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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?

mikek
Posts: 5
Joined: Oct 2000

Rory, I to recieved radiation of the mantle and had my spleen removed in 1974 at the age of 14. I have suffered from undergrowth of the chest and neck and have been told to be aware of possible heart problems. I came to this site in hopes of finding out what others like us have experienced.

rory
Posts: 33
Joined: Oct 2000

Mike - I have done some research on medline for mantle radiation. Apparently, around the time you and I had treatment the radiation was more potent than it is today. Specific late effects appear to focus on lung damage, hypothyroidism, and heart problems. It is interesting the I have developed complications in all these areas. On Thursday this week I am going to see a Hemotologist regarding pain in my left upper chest. Apparently, my Doc believes I have an enlargement of the left breast. Maybe it is nothing, but I am a little stressed that it could be a second development of cancer - I pray that it isn't. What kind of complications have you had Mike?

mikek
Posts: 5
Joined: Oct 2000

Good luck on your doctor visit. I hope that it is nothing. Sometimes the mental anguish is enough. All I have currently suffered from is the hypothyroid and lack of development of my chest/neck. I have had some minor heart problems but nothing to do at this time. I know that they radiated us with to much radiation but I think we were on the cutting edge of survival at the time and that is all they could do. Now,if the cure does not kill us.

I try to live a fairly healthy life style. I move around alot, own a small farm so am always working outside there and bicycle when I can. I do feel a shortness of breath and my heart feels funny at times but again the doctor says keep take two aspirin and keep going. I wonder what the next few years will bring? Again Good Luck this week. Mike

rory
Posts: 33
Joined: Oct 2000

Mike: Keep aware of the heart stuff. I developed shortness of breath and thought it was my lungs since I knew I had some damage from the radiation scatter, but it turned out to be arrythymia's. It wasn't until my thyroid finally failed that I started to develop intense shortness of breath and realized it was my heart. Apparently, the atrial part of my heart was beating rapidly and screwing up the ventricle part which led to the loss of oxygen and shortness of breath. I went to a Dr. who tried to control the instances of the irregularity, but it didn't work. I had a stroke as a result of the atrial fibrillation. I have read recently that if the heart problem wasn't directly related to the radiation, it may have been caused by the hypothyroidism. From my point of view, working on a farm seems like it would be pretty relaxing. Although I live in the city, I own 44 acres of land that I inherited from my father. I have always dreamed of living there...

hawkl
Posts: 1
Joined: Oct 2000

Hi
My name is Gavin I have went through Hodgkins disease and the treatment aswell as all the after affects. I have never talked to anyone about what I was going through or am going through.
I was 20 when I first was diagnosed and had just became a Father. I had decided to be a man and get through it on my own. I'm just now finding out that this was not a great idea. I have just turned thirty and went through something worse than Chemo or Radiotherapy. My wife and I just lost a child. I was told after my treatment that I would never be able to have children ever again.
This was devastating to us as we love children and hoped to have a brother or sister for my daughter. To our surprise 9 years later my wife became pregnant. "Unbeleivable". I got myself checked out yet again and found out that I was now able to produce children. My count wasn't great but it was enough. We were delighted. My wife got to nine weeks then we lost the baby. Totaly devastated. I beleive it is due to the radio or chemo perhaps both.
Have you ever felt useless,pathetic,and a total burden to the people you love? If you or anyone else out there has any advice for me on this matter I would welcome it extreemly. Take Care.

mikek
Posts: 5
Joined: Oct 2000

Gavin, I don't think you can blame yourself for the loss of your baby. I have heard that a miscarriage happens with a lot more frequency than you would think. I cannot imagine that making it any easier though. Sounds like you are only thirty years old and have time to continue your family.

