By now most people have heard that Olivia Newton-John's breast cancer has returned this time in her lower back. (USA Today) It has been 25 years since her initial diagnosis. Breast cancer metastasizes and it is not unusual for women to be disease free for five, ten, fifteen years and have the disease return. There is a organization METAvivor whose focus is to do just that and to support women who are living with disease.
Did you know that Ovarian Cancer can recur - months and years later? I know women who have dealt with single recurrences and some with multiple recurrences. Some women are in constant treatment just like those with metastatic breast cancer.
Yes, there are new drugs being developed to treat the recurrences and target specific mutations but just like with breast cancer, more research is needed. But being diagnosed with a disease that can recur at any time brings along with it other issues to deal with too.
My first reaction to hearing about Olivia Newton-John was sadness and then the fear took hold. I could feel that strange tightening in the pit of my stomach. And then my thoughts took off to a place that I try very hard to keep in check. Damn. I could recur at any time.
I've been really tired lately. ( Could be my allergies.)
My lower back started hurting a few days ago. ( Could be bending to pick up my grandsons.)
My digestive system still isn't right since the stomach bug I had two weeks ago. ( Could just be it is taking that long to clear up.)
I take a deep breath. And then another and finally slowly get hold of myself. I know that my gyn onc will see me in a few months for my regular check-up. I know that if these symptoms continue for two more weeks I can always give her a call and see her early. Alright I have a plan. Once I have a plan I am good.
Being disease free is not being worry free. That is a side effect that can come on at any time.
How do you handle your fears of recurrence?
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!
Wednesday, May 31, 2017
Friday, May 26, 2017
2017 Annual Retreat on Cancer Research Public Forum Highlights
I was pleased to have the opportunity to attend yesterday's Public Forum segment of the 2017 Annual Retreat on Cancer Research in New Jersey presented by the Rutgers Cancer Institute of New Jersey (RCINJ) and the New Jersey Commission on Cancer Research. This years Forum topic was Precision Medicine. The Event took place at the Rutgers College Avenue Student Center.
After an introduction and welcome by Shridar Ganesan, MD, PhD (RCINJ), Dr. Kim Hershfield spoke on The Promise and Practice of Precision Oncology. After a short review of the structure of the cell and DNA, she described how oncogenes and tumor suppressor genes work. In the past, treatments were based on the organ where the cancer was found and the cancer's histology. Today knowledge of a tumor's gene mutations can lead to the use of a targeted therapy. Knowledge of the mutations that can cause a cancer has increased in the past few years and researchers like those at RCINJ are working to understand the impact of those mutations and develop targeted therapies for them.
Another avenue of recent study is the use of a liquid biopsy. With a liquid biopsy, a blood sample is examined for circulating DNA from a cancer tumor.
As Dr. Hershfield mentioned Precision Medicine is at the "toddler" stage. But every day researchers are looking to develop new treatments, test combination therapies, understand and reduce side effects, understand pathways, all with the goal of providing the best treatments for cancer patients.
The second speaker was Hetal Vig, MS a genetics counselor from RCINJ who spoke on Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy. Cancer may develop due to mutations that are germline ( hereditary) or sporadic. When examining a patient's family history it is important that both the maternal and paternal sides of the family are examined.
As an example, Ms Vig mentioned how BRCA mutations increase a person's risk for breast, ovarian and pancreatic cancers. Every person has two of each gene. When you have a germline mutation the mutation comes from the egg or sperm. If you are born with a BRCA mutation in one gene and over time you should develop a BRCA mutation in the second gene you can develop cancer. When you have a sporadic cancer you are born with no mutations in either gene but over time for some reason both your genes develop a BRCA mutation which can lead to cancer. So there are less steps to go through when you start out with a hereditary mutation to develop cancer. And it also explains why most sporadic cancers develop later in life since it takes more time for the mutations to occur.
Ms Vig also talked about incidental findings on genetic testing results. A framework needs to be developed regarding how to share those findings with patients. Interpreting the complex genetic test results many patients receive should be done by a trained genetic counselor. (I agree 100%.)
The final speaker of the morning, Dr Eric Singer , RCINJ spoke on Ethical Issues in Precision Oncology. Dr Singer's talk began with a discussion of clinical trial design and informed consent. Do patients really know that the trial they are taking part in is for research and may not offer them any benefit? Dr Singer also mentioned incidental findings and how those findings should be shared with patients. Dr Singer mentioned that is is important that health care providers protect patients from misinformation.
