Just wondering if anyone on V & O has experienced continued bulky under arm Lymph nodes during treatment?
I am just starting cycle 4 and my under arm nodes have not decreased in size since treatment commenced and are still slightly uncomfortable. My neck and groin area have definitely improved.
Bloods are now all within range.......
Any help appreciated.
Hi Fezzer, I am about to start cycle 3 in two weeks. I definitely have some more stubborn nodes. Some melted away, some got smaller but have stayed that way and some seem to be the same. The reduction almost always seems to happen "overnight". Have you discussed it with your doctor? Remember it's not just the O that helps with the "shrinkage" but also the V so there is still plenty of time for more shrinking.
Petra ❤
Thank you Poodle2, that is helpful. Sounds like you are having a similar experience.I have discussed this with my Doc and he is organising a scan at the end of this cycle.
As you say, there is plenty of time left for shrinkage.
Hope V and O gives you a good long remission.
My hubby's blood numbers have always been "good" but before treatment he had some very large nodes. He is 3 months into V+O and doing pretty great. We recently had a conversation with the doctor that mentioned some nodes not shrinking "back to normal". They may have suffered damage by being so filled with CLL cells that they are like "worn out balloons" and cannot "snap back". We've seen remarkable improvement since Day 1; if there are "scars", we are still ahead.
Thank you Ladylin.I have read so many times of V and O patients ............nodes melting away quite quickly and was concerned some of mine were not.
If others are experiencing a similar condition with stubborn nodes, then this is a little more comforting.
May your husband prove a great result from this treatment.
Hi Fezzer,
My lymph nodes did not melt away either. I started V on March 28th of this year. For a few months, my lymph nodes didn't budge even though my labs were improving. Finally in the past two months or so, my lymph nodes have decreased substantially in size. They are still palpable, just much smaller. When I was on acalabrutinib, my nodes were unpalpable within a couple weeks and stayed that way for four years until it stopped working for me. I was expecting the same quick response with V, but that obviously was not the case for me. I am sure you will see a reduction in your nodes as well. It seems to take a little longer for some of us. Wishing you continued normal blood results and a reduction in your nodes shortly. Keep us posted on your progress.
All the best,
Nan
My experience with ibrutinib was similar to Nan's. After 3 months on ibrutinib & rituxan for SLL, my lymph nodes had shrunk by 50%. The enlarged nodes were internal so it took a CT scan to check them out. Eight years later, I'm still taking ibrutinib. I see my specialist twice a year. My doctor checks my annual CT scan versus the previous scan. I don't think my nodes returned to "normal" size --- probably a bit larger.
Thank you for your input Nan. It looks like I shall need to wait a little longer for the treatment to bring about a shrinkage in my lymph nodes.Looks like you have experienced a number of treatment's and I do wish you well with your current program and any further regimes, should you require them.
I am 6 months in and also the same experience. Some nodes went away quick but others just shrank a little and seem stuck at the same size last 4 months. The V did clear my blood in The first week. I’m a little concerned that I’ll never reach MRD if I have all this lymph involvement.
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