rory
Posts: 33
Joined: Oct 2000

Gavin, I agree with Mike. Don't blame yourself. The Docs told me too that I may not have children. They also said that if I do have children that we had a high risk of them being retarded. Well..., my wife and I proved them wrong. Although, we had 3 miscarriages, we ended up with 5 normal sons. Early on, my wife and I discussed the possibilities as it was layed out by the Doctors, and decided to put in God's hands. Rory

tamis
Posts: 40
Joined: Oct 2000

Gavin, I can relate to you with how you feel. You need to be strong and not put the blame on you. I am 28 with Hodgkins. I was diagnosed last July and under went several Chemo's and a Stem Cell Transplant and then radiation as well. I am now onto my second round of radiation. Anyway, the most devasting thing was I will now be infertile. I thank God everyday, that I was able to have my little girl who is only 2 when I did. If not, I would never have her. I always blame myself and feel so selfish that I can't not give my daughter a sibling, or my husband another child. It hurts the most. I have 2 sisters and brother and we have such a special bond and it makes me hurt more to know I can't do that for my daughter. I keep looking at my positives and what to be thankful for. I am so happy to have this little girl in my life and know that she's a blessing. There is nothing worse than to have something so precious taken from you. Don't give up on trying to have that baby! I am sorry to hear of your loss. don't ever blame yourself. Things happen for a reason, what those reason's are I'll never understand.

becca12056
Posts: 10
Joined: May 2003

Hawkl,
I don't think the loss of your child was due to the radiaiation. As I understand it...since a man produces sperm all the time and environmental factors don't affect their offspring as much as women who are born with all their eggs. I may be wrong, but I learned this in a college genetics class.
Becky

medsec
Posts: 25
Joined: Jan 2011

Gavin, I feel hat way every day.....like my friend who has cancer of the tonsils said, they saved my life and made me a cripple... but we do have worth, it is just hard to feel it at times, like u said their are things worse than cancer and losing a child is certainly one of them...we just have to believe their are reasons for everything whether we understand those reasons or not.. take care....Vicki

chris9655
Posts: 2
Joined: Oct 2002

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

becca12056
Posts: 10
Joined: May 2003

Chris, I will try to put your mind at ease. I am 47 and had HD 27 years ago. I had radiation at the time (when they use to really zap it to you). I have had no recurrence and no problems from the radiation except for a few thyroid nodules and a rapid heart beat. I live a very normal, hectic life. After HD I had two kids, graduated from college, and have been teaching very active 5th graders for 15 years! My kids are involved in everything and I am too! The rad. does have side effects but I figure it saved my life. I am cautious and keep myself checked, but live a very normal, full life. Email me anytime you like.
Becky

tldowen
Posts: 2
Joined: Jan 2009

Becky,
You sound like someone I need to talk to. I had HD when I was 20 and that was 24 years ago. I am now 44. I had radiation at the time and then I had a reocurrance at 29, but it did not move into the radiated areas. This time I had Chemo. My radiation effects have been infertility (however I did adopt a daughter that I wouldn't trade for the world). That was the hardest side effect to swallow until she came along. I had DSIC in one breast and had a masectomy. That wasn't fun, but honestly I was so glad that it wasn't a worse form of breast cancer and I needed no treatments. It is interesting that you have a rapid heart rate because I do too. I developed that in 2000, but my cartiologist said it was not related to the treatments, but who knows. I am also a teacher and teach kindergarten. Over the years I have learned to deal with the fact that I had cancer with paranoia only in spurts, however lately I have been living in perpetual paranoia of the future and worrying about side effects. My daughter is 7 and it scares me to death that something will happen to me before she is grown up. I don't know how to get my mind out of this funk. Getting older is nice but when I get aches and pains I don't know what to contribute it to. I really need someone to help me gain a new perspective on everything and quit being consumed with fear of the future. You sound like you have a good attitude and need some of that!
Tammy

