My Ibrutinib/venetoclax journey

[Oleboyredw-uk]

Hi all,

I hope, despite the current situation in general you are all coping. I had planned to write this post in the second week if April but everything was pear-shaped and my checkup was cancelled.

In the intervening time the hospital arranged for a phone checkup and I got my bloods done at my local GP. So, bloods were done about 12 days ago and my phone checkup was Friday, two days ago.

Save you checking back (my journey is documented in previous posts), relapsed 3-4Q16, signed up to CLARITY trial and started Ibrutinib on 14/3/17, added Venetoclax on 10/4/17, stopped both 8/6/18 as I had hit the targets set.

Blood results for May 2020, ALC 1.3, PLT 185(highest it’s been since diagnosis 2012). Most importantly in my mind, they shared the results from the blood sample sent to the trial team in January. As of Jan 2020 still MRD negative. Big sigh of relief.

My very best to you all, stay safe, rob

[annmcgowan]

Great news, well done.

Ann

[BCTexas]

Excellent news! I finished the same trial November 2019. I have my next follow up visit with my doctor next week. Hopefully I'm still MRD negative.

Cheers!

BC

[Justasheet1]

OBD,

Weren’t you 11q-? Great results. Venetoclax added to ibrutinib may be in my future too.

You’ve been off the meds for 2 years?

Jeff

[Oleboyredw-uk in reply to Justasheet1]

Jeff,

yes, 11Q del. Curiosity, forces me to ask why you specifically asked about 11Q del?

Last meds taken on 8th June 2018. Two years tomorrow, I’d not spotted that my 2nd unmed bday tomorrow!

best to all, rob

[Justasheet1 in reply to Oleboyredw-uk]

Rob,

Even though I understand how everyone is different, I’m also 11q- and relapsed once from chemo.

I’m on ibrutinib for 10 months now and might get Venetoclax added soon so I was curious to how durable your unmed is.

Keep it going OBD! Happy anniversary too.

Jeff

[HopeME]

Awesome news in a world with little good news!

[studebaker]

Good results. Congratulations

Dana

[Jm954 Administrator]

There is hope for all of us in your results Rob, thank you for letting us know

Jackie

[Oleboyredw-uk]

Thank you for the comments. I was trying to explain to a doctor that I really did nothing, purely a bystander. It was the Drs, nurses, researchers etc who have all done the work and the drugs (especially Venetoclax) that have done all the ‘heavy lifting’ here.

Awaiting a call to find out when my next lab samples to check amongst other things my MRD status will happen. It should have been now, but I suspect in all the COVID19 situation it might get pushed to nine instead of six months as I missed the April checkup.

I can live with that.

best to all, rob

[Newdawn Administrator]

Hi Rob.

The Clarity trial you’re on led the way for my trial, Flair and like you I bagged the excellent I&V arm. I started last day of Feb ‘19 and have had excellent results but just missed being UMRD 11 months later from the flow and BMB at the beginning of Nov ‘19. Due to the Covid shutdown my tests haven’t yet been repeated but my labs have been in normal range for many months (platelets a bit low but bouncing around).

I’d been on full dosage until 2 days ago when my Consultant suggested reducing the Ibrutinib by 1 tablet a day to allow me to take an anti inflammatory for severely sore joints and muscles. Frankly I don’t agree taking them at all on Ibrutinib but have agreed to try it out in the absence of no other answers.

Your success has always inspired me. I remember meeting you at the CLLSA conference in Leeds when Prof. Hillmen spoke of the tremendous success of your trial. It’s been an absolute game changer for so many.

Long may your remission continue and here’s hoping I follow on with the same success! 😊

Newdawn

P.S. are you happy for your post to remain unlocked?

[Oleboyredw-uk in reply to Newdawn]

Hi Newdawn,

I think my previous I/V journey posts were unlocked, so I’m OK. However, if it it stopping people interacting I don’t mind it being locked.

Yes Newdawn, the Leeds meeting seems a long time ago now and it was the meeting at which I met more people from here than any CLLS meeting.

rob

[cllady01 Former Volunteer]

Really good news for CLLers, Rob--even with the variations we all carry and some we have no clue about, this brings a lot of sunshine to the future for CLL.

Best wishes for a long and healthy "unmed" stretch.

