Anyone Else with SLL - NHL

Mustang67

I was diagnosed in November 2006 with SLL. I was stage IV, lymph nodes in neck, liver, spleen involvement. I did R-Chop with Rituxan and then maintenance Rituxan through last June. It was only in July last year that my enlarged spleen finally went back down to within normal range. I have had abnormal liver tests, as reently as last September, though now they are fine.

I get my pet/cat scan results from a week ago at the end of the month. I have nodes they are watching in my lungs, supposedly its normal to have these there? I am always tired, have stomach issues frequently.and definitely have chemo brain as my family reminds me.

I noticed most here are diagnosed with follicular NHL. Anyone out there with SLL or even CLL as they are paired together usually? Starting out at Stage IV and not getting to CR until 3 years later, I just wonder what I can expect as prognosis. I read that most likely 7 years is median; 5 -10 is the range because of where I started at. So hearing from anyone with SLL and what they have gone through would be great, although I know that no two patients are alike!

Thanks!

yesyes2

Hi Mustang67
I'm sorry that I can not offer you any information or insite as I do not have either SLL or CLL. I do however have a very rare and an agressive B & T cell lymphoma called LPD, very similar to PTLPD. I have never met anyone else with this disorder so I know how hard it is not to have someone to talk with. I even had the LLS and the LRF do a data base search and they could not find anyone else with my diagnosis. Seems like everyone has either fNHL or DLBC. Even research is minimal if at all and forget about trials. When I go to lymphoma conferences all they discuss is fNHL or DLBC. Very disheartening. By the way, I also did Rituxan maintenance for 1 year, every 60 days, and upon relapse did RCHOP 6 cycles. Finished in mid Feb. and am in CR, yipeee! Doctors have really no idea about prognosis, could be cured, could recur, they just don't know as so rare.

Sorry ranted for so long on your thread. Just wanted to share and hopefully make you feel not alone.

Blessings to you,
Leslie

Mustang67

yesyes2 said:

Hi Mustang67
I'm sorry that I can not offer you any information or insite as I do not have either SLL or CLL. I do however have a very rare and an agressive B & T cell lymphoma called LPD, very similar to PTLPD. I have never met anyone else with this disorder so I know how hard it is not to have someone to talk with. I even had the LLS and the LRF do a data base search and they could not find anyone else with my diagnosis. Seems like everyone has either fNHL or DLBC. Even research is minimal if at all and forget about trials. When I go to lymphoma conferences all they discuss is fNHL or DLBC. Very disheartening. By the way, I also did Rituxan maintenance for 1 year, every 60 days, and upon relapse did RCHOP 6 cycles. Finished in mid Feb. and am in CR, yipeee! Doctors have really no idea about prognosis, could be cured, could recur, they just don't know as so rare.

Sorry ranted for so long on your thread. Just wanted to share and hopefully make you feel not alone.

Blessings to you,
Leslie

Hi Leslie
You didnt rant at all! Must be difficult for you, as if LLS doesnt have information where do you go! At least for SLL I can find info, just finding others with it too is the hard part. I believe SLL is 5% of all NHL, yours must be less than 1%.

Happy for you to be in CR! Hope it lasts a very long time. I hope for a long span before recurrence. That is the thing with SLL it is incurable and eventually will do its thing unless I die of something else first, and you never know, right. BTW I am 55, was diagnosed at 51.

AS I search around the web, will keep an eye out for your type of NHL and be sure to share with you!

Keep feeling well!

yesyes2

Mustang67 said:

Hi Leslie
You didnt rant at all! Must be difficult for you, as if LLS doesnt have information where do you go! At least for SLL I can find info, just finding others with it too is the hard part. I believe SLL is 5% of all NHL, yours must be less than 1%.

Happy for you to be in CR! Hope it lasts a very long time. I hope for a long span before recurrence. That is the thing with SLL it is incurable and eventually will do its thing unless I die of something else first, and you never know, right. BTW I am 55, was diagnosed at 51.

AS I search around the web, will keep an eye out for your type of NHL and be sure to share with you!

Keep feeling well!

Hello
You must be really good with math. There are about 200 cases a year of LPD, read somewhere that it's between .5% and 1% of all NHL, but these were old figures. I did find 2 journal reports, from Japan and Italy, but thats it. So yes it is very frustrating. The Japanese report said patients died but they really didn't understand why. So probably same as you, if something else doesn't kill you first..............!

If I hear of anyone with SLL I'll let you know.

Good luck and good health.