or email karenneuls@tealwingsofhopefoundation.org
Location: Veterans Park 2206 Kuser Rd
Hamilton Township, NJ 08690
Course: USATF Certified NJ91004DB
Traffic Free paved roads & trails
Timing: Baldasari & Leestma Race Management
Hamilton Township, NJ 08690
Course: USATF Certified NJ91004DB
Traffic Free paved roads & trails
Timing: Baldasari & Leestma Race Management
Schedule: Registration 7:30 am
5k Race/Walk 9:00 am
Registration at the Games Pavilion
5k Race/Walk 9:00 am
Registration at the Games Pavilion
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
2012 Kaleidoscope of Hope
Annual WALKS!
Join us again this year in our united fight against ovarian cancer by participating in one or more of our 3 walks
Morristown, Sunday, Sept. 9, 2012 at Loantaka Brook Reservation
Lyndhurst, Sunday, Sept. 16, 2012 at Richard W. DeKorte Park
Avon-By-The-Sea, Saturday, Sept. 29, 2012 on the Boardwalk
Click here for more information.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Northern NJ NOCC Mayor's 5K Run/Walk to Break the Silence of Ovarian Cancer
22nd Annual West Orange Downtown Classic
Dee
Every Day is a Blessing!
Lyndhurst, Sunday, Sept. 16, 2012 at Richard W. DeKorte Park
Avon-By-The-Sea, Saturday, Sept. 29, 2012 on the Boardwalk
Click here for more information.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Northern NJ NOCC Mayor's 5K Run/Walk to Break the Silence of Ovarian Cancer
22nd Annual West Orange Downtown Classic
Dee
Every Day is a Blessing!
Monday, June 25, 2012
Lessons My Grandson Taught Me
Sorry for not updating my blog for the past week or so. I am fine. I was busy spending time with family. I traveled to visit my daughter , her husband and my nine month old grandson, in Kansas. We were there to attend my son-in-laws Change of Command Ceremony. He is a captain in the US Army, and took command of Delta Battery part of the 1st Battalion 5th Field Artillery. The 1-5 is the oldest continuously serving active duty unit in the US military. The 1-5 served under the command of Alexander Hamilton during the revolutionary war. It was a beautiful day for the outdoor ceremony and the reception that followed included the most awesome cakes.
On the way there and back we stopped to visit my niece , her husband and son. It was great spending time with them. Their Son D gave me the name GeeGee. He was trying to say Aunt Dee.
At my daughters I got to watch my grandson John ,who is now 9 months old, play, eat, cry and crawl around. He says a few dadas and mamas but as I watched him I saw that he could teach me some pretty important things- without using words.
Nothing is better than being in the arms of your family. ( Mom, Dad, and Grandmas, Grandpas and Uncles, Aunts)
When you are done eating just push that food away.( He would always push the bottle out of his mouth when he was done drinking even if there was more left. Oh, how I wish I could put that one into practice more often.)
Sleep when you need too. Even if it means taking a nap in the middle of the day when lots of people are around.
Your dog is your best friend. ( John has two best friends , Silvio and Walter, by his side.) .
When people take out a camera- smile!
Keep trying even if it means you keep falling down, eventually things will work out.
( John kept trying to pull himself up to a standing position while we were there. He did accomplish it two days after we left.)
John's lessons made me smile. I hope they do the same for you.
Dee
Every Day is a Blessing!
On the way there and back we stopped to visit my niece , her husband and son. It was great spending time with them. Their Son D gave me the name GeeGee. He was trying to say Aunt Dee.
At my daughters I got to watch my grandson John ,who is now 9 months old, play, eat, cry and crawl around. He says a few dadas and mamas but as I watched him I saw that he could teach me some pretty important things- without using words.
Nothing is better than being in the arms of your family. ( Mom, Dad, and Grandmas, Grandpas and Uncles, Aunts)
When you are done eating just push that food away.( He would always push the bottle out of his mouth when he was done drinking even if there was more left. Oh, how I wish I could put that one into practice more often.)
Sleep when you need too. Even if it means taking a nap in the middle of the day when lots of people are around.
Your dog is your best friend. ( John has two best friends , Silvio and Walter, by his side.) .
When people take out a camera- smile!
Keep trying even if it means you keep falling down, eventually things will work out.
( John kept trying to pull himself up to a standing position while we were there. He did accomplish it two days after we left.)
John's lessons made me smile. I hope they do the same for you.
Dee
Every Day is a Blessing!
Monday, June 18, 2012
U Penn and Tumor Storage
At the ASCO meeting there was a discussion about patients storing tumor samples. A week or so ago another ovarian cancer survivor passed on this information about U Penn and Tumor Storage. U Penn has been at the forefront of developing vaccines for patients using their own tumor tissue so this partnership makes sense.
In the context of our efforts to develop autologous vaccine trials using patients' own tumor, we have partnered with a service company which works for patients to acquire, process, and bank their tumors in several formats so they can have multiple therapeutic options in the future.
StoreMyTumor http://www. storemytumor.com is an independent entity which only works with the patients allowing them to have full control over their tumor tissue. This offers patients several options of utilization of their tumors, from storage, to molecular and chemotherapy analysis, and personalized vaccines."
