Anyone coping with breast cancer and CFIDS?

Brendatrue

I have experienced the adventure of breast cancer three times, with the last being an invasion of my chest wall in '09--which was addressed by biopsy, chemo (T/C), re-excision, and hormonal therapy (tamoxifen). I had a very difficult experience with T/C, and I never recovered to my former level of functioning. Fatigue continued to mount following chemo and throughout tamoxifen (which I still take--I cannot tolerate AIs). In January '11 I experienced a severe case of the flu, and it was like I jumped off a cliff at that point. I simply could not and did not recover, even to the level I experienced immediately prior to the flu. I developed multiple symptoms of Chronic Fatigue & Immune Dysfunction Syndrome, which my internist recognized fairly quickly. I became unable to continue my career and left employment in late April. Fortunately I was approved for SSDI and employer based LTD when I first applied. I am now challenged by living daily with complications of cancer treatment and CFIDS. I find that I am significantly more socially isolated, and I am hopeful to connect with others who find themselves in similar situations. I also posted this in another forum then realized this might be a better place. I hope to hear from someone!

jdeking

I am unfamiliar with CFIDS, but interested! I have developed auto-immune Hashimoto's after chemo/rads, and just can't seem to return to my baseline functioning as my fatigue and lack of energy are just terrible.

 Do you mind sharing your symptoms that lead to this diagnosis? Thank you!

Brendatrue

Thanks for your response. With CFIDS, the defining characteristic is debilitating fatigue which is typically made worse through exertion, such as exercise. Other symptoms include low endurance, change in mental status (for example, periods of poor concentration, short-term memory loss, word finding difficulty, mental fogginess), recurrent flu like symptoms (tender lymph nodes, sore throat, headaches, muscle and joint pain), visual disturbance (like blurred vision, sensitivity to light), dizziness and lightheadedness, impaired balance, periods of irregular heartrate, sensitivity to heat and cold. I have experienced all of the above; others with CFIDS may not experience some of the above, and may also experience a range of other symptoms, such as GI problems, night sweats and chills, low-grade fever, numbness and tingling. It is a controversial diagnosis, likely because there has been inadequate research to establish causes, parameters of the illness, and treatment.

Following my cancer treatment, I experienced fatigue, which ranged from low to moderate, with no respite. But the onset of the flu tipped the delicate balance I was trying to maintain, and I developed severe fatigue during and afterward. I do not remember what it is like for my body to feel energetic!

I am somewhat familiar with Hashimoto's. Does your fatigue prevent you from working? Is it likely that medication management eventually will help you to return to baseline or at least a more optimal level of functioning? I have found no medications useful for CFIDS, but I have modified my lifestyle so that I can at least achieve some improvements in my quality of life. This illness is easy to predict in some ways--if I even attempt to "overdo" I may spend days or weeks trying to "recover"--and hard to predict in others--in the midst of trying to "do everything right" I can experience a crash, which makes it difficult for me to manage even basic activities or accomplish anything I consider to be meaningful.

One interesting experience I have had relates to others' responses. Many people think I should be so grateful to be alive, with my cancer history, and trust me I am, that I should not be especially concerned with the impact of CFIDS. I choose carefully when I want to have the quality of life discussion with those others!

jenlee

Brenda, I have a history of CFIDS from way back (back when people thought it was the equivalent of crazy).  It has come and gone for years, though the first six months from initial onset (which seemed to start with a major flu-like episode) were the asbolute worst and kept me from working.  Most other times have been more manageable. I did find that after the initial major episode, exercise actually became helpful.  I always wonder if the immune dysfunction played a role in my breast cancer.  Thinking of you & sending positive thoughts for healing!   Jenifer

Brendatrue

Jenifer, Thanks for your response! And thankfully for me, at least my internist was not inclined to think that I was crazy when I was first presenting symptoms. I'm glad that your flare-ups of CFIDS have become more manageable, and I understand why you would question whether CFIDS had a role in the development of your breast cancer. I try to manage daily exercise, even if it is only 15 minutes of stretching, and most days I am able to exercise for about 30 minutes; however, some days it totally wipes me out to exercise and I have to go back to bed for rest just to recover.

I noticed you were doing TAC, and I am wondering how you are managing now. Have you had any CFIDS flare-ups? Or is it hard to tell given how challenging chemo can be? I noticed you are ER+/ PR+. Have you decided to do hormonal therapy following chemo? I'm still taking tamoxifen, and my internist and MO think that my fatigue is probably worsened by that med. If you go the hormonal therapy route, I wish you the best with side effects. And I hope your healing process following chemo and surgery will go well!

Galsal

there's an interesting theory of thought that CFS and FMS are close relatives.  i've FMS, myself.

Brendatrue

I'm hopeful it won't take years and years to uncover more about the mechanisms underlying Chronic Fatigue and Fibromyalgia. I read that there was scandal at the NIH over misuse of funds designated to study CFS and reportedly there are renewed efforts to study causes and treatment options. People suffering fom either or both deserve to have attention and resources given to these illnesses.

MMac

Hi.  I've had FMS for 3-4 years.  I took an early retirement last year because I could no longer deal with the pain and working.  One week before I retired I was diagnosed with breast cancer.  My FMS was so much better after I retired - I was recuperating from surgery and didn't feel like doing much with the strong chemo.  In December I started the Arimidex and I could feel it going to all the muscles and joints where my fibro hurt.  I talked to my radiologist about it and he said I probably didn't hurt so much when I was going through chemo because I was getting a lot of corticosteroids too.  Now, I just deal with the fibro pain and arimidex pain by resting and using a heating pad.  I try to exercise too, but some days I just can't.  Does anyone know what the stats are  for re-occurence if you don't take an AI?

