Since my previous post, I have seen my doctor who recommended starting treatment based on my levels of platelets and hemoglobin. Because I was getting the Moderna vaccine, he suggested I wait until April to begin treatment. The two options for treatment were: 1) Ibrutinib or 2) obinatumab and venetoclax. My questions are: 1) are those two treatment modalities the only ones available for me and 2) are they the best options for someone with my risk factors and 3) should I get a 2nd opinion?
Thanks for your input.
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Bajabarb
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Barb, outside of a clinical trial I think those are your best options, and two good options at that. Another possible option would be to substitute acalabrutinib for ibrutinib. They are similar drugs but acalabrutinib is thought to have less risk of side effects.
The debate between which two treatments offered to you is best centers around the issue of continuous therapy (ibrutinib) vs possibly time limited therapy (V+O). Another issue is whether now is a good time to take obinutuzumab as it can wipe out b-cells and put you more at risk for covid. Since you will have vaccine first, that might help, I dont know.
I personally would choose ibrutinib (or acalabrutinib if available to you). I see you are 74 yrs old. Ibrutinib might be the only drug for cll you ever need and its just a pill a day. The success rate for ibrutinib 7 yrs out is very high and we might see lots of people progression free at ten yrs out and longer.
A pet peeve of mine is doctors giving alternatives without a recommendation. Why would your doctor think you could possibly know more than he does to effectively compare these treatments? My first question to your doctor would have been which treatment would you take if you were me. If it is a young doctor, ask him what treatment he would pick for his mom if she had cll like yours.
A second opinion before treating is almost never a bad idea. That said, these are very effective and reasonable options you are being given. I do think reasonable medical minds might differ over which is best.
The other thing I like about single agent ibrutinib is that you can always add drugs like venetolcax later to get a drug free remission. My final thought is that if you have any sort of heart problem, that might be a factor in not choosing ibrutinib which is known to trigger afib in some folks, more often folks with preexisting heart issues.
The thread I am linking you to below might be helpful to you. Jm954 (Jackie) gives some excellent responses in it.
Thanks so much for your input, Cajun Jeff! Actually, my doctor did tell me which one he would recommend for his mother! Ibrutinib, primarily because it is easier to take and has been around longer than option #2. However, all the side effects I have read about with Ibrutinib are disconcerting even though they may never happen with the majority of patients. I have Supra ventricular tachycardia which I’ve been told is benign but I’m concerned because it is a heart rhythm condition like AFib. When I asked my doctor about Acalabrutinib, he said it had less data behind it since it hadn’t been in use as long.
I have just arranged for a second opinion with another CLL specialist in town and could go out of state for an opinion at MDAnderson or Mayo’s if needed. I think my main concern is that with my multiple unfavorable markers I don’t want to start a treatment that would prevent me from trying something new and better should the first treatment fail.
Barb, you are doing a great job and asking the right questions.
I treat at MD Anderson where I got a third opinion, best decision I have made yet with my treatment. So I am biased. If you have the resources to get a second opinion from MD Anderson or Mayo, I would do that in a heartbeat, not that I think you are getting bad advice from your current doctor.
I do not see any reason you could not substitute acalabrutinib for ibrutinib if you decide to go the btk route. Yes, there is less data with acalabrutinib, but there is still plenty data to suggest it works every bit as well as ibrutinib with less risk of cardiotoxic and other side effects.
As to your concern about future options, there is a lot of data about how effective venetoclax can be after ibrutinib, much less so going from venetoclax to ibrutinib, although I think might work too.
And the success rate for those even with your markers for people who take ibrutinib as a first treatment is very impressive. It truly could be the only cll drug you ever need.
2) we don't know your risk factors & aren't docs, and life situations that may affect treatments such as can you drive, do you have a caregiver, etc. should be included
I have same markers as you, but diagnosed a decade ago at age 52. While my platelets and red cell parameters were roughly the same as yours, my WBC was 50,000 at diagnosis & I was extremely symptomatic with extreme fatigue & inability to concentrate. If you are relatively asymptomatic & this downward trend of platelets & red cell parameters stabilizes, it may be prudent to wait a bit before starting immune suppressive treatment during a pandemic. I have a neighbor with CLL, he has relatively benign markers but his docs pushed for him to start treatment ASAP. He did some lifestyle changes, his white count stabilized, and he's gone mmm 3? years at least without treatment. Not always an option with 17p del....and mine is aggressive with a WBC doubling time of 4 months. Less than 6 months is considered a "poor prognosis" but there is at least one 17p del here who hasn't had aggressive treatment initially and was on Watch and Wait for an extended period. I truly believe it's more about the symptoms, and how the CLL impacts other systems. If my marrow had little CLL involvement as shown by Bone Marrow Biopsy, and I was somewhat stable....no excessive bleeding, fatigue, etc, & other organ function OK, I would wait until there's more Covid control if I could shield safely. These are things to discuss with your CLL specialist, and I have had more than 1.
Thank you for your reply and for the suggestions to consider before starting treatment. As far as life situations that might impact my decision, I do have a very helpful husband and other family close by. I live at an altitude of 6500 feet although my doctor doesn’t think that has affected my hemoglobin. Since I will be waiting until April to start treatment, I will have the chance to see if my platelets and red blood cell counts stabilize; currently I have no other symptoms except sleepiness which usually resolves with a nap! My second opinion is in early February so I will report back then. Again, thanks to all....your input is so appreciated!
I agree 6500 ft altitude shouldn't affect your parameters much, at 7000-7200 I have much more fatigue. Going camping close to 10,000 feet gave me so much bone pain at night I couldn't sleep. "Day drives" to lower altitudes might give you a little pep, that's how I discovered going from 7200 ft to 6200 ft relieved the bone pain & fatigue some.
i have medicare advantage with part d . Part d pays for ibruvica,venclexta. Gazyva is an infusion and is part B. total co-pays for all 3 is about 26,000 a year during 2020. I have managed with co-pay assistance programs for part d to bring my out of pocket for the 3 in 2020 down to about 8000 dollars. 8000 is far better than 26,000. and yes i never was on a trial. originally in 2019 both drugs were covered without approval needed. now although i;m getting some direct from manufacturer i still fill at least one of each a year under my insurance. Although medicare part d pays for both individually imbruvica and venclexta together has not been approved. as long as i fill each one once under my insurance computer it must pay for the drugs in the next year. You don't want to get a human being involved-at the processor-if you can avoid it.
HiI was diagnosed via low platlets (53) and low HB(85) at 56 in Nov at the age of 56. I had no symptoms at all but was stage at 4 plus. My oncology consultant put me straight on to Obinutuzumab and Ibrutinib, 11 weeks later and half through my Obinutuzumab cycles i feel great, bloods are heading back to normal and I hope to be restaged in 4 weeks at level 3.
Thank you to everyone who wrote a reply....it’s very helpful to get your perspective as well as your experience with the different treatments. After my second opinion, I will let you all know what, if anything, I’ve decided.
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fairly young (50) and just diagnosed
CT scan of abdomen pelvis and chest is that a basis for starting treatment?
venetoclax and obinutuzumab treatment for cll
Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?
ER visit after 13 days on Zanubrutinib (Diagnosed 13yrs 8mos b4 needing treatment)