Dee
Every Day is a Blessing?
In the context of our efforts to develop autologous vaccine trials using patients' own tumor, we have partnered with a service company which works for patients to acquire, process, and bank their tumors in several formats so they can have multiple therapeutic options in the future.
StoreMyTumor http://www.
Dee
Every Day is a Blessing?
Friday, June 15, 2012
Trenton Thunder - July 4th Fundraiser
If you want a fun way to spend July 4th and also support some great organizations then check out this event at the Trenton Thunder. Who wouldn't love fireworks on the 4th!
Dee
Every Day is a Blessing!
Dee
Every Day is a Blessing!
ASCO - Dose Dense Therapy, Neoadjuvant Therapy and Biologics
This will be my final report regarding my experience at the ASCO 2012 meeting.
Instead of personally writing about what I heard at June second's Upfront Treatment of Ovarian Cancer an International Consensus and Variation Session Educational Session I thought it best to just share a link to a wonderful article ( plus it has cool graphics too) on the ASCO site . This session was presented by Drs. Armstrong ( IP therapy) , Fujiwara ( Dose Dense and Neoadjuvant therapy) and Rustin ( Parp inhibitors and Bevacizumab). You can tell how important the ASCO committee felt this was since it was held in E Arie Crown Theater which seats over 4000 people.
So please click on the link below and read about those topics.
http://chicago2012.asco.org/ASCODailyNews/upfrontovarian.aspx
Dee
Every Day is a Blessing!
Instead of personally writing about what I heard at June second's Upfront Treatment of Ovarian Cancer an International Consensus and Variation Session Educational Session I thought it best to just share a link to a wonderful article ( plus it has cool graphics too) on the ASCO site . This session was presented by Drs. Armstrong ( IP therapy) , Fujiwara ( Dose Dense and Neoadjuvant therapy) and Rustin ( Parp inhibitors and Bevacizumab). You can tell how important the ASCO committee felt this was since it was held in E Arie Crown Theater which seats over 4000 people.
So please click on the link below and read about those topics.
http://chicago2012.asco.org/ASCODailyNews/upfrontovarian.aspx
Dee
Every Day is a Blessing!
Thursday, June 14, 2012
ASCO - Patient and Survivor Care
Part four in my ASCO report.
I spent time chatting with researchers and reading many posters related to patient survivorship issues at ASCO. It pleased me that researchers were spending time looking at quality of life, anxiety , sexual function , support efforts, hope, obesity and improving side effects.
Obesity
The researchers looked at obesity and survival in ovarian cancer patients. They compared 130 obese vs 240 non-obese women with the disease. The time to recurrence was identical at 15 months in both groups. They concluded that obesity does not impact time to recurrence. (Abstract 5049)
Quality of Life/ Hope
This longitudinal study by researchers from the Cancer Treatment Centers of America studied whether changes in quality of life could predict survival in ovarian cancer patients treated in an integrated model. There were 137 patients in the study and included newly diagnosed and those with recurrences. Quality of Life questionnaires were completed at initial visits and at 3 months of treatment. Preliminary evidence showed that patients with improved quality of life at three months had significantly longer survival. (Abstract 5049)
Researchers from Germany used a questionnaire to study sexual function in ovarian cancer patients. The study included over 700 women. Half of the women reported they were not sexually active. Results showed that sexual activity was impaired in women with ovarian cancer but that it did not impact their quality of life. The researchers concluded that a shift in priorities regarding anxiety due to cancer survival may have impacted the results.(Abstract 5051)
A longitudinal study by MD Anderson researchers studied ovarian cancer patients at MD Anderson, an academic cancer center and a community hospital. Results showed that underserved patients in the community hospital setting had poorer quality of life and that the future depended on “luck” or “others”. than those at the cancer centers. ( Abstract 9134) This is the poster of the work Dr L Ranondetta described at the Grand Rounds at St Peters University Hospital in May.
The Lance Armstrong Foundation researchers fielded a LiveSTRONG Survey for People Affected by Cancer. The survey looked at post treatment concerns and treatment summaries. Results showed that only one third of the patients received a treamtnet summary. Those patients that did receive a summary had a variety of positive outcomes. ( Abstract 9136)
Therapy management/ Anxiety
A German Study surveyed 676 ovarian cancer patients regarding their expectations and needs about their therapy and doctor /patient communications. They found there is a high need of patients to discuss all details of treatment options and clinical management. the three most important aspects were “More time for discussion”, “therapy should not lead to hair loss” ad “therapy should be more effective”.
(5044)
Side Effects/ Hair loss
This prospective study of chemo induced hair loss with and without scalp cooling was done by researchers in Canada. Researchers studied 130+ women with and without a scalp cooling device. The study used a survey and photos were taken before treatment,at 3 cycles and at the end of treatment. The result showed 49% of women who used the scalp cooling described their “Success” as none or little hair loss . While 4% of women who did not use the scalp cooling had “Success”. Hair stylists reported “success at 34% for those using the cooling device (Abstract 9138)
Dee
Every Day is a Blessing!
