Jan 15, 2009 - 6:54 am
Something that I've been interested in for a long time is connecting with other survivors and finding out what they have experienced as Late Effects from cancer treatment. Late effects are the side effects of cancer treatment after it is over. I have a variety of late effects and I first learned that was a name for all those collective symptoms when I met a nurse practitioner who studies Late Effects of adult survivors--and that was 10 years ago. There is still not a lot of documentation on this subject because in terms of medical history, cancer survivors are a relatively new phenomenon.
I'll break the ice by talking about what I've experienced. My diagnosis was ALL (Acute Lymphoblastic Leukemia). I was treated with oral medications, IV medications, spinal tap/lumbar puncture procedures, and 10 sessions of low-dose radiation to my head. I was initially "cured" of the cancer after 2 weeks of treatment, and the entire length of treatment was just under 2.5 years.
The major late effects I have been dealing with are chronic fatigue, chronic lower back pain, depression, and a high level of stress. For me, those have been the hardest to treat. I also have things related to these: nausea, sensitive stomach (and it used to be hard as a rock), acid reflux, extreme muscle tension in my neck and shoulders, stress headaches, inability to concentrate, and also, bladder issues (before treatment, I could hold it up to 4-6 hours eating and drinking normally--now, I can only do an hour or 2 if I don't drink or eat anything). During my treatment, I made friends with a girl who was close to my age and had the same diagnosis. She also experienced gallstones, and I am so thankful I didn't get those. One of the psychologists I worked with during and after treatment said a lot of leukemia patients had chronic fatigue issues, but since doing some research, I think this is common to anyone who's been on chemotherapy and/or had radiation sessions. I know there are other late effects too that I have not had.
My treatment for late effects has consisted of many things. I've tried physical therapy, counseling, medications for depression and anxiety, changed my eating habits, tried to be more physically active. I've had tests for thyroid problems, lung capacity tests, echocardiogram, blood tests, and luckily everything's been normal--but the fatigue persists. And of course they're all related--depression causes anxiety and fatigue; fatigue leads to anxiety and depression; anxiety mounts over depression and fatigue. Depression is also linked to physical pain, and physical pain can worsen depression. So, here we have a few perpetual cycles. I believe that the depression is the main contributor in my case, but I have yet to find a treatment that works for me. I've been on several medications, I've done counseling over the years, and yet, I'm still suffering. I don't know exactly if the depression started as post-traumatic that tied in with the chronic physical pain and emotional stress, or if something else triggered it. It's hard to remember exact details when treatment ended so many years ago.
I'd really like to know what others have experienced and what they have done to deal with them. When I'm the only one I know dealing with so much on a daily basis and trying to lead a normal life, I can get quite overwhelmed. I know I'm not the only one out there, and I hope those reading this have had some success in treating their late effects. I've had temporary success with physical therapy, but always feel like I need more once the sessions have ended. I recently moved and I need to find a new psychologist/therapist to go to. I know that helps me a lot, but I feel like there is something else that I could be doing that I don't know about yet. I'm also working on better nutrition. My mother is a Registered Dietitian, so I grew up with fairly good nutritional habits, but I'm not much of a cook and I have a student's budget. I know I need to increase the whole grains and vegetables and remember to take my multivitamin. :)