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

533 Posts | Page(s): Prev 12...50 51 52 53 54  Next 

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

by steveb50 on Fri Jun 23, 2017 11:11 PM

Quote | Reply

Hi Karen,

My husband is a 32 yr HL survivor. He has seen a couple of docs through the Farber survivor clinic  it's good to visit at least once to give you information on potential issues. Steve has seen Dr. Nohria cardiologist and Jean Mulder endocrinologist there 

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

by kellya. on Mon Aug 07, 2017 08:04 AM

Quote | Reply

these posts seem really old but I want to ask more on the reduced lung function. I am 44 and had hodgkins when I was 17. I have terrible trouble with my lungs.  I had only radiation.

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

by DLynnB on Mon Aug 07, 2017 08:12 AM

Quote | Reply
Hi Kellya, ask to join the Hodgkin's Survivor's group, 1960s to 1990s on Facebook. There is also one called Living Life After Hodgkin's. There are lots of us and great help. Hope this helps. DLynnB

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

by bgdyer on Mon Aug 07, 2017 02:51 PM

Quote | Reply

Kellya,

Can you ask your doctor to request a pulminary function test? I was having them done every five years, and had a few that were relatively normal, though I felt like my lung function could have been a lot better.  I now have lung cancer (diagnosied in 2017, had radiation for Hodgkins at 14 in 1972, 45 years ago).  The doctor ordered another pulminary function test before my diagnosis and the results were down significantly.   

Reduced lung function could genuinely be the result of tissue damage from radiation and not lung cancer or other serious lung disease.  Over the years, I've seen many posts from Hodgkins patients who had mantle radiation, and lung problems that were benign.  I haven't seen that many who (like me) actually developed lung cancer.

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

by lorileigh on Mon Aug 07, 2017 03:05 PM

Quote | Reply

Hi, I had hodgkins at 21 and am now 57 (36 year survivor!); I have lots of lung problems and cannot walk as fast as my 77 yo mother.  I have asthma, but most importantly COPD stage II.  Due to radiation; I never had chemo either.  I live a full life and most people are surprised that I am a cancer survivor.  I have to use a handicapped sticker when I park at malls and Wal-marts and hospitals.  I can't walk far at alll if it is cold, humid, or windy.  But I am so happy to still be alive; I can even dance sometimes, but not for more than one song.  I've just learned to live with walking slow and exercise requires a lot of breaks to get my breath.

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

by since1972 on Mon Aug 07, 2017 08:58 PM

Quote | Reply

Bgdyer-

I'm sorry to hear of your lung ca diagnosis. Like you, I was diagnosed in 1972- 45 years ago tomorrow! I was 15.  I had a LOT of mantle radiation, and chemo (MOPP). Lung function is definitely an issue, and I do have PFTs once a year. I've had some benign lesions removed from my lungs that appear to be scar tissue.

Just want you to know I'm thinking of you. From one (45 year!) survivor to another- take care. Wishing you the best.

Erin

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

by bgdyer on Mon Aug 07, 2017 11:06 PM

Quote | Reply

Erin,

Thanks!  Do you still have any records of how much radiation they gave you?  I thought I had them once but now cannot find them for the life of me (and all providers say they have discarded them, even when I go in person).  I think it was probably 40 Gy, or at least 30-40 Gy.  

Whatever happens for me (I'm stage 4 LC), I'm very grateful for these 45 wonderful years.  When I was diagnosed, my parents looked at a decade-old medical manual and read that everyone died.  They were very relieved when the doctors told them they could radiate.  So despite the enormous dosage we both got, we made it this far.  And did you also escape breast cancer?  (Not me, but it was early)

Beverly

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

by DLynnB on Tue Aug 08, 2017 02:19 AM

Quote | Reply
I just received my records from the National Patient Archives in St. Louis. My husband was in AF at time of my Hodgkin's in 1976. I had 4025 rads from July 5--22 to upper thorax--23 treatments. Then I had radiation to aortic and parasplenic nodes--3900rads. Hope this helps. DLynnB

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

by sue_skier on Mon Aug 28, 2017 10:36 PM

Quote | Reply

Hi,

I am a 38 year survivor of Hodgkins Disease stage 3.  I had multiple surgeries, radiation and chemo for 3.5 years due to a constant low blood count.  I have had my thyroid removed (small malignant tumor) and basal cell carcinoma.  My main issues have been shortness of breath and now preparing to have my third major spine surgery due to the radiation of my spine during treatment.  I am so happy that protocals have changed and radiation therapy is more targeted.  Best of all, my future husband started dating me while I was going through chemo.  We got married six months after treatment and we are still adventuring married 35 years this last March.

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

by lorileigh on Mon Aug 28, 2017 11:30 PM

Quote | Reply

That is fantastic news that you are a 38 year Survivor and also very inspirational for others I know a young autistic man 24 years old who was just diagnosed with stage 4 Hodgkin's Disease he lives in Wilmington North Carolina.   I would love to hear from anyone who was diagnosed with stage-4 and how you are doing

533 Posts | Page(s): Prev 12...50 51 52 53 54  Next 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.