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Multiple side effects and now it's all piled up, AGAIN

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

It would take forever to go over all my side effects from a bone marrow transplant I had for NHL 18 years ago but some are heart damage, lung damage, osteoarthritis and fibromyalgia. Now I am getting other weird and scarey symptoms that I have never had before and the list of all the things it could be is just overwhelming and the docs have no idea. I am doing research on my own but the number of specialists I would have to see to follow up is just more than I can take as I have so many already. I also have been told I now have a cyst and node they found on an ovary, the only system that was working alright til then. In Canada our health care system is overcrowding and I cant even get a freakin biopsy without a fight.

Bottomline is that I am overwhelmed, again, but this time its insane. I have symtomes that need to be followed up quickly and nowhere to turn it seems. My GP used to be right on it but she is swamped.

Had to get that out. Anyone out there with 20 years or more out of treatments with a ton of side effects and no answers, or few? How do you cope? Blessings, Bluerose

birdgray
Posts: 8
Joined: Sep 2009

Hello, Im a 22yr survivor of 3A NS Hodgkins, I had total lymph node radiation + liver (18weeks)

You said it all, But as for the fibromyalgia thats just a doctors big word for I dont know whats wrong with you. I Hurt all over but its not fibromyalgia, its what the radiation did to our bodies. I had a cyst on my ovary and fibroids in my uterus, I had a hysterotomy and now feel great.(Except for scare tissue). Osteoarthritis is a big source of pain, mine has effected my spine to the point I hurt so bad I am in tears most days. I want to do so much but even to clean the house is a major project. My most scariest symptom has been getting worse over the last few years is balance. I am 47 and I can't walk a straight line, if I close my eyes I fall over. They tell me I have all the symptoms of a brain tumor but don't have one so it must be the radiation. I have a lump in my arm and everytime I fill it I get scared, they say we will just watch it for now. I think hello do you know that cancer has grown in my body before and this is scary. I have been so overwhelmed with it I started looking for a support group in the area to help my except the fact that no doctor knows what to do at this point. I even called the doctor who treated me 22yrs ago, after talking with the receptionist I was sure I would not hear from him. Not only did he call he wants to help me, I feel like a big weight has been lifted.

You are not alone, I am finding it easier the more I talk about it but dont want to bother family and friends with my problems they have been hurt enough. On the other hand I want the world to know what has happened because of the treatments and want something done about it. I am so thankful for this web site because everyone is going through the same thing and its a comfort to talk to each one.
Thanks for posting
Bird

bluerose's picture
bluerose
Posts: 1089
Joined: Jul 2009

Yup, unfortunately I think many of us long term survivors have experienced alot of the same things and it makes some degree of sense seeing the treatments were harsh that many years ago but obviously successful because we have survived this long but it comes at a cost for many - side effects.

As far as fibromyalgia is concerned there are many opinions on it. Some doctors feel its not a real phenomenon on its own but many now do, more and more actually. It isn't just pain and aches all over in general cause that can be all kinds of things like neuropathies - nerve damage from treatments or arthritis or all kinds of things, it is a certain type of pain in several key and documented spots for complete diagnosis of fibromyalgia. I forget now how many points it is they poke you in to see if you have it, its something like 20 and if you have 17 out of that and answer a few key questions they make the diagnosis or not. I believe there are some other diagnostic tools in examining a patient too that goes into the mix. When the doc presses on those points though those with fibromyalgia hit the ceiling. It's not just a little ache - it's huge. Bursitis is a very painful problem (I have that too of course, why not, lol) and that is an eye bugging out of your head pain and alot of fibromyalgia points are like that. But there are till some docs who think it's a pile of poop but on my end of the pain - not so much. I didnt have that kind of pain before treatment and I believe that part of it - radiation or chemo or a combo of both produced the fibromyalgia and my rheumatologist believes that to be probably the case. It depends who you ask though it seems, even still.

I also have neuropathy mostly in my feet and legs from treatments and am scheduled for a nerve test next month to see where the damage lies.

I have osteoarthritis too and I know that pain alright. I have it in my hips especially and my back (on morphine each day for the pain), in my elbows and hands and knees. There is some on my ankles as well. Other than that no problem. lol.

Interesting about the balance issue. I have actually lost my balance several times in the last year but just thought I took a wrong step but I will have to watch for that and see if it's more of an issue. I had total body radiation and actually got tested at a Memory Clinic here not long ago and the neurologist confirmed chemo brain does exist in patients who had treatments for cancer - radiation/chemo. Some chemo drugs do cross the blood-brain barrier and kind of overall weaken the brain a bit - not real damage he said but just is a weaker foundation that is more susceptible then to things like aging - which a person say who didn't have treatment might handle better. So we are more likely to forget things easier and sooner than a person who had not treatment. Kind of weakens the foundation of the brain a bit. Makes sense to me. It wasnt long ago that doctors didnt validate our issues of chemo brain but now they recognize it which is easier to take than just looking at you like you are bananas and 'blaming' the treatments, if you get my drift. We have come a long way in being understood and validated for sure. This site is great for that too as you mentioned.

I tried to call the oncologist who treated me 20 years ago asking his secretary to tell him it was me and hello yes I am still alive, lol, and asking for his help in getting action on this new cyst thing and she said she would give him the message and I never heard from him. Very disappointing and made me feel so abandoned. You are lucky that yours is so helpful, big relief for sure.

When you were saying that you want the world to know about what the treatments can do its interesting because that is one of my big issues. Cancer survival has been touted as a courageous thing and a positive thing and it is in many ways BUT there is another side to cancer that gets lost and its so important to the survivor, I think, to be able to discuss that side as well and that is the late effects side. When patients used to talk about it before they were looked at as being ungreatful that because the treatments cured or beat back the cancer and that is a gift so it was like - so why are you complaining? So many of us just felt ungreatful and said nothing but now things have changed because we are speaking out. I am not saying that anyone did anything wrong in all the side effects we experience - the medical profession I mean - just saying that yes it does happen and it affects our lives and we need to discuss it. Lance Armstrong did us proud by opening the first ever survivor clinic at Dana Farber for adult onset cancer survivors. Before that there were only survivor clinics for those diagnosed as children. Their side effects as they grew, from the treatments, were well known and documented as they were still growing when hit by radiation and chemos so had obvious side effects. I look at them as our trail blazers, alerting the medical profession to after effects. Today patients are living so much longer due to medical advances in treatments and so we are now into long term survivors who are experiencing a whole slew of side effects not seen before because long ago the patients just didn't survive as long as many do now. With our systems weakened and damaged years back time produces greater side effects in many cases. The good news and the bad news - we lived longer but at a cost. There is a price to pay for the cure but if you value life and it's not too painful it's worth it.

Anywho I am going to stop typing now because my wrists are killing me for typing so much. lol. We need to be able to get this out though and this site helps us to share our situations and therefore feel more validated in numbers and situations.

Thanks for sharing. Blessings, Bluerose

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