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!

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!

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!  

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!

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!

ASCO Knowledge Part III: Value Concepts in the Management of OC

This education session at ASCO covered a number of important topics early detection, personalized medicine, treatment choices and treatment costs. 

Early Ovarian Cancer : Can we find it, Can we stop it, Cane we afford it?

Usha Menon

Dr Menon practices in London , England. She  explained that ovarian cancer screening is a process . She noted that:

• picking up low grade Ovarian Cancer (OC) is different that picking up high grade OC
• 50% of OC  cancer arises in the fallopian tubes
• OC takes an average of 4 years to develop, stage 1&2 disease size is < 1cm
• Focus should be on finding low volume disease 

Her suggestions for following low risk women include:

• CA-125 over time
• Autofluorescense high resolution imaging
• Ultrasound with microbubbles
• ctDNA (circulating tumor DNA)

For high risk women Dr Menon recommended CA-125 every 4 months. In the ROCA
(Risk of Ovarian Cancer Algorithm) study 53% of the women had a CA-125 < 35 yet had invasive ovarian cancer. 

Personalized Treatment in OC:Fancy Science or Expensive Hype

Douglas Levine

There is a broad applicability of personalized medicine.

We have developed treatments for BRCA mutations so we know what to do with those but we are not too sure what to do when we learn about these other mutations. 
Some points Dr Levine made include:

• Genomic scarring may occur. It is a mechanism of DNA repair which leaves a scar or signature . Those signatures can be used to classify tumors . 
• Chemoresistant tumors contain an extensive number of alterations – including BRCA1& BRCA 2
• There are other mutations (6% of the women have a pTen mutation) but we few to date are clinically actionable. In other words we know about mutations but there are no treatments currently available for that mutation.
• Tumor tissue will change and evolve over time so it is important to profile the tumor in the time it needs to be treated.
• ctDNA ( circulating tumor DNA) can be found in blood plasma. It may be able to be used to monitor for recurrence and response .

Crossroads in Treatment :Primary Treatment Choices , Consolidation, and Postplatinum Endgame

David Spriggs

Value is patient centric. It drives care during primary treatment. Treatment cost for patients is heavily loaded in 1^st year (hospital / treatment /diagnostic /drugs) . The actual amount the physician charges is a very low percentage of that total cost.Primary surgery done by a gynecologic  oncologist increases  5 year survival of women with OC. (gynecologic -oncologist 38% , non gynecologist 30% )

Dr Spriggs presented a few new terms that I was unfamiliar with so I want to share them with you. The quality-adjusted life-year (QALY) measures the value of health outcomes. QALY combines the value of the length of life and quality of life in one number. Researchers are evaluating the cost of drugs using the ICER(incremental cost-effectiveness ratio) . From the ASCO DAILY NEWS article “Cost of Cancer Drugs Should be a part of Treatment Decisions” The estimated ICER range for the US is between $50,000/QALY and $200,000/QALY. Dr Spriggs in his presentation mentioned that the ICER for Olaparib a newly FDA Approved Parp inhibitor was $193,000 .

 Dr Spriggs noted that IP ( interperitoneal ) treatment continues to show an survival advantage and that consolidation treatment for OC using paclitaxel is more cost effective than bevaciszumab (Avastin)( Lesnock) .

Tomorrow’s post will report on ASCO’s CancerLINQ  a health information technology platform.

Dee 

Every Day is a Blessing!

ASCO: Knowledge Part II, Managing OC in Older Women

This early Sunday morning education session presented information on how to manage ovarian cancer in the older women. Many women including myself do get diagnosed at an early age but the median age for diagnosis of ovarian cancer in women is 63 years of age.

Ovarian Cancer Surgery in the Older Woman : Keep It Short and Sweet

Dr Linda Duska

Chronologic age is not the same as physiologic age and age does not define the ability of a woman to undergo surgery or medical treatment. Retrospective studies have showed that women with ovarian cancer who have no gross residual disease after surgery have better outcomes. Older women overall have a worse prognosis stage for stage than younger women. The GOG182 study found that there was a lower chemo completion rate among older women and that toxicity was higher. It has also been found that for women of age 65 and older surgery complications increase and there is higher mortality. It was recommended that an assessment tool like ones for frailty be used before considering surgery in women over 65. It was found that frail women were more likely to be obese and to have post-op complications.

Ovarian Cancer in the Older Women : Less is More

Dr Kathleen Moore

Studies that focus on the older woman are limited. SEER Medicare data shows that the use of chemotherapy in women decreases as age increases. Women > age 70 have higher hematologic toxicity and stop treatment early. A study done in France showed that while in pre-treatment and during treatment the geriatric assessment showed that depression was a poor prognostic factor. A US study, GOG 273 (women age 70 +)  showed that dose modifications , timing changes and variations on chemo schedule may help the older woman complete chemotherapy.

The EWOC ( Elderly Women with OC) studies showed that chemo toxicity could be predicted by 3 factors – depression, dependence and performance status.  The MITO-5 and MITO -6 studies found that weekly carbo taxol was associated with lower toxicity and higher quality-of-life scores.

Clinical Trials in the Older Patient: Who,When and Why?

Dr William Tew

There are not many clinical trials for older patients.

Dr Tew stated that it is important to define who your patient is and what they want. He also recommended assessing functional age not chronologic age. The Cancer and Aging Research Group has developed and assessment tool that can be used before starting chemotherapy. The assessment tool looks at factors that can predict grade 3-5 toxicities in older patients. Some of the tool variables are age, impaired hearing, inability to walk a block, decreased social activity etc.

From this session I learned that:

• better outcomes occur when older women finish chemotherapy- even if that means the dosage/timing needs to  need modified.
• Depression and poor functional ability can impact treatment success
• Age itself does not predict whether or not a woman can undergo surgery or treatment .
• Assessment tools ( fraility / performance status) should be used before surgery

Tomorrow’s post will be on Value Concepts in the Management of Ovarian Cancer

Dee

Every Day is a Blessing!