Wednesday, June 13, 2012
ASCO - OCEANS and AURELIA studies
This is the fourth installment of my ASCO report.
Last year I wrote about the results of the OCEANS Study ( phase III trial of gemcitabine, carboplatin and bevacizumab or gemcitabine, carboplatin and placebo) . This year Dr. Aghajanian presented the safety analysis data from the OCEANS .
Abstract 5054
It appears from these studies that combining cytotoxic chemotherapies and Bevacizumab has a benefit to patients.
Dee
Every Day is a Blessing
Last year I wrote about the results of the OCEANS Study ( phase III trial of gemcitabine, carboplatin and bevacizumab or gemcitabine, carboplatin and placebo) . This year Dr. Aghajanian presented the safety analysis data from the OCEANS .
Abstract 5054
An updated safety analysis of OCEANS, a randomized, double-blind, phase III trial of gemcitabine (G) and carboplatin (C) with bevacizumab (BV) or placebo (PL) followed by BV or PL to disease progression (PD) in patients with platinum-sensitive (Plat-S) recurrent ovarian cancer.
"Conclusions: The overall safety profile was similar to that seen at the time of the final PFS( progression free survival) analysis. Higher incidences of proteinuria ( excess protein in urine) and HTN ( Hypertension)were possibly related to longer BV treatment duration and resolved in the majority of patients."
The results show that the side effects experience by those in the Bevacizumab group were similar to those in the placebo group.
Abstract LBA 5002
AURELIA: A randomized phase III trial evaluating bevacizumab (BEV) plus chemotherapy (CT) for platinum (PT)-resistant recurrent ovarian cancer (OC).
"Conclusions: In PT-resistant OC, BEV + CT provides statistically significant and clinically meaningful improvement in PFS and ORR vs CT alone. Strict inclusion criteria minimized the incidence of BEV AEs. This is the first phase III trial in PT-resistant OC to show benefit with a targeted therapy and improved outcome with a combination vs monotherapy."
This phase III trial showed that women with recurrent platinum resistant ovarian cancer given Avastin along with chemotherapy (weekly taxol, doxil or topotecan) had a median survival of 6.7 months compared to 3.4 months in women in the control arm. The side effects were similar to what was seen in other Avastin studies.
Dee
Every Day is a Blessing!
Dee
Every Day is a Blessing
Tuesday, June 12, 2012
ASCO - Parp Inhibitor and BRCA Mutation Studies
Part Three of my ASCO Report.
Parp inhibitors (which inhibit the enzyme poly ADP ribose polymerase) have been found in some cases to be effective in women with BRCA1 and 2 mutations. There have even been a few studies where the inhibitor was found to be effective in women without the mutation.
The Parp inhibitor abstract and BRCA 1& BRCA 2 abstract were part of an ASCO Poster Session, while the last study was part of an Oral Abstract session I attended.
Abstract 5068
A phase II study of pazopanib in recurrent or persistent ovarian (EOC), peritoneal (PPC), or Fallopian tube cancer (FTC): A Spanish Ovarian Cancer Group (GEICO) study.
This Spanish study was discontinued early since the clinical benefit number was not reached due to the lack of activity of Pazopanib.
Abstract 5066
This poster was a review of over 2000 studies and confirmed the hypothesis that a BRCA mutation is a prognostic ( predicting the outcome) factor in patients with ovarian cancer. Those women with BRCA mutations had better survival than the control group (women without the mutation). There was slightly longer survival for those with BRCA 2 mutations than BRCA1 . The researchers suggested that was due to a different nature of the dysfunction of these two genes.
Abstract 5001
This abstract was discussed by Dr Oza at the Oral Abstract session on Saturday. The study involved women with recurrent disease. Olaparib is an oral Parp Inhibitor drug.
Conclusion: Patients with platinum sensitive recurrent serous ovarian cancer who took the parp inhibitor olaparib along with carboplatin and placitaxel followed by olaparib maintenance had some improvement in progression free survival (median 2.6 months) compared to patients treated with carboplatin and paclitaxel online.
It should be noted that earlier this year Astra Zeneca ( the maker of Olaparib) decided not to produce Olaparib for maintenance therapy of serous ovarian cancer.
Dee
Every Day is a Blessing!
Parp inhibitors (which inhibit the enzyme poly ADP ribose polymerase) have been found in some cases to be effective in women with BRCA1 and 2 mutations. There have even been a few studies where the inhibitor was found to be effective in women without the mutation.
The Parp inhibitor abstract and BRCA 1& BRCA 2 abstract were part of an ASCO Poster Session, while the last study was part of an Oral Abstract session I attended.
Abstract 5068
A phase II study of pazopanib in recurrent or persistent ovarian (EOC), peritoneal (PPC), or Fallopian tube cancer (FTC): A Spanish Ovarian Cancer Group (GEICO) study.
Abstract 5066
Effect of BRCA mutation on prognosis in patients with ovarian cancer: A systematic review and meta-analysis.
