Have You Considered Pelvic Floor Therapy?

In 2018, the #gyncsm community chatted about Pelvic Health After a Gyn Cancer Diagnosis. We discussed how treatments for gynecologic cancers affect pelvic health. We also talked about pelvic floor physical therapy and how it can help alleviate many of the pelvic issues including pain and dysfunction such as urine leakage. 

"Pelvic heath involves the entire area of the bony pelvis, lower abdomen, genitals, reproductive organs, muscles, bowel/bladder/sexual function, nerves...and more." "GYN survivors often have bladder/bowel issues after radiotherapy & surgical treatment." (#gyncsm chat 12/12/18 transcript) 

When the muscles in the pelvic floor are weak or don't function properly then pelvic dysfunction may happen. In addition to surgery, radiation such as brachytherapy ( internal radiation used to treat cervical, endometrial and other cancers ) can also effect the pelvic floor muscles as well as issues due to aging, being overweight, injury and pregnancy.

Pelvic floor therapy is a specialized therapy for those with pelvic floor dysfunction. Exercises can help strengthen muscles, increase range of motion and help restore the function and eventually get you back to a normal routine. 

The Mayo Clinic , when discussing physical therapy states:

"Stretching exercises, massage and other relaxation techniques may improve your chronic pelvic pain. A physical therapist can assist you with these therapies and help you develop coping strategies for the pain. Sometimes physical therapists target specific points of pain using a medical instrument called transcutaneous electrical nerve stimulation (TENS). TENS delivers electrical impulses to nearby nerve pathways. Physical therapists may also use a psychology technique called biofeedback, which helps you identify areas of tight muscles so that you can learn to relax those areas."

When I saw my advanced practice nurse last year I discussed some issues I was having. She thought it was a good idea to try physical therapy and gave me info on a physical therapists in North Jersey. 

When I got home I remembered a zoom workshop I watched during Covid on Menopause and Pelvic Health given by the same physical therapy group I had used when I had issues with my knee. So I reached out. 

In December, I started the pelvic floor therapy with Theresa Feeley, DPT from Atlantic Physical Therapy. I had thought I had been doing the Keegal exercise correctly but I had not. The physical therapist went over the correct way to do it as well as  breathing techniques while laying down and standing. She also asked me to keep a diary of what I ate and what I was doing when issues occurred. I found that I would use the restroom before I left the house even if I might have gone 15 minutes before. It didn't matter if I was going to be out for a few hours or a quick run to the post office I would go. In effect I had programmed myself to go and of course my bladder worked accordingly. So I was "going" more that I really needed to.  I had to consciously tell myself that in most cases I did not need that extra trip to the rest room. 

Using the diary I found that I had more issues when I had caffeinated beverages. So I have cut back on caffeinated tea, soda and coffees.

Between visits I perform the exercises and follow the breathing techniques especially when bending over during yoga and Jazzercise.  Here I am, a few months later, and I have seen a significant improvement.  

 I urge other women who have issues with leaking etc to speak to their health care provider and ask for a referral for pelvic floor therapy. I'm happy I did!

 

Dee

Every Day is a Blessing. 

Chemo Induced Peripheral Neuropathy - Participating in a Clinical Trial

   
Recently my friend, Lynn, shared with me what she had learned during the Foundation for Women's Cancer Ovarian Cancer Survivors Course held in October at the Summit Medical Group. One session on chemotherapy induce peripheral neuropathy was presented by Timothy Marshall, PhD a Professor of Physical Therapy at Kean University ( Union, N.J.). Knowing I have experienced neuropathy she thought I might be interested in a clinical trial he was running and she sent me his contact information.  I contacted Dr Marshall in November to learn more about his trial Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk.

Chemotherapy induced peripheral neuropathy can be numbness, tingling, pins and needles and pain in the toes and fingers. I experience this in my toes and have mentioned it in a few entries in this blog. Dr. Marshall sent me the Informed Consent form for the trial and we set a date to be evaluated in December. 

Last week I went to the Kean University Campus to take part in the trial. This was a relatively easy trial - as trials come -  to participate in. I shared with Dr. Marshall the chemotherapy drugs I had received, their dosage and the number of cycles I had during my initial and recurrence chemotherapy treatments. He asked about the level of exercise I currently take part in and measured my height and weight.

Then the actual evaluation started. The first test was to measure my hand grip strength.  I was asked to squeeze a handgrip dynanometer (3 times in each hand). 
Next after taking off my shoes and socks I was asked to sit on a table. and close and cover my eyes.  Dr. Marshall touched my feet and toes using a Jamar Microfilament - a very thin bendable wire, to assess sensation in my feet.   I was told to respond when I could feel the filament touch various parts of my foot. 

After putting my shoes and socks back on, a BTS G-Walk system was fitted to my waist. The BTS G-Walk system is a wireless tri- axial accelerometer. An accelerometer is an electromechanical device that measures acceleration forces. The system included EMGS placed on both my calves front and back. Electromyography (EMG) is a way to assess how well the muscles are working while I walk. I walked from one side of the room to the other a few times, all the time the Walk system was gathering data.  Lastly, I was asked to perform a ‘Timed-up and-Go' test, in which I had to stand up from a chair, walk about 9 feet, turn around and walk back to the chair and sit back down; this assessed fall risk. 

And in one hour the trial tests were complete.

I enjoyed talking to Dr. Marshall about his research including this study published in the Journal of Cancer Research and Practice Chemotherapy-Induced-Peripheral Neuropathy (CIPN), Gait and Fall Risk in older adults following cancer treatment. 

