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

On May 07, 2012 12:26 AM lizzy4e wrote:

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.

Real similiar,...me too fine now and active. What is the info. on Hodgkins ?  A website like this ?

On May 07, 2012 2:48 PM RickieC wrote:

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

Yes,...I go back to 1985, am ok now,...get a solid primary doctor and check ups annually. Colonscopy is important if rads were in abdomen.

On May 07, 2012 2:51 PM RickieC wrote:

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.

What year did H. D. begin ?  I go back to 1985 and am 48 now. How do you know about the symptoms for heart and kidney problems ?   Did you need surgery ?

On Sep 08, 2011 4:08 PM RickieC wrote:

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.

Wow,...started in 1970, and you are fine today,...you win !  What check ups do you recomend ?   I do carotid neck check, heart and colonscopy when needed. I had it 3 times,...1985, 1992 and 2008,...all ok now. Any other check ups to get ?

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

Lizzie & Wheat. 

I am finding that it NOT uncommon for radiation survivors to have heart and lung issues.  If there was anything done to the lower mantle, frequent colonoscopies are in order.  I, too, have had issues with my esophogus (strictures), gastro-intestinal system (colon cancer) cardiac ( valve stenosis),  Kidneys (aortic stenosis), and lungs (pleural effusions, infections) and skin (basal cell lesions).

Again, I am working with the specialists at the Dana Farber, who seem to have seen it all before and are way out in front of it for me.

No surgery for the carotid or heart issues (YET).  Two surgeries for lung issues, and lots of medications for both issues and others - Thyroid, gastro, renal, and more.

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.

On May 09, 2012 6:43 PM RickieC wrote:

Lizzie & Wheat. 

I am finding that it NOT uncommon for radiation survivors to have heart and lung issues.  If there was anything done to the lower mantle, frequent colonoscopies are in order.  I, too, have had issues with my esophogus (strictures), gastro-intestinal system (colon cancer) cardiac ( valve stenosis),  Kidneys (aortic stenosis), and lungs (pleural effusions, infections) and skin (basal cell lesions).

Again, I am working with the specialists at the Dana Farber, who seem to have seen it all before and are way out in front of it for me.

Hi Rickie,

   Do your doctors at Dana Farber know of any late effects specialists in the Atlanta area? I could use some guidance.

Thanks!   Cathy(31 year survivor, 1980)

I will ask when I am in there tomorrow.