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Mantle Radiation

wdcarver
Posts: 1
Joined: May 2006

I was diagnosed with Hogkins Disease, Stage IIB in 1981. Received MOPP chemo and mantle radiation. There has been no recurrence of the Hodgkins. I am now having problems with shortness of breath and chronic coughing along with headaches. I have had shortness of breath, exercise induced since I completed treatment, but now it is much worse. I have been to a pulmonoligist and being treated for exercise induced asthma, but does not seem to work. I have recently seen a cardiologist and have a mild mitral valve regurgitation. Also just had a cardiac catheritization. It should no problems with the heart and the major vessels, good news. But still have unexplained shortness of breath. I have read alot of information on late symptoms from mantle radiation, but not much on how people are being treated for those syptoms.

Drs seem to shrug off the problems I am having.

What are some of your experienciences out there?

dbekman
Posts: 2
Joined: Jun 2006

wdcarver: If any doctor trys to minimize your symptoms my advice would be to find a new doctor.

I was diagnosed with hodgkins in 1987 and rec'd only mantle radiation therapy. I recently I began experiencing the dry chronic cough, shortness of breath, and extreme fatigue,which has turned out to be congestive heart failure which is now controlled with medication. I'm 43 initially my cardiologist blew me off stating I was too young to have heart problems. I changed docs and he stated that the CHF is linked to the inflamation of the heart during radition treatment. Did they look at the ejection fraction during your heart catheterization? Normal is 60-75%.
Two weeks ago I found a large lump in my breast and am waiting for the pathology to see if I have developed a new cancer. Also, my oncologist has been watching my blood levels for about the last two years for radiation induced leukemia.

Good luck to you!!!!

lindazame
Posts: 46
Joined: Jan 2002

Hi wdcarver,
There are more and more doctors who are seeing long term survivors. I've found a lot of good help at Stanford Hospital in California. I also run a discussion group for long term survivors. Lots of experience with SOB and related problems with mantle radiation.
ACOR.org hosts my group. click on mailing lists L for LTsurvivors.
Hope to hear from you.
Linda Zame

cinlou
Posts: 1
Joined: Sep 2006

I just started looking for additional information for my sister. She is having her 2nd heart valve replaced this month. About 2 years ago she had the Aortic valve replaced and now the Mitral valve replaced. She had Hodkins in the late 1970's. She had a procedure last week called a TEE (Transesophageal echocardiogram) which detected the bad Mitral valve. The cardiac catherization did not show anything but the TEE did. She has been treated for chronic asthma since before her first heart surgery. She has also had part of her thyroid removed and recently a total masectomy.

dbekman
Posts: 2
Joined: Jun 2006

I had mantle radiation for Hodgkins in 1987. Now almost 20 years later I am experiancing the same symptoms as you, shortness of breath, chronic dry cough. After a cardiac cath I was diagnosed with mild congestive heart failure and am now on a beta blocker and blood pressure meds. With the CHF your blood pressure should not be over 130/80. I would suggest to your cardiologist to look at the ejection fraction (the percentage of blood that is pumped with each heart beat). I still have difficulty with energy and some shortness of breath depending on the activity but the cough is gone. (Dr's had diagnosed me as being asthmatic also.) Right after the CHF was diagnosed I also began having problems swollowing and was diagnosed with Candida of the esophogus. Then immediately after that I was diagnosed with breast cancer which the doctors believe is a direct result of the radiation. I had a mammogram in 12/05 that did not detect any abnormality. In July 06 I had a bilateral mastectomy. The other complication that can and does occur from radiation is an increased risk of leukemia.
If you are not getting satisfaction from your doctors, I highly suggest getting another physician. Your life may depend on it.

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