Hi all,
I’m currently having Obinutusamab and Venetoclax treatment for CLL and having major problems raising my haemaglobin levels.
I’ve had 16 pints of blood transfused in the last 12 weeks which feels excessive. Has anyone else had a similar experience and any explanation from their haematologist?
Thanks
alan
Hello there, I’m so so sorry that does sound excessive. I have no answers but many questions.
I have had CLL for 15yrs 6mos, I was in Wait & Watch for 13yrs 8mos & could only tolerate 13 months of Zanubrutinib a BTK Inhibitor.
I got Pleurisy 13 days on treatment, went to the ER with Chestpain. I seen my Oncologist on day 14 & a Pulmonologist on day 15. I even asked the Pulmonologist for antibiotics & steroids & he said that he did not feel comfortable ordering it but instead offered me Tylenol #3 for my Chestpain. Both doctors had my ER report showing Pleurisy but neither chose to treat me.
The Chestpain was 10X worst by now so 48hrs later I am back to the ER by Ambulance this time & the Pleurisy developed into Left Pleural Effusion, Pneumonia vs Aetelectasis. I only got Steroids then. I walked around for 2.5 months later in agony until my chestpain necessitated a 3rd ER Visit in 3 months. The wonderful ER doctor witnessed the tightness of my chest & ordered Muscle Relaxants but this CT Scan was read as normal.
After 3 months of begging for antibiotics, my boss got me some from her doctor. My boss said I was an undocumented employee of hers, meanwhile I have VIP Federal Aetna Insurance. I then finally got better but I had to reduce the dosage of Zanubrutinib to 1/4 since that first 2 weeks of treatment. (But I had Acalabrutinib 1/2 dose for 10.5 weeks)
I got to my CLL Specialist before I got any competent care. She had her own Cardiologist & Pulmonologist check me out. When they felt I was stable, we increased it to 1/2 dosage & I got another infection with chestpain 1 week later. This time I got prompt antibiotic therapy & healed quickly.
I started April 2023, ER visits May-July & CLL Specialist by August. We increased to 1/2 dose by the end of October & treated for infection 1 week later in November. My lab numbers were amazing by now.
But by April I had Left Rib pain, trouble breathing & horrible bone pain. I was walking with a Walker by then. April’s CT Scan showed signs of CHF. I weaned down to 1/4 dose in May for 3 weeks & stopped May 30th because while celebrating my Dad’s 90th Birthday I had chestpain the whole time. He was totally with it, taking no meds & walking without any assistance, GOD definitely has a sense of humor🤦🏽♀️
I stopped May 30th & went through horrible withdrawal for about 10 days. They call them Rigors, I couldn’t eat because of this metallic taste in my mouth. I pushed fluids by mouth & my urine was still orange.
June 11th bloodwork had all my Liver Enzymes elevated but everything normalized & ALC/WBC/Hgb & Plts are holding. I completed a 90 day 3X per week for 1hr Cardio Rehab program that I pushed my Cardiologist to order & no more chestpain.
My bone pain is improving but my 13yr s/p Left Hip Fracture did progress to bone on bone. I do not candy coat none of this. Am I grateful yes but it was still hell…
O&V is suppose to be my next treatment but I doubt it… I am considered in a ‘Medication Break’ phase & my CLL Specialist thinks that I might last 3yrs here
Is this your 1st treatment, how long ago were you diagnosed with CLL, what were your starting labs & are you actively bleeding??? I pray that you are dealing with a CLL Specialist because that is mandatory!!! Prayers going up 🙏🏾🙏🏾🙏🏾
Hi Vera ,
Thanks for your reply sounds like you have had it tough, hope you’re feeling better now.
To answer your questions,…..
I was diagnosed in December 2020 and on W&W until Nov last year when my treatment started.
My white cell count was over 300 but treatment was driven by low haemaglobin which was 70..
I’m not bleeding at all, 2 units of blood take my readings from 70 to 80s but within a week I’m back down again.
Yes I’ve been under a haematologist from day 1.
Thanks again and best wishes to you.
Alan
Hi Alan,
I'm really sorry you're going thru this. It sounds exhausting—literally. I just saw your post from 3 months ago healthunlocked.com/cllsuppo... , in which you explained that you were starting V+O because of low haemaglobin. So it sounds like treatment may not have helped the HGB number and may have reduced it further. I wish I had good advice for you, but that post had a couple people who did: Skyshark and Poodle2 . Perhaps one or both could weigh in?