mox2
Posts: 2
Joined: Jan 2009

Hi Tammy,

I don't think a cancer survivor ever stops worrying. I had hodgkins at age 7 and had 2 years of treatment. I had a tumor removed on my thyroid that was benign at 20. 7 years ago at 34 I was told that I was in menapause and would never have children. That to me was the worst news I could have ever heard. I wanted a family so badly, but I too am a teacher and have 20 kids every year. Then 4 months after the menapause diagnosis I was diagnosed with a rectal tumor. Here went more surgeries and radiation and chemo. I can say that not having a family was put into prespective. I have had a lot to deal with and do worry a lot about every ache and pain, but I do feel lucky to be a survivor. I know that my family has been my best support system. I have been thinking of going to counseling now to help me deal with not having children. It is a big loss, but I have 2 beautiful nieces that I adore. I think the fear that you are experiencing is normal and my advice is to give your daughter a hug and believe that nothing more will happen and god forbid it does.....you can fight it:)

Maureen

radeohed
Posts: 5
Joined: Mar 2010

i am a female of the same age and went through the same treatment. I did radiation without knowing the affects and now wish I hadnt. less than 7 months after remission I now have thyroid cancer, a nodule on my lung and liver. I will be having my entire thyroid removed as well as a neck disection. I am not trying to make you stray from the radiation, just do your research and decide if the risks are worth the trouble. The radiation did not work for me as well. my tumors were not shrunk at all just hardened. I hae tumors around my heart and lungs filling my chest that are dead but cause pain. I am on percocet 4 times a day for the rest of my life because of it. please feel free to ask anything, i have done a lot of research. love alicia

medsec
Posts: 25
Joined: Jan 2011

Don't blame you a bit Chris I would never go through it again it has destroyed so much of what life I do have. All people react differently though, but do eduate yourself I wished had investigated it more. They were we got to do it now, and I trusted them.. Big mistake for me. Take care....just educate yourself ...Vicki

becca12056
Posts: 10
Joined: May 2003

Mikek...What do you mean "undergrowth to the chest and neck"? I had HD 27 years ago.
Becky

Jazzie
Posts: 1
Joined: Oct 2003

Becca, you indicated you are longterm survivor who had radiation therapy. At 17 years, I have various minor but annoying health issues. What sort of health issues do you have now? thanks

debraocn
Posts: 1
Joined: Jan 2001

Rory:

I've just joined this list but have some info on long term and late effects of treatment. If you know how to do medical research, look for articles by Steven Hancock, MD (Stanford University) or John Redman, MD (MD Anderson). They are both doing research on the consequences of treatment for HD. Dr. Hancock has done a study on the effect of radiation on the heart - damage to heart muscle, vagus nerve and valves. it is important to be followed by someone who knows about the long term effects of radiation therapy. Good luck

Debra

rory
Posts: 33
Joined: Oct 2000

Thanks alot Debra for the information. Apparently, the radiation I had appears to have been responsible for a lot secondary stuff. I didn't realize the long-term affects that the treatment would have, nor did the physicians. It is great that they have made a lot of changes in the treatment protocol since I was treated in 1974. But hey, if they hadn't treated me then I may not be here today to enjoy my wonderful family and grandchildren even though I have had some bumps in the road along the way. Rory

mindycarey
Posts: 5
Joined: Jan 2001

Hi Rory. I just joined the group and was reading your posting. I was treated for Hodgkins in 1986 with mantel radiation.I also recieved radiation to my abdomen to "sterilze" my lymph nodes there. I was 16 at the time. I have had no recurrence of the Hodgkins but have had several other problems associated with the treatment. I have had pneumonia several times, apparently from the spleenectomy during staging. I also have some carotid stenosis in my left carotid artery. I also have some mid sternal pulmonary fibrosis, though that has not really been causing me any problems thus far. I am currently 31 and have 2 children. A daughter(Samantha) 9 and a son (Nicholas) who will be 4 in March. I have just recently been diagnosed with breast cancer. I found the lump in my left breast New Years eve. Had a needle biopsy on 1/02/01. Mammogram with ultrasound on 1/04/01. Lumpectomy with lymph node dissection and port-a cath insertion 1/12/01. And I just recieved my first chemotherapy treatment on 1/25/01. I never recieved chemo for treatment for the Hodkins but I really had a bad time of it. I am hoping that the chemo dosen't do me in. It is really interesting to hear that there others out there who are suffering form the treatment for the Hodgkins and the long term effects of radiation. I guess I was feeling pretty "cocky" about not having the any re- occurence of cancer even though I have had other medical problems associated with the long term effects of the radiation and the spleenectomy. I guess I just never thought that I would come down with cancer again. I always just asumed that I would end up getting an infection or something that I could get rid of. I would appreciate any feed back that this group could give me. Thanks Mindy Carey