He also stressed the need for oncologists to know their patient's goals. Part of the discussion could include the cost the patient will have to bear when taking new expensive targeted therapies.The patient / health care provider discussion could include: Will the treatment extend survival? Will the treatment have toxic side effects? What patient reported outcomes have other patients provided? Is the decision to use the treatment performance-based or value-based?
I was happy to see in each of the presentations the patient being central to the treatment decision.
After the Forum I took some time to view the posters outside the Multi-purpose room. Here is one of particular interest to those with ovarian cancer.
Impact of Body Mass Index on Ovarian Cancer Survival Varies by Stage
Elisa Banderas et al
This study looked at the impact of obesity on ovarian cancer survival
It included over 1100 women with epithelial ovarian cancer diagnosed between 2000-2013 at Kaiser Permanente Northern California. "There was no evidence of an association between BMI( body mass index) on overall or ovarian cancer-specific survival" but they found a strong association by stage.
Conclusion: "Associations of obesity with ovarian cancer survival differ by stage, with decreased survival among those with localized disease and increased survival among those with late-stage disease. "
I look forward to next year's Retreat.
Dee
Every Day is a Blessing! Thankful for the doctors, researchers and staff throughout the state of NJ who are striving to understand cancer and make their patient's lives better.
After an introduction and welcome by Shridar Ganesan, MD, PhD (RCINJ), Dr. Kim Hershfield spoke on The Promise and Practice of Precision Oncology. After a short review of the structure of the cell and DNA, she described how oncogenes and tumor suppressor genes work. In the past, treatments were based on the organ where the cancer was found and the cancer's histology. Today knowledge of a tumor's gene mutations can lead to the use of a targeted therapy. Knowledge of the mutations that can cause a cancer has increased in the past few years and researchers like those at RCINJ are working to understand the impact of those mutations and develop targeted therapies for them.
Another avenue of recent study is the use of a liquid biopsy. With a liquid biopsy, a blood sample is examined for circulating DNA from a cancer tumor.
As Dr. Hershfield mentioned Precision Medicine is at the "toddler" stage. But every day researchers are looking to develop new treatments, test combination therapies, understand and reduce side effects, understand pathways, all with the goal of providing the best treatments for cancer patients.
The second speaker was Hetal Vig, MS a genetics counselor from RCINJ who spoke on Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy. Cancer may develop due to mutations that are germline ( hereditary) or sporadic. When examining a patient's family history it is important that both the maternal and paternal sides of the family are examined.
As an example, Ms Vig mentioned how BRCA mutations increase a person's risk for breast, ovarian and pancreatic cancers. Every person has two of each gene. When you have a germline mutation the mutation comes from the egg or sperm. If you are born with a BRCA mutation in one gene and over time you should develop a BRCA mutation in the second gene you can develop cancer. When you have a sporadic cancer you are born with no mutations in either gene but over time for some reason both your genes develop a BRCA mutation which can lead to cancer. So there are less steps to go through when you start out with a hereditary mutation to develop cancer. And it also explains why most sporadic cancers develop later in life since it takes more time for the mutations to occur.
Ms Vig also talked about incidental findings on genetic testing results. A framework needs to be developed regarding how to share those findings with patients. Interpreting the complex genetic test results many patients receive should be done by a trained genetic counselor. (I agree 100%.)
The final speaker of the morning, Dr Eric Singer , RCINJ spoke on Ethical Issues in Precision Oncology. Dr Singer's talk began with a discussion of clinical trial design and informed consent. Do patients really know that the trial they are taking part in is for research and may not offer them any benefit? Dr Singer also mentioned incidental findings and how those findings should be shared with patients. Dr Singer mentioned that is is important that health care providers protect patients from misinformation.
He also stressed the need for oncologists to know their patient's goals. Part of the discussion could include the cost the patient will have to bear when taking new expensive targeted therapies.The patient / health care provider discussion could include: Will the treatment extend survival? Will the treatment have toxic side effects? What patient reported outcomes have other patients provided? Is the decision to use the treatment performance-based or value-based?
I was happy to see in each of the presentations the patient being central to the treatment decision.
After the Forum I took some time to view the posters outside the Multi-purpose room. Here is one of particular interest to those with ovarian cancer.
Impact of Body Mass Index on Ovarian Cancer Survival Varies by Stage
Elisa Banderas et al
This study looked at the impact of obesity on ovarian cancer survival
It included over 1100 women with epithelial ovarian cancer diagnosed between 2000-2013 at Kaiser Permanente Northern California. "There was no evidence of an association between BMI( body mass index) on overall or ovarian cancer-specific survival" but they found a strong association by stage.
Conclusion: "Associations of obesity with ovarian cancer survival differ by stage, with decreased survival among those with localized disease and increased survival among those with late-stage disease. "
I look forward to next year's Retreat.
