My Story - Long Term Survivor Issues

I am a 31 year survivor of 1A stage Hodkins Disease.  I received radiation to my entire torso which I now know was not commonly done when I only had evidence in my neck.  The disease was discovered in a pre-op chest xray performed before gallbladder surgery.  I had a relapse four years later when I was pregnant with my son and was then treated with MOPP chemo.  I was told I would never have children and have a daughter born 10 months post radiation along with my son.  Very grateful for them!  My long term survivor issues include radiation induced myopathy to my neck and spine.  I have very little muscle left in my neck and hence some of my shoulder muscles have increased in mass trying to hold my melon up.  Pain medication along with a tens unit are controlling it enough for me to currently work full time but I have difficulty accomplishing my housework (good excuse??? hee hee).  I have narrowing of my esophagus and moderate reflux.  I am so grateful for the 31 years of survival but find the long term survivor issues difficult to deal with at only 53 years old.  I have a grandmother who is 95 and I swear she has more energy than I do!

Hello-

I am a senior at the University of Wyoming, and I am doing a project on Hodgkin's for an epidemiology class. I have found a great deal of information about the disease, but, surprisingly, I have not found anything about what the disease does to the body aside from the originating pathology. I assume there must be some affect on the immune system, but so far I have been unsuccessful in finding information pertinent to this component of Hodgkins.  Since you are a long term survivor, do you have any suggestions to offer that may help me in my search?

God bless and best regards,

Jodi

Hi,

I'm a 32 yr. survivor of H.D.  I've been pretty lucky and haven't had any major problems.  I've had my thyroid removed in recent years due to damage from radiation.  I also have weak muscle mass in my neck area....but it hasn't bothered me....aside from having a skinny neck!

I've suffered from low energy for years.....but found a doctor who has finally gotten my thyroid medication right, treated my exhausted adreanal gland, gotten me on the right hormones, and added immunse system builders.  I'm feeling great right now.  Better than I have in years!

What....if anything....has been done for the narrowing of your esophagus and reflux?

 

On 1/2/2008 Becca12056 wrote:

What....if anything....has been done for the narrowing of your esophagus and reflux?

Hi - I'm another long term Hodgkins survivor (19 years). I had upper and lower radiation, then ABDV chemo 7 years later when it came back. 

I've had on-going issues with reflux and I have something called a Schatzki's ring that makes it difficult for me to swallow food.

For the reflux, I have learned to manage the time and amount that I eat to minimize the problem because I didn't want to have to take drugs for the rest of my life. (I use Gaviscon when I haven't been so careful).

For the ring, I have an upper GI specialist that dialates me every 2 or 3 years, which helps a LOT. It is a simple ambulatory procedure. They also make sure that I'm not developing esophageal cancer which is a secondary cancer for many Hodgkins survivors. 

I would recommend that you find an upper GI specialist and have them check you out.  

 

 

On 10/16/2007 Hutter Ranch wrote:

I am a 31 year survivor of 1A stage Hodkins Disease.  I received radiation to my entire torso which I now know was not commonly done when I only had evidence in my neck.  The disease was discovered in a pre-op chest xray performed before gallbladder surgery.  I had a relapse four years later when I was pregnant with my son and was then treated with MOPP chemo.  I was told I would never have children and have a daughter born 10 months post radiation along with my son.  Very grateful for them!  My long term survivor issues include radiation induced myopathy to my neck and spine.  I have very little muscle left in my neck and hence some of my shoulder muscles have increased in mass trying to hold my melon up.  Pain medication along with a tens unit are controlling it enough for me to currently work full time but I have difficulty accomplishing my housework (good excuse??? hee hee).  I have narrowing of my esophagus and moderate reflux.  I am so grateful for the 31 years of survival but find the long term survivor issues difficult to deal with at only 53 years old.  I have a grandmother who is 95 and I swear she has more energy than I do!

Hi Hutter! After years of research, I am so grateful to finally find people whose long-term symptoms are similar to mine! I had H.D. Stage 2B (never confirmed short of agreeing to a laporatomy) 26 years ago. After mantle radiation plus an extra strong dose in the left brachial plexus area, I managed to slowly recover in spite of a debilitating anemia that prevented me from being fully active (I know what you mean with your grandmother having more energy than you do!) until I finally conquered it some 10 years after treatment. Shortly after, I developed a "frozen shoulder" which an MRI showed was due to lots of scar tissues in the chest area. I then suddently started loosing muscle mass in my left shoulder and, progressively, in my neck and spine. Numerous visits to neurologists and specialists of all sorts have made me feel that I was an "unusual case" and that I should learn to live with this condition. My range of motion in the left arm is extremely limited and, on that side, I look skeletic! However, thanks to regular physical therapy, in particular water therapy, and a strong will to lead a "normal" life, I have learned to cope and nobody around me knows my handicap. I have a very supportive husband and a job I love, but I sometimes worry about not being able to control the radiation damages from progressing further. Has anyone tried other therapies successfully?

