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Late Effects of Cancer Treatment

Posts: 9
Joined: Jan 2009

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. :)

btcat's picture
Posts: 51
Joined: Mar 2005

I agree with you that cancer survivors are relatively new phenomenon. Even more so are we childhood ca survivors. We are kind of an unkown element of society. A book that I have that is a "guide" for childhood survivors talks about up to like 10 yrs. Are we just suposed to keel over at that point? Nothing out there for looong tern survivors.

I am at near 26 yrs past dx. of medulablastoma (brain tumor). I had an operation, high intensity radiation on the back of my head, as well as high intensity experimental oral and IV chemotherapy. I had a begign tumor on the front right top of my brain removed in Sep.04 my neurosurgeon was quite sure caused by the radiation.

I have a lot of the late effects that you mention. The biggest ones are that I tire very easily, have back problems(will explain further), depression issues and stress/anxiety problems and get overwhelmed quite esily, slow cognitive processing and balance probs. I have a sensitive stomach, minor reflux probs(which used to be worse, but have lessened thanks to a ginger root supplement), major concentration and memory problems, and my nervous system is messed up -twitches,pains etc. I also have a condition (brain damage)that causes my eyes to see on 2 slightly different levels, so I have to have prisms in my lenses. My nearsightedness was exaggerated by the whole ordeal, I have bad depth perception which I believe was caused by or exaggerated by the cancer ordeal. I also have delayed physical reaction time. I could prob think of other things, but that would make this listing too long.

As for my back, I'm not sure how much of my problem was caused by the cancer and its' treatments. Where the normal human spine has 3 curves, mine has only 2. My spine is quite visible in the upper back and virtually dissappeares in the lower back with my tailbone looking kind of like a button. I've been told by a chiropractor that this likely started w birthing stress, but i believe was possibly exaggerated by the spinal taps and I know was aggravated by my large frontal growth caused by hormones I was given to "restart" my physiclal development and appetite.

Counseling has helped some with my psyco/emotional issues. Meds don't seem to so much there. Physical therapy and the recommended exercises help with the pain. Basic physical activity,sumlight and paricularly Summer help a lot with mood.

I hope my input helps you some.

God Bless,


Posts: 1
Joined: Feb 2009

Dear Christy
I am the mother of a 14yr old boy, one year into remission from ALL. Since november 08 he started feeling pain on his feet and xrays showed overuse, same with MRI. All autoimune and oncological tests showed nothing, just inflammation on his feet. He is on a wheel chair, getting physical therapy and still in pain. He is depressed and under treatment for it, both counseling and medication. That has showed a little improvement, but after reading both your and Mysterial posts, I am wondering if this fatigue thing is real. And further more, How can I help him.

Posts: 9
Joined: Jan 2009

Fatigue is definitely a real side effect or late effect of treatment, and it can vary in degree. Some of its causes can be chemotherapy, radiation therapy, and even depression. I don't know much about adolescents taking medication for depression, but counseling can help (if he feels he's benefitting from the counseling) and physical therapy might help with the feet--your health professionals would know more than I would. From my own experiences and also what I have researched about fatigue and depression, exercise actually helps, even though you don't necessarily feel like exercising. It can be something as simple as taking a walk, swimming, or a light outdoor activity such as playing frisbee or a sport your son might enjoy. Another thing that helps is involvement in activities--especially important at that age. When I was his age, I was in the school band and my enjoyment of the music and the band activities helped to distract me from physical pain or fatigue. It also helped to build my self-confidence and I made some new friends. Is there something that he's interested in doing, such as playing a sport or joining a school club? I think the best way to help him is to be supportive of what he wants to do, and of course, keep the doctors updated.

Posts: 1
Joined: Sep 2009

My daughter was diagnosed with ALL when she was six. She is now 11 yrs old and suffers with chronic pain since diagnosed. Doctors say that the chemotherapy affected her nerves in her body. They say it is "nerve hypersensitivity". She is constently in pain and is on many pain meds. As a mother, it is extremely difficult to see your child suffer like that. Just looking for someone who understands...

Posts: 9
Joined: Jan 2009

Hi Christy,

Thank you so much for replying! It's nice to talk to someone who's also been there and experiences these late effects (not that I wish them on anybody, of course!) I still run into health professionals who do not know about late effects--one seemed to think that they did not exist! and that all of my physical conditions manifested from depression. Right…. and I imagined the giant needles going into my spine and the countless rounds of chemotherapy and pills I had to take for 2 and a half years.