rory
Posts: 33
Joined: Oct 2000

Hi Mindy ~ I have been learning alot about the late effects of the treatment we had. Unfortunately, secondary cancers is a reality. When I saw my onc recently, she listed leukemia, breast cancer, sarcomas, lung cancer, and NHL as known cancers related to radiation. I had a large mediastinal mass removed from my chest and radiation in 1974 (4660 rads to mantle ant./post. and 3000 abdomen ant./post.)and spleenectomy. Late effects are lung damage, heart damage, hypothyroidism, and just recently venous thrombosis of the left arm due to radiation fibrosis of the subclavian vein just above the heart. Currently, I have a small spot on the right lung that they are watching really close. Although it is not found to be PET active, I have to have CT scans every 3 months for the next two years. What a pit!!

I am sorry to hear about your lastest challenge. You made it through this before, you can do it again. I understand that the chemo is not as bad as it use to be. How is it going with the chemo? Are you doing Okay? Many healing thoughts are sent your way.

There are two lists that are pretty active and have provided me with a lot of information. The first list is: Listserv@listserv.acor.org - it provides alot information from others with active cancers and a digest of responses to questions like the effects of chemo.

The second list that I review alot is LT-Survivors@listserv.acor.org. This list has about 300+, and growing daily, HD survivors who communicate with each other, support each other, and share information on late effects continuously. It is also monitor by Stanford MDs who respond to questions posed. They have really been a help to me. Linda Zame is the co-creator of the list and is extremely knowledgable herself.

You hang in there. Join the two list above, you won't be disappointed. Good Luck!

Rory

36walter
Posts: 5
Joined: Oct 2001

I have a whole in the sac that holds the heart and I understand that yes, the radiation causes this type of damage. I also have a heart murmur that they are not sure whether radiation caused it. The thing is, I have had a lot of the 'long term' side effects since remission in 1978, but I pause and think, okay, so if I didn't have the treatment would I even be alive? I think no.. so I try to bear with the side effects and enjoy my 'borrowed time'.
RE: Long term side effects, I go to Dana Farber in Boston for follow up appts. and they are great resources of info. Does the place where you were treated have a survivor's clinic? Personally, I find so much comfort in knowing that all my symptoms are real and legitimate and that usually outweighs the severity of them. (thyroid, premature menopause, the heart thing) etc.
Hope this helps and I don't sound preachy!
:-)

mrosen
Posts: 1
Joined: Oct 2003

in addition to hypothyroidism, secondary cancers and heart issues, does anyone know if low hemoglobin/low energy and depleted immune function are also long term effects of mantle radiation or ABVD? I'm five years out.

dmrichardson
Posts: 1
Joined: Jul 2004

Hi there,

Just registered at this web site and noticed your discussions. I thought it was me. Except that I have been in remission since 1982.
I won't make the response long in the event you are no longer following this discussion board.

April F
Posts: 3
Joined: Apr 2013

I am 30 1/2 years post stage 3 NHL, I was 17 years old and it was 1982. I want through an experimental protocol that was brutal. I am so thankful everyday that I'm alive and have 4 children. I have pulmonary fibrosis and have heart valve disease. One day I will need heart valve replacement. I have become symptomatic with shortness of breath and I'm waiting for my next echo in June. Now I am having neuropathy and pain in my feet with chronic headaches. All my medical problems have all been related to my treatment. I realize I would not be here without my treatment but lately it's been hard to deal with. If my heart issues are not bad enough now having pain walking is wearing me down. I had 15 different chemos and chest radiation. This  is my first post and it's nice to find a site where others understand.

