Acalabrutinib Dr is suggesting adding Obinutuzumab would like to know more about it. The Acalabrutinib is my 3rd BTK inhibitors I started with Ibrutinib and had many side effects including afib which lead to an ablation procedure Then LOXO 305 which caused me serious liver problems recently all my red counts went drastically low along with platelets and my IGG I immediately had ivig and 2 blood transfusions and started on the acalibrutinib they now want to add the Obinutuzumab due to low red count. I would like to know about side effects I’ve been having terrible headaches and shortness of breath. My heart is pounding in my head. Caffeine helps for a bit. I have had CLL for 20+ years with high white count but never low red count. The red count was always high normal.
Would like any and all info about this combination Thank You
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The sickest I have ever been in ten years of treatments were on the two drugs you mention. Realize everyone is different but I have had like 9 drugs over the ten years, some of them multiple times, and the “Brutus and their combo Binituzimabs caused me so much pain and sickness, i ultimately ended up with hemolytic anemia and an HgB of 5 and nearly died. Of courses a few weeks before this I was treated for a very serious cardiac arrhythmia. After 20 months of this horse pistoo, I got cleaned up for a few weeks and started Venetoclax. I am 19 months in, nearly side effect free, and come July I will be off the drugs happily!!
Hello, so right now for 19 months you have done venetoclax only? I have only had Ibrutinib, but it gave me a fib and I already had a ventricular arrhythmia that had been ablated, so I went off it after a year. Now am going to start therapy again and they want to use Obinutuzumab and Venetoclax. I am leaning to only do Venetoclax because I feel less drugs the better and was looking for actual people that took venetoclax by itself to see how they did.
I really can’t comment on Obinituzumab, I have had Rituxan 3 times now and it has worked really great. I had Ofatumumab and was the sickest of my life on that drug.
Now, after my 21st month on Venetoclax with six doses of Rituxan at the start, I can say this has been the most successful of my 10 years in treatment. My only advice to anyone who has had any side effects with Ibrutinib is to get rid of it or any of its derivative forms. Not only is it 3x as expensive as Venetoclax, the side effects it caused me to have let to cardiac issues and a bunch of other things which culminated in a very near fatal case of hemolytic anemia. One month after that I started Venetoclax and I have had a smooth sale. We have set the date for my bone marrow biopsy and I am planning to stop therapy on August 12th.
I hope this helps. You can direct message me on Facebook if you’d like, I am happy to talk any time.
Thank you for your reply I was just wondering because reading other peoples posts I don't feel like i need the obinabutimab, I don't know how to spell it, and Venclexta really just like to do the Venclexta monotherapy because to me less drugs is better for people. I feel like O plus V is their protocol but it seems like most people that need the O infusions have a lot of lymph node involvement and large spleens and I don't have any of that. I did IB for one year. It increased my blood pressure I was tired all the time so after a few months went to two pills a day, then to one pill a day I was still tired all the time and it started giving me a fib so they took me off of it. I already had a ventricular arrhythmia which I had ablated two years before I started that drug so I didn't really want to start having heart problems again. I am hoping to just do Venclexta alone and was just wondering how people who did it alone did. it's such a fast working drug I would just think I could get by with it. I guess I can go on there and ask the community I just saw your post and thought you were on Venclexta mono therapy, But sounds more like you have gone through the mill. Thank you for responding. Janet
The main benefit provided by obinutuzumab/Gazyva is more rapid removal of the tumour burden, so it reduces the risk of Tumour Lysis Syndrome (which is not an issue if you've been pretreated). It also gets you to uMRD faster. Due to obinutuzumab remaing in circulation for up to a year after the last infusion, a downside is that you are unlikely to make antibodies in response to vaccinations until after then. There's also the increased risk of exposure to the coronavirus with all the additional hospital trips for the 9 infusions.
I guess that's something I'm not understanding they say the O Works fast and reduces the tumor burden, but then the doctor said I might have to go in the hospital to start Venclexta because it works so fast that it Has to be ramped up, so I'm confused if Venclexta by itself works so fast I don't understand the need for both. I have read people's posts on the site for a couple hours today that we're doing the V plus O, and it seems about half of them have had such harsh reactions to it, i'm just trying to decide if I want to do them both or just the one. I am just sick of being sick so it's hard for me to even start a therapy with the thought that I'm going to be sick, heart problems, and diabetes, bone spurs and spinal cord surgeries. I have serious medical fatigue. They wanted to start it now I told them no I will think about starting it in the fall.
