Just a little update :)

[jijic]

Hi everyone! Not to get into politics, but today sure does feel like the dawning of a new era (especially given the gorgeous weather here in Berlin!)

I just wanted to share an update on my V+O progress. As you know, I started treatment last June. I had a rough first month, but since then my numbers have gotten better and better and, as of just before Christmas, are ALL within normal range! I completed the Obinutuzumab in October, and was finally taken off Allopurinol and antibiotics in December (and immediately lost 4 of the kilos I gained, though it's hard to say if it was a side effect or just the result of all the cheese I ate around the holidays).

I'm still at 400mg of Venetoclax daily, with zero known side effects. I do have some musculoskeletal pain that I didn't have before, which is listed as a potential effect, but my doctor thinks it's more related to home office working than the meds. Shrug.

The one bad thing, and I'd love to hear from others on this, is that my doc says there's no point in getting the COVID vaccine until 6 months post finishing the Obi (which for me is April). Has anyone else heard that? Something to do with CD20, I think.

[SofiaDeo Administrator]

Yes, the American Society of Hematology recommends clinicians take into account any treatment that may impact antibody formation. The recommendation specifically listed anti-CD20 Tx like obinutuzumab. And the recommendation of 6 months came from studies showing Zoster vaccines didn't give much response up to 6 months post treatment. If you can test T cell levels, or immune globulin fractions, after the 6 months to see if your body is making these, the Covid vaccine has a higher chance of success.

hematology.org/covid-19/ash...

[jijic in reply to SofiaDeo]

Thank you for the details! My doctor didn't give me that extra info

[AussieNeil Partner Administrator]

Good news on your response. I too had occasional, quite painful joint pain in my knees and hips, on Acalabrutinib+Venetoclax after finishing Obinutuzumab. It made sitting and standing painful at times, but generally faded after going for a walk.

As SofiaDeo noted, anti-CD20 targeted therapies (Rituximab, Obinutuzumab, Ofatumumab, etc), do blunt our response to vaccinations for typically 6 months after finishing infusion treatments. That's because by the time we've had our 24 weeks of infusions, there are typically no remaining B-cells circulating in our blood, so the anti-CD20 drug remains in circulation, gradually disappearing as it attaches to newly made B-cells. It can take 6 to 12 months to clear, during which time, you won't have any B-cells responding to infections or vaccinations to mature into antibody/immunoglobulin making plasma cells.

Anti-CD20 treatments are also associated with a risk of Late Onset Neutropenia for up to a year after finishing the infusions, more so if you have needed G-CSF injections to boost your neutrophil count during that infusion period. Your neutrophil count can plummet without warning for a while, so be careful with your diet and general risk of exposure to bacteria and fungi.

Neil

[jijic in reply to AussieNeil]

I became neutropenic in month 6, but it turned around very quickly somehow! I'll continue to be careful, although I've started eating sushi again.

[HopeME in reply to jijic]

Be careful of the late onset neutropenia Neil mentions. I had chemo with Rituximab and my blood counts returned to normal, nodes shrunk, etc. Then almost 12 months after treatment I went to see my new CLL Specialist and a routine blood test showed my neuts had fallen to zero. He became very concerned and had me go across the hall that day to get a shot. G-CSF I assume? He also gave me some pills to take for about four days. Again, I forget what they were. Sorry. This all occurred on a Thursday. He tested my blood again on Monday and all was good. I told him I felt well why the concern? He explained it was late onset neutropenia and my body had become extremely vulnerable to infection. I still don’t eat sushi ☹️.

Best

Mark

[jijic in reply to HopeME]

Thanks - I will! I do bloods every two months just to be safe anyway.

[stevesmith1964]

HiI am on Obinutuzumab , 3 cycles done. Having my vaccine 4 days before cycle 4 as advised by my haematology oncologist.

I will be testing for covid Neutralising antibodies 14 day later and then every 2 weeks.

Steve

[Flute117]

I just completed my 6th and final Obinutuzumab infusion. I will continue on Venclexta for several more months. My specialist wants me to wait only a minimum of 6 WEEKS before getting the vaccine. He will do antibody tests following my second dose. The number of cases in N.J. and particularly my county are very high. And although my husband and I only go to medical appointments, there is still potential risk of exposure there.

He feels that any protection will be better than none. I will continue to be as careful as I have been post-vaccine until the risk of community spread abates.

That being said, with the number of eligible people far outnumbering the amount of doses, it is doubtful I will get the vaccine for several more months. My doc also prefers I wait until he can provide the vaccine at the cancer center so I don’t risk more exposure going to another indoor facility. No indication when he will have it. Drive through sites are extremely hard to find.

Will post an update when I get my vaccine and the results of antibody testing.

[NaturalWaze]

My doctor (Lamanna) at first said 6 months after my last Obinutuzimab but has changed it to at least 3 months after. My last Obinutuzimab is in April. By July, maybe she will have more data from patients to have a better idea...

[jijic in reply to NaturalWaze]

Huh...well if Dr. Lamanna says 3 months, I can get behind that! I'm already four months past, so if the vaccine became available to me today, I would do it, but it's seeming April is most likely for availability here anyway. Unfortunately, being under 40 with only one pre-existing condition puts me pretty far down the German list.