Non-Hodgkins Lymphoma info?

[secondchance]

Just heard thru the family grapevine that an uncle has been diagnosed with this. Mother has known for weeks apparently, and has forgotten to tell me.

Aside from knowing what I just quickly looked up on the internet, does anyone have any firsthand info on this illness? I'm waiting to hear back from his daughter to see what they know about his staging, and am pretty concerned. Thanks.

[sunflower]

I'm sorry to hear about your uncle's diagnosis.

I don't have first hand knowledge, other than my over alarmist doctors told me I probably had it last year. My glands are still constantly swollen, but luckily it was not diagnosed as lymphoma. I did a lot of research in those couple of months though, and I think finding out the stage is important. From what I understood, success of treatment has a lot to do with that.

My best wishes to your family as you go through this difficult time. I know how you feel, and even though it's not lymphoma, I do have a family member with cancer and if you need to talk at any time feel free to send a PM. Hang in there.

[Bob Juch]

No first-hand knowledge, thank God, but I know there are about 20 types of Non-Hodgkin's. Survival chances very depending on which one it is. Hodgkin's Lymphoma is considered the "good" one as it's the most curable.

[ksbirchtree]

Unfortunately, I do have first-hand knowledge. Sister was diagnosed with NHL in the summer of 1994 at age 50. She had a bone marrow transplant in January of 1995 (used her own stem cells) and did OK for a few years. After about 5 years she started having tumors along her spine and the last 5 years of her life were spent battling one form or another of the disease. She passed away in May 2004, after a 10-year battle.

I believe she started out at stage 3 or 4, as I know she had secondary tumors in her liver and lungs. A round of chemo before the bone marrow transplant took care of those.

Not a fun disease... good luck to your uncle.

The other Christy

[silvercamaro]

Just heard thru the family grapevine that an uncle has been diagnosed with this. Mother has known for weeks apparently, and has forgotten to tell me.

Aside from knowing what I just quickly looked up on the internet, does anyone have any firsthand info on this illness? I'm waiting to hear back from his daughter to see what they know about his staging, and am pretty concerned. Thanks.

We need some good news here. I have a small group of good friends with whom I've had dinner once a month since we took a seminar together in college. One of them is a 21-year survivor of non-Hodgkins lymphoma. He, along with other long-term survivors, is part of a local support group for people who have been recently diagnosed, and his message is that the diagnosis is not an automatic death sentence.

He also was helpful to me when my dog Ashley had lymphoma, because the chemo protocol for canine lymphoma is almost identical to the treatment for people. You may be able to find a similar support group through your (or your uncle's) local cancer society. Google also can help you find an astonishing amount of information on the disease, the treatment, complications, prospects for the future, and local contacts.

[kayrharris]

My very good friend, Carmen, was diagnosed with last year - stage one...which is a good thing.
The lymphoma has responded to chemo and radiation quite well. She has other issues not related
to the cancer that have caused her setbacks, but her prognosis is quite good. She is in her mid
sixties. Apparently, advancements have been made in treatment and if it is caught early, full
remission is pretty much expected. She has not had a bone marrow transplant and it has not
been mentioned at this point.

I also have a friend whose son was diagnosed with this in his late teens. His treatment was quite
successful and he is now in his mid forties, married with two children.

A lot of things are determined by how healthy a person you are when the treatment begins. It helps
to be able to have the stamina to come through the chemo and be able to fight off infections.

I don't where your uncle lives, but I would be sure his treatment is provided by a first class medical
facility. My friend goes to Birmingham, which is 100 miles from here, but they are so much more
advanced and have so many more options available to her, that it's worth the trips there.

[BigDrawMan]

mario lemieux had it in the early 90s
he took several months off during the season for treatment
he returned to win scoring title
it dint return

[etaoin22]

Non-Hodgkins (NHL) is actually a complex, probably, of many different disorders, and the classifications used have changed greatly during the years.

