SLL (small lymphocytic lymphoma)

momforlife
momforlife Member Posts: 6
edited March 2014 in Lymphoma (Hodgkin and Non-Hodgkin) #1
Hi- I have just been diagnosed with SLL and have been told it's best to wait and watch. Has anyone had experience with this NH lymphoma? Have you tried anything other than conventional treatments? I would especially love to hear long-term survival stories. I am young for this disease- 43- so I'm trying to understand how/if the survival rates apply to me. Thanks!

Comments

  • kb64
    kb64 Member Posts: 6
    #2
    SLL for 10 yrs
    I was diagnosed in 2001 with Stage IV SLL. I did 6 months of treatment with cytoxan, fludarabine and rituxan. Then I did rituxan every 6 months for 2 yrs. I have been in remission for 9 yrs and have just recently found new lymph nodes. I will be seeing an oncologist in a week at the simon cancer center in Indianpolis. I was 37 when diagnosed and am now 47 yrs old.
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #3
    kb64 said:

    SLL for 10 yrs
    I was diagnosed in 2001 with Stage IV SLL. I did 6 months of treatment with cytoxan, fludarabine and rituxan. Then I did rituxan every 6 months for 2 yrs. I have been in remission for 9 yrs and have just recently found new lymph nodes. I will be seeing an oncologist in a week at the simon cancer center in Indianpolis. I was 37 when diagnosed and am now 47 yrs old.

    May I ask...
    Hi kb64,
    May I ask how the 2 year rituxan maint went for you? I just had my first rituxan maint infusion on Feb 14th. My plan is set up for one infusion every other month for 2 years. I don't have the same cancer as you...mine is follicular NHL stage3-grade2-typeA...no bone involvement. It pleased me greatly to read you stayed in remission for 9 years, however, our cancers are different, so I don't know if mine will respond as well as yours did. I've not read anything that suggests as long of remission as you experienced, and my doctor even said a 2 to 3 year remission for FNHL would be considered great. Soooo...I'm thinkin with his comment, I might not get as long of a run as you did, but hey...time will tell and we can only hope! Anyways...I'm always looking for information how others did after receiving the 2 year plan of R maint, so if you have any info you'd like to share, it would be greatly appreciated. Take care, and "Welcome" to this wonderful group.
    Love...Sue
    (FNHL-2-3A-6/10)
  • kb64
    kb64 Member Posts: 6
    #4
    allmost60 said:

    May I ask...
    Hi kb64,
    May I ask how the 2 year rituxan maint went for you? I just had my first rituxan maint infusion on Feb 14th. My plan is set up for one infusion every other month for 2 years. I don't have the same cancer as you...mine is follicular NHL stage3-grade2-typeA...no bone involvement. It pleased me greatly to read you stayed in remission for 9 years, however, our cancers are different, so I don't know if mine will respond as well as yours did. I've not read anything that suggests as long of remission as you experienced, and my doctor even said a 2 to 3 year remission for FNHL would be considered great. Soooo...I'm thinkin with his comment, I might not get as long of a run as you did, but hey...time will tell and we can only hope! Anyways...I'm always looking for information how others did after receiving the 2 year plan of R maint, so if you have any info you'd like to share, it would be greatly appreciated. Take care, and "Welcome" to this wonderful group.
    Love...Sue
    (FNHL-2-3A-6/10)

    rituxan maintenance
    Hi Sue, I did rituxan every 6 months for 2 yrs. not monthly. I didnt even realize they did it that frequently. But alot has changed over the last 10 yrs also. Staying positive is the best advice I can give as hard as that is at times. I was given a 5 to 10 yr prognosis for survival, so that being said being in remission the last 9 1/2 yrs aint bad. Every year the drugs get better and better. I had no problems with the rituxan at all. It just made for very long days when you get it due to how slow that have to increase the rate etc. Good luck with everything and God bless
  • allmost60
    allmost60 Member Posts: 3,178 Member
    #5
    kb64 said:

    rituxan maintenance
    Hi Sue, I did rituxan every 6 months for 2 yrs. not monthly. I didnt even realize they did it that frequently. But alot has changed over the last 10 yrs also. Staying positive is the best advice I can give as hard as that is at times. I was given a 5 to 10 yr prognosis for survival, so that being said being in remission the last 9 1/2 yrs aint bad. Every year the drugs get better and better. I had no problems with the rituxan at all. It just made for very long days when you get it due to how slow that have to increase the rate etc. Good luck with everything and God bless

    Thanks
    Your right about drugs getting better and better each year, and so far I've not heard anything too alarming with Rituxan. My treatment plan is every other month..not once a month....I probably didn't word it right in my prior post...good old "chemo brain"...ha! Yes...the 4 hour infusion is a pain in the toosh, but the pre-meds always knock me out, so the time goes by fast when your sleeping..ha! Thank you for getting back to me.
    Take care.. Love,Sue (FNHL-2-3A-6/10)

Discussion Boards