Hodgkins Survivor , 19 years and counting - Lymphomas Message Board

maxietoonses · 08-28-2008, 08:32 PM

Hello everyone, I am new to health boards and wish this resource was availl when I recieving treatment. I wonder if there are other survivors who are experiencing some of the long term effects of the Chemo. I hac MOPP/ABVD
regime. I was in stage 4 with tumors in lining of heart and lungs. By the grace of God I am still alive. However I have started having various health problems and I suspect are dt Chemo. I have just developed tachycardia with left atrial enlargement, my pituitary gland is not functioning properly, constant ringing in my ears and have had to have extensive dental work due to the radiation. I feel blessed and look at my life as though I have lived 19 years longer than I should have. I am just curious if there are other long term survivors who have experienced long term effects of chemo and radiation. For those who are recently diagnosed I hope the fact that my survival gives you hope and although I am experiencing some health problems, I have been very healthy up untill the last 2 years. I am 39 years old so I would imagine that the cure rates are even greater now with milder chemo treatment Having Hodgkins and surviving gave me a brand new respect for life and inspired me to live each day as it was my last. Having this disease also caused me to consider life after death, as a result I have experienced a fulfilling life as a Christian. Hope I encourage some and if anyone else is experiencing problems because of chemo or radiation please give me info on what I may have to be aware of. Thanks and I sincerely have compassion for all who suffer through cancer

singer78 · 08-28-2008, 09:30 PM

Hi and welcome to the Board.

I, too, had Hodgkin's (nodular-something 2A) and am in remission, as of Dec. '07.
I had ABVD (8 treatments) and 20 rad's. Finished in Nov. '07.

I had no idea, the repercussions that would follow...and, you're right. I would imagine they've perfected the treatment throughout the years. I heard that it basically was a "death sentence" if you got this, back in the 70's. Thankfully, we're reaping the benefits of better treatment.

You're young....I'm older than you (in my 50's...hate to admit it) and it has been rough.
This first year, after treatment, I've experienced achiness to no end, breathing problems (pneumonitis), stomach ulcers, acid reflux, gallstones, and anemia. Other than that---I'm "good to go."
When you compare it to the alternative, --- I suppose it's not that bad. At least we're both still here to complain.

I'm sorry you're experiencing some problems. What's your diagnosis? Is it reversible?
Do your doctors admit it's from chemo? Sorry...don't mean to ask too many questions....just curious.

I, too, feel like this disease opened my eyes. I don't take anything or anyone for granted. I feel blessed every morning I wake up. I, too, have also become very spiritual (I was before...just moreso) and thank my Higher Power for "opening my eyes."
Life is beautiful. We have to always look for the rainbow.

Yes, this forum was wonderful for me, going through treatment, and even now.
I've made many friends on here (some have come & gone.....) who have been my "rock."
I'll forever be eternally grateful for whomever had this site in their vision.
I know it's been a wonderful source of support for many people.

Anyway, it's nice to meet you & God Bless.

Singer

lymphpre · 08-29-2008, 05:21 AM

Thanks for posting. It is really good to hear from long-term survivors. I have been living with HD for 15 years now, but unfortunately have had two relapses in that time. I have just had R-ABVD as salvage chemo, and am struggling to bounce back at the moment.

From my earlier chemo, which was ClVPP, a MOPP variant, I made a good recovery, but have had some ongoing problems. My digestive system never recovered fully, and I have endured IBS-type symptoms ever since. I have also had ongoing problems with fissures at the output end of the system - they can really hurt. For years now, my drs. have predicted thyroid problems, which have thankfully not emerged. Blood tests show thyroid function to be borderline at times, but so far it has always bounced back again. I do get episodes of tachycardia, but that is a recent thing, which I attribute to the R-ABVD. That seems to be settling down now though. This regime has hit me hard, but it's my second lot of chemo, and I'm 11 years older than the first time. Too early to say what the long-term effects will be.

I don't think the treament for HD has actually changed that much over the years. Radiation therapy is still standard for early stage, and bulky disease. ABVD is still the standard chemo, with the possible addition of rituximab. Now they inject people with something to stimulate white blood cell production, so infections are less of a problem. The really important factor is early detection and diagnosis, leading to earlier treatment.

Nice of you say hello, and I hope you continue to post on this forum.

REDD998 · 08-30-2008, 10:50 AM

Congratulations on the 19 year's.My Dad had Hodgkin's in or around 1990 but he would keep getting relapses every 6 month's or so for 5 years.Im 38 and I worried a little about me possibly getting Hodgkin's disease at some point in my life.But at age 30 I was blessed with stage 1 testicular cancer which didn't spread, and I don't worry about it too much anymore.I think my Dad was in the later stages of Hodgkins disease but he still lived almost 6 year's while being treated numerous times with Chemo.I talk to all the Doctors and they all say along with Testicular cancer Hodgkins is very curable.Strange thing is that my Dad was hardly ever sick when going through Hodgkins disease.You seemed to get it at a much earlier stage and you will beat it for good.

bran29 · 09-22-2008, 10:06 AM

Hello, I am a 21 year survivor of Hodgkins, I was so excited to find someone like me!! I Had stage 4, with a tumor in my chest cavity. I had Chemo and Radiation, I was 11 years old when diagnosed. I was fairly healthy for about 10years after my treatment, However the last 11 years have been rough ones. I have had a complete hysterectomy, Kidney stone disease, IC, I have recently learned that I have a faulty Valve in my heart, I have had nodules removed from my thyroid twice. I am home from work today due to illness, I have had alot of rough days latley. I get so aggerveted going to the doctor, everything is due to the chemo and radiation. I'm sorry for complaining so much, I am very thankfull for the life that I do have, and everyone going through this right now, Keep your head up...............