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long-term effects of radiation

rory
Posts: 33
Joined: Oct 2000

When I was 21 I was diagnosed with Hodgkins. At that time the Drs. told me that I would have to undergo a splenectomy and mantle radiation. They didn't tell me that the treatment would damage my lungs, or cause hypothyroidism. I have now development heart atrial arrythymias requiring an AV Node ablation and pacemaker. What I don't know is whether the mantle radiation I received in 1974 caused the heart condition. Also, I am becoming concerned about other long-term complications and high risks from other cancers. What has been the experience of others? Has anybody ever researched this? Are there any studies or resources? Who do I go to for answers?

JK
Posts: 1
Joined: Jul 2012

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.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1050
Joined: May 2012

JK (not "JFK", right?),

I finished chemo (abvd, 12 infusions) over 2.5 years ago. I feel my memory was wiped out, like something from Star Trek. I even have balance problems, difficulty walking at times, and other issues. My reasoning/analytical abilities do not seem to have been impairerd. (My life's work has been split between teaching mathematical logic and electronics.)

I have never read anything that suggests that there is a treatment for chemo fog. If there is, let me know !

max

ncvalady's picture
ncvalady
Posts: 1
Joined: Oct 2012

I was treated in 1965 at age 15 with cobalt radiation only. After that, I remained heathy and have had a normal life (marriage, one child) until 1997 when breast cancer was discovered by a mammogram. Much to my dismay, I was not being followed carefully for a secondary tumor, although in the 1990's it became clear that breast cancer was much more likely for me than for others--even those with a family history. I had chemo, radiation, and a lumpectomy at the University of North Carolina. I was lucky--I have aggressive health advocates and I was able to obtain my earlier radiation records from the University of Virginia--otherwise, they were recommending a double mastectory as the premise was I couldn't tolerate further radiation.

I have been fine since then. I have GERD, but it's managed by medication. I also have mild aortic stenosis, but that's likely due to a congenital bicuspid aortic valve. I think the chemo in 1997 affected my sense of smell and I have mild neuropathy, but all that's pretty minor for a 62-year-old woman who was treated 47 years ago. Actually, the worst part of it all was that my family kept my condition a secret and I found out that I had Hodgkins by accident (and assumed I was dying). But that was the earlier generation's way of dealing with things.

I would like to find a Late Effects Specialist--I wonder if anyone one knows if one is available in the Durham/Chapel Hill, NC area?

roryhorsburgh's picture
roryhorsburgh
Posts: 16
Joined: Jul 2012

Hi Rory. My name is Rory. Whenever I see another with the name Rory it amazes me. You don't hear that name alot. Any way I was diagnosed with Hodgkins Lymphoma in March 2011. What are the odds? I know you haven't posted in years but I just wanted to wish you the best. I hope all has gone well.

Sara11
Posts: 8
Joined: Mar 2004

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)!

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sara,

Thank you so very much for sharing your story. I do understand, being a nurse in the
medical field does give you an advantage. It was so kind of you to take the time
to type all the information.

What I also wanted to say. It truly amazes me when I read some of the posts. And I include
myself. How informed we all are. Especially not being in the medical field. My oncologist
is always so surprised by all my questions and knowledge. Still, there is so much I still do not know.

I am so sorry for all you went through. Maggie

Sara11
Posts: 8
Joined: Mar 2004

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!

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sara,

You really impress me. I do believe when you type all you went through, somehow it gives
you the strength to go forward. It is some what like going for theraphy. It let's loose
the poison that has festered in your mind for years. My goodness, all you went through
and survived. Surely, you will survive this.

I too, eat mostly organic and take vitamins. Unfortually I do have to take pain medication
for the horrible pain in my hip. I would not have a life without the pain medication. I will have hip surgery after the holidays. I am doing research on finding the best doctor
for my hip surgery. I have never taken anti-depressants. until Feb 2007. Way before I was dx with NHL. Something happened to me after my husband passed away. I did try and stop. The depression returned and it was horrible. I just thought you would want to know.

I pray for you to continue despite all your set backs and not give up. It does seem like
you are just doing that.

Blessing and hugs. Love Maggie

Sara11
Posts: 8
Joined: Mar 2004

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!

miss maggie
Posts: 929
Joined: Mar 2010

Hello Sara,

I take multi vitamins and minerals, 2000 mg vitamin D3, 1200 mg fish oil, 65 mg iron 5 times a week (my iron levels were a bit low, there is no internal bleeding) and 500mg to 1000 mg chewable vitamin C. I take daily.

