So my haematologist has been able to get me access to Acalabrutinib. I’m excited about this. But also a little uncertain. I’d like some wider advice from you all. Particularly if you are having this treatment yourself.
I am 13q deleted.
Gone from 87kg to 74kg. WBC from 77000 to 198000. Of which all most all lymphocytes. Haem from 142 to 106. Platelets fairly stable throughout two years of W+W at 240.
I’m only 38. I feel tiered. Swollen lymph nodes on neck, armpits and groin. Only the neck ones bother me.
I’m thinking i should go for it. But I have reservations about side effects over time and how new this drug is. There does not seem to be any long term data.
All thoughts welcome.
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Direstraits12
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I'm almost a decade older than you with similar CLL numbers. In the USA we have more choices but I ultimately opted for acalabrutinib monotherapy. Five months in, so far so good! Nodes and spleen gone, hemoglobin back to normal and feeling great! YMMV.
I don't expect this to be my only CLL treatment, but it has been a very easy start. I'm hopeful treatments will improve over the next five years as much as the past five.
Do you know your mutation status? If you have mutated 13q Cll, there is a reasonable chance FCR might cure you. Many doctors would suggest FCR for mutated IGHV 13q Cll.
I personally would still choose acalabrutinib because it is less toxic and leaves future options more open.
There might not be all that much data on acalabrutinib, but there is plenty data on ibrutinib. They both use the same mechanism of action. I think it is reasonable to assume acalabrutinib will be as good as ibrutinib and probably have less side effects.
Each time I had to choose which drug and when to start treatment (all 4 times), I talked through the options with my CLL expert doctor, and we chose what appeared to be the best option at that point. That was Rituxan in 2010, Idelalisib/Zydelig in 2012, Ibrutinib/Imbruvica in 2014 and Venetoclax/ Venclexta in 2016. In each case there was very little to no long term data, and just rudimentary lists of side effects.
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My doctor pointed out that since these were all non-chemo drugs, the effects were reversible. And a specific side effect rarely impacted more than 20% of patients, so it was almost impossible to predict whether you would be in the 80% that did not experience that problem or the 20% that did. In many cases most had minor (Grade 1) side effects that could be treated or tolerated. If the effects were stronger, and not tolerable (like my skin rash from Ibrutinib) the answer was to stop taking the drug and the side effect stopped very quickly. Then we would choose a different non chemo drug for the next round of treatment.
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Fatigue and enlarged nodes were my primary reasons for treatment, and starting each treatment quickly resolved both problems.
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So I suggest you talk through the decision with your doctor and if there is no reason to delay improving your quality of life, go for it! Then when you are feeling much better, you can decide whether to stay on the Acalabrutinib, or if needed switch to another drug.
I did a lot of reading and watching videos before starting treatment, Insofar as chemo, I always found Dr Furman, your doctor, to be the lead voice for the minority opinion that chemo should not be the first choice, even for those with mutated cll.
I found his logic persuasive. People with good markers are likely to do well on chemo or new agents, so choose the treatment that does the least harm.
I was on the fence between FCR and ibrutinib. A bout of hemolytic anemia made the FCR choice not an option for me as Fludarabine is contraindicated with hemolytic anemia.
I was leaning to ibrutinib anyway. In five to ten years we may know if Furman is right. Novel agent combination therapies might make FCR obsolete.
I am no expert, but I think Furman will be proven right and I would choose ibrutinib or venetoclax over FCR as a first treatment regardless of my markers. There are many cll specialists who know a thousand times more than me who still see a role for chemo and cll, so it can be a hard decision.
Its an interesting thread. I read that chemo can damage your bone marrow and cause long term side effects. I was keen to avoid it at all costs. Hopefully the btk inhibitors will be developed to a point where chemo is no longer needed.
I read your comment about me being laid back to my wife, and she was ROFL. She knows I am a total control freak ( 50 years of Project Managment building industrial factories, including in China and Puerto Rico - where nothing happens on time).
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I guess I have learned the hard way that with CLL you definitely cannot control your outcome.
A fellow long time CLL patient- Wayne Wells used to say -Some days you eat the bear, and some days the bear eats you, but with CLL we dance with the bear daily and do the best we can.
