Remission time

[Josie2rulrs]

Hi, Was looking to hear from others who have Stage 1 Grade 1, LGFL,

I'm on watch and wait since May, 2015.....

every three month visit with oncologist...

had node from neck removed and no treatment

looking to see how long people are in remission....

thank you

[R-16728]

I entered the fray at stage one with no obvious lymph issues. I did a chemo treatment after about three months waiting. That was 2008! This cancer just hangs around waiting to rise up and annoy us. I'm currently exploring a "Eat for Cancer" diet which holds real promise for NHL sufferers. The Kill Cancer Meal Program, Crawford MD, Ken I'm also reading articles on a website that purports the same thesis ie. we can overcome cancers by changing diet and life style. lymphomasurvival.com

[Josie2rulrs in reply to R-16728]

thank you for that info....we will all be fine....

[Shar0n Volunteer]

I also had one node removed but within 6 weeks of surgery, a new one popped up also on my neck. I was offered radiotherapy - basically it would have been ear to ear and I turned it down because of potential after effects . Still have that one node no bigger and still on w&w since Nov 14. My blood tests have been okay since then and no other symptoms. Last check was in Dec.16 and next one in May 17.

[Josie2rulrs in reply to Shar0n]

thank you

[Josie2rulrs in reply to Josie2rulrs]

we keep strong....

[laylalulu]

Hi I'm on watch and wait too! I'll be 3 years in September, all seems to be going well. praying for lots more WW. I've had no treatment either, other than having my enlarged spleen removed. My doc says the couple of lymphnodes and bone marrow involvement should reverse itself once my cancerous spleen was removed. On trimonthly bloodwork and yearly checkups. Goodluck to you!

[Josie2rulrs in reply to laylalulu]

I like to know others treatment and I always see people who have had treatment but very few like myself who so far had none...just node removed.....fingers crossed...good luck to you also.

this may will be two years for me.

[R16728 in reply to laylalulu]

Hi, I'm finished treatment for my NHL with no options left. I have a very enlarged spleen. I'm wondering whether removing it is an option? It's causing me considerable pain and discomfort. Do you know if spleens can go down naturally given time?

[laylalulu in reply to R16728]

Hi I just had my spleen out right from get go. After that no chemo or any other treatment. Every doctor must be different in their treatment plans. I know a lady who had enlarged spleen and also a type of lukemia, she's been having chemo treatments but did not remove her spleen. My lymphoma was splenic marginal zone. Once they took out the spleen everything seemed to regress, my blood work is good so I'm praying it stays good. You should discuss with your doc if it's painful. Mine was pressing on my kidney and it was excruciating for sometime . I hope you find a relief from this too. Good luck. 3 years in for me yay

[R16728 in reply to laylalulu]

Thanks for this. I'll be talking with my man in a week or so after a cat scan. I had some reduction from a single prednisone I took yesterday. The size is up again today but I'm hopeful the prednisone was the helper since I'm only on one pill every second day. Three years is great! I was 5 in remission and 2 plus on zydelig with two more made up of treatment etc. I've be nine years with low growing indolent NHL that apparently is in my marrow and of course now affecting my spleen. I gather other lymph glands take over the spleens job when it goes missing?

[Familye31]

Hi im on watch and wait and have my first check up next week im worried already that it will be bad news. I joined my local Lymphoma support group last week and met a lovely lady who was 22 years on watch and wait. She had chemo 10 yrs from diagnosis and that was 12 years ago !! good luck everyone we can live with this shit !!

[Josie2rulrs in reply to Familye31]

Right on!!!! Yes we can ....wow 22 years that is great news.

you have to think always that it will be good news!

[TezzM in reply to Familye31]

G'day, my first check up next Monday March 6th so I'm in the same boat. We can compare outcomes next week. Terry

[Josie2rulrs in reply to TezzM]

Good Luck

[Judyhoneycomb]

Josie can you explain to me what LGFL is please. I have Non Hodgkin Lymphoma Mantel Cel and was stage 4. Enlarged spleen... Swollen nodules all around neck from ear to back of neck, down to groin. They biopsyed and removed one on back of neck and bone marrow for my diagnosis and put me on R-Chop immediately. Within week all nodes were reduced in size and spleen went down. That was in April 2015. I am still on a 3 month infusions of Rituxin until July 2017. In remission and it had been in bone marrow which made me stage IV. I hope all goes well for you...

[Josie2rulrs in reply to Judyhoneycomb]

best of luck to you.......

it is Low Grade Follicular Lymphoma..

[Esther66 in reply to Josie2rulrs]

That’s what I have! Been a year in now and my nodes are up everywhere, neck under chin groin armpits and stomach my spleen in now 14 cm I’m ITP and that’s at 59 still wait and watch no treatment...

[Judyhoneycomb]

Thank you Josie...heal well...

[marycassar51]

My name is Mary, I have also been put on watch and wait. The bone marrow was positive for LGFL, but I still feel sick and in pain. The node on my neck are very sore. It is frustrating that nothing can be done to relieve my pain. So now I have to see my oncologist every three months.

[Josie2rulrs]

May be you should seek other opinions...You should not have to be in pan.