I'm amazed at how similar some of our late effects are, even though our diagnoses were very different. The biggest issue I struggle with is depression, and I'm done counseling here and there--I've fallen off the wagon a few times--but now I'm tackling it again, this time with more success, I hope. We both have the fatigue problems (which I believe can be caused by both chemo and radiation.) I think the sensitive stomach might also have to do with the chemo--mine used to be worse and I had a borderline ulcer closer to when I completed treatment. I finally found the book I mentioned in my original post, and it gives a large overview of late effects that many survivors have experienced (I hope no one has all of them!) : "Childhood Cancer Survivors" by Nancy Keene, Wendy Hobbie, and Kathy Ruccione. It's geared towards childhood survivors but really, the late effect information applies to any survivor, regardless of diagnosis age. I know there are more of us out there--it's just a matter of connecting with them and finding out how they handle their late effects.

Regarding the lower back pain, I found some answers and some relief in the last round of physical therapy I had. Every now and then, my back pain flares up (I'm not sure what causes the flare-ups) and I get horrible back spasms that usually confine me to the house or to bed. About a year ago, I had another severe episode and was sent to physical therapy again. I've seen numerous physical therapists and even a back specialist over the years, but had never gotten any answers as to why this is happening and how to prevent it from recurring. Finally, this most recent therapist realized I have scar tissue in my spine (from all those fun spinal-tap procedures), which is preventing the area from healing and returning back to normal. I know that physical therapy is an on-going process, and because the insurance companies allow limited sessions, my therapy always ends sooner than I would like it to. I do feel better when I stretch a little and get some light exercise.

Thanks again for replying. :)


Posts: 3
Joined: Mar 2009

My situation was pretty similar to yours, except it took almost three years to get into remission. I did some research in grad school and found that the study I was a part of was called the New York study, and offered different treatment options, the one for ALL patients involved oral and IV meds, and cranial radiation.
Supposedly as a result of the combo, I was slightly stunted in growth, but I had also experienced early puberty. Later in life I had my gal bladder removed because of stones, I suffered a "nervous" stomach most of my life, learning at the age of 22 that I had all along been allergic to corn syrup, which any American knows it is in every darn thing. In my late twenties I have had kidney stones twice, which means I have a hydration problem, and unrelated to the cancer, I was born with a potentially fatal heart defect that having cancer saved my life because it was found by accident.
Like many people all my medical things are both unrelated and possibly connected.
I hope this helps you.

BeccaDrewAPicture's picture
Posts: 3
Joined: Apr 2009

I had ALL as well, when I was only one or two years old. I'm 17 currently and since around 3rd grade I've had terrible migraines. Doctors told me the cause was stress, totally canceling out the fact that I went through chemotherapy. Sadly, everyone my whole life has dismissed my pain as me making it up in my brain for attention, even my mother! How naive can someone be? I went through cancer, how can you expect me NOT to be in pain and have a crap ton of problems? Recently, the back pains began, couldn't tell you exactly when, but probably 3.5 years ago. I've always had severe depression problems and fatigue.. since before I can remember most likely. I've always had shortness of breath and haven't been able to run, save for about 5 feet. My stomach problems are endless.. bowel problems, acid reflux, etc etc. All of my problems confused me, I was wondering why I was feeling the way I have been for years, until about a year and a half ago I started dating my boyfriend. His mother is a nurse and told me that there are effects from chemo and they most likely will last my whole life. I was relieved in a way, I guess, to finally put the pieces together. I should have known that it was the result of surviving cancer, but I guess because of being so young and only remembering undergoing spinal taps, it's only natural that I didn't think of it. I'm glad to know that you guys can relate to me and that I'm not the only one. It's kind of a relief to know that I'm not just making it up. I mean, I have a best friend who went through it with me, same cancer treatments and everything, but I don't live near her anymore, we barely talk.

Has anyone else been struggling with weight issues? My best friend and I have been since reaching puberty and I'd like to know if it was maybe the type of treatments we went through or chemo itself, or something else entirely!

Thank you for your time :]

Survivor86's picture
Posts: 18
Joined: Apr 2009

Hi Rebecca,

I struggle with many health issues, alot of the same problems your having and more. It has finally been proven that we are not CRAZY! I struggle with loosing weight, I was diagnose with HD 23 years ago, at the age of 11 and have had weight problems most of my life, I had a doctor years ago tell me I was anorexic, it made me very angry, I new I was not anorexic. I've had thyroid problems from the radiation and cheom I received as a child.

Do you have problems loosing or gaining weight?

Its nice to know I'm not alone!

