After Chemo and Radiation

• By PC
• Posted August 30, 2008 at 8:07 pm

Hi Roger,

Thanks for the info last week. My MT will be contacting your PT so see what she is missing. Also I sent your email on to Dana Farber Cancer Instute to my RN in the Long Term Survisor Clinic. I think Richard would like to talk with you if this is possible,
Thanks Roger.

Paul

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• By Kim118
• Posted September 20, 2008 at 2:35 pm

So glad to have found your letter. I,too, suffer from many health problems 13 years after chemo and radiation. Seems like as the years pass, the problems grow larger. Is there some kind of a study about the long term effects of chemo on your general health? Does anyone have an address or know who to contact about this. My doctors know NOTHING and tend to attribute alot of my problems as in my head. I actually have had major problems getting a doc to even accept me as a patient. Please help!!! Kim

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• By joyrmttx
• Posted September 21, 2008 at 11:46 am

It's unsettling to know that I may be looking to problems years down the road from the chemo treatments. I had my last infusion on 12/28/07 and was declared NED 2/08 and have been suffering with neuropathy and joint pain since about February. They have given me some meds but they have not totally helped. The docs just tell me to wait and see.

It's great to see the advances in medicine with chemo helping patients to get cured from their diseases but the long term effects I don't think are being addressed. We are living longer but suffering with a host of problems left behind due to our treatments. I read an article not too long ago that MD Anderson and a pharmaceutical company have teamed up to do a study on the after effects of chemo in adults. The oncologist has told me that in the past the studies were only being done on children surviving from cancer as they grew into adulthood. The oncologist as well as we survivors are looking forward to these studies for help.

I'm hoping with time I do get better but it sure is putting a damper on my livelyhood. I'm a massage therapist and I do miss my work and clients. With being single and a daughter in college this is a bit tough but with the Grace of God I'm making it. I am doing a few alternative things and with diet and excercise am trying to get my life back one day at a time. I hope the best for you Kim and the rest of us dealing with the after effects. 13 years in remission is awesome and you are an inspiration to me.
Blessings to you,
Joy

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• By 2Xcharm
• Posted September 22, 2008 at 11:41 am

I guess this whole thing is a little of a catch 22. I didn't mention much about the radiation. One of the more ironic things is I am getting skin Cancer in the radiation area. They were able to get it all but I know have a 4" scar on the left side of my face. The Dr did an excellent job, you can't hardly see it. During radiation they were keeping close track of my teeth, it all went well. Now I am getting cavities on the side of my teeth. We caught these early so it was not to bad. One thing that does irritate me to no end is my taste buds. They only work part time. You can almost taste the meal you are about to have and then it tastes like cardboard. Very seldom does anything taste like it should. I also have a lack of saliva in my mouth, it is constantly dry. Most of these things you just kind of learn to live with. Not everybody has the same problems afterwards. I do have days with my arms and hands that seem pretty decent and then they go back into quite a bit of pain. Probably shouldn't complain too much, I have a lot more mobility than I have had. It is amazing how much all of these things start interfering with your life. The frustration factor really can get you down. I try to stay on the up side but it does take a nasty turn to the down side now and then. I can tell when it starts in but at times it is really hard to keep a handle on it. There are quite a few days that my grip on things seems to start sliding. The loved ones that are closest are the ones who wind up taken the brunt of the bad mood. Wished there was a way to minimize this. My Dr helps a lot, but even medication can only do so much. I am working with a Natureopathic Clinic hoping that this help as well. Just have to keep searching for answers. Seems kind of funny; after finishing the Cancer treatment and having it declared in check, I thought the battle was over. I didn't realize that it was actually the beginning of another challenge. Thanks to all with messages of hope.

