Monday, July 20, 2015

Out with the Ovaries

 Updated 7/21/15
The other day there was a discussion in a Facebook group I belong to about what happens when a women has her ovaries removed ( oopherectomy) prophylactically.  I thought to myself - prophylactically or due to surgery / chemotherapy -  the effects are the same.

I know which side effects I experienced when I  had my ovaries (along with other organs) removed due to ovarian cancer. Even if your ovaries are not surgically removed, they may be damaged due to chemotherapy which can cause menopause and infertility. 

What can happen? Symptoms you may experience when your ovaries are removed include:
  • hot flashes / night sweats
  • vaginal dryness
  • decreased sex drive
  • skin changes
  • sleep disruptions
  • urinary symptoms
  • bone loss (osteopenia/ ) osteoporosis
  • fatigue
  • weight gain 
  • trouble focusing
  • increased risk for heart disease

So how do we deal with these side effects?

There are various ways to help with the symptoms of menopause including hormonal therapies, non-hormonal therapies, complimentary therapies and bioidentical hormones (FDA statement on bio-identicals) .  Be sure to ask your doctor which therapy is acceptable for you to use if you are in treatment or at risk for breast cancer / ovarian cancer.

Some helpful resources include:

This American Cancer Society article on menopause and cancer risk is a good place to turn for information on options you can talk to your doctor about. (http://www.cancer.org/cancer/cancercauses/othercarcinogens/medicaltreatments/menopausal-hormone-replacement-therapy-and-cancer-risk. )

The NCI has a brochure Health Care Maintenance for Women Undergoing Risk-Reducing Ovarian Surgery ( GOG 0199) as well as  a number of online resources on dealing with the side effects of premature menopause. The resources may be found at
http://ovariancancer.gog199.cancer.gov/premature.html

You may also find the Menopause Guidebook from the the North American Menopause Society) helpful. Download it at http://www.menopause.org/publications/consumer-publications/-em-menopause-guidebook-em-7th-edition

Another good source of information is the US National Library of Medicine's Medline Plus site on Menopause . http://www.nlm.nih.gov/medlineplus/menopause.html#cat77

Many of the pre-menopausal women diagnosed with ovarian cancer I have spoken to have gotten limited information on dealing with the side effects of menopause.  It is important that valuable resources like those listed above are part of the conversation that women have with their health care provider when their ovaries are removed prohylactically or due to a cancer diagnosis.

Dee
Every Day is a Blessing!

Wednesday, July 15, 2015

Choices

You have a choice each and every day
I choose to feel blessed
I choose to feel grateful
I choose to be excited 
I choose to be thankful
I choose to be happy. 
          - Amber Housley

A friend and ovarian cancer survivor on Facebook posted a photo with these words on it today.

I instantly thought of the gynecologic cancer support group I went to this week. Most of the women are living with disease and two of us are NED(no evidence of disease). We talked about our treatments and side effects and then we started to talk about J. At our May meeting J told us she was stopping treatment and was moving to New England to be with her mom, family and friends.I wrote about it in this blog post. Not one of us told her that it was a bad decision . Not one of us told her to continue in treatment. Even though we all knew what would happen - eventually.

Eventually was June 21st. All of us thought she passed away too quick. We wanted more time with her - talking on the phone, texting, e-mailing or maybe even getting a chance to visit. We talked about the wonderful handbags she created. We were sad. But we were also grateful that she felt close enough to all of us to share her deepest fears and needs.  We were happy that we could tell her how much she meant to us. We were grateful that J had some time in a beautiful spot in New England.

Picture from J of the view from her home.

I am happy she let us be a part of her life. I will always admire her for making the choice she did.

Dee
Every Day is a Blessing! 

Monday, July 13, 2015

Anxiety and Putting Things in Perspective

Last Wednesday's #gyncsm topic was Dealing with Anxiety. As usual when preparing for a chat I researched some resources and thought about my own personal responses to the questions we were asking. You can find the questions etc on this page.

When I was diagnosed I felt anxious about :
My port functioning correctly ( It worked for 9 years.) 
The chemo working 
Getting an infection when my blood counts were low (This never happened)
Waiting for CA-125 results
Waiting for CT scan results (Frequently called Scanxiety by patients and survivors.)
Having enough energy to get anything done around the house.

When my treatments ended and I was in remission I became anxious with every ache and pain in my abdomen and pelvis or with every upset stomach. Then I recurred and all the things that made me anxious when I was in treatment initially came right back to haunt me. And then of course I added a few new anxiety provoking things. My cancer recurred on my liver and spleen so I worried after surgery about not having a spleen. Then I became anxious when I experienced a severe allergic reaction to carboplatin and needed to be on taxol only. Would a single agent do the trick?

