Enlarged under arm lymph nodes during treatment - CLL Support

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Enlarged under arm lymph nodes during treatment

fezzerUK profile image
12 Replies

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.

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fezzerUK profile image
fezzerUK
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12 Replies
Poodle2 profile image
Poodle2

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 ❤

fezzerUK profile image
fezzerUK in reply toPoodle2

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.

Poodle2 profile image
Poodle2 in reply tofezzerUK

Same to you, same to you 🙏🏻🙏🏻🙏🏻

Ladylin151 profile image
Ladylin151

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.

fezzerUK profile image
fezzerUK in reply toLadylin151

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.

nvp815 profile image
nvp815

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

LynnB1947 profile image
LynnB1947 in reply tonvp815

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.

fezzerUK profile image
fezzerUK in reply toLynnB1947

That's helpful LynnB1947. Long may Ibrutinib continue it's task for you.

fezzerUK profile image
fezzerUK in reply tonvp815

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.

nvp815 profile image
nvp815 in reply tofezzerUK

Thanks Fezzer!

flipperj profile image
flipperj

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.

fezzerUK profile image
fezzerUK in reply toflipperj

Yes, same here. My WBC fell from 110 down to 1.8 within the first week of V & O........amazing drugs.

I understand your concern.....I have the same. After cycle 6, I shall hopefully get a scan.

Hoping you do reach uMRD and thanks.

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