Following long term survivors - why don't they?

bluerose said:

Tanks Joe
Yup, it takes time. They are learning from long term survivors though because some of the treatments I had years ago they don't even do anymore. For instance total body rads, and if they do do it today - it's not as often as before, that's for sure. Too much damage.

Bone marrow/stem cell trnnsplants when I was treated involved a 2 month stay in isolation, today I hear some are day treatments. YIKES. Yup, they are learning. I just really feel that more studies should be done on us long term survivors but I think the message is getting out anywho through our GP's who get to deal with all of our symptoms on a regular basis. We are showing up in big numbers now so they are taking more notice.

Thanks for your input Joester.

Blessings,

Bluerose

bluerose said:

Oh Jan, all too familiar ...
I have many of your issues with long term effects. I think I mentioed earlier I am a 23 year cancer survivor of non hodgkins lymphoma but doesn't matter what types we have, many of us have similar issues from certain treatments.

There is a price to pay for longevity with many treatments for sure. One thing you said makes me so angry - not what you said but what the retort is from doctors. You mentioned that they said 'at least you don't have cancer' after you told them about your side effects. So what - you are supposed to feel guilty for complaining? I HATE THAT RESPONSE. Of course we are glad we lived and haven't had a recurrance but our side effects issues are valid and need addressing.

I remember when I started to mention my side effects to my transplant surgeon years ago. He listened and then asked me if I had a shrink. I got so mad, broke out in tears and called him something non Christian, lol, and walked out. It was clear to me then it wasn't in my head and if you think you are invalidated now, you should have seen treatment 23 years ago. Almost no support. Not blaming anyone, they didn't know, but still it was hard on the patients I cant tell you - they thought it was all in our head.

Nowadays many of us have survived and they have heard the same symptoms from us over and over and realized, oh oh here come a whole new group of patients - long term survivors and we cured them now what? I feel like an alien body because they just weren't sure what to do with us, we were so altered. Now of course the trend seems to be to minimize treatment sites using localized chemo and rads and the least possible, heck when I was treated having a CT scan was looked at as totally benign, now they realize there is more radiation coming from them than once thought. Do you know how many CTs I have had in 23 years? Don't ask.

So what I am saying is that the medical profession is learning but in the process all who have been treated years back and even now deal with sometimes, eventually, after effects that can last many years. Fatigue is a big one too.

Are you aware of Late Effects clinics in the U.S.? Many deal with late effects for those who were treated as children and have grown up with effects from treatments but there is one I know of, maybe more now, that deals with late effects from treatments for those treated as adults. It's called the Perini (sp) clinic at The Lance Armstrong Clinic at Dana Farber in Boston. If you are interested call them and ask to speak to a nurse practioner or information officer who might be able to guide you with research on your particular possible late effects from cancer treatments. They were quite helpful to me when I asked for info.

I live in Canada and we have no late effects clinics yet, all is handled through oncology but it's still a young field. Validation for cancer survivors is key in their healing I believe and knowing that doctors are up on the latest in side effects for survivors is very important.

I feel your pain when trying to get definite answers on side effects. Unfortunatley wer are often told that the medical issue we are dealing with can also be caused by aging etc. like arthritis but it's also common for thosr radiated to undergo alot of early arthritis. Heck that was one of the only side effects I remember them telling me about 20 years ago, they knew that back then, that it was possible. It happened to me, low back arthritis that has me using a wheelchair sometimes but even now they won't say that was the DEFINITE CAUSE of my arthritis, could be other things too. Hello? lol. I know it's possible but looking at my history, highly unlikely it's anything other than the rads I received that did this with the arthritis.

Don't get me started on high deductibles too. lol. I go back and forth wanting to cancel my health plan because it's getting so high I don't know if I can afford it anymore. But if I do then I will never get another health plan again because of pre-existing conditions. I really think that there should be some compensation in lower plan costs for those cancer survivors who were treated years back or for that matter treated ever and experiencing after effects. Many cancer drugs and rad protocols are harsh and of course they damage the body so of course we can expect side effects but geez how the heck can you afford them as they accummulate after awhile? Oh I know the canundrum some survivors find themselves in alright with all of this. I sure do.

Oh by the way YOU CAN COMPLAIN, don't feel bad about that, it's rough and it's not complaining it's airing your emotions that free you and help you heal. This site understands discussing side effects, you can feel validated here.

Wish I had some easy ways out of all of this for you, and me. Keep posting, keep being honest and keep fighting.