Dee
Every Day is a Blessing! Thankful for the doctors, researchers and staff throughout the state of NJ who are striving to understand cancer and make their patient's lives better.
Tuesday, May 9, 2017
Public Forum - 2017 Annual Retreat on Cancer Research in NJ
The Annual Retreat on Cancer Research in New Jersey is hosted by the Rutgers Cancer Institute of NJ and the New Jersey Commission on Cancer Research. The event includes poster sessions and mini-symposium on research by expert NJ researchers.
The day also includes a Public Forum. I have been lucky to have attended a few of the public sessions over the past few years. Last year's public forum topic was Survivorship. This year, the topic is Precision Medicine.
The topics of discussion will be:
The Promise and Practice of Precision Oncology
Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy
Ethical Issues in Precision Oncology.
This years event will take place on May 25, 2017 (8:30-10:00 am) at the Rutgers College Avenue Student Center.
Registration is free.
Please register on the following website: http://www.mpi-evv.com/2017NJCR/2017PFReg.asp
I've already registered for the event. How many of my fellow advocates and survivors will join me?
See you on the 25th!
Dee
Every Day is a Blessing!
The day also includes a Public Forum. I have been lucky to have attended a few of the public sessions over the past few years. Last year's public forum topic was Survivorship. This year, the topic is Precision Medicine.
The topics of discussion will be:
The Promise and Practice of Precision Oncology
Capturing the Spectrum of Hereditary Cancers: A Moving Target in the Setting of Targeted Therapy
Ethical Issues in Precision Oncology.
This years event will take place on May 25, 2017 (8:30-10:00 am) at the Rutgers College Avenue Student Center.
Registration is free.
Please register on the following website: http://www.mpi-evv.com/2017NJCR/2017PFReg.asp
I've already registered for the event. How many of my fellow advocates and survivors will join me?
See you on the 25th!
Dee
Every Day is a Blessing!
Wednesday, April 12, 2017
Speaking Out About NIH Budget Cuts
I was invited by Rutgers Cancer Institute of New Jersey to speak at the press conference Senator Bob Menendez was holding after he toured the Cancer Center. The press conference highlighted the impact cutting the National Institutes of Health budget by 18% would have on researchers, oncologists and patients.
Here are the main points I made during the speech.
Here are the main points I made during the speech.
I am here today because of cancer research funded by the
National Institutes of Health. The successful treatment of my cancer at the
Rutgers Cancer Institute of New Jersey has been key to my survival. I was first
diagnosed with stage three ovarian cancer in 2005, one of over 700 women
diagnosed that year in NJ. After my surgery, I took part in a clinical research
trial and after nine chemotherapy cycles, I was told I was disease free. When the
tumor returned in 2008 I had surgery, 6 more rounds of chemotherapy and was
once again disease free. The treatments I
underwent were available to me because of research supported by the NIH.
In the almost 12 years since my diagnosis I have seen major
developments in treating cancers like mine – all due to research funded by the federal government.
In 2006, a study was released that said intra peritoneal
chemotherapy offered a survival benefit for women with ovarian cancer. We know this because of NIH funded research.
In 2011, the Cancer Genome Atlas, a project funded by the
NIH, identified new mutations linked to ovarian cancer. This knowledge has led
to new treatment strategies. We know this
because of NIH funded research.
We saw the FDA approve a number of new therapies that
specifically target ovarian cancer, reducing toxicity and maximizing
anti-cancer efficacy.
We have these treatments
because of NIH funded research.
Today work continues to develop immunotherapies to treat
ovarian cancer.
We have these new
developments because of NIH funded research.
Progress is being made and now is not the time to reduce NIH
funding.
A proposed 18% reduction in funding would stagnate key
research and reduce the number of investigators trying to understand the causes
of the disease and developing cures for many types of cancer. This in turn will
impact the lives of many residents in NJ who have been or will be diagnosed
with the disease in the future.
As a Board member of the local Kaleidoscope of Hope Ovarian
Cancer Foundation I have seen the impact grants can make in the career
development of young cancer investigators. Many researchers supported by KOH
have gone on to receive grant awards from the NIH. The Federal government’s support
of cancer researchers, especially young investigators who wish to study rare
cancers, is very important to me and other women who may develop gynecologic
cancers in the future.
Cancer is not partisan, it does not care what religion you
are, what the color of your skin is, what your age or sexual preference is. The
only way we as a country will learn how to reduce our risk for disease, find
better treatments, find a cure and support survivors is through cancer research
funded by the National Institutes of Health.
Thank you.
Dee
Every Day is a Blessing!
