20+ Year Survivor Would Like to Hear From Other Long Term Survivors

On Aug 15, 2007 12:00 AM bassetgreg wrote:

 

On 2/17/2007 Geridb wrote:

I am 46 years old, a 10 year survivor of stage 1A Hodgkins Disease, treated with chemo ABVD.  I am in good health and living a busy and productive life, I am blessed and very thankful!   I am experiencing a chronic cough and have gone to a pulmonary specialist, my pulmonary function testing is great, he treated me for a post nasal drip, and asthma related symptoms, Advair, Flonaise, Singulair and even Zantac.  I went for allergy testing to see if it was allergy related, but that didn't show much... dust mites and some seasonal allergies.  Being on all these medications didn't seem to help much so I've since stopped all those medications and I'm trying over the counter remedies not wanting all those steroids.  I was curious if any other survivors have chronic cough problems?  I do work in a salon so my next step is to find other employment to get away from all the chemicals.  Any info would be appreciated.  Thanks...  Geri

 

Hi, I'm a 20 year survivor. I had chemo twice and  radiation and a bone marrow transplant. The transplant almost killed me but did cure me. I too suffer from a reoccuring cough. It occurs after I eat(sometimes) , when i'm tired, when I lay on my back, and more often in the winter when its cold or damp. So far  I've just ignored it and pressed  on but recently I find its getting to be more annoying. I also suffer from nosebleeds, post nasal drip(when its cold or damp) and shortness of breath (especially after sudden or streneous phsical activity) Oh yes, and I have battled bronchitis the last couple of winters.  Maybe I should see a pulmonary specialist. Did they help you much? I hate pill popping but if  I could learn some specific exercises to improve my lung function that would help. I also have an intolerance for cold(especially in the fingers) Woe is me! Overall I can't complain, I live a healthy and active life! Anyone recommend some exercises too improve the lungs?

Thanks

I'm a 31 year survivor of Hodgkins Lymphoma and mantle radiation. I'm a 45 year old mother of 4 (and they said I'd never have children, hah!!). Anyway, I had a chronic cough and it was from my acid reflux. I was aspirating it in to my lungs while I slept. It seems like most long term survivors have problems with their esophagus. I have a lot of problems with it. I won't bore you with the details unless you want them. I also had my aortic valve replaced 4 years ago. I'm on tons of medication and am now worried about breast cancer. These side effects are scary! Radiation is the gift that keeps on giving, isn't it?!

Just stumbled across this message board.  I think I may be one of the "old timers" by having just crossed the 35 year mark.  I was diagnosed a Stage IIIB in 1977 at the age of 19.  Biopsy showed positive in neck tumor, spleen, and paraortic nodes.  Spleen removed and then had 2 months of radiation therapy at National Naval Medical Center in Bethesda.  Followed up with 6 months of MOPP and declared to be in remission soon after.  I have had no recurrence of Hodkins but like others, have had a whole host of other treament related problems including:

*  Numerous intestinal blockages requiring hospital stay and finally resulting in having 4" of intestine removed

*  Severe Gastroesophogeal Reflux.  Currently taking Protonix and a probiotic every day which really works!!

*  Sterile - Zero sperm count following diagnosis

*  Aortic Valve replacement - 2009.  Severe aortic stenosis

*  Minor amount of pulmonary fibrosis

*  Numerous basel cell cancers removed and a melonoma discovered and removed from clavicle.

I am probably leaving something out as I have lost track of all the issues but must say that despite all this, I am very healthy now and feel better at 53 years old than I have in a long time.  A good diet, plenty of sleep, and moderate exercise is vital to ones long term survival.  I have also taken fish oil capsules for over 5 years now and eat lots of salmon.  I think the benefit from Omega 3's are just starting to be understood.  Oatmeal and fruit every morning keeps the digestive system working great also.

I do my best to remember every day how lucky I am to have survived this long.  Every day is a gft.  I don't count on living to be an old man so I try to figure this into the plan for however long I am on this earth.  Hopefully I will be pleasantly surprised

Denise-I am 42 years out, mantle radiation at age 21 at Kaplan Instite at Stanford, 1970. VERY important you get you heart everythinged testwise. I had an almost complete block to my Right Coronary artery right exactly where it opens to the aorta and had it stented. Found by a prayer about what I thought was something else!!! The openings to the RCA and LCA are vulnerable-as is the Aorta valve. Just had mine replaced a year ago, but it was watched forc15 years. Cardiologist never even THOUGHT to look at my coronary arteries. Zero plaque mostly completely in my large family no matter what we smoked or ate. But a nice little "rock" formed in the RCA opening. Be PROACTIVE!!! I'm 42 years out and most people encounter this between10-15-20 at most about years out. Please be safe!!!!! Michelle

This is important as I am 42 years out-Michelle...don't know if I put my name on my first email-I'm the 42 yr Hodgkins survivor Stanford treatment at 21 years old . Michelle

On May 05, 2012 8:38 PM Michellemar wrote:

This is important as I am 42 years out-Michelle...don't know if I put my name on my first email-I'm the 42 yr Hodgkins survivor Stanford treatment at 21 years old . Michelle

What are the typs of heart tests ?  and meds ?  I had rads to mantle also,....1985.

Hi i an a 27 years Hogkin's diease and had mantle radiation. and 2010 got thyroid cancer and 2011 breast cancer and am very worried what else will happen. can you or anyone is having the same problems from having the same side effects from the radiation.

Liz

On Sep 24, 2006 12:00 AM Ladyfmn wrote:

I just read your request to find other long term Hodgkin Survivors. I am a 19 year survivor of Hodgkins. My original cancers (together) were Hodgkins Stage IIA and thyroid. Since then, I have had basal cell skin cancer, breast cancer, lung cancer and vulvar cancer. But, all of those were caught in early stages and honestly, if you saw me, you would be surprised I have ever been sick. My 82 year old mother says I'm the healthiest looking sick person she's ever seen. There are many long term side effects including heart issues, neuropathy, asthma & GERD. You are welcome to email me directly for more information. I have found a great source for long term Hodgkin Surivors you can contact, just let me know. You are not alone!!!

Hi I am a  Hodgkin survivor 1985 and would like to talk to others.

Thanx for the update.  You have listed some of the issues that I have also had to deal with since that time.  I just recently finished a stay in the hospital for lung issue, so it seems you have already hti some of the bumps I might be facing.

 

Thanx

Radiation damage seems to be taking it's toll on all of us.  My treatment was similar to yours.  I have since been treated for colon cancer, heart valve stenosis, kidney damage and a persistent lung problem.  i am working with the Suvivors  program at Dana farber to monitor my health and get the early diagnosis and reatment for these issues as the present.

On May 07, 2012 12:22 AM lizzy4e wrote:

Hi i an a 27 years Hogkin's diease and had mantle radiation. and 2010 got thyroid cancer and 2011 breast cancer and am very worried what else will happen. can you or anyone is having the same problems from having the same side effects from the radiation.

Liz

Had rads. in mantle too, 1985 start. Are you ok now after the 2 other cancers ? Also had NHL years later. Feel fine now.