I am feeling good with plenty of energy, and in remission for 2 years. I will not take any more supplements. The one thing holding me back at times is hip pain and knee pain

Take care Maggie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

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

Sara11
Posts: 8
Joined: Mar 2004

My research on the alternative sites pushes for more magnesium that in the past and in countries where osteoporosis is lower than here it is more 3 part magnesium to 1 part calcium. Part of the reason to talk with the cardiologist that works with Stephen Hancock is to clarify the role of calcium in my stenosis and try to determine what I can do differently to protect this valve or I'll be at the end of my survivor-ship in 10 years. yes, it is a blessing and a curse! Harvard did not do as good a job of follow up as Stanford, but in the 60's they were both experimenting. A few years ago I listen to a book called "The Emperor of Maladies", It is about the history of cancer and cancer treatments and research, quite interesting! My oncologist was mentioned in the book! The good things is they (medicine) is finally acknowledging what the effects are. Now I just want to learn more about protecting the surgery that I just paid for so dearly. As for clotting disorders and calcium, I'm taking warfarin since my first valve was titanium and now I had been in AFIB, but I will research what you have mentioned, no new knowledge is ever wasted! Vincent Gaudiani at California Medical Center did my procedure. My issues really started to surface at 28 years out when I broke my back the first time! Sara I'll get back on the calcium question!

Sara11
Posts: 8
Joined: Mar 2004

Cathy, I did not find anything about clotting and calcium unless the calcium levels in the blood are high and that is easily checked in a basic chemistry blood test. What I did find is that the warfarin I take, the interference blocks Vitamin K, so calcium can not get into the bone, so it essentially lays bone down in the valves and vessels, this would certainly explain why my aortic root, arch and aorta had turned to "stone", My blood calcium was normal but that was because the excess was being stored up in my heart valves. First thing Monday is to get the OK to quit the warfarin and pump some vitamin K back in my body and for while get my calcium from my diet only; I do not want this valve going by the way of the last valve! And I will talk to my PMD about Calcitonin, a hormone produced by the thyroid, so if yours is not working you don't have enough of it to keep the bones healthy.

miss maggie
Posts: 929
Joined: Mar 2010

Dear Cathy,

It is so nice to see you online. Hope everything is well.

I agree, too much calcium is very dangerous. I am so sorry for all the effects you are
now suffering from treatment. The good news, being a survivor for 23 years.

God Bless and hugs from Maggie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

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

miss maggie
Posts: 929
Joined: Mar 2010

Dear Cathy,

I appreciate so much you reminding me "there has been so much life along the way"

I have to admit I am feeling a bit down this morning. Since having my bmb in Oct 2009,
my hip is getting worse and worse. Right now I am depending on pain medication. I realize
I can no longer put surgery off. I was going to wait until after the holidays. Not sure now.

Is there anyone on this site that had hip surgery? I would appreciate it so much hearing about your experience. It's ok to tell me the good and bad. I think I am a big girl now??

All the very best to you also. Hugs and love Maggie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

Hi Maggie,
I sent you a private message in response to reading another post from you re your hip before I read this post. I work for Ortho's and my mother was a hip replacement patient. My mom had her surgery in November. I had Thanksgiving at my house but she made most of the side dishes and she went on to host Christmas Eve. In the spring she was polka dancing and that summer climbed waterfalls! The key was she had a fellowship trained hip surgeon, did her physical therapy before and after surgery. It paid off because the pain medication was stopped days after her surgery. Her quality of life sky rocketed! Her only regret is that she wished she did it sooner.
Good Luck Maggie!

yesyes2
Posts: 461
Joined: Jul 2009

Hi Maggie,

I had double hip replacement surgery in 2006, 1 year before my lymphoma diagnosis. Prior to the operation I could not get my legs appart more aboout 1 ft. I was in constant pain and on pretty heavy pain meds. Now remember that I had both hips done at the same time. I was off pain meds in less that 24 hrs. after surgery. Within 2 weeks I was walking a mile a day and in less that a month I was off any type of walking aid. In fact I carried my crutches on a mile walk. Before the operation I could not walk 5 feet with out help. The worse thing was prior to the operation I had to be off all my arthritis meds for 2 weeks. The pain at that point was pretty intense at all times.

My right hip is perfect. I do have problems with my left hip which started about 3 months after surgery. Really pisses me off. And I did lots and lots of research on doctors all over California to find the very best. So you never know. And remember I was really in a bad way by the time I did the surgery. And I am not sorry I had my hips done.

Cathy is so right. You need to chose your surgeon carefully. It's best if hip and/or knee replacement is all the doctor does. In my opinion you don't want a general otho doctor.