This poster was a review of over 2000 studies and confirmed the hypothesis that a BRCA mutation is a prognostic ( predicting the outcome) factor in patients with ovarian cancer. Those women with BRCA mutations had better survival than the control group (women without the mutation). There was slightly longer survival for those with BRCA 2 mutations than BRCA1 . The researchers suggested that was due to a different nature of the dysfunction of these two genes.
Abstract 5001
Olaparib plus paclitaxel plus carboplatin (P/C) followed by olaparib maintenance treatment in patients (pts) with platinum-sensitive recurrent serous ovarian cancer (PSR SOC): A randomized, open-label phase II study.
This abstract was discussed by Dr Oza at the Oral Abstract session on Saturday. The study involved women with recurrent disease. Olaparib is an oral Parp Inhibitor drug.
Conclusion: Patients with platinum sensitive recurrent serous ovarian cancer who took the parp inhibitor olaparib along with carboplatin and placitaxel followed by olaparib maintenance had some improvement in progression free survival (median 2.6 months) compared to patients treated with carboplatin and paclitaxel online.
It should be noted that earlier this year Astra Zeneca ( the maker of Olaparib) decided not to produce Olaparib for maintenance therapy of serous ovarian cancer.
Dee
Every Day is a Blessing!
Monday, June 11, 2012
ASCO - Ovarian Cancer Phase 1 trials
Part two of my ASCO report. This one is about some of the many phase 1 trials I learned about.
The part of ASCO I liked best were the poster sessions. Many times there was a researcher present at the session to answer questions about the studies being done and most were very happy to share information with patient advocates. In addition to those posters specific to ovarian cancer I also started to look closely at research that involved solid tumors since ovarian cancer is a solid tumor.
I saw research on small molecules that inhibit different pathways in cancer proliferation and also research combining those therapies with standard chemotherapy drugs.
Here some phase 1 trials I found most intriguing:
Abstract 3082
Conclusion: Dovitinib(TK1258) was used in this phase I trial and found the MTD (maximum tolerated dose) to be 500mg.
Abstract 3054
Abstract 3041
Abstract 5061
I understand that many of these treatments may not be effective in terms of increasing overall survival but this very small review depicts that there is a good body of work being conducted to to improve the treatment of Ovarian Cancer.
Dee
Every Day is a Blessing!
The part of ASCO I liked best were the poster sessions. Many times there was a researcher present at the session to answer questions about the studies being done and most were very happy to share information with patient advocates. In addition to those posters specific to ovarian cancer I also started to look closely at research that involved solid tumors since ovarian cancer is a solid tumor.
I saw research on small molecules that inhibit different pathways in cancer proliferation and also research combining those therapies with standard chemotherapy drugs.
Here some phase 1 trials I found most intriguing:
Abstract 3082
A phase I study of R04929097, an oral gamma secretase inhibitor, in combination with gemcitabine in patients with advanced solid tumors (PHL-078/CTEP 8575).
"RO4929097 (RO) is an oral inhibitor of gamma-secretase that disrupts Notch signaling."
Conclusion: "RO and GEM can be safely combined." Notch signaling pathway is a transmembrane ( outside the cancer cell to inside the cell) protein. The protein signals the cell to reproduce.
Abstract 3088A phase I study of dovitinib (TKI258) in Japanese patients with advanced solid tumors
"Dovitinib is a tyrosine kinase inhibitor with demonstrated inhibitory activity against FGFRs, VEGFRs, and PDGFRs in vivo."Conclusion: Dovitinib(TK1258) was used in this phase I trial and found the MTD (maximum tolerated dose) to be 500mg.
Abstract 3054
A phase I study of chronically dosed, single-agent veliparib (ABT-888) in patients (pts) with either BRCA 1/2-mutated cancer (BRCA+), platinum-refractory ovarian cancer, or basal-like breast cancer (BRCA-wt).
"Veliparib(ABT-888) is an oral, potent inhibitor of PARP 1/2. Preclinically, PARP inhibitors have activity in tumors with defective homologous recombination (HR), particularly those that are BRCA+."
Conclusion: Veliparib(ABT 888) ,an oral drug, was found to be tolerable at the MTD of 500mg and was also found to show evidence of anti-cancer activity in BRCA1 and 2 patients. I was pleased to see that researchers in this study included oncologists from CINJ.
Abstract 3044SORAVE: Phase I study for the treatment of relapsed solid tumors with the combination of sorafenib and everolimus.
"Dual inhibition of signaling pathways interfering with angiogenesis and cell proliferation may increase anti-tumor efficacy. We evaluated the combination of the VEGFR inhibitor sorafenib (S) and the mTOR inhibitor everolimus (E)"
Conclusion:Relasped patients tolerated a combination of E everolimus at 7.5 mg/day and Sorafenib at 400 mg per day. It was found to be safe and feasible. Sorafenib is a multi-kinase inibitor and everolimus is an mTor inhibitor.Abstract 3041
Phase I, first-in-human trial of an oral VEGFR tyrosine kinase inhibitor (TKI) x-82 in patients (pts) with advanced solid tumors
"VEGFR TKIs have shown benefit in the treatment of various tumor types. Side effects of the TKIs have affected the duration of therapy pts can tolerate, as well as the combinability with chemotherapy. X-82 is a highly potent VEGFR/PDGFR TKI with a smaller volume of distribution and limited tissue accumulation designed to minimize side effects while maintaining target effect."