Bonebrake
Posts: 7
Joined: May 2005

I was diagnosed with stage II Hodgkins Disease 31 years ago at the age of 10. Except for removal of my thyroid 16 years ago, I have not experienced any secondary cancers. Because I was treated with some chemo and high-dose radiation throughout the neck and chest, I take three daily doses of Sialor. The drug is manufactured in Canada and is used to treat dry mouth. It is an over-the-counter medication reported to reduce the propensity for lung cancer. I drink a lot of green tea and try to eat fresh fruits and vegetables (including broccoli).
With recent treatment breakthroughs, survivors of Hodgkins disease will likely live a longer and higher quality life. Due to abnormal muscular/skeletal development, I do experience limited pain each day. I also celebrate each new day. I have been married for 17 years, have three healthy, natural children (I was also told I would not have children), and just finished law school after working 14 years as a city manager in three communities. I now work full-time operating two corporations I formed which manufacture and distribute a natural hemostatic bandage product which I invented and sell to the military and medical professionals. I may not live as long as non-cancer survivors, but I have strived to make sure that my life will make a long-term difference. Do the same and be thankful for your current health and modern medical technology.

blueroses's picture
blueroses
Posts: 527
Joined: Jul 2008

I had nhl and had an autologus bone marrow transplant 18 years ago and have atrial fibrulation and now a pacemaker from the drug adriamycin. Doctors confirm that, not sure if other drugs during chemo would damage. I had total body radiation as well and suffer from early arthritis and cataracts from it for sure.

sarahsmurray
Posts: 2
Joined: Apr 2013

How are you doing these days?  My husband had bone marrow transplant after two rounds of chemo and radiation (4000 rads to the chest) 25 years ago.  He is just now being diagnosed with afib.   He's taking all kinds of meds and echocardiogram showed some valve disease and low ejection fraction.   Do you have any suggestions of doctors or anything.   thank you.   hope you are feeling well.

 

 

sarah

radeohed
Posts: 5
Joined: Mar 2010

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's picture
Max Former Hodg...
Posts: 1369
Joined: May 2012

Alicia,

I had a bad run with bleomycin three years ago. I did 12 cycles of r-abvd. The doctor terms it "toxic reaction," which did not go to full fibrosis.

I have badd chemo fog, and my memory is wiped out (I am 56 now).

Know that your trials are not uncommon.

Bless your new treatment,

max

.

Ginger Snap's picture
Ginger Snap
Posts: 3
Joined: Sep 2010

Hi Rory, Sorry to hear, also sorry to say I'm dealing with long term effects too! I find out more things every day. My mom actually gave me this site. I was diagnoses in 1984 with Hodgkins I was 13. Yeah lots of radiation stories.wow. I'm having many lung issues also . A gentleman stated that that there are hospitals that deal with long term affects, In which one is the Mayo Clinic. I have been there, but not for long-term-effects. I have been off of work now since june & have had all sorts of tests done in which I have come across all this damage that these dr's. are seeing.
Sucks that we still are the guinea pigs, well this is why they call it "practicing medicine" right. My story is pretty lengthy & too tired to go into right now. maybe next time if you need any more specifics, I'll try to help you. tired now, have to rest.

Pandemonium Parrot
Posts: 2
Joined: Jun 2010

I was diagnosed in 1976 with Hodgkins. 14 weeks, or 70 radiation treatments later I had a spleen go missing along with about 40 strapping pounds off a 20 year old. Not to mention the delight of radiation sickness.

Fast forward to 2010 and the long term effects of all the radiation has necissitated a, or two heart valve replacements. I'm currently scheduled for a bone marrow biopsy for anemia, which other procedures have failed to identify the cause for the low blood count. Have they broiled my bones, as well as baked my heart ?

