Hi everyone, first post for me. Diagnosed at 44, watch and wait for the last 2 years and now at 46 about to start my first treatment. Live in the Northeast US.
Doc is signing me up for Acalibrutinib at the start and then working in Venetoclax slowly. Want to thank everyone on here for all of the helpful information and sharing of stories. I've been reading a lot of posts from this community, and I feel good about Chapter 2 in this journey. Would love to hear any feedback or things to watch out for (i.e. no more grapefruit) Thx much!
Stats:
TP53 negative, IGVH mutated, 13q deletion
as of 2/8/22: WBC 159, HGB 11.5, PLT 95
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Flitzebogen
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I expect you will find the Acalabrutinib part easy, providing you set up phone alarms / reminders to take your pills 2X per day. (I've been taking targeted treatments daily since 2012, but all of them were 1X per day - remembering to take 2X - close to 12 hours apart is a much bigger challenge- thus I need my phone to nag me).
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The Venetoclax 5 week ramp up requires lots of blood tests and waiting for those results to be reviewed by your medical team. See:
SNIP: Assess blood chemistry and correct pre-existing abnormalities prior to initiation of treatment:
Potassium
Uric acid
Phosphorus
Calcium
Creatinine
Considerations for TLS with VENCLEXTA
VENCLEXTA can cause rapid reduction in tumor and thus poses a risk for tumor lysis syndrome (TLS) at initiation and during the ramp-up phase in all patients, and during reinitiation after dosage interruption (see dose modification and interruption information)
Changes in blood chemistries consistent with TLS that require prompt management can occur as early as 6 to 8 hours following the first dose of VENCLEXTA and at each dose increase
The risk of TLS is a continuum based on multiple factors, particularly reduced renal function (CLcr <80 mL/min) and tumor burden; splenomegaly may also increase the risk
Consider all patient comorbidities before final determination of prophylaxis and monitoring schedule
The risk of TLS may decrease as tumor size decreases
Reassess the risk of TLS when reinitiating VENCLEXTA after a dosage interruption lasting more than 1 week during the ramp-up phase, or more than 2 weeks after completion of ramp-up. Institute prophylaxis and monitoring as needed.
Interact with the Tumor Burden Assessment tutorial to explore the relationship between lymph node (LN) size, absolute lymphocyte count (ALC), and TLS prophylaxis and monitoring.
3 STEPS: ASSESS, PREPARE, INITIATE
Chart for tumor burden risk assessment, preparation and monitoring
*1.5-2 L of water (~56 ounces) should be consumed every day starting at least 2 days before the first dose and throughout the ramp-up phase, especially the first day of each dose increase. Administer intravenous hydration for any patient who cannot tolerate oral hydration.
†Start allopurinol or xanthine oxidase inhibitor 2 to 3 days prior to initiation of VENCLEXTA.
‡Evaluate blood chemistries (potassium, uric acid, phosphorus, calcium, and creatinine); review in real time.
§For patients at risk of TLS, monitor blood chemistries at 6 to 8 hours and at 24 hours at each subsequent dose ramp-up.
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Once that 5 week ramp up is over, the rest is a breeze. Just 4 big Venetoclax tablets each day along with the 2 Acalabrutinib capsules.
Len thanks for the reply and the heads up. My doc mentioned TLS the other day which is why they do the slow ramp up. However, I wasn't aware of all the additional check-ins (which makes sense).
Most issues with acalabrutinib occur in the early months. These tend to fade over time. The venetoclax is fairly well tolerated, but it is a powerful drug. Aside from the concern about TLS, neutropenia is something to watch for. Your doctor will coach you through all of this.
I've been on a combination of acalabrutinib, venetoclax, and obinutuzumab for ten months. The results have been very good. I am now MRD negative blood and bone marrow. The side effects were varied.... headaches, muscle aches, weird rashes, some afib, etc... But most have gone away. All a price worth paying for the negative MRD result. I hope you get similar good results.