Venetoclax kills CLL cells in the blood quickly but is slower penetrating into the bone marrow and the nodes, including the spleen. There are also advantages of a double hit with drugs working differently, as that should lessen the chances of resistance developing. That should improve your chances of using the same effective combination again next time.
While I appreciate your reasons for not having yet more medical treatment, I would strongly recommend that you do not delay beginning treatment if your medical team recommends starting. Before you defer for 6 months, please reassure yourself that you are still highly likely to be within the optimum treatment window later and be prepared to begin earlier if necessary. From personal experience, if you fritter away your buffer in platelets and haemoglobin so that you are at increased risk of needing transfusions, then you'll likely have a tougher time getting through treatment. You will also go through your lowest period of reduced immunity, before your bone marrow recovers, during your cold and flu season. For reasons beyond my control, (waiting for my clinical trial to come off hold and then waiting another month for confirmation I met the trial acceptance), I consider that I missed my optimum starting time and ended up having a rough couple of months initially.
Thank you, I have never had low platelets or hemoglobin. About all of my labs are always in the middle of the chart, but WBC which is 140,000 currently and Lymphocytes 90, and should be 24-44 on lab chart, Segmented Neutrophils at 7 chart is 41-77 optimal. Absolute Neutrophil is 9.81, chart value is 1.8-7.0 I have had CLL for 17 years, del 11Q, 13Q, and CD38 positive. the only new deletion I had last month was del 6, which I looked up and this seems to be rare, with not a lot of info on.
But they didn't know about the 6Q when they wanted to start treatment. The only symptom I really have is fatigue, but I think that comes more from my heart arrhythmia and diabetes. I had worse fatigue when I was on IB for that year. I don't think I could be doing that bad, I did have covid in January and I seemed to do better than a lot of people, I didn't even know I had it other than off tasting food and mild sore throat/cough, and I am not vaccinated. My daughter said I should so a test since I had one here, and I was suprised I had it.
I have never had vaccines, not even childhood ones. I am 64 and do wonder about the getting treatment before even worse health though, but then I read on here about people having more issues with their diabetes and blood pressure on the O, so its just hard to decide.
Acquainting yourself with the reasons for starting treatment healthunlocked.com/cllsuppo... will give you some reassurance with regard to how much you can delay starting treatment. With 11q del, you are more likely to have bulky nodes, so tumour burden is likely to be the reason to start treatment. Swelling nodes larger than 100mm/4 inches in the largest dimension, a very swollen spleen or a lymphocyte doubling time under 6 months might be why treatment was recommended, but ask! (By the way, ignore the white blood cell percentages and just check the absolutes, which, by the way, are fine).
I'm glad you mentioned your lack of vaccinations. Given pneumonia is a common cause of death when we have CLL and it's a common occurrence during treatment, use the time to at least get your pneumonia vaccinations done. See:
The dual agent therapies are best, I think. I think Rituxan plus V for me really made it work. I look at the infusion therapy as the prep, what really opens you up and gets you ready and then you can take the pills and the drugs will get directly onto the receptor sites and do their things. I had six treatments of R over 5 1/2 months to start along with V. Personally I think Obinituzumab and Ofatumumab are much stronger than R, certainly they were engineered after. When I had Ofa, I had diarrhea for 8 months, I was in bed on my back most every day. I had Pneumonitis so bad I couldn’t breath, they had to put me into the hospital three times to get oxygen. I was on it from August to February and then the doc said enough, no more clinical trial.
Rituxan was my first treatment, I had it again in 2016 alone, and then in 2018 I started Ib, for about 12 months then went on ACala for maybe 7 months or so, the dates disappear in my mind. I had arrhythmia so bad my entire right side from shoulder to toes would go numb. Finally we said to hell with it and within a few months everything had manifested in hemolytic anemia caused primarily by getting too much IVIG too fast. Its odd they use it to correct anemia but it was also cause it as well!
I’d highly recommend asking your guy to consider Rituxan plus Venetoclax, I have mirrored a Dana Farber trial which I couldn’t get into for some other reasons, but my oncologist is close to that trial so he has me running parallel and it is going very very well.
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