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Hello, anyone out there???

Saj's picture
Saj
Posts: 2
Joined: Jan 2003

Hi, I'm 28 years old and was diagnosed with Indolent B-Cell NHL back in June 2000. I was relatively symptom free until last winter when my right lung filled with fluid. At that time I went through 6 rounds of chemo (CVP). I have been feeling better although can't help worrying about some sort of reoccurance. A lot of literature out there is very discouraging. Sometimes I struggle to remain positive. I'm just looking for someone with a similar situation to talk to, share experiences, and hopefully gain support. Thanks!

kdoll
Posts: 1
Joined: Jan 2003

Hi Saj, I too have indolent NHL. I was diagnosed when I was 27. Had no symptoms and an unrelated chest x-ray showed lymph nodes. I had CVP in January of 2000 because my spleen was uncomfortably enlarged plus I had bone marrow involvement. Only had 3 rounds because I became pregnant. Before I knew I was pregnant, I had a bone marrow biopsy and it came back showing no signs of cancer and the spleen was back to normal. Since then I have had no treatment, all CT scans show nothing to warrant treatment. Meaning, I do have lymph nodes involved but they show no signs of significant growth in the past 2 years. I do feel more in my groin, which weren't there before but just not anything big. I too am worried about reoccurance, as you know they say it's inevitable, but I cannot live like that. I always stay positive and live my life like I am completely normal. Why should I waste my time thinking about what could happen, it does me no good!! Besides the fact that I have 3 wonderful daughters that I need to watch grow up. Feel free to talk to me anytime!!

digget
Posts: 1
Joined: Dec 2002

Hello Saj. I'm Digget.I was diagnosed around July because of fluid in my left lung. operated on to stop fluid,then 8 rounds of Rituxan. Pet scan has shown after 3 months its no better but no worse.Will do another pet and cat scan in march.Doc sayes I will probably have to do more chemo.Keeping my fingers crossed that its better.I am 47 and have got lowgrade,stage 1 NHL.

ship1234
Posts: 3
Joined: Sep 2002

my husband has nhl aggressive in spleen and lympth nodes he is doing ok had 8 cem &ritxon had pet scan think may do stem cell trasplant dont you think you may can do stem cell to god bless shirley by way he is 67 years old

wallpa's picture
wallpa
Posts: 24
Joined: Apr 2002

Hi Saj,
I, too, have NHL. NHL is a funny cancer. If you have aggressive NHL you have a much worse prognosis than someone with indolent NHL. HOWEVER, if aggressive NHL responds to treatment, it can be cured. If you are diagnosed with indolent NHL, you have an excellent prognosis but with very little chance of complete cure. (Average life expectancy of 10 years, but that does not include people treated with recent advances like Rituxan and Bexxar PLUS since most people get NHL in later life, that 10-year life expectancy also includes people who have died from things other than NHL...like old age.)
May I suggest you join the Yahoo NHL e-mail group? There are many, many people there who have successfully been living with indolent NHL for many, many years. (Some were diagnosed in the 70's!) NHL is very treatable. There are also many treatments on the horizon, one of which may be a cure. You are young. If a NHL returns, it can be treated again. I have been in remission since July and I am very encouraged by the treatments available.

patty

halfcast
Posts: 12
Joined: Mar 2003

hi saj,my names jim, im 41, and was first diognosed at 17,bummer hey? since then ive had 5 reoccurances,im battling one at the moment in my left leg,its into the marrow which is pretty worrying.I think the main thing is to try and stay positive, as hard as that is sometimes..I find talking to others really helps because they know what we are going through,its good therapy.hope to hear from you soon..

pops1
Posts: 3
Joined: Mar 2003

Hi Saj: I too was diagnosed with b-cell indolent NHL in Jan of this year. I am 49 years old, and I will be beginning Rituxan treatment next week. I had gone for a routine checkup and nodes were located in my neck, under my arms, and my groin. It has been a scary ride, but I find that I need to talk to others in similar situations. Hang in there and write back if you feel up to it. I could use some encouragement too. We're all in this together. Barbara

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