Doctor wants to start Venetoclax today but recent blood work shows evidence of AIHA but Doctor still says start Ven

[Palmetto]

shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of not only the anemia but also the CLL

[AussieNeil Administrator]

Did you discuss this scenario with Dr Matthew Davids?

[Palmetto in reply to AussieNeil]

Update. Doctor Called early this morning said he had been thinking about it all night and now decision is will have Gazyva first for 3 weeks then start the Ven. I am happy with that outcome. When we had the consult with Dr. David’s he basically said there’s no way to predict the auto immune anemia so that wasn’t addressed he said there’s no way to prevent it so in my mind the Rituxan would have done the job but I’m just as happy with the Gazyva at least I think we’re in the right direction now. Thank you and Jeff as always for your great concern and speedy responses.Thankfully I didn’t give up until the doctor checked the haptoglobin and LDH levels as we never would’ve known it was the autoimmune hemolytic anemia right now without that panel as he would have started Venclexta today. I just saw the same pattern developing that I saw last year when he had it and I had to convince the doctor this is what was going on

[AussieNeil Administrator in reply to Palmetto]

Good to read your update!Gazyva/Obinutuzumab is a second generation version of Rituximab/Rituxan/Mabthera, which appears to be more effective than Rituxan. That's more likely to be the case for your husband, given they work a bit differently and he has previously had Rituxan treatment.

Neil

[cajunjeff in reply to Palmetto]

This is a great example of how we can have a very good doctor who knows more than us, yet still not follow his advice blindly without asking questions. Being an informed patient (or caretaker in this case) helps us find the right questions to ask. If we have picked the right cll specialist, they should have no issue answering our questions.

Its also a good example of how being proactive can help us get a better outcome. I think your question was a good one. The gazyva should treat both his AIHA and his cll.

[cajunjeff]

I think it is generally true that the strategy with AIHA triggered by Cll is to treat the AIHA first and then treat the Cll, which is likely the underlying cause of the AIHA.

I would think the exact moment in time to treat Cll when AIHA is present depends on a lot of variables and your doctor’s instincts and experience in when to treat.

You are asking a good question, but I doubt anyone on here could answer your question with such limited information.

I think this question is best put to your doctor, and it’s a good question to ask. If you are not convinced by his answer, then I would seek a second opinion. If you have a true Cll specialist who is well respected, I think he will have done the analysis for you. Good luck.

[SofiaDeo]

If the doc thought the AIHA was being caused by the CLL, that might have been the rationale. It was so in my case, anyway. Treating the CLL stopped the hemolytic anemia by dumping out my spleen. But it seems you have decided on the best of both choices!👍

[Palmetto]

Thanks Sofia. I just felt the pattern was the AIHA again along with the CLL so actually now the treatment with Gazyva should help with both! I was unsure about the Venclexta alone being able to take care of both. Gazyva was his very first treatment for CLL back in 2016 and he tolerated it very well without any side effects other than low white counts brought on because he was given Leukeran along with it. Glad that regimen is no longer used. Hope all is well with you and your AIHA does not return. Take care.

[mk2045]

I've had two episodes of AIHA. The first was really serious and I ended up in the hospital with a hemoglobin of 5.2 and 3 transfusions. I was treated with Rituxan along with prednisone. I had a very deep response to the Rituxan so I sort of returned to w&w. My WBC and ALC started creeping up again and we knew I'd need treatment soon. I was hoping for the G+V, but I was hit with AIHA once again. It was caught more quickly, thankfully, but my doctor at Mayo thought that after we tamped it back with Rituxan & pred that I should be on a more long term CLL treatment. So, I'm at the end of my first month of Calquence, and so far doing very well. I wish you the best!

[Palmetto in reply to mk2045]

Good to hear that you are doing well