Congrats on achieving MRD! I'd be delighted to join you at that club in the future (fingers crossed). I will keep an eye out for neutropenia and thanks for the reply.
I am in my last month of treatment (O+V protocol). Only issue for me was neutropenia 4 or 5 months into treatment. My doc suspended Venclexta for 2 weeks, then resumed my Venclexta at 300MG - down from 400MG. I will be going for blood work and CAT scan next week. No mention of bone marrow biopsy.... not so sure if that is a big requirement anymore.
My experience with Venetoclax was a bit more dramatic. As soon as I got ramped up to 400 mg, I went neutropenic. So, they pulled all meds for a month. My numbers recovered and I was restarted on 200 mg of venetoclax. And once again, I went neutropenic. They stopped the venetoclax for two weeks, then restarted at 100 mg. So far, I seem to tolerate this level. I was worried that such a low dose would never get me to MRD negative. Thankfully, I did not have to worry about that.
In hindsight, I really think the obinutuzumab did most of the heavy lifting for me. My flow cytometry showed me to be CD20 "bright". My guess is that this gave the obinutuzumab ( a CD20 monoclonal antibody) a really distinct target.
Nice combo! Are you getting it in a trial? If not, did you have any issues getting insurance to cover either drug? I'm a similar age as you and I've been on acalabrutinib for two years (zero issues) and I'd like to add venetoclax to go for a cure (or at least a drug holiday).
As for tips, I highly recommend an AM/PM pill organizer (and a phone reminder per lankisterguy ). Cheers!
Working with doc now RE insurance coverage. Suppose to start once all of that gets ironed out (in the next week or so). I will let you know if I have any issues. Glad to hear that you have been on acalabrutinib and are doing well! I will definitely need the pill reminder app! Thanks to you and Len for suggesting.
My husband started Acalabrutinib last April, and in the process of getting it we discovered Astra Zeneca has a payment program that is not need-based. We have yet to pay dime for it, and at nearly $20k a month (or thereabouts), that’s a big hit we’re glad not to take. They don’t advertise it, but you should definitely ask about it!First several months - headaches, more fatigue, some joint pain, GI stuff, all of it fading away as the blood results improve. It does the job; it will for you!
Wishing you well with your Journey. Marmalade is something else you can't have because of the oranges it's made out off. My husband was on watch and wait for 9 months when he started ibruvinib in July 2017, and had his chemo check yesterday, and still going in the right direction.
I have been on Acalabrutinib, Aciclovir and Co Trimoxazole since September 2021. No nasty side effects and blood numbers excellent. Good luck, stay safe 🙏
Thank you to everyone for your posts! I truly appreciate it and it's so nice to hear that you are all doing relatively well! I am very content with the game plan going forward. I hope everyone continues to stay on their positive track. - Best
You need to drink plenty and also the marmalade is made with seville oranges which you cant have. I recently bought lemon and lime marmalade and I am happy with that occasionally.Good luck, Anne uk
Hello! I'm going on 45 and was suggested to begin the same exact treatment due to bulky nodes. I am in Northeast US seeing a heme/onc at Hopkins. Going for a second opinion prior to start next week in NY Presbyterian hosp. One thing I've seen highly advised in this group - get a 2nd opinion. Of course I didn't want to start this soon but I'm looking forward to feeling better. (Esp since this node expansion seems to be reactive of the booster I got in december).
My insurance covered one month of acalabrutinib for only $40 which is a major blessing. I picked up the med just in case my second opinion says she agrees with the plan or I decide to follow the direction of my Dr at JHH. I'm 11q deletion, mutated.
Disappointed about no grapefruit, but working on eating a much better diet and mental health as well. Dr says I'll feel amazing again soon with treatment.
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CD38 POSITIVE AND ZAP -70 POSITIVE 
MY SENSE OF HUMOUR TOOK TO ITS HEELS AND RAN AS FAST AS IT COULD!!!!