As far as treatments or ramifications, I'm not in the know any longer. I'm curious however to speak with others who have experienced symptoms of long term effects of mantel radiation. Rarely do you hear anymore about such large doses of radiation being administered.

I've only yesterday 12/12/10 joined the CSN community so my page or profile are a bit sparse. Certainly I'd appreciate chatting with anyone with simular stories.

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

Hello
I too am a HD survivor, 21 years, struggling w/late effects. Have you found the "Long Term Effects of Treatment" discussion board on this site? There you will find other survivors that have gone through the same things you are, cardiac and/or pulmonary issues, radiation fibrosis, secondary cancers, etc, etc.
Wishing you the best on your BMB.
Cathy

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 1369
Joined: May 2012

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

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

Max,
Ha Ha...the guys at work used to call me Cat!
Anyway, here I am almost 23 years out. I have had 3 bouts with cancer with 2 being HL. The other was breast cancer in 2007, a direct result of the rads I had for the HL.
Take Care!
Cathy

kimsha
Posts: 4
Joined: Aug 2011

I wanted to ask you how you found your late term effects doctors?  I was treated at Stanford University in late 70's and recently treated there for breast cancer.  I had most of my throid removed in 1996 and recently nodules have grown larger again and have all the signs of turning malignant, waiting for results of biopsy tomorrow. I have a lot of other health issues and would like to be under the care of a long term effects doctor so I can better monitor my health.  Any info you can give me would be very appreciated.  Thank you and I hope you are doing very well. 

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

Dear Kimsha,

I found my LT Effects Specialist through a post on this website!  Here is a link that you can search by state and a Survivorshipe guideline:

http://www.survivorshipguidelines.org/

http://www.ped-onc.org/treatment/surclinics.html

I'm sorry to hear you are having symptoms.  Good Luck with your biopsy.  I am awaiting an abdominal ultrasound this Friday.  I am having pain among other symptoms.  Of course I am worried because in the past testing revealed a protrusion on my pancreas.  It's always something.  That's why its helpful to have a specialist so versed in after effects to manage our care.

Please update us on your results if you can.

Cathy

Victoria.e.moore
Posts: 2
Joined: Nov 2013

Hi Cathyp, I just wanted to say thank you for your post!!  I emailed my local LTFu Clinic and made an appointment.  I am a survivor of 21 years, dx at age 16, in remission at 18,  and no doctor at any point has ever, EVER told me anything about a follow up clinic.  I was "cut loose" from oncology about 11 years ago, and they just told me to have annual visits with a primary care of my choice, and of course I spent more time educating the doctor than she did me, which I have discovered to be the norm.  Thank you again for sharing the link.  I have since, shared it on facebook, hoping to give someone else some light at the end of a very long tunnel.

sarahsmurray
Posts: 2
Joined: Apr 2013

how are you doing?   my husband is just now getting problems with his heart.  he had a lot of chemo, adriamiacin, 4000 rads of radiation tot he mantle, eventually a bone marrow transplant all 25 years ago.....was doing great until he started having shortness of breath....has afib.....echocardiogram showed valve disease but cardiologist did not mention it.....he's supposed to get a cardioversion in a few weeks......where did you get valve replacement?  do you have suggestions for doctors to see?

sherry84
Posts: 16
Joined: Jan 2013

I am a 29th year survivor of Hodgkin's Lymphoma who has had numerous amounts of late side effects from treatment through the years. I received mantle radiation along with chemo. I did not receive adriamicin as I see many others have here but was put on a different regiment that was most likely dropped long ago. Thiotepa,Bleomycin and Velban. In 2000 I was diagnosed with blockages to my heart. I started with an angioplasty and cardiac rehab. I was also on high doses of beta blockers and isosorbide since heart rate was high. By 2003, even with all that was being done, I needed to have a quad bypass and an aortic valve. Radiation is like wildfire and what I ultimately needed was serious intervention. My valve was a level 2 out of 4 stage but as the surgeon explained, (he had much experience operating on many former hodgkin's patients) I would most likely need one in less then 5 years. I chose to have the valve replaced the same time as the bypass and with a mechanical valve. The younger you are, the faster a natural valve will wear out. I figured I was looking at at least 3 more surgeries in my lifetime. As the Dr explained it, my valve was in a grey area at that time and it was a matter of personal choice. What is worse, more reoperations with the risk level going up each time or lifetime anticoagulants. I am in the NY area and had my heart surgery at NY Hospital.

