Monday Night Cancer Club is a Daily Kos group focused on dealing with cancer, primarily for cancer survivors and caregivers, though clinicians, researchers, and others with a special interest are also welcome. Volunteer diarists post Monday evenings between 8-9 PM ET on topics related to living with cancer, which is very broadly defined to include physical, spiritual, emotional and cognitive aspects. Mindful of the controversies endemic to cancer prevention and treatment, we ask that both diarists and commenters keep an open mind regarding strategies for surviving cancer, whether based in traditional, Eastern, Western, allopathic or other medical practices. This is a club no one wants to join, in truth, and compassion will help us make it through the challenge together.
I had a nice, comparatively innocuous theme in mind for tonight’s diary—and then I read something that has made me apopleptic.
On one of the major discussion boards I visit regularly, in a section devoted to uterine cancer, there has always been a broad spectrum of information provided from the posters. In addition to the personal updates, which are often of general interest since they provide at least anecdotal information about treatment strategies, people also post about new or interesting research or resources.
What got me going tonight was reading a post (unsourced so far, though I am working on tracking it down) from someone who is generally very reliable about some of the “unintended consequences” of chemotherapy. Not the ordinary side-effects I’ve already experienced, like alopecia and nausea, but more insidious ones, far more dangerous in the long run.
According to what I just read this evening, there is a growing body of evidence that several of the front-line chemotherapies for my version of cancer (endometrial adenocarcinoma) also ENCOURAGE METASTASIS. Taxol (which I haven’t had), doxorubicin, and cisplatin (the latter two of which I have had) all apparently contribute to the excess production of Interleukin-8, which is key to the process of angiogenesis that supports the growth of new cancer sites.
In my reading of the medical literature, I have come across several treatments that seem to have a good initial “response rate,” but in the end do not produce an increase in overall survival times. This circumstance with the Taxol and other drugs listed above may be one reason why, at least in part, some people can experience a remission while still not living any longer than statistics show they would have lived without the treatment.
One of the problems that people experience when they have to go through subsequent treatments, if the first line of attack was not successful, is that the cancer cells that remain typically appear to have adapted to the initial treatment—have gotten stronger, in fact, as the weaker cancer cells were vanquished. The idea that somehow the anti-neoplastic drugs themselves may directly CONTRIBUTE to conditions that foster growth…absolutely floors me.
I’m not merely shocked, I’m angry. I feel betrayed. These two chemotherapies I suffered through for nearly six months did not apparently work for me at all. And now, it’s possible that they may have actively harmed me as well.
I have tried SO HARD to get up to speed about my particular version of cancer. I’ve read as many review articles and meta-analyses as I can find. I’ve complied with every single instruction of my oncologist. I’ve changed my diet (my original idea for tonight’s diary). I’ve changed my exercise habits. I do T’ai Chi, Yoga and Qi Gong weekly. I get outside every day. I meditate. I take many different supplements. I'm getting acupuncture to help my neuropathy (and for general immune support.) I'm seeing an Ayurvedic healer for dietary support and general guidance. And now, I find, the damn chemos might be contributing to the spread of the disease in my body--!
This is not a neat and tidy diary. I’m sorry if this disappoints anyone. But I am so tired of feeling helpless, like a damn butterfly on a pin.
I may feel better after reading YOUR comments. Or I may not--! We have a lot to be angry about, I think, since there is so little clarity for us in dealing with this disease.
First question for general discussion: If there is anyone out there who can contribute informed comments on this particular issue (regarding the encouragement of metastasis by certain anti-neoplastic agents), I would be very grateful to read what you have to say.
Second question: What have you experienced in your dealings with cancer that has taken you aback? What has surprised you (and not in a good way)?
Before I open the floor, however, I have two requests. Well, one request twice. On Monday, 11/14, I will be at a raw food detox center and therefore unavailable to post at the usual time. On the following Monday, 11/21, I will be returning home from my step-son’s wedding and therefore unavailable to post. Since there’s some steady interest in this diary series, I’d really appreciate someone else taking over those spots. Please either indicate your interest in the comments below, or send me a Kos message.
Update: The words and passages in italic are recent edits, in the spirit of making the diary thread more inclusive. Thanks!
PS--And then I remembered to add the series intro in the blockquote at the top....