Over time I learned to deal with my anxiety although even while NED ( no evidence of disease) these past few years I still get anxious waiting for scan and  CA-125 results.

Then a few weeks ago something different happened. I hurt my knee. It was a weird pulling type of feeling and in a day or two it was back to normal. Then two weeks ago I felt it again and then last Thursday night after working with my dog outside - POW - the pain was so intense.

The next morning I couldn't put my left foot down without feeling a pain behind my knee. A quick trip to my primary care physician lead to a referral to a orthopedist ( which happens next week) for a possible torn meniscus. I also got instructions to rest it and ice it. The pain I could deal with by taking a few Advil. But what upset me most was that I had to cancel plans I had for the weekend. Canceling those plans raised the same feelings I had when I was in chemo and had to miss so many events with family and friends.

Then the "not knowing"anxious feeling came back too.
Not knowing what the actual diagnosis for my knee pain will be.
Not knowing what the treatment would be.
Not knowing how long it will take to heal.

I was telling my husband how I was feeling and he turned to me and said "You got through cancer treatments you can get through this too". Kind of put it all in perspective.

Dee
Every Day is a Blessing!






Friday, June 26, 2015

Science , Communities and Life with Cancer- The 3rd Annual AstraZeneca Bloggers Summit

On June 24th,  I attended the 3rd Annual AstraZeneca Bloggers Summit.  The day gave me an opportunity to meet other bloggers and to learn about social media and topics of interest to cancer patients and survivors.

What I learned at the Summit can be separated into three areas-science, communities and life with cancer.

The Science:
Photo provided by AstraZeneca
Deborah Torgersen-Paul, PhD (Executive Medical Science Liaison, AstraZeneca) presented the Evolution of Science and Understanding Cancer. Dr Torgersen-Paul began her presentation with a discussion of how the Human Genome Project changed our understanding of cancer.  She then went on to explained the role of oncogenes, tumor suppressor genes, cell death from chemotherapy and apoptosis( a cells normal death). She described driver mutations and how small molecules (such as Parp inhibitors) are used. She also discussed immunotherapy (which I heard a lot about while at the ASCO meeting this year). Some cancers don't stimulate the immune system as well as others so if we can find ways to boost our body's immune system the better we can destroy the cancer cells.  She also described work going on in immuno-oncology in which chemotherapy and immunotherapy are given together.  Lastly, she spoke of the research into circulating tumor DNA (ctDNA) , also  called a liquid biopsy,  and its role in screening for different cancers.

 After the presentation we took a tour of the Phase 1 laboratories at MedImmune where the Summit was held.
Oncology Bloggers at the Summit had the opportunity to see the MedImmune Phase1 labs.

Our Communities:

Photo provided by AstraZeneca
Ciaran Blumenthal (@momfluential) , a social media and marketing expert provided insight into "The Story of Us: Best Practices for Growing Communities Online". We ( the oncology bloggers)  were all at the summit because we share our story with a community of followers. Ciaran began by defining a community and the differences between online and "in real life" communities. She then talked about how characters can develop the community - content creators, experts, influencers and supersharers. She stressed the importance of the Hashtag in social media. From my own experience, the #gyncsm hashtag has been important in growing and sharing information among members of the gynecologic cancer community especially between our monthly chats. She then went on to discuss online platforms - blogs, Instagram, Twitter, YouTube, Pinterest and the strategies that can be used to grow a community. She stressed how content is key!

Life with Cancer:

Photo provided by AstraZeneca
Sage Bolte PhD, director of Life With Cancer,  presented the afternoon sessions geared toward different aspects of living with cancer.

Did you know that patients should be asked their distress level at each doctor visit? Studies have shown that 50% of all cancer patients experience a high level of distress ( emotional , mental, social, spiritual) during treatment. Lung, pancreatic and brain cancer patients report the highest levels. One in four cancer patients will experience depression. It has also been found that patients with lower quality of life experience more depression. When a person has situational depression it has been found that as the stressors patients experience subside so does the depression . When clinical depression occurs medication and therapy( cognitive or behavioral) may be prescribed.