I would ask the cardiologist to give you specific details of the echo report and a copy for your records. There are many issues that can develop with the valves (leaky, etc) and because of the radiation and the fact that he is starting to have shortness of breath, he should be followed closely. There is a site called ValveReplacement.org that is for people with valve and other heart issues that you might want to check out. They offer a wealth of knowledge with this and there are even quite a few on the forum who are Hodgkin's survivors.  Hope this has helped. Good luck with the cardioversion. Wishing you both all the best.

Sherry

welagold
Posts: 3
Joined: Dec 2010

I am not a Doctor but I am a person that research and pray for answers and the holy spirit always gives me the answer. Well, my husband was diagnosed with Hodgkins Non Lymphoma in 1993 and under gone radiation and chemo treatments but have been in remission, in that time period we converted our home over to all natural products and taken the harsh chemical and toxins out, because it is fact that these household products are destroying our bodies, however in 2008 he started back with the night sweats,mood swings,feeling fatigue, so after going to the doctor, they noticed that he has another lump growing in the same area as before, so we prayed and asked the holy spirit to intervene, apparently the radiation and chemo treatments from the cancer before destroyed some of his good cells as well as the bad, which still left room for disease and infection to set up. So what I did I researched and got him on a natural vitamin supplement that is the best in North American with an absorption rate of 85% compared to GNC, Vitamin World, Centrum, One a day at 3-7% so his body is getting the highest rate to recover and restore the immune system which has turned his whole system back to normal, the doctor didn't know what to do, because the before MRI and scans showed one thing and after showed nothing, at first they wanted to put him on all of the prescription and I said no because one side effects will affect the body and then the doctor gives something else to combat that side effects and more your body become immune to free radicals which destroys your body and break down our system so that all of these diseases and inflamation of pain can take over our bodies, so we have boost his immune system and he is doing great.

I have a friend that was recently diagnosed with throat cancer and they give him alot of prescriptions to take along with radiation and chemo, however, his wife got him the vitamin supplement that my husband is taking and a few days ago, the doctors took him off the radiation and chemo, he was suppose to have many more treatments but the doctor said his immune system was healing faster than normal and we can only thank God for the supplement line.

I was diagnosed last year in September with Fibroids and they wanted me to have a hysterectomy but I started drinking alkaline water along with increasing my intake of my vitamin supplements and after about 3 months, went back and nothing was found, our bodies are like vehicles but we only have one body, our bodies will restore itself but there are certain things we must do to protect and provide nornishment for it to restore properly.

We are claiming victory for a great outcome with the doctor. Help is here for you, so just reach out. If you need the name and information just email me at welagoldinfo@yahoo.com

Tuscany57
Posts: 4
Joined: Oct 2011

Hi,
It's sometimes so overwhelming trying to orchestrate follow up care isnt it?
I am a registered nurse and finally researched a way to do this since I was not happy with results of tests being overlooked and relaxed medical care, we have to be so on top of this. I sought out my cancer center in Boston and found they had a survivors clinic and it has been a big help.
At age 16 I had Hodgkins, treated with mantle radiation and splenectomy, at age 37 I hadbreast cancer, mastectomy with reconstruction and 6 mos of chemo..CMF, at age 50 Renal cell cancer, treated with l kidney removal.Now being evaluated for a thyroid nodule..fine needle aspiration is inconclusive so trying to decide if it should be removed. Problem being? the mantle radiation from almost 40 years back makes it a risky surgery. I have been on synthroid then levothyrovine for 34 years. I have had 2 basal carcinomas removed from my back (radiation field).