Conclusion:Oral X-82 is well tolerated with reduced the side effects.Abstract 5061
A phase Ib study of the combination of temsirolimus (T) and pegylated liposomal doxorubicin (PLD) in advanced or recurrent breast, endometrial, and ovarian cancer.
"PLD is active in metastatic breast, endometrial and ovarian cancer. Preclinical studies suggest that mTOR inhibitors (mTORi), such as T, have an additive therapeutic effect to chemotherapy and resistance to doxorubicin can be reversed by adding an mTORi.:
Conclusion : "The combination of T and PLD is safe and tolerable. The MTD was assessed at PLD 40 mg/m2 once every 4 weeks and T 15 mg weekly. The activity of this combination in breast, endometrial and ovarian cancer pts is promising and warrants further studies. "Temsirolimus is a kinase inhibitor which would be working with a chemotherapy drug.I understand that many of these treatments may not be effective in terms of increasing overall survival but this very small review depicts that there is a good body of work being conducted to to improve the treatment of Ovarian Cancer.
Dee
Every Day is a Blessing!
Survivor's Day at CINJ
For the past few months I have had the privilege to have been a member of the Survivor's Day committee at The Cancer Institute of NJ(CINJ) . The theme for this year's event was iSurvive... iThrive.
Yesterday as patients came through the revolving door at CINJ they were greeted by the nurses, doctors researchers and staff . There were many hugs and hand shakes and "it is great to see you" .
The day began with some participants taking part in a tour of two research laboratories .
Then the break-out session started in rooms throughout the center. Here are some of the topics the patients could choose from:
iTailor Treatments- the science behind personalized medicine
iIntegrate- complementary medicine
iParticipate- the importance of clinical trials
iGraze- healthy eating
iBreathe- letting go of stress
iMove- activity during and after treatment
I attended the iIntegrate and iMove sessions. Meg McQuarrie from the Elixir Fund spoke about meditation, acupuncture and yoga and other forms of complimentary medicine but the best part being able to learn some Jin Shin Jyutsu moves. I know I can easily put what I learned to practice.
The iMove session with Lexi Anderson from the LiveSTRONG at the YMCA and Dr Coups a behavioral therapist from CINJ explained how patients should not be sedentary during and after treatment but that we should try to be active every day. The goal is to reach 150 minutes per week of moderate activity. They explained that activity does not have to necessarily be a sport , like tennis or basketball but could include walking, gardening, riding a bike, swimming and even cleaning the house. They also said the150 minutes does not have to be in 30 or 40 minute chunks of time but 10 minutes here and there throughout the day are helpful too.
After the sessions we all went over to the atrium of Robert Wood Johnson University Hospital for an interactive lunch. After a brief exercise session by LiveSTRONG at the YMCA, Panera bread demonstrated how to make a healthy salad. Thanks Panera for the delicious food.
I saw many fellow ovarian and breast cancer survivors and their caregivers a well as many of the nurses and receptionists I know from the clinic. But I think Dr Susan Goodin , Associate Director of Clinical Trials said it best a lunch Survivors Day for her is like a "family reunion."Indeed, it was.
Dee
Every Day is a Blessing!
Yesterday as patients came through the revolving door at CINJ they were greeted by the nurses, doctors researchers and staff . There were many hugs and hand shakes and "it is great to see you" .
The day began with some participants taking part in a tour of two research laboratories .
Then the break-out session started in rooms throughout the center. Here are some of the topics the patients could choose from:
iTailor Treatments- the science behind personalized medicine
iIntegrate- complementary medicine
iParticipate- the importance of clinical trials
iGraze- healthy eating
iBreathe- letting go of stress
iMove- activity during and after treatment
I attended the iIntegrate and iMove sessions. Meg McQuarrie from the Elixir Fund spoke about meditation, acupuncture and yoga and other forms of complimentary medicine but the best part being able to learn some Jin Shin Jyutsu moves. I know I can easily put what I learned to practice.
The iMove session with Lexi Anderson from the LiveSTRONG at the YMCA and Dr Coups a behavioral therapist from CINJ explained how patients should not be sedentary during and after treatment but that we should try to be active every day. The goal is to reach 150 minutes per week of moderate activity. They explained that activity does not have to necessarily be a sport , like tennis or basketball but could include walking, gardening, riding a bike, swimming and even cleaning the house. They also said the150 minutes does not have to be in 30 or 40 minute chunks of time but 10 minutes here and there throughout the day are helpful too.
After the sessions we all went over to the atrium of Robert Wood Johnson University Hospital for an interactive lunch. After a brief exercise session by LiveSTRONG at the YMCA, Panera bread demonstrated how to make a healthy salad. Thanks Panera for the delicious food.
I saw many fellow ovarian and breast cancer survivors and their caregivers a well as many of the nurses and receptionists I know from the clinic. But I think Dr Susan Goodin , Associate Director of Clinical Trials said it best a lunch Survivors Day for her is like a "family reunion."Indeed, it was.
