Newbie: Hello. My name is Plooch and I... - Non Hodgkin's Lym...

Non Hodgkin's Lymphoma Friends

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plooch profile image
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Hello. My name is Plooch and I'm new here, but not new to NHL, haviing been diagnosed nearly eighteen years ago. For a long time, my doctor and I played "watch and wait". About nine years into it, my spleen became quite enlarged and I was treated with R-CVP. with a straight rituxin chaser. The disease didn't completely respond, however, I have been very fortunate with no overt flare-ups. It is small-cell and indolent

Has anyone here had a si,ilar experience?

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plooch
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14 Replies
krayburn profile image
krayburnPartner

Welcome Plooch! We're excited you could join our community!

BLP1211 profile image
BLP1211 in reply to krayburn

Thanksm

maria50ec profile image
maria50ec

My NHL was diagnosed 7 years ago but had probably had it for ages. I've had every treatment going now and have reached pretty much the end of the line. have always been quite envious of the watch & wait crowd! But very glad you've responded well to treatment, there are lots of new things happening all the time in lymphoma circles.

laylalulu profile image
laylalulu in reply to maria50ec

the immune therapy is looking promising for other cancers maybe us too!

Shar0n profile image
Shar0nVolunteer

Hi Plooch - I'm Shar0n,only two years since diagnosis with indolent NHL and so far on w&w. No treatment so far and going from checkup to checkup .

jmcobb50 profile image
jmcobb50

My oncologist said I could stay as "watch & Wait" for 20 years or more. It is scary wondering when the Wait, will come to an end. I hope soon there is a cure for NH Indolent Follicular Lymphoma. I have changed my diet to more plant based, started Pilates, retired from my very stressful job and taking supplements and smoothies. This does remain in my thoughts continuously. I seem to have improved and haven't had a CT since March 2016 since my labs are good and he no longer feels the nodule. I will be restaged in December with a CT. I worry about the costs associated with therapy if and when it is ended. Has anyone been watch & Wait for 20 years without any treatment?

Josie2rulrs profile image
Josie2rulrs in reply to jmcobb50

I JUST HAVE BEEN diagnosed in 2015 and I love hearing of people with this for a very long time....

I go to doctor every three months...and I try to put it out of my mind and to live a healthier life style but people don't realize how difficult to do.

Josie2rulrs profile image
Josie2rulrs in reply to Josie2rulrs

meaning I am happy that you are still doing well

Josie2rulrs profile image
Josie2rulrs in reply to Josie2rulrs

I would like to hear also from other on watch and wait with low grade follicular lymphoma

Faithoverfear profile image
Faithoverfear

Hi Plooch! My name is Ruthie and I was diagnosed on February 27, 2015 with small b cell NHL and I, too, am on the Watch and Wait protocol. My oncologist says I am doing well but that the time is soon coming that i will need to start treatment. I pray that we both will be able to Watch and Wait for many more years to come!

Josie2rulrs profile image
Josie2rulrs

18 years is a long time....They are getting closer and closer to a cure...I hope.

We need to be active and do the walks, etc.

I just got diagnosed with stage 1 grade 1 LGFL....

follicular....

on watch and wait.

BLP1211 profile image
BLP1211

What is R-CVP?

in reply to BLP1211

BLP1211,

R-CVP is a combo of drugs:

Rituximab (monoclonal antibody)

Cyclophosphamide

Vincristine Sulfate

Prednisone (steroid)

Adding Doxorubicin to the above would make the combo R-CHOP.

Both are successful treatments for FL.

Hope this helps,

Cobina

BLP1211 profile image
BLP1211 in reply to

Thanks.

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