Then Dr. Bolte talked about anxiety and fear.  I could definitely relate. To this day when I have to have a CA-125 test or CT scan my anxiety level shoots through the roof.  And it was good to see some of the things I use to calm down were listed in Dr Bolte's list of things to do to deal with anxiety.
  • Stillness- prayer, mediation, allow to grieve, acknowledge ( I have a favorite mantra.)
  • Motion- exercise, journaling, etc ( I love to paint when I am  anxious.)
  • Ignore- this is ok for short periods of time ( When I learned my friend had passed last month I did choose to ignore it for a few hours. )
For the last session of the day, Dr. Bolte talked about Sexuality and Intimacy. Health care providers are as reluctant as patients to discuss the impact surgery and treatment have on the sexual life of their patients. A number of sexual challenges occur when a person has cancer:
  • Cancer itself
  • Psychological Distress
  • Cancer Therapy
  • Side Effects
  • Alterations in relationships
One of the physical problems associated with the instant menopause many women enter into after gynecologic cancer surgery or due to cancer treatment is vaginal stenosis- a narrowing of the vaginal canal. There are a number of techniques ( dialators, lubricants ) that can be used when the condition develops.

As I was listening to Dr Bolte I noticed that the key word she kept using was communication. Cancer patients / survivors should communicate with their partner, spouse, family, friends and physician so everyone is aware of what you need and don't need. I can agree with that 100%.

One of the best parts of the Summit was being able to spend time with the other bloggers. Since I follow most of the bloggers online it was wonderful meeting them in person. Below is a list of my fellow blogger's names as well as links to their blogs and twitter handles. 

Katie Brown - Lung cancer
Website/blog: www.lungevity.org & www.iamkatiebrown.com 
Twitter @LUNGevity & @brownbeansprout
 

Dian “CJ” Corneliussen-James - metastatic breast cancer
Blog http://www.metavivor.org/blog/
Twitter @METAvivor

Katherine O'Brien - metastatic breast cancer
Website https://ihatebreastcancer.wordpress.com/
Twitter @ihatebreastcanc

Jennifer Campisano- metastatic breast cancer
Blog http://www.boobyandthebeast.com/
Twitter @Jcampisano

Alana Ray Osborne  - general cancer
Blog: http://www.powerfulpatients.org/blog/
Twitter @alanaray40

Thank you AstraZeneca and MedImmune for such an informative day!

Dee
Every Day is a Blessing!




Tuesday, June 23, 2015

Natural Ways to Deal with Menopause and Hot Flashes Caused by Surgery for Ovarian Cancer - Guest Post by SHARE


I am pleased to provide my readers with this guest post by SHARE Cancer Support, a non-profit dedicated to providing support for those suffering from breast cancer or ovarian cancer.
Natural Ways to Deal with Menopause and Hot Flashes Caused by Surgery for Ovarian Cancer

There are many changes a woman’s body goes through during menopause; however, for those women who have just had surgery to treat ovarian cancer, the effects of instant menopause can be exacerbated. The most bothersome effect for many women is the onset of hot flashes. There are many treatments women can try to find some relief, and following are some of the most effective natural ones:


Keeping Cool
Exposure to cold can help relieve a hot flash – sipping cold beverages and maintaining a cool environment. Dressing in layers can help women shed clothing quickly to deal with temperature changes; this also applies to layering sheets and blankets at bedtime. Sleeping in the nude also helps women dealing with the hot flashes of menopause by dissipating the heat of night sweats. Using cooling pillows, fans and gel cooling packs can also help considerably.
Acupuncture
As a part of traditional Chinese medicine, acupuncture has been practiced for over 4,000 years, and is based on the idea that vital energy flows through the body along 20 pathways, or meridians. When a pathway is blocked, the body is thrown off balance. The goal of acupuncture is to remove blockages.
Many women have found relief from hot flashes with acupuncture, and many believe it can provide patients with significant relief from the side effects of cancer and treatment. Hot flashes are reported by many to decrease in frequency and in strength. One study among women with hormone receptor-positive breast cancer showed that acupuncture had the equivalent effects of venlafaxine, an anti-depressant, and the effects of acupuncture lasted longer than those of the drug.
Change Your Diet
Many women find that dietary changes can help relieve hot flashes by limiting or avoiding foods that trigger them. Certain foods that can trigger hot flashes include caffeine, spicy foods, chocolate, and alcohol. Women can also try eating more plant-based foods that contain phytoestrogens to reduce hot flashes; these phytoestrogens resemble estrogen and are found in nuts, soy products, legumes, and oil seeds. While some women reported a decrease in the severity of hot flashes, some reported that the number of hot flashes did not decrease.
Managing Stress
Effectively managing and relieving stress can also be an effective way to deal with the hot flashes of menopause caused by surgery for ovarian cancer. Deep, paced breathing can reduce the frequency of hot flashes by 50%. Breath should come from deep inside the abdomen, at about six deep breaths per minute.
We’ve all heard of the “fight or flight” response – the term “relaxation response” is used to describe the opposite of the “fight or flight” response, and is characterized by a slower heart rate and measured breathing. Meditation, getting into a comfortable, relaxed position in a quiet room, and paced breathing are all effective at invoking this relaxation response, effectively decreasing the intensity and severity of hot flashes.
It’s important to keep in mind that just as every woman is unique, so too are her experiences with the methods used for coping with the symptoms of instant menopause after surgery for ovarian cancer. Your health care providers, your friends and family, support groups, and other support systems are excellent resources for learning more about the possibilities various treatments might be able to provide for you.
 

