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

Hi , I had hodgkins stage 2a, 21 years ago. I was treated with small chem but mainly mantle radiotheraphy. About 9 months later I had l'hermittes sign (tingle in legs when flexing neck). I was told this was common and would go which it did. 3 years ago I had slight numbness in arm which went away. Now I have weakness in one leg and suffer from fatigue. I have had an MRI and have been told that I have radiation myelopathy in my neck as a result of the radiotheraphy.  Has anyone else heard of this?

Moyna

Hi , I had hodgkins stage 2a, 21 years ago. I was treated with small chem but mainly mantle radiotheraphy. About 9 months later I had l'hermittes sign (tingle in legs when flexing neck). I was told this was common and would go which it did. 3 years ago I had slight numbness in arm which went away. Now I have weakness in one leg and suffer from fatigue. I have had an MRI and have been told that I have radiation myelopathy in my neck as a result of the radiotheraphy.  Has anyone else heard of this?

Moyna

I too am a 20+ year survivor of Hodgkins.  I was initially diagnosed in 1990 at the age of 24.  I have had 2 reoccurances.  One in 1993 which was treated with 1 year of chemo and the other in 1998 was treated with a stem cell transplant and radical chemo.  My initial treatement in 1990 was raditation. 

My body is showing major wear though and some days are tough to get up and get on with life.  I have a 7 year old son who i have to keep up with and some days my body aches so much all I want to do is cry.  I have severe muscular pain, chest palpatations, difficulty swallowing and am severly overweight.  I can go on and on with my problems physically but everyone tells me to be thankful to be alive.  I am but some times it just isn' easy. 

I thought i was the only one out there it is nice to hear of another long term survivor.

I have myleopathy but not localized to the neck.  Mine is all over my body.  My symptoms are muscular pain mainly.  If i over do it physically one day it takes me two days to recover.  my myleopathy has never been conclusively proven since testing would have been excruciating for me.  I think some times these professionals grasp at straws to give us the answers.  There is nothing that they can do for us so lets send them for testing.  I wish there was a magical treatment for the way I feel some days.

i too am a 20+ survivor.  I have issues that are numerous.  Chronic fatigue, hypothyroidism, tachycardia, GERD, overweight, depression, heart disease ( although not diagnosed yet).

I was diagnosed and treated in 1970.  I don't mean to brag, but I am now 40+ years post radiation therapy.  Most cancer treatment was largely experimental in the '70's and I have been one of the very lucky ones.  STill have reasons to be concerned, but am generally in excellent health.  I'm a lab rat for the Dana Farber and Brigham + Women's oncologists, so I have been mapped and studied like a highway.  There's good points and bad points to that.  I strongly believe that a positive attitude and a desire to live life is key to living with this.

Good on mate!  Dennis here in the Land of Oz. 30 year survivor of late stage Hodgkins.  Did the radiation, did MOPP and did the stagging. I was 18  (1981) when it was all finished.  Its good to be alive!!  I found out later that many people from many different churches were  praying  for my healing and conversion and that is what happened.  I moved from the States to Melbourne 16 years ago to work with a family of churches in church planting and youth work.  Yup get the BCC's and yes partly due to my stupidity as well.  I get upper respiratory things easy but not much of a prob.  My neck and shoulders and upper back have lost tissue over the years but the Chiro keeps me fixed up.   Have had bypass, a fast heart rate and been told I'll need a valve replaced someday. Can’t make babies but working with the youth has filled that void.  I get cold in the winter and annoy my wife turning the electric blanket on high!  Every day is a bonus from above; I’m determined to make the most of it for Him!!

Hey Sammie1, congratulations on your survivorship.  I am a 39yr. survivor of Hodgkins Disease.  For me, it was the best day of my life... the Med. Tech. who first took my blood, has been my wife for over 34yrs.!!.  Love to compare some notes.  Thanks,  Mitch

On Feb 28, 2012 9:11 AM dennis63 wrote:

Good on mate!  Dennis here in the Land of Oz. 30 year survivor of late stage Hodgkins.  Did the radiation, did MOPP and did the stagging. I was 18  (1981) when it was all finished.  Its good to be alive!!  I found out later that many people from many different churches were  praying  for my healing and conversion and that is what happened.  I moved from the States to Melbourne 16 years ago to work with a family of churches in church planting and youth work.  Yup get the BCC's and yes partly due to my stupidity as well.  I get upper respiratory things easy but not much of a prob.  My neck and shoulders and upper back have lost tissue over the years but the Chiro keeps me fixed up.   Have had bypass, a fast heart rate and been told I'll need a valve replaced someday. Can’t make babies but working with the youth has filled that void.  I get cold in the winter and annoy my wife turning the electric blanket on high!  Every day is a bonus from above; I’m determined to make the most of it for Him!!

We are the same age,...1963 too. Had H.D. in 1985 and 1992,...then NHL in 2008. You had just once ?  Just take benicar for B.P., and Aciphex for heartburn, Synthroid needed too.  Feel fine, Thank God. 

I am very happy to have found this thread. The day before my 60th birthday, I'll be 25 years cancer free. I had no radiation, only chemo — diagnosed (in 1986) with Stage IIIB Hodgkins, too spread out for radiation.

I have lived a challanging but awesome life. I feel on top of the world but I'm humbly trying not to forget the lesson that cancer taught me. I am physically fit and mentally active.

I cannot express enough gratitude for having had a second chance.