V and O treatment and low Hemoglobin

[Dodger47]

My journey continues. I am hospitalized due to AIHA/CLL and Covid. Very low hemoglobin is the issue. Dr. decided it was time to treat the CLL and that would correct the AIHA. Hemoglobin was 3.4. Given high dose of prednisone, and started the Obi infusion. Got 5 blood transfusions and hemoglobin went up to 7.1. Last three days Venetoclax was added and got second Obi infusion. So this morning my hemoglobin was down to 5.1. Cannot figure out what is going on. Waiting to hear from the Doctors. Has anyone had this kind of experience or thoughts about what is happening. Getting a little frustrated and a bit nervous with all this uncertainty. Thanks for any thoughts.

[AussieNeil Partner Administrator]

You've a lot going on, what with COVID-19, AIHA and CLL. Presumably, the recurrence of your CLL means your bone marrow is somewhat infiltrated, but without information on trends in your platelet and neutrophil counts, let alone a bone marrow biopsy, that's conjecture. The V+O may also be suppressing your bone marrow to some extent.

I suspect you won't see a sustained improvement in your haemoglobin until your AIHA is brought under control and I hope that's very soon.

Neil

[Dodger47 in reply to AussieNeil]

Thanks AussieNeil. The Docs were in and decided on two transfusions and an IVIG infusion. From tests they believe I am producing new cells but the AIHA is back and too active. My platelet count has been steady around 66,000. I think I heard my neutrophils were at 81 percent, will try to get more info on that.

[AussieNeil Partner Administrator in reply to Dodger47]

Only use your neutrophil percentage to work out your absolute neutrophil count, which ideally should be at least 1,500 healthunlocked.com/cllsuppo... Percentages can be very misleading otherwise.

[Dodger47 in reply to AussieNeil]

Thank you for your post referencing neutrophils. I am very much in a learning mode and such explanations are so helpful as I try to understand the concepts. You can always be counted on for providing excellent resources.

[Skyshark]

You should have had 3 doses, 4 IV of Obin before starting Venetoclax.

The normal course for V+O is 12x four week cycles. 1st cycle 3x 1000mg doses (4 IV, first dose split 10%/90%) of Obin, one per week (days 1 - 10%, 2 - 90%, 8, 15) before starting 20mg Venetoclax (no Obin) at day 22, first day of week 4. Then 50mg Ven on day 1, week 1 of cycle 2, along with 4th dose of Obin. Then increasing to 100mg, 200mg, 400mg of Ven on days 8, 15, 22 of 2nd cycle. Cycles 3-6 IV of Obin on day 1 and 400mg Ven throughout. Cycles 7-12 400mg Ven throughout.

What you describe is more like the Ven + Rituximab protocol.

[Dodger47 in reply to Skyshark]

Thanks for the information. Am trying to take all this in and get more educated. New and complex so I appreciate your perspective and thoughts.

[SofiaDeo in reply to Skyshark]

Skyshark, I disagree; the protocol you have described is for the average patient. A patient with an acute AIHA, and also Covid such that they needed hospitalization, is not "average" at start of treatment. You aren't privy to Dodger47's chart and have no idea why the docs are doing a modification. IMO someone with an aggressive AIHA that the docs think is due to CLL, warrants a quicker clearing of tumor load/marrow in hopes of tamping the AIHA. Not to mention anything that Covid/post Covid is doing.

What one "should" do, is modify protocols as needed if the best interests of a patient calls for it. I didn't have ANY obinituzumab, just venetoclax, even though my specialist recommended V&O. You going to try to tell me I "should" have had V&O according to standard schedule, and what was done was concerning/the wrong thing?

It's one thing to comment along the lines of "ask your doc why the standard schedule is being modified, it's not usually done how you are doing it." Telling someone their doctor is wrong, is another.

[craterlake in reply to SofiaDeo]

i was thinking the same thing .when Skyshark started his reply with "you should have had "

[cajunjeff]

Dodger, I had a bad bout of AIHA myself, with a few blood transfusions as you describe. The first strategy they used to get it under control did not work and my AIHA worsened. The second strategy they tried did not work . Not only did I have a very bad reaction to rituxan, but my hemoglobin crashed further.

I started to despair a bit, but my nurse practitioner assured me that my doctor would figure it out. My third try to get my AIHA under control included ivig infusions and ofatumumab infusions. That did the trick for me, I have been on btk drugs since then that have kept my AIHA from recurring the last five years, fingers crossed.