Brendatrue

Hi, MaryTex, I am sorry to hear that you received a diagnosis of breast ca just prior to taking early retirement so that you could take better care of yourself. I know that AI's like arimidex really cause significant side effects for a number of folks; however, I also have heard many stories of women who tried one AI then switched to another and experienced much more tolerable or minimal side effects. Have you talked to your MO about changing the AI? I took arimidex for well over a year then had to have the "quality of life" conversation with my MO, who then switched me to another hormonal but not an AI (evista). One of the things you might want to consider doing is check out an adjuvant therapy tool to get a better picture of how much hormonal therapy might benefit you (given you are ER/PR+, the benefit is likely to be considerable); one of those tools is at www.adjuvantonline.com. There is also a great deal of good information about the benefits/risks of AIs in the research section of this bco website. Also, given that few people post on this topic about CFS & breast ca, you might want to consider creating a topic on the hormonal therapy forum, where more women who are currently taking (or have taken) AI's would be more likely to see your post and offer suggestions. I hope you find the answers you need and the treatment plan that works best for you and that you start to feel better in the process!

MMac

Hi Brenda.  Thank you so much for your reply.  I will definitely check out the adjuvant website you mentioned.  I will talk toI my onc again; he suggested after the first month I could try tamoxifen, but I wanted to stay on the Arim. since it's supposed to help more.   I'll try the hormal therapy forum too.

Mary

MMac

Hi Brenda.  Thank you so much for your reply.  I will definitely check out the adjuvant website you mentioned.  I will talk toI my onc again; he suggested after the first month I could try tamoxifen, but I wanted to stay on the Arim. since it's supposed to help more.   I'll try the hormal therapy forum too.

Mary

Brendatrue

MaryTex--I wish you the best as you sort out which treatment option will work for you. Feel free to PM me if I can help in any way (or return to this topic, which I continue to monitor). By the way, it is often hard for me to exercise as well, so I have a variety of things I do to avoid stressing my body in the same way two days in a row. One of the things I do when I hurt the most is tai chi, which I highly recommend. If all else fails, I will do at least 15 minutes of stretching. And for me, ice therapy works better than heat. I hope you start to feel better. Take good care--

OFFSIDE

Hi Brenda, Yes I have CFIDS, had it for 10 years prior to diagnosis of breast cancer. Breast cancer two primaries, one in each breast Lobular in situ, one undifferentiated and other differentiated. Had to have bilateral mastectomy and was told that cancer was in 14/15 nodes on the undifferentiated side and 4/6 on the other.

Treatment was chemotherapy which made me extremely ill and the drugs used had to be changed due to the severity of the side effects. I was hospitalised many times during chemo. I lost 25kgs in weight. Side effects were many.

Radiotherapy sapped the little energy I had to the point that it was impossible to sit upright as a passenger in the car being driven to and from treatment. Extreme fatigue and weakness .

I now have a non-life. The simplest activities are impossible to sustain for any length of time. I've tried various therapies etc , some have been helpful to a degree, even a very small temporary improvement is significant. Frustration, despondency and loneliness are difficult to deal with at times.

It is now 18 months since I completed treatment. Of course there are other problems such as lack of strength in arms and torso etc.

Brendatrue

Hi, OFFSIDE,

You certainly have experienced quite a struggle, and I am sad for you that it has resulted in a "non-life." None of the interventions that I have tried has been helpful in creating more energy or endurance. What has been most helpful to me, and may not be relevant to your experience, is the idea of an "energy envelope." Although this initially struck me as an overly simplistic idea, it has caused me to be more mindful of my energy state and to try not to do more than I can. Or when I need to do more than I feel like I reasonably can, I will schedule nothing else for that day; for example, if I have to go to MD appointment and lab work, I do very little prior to and afterward. I am fortunate enough to be able to exercise some, and on my very low energy days I may do stretching and very gentle exercise for up to 30 minutes, even if I have to pause and rest over and over. On the days that I feel like walking, I tend to walk rather slow, and I always follow with a rest. For me, there is no such thing as exercise that makes me feel more energetic, like it may for many people. I exercise primarily because it gives me a psychological lift and because I know it will help my body to stay stronger (although I realize that is a controversial issue for people with CFS). I also have learned to be compassionate and nonjudgmental toward myself as I live a life that is not the one that I had planned to live.

Two books that I have read helped me to cope better with my significant change in quality of life: 1) How to Be Sick by Toni Bernhard--described as "A Buddhist Inspired Guide for the Chronically Ill and their Caregivers" and written by a woman who has a law degree and served as a university law professor for years before experiencing a very dramatic change in her life because of CFS. She writes about finding joy in the life you can no longer lead, using compassion to alleviate suffering, living in the present moment, and the struggle to find community in isolation, among other topics. 2) Being Well (Even When You're Sick) by Elana Rosenbaum--described as a book of mindfulness practices for people with cancer and other serious illnesses and written by a psychotherapist and teacher of mindfulness who has dealt with lymphoma (and recurrences)and a stem cell transplant. She writes about befriending the body, accepting change, coping, loss and grief, gratitude, and other topics.

I hope this is helpful information for you and for any others who happen to visit this topic. And, of course, you may feel free to send me a PM if you would like.