Dee
Every Day is a Blessing!
Thursday, June 7, 2012
ASCO Drug Shortage Session
First in a series of reports on the sessions I attended at the Annual ASCO meeting.
I attended the Drug Shortages:Why is this happening and how can we treat our patients session at ASCO presented by Dr Kantarjian, Mr Neas and Dr Schilsky.
How has the shortage of chemo drugs affected the treatment of patients?
Most generic drugs do not have real alternatives that patients can be given. So this has created problems for the regular treatment of cancer patients and those on clinical trials. Oncologists can delay treatment which increases patients anxiety. Onocologists may also choose to use an alternate drug but that drug may not be as effective nor will the provider necessarily have experience administering the drug or be as familiar with the side effects of the drug. If the patients are switched to the brand-named drug then drug companies may require higher copays or patients may have to pay the cost out of pocket.
If there is a shortage is of a drug being used in a clinical trial the accrual of patients may have to be lowered or the trial might be stopped all together. If the drug is switched that might be a violation of the protocols of the trial and my confound the data.
What about the gray market or counterfeit drugs?
The gray market is made up of secondary drug distributors. These distributors might hoard drugs and then charge exorbitant prices for the drugs that are in short supply.
As you may know counterfeit Bevacizumab was provided to wholesalers who then sold the drug in the US. This is an international problem not just a problem in the US.
Why can't other pharmaceutical companies just pick up the slack?
It takes 1 and a half years to build a sterile injectable facility. So even if a company decides now they want to produce a drug that is in short supply it will take over a year and a half and FDA site approval before any drug can be manufactured. What if a company already produces other sterile injectable drugs in an FDA approved facility the process must be approved by the FDA before the drug can begin to be manufactured.
What does the future holds?
A recent federal law will require companies to provide a 6 month notification of a shortage or plant shut-down.
Pharmaceutical companies have provided the FDA with $1.5 billion to help shorten the approval process of the manufacturing facilities.
Recommended by the speakers was further FDA approval of foreign manufacturing facilities and
the establishment of a pricing floor for generics.
After listening to the speakers I was pleased to see the active part that ASCO took over the past few months in resolving the drug shortage issues.
Dee
Every Day is a Blessing!
I attended the Drug Shortages:Why is this happening and how can we treat our patients session at ASCO presented by Dr Kantarjian, Mr Neas and Dr Schilsky.
How has the shortage of chemo drugs affected the treatment of patients?
Most generic drugs do not have real alternatives that patients can be given. So this has created problems for the regular treatment of cancer patients and those on clinical trials. Oncologists can delay treatment which increases patients anxiety. Onocologists may also choose to use an alternate drug but that drug may not be as effective nor will the provider necessarily have experience administering the drug or be as familiar with the side effects of the drug. If the patients are switched to the brand-named drug then drug companies may require higher copays or patients may have to pay the cost out of pocket.
If there is a shortage is of a drug being used in a clinical trial the accrual of patients may have to be lowered or the trial might be stopped all together. If the drug is switched that might be a violation of the protocols of the trial and my confound the data.
What about the gray market or counterfeit drugs?
The gray market is made up of secondary drug distributors. These distributors might hoard drugs and then charge exorbitant prices for the drugs that are in short supply.
As you may know counterfeit Bevacizumab was provided to wholesalers who then sold the drug in the US. This is an international problem not just a problem in the US.
Why can't other pharmaceutical companies just pick up the slack?
It takes 1 and a half years to build a sterile injectable facility. So even if a company decides now they want to produce a drug that is in short supply it will take over a year and a half and FDA site approval before any drug can be manufactured. What if a company already produces other sterile injectable drugs in an FDA approved facility the process must be approved by the FDA before the drug can begin to be manufactured.
What does the future holds?
A recent federal law will require companies to provide a 6 month notification of a shortage or plant shut-down.
Pharmaceutical companies have provided the FDA with $1.5 billion to help shorten the approval process of the manufacturing facilities.
Recommended by the speakers was further FDA approval of foreign manufacturing facilities and
the establishment of a pricing floor for generics.
After listening to the speakers I was pleased to see the active part that ASCO took over the past few months in resolving the drug shortage issues.
Dee
Every Day is a Blessing!
Wednesday, June 6, 2012
ASCO in Manageable Pieces
As you know this past weekend I was in Chicago for the American Society of Clinical Oncologists Annual (ASCO) meeting. I was participating thanks to the support of the Conquer Cancer Foundation. ASCO is the largest oncology meeting in the world with 30,000 participants.
While at the airport yesterday , waiting for my delayed flight home, I looked back at my itinerary for ASCO and found that I attended:
7 Education sessions
1 Clinical Science Symposium
2 Oral Abstract sessions
2 Poster Discussion sessions
I viewed well over 100 posters on gynecologic cancer, genitourinary cancer , developmental therapeutics and tumor biology and spoke to researchers who came from the US, Germany , France, Japan and Spain. And I also met some of the most motivated research advocates in the world.
