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These are the first Very Helpful email responses that I got from the NHL email loop



Greetings Liz,

The best place for you to start learning about lymphoma is our own NHL Cyberfamily website. Here is the link if you have not already found it.
http://www.nhlcyberfamily.org

Once you have browsed all there is on our website the Links page will lead you to other websites with more information on specific topics.

The very first thing you must do is find out what type of lymphoma she has. B-cell is not a type of lymphoma. It is simply a statement about whether her lymphoma is of B-cell origin (85% of them are) or T-cell origin (the other 15%). But there are presently 27 official types of non-hodgkin's lymphoma and 5 types of hodgkin's lymphoma. B or T cell means nothing really until you know the exact type.

The cure rate is impossible to pin down without knowing exactly what she has. If she has Hodgkin's Lymphoma then the cure rate is generally in the 80%+ range. Non-Hodgkin's (7 times more likely) is harder to predict. The indolent (or slow growing) kinds are not curable. However their slow growth means that patients live for many years with it and simply treat it when it crops up again. This can go on for 10-15 or more years for many people. Approximately 50% of the patients who have non-hodgkin's lymphoma will have one of the indolent types. For example I have the most common of the indolent types - follicular lymphoma. I was diagnosed 7 years ago.

The aggressive types account for the other half of the non-hodgkin's lymphomas. Of those aggressive types Diffuse Large B-cell (DLBC) is the most common one, and I would guess this is what your mom has. Because of their aggressive nature, the chemotherapy is better able to target the cancer cells, and thus, about 50-60% of patients with aggressive non-hodgkin's lymphoma can be cured.

CHOP+ Rituxan (the R you were trying to think of ) is the Gold standard for treatment most forms of NHL, both indolent and aggressive. It is likely they are not giving your mom the Rituxan for the first round because hers is so widespread and CHOP will kill it so fast they don't want to risk damaging her kidneys by giving Rituxan at the same time. All the dead cancer cells have to be flushed out of the body (in the urine mostly ) by the kidneys. CHOP kills NHL radically fast in most cases, and therefore it is important not to overwhelm the kidneys.

I guess you will soon know how well she tolerates the CHOP, but for most people it is quite well tolerated, and there is rarely the horrible barfing and sickness that TV has conditioned us to believe is normal. In fact nausea is very unlikely with the modern anti-nausea drugs we have such as Ondansetron (Zofran) and Granisetron (Kytril). Fatigue is the most common side effect to give people trouble. I had 7 rounds of CHOP myself and it didn't slow me down any. I continued a perfectly normal routine throughout it.

Best of luck to your mom. If you have any questions at all just ask us. Welcome to our group!!!!

Greg D.
dx 09/98 follicular mixed cell, Stage IV
CHOP X 7, Radiation X 20; 09/98-05/99
SCT 04/17/2002




Liz,

We have about a 1000 people on this list. My guess is that most of us are patients, the rest are caregivers or have a near relative who walks with the beast. Sorry to learn that your mom has the disease, happy that you found us ... great batch of people here.

For starters met the beast at age 58 and your mom is running just about six years behind me within just a week or two. I was/am diagnosed with high grade diffuse large b-cell (DLBC) stage 2b (neck) and shoulder. DLBC is one of the most "popular" forms of NHL but it is also one of the easiest to treat and has a good cure rate.

garrison6no7 wrote:
>My mother was diagnosed with large B-cell Lymphoma last Saturday -- >she had been getting sicker for about 8 weeks & we'd been taking her >from dr to dr (at their s-l-o-w pace) until the morning of Wed June >first when we got the info that her MRI was abnormal, bone scan >indicated 7 hot spots & she also had become critically ill with >desperately low bp & blood counts (also her electricity shorted out & >caught the house on fire that morning -- but that's another story & >surely not related!).

> > As the saying goes "Good news comes all at once!" When "they" finally diagnose NHL, is it not interesting how the pace speeds up?

>The drs told us it was B-cell & was treatable but didn't give us much >information beyond that -- so we don't know stage (& I don't know how >"involvement" is defined) or prognosis. Mom is 60, her lymph nodes >were "all" swollen but determined to be reactive; bone marrow was >"chock full" of cancerous cells; spinal fluid was "clear for now"; >

Clear spinal fluid is a good sign.