I am so sorry you are dealing with CLL at only 38. I was diagnosed at 54 in 2013 and I thought I was young!! I started taking acalabrutinib in January 2018. It has completely changed my life. I went from being exhausted and having to rest in the middle of cooking a meal to now riding 10 miles a day on my exercise bike. I went from having huge lymph nodes to having no palpable nodes at all. My labs went from dismal to normal after approximately 4 months. Side effects for me included headaches and mild diarrhea, which subsided after a few weeks. I also gained about 20 pounds but I had lost about that much weight before starting acala, so I actually welcomed the weight gain. I highly recommend this wonder drug and hope you have much success on it. If you have any additional questions, please feel free to reach out. Best of luck!!
Hi I’m in U.K. the started alcalabrutinib in October then added venetaclax in December I had no side effects on either treatments my blood results put me in remission am having a CTscan on Sunday then BMB on Tuesday consultant wants to see if I am in full remission hope this helps you
Hi I’m in U.K. on a trial called ACE - CLL- 311 3 arms Acalabrutinib +venetaclax no 2 is Acalabrutinib +venetaclax +Obinutuzumab can’t remember the 3rd arm if you have a question feel free to ask me
I have been on the Acalabrutinib Phase 111 trial since September 2016. No side effects. Lymph nodes went down within days. MRD in blood. I was diagnosed in 2007.
I have been on Acalabrutinib a little over a month and switched from Ibrutinib due to side effects. Ibrutinib really did a great job bringing my numbers and CT into normal. Except the Wbc, lymphocytes and neutrophils where hovering.
Acalabrutinib zeroed in on those numbers and brought them into normal range and the ibrutinib side effects for the most part disappeared.
Lots of good advice here, but I'd pay special attention to lankisterguy. ANY new therapy/drug will have no LT test results, but almost all of the newer drugs in recent years have been better than their predecessors. In this case (btk-inhibitors), Imbruvica was great, but I turned out to be one of the 15+% who had bad side effects. A nightmare ensued, but I survived, and switched to Calquence (Acalabrutinib). I'm now 2+ years into it, and have nothing but positives to report. No side effects, and slow, but steady progress in my blood numbers.
Was on W&W 12 years. Diagnosis at age 52. Felt fine. Nodes popped up around 9 - 10 th year. WBC 225k. Became anemic. All 3 of my doctor's ( local hematologist, 2 CLL experts) agreed on FCR. They said if I tried Ibrutinib and I had difficulty with it, I could not try chemo. I was 63.5 years old. It was my last chance for chemo. I got a port and only needed 3 cycles. Reached remission and was able to stop. Felt fine during chemo. No major issues. Got port out and almost 2 years remission.
I did not want to take a pill everyday for the rest of my life. I didn't want to worry about AFib ( family had heart disease). Possible side effects with daily pill. Have to go off of it for certain dental work, surgeries etc. Seemed like a lot of "work".
I wanted 3-6 months and done. Fortunately my docs agreed to test me after 3 cycles. I was thrilled to be done.
I know there are some experts who don't approve of chemo. I am glad I didn't have any of them as my doctor.
Thank you GMa27. Interesting take on it. I think you were very brave going for chemo. Glad it worked out for you. Only 3 cycles is amazing. Here's to a long remission.
Thank you to everyone who has responded. I read your replies and thought about it alot. I realise I am very lucky to have this option and went for it. Started yesterday. All good so far. I think I had just spent so long on watch and wait trying to put off treatment that when the time came I was abit uncertain of starting.
However reading all of your positive replies gave me the confidence to go for it.
Glad to hear you're doing well. I started Acalabrutinib five days ago and so far so good. I'd spent 6 years on W&W and like you I was nervous of starting treatment but so many people are reporting great results with this drug.
I will conclude Cycle One of my Acalabrutinib treatment next Tuesday 8th Aug and have my first full review since beginning treatment. I conclude with Bruce Woods concerning side effects. He had very few side effects. I had several headaches, mild diarrhoea, and mild nausea during week one. However, to date, I have not suffered any other nasties! No vomiting, bleeding, etc! Of course, this is still early days for me.
My Oncology team recommended taking one 100mg Caffeine tablet before taking my Acalabrutinib capsule to hopefully reduce the incidence of severe headaches during my first week. In my case, the caffeine worked a treat?
I feel well after near completion of cycle one as compared to my totally fatigued and unwell state barely one month ago. Anyway, this is my experience to date. All good! Of course, we are all different in how our systems react to treatment?
I hope this assists you in dealing with your own CLL treatment.
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Time for treatment decision
So it looks like the roller coaster is about to begin...
Starting Treatment
TO TREAT OR NOT TO TREAT??
Acalabrutinib or Ibrutinib.