I think my doc used his significant clinical experience to figure out what would work for me and kept trying until he got it right.

Insofar as anyone second guessing your doc and the sequence of your venetoclax and obinu, it is not at all unusual for doctors to vary doses and timing of our cll meds. You will not find the sequence of meds I took to correct my AIHA in any medical textbook. Your doctor is in the best position to sequence your meds.

I can empathize with you, having persistent AIHA is scary. Sorting it all out physically and mentally was made harder for me because AIHA in and of itself can be physically and mentally exhausting. It took about four months of trying this and trying that to get my AIHA under control. It might just be that you need more time before you see the results of the meds you are on. Good luck, I hope you see improvement soon.

[Dodger47 in reply to cajunjeff]

Thanks so much for your response. I am not sure anyone fully realizes what a tremendous, positive impact words of compassion, kindness, and support do in difficult times. I have been here in the hospital for 11 days..up and down…wrong kind of roller coaster.

I have experience with this CLL/AHIA but not nearly enough expertise. I am trying to learn more but it seems get thrown new curves and roadblocks .

Your kindness and the kindness of the rest of those on this forum is a real blessing. Thank you.

[Poodle2]

Gosh, this is a lot to deal with. I didn't have AIHA but had a low Hb to begin with when I started O+V. Mine went down after the first O infusion, I needed a blood transfusion. Then it started to recover but once I started V, it dipped again. I needed another blood transfusion. It continued dipping after each V increase. Once I was fully ramped up, things started to take a turn to better and after that my Hb continued going up and stayed like that since. My doctor told me it seemed I was very sensitive to the dose increases. Hopefully they can get it under control and you will be able to start seeing the benefits of the drugs. It's a lot to deal with at the beginning. Your body needs time to clear the bone marrow so it can start producing healthy blood cells. I really hope things get a bit easier for you soon. ❤️

[Dodger47 in reply to Poodle2]

Thanks for your response. It is always so helpful to hear the experiences of others who have been on this road. I am getting an IVIG infusion now and will get one more transfusion of blood. Hoping to see a turnaround soon. Again, thanks!

[tesoro5858 in reply to Dodger47]

I read Poodle's reply to you with interest. I am a treatment-naive CLLer but have had AIHA twice. Both times I was treated with obinutuzumab. My CLL expert said that if the AIHA becomes problematic, treating the CLL is the next step. So, I asked about which therapy he would recommend based on my prognostic indicators. I had planned on V & O when the time came. He commented that BTKi therapy is commonly used, and in his practice, has actually seen venetoclax induce AIHA in some patients as an undesirable adverse event whereas he has not seen that happen with BTKi therapy. I, of course, do not know if this is relevant at all to your case. I hope that you turn the corner and feel better soon!

[mickimauser11]

yes I was down to 5 too infiltration of bone marrow was 90% blood 13% I continued on Venetoclax and now I’m up to 10,7

[Wendy328]

I’m sorry I don’t have any advice for you but, I can offer a ((hug)) of support and offer prayers for your strength. I completed V&O in May and I was hospitalized 2 times for 3-4 days and I know how stressful it is. I hope your team can figure this out.

[Jwalsh]

I had AIHA in summer 2023. It did take 4-6 weeks before my hemoglobin went back to normal. We did a short course of steroids then started treatment with ven plus obin. That did the trick for me. I am also on a high dose of IVIG (40 g) which should help as well. Since you have low platelets as well as low hemoglobin I wonder if you are dealing with both AIHA and bone marrow that is full of CLL so it may take some extra time to recover. I’m so sorry you are going through this. AIHA was one of the hardest things I have experienced as a CLL patient. Luckily for me treatment worked and once my hemoglobin recovered I have been stable for over a year. Hope you are feeling better soon.

[Letarosella1966]

wishing you all the best.

[Jm954 Administrator]

Dodger, your poor bone marrow is under a lot of pressure with COVID, AIHA and CLL. It will all definitely improve but may take a little time and COVID will hold your recovery back unfortunately. It looks like your team are doing everything right so don't despair, be kind to yourself and conserve your low energy levels.

Please keep us updated, wishing you the best

Jackie

[Gardengirl44]

So sorry. Feel better. We are with you!!