Follicular lymphoma grade 1-2 stage 4 rituximab+bendamustine

Options
duckhead
duckhead Member Posts: 19 Member

I am 60 years old and just completed 5 cycles of Rituximab+ bendamustine with one more cycle to go. I was diagnosed with grade 1-2, stage 4 follicular lymphoma with bone marrow involvement in November of 2021. 

Up until now, I have not been doing any research on the internet for fear of information overload and also realizing others’ experience and prognosis can be different. However, as I approach the end of my treatment, I am becoming more anxious about the results of my treatment and the prognosis going forward. 

My final chemo infusion may well be delayed as my blood count ( esp WBC and platelet) are borderline acceptable. I may either have to undergo blood transfusion or my last chemo scheduled for the end of this month may have to be delayed. My bendamustine dosage was already reduced as a compromise during my chemo infusion just a week ago.

I am curious to learn from those who are similarly situated (age, diagnosis, etc) and specifically from those who are able to achieve complete remission following the rituximab+ bendamustine routine. And relapses? In general, how long a remission period can one expect before a relapse? And is Rituximab maintenance necessary or helpful in order to delay a relapse? I know these are questions better answered by my treating oncologist before my final chemo infusion but I would be interested to hear from others who have already been there and are similarly situated. 

Thanks in advance for any response. I just started reading some of the postings on this site and find them to be very informative, helpful and educational. 

Peter

Comments

  • PeprmntPat55
    PeprmntPat55 Member Posts: 70 Member
    Options

    Hello Duckhead!

    I was diagnosed with Follicular Lymphoma at age 60 also. Stage 3, no bone marrow or organ involvement. I was symptomatic just didn't know it. I had the same treatment, R & B, 6 cycles. I was declared NED after four treatments but of course continued. I opted for the Rituxan maintenance program, 1 infusion every three months I think it was. Took me about 2 years to complete. My last treatment was end of January 2019. Thankfully at this point I am still in remission. My onco always says how well I responded to treatment, and he is convinced that maintenance helps prolong remission but there are different schools of thought on that. But I have heard of many, some on this site, who have had years and years of remission.

    Wishing you the very best as you continue treatment and I'm so happy you found this site!


    Pat

  • duckhead
    duckhead Member Posts: 19 Member
    Options

    Pat, thank you for your comment. I really appreciate hearing your experience. Congrats on the NED and still being in remission.

    Went to my appointment today for more blood work ( 1 week following my 5th chemo) and possible blood transfusion but my numbers are holding steady and not deteriorating. Thus, the nurse practitioner said no blood transfusion today and my last & 6th chemo is still scheduled for the end of this month.

    I plan to discuss the follow-on maintenance program with my oncologist and other options provided my scan shows good results. I was told about 6-8 weeks after my final chemo, I will be undergoing a scan. I am hopeful and look forward to seeing a positive outcome.

    Thanks again, Pat, for your response. I am glad I found this site and the support it provides. Take care and stay well !

    Peter

  • svence24
    svence24 Member Posts: 11 Member
    Options

    Hello Duckhead, I don’t have much to share on your subject but your treatment plan is what I started in early June. My NHL is bone marrow only, but I’m hoping you could share your side effects with your 2nd - 5th cycle. I have had a rough time with the first and wonder if it gets a bit quicker to recover? All I can offer is prayers that your results are solid!

    Svence24

  • duckhead
    duckhead Member Posts: 19 Member
    Options

    Svence24, please see my posts under the “Rituximab alone…..” thread on my experience with the BR chemo regimen. I should add here that I had a severe loss of appetite after the first chemo session and lasted about 2 weeks before I regained a little appetite back. Also very slight fatigue at times. Same with cycle 2 but the appetite loss wasn’t as bad as the first one. I never had nausea throughout my treatment. Again, as stated in the other thread, other than light itching, I felt like a normal person from cycle 3 through cycle 6 with quite vibrant energy and great appetite even though my blood counts ( WBC, RBC, hemoglobin, platelets, neutrophils, etc) were low and still are.

  • svence24
    svence24 Member Posts: 11 Member
    Options

    Thanks duckhead, I will look into the post. My 2nd cycle is in a week so I’m trying to keep it all in perspective. As of this week the main issues are heart and palpitations.