This trial is currently recruiting so if you are a physician and would like to refer a patient who is experiencing the impact of CIPN or a cancer patient/ survivor who continues to experience CIPN years after treatment or is experiencing CIPN while undergoing treatment, feel free to contact Dr. Marshall at marshati@kean.edu or call 908-737-6177. 

Thank you Dr. Marshall for doing research crucial to improving the survivorship of cancer patients. 

Dee
Every Day is a Blessing! 

Our Voices Were Heard at The SGO Annual Meeting

As you know I was not able to attend the SGO Annual meeting in person but followed the research news and announcements on Twitter. Annie Ellis, a friend and fellow ovarian cancer survivor did attend the meeting. In my two previous posts on the meeting, I included a number of her in-person tweets. 

But Annie was more than a research advocate in attendance, she was a co-author of the presentation  "Survivors Acceptance of Treatment Side Effects Evolves as Goals of Care Change over the Cancer Continuum" presented by Dr Melissa Frey, NYU Langone Medical Center.

There are a number of meaningful endpoints in clinical trials - overall survival (OS), Progression Free Survival (PS), patient reported outcomes (PRO) and quality of life (QOL). In September 2015, an FDA workshop was held on alternative endpoints. The study presented at SGO by Dr Frey brought focus on the patients perspective on these endpoints.

Melissa Frey MD, Annie Ellis, Laura Koontz PhD, Savannah Shyne MPH, Jing-Yi Chern MD , Jessica Lee MD and Stephanie Blank MD undertook this study to determine whether survivors’ acceptance of treatment side effects changes over the course of living with the disease (NED, recurrence). To do this, Annie Ellis developed a survey and reached out to the ovarian, primary peritoneal and fallopian tube cancer communities for responses to questions related to treatment side effects and patient goals. Over three hundred women participated in the survey. I was one of those 300 women.

45% of the women had a treatment goal of overall survival
41% of the women had a treatment goal of quality of life
12% of the women had a treatment goal of progression free survival
2% of the women did not respond to the question

In response to the question "What is most meaningful to you"  most women chose either overall survival or ability to engage in daily activities.

The overall response to the questions "When asked what they expected from treatment" appears below.

When you separate out the responses of women who have had a recurrence 16% expected a cure and 53% remission. These findings are significant.

Participants were then asked what side effects they would tolerate to get a cure, remission or stable disease. This slide summarizes those responses.

Looking at just those women who have recurrent disease ( n-162) whose expectation is a cure their responses to what side effects they would accept are presented on this slide.

In conclusion:

I look forward to the development of the survivors' decision tool.

Did you take part in the survey? Were the results what you would have expected?
If you didn't participate, which side effects would you tolerate to get a cure, remission or stable disease?

Thank you Annie and all the co-authors for asking women diagnosed with ovarian cancer to share their expectations with the gynecologic oncology cancer community, for reporting those results to the community and for allowing me to share parts of the presentation with my readers.


Dee
Every Day is a Blessing! Blessed to have engaged ovarian cancer research advocates like Annie Ellis working with researchers dedicated to understanding the needs and expectations of survivors.

Change- Change of Seasons, Change the Time, Change in Me

One thing about life is that there will always be change. Sometimes the change is slow. Sometimes it is so quick I want to shout out- "Slow Down".

I love the fall when the leaves change, the weather changes and we change the clock. Change is ok I just like it better when I'm the one who wants to change something. Don't we all.

Cancer caused a big change in my life. I was diagnosed - BAM - my life changed in an instant. Surgery and treatment happened but changing back to being free of disease well that went pretty slowly for me. I don't think I ever changed back to normal- at least the normal I had before I was diagnosed. I felt good but still had those side effects plus I felt I looked at things differently. No not rose-colored glasses but teal colored ones. I needed to make a difference in the world of ovarian cancer.

I was at my "new normal" for two and a half years and BAM I recurred. Another change - surgery and treatment and part way through a change in treatment ( you never can tell what changes this cancer stuff will cause!)

So I have spent the past year and a half getting back to my "new,new" normal. My feet still bother me and chemo-brain has really changed my thought process. I know what I want to say but I can't find the word or use the wrong word and don't even realize it. At a meeting this week I used bulletin board when I meant billboard. Yeah , I know both are boards but still it is a bit disconcerting.

My husband and I made a few good changes this year so far. We changed to a new home which now includes a new puppy. ( The photo above was taken 3 blocks from my new home.) I'm ready for some other changes too. I'll write about those soon.

Dee

Every Day is a Blessing! I am blessed by family and friends that did not change but rather stayed as my rocks on the journey.

iChemoDiary - Neat iPhone app

I just learned about this great new iphone app - iChemoDiary. It is made by Merck Onoclogy part of Merck and Co. Merck makes that wonderful nausea drug Emend.

The app works on the iPhone or iPod touch and an online version will be available soon.

The app uses a calendar so you can keep track of your chemotherapy appointments, treatments and medications. It also lets you track side effects like fatigue, nausea, pain, temperature etc. It even lets you make reports that you can e-mail to yourself so that you can discuss side effects etc with your doctor or nurse.

I downloaded it just to see how it works and it covers lots of what I would write out by hand on my trusty Rutgers alumni calendar. Wish I had it when I was in chemo.Thanks Merck.

For more info: ichemodiary.com

Dee
Every Day is a Blessing!