What has not changed at least over most of the last few decades, is this:

Hodgkins's Disease was the first of the lymph cancers to have a well-thought out and successful treatment plan for all stages of illness, so, at that time (circa 40 years ago) from the cancer doc's point of view, there was Hodgkin;s about which much was known, and there was non-Hodgkins, about which little was known.

This relative paucity of knowledge has long since been filled many times over, and these tumors are now among the better-understood of human malignancies.

The treatment of NHL is based on a paradox:

Many of the apparently aggressive forms are actually more responsive to standard multi-drug chemo, and these were the first to give a nice survival curve, with a nice non-zero tail for long-tem suvival.

By contrast, indolent forms of disease can be suppressed relatively easily by chemo but never cured, and a lot of pts simply died maybe 10 years after onset of illness, until transplant became a treatment option.

Senator Paul Tsongas of Massachusetts had that kind of indolent lymphoma, had a transplant and ran for President. Unfortunately, he did not own up to the fact that at the time of his candidacy (1992) he had already had one post-transplant tumor recurrence.

I can't speak though for the last few years of research and innovation because I have not looked at it, at some point genetics and other more focussed forms of treatment will help or even trakd over.

[ghostjmf]

All I can add is that a friend's father had it over 30 years ago, & despite treatment being in its infancy then survived many years after diagnosis; 10 or 15 at least. His greatest trouble was from resections of tumors out of his intestines (related to the lymphoma, they were at least told at the time) after which his intestines kept trying to glue themselves together side-to-side & not be tubular; adhesions of the intestinal walls, I believe its called.

[VAdame]

mario lemieux had it in the early 90s
he took several months off during the season for treatment
he returned to win scoring title
it dint return

Mario actually had Hodgkins, not non-Hodgkins.

I'm not an expert, but we treat a fair number of patients with both kinds. Some people do very well; some don't. I'm on my way home now, but I'll get some info from Dr. Kottapally tomorrow and pass it on if you want. Good luck to your uncle!

[Weyoun]

I can email you some fairly good summaries of NHL if you would like.

[secondchance]

Hey, thanks so much to those who replied, and for your concern. And, I send my sincere sympathies re your friends and your sister, christy, and am grateful to hear the good reports as well. I heard back from my cousin, and, although she didn't mention his staging, it seems like they have uncle's situation under control, he's already begun treament, and it doesn't seem as bad as i feared. My first thought was, "is this fatal - how long does he have to live?," and this I was afraid to come right out and ask her. (she didn't mention the non-hodgkins part, but her mother confirmed it was that). Unfortunately, I do have quite a bit of firsthand knowledge on "regular" cancer and chemo, as well as abdominal adhesions. But I didn't know anything about NHL before. If anyone here has already gone to the trouble of gathering information for me, I'm very appreciative- and feel free to PM me and I'll forward it on. Otherwise, I think they've acquired a lot of info already on their own and have a handle on his treatment. Here's part of my cousin's response :

"He is doing ok, as could be expected. He was diagnosed with Lymphoma and has started chemo. It is the chemo that is making him sick. Lymphoma is curable, but to get cured he has to do the chemo. It is just the first round, so he is getting initiated. He had it a couple of weeks ago, so things are starting to calm down for him. But he feels completely exhausted. No energy, no appetite. That seems to be the normal side effects. He will probably start to feel better just in time for his next round of chemo in about 10 days.
That's really all that there is for now. He was feeling fine up until the chemo. He will have another couple of treatments every 3 weeks, then access how he is doing. He is healthy and has a good outlook, so that is why the doctor decided to do chemo. Most times they won't do it for someone his age. When people are older the cancer spreads much slower. When people are young their cells are reproducing much quicker, so the cancer spreads faster. But since he was healthy, they went ahead and did it. Next time they will give him 90 percent of what he got and maybe he will tolerate it better.
It just sucks what he is going thru, but luckily it is curable, and he is healthy. He will make it thru. He is a strong person."

btw, my uncle is 82 years old, but was amazingly strong and healthy before this - you'd never believe he was over 70.