>spleen & liver were enlarged;

> The spread and "involvement" of NHL, which leads to higher stage numbers, is not "bad news" as it is with other forms of cancer. NHL, by its nature, is a systemic disease and is countered by chemotherapy which is a systemic treatment. In other words the NHL can run but it can not hide as the lymphatic system is part of our circulatory system and the chemo goes throughout your body.

>she had been severely fatigued for weeks;

> Fatigue is a usual symptom.

>her chin & lower lip have been numb for about 6 weeks; >beginning at Easter she had transient EXTREME pain in her upper arms & >thighs; over the 5 days prior to hospitalization she began having >double vision & one eye goes wonky if she looks left.

> Not sure all of these are usual symptoms, but I am not an expert.

>They started chemo (CHOP) as soon as they had a diagnosis last Saturday. Did not >use the r-drug (can't remember the name) since the lymphoma was so >spread out, probably will use it next round.

> CHOP is the "gold standard" treatment. The R-drug is Rituxan which was just coming into vogue when I was first treated with CHOP six years and 9 days ago.

> <>She's had so many transfusions of blood products that I've lost > count (& I'm an > accountant, so that's a lot). She's developed pneumonia & pleurisy in > the hospital & we just took her home yesterday.

Not sure all of that is "usual" but considering the time she was undiagnosed, one can never be sure. Not associated with my NHL but about 20 months prior to my diagnosis, I spent a week in the hospital with pneumonia & pleurisy so I can very much appreciate that little bit of amusement. > <>I would be thrilled with any pointers to helpful websites, other > groups or books. > What should we expect as any reactions to the chemo?

Continued fatigue for the duration of treatment which will slowly subside afterward. As she feels up to it some time (several months) after ending treatment you mom should start some sort of light exercise program such as walking around the block which will help her build her energy reserves. Continuing as a couch potato will not restore any energy levels ... increased energy also helps with one's sense of well being.

> <>Particularly with very low blood counts going in. > Is it generally not considered helpful to tell a patient prognosis?

Not with some ... but a lot depends on the patient. Some people just don't want to know the details of their disease and others read books on the subject. Me? I want to know everything.

I'll bore you with a few numbers for only a short while. As my oncologist told me 60% of those who are treated with CHOP go into remission, the other 40% go on to other forms of treatment; 60% of those in remission will not relapse (considered cured), the other 40% go on to other forms of treatment. That means about 35% of those who start the journey will only see their oncologists for follow up visits. Time wise, of those who started the journey with your mom, 50% will have relapsed at the 5 year mark, 15% will relapse after the 5 year mark, which leaves 35%.

Whether or not you tell that to your mom is up to you. One very important point to remember is that those numbers are based on a very large number of people. One can not say that they are not going to make it based on the fact that the group has a 35% cure rate. For those who relapse and go on to other treatments also have similar results..
NHL is not a death warrant by any stretch of the imagination. True, some do die of this disease, as have some members of this list, but the very large majority either continue the battle and some of us win the battle.
An excellent book that came out just as I started treatment, is "Non-Hodgkin's Lymphomas: Making Sense of Diagnosis, Treatment & Options" by Lorraine Johnston. It is easy to read and understand and is written for the patient and caregiver rather than full of medical jargon.

> <>Their feeling is, she's started treatment, no reactions after one > week, she'll just have to visit the dr 5 more > times & that will be it (is it helpful to have that outlook?)

You and they can say good bye to mom's hair between day 10 and 15 since the first chemo. It will come out in clumps and this can be quite traumatic for a woman. Most of us just buzz the clumps off with the trimmer attachment found on most electric razors or just use the doggie clippers. I am a boy so I had fun running around with a skin head for the duration of chemo plus about six more weeks when it slowly started to come back in.

If mom has tumors near the surface of the skin, the tumors should begin to reduce in size. Mine, the size of a half section of grapefruit on my neck, disappeared in 24 hours but then I was a "text book" case.

> <>The drs have said they don't know what is causing the numb chin or eye > problems -- any ideas or suggestions? I'm open to any & all info.

I am not medically trained, but there are a few people on the list who have either primary or secondary NHL in the brain. To me, this numbness and wandering eye problem would suggest some involvement of the central nervous system, but that would seem contrary to the fact that her spinal fluid shows non involvement. You might ask that specific question: Does the numbness and wandering eye suggest CNS involvement?

Charlie

OBTW, one very good site to visit is the FAQ section at http://www.nhlcyberfamily.org, which is maintained by Greg D. who is both a patient and a co-moderator