All the best,

Bluerose

bluerose said:

Thanks
Negativity doesn't get anyone anywhere except further down but it is important to be able to express your down times when you have them and this board allows that and all understand here and that's important I feel. No one should feel bad about having down times, it's natural in all of this.

Ya the Perini clinic deals with adult cancer patients diagnosed as adults, one of the few clinics that deal with an adult population of cancer patients. As time goes on and there is a whole new population of cancer survivors who were treated as adults and have survived, lots of us now even, you will probably see more clinics like that. Of course the late effects clinics that are for adults treated as children in past years has alot of different side effects as the survivors were still growing when they were hit with treatments. They are very helpful at both the Lance ARmstrong and Perini clinics as I said before.

Glad to hear you are taking control of your health and sounds like you have doctors who are very open to listening and really hearing what you have experienced. Very important as you well know.

Take good care.

Blessings,

Bluerose

bluerose said:

Jazzy
I don't know if I mentioned this before but for me I suspected fibromyalgia because of all the nerve pain (I thought it was nerve pain and still do). They hemmed and hawed and stayed on the fence about the diagnosis and then finally only 3 years ago after dealing with the tingling and cold and numbness of my feet esp. finally a rheumatologist diagnosed me with fibromyalgia. DUH. If you haven't been checked for that ask for a fibromyalgia test. Also you can find out for sure about nerve damage with a nerve conduction test. I am chicken to have that one because I have a pacemaker from chemo damage and am worried the test will interfere with it. My cardiologist said there is a low likelyhood but I am always in the 'low likelyhood' group since transplant.

Anywho just thought I would throw some ideas at you for you to think about. Hopefully you didn't have the kind of treatments that would produce these kinds of side effects.
I have chemobrain big time so I hope I am not repeating myself here or forget some of what you told me. Just disregard stuff that isn't pertinant. lol.

Take care.


Bluerose

jazzy1 said:

Joe & Bluerose
This is a fascinating subject to be chatting about today. I'm NED for 1-1/2 yrs and had chemo and 33 rounds of pelvic external radiation. I've approached both my docs about my lower back pain and the one tells me with a smile, "at least you don't have cancer". One suggests to see my PCP and other to start on pain meds and give it another year. Push it off onto some other doc, but you know what, which doc do they suggest we go to and actually get guidance???? Our healthcare system is such that I could probably hit 4 different docs and still have the pain in my back and going down my one leg....gee! So what's a person to do?

Met a nice oncology RN at my last chiropractor appt and she told me about her latest training sessions. They are just now informing them about all the long-term affects cancer patients are going to see from our treatments. Mentioned side affects will be cumulative and can last 20-30 yrs and beyond. Wow...such a shock as haven't we been addressing these for lots of prior years?

So here I am NED, but having some more pain. Now I've convinced myself to keep trying different exercises, yoga stretches, etc, and with the Spring weather right around the corner, I might kick this in the butt on my own. On other side, my deductible is so high that any doc I go to now will be out of my pocket....so give the old I can try it on my own attitude. Then...if all else fails, try some doc. My thoughts---- what doc???? There's a laundry list of different type of docs...how confusing.

Don't get me wrong, I'm not complaining, just some days we hit the wall and want our OLD LIFE BACK. Since I can't have it back, I'll deal with my NEW NORMAL LIFE!!!

Thanks for listening to my rant....
Jan

jazzy1 said:

Joe & Bluerose
This is a fascinating subject to be chatting about today. I'm NED for 1-1/2 yrs and had chemo and 33 rounds of pelvic external radiation. I've approached both my docs about my lower back pain and the one tells me with a smile, "at least you don't have cancer". One suggests to see my PCP and other to start on pain meds and give it another year. Push it off onto some other doc, but you know what, which doc do they suggest we go to and actually get guidance???? Our healthcare system is such that I could probably hit 4 different docs and still have the pain in my back and going down my one leg....gee! So what's a person to do?

Met a nice oncology RN at my last chiropractor appt and she told me about her latest training sessions. They are just now informing them about all the long-term affects cancer patients are going to see from our treatments. Mentioned side affects will be cumulative and can last 20-30 yrs and beyond. Wow...such a shock as haven't we been addressing these for lots of prior years?

So here I am NED, but having some more pain. Now I've convinced myself to keep trying different exercises, yoga stretches, etc, and with the Spring weather right around the corner, I might kick this in the butt on my own. On other side, my deductible is so high that any doc I go to now will be out of my pocket....so give the old I can try it on my own attitude. Then...if all else fails, try some doc. My thoughts---- what doc???? There's a laundry list of different type of docs...how confusing.

