I Have been kept on watch and wait by med insrance for 14 years. Recently met with new oncologist, who encourages one of two alternatives since my platelets are in 80 range. Can anyone with experience tell about these treatments, and side effects and effectiveness of procedures?
Option one: start zanibrutinib pill once daily, taken for rest of life. Stop pill CLL comes back.
Option two: obinituzumab IV treatments once a month, AND Venetoclax pill daily combination of IV and oral pill lasts one year fixed duration.
Anyone who has had experienc or kowledge of either treatment experience or with with both, please respond.
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tennis-dog
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Hi just to let you know I have had a different experience with a CLL specialist. I had platelets in that range for years with no treatment. Recently they dropped and I was offered treatment for ITP secondary to CLL when they fell below 30,,,no treatment for CLL as my other numbers are holding. I did have a bone marrow biopsy to determine ITP as opposed to infiltration in the marrow. My spleen is normal size. Perhaps your situation is different.
Thanks for your input, Yes my spleen is quite enlarged. I was in hospital last week having acute pancreatitis for fourth time this month when they decided gall bladder needed to come out. Anesthesia guy said they may give me transfusion before surgery if platelets were still that low. Platelets below thirty seems really low to me, but I am not a doctor.
These are close calls and I dont think anyone on here could advise you with such limited info. As a very general rule, V plus O might be better for someone young and healthy and without 17p. The pill a day zanu might be better for someone older or less healthy because one drug almost always has less risk of troublesome side effects than two drugs
I am on the two pill a day plan (calquence which is like zanu) and doing fine with it. I had bad side effects when I tried to add Venetoclax.
I dont think of it as taking a pill for life plan. It would actually be great to take a pill for cancer that works for life. I am just buying time with a drug that is keeping my cll under control, with relatively little harm to me, while I see how the new treatments pan out. A 70 yr old starting zanu today as a first treatment might not ever need a different drug. I might switch to another drug next year if a better line comes along
Ask your doc what he would do if he were you. If he is a young doc, ask him which option he would suggest for his father if he had your type cll. No person on here is in a better place than your doc to make the call and dont be shy about getting a second opinion if you are not sure what to do. Good luck to you. You have two excellent options, I doubt even your doc can say fro sure which one you will do better on. You just make the best choice you can.
Thank you very much cajunjeff, for your reply. I am older in my mid to late 70s, and my first thought when doc mentioned the options was I don't know how many years I have left so maybe go with option one so I can help heal the spleen with one pill. Doc mentioned that option (Zanubrutinib) can have side effect of bleeding which I assumed might mean internal bleeding. Not sure if he was implying stroke, but he did say some people tolerate this pill very well with few side effects which sounded good. Not sure totally immersing in option 2 for a calendar year at my age is desirable (especially if it could turn out to be my last year). So thank you for sharing your experience using one pill a day, and your reasoning based on age of patient. It seems to fit with my first reaction to the two options at my age. Glad both may be available if option one does not work, but it sounds like it has been a good place to start for you?
Hello tennis dog. While I still think your doc is in the best place to advise you, knowing now that you are in your mid 70s, I would go with the zanu, a btk drug. It might be the only cll drug you ever need.
Zanu, Venetoclax and Obinituzumab are all great cll drugs and reasonably tolerable for most folks. All of these drugs, alone or in combination, are likely to reduce your spleen size in short order. Btk drugs act very quickly in chasing cll cells from our nodes and organs.
But even though all the drugs are generally tolerable, each one comes with its own set of possible side effects. Taking two drugs at the same time doubles that risk. Neutropenia is the big risk that comes to mind with V plus O for me. I had bad neutropenia with my short time on venetoclax. The btk drugs probably carry a greater risk of cardio complications like afib, I would think Zanu is better than ibrutinib in that regard.
The reason I would be more inclined to go with a btk drug over V plus O for someone older is I think, on average, that btk monotherapy is gentler than V plus O combination therapy. If Zanu is your first treatment, it might be the only one you ever need. There are many treatment naive people more than ten yrs out on ibrutinib alone, that would put you in your mid 80s.
I also think of btk monotherapy as a nice placeholder therapy, an oral pill or 2 a day that controls our Cll until something even better than V plus O or zanu comes along. My guess is that if you push your doc a bit to help you decide, he will land on zanu.
It’s not the easiest call. Time limited therapy has its advantages for sure.
I presume you play tennis from your user name. I do too!!
I am not in a position to give advise regarding your treatment options but as Cajunjeff said, getting a second opinion is an option, if your doctor feels treatment can wait.
If you live in the US, the CLL Society has a program that gives you access to expert support. The link is:
I was 73 when I had to make a similar decision. I had Bendamustine/Rituximab IV treatment when I was 68 and the symptoms started again after a 3 1/2 year remission. When I got to the point where I needed treatment again, I had a choice of zanibrutinab for the rest of my life or acalabrutinib + venetoclax (both pill form) for 24 months, as part of a study to see if that combination can eliminate the CLL. I went back and forth between thinking that at my age quality of life was more important (zanibrutinab) and my oncologist’s enthusiasm that there was a possibility of a cure (a + v) In the end, I opted for A + V.
I have been on it for 13 months. I had two major problems. The first was a rare allergy to the drug used to protect the kidneys from TLS (allopurinol) I was in ICU for 10 days, where I most likely picked up C. Diff, an intestinal bacteria which is very hard to kill. I had four rounds of antibiotics in 9 months, but was declared a non-infectious carrier in June.
This week I had CT scans and a flow cytometry test, all of which showed no signs of cancer. I know that I will need a bone marrow biopsy to know if the CLL is completely gone from my body, but it does seem this bad year may have been worth it.
I should mention that the side effects that I have had from the two drugs themselves have not been that bad…occasional headaches, nausea if I don’t take the pills with a full meal, and temporary hair loss from the acalabrutinib.
I was on ibrutinib for 4 years 3 pills a day for life supposedly it was working well but didn't like side effects so my doc decided to put me on a drug vacation. I have been without drugs for two plus years and know of people off for 4 years
If I need to start again it will be zanatabrutib plus the infusion
There really is not a right or wrong here
I will tell you that taking just the pill is a much easier protocol
I do t know where you are but in America if you get Z you have to get blood tests daily for a month to check your levels. You have to build it up very gradually
And there is the infusion as well
The carrot is that they say after 2 years you don't need any more
In the interest of keeping this brief. Having just finished O and V in April. I would suggest starting treatment with a BTK. Greater chance it will be easier on your system. Which means possibly less side effects! If you do have any, dosage amount can be adjusted to reduce them. Your goal being feeling good while being treated and keeping the disease beat back.All the best to you in your choice. Thank God we have the luxury of some darn good treatments these days.
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