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• By TammyD
• Posted September 29, 2008 at 8:46 am

Okay, now I need some wisdom from those who've been there. For the past several months I have been having a numbing feeling from my shoulder down to my fingers in my left arm. It stays with me pretty much all of the time. I thought it might be from resting my arm on the table to much and have been trying to keep my arm hanging down thinking it was just a lack of blood flowing there. It doesn't seem to help much. I also have been having a problem with both legs, I have to keep them both straight or they get this weird feeling to them and seem to fall asleep. My feet have been cramping up all the time too. Is this some of the symptoms that you are talking about???? Could this be caused from the chemo/radiation that I had 10 yrs. ago???

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• By 2Xcharm
• Posted September 30, 2008 at 4:08 pm

It sounds like what I have experienced. Most Dr's seem to think that the numbing and tingling should have happened during treatment. I have found that it probably starts then and continues on at varying rates depending on the survivor. My PT explained that a damaged or weak area tends start the problem. The lymphs are to carry out the garbage, but for some reason they will leave it in a vulnerable area. From that point it just like a big road block, everything starts to back up. The circulation is cut off as well the nerves and muscles start to harden. Kind of a bizarre set of events. For me it has been a combination of things to get my arms and hands working again. We have done a lot of deep tissue and nerve massage, hot and cold packs, electrical stem and exercise the effected areas. I have been at this for over 2 months and I think we may have reached a point that this is as good as it gets. Movement is much better and the pain level is down, I am happy with this but it is not a 100%, it is probably 75% and it is wonderful. It has given me back part of my life. A shoulder surgery, 2 back operations and inoperable herniated disc add to the discomfort. One of the biggest things is finding someone who will believe that you are in pain and they are willing to try to help. So many just try to throw some meds at it and call it good. My PT is a definite HANDS on type, and I believe that it has made the difference. Most will try to have you exercise and call it good. I don't think I have ever had any one hold, move, twist and bend my hands and arms so much before. He had something he was feeling for and found it. Hopefully something along these lines will give you some relief. I will keep you in my prayers. Roger

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• By TammyD
• Posted September 30, 2008 at 5:38 pm

Ah crap, I just figured this stuff came with age. Guess I'd better keep an eye on it then. Have you ever checked out acupuncture for any of your problems???

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• By PC
• Posted October 1, 2008 at 8:12 am

Tammy,

Acupunture has helped me with some of the numbness and burning in my right arm. The AVN is the hips it has not helped. I been dealing with all the side effects for 31 years now as it all started in 1977 with radiation which in the last four years I am losing strenght and movement on my right side. The chemo 's in 82 and 06 have left other problems.

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• By Cinders
• Posted October 29, 2008 at 4:50 pm

I survived leukemia via a bone marrow transplant and heavy chemotherapy in 1986 - 22 years ago. Since then i have suffered with depression, anxiety, memory and concentration loss. 5 years ago I started suffering with total left side numbness, tingly burning sensations ...and like you all these years I have been told "it's all in your head" - a conversion disorder - even though my brain MRI showed leisons (white spots). I have been on numerous anti-depressants that only put me farther into a fog and therapists ... well they are trained to think it's from something in your childhood - so no help there.
I was put on meds to help the anxiety and heart palipitations - been on it for 6 years. Now it is discovered I have chemo scars on my heart causing the fast heart beat and palipitations. Surprize.

I just have to ask why ??? why didn't anyone listen to me when I said something just not right inside me, why didn't they listen to what I felt instead of just putting me on meds and send me to shrinks, other doctors to try and make my symptoms just go away?

It's no wonder I am so severly depressed and have lost confidence in myself, it's not easy to be told it's all in your head when you KNOW it's not!
I should be enjoying my second chance at life - not questioning my thinking or telling myself it's all just in my head as my doctors say.
ALL people who receive Chemo should be told what "may" happen, so they are aware and can be prepared and not made to feel like they are going crazy and their symptoms are not real...
I am angry I wasn't told and wasn't taken seriously - if I had been I wouldn't have been trialed on physco meds and sent from doctor to doctor to doctor ...and thinking I'm going nuts.

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