Hodgkin's Lymphoma Support Group

Hello Jen,
sorry to hear your news. I relapsed after 10 years: just when you think you are in the clear. Have you got classical HD, or lymphocyte predominant? Late relapses are very rare with the former.

It is quite difficult to predict how chemo will affect you. I assume you are going to have ABVD? This is generally considered the gold standard. People do vary a lot in how they tolerate it, but there is a general pattern of feeling rough in the days following the infusion, and then gradually starting to recover before the next dose. People vary in how many bad days they get, and how bad they feel during those days. As treatment progresses, most people feel more run-down, and fatigued. Personally, I experienced little fatigue to begin with, but by the end I was sleeping 12-16 hours a day during the first week. Nausea and indigestion can be a problem in the first few days, and although there are good meds to counteract this, it may take a few attempts to find the right one for you. Although things do vary, the pattern you experience during your first cycle should be fairly typical. However, a lot of people find that first cycle very difficult as they don't know what to expect, and your body has not adapted yet to these extremely strong drugs.

Don't know if that is any use to you. If you have any specific questions, please ask. I hope it goes ok.

Thanks for the advice. That's quite helpful. I think I'll ask Mama to come for the first round, to help adjust, and then again around the fifth month, when I'm all fatigued. Assuming I'm typical (and my oncologist did say I'd probably do ABVD), does that sound reasonable?
I've not heard of lymphocyte dominant vs classic HD. Could you explain?
Thanks!

Hi Jen,
I think that would be a sound strategy. People do vary a lot in how they tolerate this treatment. I found it really tough, but that is not to say that you will.

My question about the type of HD you have came from curiosity, rather than anything relevant to your treatment. There are several different forms of HD, based upon how the cells look under a microscope. Four types are grouped together under the heading of "classical" HD - these are nodular sclerosing, lymphocyte rich, lymphocyte depleted and mixed cellularity. They are considered to be different forms of the same disease, and are diagnosed by the presence of Reed-Sternberg giant cells under the microscope. Lymphocyte predominant, which accounts for only around 5% of cases, was originally considered to be just another variant of HD, but is now considered to be a separate illness. On examination, there are cells called "popcorn" cells present, which were originally considered to be a type of Reed Sternberg giant cell: however, this is no longer thought to be the case. Like HD, it is most common amongst younger patients, usually first presents with an enlarged lymph node in the neck, and responds to the same treatments as HD. So it is still classified as a form of HD, at the moment. Non-hodgkins lymphomas are treated with a different form of chemo called CHOP. Lymphocyte predominant is the form I have.

The reason I was curious was the length of time that you were in remission. If classical HD returns, it usually does so within the first few years. It very rarely reoccurs more than five years after treatment. Lymphocyte predominant is one of the slowest forms of lymphoma, and consequently is known to reoccur after this five-year period.

Whichever form you have, ABVD will almost certainly put you into remission. Good luck with everything.

I see. Thanks. It sounds like I have the lymphocyte predominant. It's very slow-moving and has taken a long time to show itself again. I'd like for this to be the last time though!
Where are you in your treatment, please?

Hi Jen,
sorry, I've not been on here for a few days. I had my last dose of chemo mid-August. This was unfortunately the second time I have had chemo, having also undergone 6 months of a different therapy called ClVPP in 1997.

Your Dr. will be able to tell you what type of HD you have, as biopsy results will be in your notes. As I said, the treatment is the same either way, and is very effective.

Hi Jen,
I am the mother of a 27 year old that came back to Toronto and me to help her through chemo and radiation, she was truly blessed and never experienced nausea at all, though at the treatments went on, she became more exhausted, needing afternoon naps etc. YOU might have completely different symptoms. IF friends and family offer to help, take them up on it, even if its to watch your children a few hours here and there, rest, let your body heal, and keep possitive. My daughter has a great guy that proposed 5 days before chemo started so we worked on a wedding while she was going through treatments, I believe this helped her keep possitive and upbeat. Keep in mind all the blessings in your life and focus on them, ask for help if you need, sometimes friends and family don't know what to say or do, let them know, usually they will want to help but don't know how to ask you. Not sure where you live but listen to others that have gone through it,. ABVD was my daughters treatment till she started to have a bit of breathing problems, then they just removed one part of the treatment. Her treatments were finished sept 8th then last weekend she came down with Shingles, which is common, so a few weeks before her wedding and we are thinking, okay this is another bump in our road to jump over!

That's a great reply! What an exciting time for you all! I appreciate your daughter's experience with the side effects. It seems there's quite a range of possibilities. I think I'll let Mama decide based on the range of possibilities and on the timing generally.So many things to think about! Good luck with the wedding and with the Shingles!