Don't get me wrong, I'm not complaining, just some days we hit the wall and want our OLD LIFE BACK. Since I can't have it back, I'll deal with my NEW NORMAL LIFE!!!

Thanks for listening to my rant....
Jan

bluerose said:

You aren't the only one TJ, take heart in that at least
I have alot of the same issues you have as far as side effects of treatments are concerned. I am sure that I signed all kinds of forms before my treatments for side effects but back then it was a choice of whether I wanted treatment or not, as it is with most of us and really if you think about it - would you have turned down treatment if you knew the side effects ahead of time? You could live longer with treatment but later you will have these side effects? I know I would have said - go for it.

I can't be sure if they even knew what the long term side effects would be because I am of the conclusion that they didn't think we would live this long. lol. I think that the treatments have allowed us to survive way longer than was expected so this is a new frontier for medicine. We are trailblazers really, like the adult survivors of chldhood cancers were to us, there are late effects clinics for them (has been for years) but only one for adults treated as adults which is the Perini Clinic at Dana Farber. Maybe they did know what was down the road but felt life was more important - who knows.

The frustration for me and you and others in our position is that no one really knows how all of this is affecting us so far down the road so we seldom get answers to our medical issues and sometimes we don't present to our doctors in the same ways that people who havent been treated like we have do. I mean that our bodies don't show symptoms in a similar way other do at times. We know our bodies best and you have to keep pushing for care and stand your ground. Eventually you will find a doctor who believes in you.

What province are you in? I am in Ontario and Princess Margaret Hospital is the most up to date of our hospitals. It's a cancer hospital. I had my radiation protocol concocted there but I was treated in Ottawa. You had total body rads too didn't you? I would be interested in hearing how they set you up for that if you could explain that to me. My positioning was interesting to say the least. They try not to radiate too much of the body these days, total body rads seems out of the picture if at all possible. Too much damage, ta da.

We are very complicated patients, long term survivors. Docs have to treat as symptoms come up because they have no idea where we are heading medically as this is all pretty new to them. Little consulation to us eh? Survivorship is becoming a big issue as more and more of us survive longer and so you will hear more and more about this.

You mentioned that there have been no studies done for all of this and that's not the case. Alot has been done and there is a multitude of information online about it all. Groups have sprung up who have done their own research too and sites like this where we can all chat about our own experiences serves to enlighten us to realize that this is happening to others too and so we don't feel as alone and almost crazy thinking it's just us and we have lost our minds. Not true.

There is a group online called ACOR, google them and look through the site. You will be stunned at how much research they have done and how much they have accomplished in getting the word out about issues with cancer survivorship.

I have a couple of concers though about your situation. First of all your mentioning of suicide is something I am concerned about. Depression is common for many cancer patients and survivors and you have to get on top of that, it's fixable, where many of our issues may not be. So please go to your doc, any doc, and get yourself on track there first off. I know you said you have a better doc now but is you depression under control? Maybe I missed somewhere where you said that that was done now.

Can you type up a list of your medical issues as you know them? Not necessarily those already diagnosed just list from head to toe what kind of pains and issues you deal with. It will be interesting to see how many I and others can tick off too.

Talk to you soon.

Blessings,

Bluerose

TJ74 said:

I guess we are guinny pigs
I'm a 20 year survivor from a bmt. I have never been the same. A few years after my transplant, the pain in my back got so bad I couldn't walk. I was put on pain meds all the way up to methadone which I had no clue about, but isn't good for the bone marrow. My gp at the time eventually got frustrated with me because he didn't know what to do with my pain and dropped me. I went for years with no doc and started treating my own pain. I was in a smaller town and eventually got pawned off to the psychiatrists because no one new what to do with me. I eventually found a sleep specialist who has been awesome for me and had apologized on behalf of all the doctors that messed up with me acknowledging that the medical system messed up with me. I have also finally found a doc to manage the pain I'm in. He gives me slow release morph which helps me function somewhat. I was referred to the cancer agency in my town for "counseling" a few years ago, but she had never met someone who had lived as long as I had from a bmt and had to do research before our sessions. She told me that there was no research for people who have live passed five years. Before I met the doc I have now and my sleep specialist, my psychiatrist didn't believe I have depression but couldn't figure out, the physc ward wouldn't admit me when I felt like killing myself because they know I was in physical pain, not mental... Ya maybe now the treatments are better as I was in isolation for almost 2 months as well, but they kept us here. Was the their only job to keep us living with no proper aftercare? Sorry I'm venting but I have had no one understand and I went into isolation for along time. Is this a little harsh, or do you guys get this at all?