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

On May 11, 2012 2:43 AM cathymom wrote:

On May 10, 2012 3:01 PM wheats63 wrote:

On May 09, 2012 5:48 PM cathymom wrote:

On May 09, 2012 3:34 PM wheats63 wrote:

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.

Hi Liz and Wheat63?,

I have been learning SO much lately about the "long term effects" of mantle radiation for Hodgkins disease(I'm a 31 year survivor,1980). There are doctors out there called "Late Effects Specialists", but I have yet to find one in my area. Anyway, mantle radiation has damaged my esophagus, aortic heart valve(I have a mechanical one), lungs, neck and shoulder muscles and ribs. Just think about all the organs that were "in the way" of the radiation and there is a good chance they have been damaged.

To answer your question, Wheat, an Echo cardiogram will show if your heart valves are working correctly and have not been damaged by the radiation. I had open heart surgery 4 years ago because my aortic valve was damaged by the radiation. I was only 41 years old! So, I would recommend(in my professional opinion,ha!) that all mantle radiation survivors, especially from the last century, get Echos, often.    -Cathy

Thank you for heart info. and follow up ideas. Did you only have cancer once ? I had 3 times. Where were you treated ? I was just outside nyc.

Hi Wheat,

I'm glad I could give you some useful info. I have had cancer only once. It seems that everyone else has had it more than once, so I am anxious about getting it again. I can't believe you had it 3 times! Wow! You are my new hero.    I was treated in Greenville, S.C. in 1980. I now live in the Atlanta area.   -Cathy

You have the right message! Heart damage, so true. Survivors by way of radiation, get your hearts checked, protect what heart musels you still have! It's part of your tasks to survive and keep smiling! Enjoy.

On May 23, 2012 12:03 PM wheats63 wrote:

On May 22, 2012 1:59 AM heartxplant wrote:

Hi and congrats on your "New" 20 Years! I am a 52 YO male medical professional who had Hodgkins when I was 17 in 1977. I am at 34 years next month! I had Stage 2A Nodular Sclerosis (neck and mediastinum) treated only with RT. No laparotomy or splenectomy. They did do para-aortic and spleen RT after Mantle Cobalt (in lieu of a Lap and Splenectomy). I have been blessed with many years of good health. My Thyroid has been out of commission for about 20 years. Rising TSH and chock full of nodules...I elected to suppress the Thyroid with Synthroid rather than have it removed. Nobody would guarantee me 100% risk free...so I decided to suppress the gland and nodules with Synthroid (especially since I would have to take Synthroid anyway if I had the gland removed). Was doing fine for many more years.

I've been taking Aspirin since I was 40. One baby when I hit 40, 2 baby since 50. No CAD yet! I did hear a heart mumur in 2000, discovered I had Aortic Stenosis...immediately went on a Statin and Beta Blocker to retard the progression. Worked well...Still no AVR yet...but getting close (3-5 years...hopefully). The longer I wait without getting medically worse, the better the valves coming out. (I currently work as a PA in Cardiothoracic Surgery at the Mayo Clinic...so I'm up on the lastest and greatest). Stress Tests, labs are always normal. In 2006, I developed Heart Block (from scar tissue in the conductive tissue of the heart) and required a Pacemaker (big deal!). Life keeps sending wrenches my way, and I keep kicking their asses. In my 25 years in the medical arena, I've seen may young people die from terminal Hodgkins and said to myself..."why wasn't that me??"

I keep up with everything, enjoy life and realize that if I die tomorrow, I got an extra 34 years of life..to raise a beautiful family, touch many lives on and off the job, and give something back. 

Stay strong, live healthy, do good things and conquer those wrenches as they come !

God Bless,

Mike

Hey Mike,...Wow,..great knowledge of the heart.  I am on benicar, synthroid and aciphex now. Is baby aspirin good idea ? Wonder if another pill is a good idea. What are the names of the 2 heart pills you take ?  What heart tests should I have ? scott

Hi, have an Echo Cardiogram, now! Get a base line of how the heart is working in as many ways you can, now. Enjoy.

On May 23, 2012 12:41 PM heartxplant wrote:

On May 23, 2012 12:03 PM wheats63 wrote:

On May 22, 2012 1:59 AM heartxplant wrote:

Hi and congrats on your "New" 20 Years! I am a 52 YO male medical professional who had Hodgkins when I was 17 in 1977. I am at 34 years next month! I had Stage 2A Nodular Sclerosis (neck and mediastinum) treated only with RT. No laparotomy or splenectomy. They did do para-aortic and spleen RT after Mantle Cobalt (in lieu of a Lap and Splenectomy). I have been blessed with many years of good health. My Thyroid has been out of commission for about 20 years. Rising TSH and chock full of nodules...I elected to suppress the Thyroid with Synthroid rather than have it removed. Nobody would guarantee me 100% risk free...so I decided to suppress the gland and nodules with Synthroid (especially since I would have to take Synthroid anyway if I had the gland removed). Was doing fine for many more years.