Good luck to you. I have never met anyone who was sorry they had their hip replaced.

Blessings,
Leslie

miss maggie
Posts: 929
Joined: Mar 2010

I am so encouraged reading both of your posts. Cathy, I forgot to mention your mom in my private message to you. It is amazing to read your mom is 77, had hip surgery in November, and helped with Thanksgiving.

Leslie, how encouraging to read your path to a new life free of pain and medication. I understand so well not being able to walk far. When in a store, I am always looking for boxes high enough to sit on.

I thought I had all the information I needed as far as choosing a doctor. Along came Cathy,
with additional homework for me to do.

Thanks to you both, I am no longer afraid. Love you both Stay well and happy. Maggie

cathyp's picture
cathyp
Posts: 366
Joined: Dec 2009

You are welcome Maggie. Hopefully you'll find the perfect fellowship trained hip/knee replacement surgeon. Are you on Facebook? If so, you'll probably get tons of recommendations from friends who had someone close to them go through surgery, if you ask. Keep us updated!
Cathy

miss maggie
Posts: 929
Joined: Mar 2010

I am sorry, I am not on Facebook. As you can see, I have so much time today to write and answer some of the posts. I have to admit it is so nice.

Anyway, I wrote in a prior post, my orthopedic doctor is fellowship trained. He is older, maybe 64, is that old for surgery? I want Dr. David Hirsh. LOL

I have checked some of my resources. Best orthopedic surgeons in New York, Manhattan and the Bronx. These doctors are suppose to be the best of the best. Fellowship trained is hard to find. I will probably have to go into Manhattan. Dr. Neil Cobelli works with Dr. Hirsh, but I don't believe he is fellowship trained. I have plenty of time for research.
I can't thank you enough for your support.

Hugs from Maggie

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Miss Maggie,
I'm really sorry to hear about all the pain you're going through! I wish you all the luck into finding the best Dr for your hip surgery. Please take care of yourself and I'm sending you a HUGE HUG.

Sincerely,
Liz

allmost60's picture
allmost60
Posts: 3163
Joined: Jul 2010

Hi Maggie,
BIG hugs from me too! You let us know how things go and I will keep you in my daily prayers. My Aunt had both of her hips replaced at age 84 while battling her breast cancer. She did great after her two surgeries and gets around just fine. Her cancer is back, but we will beat it back again, just like the other 3 times it came back She will be 87 in Dec and she's one tough lady. Hope you find the perfect doctor...let us know. Love you...Sue
(FNHL-2-3a-6/10)

miss maggie
Posts: 929
Joined: Mar 2010

Dear Sue and Liz,

Thank you for your thoughts and encouragement.

I just want you and all to know. In the future if my NHL never came back and was in total remission forever, I would still come back to this site. I feel I have gained so many friends that I now consider family. I love all of you and pray for all.

Love Maggie

KarlawithaK
Posts: 4
Joined: Jul 2012

I am so happy to read posts from several Hodgkin's survivors treated in the '70s. All that radiation and still here!

I was treated at Strong Memorial Hospital in 1977 with mega doses of radiation, so that brings me to 36 years out of therapy. 

Any effects I have experienced are only in the last year or so. My current issue is heart related. Doc says I will need mechanical heart valves. I also had breast cancer last year. I had the tumor and all breast tissue removed and replaced with life like silicone. The surgeons did a good job and I do not anticipate any more trouble in that area. 

I would like to know: 1. Is there a data base out there anywhere of people who were treated in the 70s? and 2. Has anybody been treated with hyperbaric oxygen treatment?

Karla

 

slessurb
Posts: 5
Joined: Sep 2009

new user.

 

Hodgkin's disease,  treated 1981, age 19

52 years old today.  overweight.

radiation only, chest and belly.  splenectomy.  all done at MGH

long-term effects i've experienced:

- heart: aortal stenosis, going to need valve replacement soon.  high blood pressure.  some arterial calcification/hardening.

- thyroid nodules (large), taking synthroid.. they say not cancerous yet

- neck and shoulder area bones under developed

- schwanoma (2013), large nerve sheathe tumor removed from back.spinal chord....in radiated zone

- renal carninoma (2009) not sure if radiation related, partial nephrectomy

- perpetual high WBC, no explanation

concerned about things accelerating and/or getting worse.  I fear a secondary cancer, heart/stroke surprise.

am being watched by excellent doctors who say they understand the long-term effects....but a little worried that they are still being reactive rather than pro-active.

anybody have the unexplained WBC?  other questions/comments?  

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