I was hoping to blog every day but since my day started at 8am and ended at 6:30 with most days including dinners that ran till 9pm I found I did not reach my goal to post a detailed entry every day. Hopefully the posts I did write gave you flavor of what the meeting sessions covered.
But I've decided that I want to convey more about the research I heard and read about. So over the next few days I will be posting more detailed entries about:
Drug Shortages
Ovarian Cancer Phase I trials
Ovarian Cancer Phase III trials
International Ovarian Cancer Research
Parp Inhibitors
Cancer Patient Survivorship
Random Things I Found Interesting
I hope you will check back to read about the topics I found most interesting. Be sure to a questions if you would like me to explain anything further.
Dee
Every Day is a Blessing!
While at the airport yesterday , waiting for my delayed flight home, I looked back at my itinerary for ASCO and found that I attended:
7 Education sessions
1 Clinical Science Symposium
2 Oral Abstract sessions
2 Poster Discussion sessions
I viewed well over 100 posters on gynecologic cancer, genitourinary cancer , developmental therapeutics and tumor biology and spoke to researchers who came from the US, Germany , France, Japan and Spain. And I also met some of the most motivated research advocates in the world.
I was hoping to blog every day but since my day started at 8am and ended at 6:30 with most days including dinners that ran till 9pm I found I did not reach my goal to post a detailed entry every day. Hopefully the posts I did write gave you flavor of what the meeting sessions covered.
But I've decided that I want to convey more about the research I heard and read about. So over the next few days I will be posting more detailed entries about:
Drug Shortages
Ovarian Cancer Phase I trials
Ovarian Cancer Phase III trials
International Ovarian Cancer Research
Parp Inhibitors
Cancer Patient Survivorship
Random Things I Found Interesting
I hope you will check back to read about the topics I found most interesting. Be sure to a questions if you would like me to explain anything further.
Dee
Every Day is a Blessing!
ASCO Tuesday- Patient Care
As the meeting came to a close I attended a session called
Cancer : Getting on your Nerves
There were speakers on peripheral neuropathy and depression
In a nutshell:
Cancer : Getting on your Nerves
There were speakers on peripheral neuropathy and depression
In a nutshell:
- Duloxetine was found to reduce the pain and tingling from peripheral neuropathy in cancer survivors in a phase III trial. 59% had a response and another 33% had a decrease in their pain score. (Smith - CRA9013)
- Falls are common in patients with peripheral neuropathy. 12% in the study of 461 survivors reported falls, 60% physical limitations and 25% reported functional losses due to peripheral neuropathy.(Mohile- 9014)
- There is a machine called the Scrambler (approved Feb 9,2012) which sends impulses to areas of neuropathy and helps retrain the brain to normal. (Loprinzi)
- There is an increased risk of suicide in young adult cancer patients compared to older patients. Risk was reduced when the patient had a better alliance ( relationship) with their oncologist.(Trevino-9015)
- Surveys of patients and physicians showed a prevalence of depression in cancer patients. Patients reported feeling sad, feeling distressed and having mood changes. (Manola -9016)
After the talks I was able to speak to Dr Mohile. I thanked her for her research on falling due to neuropathy. I know many OC survivors who have mentioned to me how they seem to trip and stumble more since having treatment and experiencing the neuropathy. This might be anecdotal evidence so I was pleased to see a study done in this area. I asked Dr Mohile if her patients find that the numbness may be constant but the pain can intensify and then decrease. She told me that it is very common for that to occur with the Carbo Taxol treatments that we have received.
Next post - ASCO in Manageable Pieces
Dee
Every Day is a Blessing!
Monday, June 4, 2012
ASCO Monday -It is all about the genes
I attended a very informative session this morning called Genomics in Gyn Cancers:Important Findings from the Genome Atlas and Beyond.
Dr Goodfellow defined genomics as the descriptions of patterns of genes. The Cancer Genomic Atlas (TCGA) sequenced 316 ovarian cancer tumors from primary , pretreated women. Researchers looked for additions , deletions and DNA copy number changes, mRNA and methylation . A number of different platforms were used for the analysis.
Researchers found 63 different mutations per Ovarian Cancer sample. TP 53 was found in 96% of the samples and could be considered a mutation that drives OC. The other mutations from BRCA1 to CSMD3 were only found at levels of 6% or less. To give you an idea of what was found in Glioblastoma tumors also studied by TCGA were studied they found changes at chromosome 7 and 10 at very high levels.
What does this tell us? OC cancer tumors are heterogeneous - composed of many different mutations.
I'm wondering how the fact that the tumors are so heterogeous can be use to treat the disease.
I also spent time this morning talking to researchers at a poster session. I will post an entire entry on the interesting small cell molecules in phase 1 trials.
Off to another session.
Dee
Every Day is a Blessing!
Dr Goodfellow defined genomics as the descriptions of patterns of genes. The Cancer Genomic Atlas (TCGA) sequenced 316 ovarian cancer tumors from primary , pretreated women. Researchers looked for additions , deletions and DNA copy number changes, mRNA and methylation . A number of different platforms were used for the analysis.