[Canuck901]

Excellent , wonder why this isn’t standard therapy yet

[Oleboyredw-uk in reply to Canuck901]

I guess there is not enough longevity data yet. But that’s just a guess. Every month that goes by adds more. In UK there is data from the 50 CLARITY participants plus the flair arm that has I+V, but it is all quite short term. That’s not a lot if people yet. Plus then others from other countries of course.

best, rob

[cartwheels]

That is excellent news and one once again that leans towards daul therepy with the goal of remission and the so called holiday break which hopefully would help prevent resistance against the drugs and of course savings to the NHS as well .

Well done

[chillsome]

Such great news and I hope your results continue to be good. I am on the I & V arm of the Flair trial (since Sept 2019) with good results so far although inevitable delays in testing just now. It is so encouraging to hear how well you have done and especially that you were allowed to come off the drugs after 15 months (if I have got that right). I was resigned to 2 years minimum so I could not be more pleased to hear that I may get a reprieve sooner! Good luck from now on.

[Oleboyredw-uk in reply to chillsome]

I’m never quite sure how to say how long I was on the drugs. Was on I from Feb17 to Jun18 and I+V from Apr17 to Jun18. So, 15 is OK, one is 16 and both 14!

The trial protocol actually stated 24 months unless targets hit or treatment failing. I feel, but it’s only my uneducated thinking, as I stopped 10 months early I might have some in the pot for next relapse if/when it happens.... Who knows.

[chillsome in reply to Oleboyredw-uk]

My consultant keeps telling me the FLAIR trial states 2 years from being MRD negative which is why I am really hoping they can do the bone marrow biopsy etc soon. However, I am hoping he is just playing devil's advocate and will reduce this if all is well with the 9 month test results. I tell myself I will feel better when off the drugs but I do know that a full and lasting cure is the most important thing plus I did sign on the dotted line to go along with the timeframe the trial indicates. Thanks again for your positive posts.

[Oleboyredw-uk in reply to chillsome]

I don’t think I’d object to that. I was MRD negative in peripheral blood in December 17. BMBs were every six months so I had to wait until March 18 for the next one which was MRD negative. I was not allowed to stop until the June because on a CT scan in March they found a lymph node that was 17mm and the rule was all had to be 15mm or less. So was retested in May and the node was down to 14mm.

CLARITY rules for exit were different to Flair and I believe that for some that didn’t have quite as quick results as me CARITY made some adjustments to rules extending time a bit (I got to know one of the others on the trial).

[chillsome in reply to Oleboyredw-uk]

Sounds good thanks.

[Bubnojay]

Great to hear from you Rob and with news that brings hope to many. I guess those walking boots are seeing a lot of action now.

Best wishes

Bubnojay

[Oleboyredw-uk in reply to Bubnojay]

Well Bubnojay, not as I’m shielding. However, we have a dog that needs walking and my wife is ‘shielding’ with me to keep it simpler for us in the house.

So, scouring local maps we’ve found a couple of walks we can do with the dog and the closest somebody has got to us is 100mtrs. Seems like walking at 05:15 is not very popular!!

rob

[Bubnojay in reply to Oleboyredw-uk]

I find early morning makes life easier and safer too. Without going out early I would feel trapped, a prisoner in my own home.

Bub

[Oleboyredw-uk in reply to Bubnojay]

Yes, but walking at 015:15 plays havoc with trying to watch tele at 21:00. I seem to see TV programs that have a start and an end but no middle! Some even have a start on one channel and an end on another (my wife denying any foul play, dog looks guilty).

rob

[Bubnojay in reply to Oleboyredw-uk]

Hmm the remote being usually under male control, I venture to suggest a small nap may be the culprit. Of course your dog may be called Lassie in which case all bets are off.

Bub

[Oleboyredw-uk in reply to Bubnojay]

Not so much a small nap... as a reasonable sized one if truth be known!

[Elizabetha]

This is great news Olbd! I started I&V on 31October 2018 and doing well although not yet mrd neg yet. I missed my last round of blood tests due to current situation but due to have them done on 24th June. Haematologist hopeful that I may achieve the magic number this time however need to wait and see.

I am amazed at the timing of your walk, I don't think that I could do it but desperate to get out so maybe need to give it a try!

Keep well and continue to enjoy your dawn walks. 😊

[Smakwater]

Like the results Rob,

Thanks for trialing up. It the pioneers that prove safe passage.

JM