Had a good chat with my consultant following the good news that after 7 month's on ibrutinib with 17p I'm doing very well. Took the opportunity to discuss what may lie year s ahead venitclax would be my next port of call although he said new drugs are on the way and last resort BMT which is of course the only chance of a cure and with me having 17p would have been my only option a few years ago before the new drugs emerged makes you realise we are lucky today but also made me think as I'm only 49 would I be better off going for BMT and the chance of a cure or leave it Which is my consultants view as a last resort due to the ever changing treatment landscape we have now in cll
Thoughts please
Written by
cartwheels
To view profiles and participate in discussions please or .
good questions. but no definitive answers. my opinion is that allo bmt will be replaced in next 5 years by cart adoptive transfers. so as long no Richter, I would think venetoclax is a better option then allo
I would run out all approved drug options or look at clinical trials for combination therapies, before considering a HSCT.
Its a crap shoot but waiting may be your best option.
I'm on Zydelig (idelalisib) after quitting Imbruvica (ibrutinib) due to side effects and it has bought me a year with a reasonable quality of life, I hope for a few more.
Yes I'm going to follow my consultant s advice and use all drug options first then see where we are at hopefully many years down the line. As for BMT he said hospitals are reducing them now in favour of drugs and that in his opinion it's best left as s last resort
Hi Chris, Would you share the side effects you suffered on ibrutinib? I'm currently on idelalisib but it is not doing the job it once was. (2 years in) My doc is going to offer me ibrutinib.
I can't speak for Chris but I'm on ibrutinib and have no side effects now but did in the 1st 6 weeks mainly aches and joint pain but they all have now gone
I will be one year next month on Zydelig (idelalisib), its been great... constant diarrhea and mild colitis, not bad.
Imbruvica (ibrutinib), I was a very early patient in Canada, and experienced colon, urethera bleeds and an increase in preexisting A.fib...large blood filled welts, the size of half a golf ball... popped up on over my torso. Extraordinary painful. I stopped it after 3 month, and moved on to dealing with colon cancer.
I feel some of it was caused by Xarelto and Cipro. Cipro now requires a reduced dose of Imbruvica (ibrutinib), but nobody knew back then. Guess I wasn't the only one to have problems... 🙁
I think that Imbruvica (ibrutinib) is a great drug for 90% of patients, but regrettably I fall into the 10% that had adverse events...
Thanks for this Chris. I'm thankful that I shall probably be among the 90% who don't have trouble. Big question for me is "Will it work?" I have NHL and it may not find the right things to block. Zydelig was a life saver for me. Gave me a normal life for more than two years. I recently "interrupted" the drug for 17 days while I recovered from a host of side effects. (Cough, diarrhea, rash, fatigue, pyrexia, nausea) These were brought on when I contracted a nasty cold and was given antibiotics. I began taking zydelig again 29 days ago. I won't know for a couple of weeks if my blood has returned to normal. During the interruption, all the side effects disappeared but my WBC soared to 100 plus. One day at a time!
We are in Florida. My husband is 70yo with CLL. 17pdel. No symptoms other than some off blood work. His doc wants his to do a clinical trial since he is “treatment naive”. It requires an IV every 3 weeks. And could produce some unwanted side effects. He is still working full time until June 1. So, that said. He is not doing the clinical trial but was just remarking that YES they are trying new drugs all the time. This one is made from a “humanized cloned monkey”. Meaning they injected some of a human’s cells into the monkey spleen I think. Some organ like that. It doesn’t sound pleasant as a pill but it is in the works! Specifically for 17pdel.
Thanks for the information for me ibrutinib is working very well and is the drug of choice for most 17o patients but there are as you have said some wonderful trials coming up
There are drug trials with imbruvica plus Venetoclax or similar that are all pills. I am on it and it has been good so far .
I am MRD negative in the blood and CR on the MRI so far.
Clinical trials are great but you have to be careful in that sometimes doctors want you to go in the one that they need to fill up instead of the one that's best for you and your lifestyle. With CLL fortunately we can wait sometimes till the best trial is available
I almost did a trial with imbruvica plus gazyva but then decided to wait after I found out I was 17 K delete it . Fortunately the v plus I trial opened a few months later .
I was diagnosed in early 2014. CLL with 11Q deleted. My treatments have been FCR stopped after 2 rounds), Ibrutinib (stopped after 21 months) and now Venetoclax (for the last 18 weeks). No side effects apart from tiredness. Bloods now normal. Feeling well. I'm 78 and live in the UK. All the best to you.
I, too, have CLL with 17p. I was diagnosed in July 2015 at the age of 58. I was told that a bmt was my only hope and started on a fcr regiment of chemo. I didn't like all the risk factors associated with a bmt, even for those who survive it. I believe in quality of life, not quantity. As I struggled with the decision of what to do, after my 4th chemo session the decision was made for me - chemo wasn't working and I was no longer a candidate for a bmt. I've been on ibrutinib (imbruvica) for almost 2 years now - with excellent results - and happy with the decision that was made for me. So, to answer your question - I think you made the right decision - Joe
Thanks well to be fair I was never given a choice but advised that ibrutinib was the best option now and I never really looked into it . But as I now understand the treatments better I asked the question and the answer was yes 4 years ago BMT would have been my only option but not now hence the drug options. Of course I'm told as a last resort BMT could still be done but they are confident of improvement on new versions of ibrutinib to deliver
I'm exactly there - Diagnosed 7 years ago at age 45. Failed on FCR after 3 years and found out I was 17p, failed on Ibrutinib after 14 months & ended up in hospital with my WBC around 400, started Venetoclax which took some time to take hold but eventually did and the we added several infusions of Rituximab. My counts are currently all normal, and my biggest node is 1.7cm, with 30/40% CLL cells still I'm my bone marrow.
Which brings me to this moment, sitting on my hospital bed receiving pre-conditioning for a transplant later this week. It's been the hardest decision I've had to make. But I also know I will eventually fail on Venetoclax with few options available in Canada at the moment, and the way it roared back last time I may not have time to do much of anything.
Wishing you all the best for your transplant, HB50. You've had a very rough ride and I can understand how hard the decision was (to go for the transplant).
My wife, Nelia (NMMP), will be posting my progress on this site. Earlier this year she posted about my relapse, hospital stay, and our experience with Venetoclax & trying to get my CLL back under control.
You pose a great question. I am very similar to you I am 17p deleted and 53 years old .
I am on a combo trial of V plus I.
It has been very good so far. I am MRD negative in the blood after nine months . CR on MRI.
Now that I'm over 10 months into the trial the big question is what's next if I need it?
I don't have VEneticlax and option since I'm already using it
Zydelig might be an option.
New drugs are being developed to block the MCL1 pathway. That could be possibly added to my current to drugs to solve a possible cause to the first or drugs not working. Azn and Meip are working on this drug. Those are the stock symbols for their those companies .
Also car-t seems very attractive .
I see a BMT as a last resort .
One also has to keep in mind they have to be OK for a BMT or car-t therapy. Thus the last targeted treatment might need to be a bridge to car-t or BMT.
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.
What to do?
Thoughts on CLL treatment and watch and wait
Cardiac side effects from drugs: Predictable?
After BMT, how long can last in the hospital?