I am a stage III Hogkins survior for 27 years now.  I went through MOPP and ABDV and radiation therapy of my stomach and pelvis area.

The MOPP sterilized me, my periods stopped at age 19. 

So far, I have had 1/2 of my thyroid removed.  I have scoliosis of my lower back.  I have moderate bone loss.  I have GERD and ulcerative colitus. 

I also have a big problem with shortness of breath.  I was diagnosed with exercise induced asthma and use 2 inhalers.  My question to you all is are you having the same breathing problems?  It is getting worse every year especially at elevation in the winter.

 

 

 

 

 

On 5/31/2008 sue skier wrote:

I am a stage III Hogkins survior for 27 years now.  I went through MOPP and ABDV and radiation therapy of my stomach and pelvis area.

The MOPP sterilized me, my periods stopped at age 19. 

So far, I have had 1/2 of my thyroid removed.  I have scoliosis of my lower back.  I have moderate bone loss.  I have GERD and ulcerative colitus. 

I also have a big problem with shortness of breath.  I was diagnosed with exercise induced asthma and use 2 inhalers.  My question to you all is are you having the same breathing problems?  It is getting worse every year especially at elevation in the winter.

 

 

 

 

 

Wow, I guess I did not sign up to be notified if anyone replied to my message I left.  I apologize for not getting back to enyone. 

 I have had all different types of breathing tests aobut 5 years ago when I believe I suffered a mild heart attack.  Doctors could find no evidence of heart troubles so tested for breathing problems.  Could not find conclusive evidence of breathing troubles, but I have shortness of breath as such.  I had another heart workup this past month, but again all normal.  Do not know what is going on.  Oh well, I just try to carryon and force myself to do what I can.  I work full time and have chronic pain from myopathy of neck, shoulder and upper back muscles.  Nerve damage also.  

But most of all, thankkful for 33 years of survival!

Kathy at Hutter Ranch 

 

On 2/12/2008 Mimi2 wrote:

 

On 10/16/2007 Hutter Ranch wrote:

I am a 31 year survivor of 1A stage Hodkins Disease.  I received radiation to my entire torso which I now know was not commonly done when I only had evidence in my neck.  The disease was discovered in a pre-op chest xray performed before gallbladder surgery.  I had a relapse four years later when I was pregnant with my son and was then treated with MOPP chemo.  I was told I would never have children and have a daughter born 10 months post radiation along with my son.  Very grateful for them!  My long term survivor issues include radiation induced myopathy to my neck and spine.  I have very little muscle left in my neck and hence some of my shoulder muscles have increased in mass trying to hold my melon up.  Pain medication along with a tens unit are controlling it enough for me to currently work full time but I have difficulty accomplishing my housework (good excuse??? hee hee).  I have narrowing of my esophagus and moderate reflux.  I am so grateful for the 31 years of survival but find the long term survivor issues difficult to deal with at only 53 years old.  I have a grandmother who is 95 and I swear she has more energy than I do!

Hi Hutter! After years of research, I am so grateful to finally find people whose long-term symptoms are similar to mine! I had H.D. Stage 2B (never confirmed short of agreeing to a laporatomy) 26 years ago. After mantle radiation plus an extra strong dose in the left brachial plexus area, I managed to slowly recover in spite of a debilitating anemia that prevented me from being fully active (I know what you mean with your grandmother having more energy than you do!) until I finally conquered it some 10 years after treatment. Shortly after, I developed a "frozen shoulder" which an MRI showed was due to lots of scar tissues in the chest area. I then suddently started loosing muscle mass in my left shoulder and, progressively, in my neck and spine. Numerous visits to neurologists and specialists of all sorts have made me feel that I was an "unusual case" and that I should learn to live with this condition. My range of motion in the left arm is extremely limited and, on that side, I look skeletic! However, thanks to regular physical therapy, in particular water therapy, and a strong will to lead a "normal" life, I have learned to cope and nobody around me knows my handicap. I have a very supportive husband and a job I love, but I sometimes worry about not being able to control the radiation damages from progressing further. Has anyone tried other therapies successfully?

I apologize for not getting back to you sooner, but must have not noticed I was supposed to check the box to recieve a notice when a reply was posted.  I am tempted to go to an accupuncturist for the chronic pain in my shoulders.  I have gotten physical therapy, but all they want me to do is stretch the muscles and all that does is cause a huge, long lasting pain flareup that takes weeks to calm down.  I had started an exercise program at the local fitness center and was doing great until I started to have chest pain and shortness of breath.  Docs could find nothing wrong, but have lost about half of my wind and am having difficulties on the treadmill.  Back to square one it seems!

 Kathy at the Hutter Ranch