Monday, March 27, 2017
Cancer Support Community and Rutgers Cancer Institute of New Jersey Programs
I want to share with my readers two programs brought to you by the Cancer Support Community of Central NJ and Rutgers Cancer Institute of New Jersey .
A New Support Program:
This other program being offered I took part in a few years ago when I finished treatment for my recurrence. I learned exercise techniques and nutritional tips during Cancer Transitions that I still use today. You should definitely consider joining the 6 week series.
A New Support Program:
This other program being offered I took part in a few years ago when I finished treatment for my recurrence. I learned exercise techniques and nutritional tips during Cancer Transitions that I still use today. You should definitely consider joining the 6 week series.
Dee
Every Day is a Blessing! Blessed that the needs of cancer survivors are being addressed.
Wednesday, March 15, 2017
SGO Meeting Highlights via Twitter ~ Day 4, March 15
Updated with additional tweets 7:32 pm 3/15/17.
Today was the last day of The Society of Gynecologic Oncology (@SGO_org) Annual Meeting (#SGOmtg). Believe it or not as I type this the snow is falling again.
Here are some tweets I found interesting today.
Patient Preferences:
WRITE Symptoms Study (GOG 259):
A big shout out to all the researchers, gyn oncs, advocates and others who tweeted from the meeting.Thanks!
I look forward to April's #gyncsm chat (April 12, 2017 at 9pm) recapping this year's meeting.
Dee
Every Day is a Blessing!
Today was the last day of The Society of Gynecologic Oncology (@SGO_org) Annual Meeting (#SGOmtg). Believe it or not as I type this the snow is falling again.
Here are some tweets I found interesting today.
Patient Preferences:
WRITE Symptoms Study (GOG 259):
TY Dr. Donovan for very imp work symptom mgmt & intervention for women living with recurrent #ovariancancer. Understudied! #SGOmtg #gyncsm pic.twitter.com/F0BWU6wts0— Annie Ellis (@Stigetta) March 15, 2017
@womenofteal top 10 for symptom mgmt: fatigue sleep-disturbance pain anxiety neuropathy constpation memory nausea bloating drowsiness pic.twitter.com/92ySkxfMlZ— Annie Ellis (@Stigetta) March 15, 2017
— Annie Ellis (@Stigetta) March 15, 2017
— Annie Ellis (@Stigetta) March 15, 2017
Palliative Care:Cohn: Understanding patient pref re toxicities critical 2 enhancing shared decision making. YES!!! #SGOMtg Need tools along tx continuum pic.twitter.com/g4kFW1QSLW— Annie Ellis (@Stigetta) March 15, 2017
Nevadunsky: Early palliative care assoc w/improved quality of end of life care #SGOMtg #gyncsm Diverse study population! Very important! pic.twitter.com/8Zss67Ywpr— Annie Ellis (@Stigetta) March 15, 2017
Ovarian Cancer:"Early palliative care is feasible & increases access 4 ethnically/racially diverse women w/ Gyn cancers." Dr. Nevadunsky @SGO2017 #SGOMtg— Carol Brown (@drcarolbrownMSK) March 15, 2017
Myriad data presented at #SGOMtg confirms older mean age at diagnosis of #ovariancancer in BRIP1 and RAD51C germline mutation carriers.— Douglas Levine MD (@levinemd) March 15, 2017
Cervical CancerChemotherapy Induces Molecular Changes in High-Grade Serous Ovarian Carcinoma #SGOMtg https://t.co/jzLlJXBQtB— Linus T Chuang (@linuscmd) March 15, 2017
2017 #SGOMtg coverage: High rates of persistent opioid use 6 months after RT for cervical cancerhttps://t.co/DIRlIn5fdl pic.twitter.com/UMWPurj87c— SGO (@SGO_org) March 15, 2017
A big shout out to all the researchers, gyn oncs, advocates and others who tweeted from the meeting.Thanks!
I look forward to April's #gyncsm chat (April 12, 2017 at 9pm) recapping this year's meeting.
Dee
Every Day is a Blessing!
Tuesday, March 14, 2017
SGO Meeting Highlights via Twitter ~ Day Three, March 14, 2017
I am at home watching the snow fall and following Tweets from The Society of Gynecologic Oncology (@SGO_org) Annual Meeting using the hashtag #SGOmtg.
Here are some tweets fromTuesday, March 14,2017 ( Pi day!)
Other sources of Meeting coverage:
GOG-3003 Compares pegylated liposomal doxorubicin (PLD) to PLD in combination with motolimod (a new type of investigational drug that stimulates the immune system)
Cervical Cancer
AXAL :Phase 2 study axalimogene filolisbac (AXAL), in patients with persistent or recurrent metastatic (squamous or non-squamous cell) carcinoma of the cervix
Dee
Every Day is a Blessing!