Posts: 45
Joined: Apr 2003

Hi Mysterial I'm 30 years old and a survivor of Neuroblastoma. I was diganosed at around 13months of age. I have been told over and over again that I was treated in the dark ages of medicine-Cancer treatments. Although I can't remember my treatments I do have late effects from them. I recieved chemo and radiation nd I had surgery as well. As a result of an experimental drug I had heart failure at the same time my cancer was cured. At the same time they (my doctors) were throwing the book at my cancer including the experiemental drug somehow my cancer was put into remission. However the experimental drug caused my heart to grow weak. As of today as a result I have been living with Cardiomyopathy. In addition to this side affect from radition and other chemo treatments I have learning disabilites in math and science, low growth hormone, a curved spine, and baby fine hair. I also have extra tissue at the back of my neck and under my chin. When I reached my middle 20's I noticed yet another issue as well- my hair began falling out and getting thinner and while I still have hair it still falls out. I have dealt with many social issues for pretty much all my life and it has taken years for me to find and develop friendships with the trustworthy wonderful people that I know now. I do not have as much energy or stamina as others and I have very little upperbody strength. Also a few years ago a tumor was found on my lower spine that caused me so much pain in my back and legs. It was horrible luckily it was not cancer and was removed but my recovery time was very long and difficult and unfortunetly there were some complications. I am still here today and I am forever thankful for it and I feel proud to be a survivor. While I feel a lot has been taken away from me I feel so much has been given back in other ways. I have a different outlook on life and on how I want to live. I feel empowered to help others to give support and to advocate for those dealing with cancer, those who have overcome it, and those who know people who have it. I feel lucky to be alive, I feel I have so much to live for and so much to give. I belong to a late effects clinic and it has helped so much because I have felt alone in my struggles for so long. Connecting and sharing experiences with others has been wonderful and any support or guidance I can give please let me know. Having resources and guidance has helped so much and I have been to survior conferences as well and I would be happy to talk about them to anyone interested. A speaker named Scott Burton told me once that "There is life in the fight.". and I think he is right. Stay strong everyone, embrace your postive experiences whenever you find them. Also two more good quotes-"Keep on keeping on" and "Just keep swimming"- E.D.

Posts: 1
Joined: May 2009

Hi! It is so great to find all of you! I am actually the mom of a stage IV Neuroblastoma survivor. My daughter was diagnosed at 14 months and is now 11 years old. She received surgery to remove her adrenal gland, chemo, radiation and an autologous bone marrow transplant. She is doing really well but has some side effects we have found or wondered if things are related to treatment. I am always wondering what else is around the corner. She is on growth hormone and is the size of a 2nd grader though she is in 6th grade. She has always had a hard time with memory retention on little things like at bed time when we discuss what the plan is for tomorrow and then remembering what I told her. Math has started becoming more difficult for her to grasp this year but I don't know if that is related or not. Blood work this week shows phos levels are low and so I wonder if it is just a supplement that is needed due to treatment and her body not making some of the chemicals it needs to or if her liver or something has been damaged and there is a larger issue brewing. I bet that fear is always there for all of you too. I would like to know if any of you were on growth hormone. Do you feel it helped? What other side effects have you noticed? It is really good to hear your stories and how far you are out from treatment. Take care! Thank you for sharing your stories!

Posts: 2
Joined: May 2009

First time here so I'm not sure if I'm replying right lol

But I've always wondered if there was long term side effects. I am now 29 years old. When I was 6 years old I was diagnosed with osteosarcoma, which spread to my lungs. I had chemo for two years and was "cured". It's been gone ever since.

I have had fatigue, it seems like my whole life. I've also had nausea, it seems like my whole life. When you go through chemo you feel super sick. So when chemo is over you feel better, but I'm not sure if I ever returned back to 'normal'. I have major fatigue, I'm always tired, always. I'm pretty much always nauseous as well. A day doesn't go by that I'm not sick and tired literally. Since it's been happening for years I've learned to live with it but it's so hard. My family sees what I go through and they just know something is wrong with me. I've had a couple doctors and they've had my blood done, cat scans and a couple other tests and everything comes back good, which is good news but then it isn't. Because that means there's no cure for how I feel. :( It doesn't matter how much sleep or exercise I get, it doesn't matter what I eat (although I eat healthily). Everyone I know asks me what's wrong lol because I always look exhausted. My last doctor prescribed me some medications that chemo patients take to help their nausea and it does help me a bit but leaves me even more exhausted. I feel like I'm getting worse. :(

I too have depression as well. I'm not sure if these symptoms are from the chemo but I really wish there could be more research on it.

BrittaA's picture
Posts: 19
Joined: May 2009

Hi Mysterial – I know I definitely suffered side effects after my treatments ended, and my father (who passed away from colon cancer in 2007) suffered terribly from side effects even while not doing chemotherapy and radiation. I’ve started a blog, Cinco Vidas (link), that deals with side effects of cancer treatments and some remedies for them. For example, many patients suffer hand-foot syndrome well after treatment ends, but few doctors can recommend much to relieve pain. I did a recent post on this subject that you might find helpful – http://blog.cincovidas.com/dealing-with-side-effects-like-hand-and-foot-syndrome-these-natural-remedies-may-help. As well, many survivors suffer terribly from joint pain, and I did a recent post on alleviating this pain – http://blog.cincovidas.com/side-effect-joint-pain%E2%80%94try-these-natural-remedies-to-ease-movement. I hope I can be a resource for you and other members of this community. Love, strength and survival, Britta

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