I would like to summarize from what I have researched,and learned at the survivors clinic what your highest risks are:
Breast cancer - don't WAIT! or watch a lump, have it biopsied (mammography does NOT read everything)
Lung Cancer- if you smoke, do what you can to stop!! Mantle radiation intensifies your lung cancer risk- get periodic CT scan (not too often due to it adds more radiation to you)
Thyroid cancer- get a baseline ultrasound tomorrow!!! get lab work to determine if med needed and get follow up scans
Cardiovascular disease- have annual lipid profile drawn and any abnormal values should be treated AGGRESSIVELY, more so than 'nornal' patients because we are all high risk for heart attack and stroke. Get echo cardiogram and stress tests every 5 years and do not ignore cardiac symptoms!
Dermatology- have skin checked by a dermatologist every other year
Pulmonary- get a set of PFT's done (pulmonary function tests and an annual chest XRay
Infection- not all clinicians will be aggressive enough to give you antibiotics for a fever or potential bacteria infection- without a spleen or with radiation to a spleen you cannot fight infection as others do- insist or find another medical doctor if they do not treat you properly for fever etc- sepsis is a huge risk (get annual flu shot, and pneumonia and mengitis vaccine every 5 years)

I know I probably left things out! But all the above things are very important to present to your medical provider.

Here is a link to one article that may be helpful:
http://www.cancersurvivorsproject.org/hd2008longtermeffectarticle.pdf

Best to all of you out there and glad we have each other!

Tuscany57 (not from there but wish I was lol)

justme2530
Posts: 3
Joined: Jan 2012

In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been through many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan

justme2530
Posts: 3
Joined: Jan 2012

In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been through many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan

justme2530
Posts: 3
Joined: Jan 2012

In 1985 a year after the birth of my 1st child, I was told I had Hodgkin's, I was 23 yrs old. After having my splean removed I began radiation treatment at Washington Adventist Hospital in Silver Springs MD. After 5 yrs cancer free was told I was in the clear the chance of it returning was very slim. I went on to have 3 more healthy children and been fairly healthy until aprox 2 yrs ago at the age of 48 started having shortness of breath and neropathy and A-fib. Now 2yrs later at age 50 I've been hospitalized more and I can count for recurrent pneumonia and told I now have the following medical issues Interstitial pulmonary fibrosis,Anemia,Hypoxia,Lung mass, hypertension,Pulmonary hypertension, low serum cortisol level, atrial flutter with rapid ventricular response,adrenal insufficiency,COPD exacerbation, Leucocytosis, A-fib, heart failure. I have a no luck with doctors, have been though many with no answers. I would love to hear from anyone with information or experiences. Thank you Susan

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

So sorry that you have been dx'd with the after effects of our treatments. Are you being followed by a long term effect specialist or cardiac docs that are well versed in radiation and chemo effects to the heart and lungs? I have found the LT effect specialist vital to managing my health. If you need any further info, I could PM the links to Specialists and other info that would be helpful. Hopefully, you all ready have a specialist managing this for you.
Best wishes,
Cathy
HD 1989 - RADS
HD 1994 - ABVD
IDC 2007 - DBL MX

1Farmer
Posts: 1
Joined: Jun 2012

I was 21 when I was diagnosed with stage 3a Hodgkins. I had 12 wks of ABVD and 30 radiation treatments to part of the chest and neck. I'm now at 15 years of no other major health problems. I have never had the full energy that I used to have. I'm just worried that something else might pop up.

My tumors in my neck dissapeared within 24 hrs of my first chemo treatment. Has anyone else had that happen?

I thought the doctor could have cut short the treatments but he put me through them all, and then the radiation! At least it never came back.

I hope someone finds this encouraging.

Best wishes to all as well!!!

TR B

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