Here are some tweets fromTuesday, March 14,2017 ( Pi day!)
Other sources of Meeting coverage:
Endometrial CancerStay up to date on the #SGOMtg with our conference coverage! https://t.co/dzpWAtqAlW— CURE Magazine (@cure_magazine) March 14, 2017
MMR Deficiency Linked to PD-L1 Expression in Endometrial Cancer https://t.co/E0LI2OzxDO #SGOmtg— OncLive.com (@OncLive) March 14, 2017
Ovarian cancerSentinel lymph mode mapping is #costeffective for the treatment of #endometrial cancer! #SGOMtg #gyncsm #endcancer great job @SuidanRudy https://t.co/uZxo7RB7NV— Shannon Westin (@ShannonWestin) March 14, 2017
GOG-3003 Compares pegylated liposomal doxorubicin (PLD) to PLD in combination with motolimod (a new type of investigational drug that stimulates the immune system)
SOLO2 Trial studied LYNPARZA as maintenance treatment for women with BRCA-mutated metastatic ovarian cancerMotolimod is an agonist for TLR8 in GOG-3003. Combo with PLD in #ovariancancer had no improvement in OS or PFS. #SGOMtg— Rebecca Previs (@BeccaPrevisMD) March 14, 2017
SOLO2 primary endpoint was PFS, not OS (key secondary endpt) #SGOMtg— Don S Dizon (@drdonsdizon) March 14, 2017
SOLO2 data presented at #SGOMtg: PFS advantage in olaparib maintenance arm for BRCAmut recurrent ovary cancer. Compelling. #parpi— Jenny Mueller MD (@JennyMueller_) March 14, 2017
SOLO2: Time to First Secondary Treatment- 27.9 months vs 7.1 (HR 0.28; p <0.0001) in favor of olaparib - WOW!!!! #SGOMtg— Tabari (@Tabari_B) March 14, 2017
— Don S Dizon (@drdonsdizon) March 14, 2017GOG-212
Late breaking abstract time. First up GOG212. #SGOmtg pic.twitter.com/qcprT7KBBp— Annie Ellis (@Stigetta) March 14, 2017
#SGOMtg #GOG212: example that more treatment is not always better.No improvement in OS despite slight PFS improvement.— Deanna Teoh, M.D. (@DeannaTeoh) March 14, 2017
GOG212: Surveillance v Taxol x12 vs CT2103 x12. Primary endpoint OS. #SGOMtg Activated 12 years ago!— Don S Dizon (@drdonsdizon) March 14, 2017
StressBoth Taxol and CT-2103 showed clinically meaningful and worse neurotoxicity vs surveillance in GOG212 @copebuckeye #SGOMtg— Don S Dizon (@drdonsdizon) March 14, 2017
Uterine CarcinosarcomaFascinating research approach integrating basic science and big database looking at drug combo and stress in ov ca from @DrRobDood #SGOMtg pic.twitter.com/fsn0nB0ptE— Katie Kurnit (@katiekurnit) March 14, 2017
TP53 mutations are most common in our study of carcinosarcoma #uterinecancer @nicoleflemingmd #endcancer #SGOMtg pic.twitter.com/maPL5RROhA— Rebecca Previs (@BeccaPrevisMD) March 14, 2017
Cervical Cancer
AXAL :Phase 2 study axalimogene filolisbac (AXAL), in patients with persistent or recurrent metastatic (squamous or non-squamous cell) carcinoma of the cervix
Improved OS over historical controls with AXAL in recurrent #cervical cancer! Big news. #SGOMtg #gyncsm https://t.co/whlS6QOBBi— Shannon Westin (@ShannonWestin) March 14, 2017
GeneralAXAL: live attenuated listeria based immnotherapy that secretes HPV-16 E7 protein fused with a truncated fragment of listeriolysin O #SGOMtg— Don S Dizon (@drdonsdizon) March 14, 2017
#quality research improves outcomes! Reduced blood transfusions = less cost and better outcomes. Great job @LPrescottMD #SGOMtg #gyncsm https://t.co/FJpqGHRDXe— Shannon Westin (@ShannonWestin) March 14, 2017
So thankful for a glimpse via tweets of research that can change the future of women with gynecologic cancers.Sunrise Session. Dr. Annunziata says Phase 2/3 trials and inclusion of biomarker targeting/analysis are the future #SGOMtg— A.C. Evans, MD, PhD (@gynoncdoc) March 14, 2017
Dee
Every Day is a Blessing!
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