Master of Hodgkin's

All,

I had Hodgkni's Lymphoma from 2001 thru my second stem cell transplant Oct 2005. This October will be my 5-year remission anniversary.
I've had every type of chemo regimen, some radiation and as stated, 2 stem cell transplants.
If you have any questions, please ask.
m

mgiffordhome-
Welcome to the Hodgkin's boards, we more than welcome your extensive treatment experience! And congratulations on approaching your 5 year remission anniversary!

What combination chemo regimens did you have, and which were successful for you and which were not?

And what kind of stem cell transplants do you undergo-- and how were your experiences?

Ross

hmmm..

i had ABVD, MOPP, and other combinations which i can't think of at the moment.

my brother's were both matches for stem cell transplants. The first brother gave stem cells and I received them May 2003 after having the worst chemo to kill my entire immune system. I had to stay in the hospital for a month all the while I felt awful and couldn't leave my room. Even after I went home, I was unable to leave my house for months and months. His stem cells were to close a match to mine so they did not work. My other brother gave his and I received them Oct 2005. I got a small case of graph vs. host disease which was good and seemed to do the job. In most of the cases, Hodgkin's is cured with one round of ABVD, but in my case the disease was very fierce and required much more work. My doctor, Dennis Cooper at Yale is amazing and is one of the top doctors for Hodgkin's, if anyone is looking for someone good. Although, he won't even consider any patient who hasn't had ABVD first.

The pre-transplant chemo regimens for Hodgkin's include ASHAP, BEAM, mini-BEAM and CVP, maybe you received one of those. You got hit with graft versus host too, wow.

At any rate, good job- you've been through a lot and your experience is highly valued around here.

Ross

Hey M,

I'm glad to hear that you have 5 years in remission. What stage were you originally diangosed? Phillip

Congrats on your 5 year mark. You have truly been through a lot, hugs from MN. I will be getting a stem cell transplant w/in the next month and a half most likely. They are using my own stem cells though...I actually just posted about this today. I know I have to stay at Mayo Clinic for 6 weeks through the whole process....do you just still feel really tired after it all? sick? or just everything?

Hey, congratulations on your 5 year mark. I finished chemo (ABVD) and radiation treatments last spring after having Stage II with a large (2 litre) tumor in my chest.

I was feelling really good over the past 4 months until this past week. I'm starting to get that 'run-down' feeling along and having cold sweats at night.

I'm scheduled for my next visit in October, however, I may go in earlier because of these symptoms. Do you recommend I go in earlier for a checkup?

Thanks and best wishes to all!
Bill in Dayton

Bill-
I don’t see the harm in going in early if only to be examined. The last thing you want to think about is any potential recurrence, but either it’s happening or it’s not, and wouldn’t it be better to find out sooner rather than later? Either you spend the next two months 1) worrying about what you might learn, or 2) not at all worried because there’s nothing to be worried about.

Ross

Hi, my name is Deborah. I was recently diagnosed with HL stage 4 - recurrent. very large tumors present >10cm. I started ABVD last week. This week I'm experiencing constant pain. The last time around w/HL, I was at 4B, night sweats, weight loss..... but the pain was not as severe.

Does anyone else experience severe pain and how do you handle it?

Bill please, get a check-up ASAP. You cannot wait until October -

Deborah

Deborah-
'last time around', when was the last time around?

And did you have the kind of tumor bulk last time that you seem to be having this time?

Ross

Go in Bill!!!! No regrets or should coulda wouldas. Your body is telling you something, listen to it. best of luck

Hi,

I have Hodgkins stage 2B and a mass in the mediasternum for which I am to recieve 2 cycles of BEACOPP. I havent heard anyone mention BEACOPP regime. I am ssuming everyone on this post board lives in America. I'm wondering whether talking to the docs about it might help. Its been known to be very successfull with hodgkins bulky type of cancer. Popular in Germany and Switzerland but not in America.I am in NZ (could it be insurance related-i know Americans are heavily reliant on insurance companies for their heathcare hence the thought)

Anyway, hope this helps?
Radhika

Radhika:
You’re right in that BEACOPP is not a common HL regimen in the US. That’s not to say it is never used, it is rather only used in certain cases, when the doctors feel that ABVD or Stanford V wouldn’t be as effective. Generally speaking, BEACOPP is only really used in late-stage unfavorable disease, for example if the patient were diagnosed as IVB, and in fact it’s in these cases where groups like the German Hodgkins Study Group has found it to be most effective.

So it actually doesn’t have anything to do with insurance since all the drugs are FDA approved. There is also a rather heavy— compared to other regimens---- sterility/infertility issue with BEACOPP that may be preventing its more widespread use here in the US.

Ross

hey M
Congrats to the 5 yr that is very important when you have a stem cell transplant I didnt have a donor they drew the stem cells from me when i was in remission. It took along time to get there but Its now 15 yrs for me. You chances of staying in remission after 5 yrs jumps up to 90 % cure rate at least at my fives yrs it did I had mine done at UConn Medical Ctr. in May I ask where you are from.
Kim

Hey M ! Congrats on your five year anniversary of remission!
HAPPY HEALTHY STRONG FREE

mgiffordhome - congrats on 5 years from a 30 year survivor, here's hoping your next 25 years are as normal as my last 25 have been.

Doug

Congrats- praying that a week from today I find out I'm in remission...

congrats on the five yrs for that is what the drs are thinking of what they may do on my husband for this is his 3 time with Classical Hodgkin's Lymphoma Mixed Cellularity......

Yrs before we met, then we met in 99 and he was cancer free for years and up until last July......

It came back, but he got severe Phemonia from the chemo so they went Radiation on him......

So now it is back......

He is a stage 3

I want to read up on Classical Hodgkin's Lymphoma Mixed Cellularity but can't find a site on it or a site that I can order a book to be delivered to my house......

anyone know where there is one

Sully-
Boy, 12 years later, it would be really, really rare for him to ‘relapse.’ i think most everyone would say that he was cured of cancer back in 99 or so, and that this is a new cancer. The fact that it’s the same subtype, well, that’s a bit odd too. Typically when Hodgkin’s patients develop cancer years down the road- this goes for breast cancer patients as well- it tends to be a non-Hogkin’s subtype, like DLBCL,something like that.

So his new dx is the same as his previous dx from over a decade ago?

Ross