I have indolent, stage IV NHL

skeff · New User Joined: 24 Jun 2005 Posts: 3

Anyone have any info on the reoccurrance and survival rates of this kind of cancer? I have affected nodes in neck, armpit and abdomin, as well as in the bone marrow.

I'm an opotimist by nature, but I really want to know the truth!

lau12 · New User Joined: 06 Jul 2005 Posts: 3

About 3 months ago I was diagnosed with indolent, stage IV NHL.
It is found in my neck, upper chest, armpits, and bone marrow.

Since being newly diagnosed I am unaware of the survival rates or reoccurrence info.

If you dont mind sharing, what specific type of NHL do you have?
I have Marginal Zone NHL and was looking to find more personal information about living with it, survival rates, and other info.

skeff · New User Joined: 24 Jun 2005 Posts: 3

I'm not sure what "marginal zone" means. My lymphoma is "B cell", indolent (slow growing) stage IV. I don't know what to tell you... basically I am looking for the same information. From what I've read, the success rate for the actual treatment phase is very good. However, it's my understanding that it frequently returns within a 2 year timeframe and could do so again and again as either the same or a varied type of cancer. My understanding is that some people have had reoccurrences off and on for 20 years or more, some people have never had a reoccurrance.

What I'd like someone to answer for me, is what are the odds both ways??? I've read that in one study 60% were still alive in 10 years. So I guess the other 40% didn't make it? Were the 60% still sufferring reoccurrances? I wish these articles were more clear!

Can I decrease the odds of reoccurrance by exercise, diet and holistic means? Should I get rid of all my teflon pans? Do I need water and air purifyers???

I'm sorry, I have more questions than answers, myself.

Are you taking Chemo? How long does your Doctor say you will initially take Chemo? How are you holding up under the treatment?

cjs

anjou · Experienced user Joined: 01 Jul 2005 Posts: 65

A good source for information on lymphoma

www.lymphomation.org
_________________
Follicular lymphoma grade 3, stage 2 dx 9/99 CHOP x 3 3600 rads rituxan x4

lau12 · New User Joined: 06 Jul 2005 Posts: 3

I believe marginal zone may be another name for b-cell lymphoma, but I am not one hundred percent sure.

My doctor decided on wait and watch for now and my second opinion doctor agreed on the same thing. What treatment are you undergoing or have already?

They found it difficult deciding what treatment I would need because I am 21 years old and there are not many cases of someone my age having NHL. How old are you?

Also I do not have many severe symptoms yet, just a large lymphnode that was removed when I was first diagnosed, becoming tired very easily, and before the lymphnode removal having recurring upper respiratory infections, but nothing major. When were you diagnosed?

Is fatigue a symptom you experience?

skeff · New User Joined: 24 Jun 2005 Posts: 3

I'm so sorry to hear that you are so young and having to face this! I'm 50 years old and I'm the youngest person I've seen at my oncology office (with the exception of 1 girl who had breast cancer I believe - she was your age or maybe younger).

I had an enlarged lymph node in my neck in 2004. My ENT took it out and had it biopsied - the results were "abnormal cells", but not cancerous. A year later, another lymph node enlarged and upon having it biopsied, I found out that I had NHL. Mine is b-cell and it was found in my neck, both armpits, my abdomen and bone marrow. I'm guessing, but the decision to treat me -vs- your doctor's wait and see, may be because mine involves sites above AND below the diagphram... I've read that it can make a difference in treatment.

My treatment consists of 3 days of chemo therapy every 28 days. My doctor said that the initial time frame would be for 4-6 months. June was my 4th month. I went for a CT scan today - that will determine future treatment.

As far as symptoms that I had, I was feeling very fatigued, but that had been going on for several years... I thought that it was all due to stress and being pre-menopausal - and maybe it was... but fatigue is one of the symptoms of NHL. Also night drenches... that's when you wake up sweating profusely - my night sweats were accompanied with chills and aching - like having the flu - I figured that was pre-menopause symptoms as well. I really didn't have any other symptoms...I never would have known if the lymph nodes in my neck didn't swell.

I wish you the best! Keep in touch with me about how you're feeling and what your doctors say.

Best Regards,
skeff

lau12 · New User Joined: 06 Jul 2005 Posts: 3

Yes it had been such a shock after I had an enlarged lymphode removed from my neck to find out that it was cancerous. I didnt even think that it was possible that my biopsy could come out positive.

It is odd because, for almost two years I always noticed I became tired easily and always had blood tests done for mono and underactive thyroid, but they always came out negative. Then this past year on and off I would get upper respiratory infections, at the same time my doctor noticing how large the lymphnode in my neck was.

At the time of my diagnosis, I was away at college, finishing my junior year. It was very hectic because for the last two months of school I was going back and forth for testing. I wanted to finish school out, but at the same time was trying to deal with the shock of it all.

Having one more year to go, along with only having a symptom of fatigue were factors in my doctors wait and watch decision.

Right now I am apart of a study. They tested me for many viral and bacterial infections that were found in other cases of people with NHL. I actually tested moderatly positive to one of them and am on an antibiotic to get rid of it.
There is no literature on this infection, but some of the other infections they tested me for were found in NHL patients and when they got rid of the infection, some or even most of the lymphoma also went away.
So I guess its worth a shot while I wait and watch.

But thank you, it is great to be able to talk to someone that really understands what I am going through. I sometimes find it hard to talk to my closest family members and friends because at times I feel they deal with the situation by being in somewhat of a denial of it all. Do you find that with your family and friends?

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