long-term effects of radiation

chris9655 said:

my god, i am just finishing up with abvd chemo, 16 treatments, and my doctor said there is a possibility of radiation when i'm done. i didnt know so many things can go wrong from radiation but i definitely will tell my doctor that i won't go through it. am i being rediculous?? can someone put my mind at ease please. i apologize, i am a little freaked out. i'm 24 and this has been a really long and arduous road for me. i'm sure you all understand.
thanks
chris

radeohed said:

diagnosed with secondary primary cancer
I am new to this site and I think I have waited too long for a support network. lol. I was diagnosed with HD June 6th 2008 with stage 3b disease. I am now 24 years old. I received 6 cycles of ABVD Chemotherapy with adverse effects to Bleomyacin after 1 cycle and was taken off. I then received 18 treatment of high dose radiation. I was officially in remission in March of 2009. The worst or at least the most annoying effect has been damage to my memory! I have just had a biopsy on my thyroid for a nudule that was present 7 months ago but was not told about. It has spread to lymph nodes as well. A full lymphodectomy will be done and they want to do radioactive iodine treatments as well. I really think i will opt out because radiation is what is causing my papillary carcinoma now , though I know it is nothing like external radiation. I also have questionable spots on my lung and liver as well. I dont really know what i am asking. any thought will be appreciated. i am afraid i am just going to keep getting cancer after cancer until one of them gets the best of me. sorry for the long post and thank you all. love alicia

Max Former Hodgkins Stage 3 said:

"Long Term"

Cat,

I used to follow a differnt support Board after ending treatment three years ago, and then found this site more or less at random a month or two back. I had never noticed the "Long Term Effects" site, so I appreciate you mentioning it.

Wow. Three rounds in the ring with HL. I have lung toxicity, neuropathy, and little remaining in the way of memory, but I cannot imagine three bouts with HL. Thanks for your contributions here.

max

JK said:

long term effects
WOW, I too am 22 years out of treatment for hodgkins. I just joined this site. Im looking for ideas/help with long term effects after chemo & radiation. My doctors, many as of late, have thrown their hands up with a diagnosis of cognitive disfunction, chemobrain, organic brain syndrome, (take your pick). My latest issues are memory loss, difficulty producing the right word when speaking, difficulty concentrating, multitasking and FATIGUE. I have seen a few neurologists, hematologist, cardiologist, primary care I may be forgetting some! I work as an engineer. In 2010 this team of doctors after testing & documenting my memory loss, energy loss (I nap nearly every afternoon to get thru the day with a night of sleep) decided I should go on long term disability. Not good! I did short term disability from work for 6 months hoping to recover. Thank God my job allows me to stay on part time. But it my cognitive issues and fatigue become more of an issue at work. I sure would appreciate any info to pursue to try to find answers if not help in this. Sorry for venting, I don't run across many people who can relate to what I deal with every day. Thank for posting & listening.

Sara11 said:

Yes, and Yes to all questions!
They did not know when we were treated, it was experimental and no long-term studies were there to guide the MDs experimenting. I was treated in 1968 and I had no choice my doc father decided for me! I can honestly say the first signs in retrospect started when I was 28, however, it took me until I was 50 to research medical journals and found 65 abstracts to support my suspicions! My PMD said I was over reacting to my information gleaned! I said no and get me someone who can explain this to me. I went to a radiation oncologist who spent 2 hours going over research and explaining the 5 most likely ways I would die! Then he wished me luck, he had no sage western medical advise for me! I'm a nurse and fortunately healing and surviving have been career long questions for me. I just had a valve of 10 years ago replaced and major reconstructive cardiac surgery that put me into multiple system failure and will not be going back to the stresses of my 41 year career. The electrophysiologist said he could only be 40% successful in my case and referred me to an exceptional cardiovascular surgeon. I'm now 3.5 months out from that experience and due to complication I find I have 2 more compression fractures in my thoracic spine. The Afib had been at bay for 8 years with exercise, then suddenly popped back into my life in the middle of a busy ER shift while I was pushing meds on a young lady having an allergic reaction, then not again until early March and then it got progressively worse. Well I made it through the "high risk" surgery and at my follow up with the surgeon in September her said I had less that a 50% chance of converting to Normal Sinus Rhythm and he would advise against ablation with my particular heart, well that was 9/16 and 10/5 I was in Sinus Rhythm on my own and while the heart still struggles I know as it gets stronger it will be stable and I can get rid of the warfarin I have taken for over 10 years and have super greens again and my bones will be happier. I learned a great deal in researching my own issues around radiation that it gave me a wealth of knowledge to teach to my patients. That 44 years I gained, so did the patients I have cared for and their families and I'm still learning at 62.5, My issues involve my lungs, pleura, heart, bones, thyroid, teeth, carotids, and teeth(this part was easy, jusy expensive and timely dental care)!

