Ibrutinib versus allogenic stem cell transplant

Hi , sorry to hear your news.

So I had a rare T-Cell Lymphoma and was given two routes. The first was to use all the available remaining chemo/treatments available (but I do not have a note of the names) at the time (5 years back) and I would last 30 months at the best.

Or have an Allo SCT (I actually had two). The treatment and recovery was going to take up to 25 to 30 months but the the rewards would be much greater so I went on the Allo(s) and I am now 31 months past that alarm bell.

I don't work on percentages, I work on looking at the greater good of the treatments and for me it was the roll of the dice that would give the better outcome.

Lets see if others come along to help you out. You may also want to look at our Stem Cell Transplant Forum we have lots of folks from various blood cancers may have had to make discussion something the same as yourself.

It would be really useful if you could put something into your profile as this does help others when replying to you or for those looking for support and information as they can read a bit about your journey so far.

Just click on your username and then select 'Edit Profile' under the 'Profile Settings'. If you're not sure what sort of thing to put just click on my username, Thehighlander to read my profile but my journey was rather long so it is a touch like War and Peace ;)

Edit: I was having a look around and found that Ibrutinib is often used as a bridge towards an Allo SCT and in another case it has been used after an Allo SCT.

Hi Bishops15, I have not been in your position but do know others who have found themselves in a similar position, where they have been kept alive by trial drugs until something better came along as not all were eligible for a SCT, some where and for them it was a choice re quality of life and what did the options offer. Most chose to go down the transplant route as they chose to trust the science and grasp the opportunity and I can honestly say over the last 9 years I only know of a very small group of people for whom it did not work. The are risks and each patients experience is unique so stats become irrelevant and they are also out of date. Transplants are done more frequently now so they understand the issues better and in most cases can manage them better. Not an easy choice, though you do know at some point Ibrutinib will stop working, have you had a discussion about the second generation of these drugs that are now coming up for approval and I believe 3rd generation are in development, if not may be worth asking. It may give you a range of options, most mcl patients have been down your road but few have had to consider an allo transplant. As Mike has mentioned in the stem cell transplant group you will find other who have found themselves in a similar position but they will have had different types of blood cancers, your scenario is much like that of Hodgkin Lymphoma patients and the are a number in that group who will understand so do chat with them.

John 

BTK inhibitor Ibrutinib alone does fail, but  trials giving in combination with rituxan or veneclax the disease is more stable and they are having negative minimal residual disease for longer times and they are talking about it being a very long remission for the dual treatment.

 I chose acalabrutinib (second gen BTK) plus Rituxan treatment  and have been on it for a year. Currently I  Have no B cells and scan is unremarkable and have negative MDR.  I am older and not eligible for ASCT, so I made the choice of dual treatment since mono therapy fails.

Hope that helps

Hello Bishop 15,

You might want to look at the discussion on the ENRICH trial in this group- Combo therapy worked with another person also.

MCLKid 

Thank you for responding . 

Best wishes. 

John 

Thank you for responding. 

Irs very much appreciated . 

Best wishes .