I've been taking Aspirin since I was 40. One baby when I hit 40, 2 baby since 50. No CAD yet! I did hear a heart mumur in 2000, discovered I had Aortic Stenosis...immediately went on a Statin and Beta Blocker to retard the progression. Worked well...Still no AVR yet...but getting close (3-5 years...hopefully). The longer I wait without getting medically worse, the better the valves coming out. (I currently work as a PA in Cardiothoracic Surgery at the Mayo Clinic...so I'm up on the lastest and greatest). Stress Tests, labs are always normal. In 2006, I developed Heart Block (from scar tissue in the conductive tissue of the heart) and required a Pacemaker (big deal!). Life keeps sending wrenches my way, and I keep kicking their asses. In my 25 years in the medical arena, I've seen may young people die from terminal Hodgkins and said to myself..."why wasn't that me??"

I keep up with everything, enjoy life and realize that if I die tomorrow, I got an extra 34 years of life..to raise a beautiful family, touch many lives on and off the job, and give something back. 

Stay strong, live healthy, do good things and conquer those wrenches as they come !

God Bless,

Mike

Hey Mike,...Wow,..great knowledge of the heart.  I am on benicar, synthroid and aciphex now. Is baby aspirin good idea ? Wonder if another pill is a good idea. What are the names of the 2 heart pills you take ?  What heart tests should I have ? scott

Hi Scott,

I'd have an Echo, Exercise Stress and even a Calcium Scoring CT scan (no contrast). Depending on your insurance (assuming you have some), I'd prioritize with the Echo first, then the stress. I'm also assuming you had RT of the Chest. 

As far as me, after the PPM was put in, I became very susceptible to Atrial Fib. I think it's where they placed the Atrial Wire...its causing irritation in the Atrial. I never had AF before the PPM. I was on Toprol XL for years for the Aortic Stenosis. Since I've been on Rythmol in addition to the Toprol, no more AF (supressed).

I've done a lot of premature CABGs on previous RT of the chest pts. Pt's in the 30s & 40s with no strong hx of CAD in family. Aspirin is a MUST if you don't have a history of GI Bleeds. 1 baby at 40, 2 at 50, and I'll be on 3 at 60 (if I make it...lol)

I had a stress test for a base line of heart and was ok.   Is an echo a different test ?

Hi

I am a 35 year survivor of Hodgkins, stage IA.  I only had radiation.  As others, I have had all the ususal side effects, side effects that NO dr warned me of....I had to have my thyroid removed (pre-cancer cells), lung damage, 2 stents, skin cancer.  I have always been an athlete and even after cancer I competed for the US in cycling in 1983.  However, I struggle now with shortness of breath and general difficulty in improving fitness compared to others of my age.  Luckily, in my area (Houston), Texas Children's Hospital has a long term survivors clinic that accepts anyone and I am going to check it out!  I have GREAT drs here in Houston--it just seems like they aren't fully on board with all of our long-term effects.  Oh, and a few years ago, I had a small intesting block due to scar tissue from my spleenectomy = man, was that awful!!!

I just wish I could have better heart function since I still cycle and run a great deal...anyone else?

Julie

I have a full work-up every year....Echo, utlrasound, and nuclear stress test...

On Jun 15, 2012 10:41 PM jdonati wrote:

Hi

I am a 35 year survivor of Hodgkins, stage IA.  I only had radiation.  As others, I have had all the ususal side effects, side effects that NO dr warned me of....I had to have my thyroid removed (pre-cancer cells), lung damage, 2 stents, skin cancer.  I have always been an athlete and even after cancer I competed for the US in cycling in 1983.  However, I struggle now with shortness of breath and general difficulty in improving fitness compared to others of my age.  Luckily, in my area (Houston), Texas Children's Hospital has a long term survivors clinic that accepts anyone and I am going to check it out!  I have GREAT drs here in Houston--it just seems like they aren't fully on board with all of our long-term effects.  Oh, and a few years ago, I had a small intesting block due to scar tissue from my spleenectomy = man, was that awful!!!

I just wish I could have better heart function since I still cycle and run a great deal...anyone else?

Julie

Good info.. I am 20 years out w/ rads. How did you know heart stents were needed ?

Me too!

Just a fluke--I was getting my thyroid checked (it had to be removed a few years later) and the doc heart a rumor...he recommended me to a cardiologist and it went from there...my brachi-radialos ws 80% blocked and I had NO clue!

I'll assume your Doc heard a mumur and not "heart a rumor" lol

You don't get mumurs from blocked brachioradialis. That is a muscle in your forearm. One of your veins in the upper extremity may have been blocked, but you still do not get a mumur from it. My guess is if you received RT, you most probably have Aortic Stenosis or Mitral Regurg.

Thanks for the correction!!!  Yes, it was not the arm artery that he heard--it was some mitral valve regurge.  But when the cardiologist explored, he found the blockage....It stinks b/c it followed the next year with a blockage right at the carotid junction going up to my neck.  Since then, no further stents, but I find breathlessness a problem....I go for my yearly check up in a few weeks---I am still active--ride my bike, run, and do a bootcamp everyday but I just am not like I wish I was!