What do your doctors say? Are they intent on having you continue? Are you at the halfway point of Obin?
I sincerely hope you're feeling better soon. Hang in there.
Hi Alan,
Providing more information on your red blood cell related blood count changes from prior to starting treatment (including how rapidly your haemoglobin dropped) and locking your post should help you get more relevant, helpful supplies. See: healthunlocked.com/cllsuppo....
Do you know whether your consultant has checked for auto immune haemolytic anaemia (AIHA)? If you've had a Coombs or DAT test, what were the results?
How good were your platelet and neutrophil counts before starting treatment?
I'm not sure without further information whether your current reliance on transfusions is due to CLL bone marrow infiltration taking a while to respond to treatment - you did share that your very low haemoglobin count was why you needed to start and that commencing treatment was delayed, or whether you have AIHA or are perhaps very sensitive to the treatment drugs or possibly a combination of factors. How are you responding to treatment otherwise?
I needed a couple of packed red blood cell transfusions because my A+V+O treatment start was unfortunately delayed a couple of months and my haemoglobin was around 10.5, so still clear of the less than 10 trigger for starting treatment. It began recovering after my obinutuzumab infusions, but then stalled even while my red blood cell count moved into the normal range. When I raised this unexpected situation with my specialist, he determined that I needed an iron infusion. After that my haemoglobin improved to higher than it was before my CLL/SLL diagnosis.
I hope your patience with this is tiring situation is soon rewarded.
Neil
I had as a 3 rd therapy 9O% bone marrow infiltration was put on Venetoclax – hemoglobin was 5 but picked up after starting the drug– VO before. But the hemoglobin was always changing and they said this isn’t normal for CLL. When the bone marrow infiltration was down to less than 5 % another clone showed up Waldenström and my therapy was changed to Brukinsa (now for 2 months) and the hemoglobin is increasing again now to 9 . What I wanted to say is that anemia can have many different causes so I would rather question the hematologist.
hi, I don’t have the answers you seek, but I had 13 bags transfused in 12 weeks in recent months due to low hb, down to 4.1 at lowest point, I have now started treatment on V & O, (cycle 1) levels are at 11 and holding much better,
Hey Theplodder, I'm so sorry you are still dealing with this. I reached out last time you posted. 16 blood transfusions seems quite extreme. I agree with others, we probably need more information - have you been tested for AIHA? What are your CLL doctors saying? It is quite common to need blood transfusions if you start off with a low Hb and a heavy bone marrow infiltration but I guess you should see some improvements by now. My Hb was actually up and down, going down after each V increase during the ramp up but within a couple of days, there would be a slight increase and after the ramp up was done, it just went up...it seems this is usually the case for others as well so it seems a bit puzzling that you are still struggling with this. I would definitely want to know what's causing the anaemia. By now you should be able to start seeing improvements, the fact your Hb is still dipping down to low and therefore dangerous levels needs investigating. I was frustrated when my Hb dipped after each V dose increase and my specialist said I was just very sensitive to the drug...it did get better so that's what mattered. I really feel for you. I hope they will be able to tell you what's behind your ongoing anaemia. Please let us know once you know more. Stay strong, it has to get better at some point. Petra ❤️
P.S. I also had iron infusions - like Neil - and they also helped - although this was before I started treatment so my CLL needed addressing anyway.
Thanks all ( Poodle2 Jim-Boy mickimauser11 AussieNeil neurodervish CoachVera55 ) for your replies, apologies for my laziness in not replying individually but I’m also struggling with man flu!
Your answers are really helpful for my next meet with my haematologist, I admit to feeling quite ignorant, in that I don’t know if I have had a Coombs or DAT test or AIHA either. All questions I will raise at my next meeting! Any other useful questions please do fire them to me, thanks.
I’m two and a half months into a 12 months treatment plan, the initial view on my low HBG levels was due to the intensity of the treatment at the outset, however of late I’m hearing that my situation “is quite puzzling” which hasn’t filled me with confidence! I’m having blood tests every week and as a result am usually then booked in for another transfusion, as of a week ago my treatment has been paused and being reviewed on a weekly basis.
Thank you all again for your feedback, guidance and kind words of support, much appreciated. I’m the kind of person that usually just cracks on with things so I guess it’s what feels like a lack of progress that’s the frustration…. Well that and the fatigue!
Best wishes to you all.
Alan
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