Researchers found 63 different mutations per Ovarian Cancer sample. TP 53 was found in 96% of the samples and could be considered a mutation that drives OC. The other mutations from BRCA1 to CSMD3 were only found at levels of 6% or less. To give you an idea of what was found in Glioblastoma tumors also studied by TCGA were studied they found changes at chromosome 7 and 10 at very high levels.
What does this tell us? OC cancer tumors are heterogeneous - composed of many different mutations.
I'm wondering how the fact that the tumors are so heterogeous can be use to treat the disease.
I also spent time this morning talking to researchers at a poster session. I will post an entire entry on the interesting small cell molecules in phase 1 trials.
Off to another session.
Dee
Every Day is a Blessing!
Sunday, June 3, 2012
ASCO Saturday - International session on OC
Note :
This post is a summary of the sessions I attended on Saturday. When I am back home I will write more detailed entries of the sessions I found most interesting.
My day started with presentations on SNaPshot, a molecular diagnostic test that looked at tumors. The tumors they studied had mutations in 72 areas in 15 genes for ovarian cancer.The question the researcher asked was if these mutations were "drugable", were there drugs available to correct the mutation found. There was also a talk on somatic mutation detection . The comment was made that "drugable" targets in ovarian cancer were limited.
The afternoon sessions was even more informative. At an international session I heard about the benefits of IP vs IV chemotherapy for ovarian cancer . Many IP studies included the use of Avastin. Some studies mentioned in the talk were at reduced Avastin dose levels to reduce adverse gastrointestinal effects and methods are in place to treat the blood pressure increases seen in some patients. I also heard about Dose Dense Neoadjuvant chemotherapy for Ovarian Cancer & Parp inhibitor use.
The day finished with presentations and discussions on erlotinib, olaparib , and the AURELIA study. I will post in more detail about theses studies and subsequent discussion next week.
The bottom line is that there is more research being done every day to understand the pathways what drives ovarian cancer growth.And that is a good thing. Finding a drug, biologic or small molecule that will affect the process in primary and recurrent disease is the challenge. I am happy to report that there are researchers doing that work.
Dee
Every Day is a Blessing!
This post is a summary of the sessions I attended on Saturday. When I am back home I will write more detailed entries of the sessions I found most interesting.
My day started with presentations on SNaPshot, a molecular diagnostic test that looked at tumors. The tumors they studied had mutations in 72 areas in 15 genes for ovarian cancer.The question the researcher asked was if these mutations were "drugable", were there drugs available to correct the mutation found. There was also a talk on somatic mutation detection . The comment was made that "drugable" targets in ovarian cancer were limited.
The afternoon sessions was even more informative. At an international session I heard about the benefits of IP vs IV chemotherapy for ovarian cancer . Many IP studies included the use of Avastin. Some studies mentioned in the talk were at reduced Avastin dose levels to reduce adverse gastrointestinal effects and methods are in place to treat the blood pressure increases seen in some patients. I also heard about Dose Dense Neoadjuvant chemotherapy for Ovarian Cancer & Parp inhibitor use.
The day finished with presentations and discussions on erlotinib, olaparib , and the AURELIA study. I will post in more detail about theses studies and subsequent discussion next week.
The bottom line is that there is more research being done every day to understand the pathways what drives ovarian cancer growth.And that is a good thing. Finding a drug, biologic or small molecule that will affect the process in primary and recurrent disease is the challenge. I am happy to report that there are researchers doing that work.
Dee
Every Day is a Blessing!
ASCO Friday pm - Gyn Posters
Note: I apologize for not updating my blog as frequently as I had intended to. My nook requires me to enter the posts in html- adding tags and the wifi here at McCormick has been spotty.
I arrived late Friday ,after a two hour flight delay. So I missed the personalized medicine lecture I had wanted to hear. Instead I went directly to the gynecologic cancer posters. The posters I found most interesting include: the vaccine research at UPenn, metronic oral Topotecan and pazopanib, lenalomide in recurrent OC , gamma secretase inhibitors, olaparib & xenograph models (The researcher graciously explained his work.) .Later in the day I attended the Poster Discussion sessions in which the posters are reviewed.
In the evening I attended the Focus on Research dinner. I attended ASCO last year as a Focus on Research Scholar and was pleased to be invited to this year's dinner. I met two more ovarian cancer survivors and was able to chat with this year scholars.
Dee
Every Day is a Blessing!
I arrived late Friday ,after a two hour flight delay. So I missed the personalized medicine lecture I had wanted to hear. Instead I went directly to the gynecologic cancer posters. The posters I found most interesting include: the vaccine research at UPenn, metronic oral Topotecan and pazopanib, lenalomide in recurrent OC , gamma secretase inhibitors, olaparib & xenograph models (The researcher graciously explained his work.) .Later in the day I attended the Poster Discussion sessions in which the posters are reviewed.
In the evening I attended the Focus on Research dinner. I attended ASCO last year as a Focus on Research Scholar and was pleased to be invited to this year's dinner. I met two more ovarian cancer survivors and was able to chat with this year scholars.
Dee
Every Day is a Blessing!
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