Thank you SHARE for these helpful tips! 
(Dee's Note: Please be sure to check with  your doctor before adding phytoestrogens / soy  to your diet.)


Dee 
Every Day is a Blessing!  

Friday, June 12, 2015

ASCO Knowledge Part V: CancerLinQ

“Shoppers have Amazon.

Students have Google.

Oncologists will have CancerLinQ”

-CNN

That quote appeared on a brochure I saw at ASCO and it peaked my interest in a special patient advocate session that was being held to introduce us to CancerLinQ, a health information technology platform. In January of 2015, ASCO and SAP, a software company teamed up to create a Big Data software platform. 

ASCO’s Chief Medical Officer, Rich Schilsky began the session by sharing some important facts with the advocates.
Only 3% of adults participate in clinical trials. 
Older adults (>65)  may not qualify to participate in clinical trials so their outcomes and adverse effects may not be known by others who also treat older adults. 
As more drugs get approved through the quick FDA approval process there is a need to capture the knowledge that is being generated as patients use these drugs.  
Currently cancer patient data is in “silos”( my word choice) at various cancer centers – NCI centers, academic centers, and community oncologist groups.

 CancerLinQ will gather data from patients from around the country into a secure, searchable database. 

CancerLinQ In A Nutshell
Electronic Medical Records (EMR) of cancer patients will be collected, “de-identified” and entered into the database. Once the data is entered an number of things can take place:
-Providers can compare the care they provide to guidelines.
-Oncologists can search the database for patients with similar attributes, diagnosis, mutations, and treatments. The oncologists can then with their patients decide which treatment plan is best.
-Researchers can look for patterns in the patient data

In the fall of 2015, the first version of CancerLinQ will roll out and include 500,000 individual records from 15 oncology practices in the US. 

For more information please visit CancerLinQ.org


Dee
Every Day is a Blessing!

Thursday, June 11, 2015

ASCO Knowledge Part IV: Hashtags for Online Cancer Communities

As co-founder and co-moderator of the #gyncsm chat, I was so happy to see #gyncsm supporters Dr. Matthew Katz and Dr. Don Dizon  collaborating  with others to present the poster Disease-Specific Hashtags for Online Communication About Cancer Care at the ASCO meeting.

Cancer patients are online gathering information. Some active communities - #bcsm Breast Cancer Social Media) , #btsm 9 Brain Tumor Social Media) have been in existence since 2011 / 2012.
The #gyncsm was founded in 2013. In July of 2013 Matthew Katz and Patricia Anderson developed and shared online a disease-specific ontology (structured tags without pre-existing use). A finalized version was posted online in November of 2013 and included many of the hashtags talked about in this research.

Using the application program interface, Symplur Signals, the researchers analyzed data from 25 hashtags. They were able to classify the 100 most active users by user type, analyzed the number of tweets and the activity over the time period ( Second Quarter 2013 -Third Quarter 2014.

Poster Highlights:
During that time period researched 77,554 users tweeted with the disease-specific hashtags. 
Two tags, #BCSM and BTSM were the most active and were also used for the longest period of time.
The most active new tags were #aycasm, #gyncsm, #lcsm, #mmsm and #pancsm.
The most active top users were patients.

Overall users were 11% patients, 20% doctors, 3% non-doctor health care professionals, 32% individual, 30% health organization, 1% other and 3% spam.

Right side of the Disease-specific Hashtag poster
The stakeholders using the  #gyncsm hashtag were 33% other individuals, 30% health care organizations, 13% patient, 17% doctor and 7% non-doctor health care provider. As the moderator of the #gyncsm chat I found this data interesting and helpful in planning future chats.

The conclusion of the study was that hashtags could organize the online discussion of diseases and that hashtags can be used by a variety of stakeholders. Further study as to whether the Cancer Tag Otology improves access to accurate information or impact clinical patient outcomes needs to be done.


Dee
Every Day is a Blessing!