Sara11 said:

It is what it is!
Maggie, I have a friend who says that all the time and sometimes I find my self saying as well now. I have my days where when alone I can rant and rave and cry. That's part of the grief process for having choice taken from me, like going to work. I have found as the late effects take over more of my life it can be harder to reinvent a new life. This last round I expected 7 days in the hospital, I did not expect pericarditis, renal failure, right sided heart failure, liver failure, some difficulty finding words, phonemic and verbal aphasia, and recurrent pleural effusions (13 taps and 16 liters in 3 months and no end in sight) and major stomach distress (poor appetite, distension, continual belching) and I'm short of breath on exertion and can't sleep without O2 and on top of that the aggravated compression fractures from the bed-rest, weakness sudden weight loss and muscle atrophy. Have to say this is the biggest challenge of my life and I have done it all with out pain meds or the anti-depressants my PMD wanted me to take; I told her I want to feel and process what I'm going through. If I had not had the surgery I would have been dead by now; when they re-opened my chest after 10 years they found my aortic root, arch and part of my aorta where stone; I'm surprised I did not code at work and leave my co-workers to deal with me dying on their watch. As I said before I have had 44 years and for most of those years I was quite active, but now enough is enough! I will get back as far as I can and then I will write about surviving and hope I have the time needed to complete the book. My recovery involves organic food only, forced walks with my Rottweiler Sorcha, many supplements ( I had the luck of working for a nutrition research center on aging when I was in my early 30's), chiropractic care, acupuncture, and massage! I was fortunate that part of my work experience was cardiac critical care and cardiac surgery and for the last 20 years I was night charge nurse in a busy ER; Afib cut my last shift in April short. I have always told my patients learn all you can about your disease process and treatment as the enemy you know is better then the one you haven't met, you can at least develop strategy!

Sara11 said:

Bone surgery
Maggie, what supplements do you take for your bones? You want a good Calcium, Magnesium supplement that has at least 1000 mgs of Magnesium, Lysine 500 mgs 2x/day with water or fruit juice 1/2 hour before eating, 3mg of Boron (I use a Twin Labs product), and vitamin K (which I have not been able to have for 10 years due to warfarin). SAM-e is also one I've taken in the past for winter bone pain, but now I'm going to take it consistently. The Boron, K, and Lysine help to put Calcium back in the bone and take the calcium at bedtime. You may know all this already but on the chance you don't hope this helps. Also SAM-e and 5-HTP help with mood, I started 5-HTP 200mg at bedtime a number of years ago and anxiety and depression where improved after only 3 days...., In the near future here I hope to get my cardiologist to refer me to the cardiologist in Stephen Hancock's Clinic at Stanford to see what I can do to prevent this valve from turning to stone in 10 years.
And, I believe writing about what I have survived others will have the strength to do the same; this has been the biggest hurdle to date and it will not be until after my 63rd birthday (survival year #45) that I will even be close to base line and I hope to convince the docs I have by then to put me on permanent disability so that I can enjoy what health I have left and cherish this very expensive heart to the insurance company and to me physically, spiritually and emotionally. Be sure who ever does your operation understands the late effects of radiation and is more than prepared for what he finds when you are under! I was more than the cardiac surgeon "bargained" for but, he got the job done and all might have gone smoother if they had not put me on Colchicine for pericarditis as it shut down my kidneys and that started the rest of the cascade of complications. The surgical team said they were not used to patients as knowledgeable as me and I suspect they would do well to have a few more!

cathyp said:

calcium
Sara,

Has your knowledge or research changed your thinking on Calcium supplementation? Calcium has been in the news lately as high levels may led to clotting abnormalities and a greater risk for heart attacks and strokes. My Long term effect specialist at MSKCC has suggested the calcium in my multi vitamin is enough. He did a baseline bone density when I first started seeing him and I am monitored yearly. I'm anxious to hear if this has changed your thinking.
Many LT survivors with cardiac issues have been treated at Stanford. There is a leading Cardiac surgeon there that knows radiated hearts. Have you sought out a LT Followup clinic? It seems you would be benificial to them and they may help you too! I am a 23 yr survivor of Hodgkin's Lymphoma treated with ABVD and RADS. I was dx'd with IDC in 2007, a result of the RADS tx. Like you, I have many late effects. I find comfort knowing my LT Clinic care providers are managing my care and worrying for me.
Good luck and best wishes. Someone once said, "survivorship is such a blessing and a curse".
Cathy

cathyp said:

calcium
Sara,

Has your knowledge or research changed your thinking on Calcium supplementation? Calcium has been in the news lately as high levels may led to clotting abnormalities and a greater risk for heart attacks and strokes. My Long term effect specialist at MSKCC has suggested the calcium in my multi vitamin is enough. He did a baseline bone density when I first started seeing him and I am monitored yearly. I'm anxious to hear if this has changed your thinking.
Many LT survivors with cardiac issues have been treated at Stanford. There is a leading Cardiac surgeon there that knows radiated hearts. Have you sought out a LT Followup clinic? It seems you would be benificial to them and they may help you too! I am a 23 yr survivor of Hodgkin's Lymphoma treated with ABVD and RADS. I was dx'd with IDC in 2007, a result of the RADS tx. Like you, I have many late effects. I find comfort knowing my LT Clinic care providers are managing my care and worrying for me.
Good luck and best wishes. Someone once said, "survivorship is such a blessing and a curse".
Cathy

cathyp said:

Blessings
Awww....thanks Maggie! Those 23 years have given me 2 beautiful daughters, one born during a recurrence after I finished radiation treatments and the 2nd daughter was born after I completed chemo treatments. There has been so much life along the way. I try to focus on that and let my medical team manage the late effects. I just like being an advocate to get childhood and young adult survivors of Hogkin's, Lymphoma, Luekemia, Wills Tumors, Sarcomas, etc to add a Long Term adult followup specialist to their team.

All the best to you,
Cathy