Good morning all! Hope you are all doing well today. I’ve been reading a lot, but not posted much, so hear it goes! I have b en struggling with fatigue for years, I will not go through all the details of the past 6 years, but it’s been a ride, I only found out last year I have Cll, 11q del (although 5 years ago I told a couple docs I thought I had Leukemia, my bloodwork at the time simply did not justify it or a reason for bone marrow biopsy which I was wanting!)
My fatigue and body aches, bone pain are all getting so bad I just feel like I constantly need sleep or rest, I have my adderall for days I really need to get stuff done, but hate to take it. I’m trying to hold out for clinical trial ... acalabrutinib, venetoclax, and obitunzimab it was supposed see you be open for enrollment in March then covid hit. I’ve been checking MD ANDERSONS site daily to see if it it available. Still not, on a side note they just started opening up trials again, so hopefully i will see it pop up on there soon!
Are any of you on this trial, and if so how is it going? I know I have seen it active in other states and I could enroll now in Boston, but I would prefer to travel to M.D Anderson
Written by
Tton46
To view profiles and participate in discussions please or .
When did that change? Are you certain? I’m in the Dana-Farber AVO trial, Cohort 1, 1st to sign, 3rd to start, I believe. I’m unmutated. That’s all. And I work there. Haven’t heard that. Always glad to be wrong, though...means I’ve learned something new.
I have been on this trial for about 19 cycles now participating in Boston. Dana faber is a great center and I feel well taken care off. See my profile for more details.
It is a great trail but I had ups and downs with serious side effects which could be partly caused by my CLL. I am in complete remission likely after cycle 12 but had to stop all medications after cycle 17 due to pancytopenia. Continue to have neutropenia thrombocytopenia and low grade hemolytic anemia after being off all medication now for 2 months. Had to stop venetoclax in during the trial due to neutropenia but continued on 300 mg until stopped completely. Intention was to take acalabrutinib and venetoclax until cycle 24.
Overall feeling great without major infection or bleeding complications. Work full time many hours and did not have to stop except for treatment and of course venetoclax load for 3 days each dose increase.
I feel blessed having had the chance to participate but may have underestimated the complication risks a bit. It is a long trial compared to FCR for which I would have been a candidate as well. Would I do it again? Absolutely. The team at Dana is truly outstanding and I am sure the same is true for MD Anderson. I hope you can get in and start soon to feel better. My debilitating fatigue improved within 2-4 weeks.
Hi I’m in U.K. I’m on A + V it has worked really well for me no side effects at all bloods normal noades normal my consultant said I am in remission after 6 cycles just waiting for BMB good luck hope you get on trial in U.K. trial is called Ace 311
I am on AVO phase II Clinical trial at Dana Farber, I am TP53 and 17p deletion. Doing very well, fully ramped up on the Venetoclax and after today, I have two more Obinutuzumab infusions. I will be restaged sometime in July/August. I was not a candidate for chemo due to my markers. I was happy that this trial was open for me due to the fact that I have a family history of Afib, I was concerned about taking Ibrutrinib.
Hi Sandy. I have one month left in this trial! If MRD becomes the revised outcome measure, I will have been CR since month 7! Love the Farber and Dr. Davids, Josie, Victoria, infusion nurses. Everyone is so kind and brilliant.
I could not agree with you more. I have had the best experience with those same folks, adding in Dr. Jennifer Brown. I am so grateful that, like you, I have an experienced and knowledgeable team. Early on the best advice I got was to get a CLL Specialist, I am convinced that has made all the difference for me. I wish you all the best.
I know that no matter what happens, I am held blameless. Why? I sought out the best (and there are “bests” all around the country). An error in my genetics might do me in, but not in my decision making.
I wanted Dr. Brown when I became a patient in 2013. Dr. Davids walked in and I was like, “Oh, man. I got Dougie Howser!” Well, Dougie was pretty brilliant, too.
How did your ramp up on Venetoclax go? I am due to start V on Tuesday. Dr. Brown is my doc too. Dana Farber is a great center - my infusion nurse even picked up on the fact my reticulocytes were low and I was experiencing hemolytic anemia. Very lucky to be close to a place like D.F.
The only issue that I had on the Venetoclax was that hemolysis of my bloodwork. I am not certain, nor were they, that it had anything to do with the Venetoclax. I have super tiny veins , so they were unable to use a very, very slightly thicker needle. I had to have multiple sticks. Dr. Brown is incredibly thorough and very cautious. Finally they tried having one nurse draw and the other pull off the band and immediately put the sample on ice.
They advised me to take the Venetoclax with a fatty snack and a full belly. While you are ramping up, you sort of have to follow their schedule. I found that I was very bloated and gassy. (Yep) Now that I am on my full dosage, I take it between lunch and dinner. This works best for me. Those side effects are nearly gone. I chose to slowly move up my time to find the best time for me. They warn about tumor lysis during ramp up. I had a scan and was told that I was at low risk. Also, I believe the order of drug administration helps lower the risk. Acalabrutinib then Obinutuzumab help shrink your nodes quite significantly, at least that is what happened with me.
Rick, sorry for the lengthy response. I wish you all the best. I have my last infusion mid July. Whoot Whoot!!! I’m doing awesome. My numbers look great and best part is that I am feeling AMAZING!!! I have been whooping my kids butts at pickle ball and I feel better than my old self.
Oh, sorry, I assumed you were in the U.S. when you mentioned Boston. I guess you could get it prescribed my a U.S. doctor (?) but Canadian insurance probably won't cover it.
I assume Ibrutinib has the same issue.
Good luck. I hope you find a way to get these soon.
As you mentioned in the US the monotherapies are covered - I don't know about the combo. It seems like from user comments here that usually Ibrutinib or Acalabrutinib is tried first and then if those fail they move on to Venetoclax + Obinutuzumab which leads to MRD than other CLL treatments.
If you're able to get Acala (which I'm on) or Venetoclax separately I don't why your doctor would wait on getting the combo. Many patients have done quite well on Ibru/Acala. (Maybe I misunderstand your particular situation.)
I have a telephone consulttion with my haematologist on 4th June and hope she has been able to get clearance for me to have acalabrutinib as a monotherapy. NICE haven't yet authorised it for general use in the UK and there is no marketing approval for it either in UK or EU, though Sweden has approved its use. If clearance is denied, then it is back to Plan A of obinutuzumab and chlorambucil
I wish the best for you! Medicine has come a long way in regard to CLL. While I only know enough to be dangerous I can tell you the Gazyva worked wonders for me. My Oncologist has been superb and I am nothing if not grateful for him and his staff. I am much older than you so my treatments are probably different from what you have or will receive, but hang in there! There is a brighter day ahead!!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Acalabrutnib and Hair Loss
Venetoclax
Venetoclax & fainting?
Venetoclax and rituxinib
