Update on failing Pirtobrutinib and BTK Degrader Trial

[ReneeSusan]

I got a call from Upenn yesterday afternoon from the NP of the btk degrader trial. Very unexpected as I was told it had been pushed back to July. Turns out I met her, Kaitlin when she was working with Dr. Mato and I was his patient in 2015. She remembered me and was very caring and easy to talk to. She explained alot about how the trial would go and that I need to be scheduled for many tests prior.

The trial will start mid June, tentative date June 9. So lots of work to do to get testing done before. The doctor leading the trial is Dr. Chong. I’ve heard positive things about her. Unfortunately Dr. Chong is at a conference May 29, when I go to Penn for results of pet scan, so I go back either 30th or 31st to sign, have some some tests done and get dates for whatever they couldn’t schedule for that day. I am excited and nervous and a bit scared all at the same time. Have to have another BMB and it will be without sedation, ugh! So I plan on taking tylenol and a low dose Xanax prior. I did that before my first bmb and it helped, because I received no sedation. When the trial starts the days will be long and tiring, 12 hours first day and 8 hours day 2, repeated for 2-3 weeks. Will need to make arrangements to stay those days overnight in a hotel close to the hospital to make things easier in hubby. Hopefully the trial provides some reimbursement fir travel and lodging. That would be a plus.

Lots to coordinate, but that’s ok, cause I’ve been given a great opportunity. I hope the drug can finally get me into remission. It’s been a long time coming.

Anyone who has been in a degrader trial, would you mind sharing any insight with me? Please feel free to send me a chat, I would love to learn more so that I can prepare myself for what’s to come.

I will update when I know more.

Still fighting the good fight, My best to all of you warriors!

Renee

[studebaker]

why no sedation for BMB?

[Katie-LMHC-Artist in reply to studebaker]

My last BMB was with no sedation!😩😩😩I will take the suggestion of Tylenol. Make that a double!!’😂

[J1015 in reply to Katie-LMHC-Artist]

Did they give you a choice and you chose not to be sedated?

[ReneeSusan in reply to J1015]

I wanted sedation, but it would have to be done under interventional radiology at the hospital and not enough time to schedule before trial starts.

[J1015 in reply to ReneeSusan]

That’s too bad. I have never had one but know that I eventually will have to have one. I try not to think about it too much. I hear that if you get an experienced tech that it’s not too bad and it’s quick. Wishing you the best.

[Katie-LMHC-Artist in reply to J1015]

They did not offer sedation. I have a client with CML who had a BMB and they offered her sedation. Perhaps they looked at me and thought that I did not need sedation! 🙄

I did not know that it was an option! So what is worse...a root canal or a BMB without sedation? Hmmm. 😂

[HopeME in reply to Katie-LMHC-Artist]

The anticipation is worse than the actual procedures. One root canal and three BMBs. Never a problem with any of it 😁.

[ReneeSusan in reply to HopeME]

Thanks, needed that!

[Katie-LMHC-Artist in reply to HopeME]

My first BMB in 2010 was easy while in W&W. The one I had in 2022 at Dana Farber in Boston was difficult. Perhaps it’s due to the medical people that do the biopsies. 👩‍🦳

[HopeME in reply to Katie-LMHC-Artist]

I’ve had two BMBs done at Dana Farber by the same NP who is an amazing professional. After she did the second one I commented on her expertise and she said something like as good as you are every bone marrow biopsy is different. I took it to mean that even the best medical professional can run into problems on the same patient at different times. That being said, she added that the vast, vast majority of these procedures are uneventful.

[Katie-LMHC-Artist in reply to HopeME]

Thanks for sharing. Hopefully, my next one is better!

[SofiaDeo in reply to studebaker]

You really only need a local anesthetic. Oral sedation, patients may not hear/respond as well as a clear headed one. If you don't hear "stay still" and inadvertently flinch, there can be more bruising/pain after. They are a fall risk getting into & out of the treatment room, since an oral med has to be given ahead of time & take effect. General sedation, well, knockout anesthesia like that also carries additional risks.

FWIW, the worst BMB experience I've ever had was when they tried to schedule oral sedation around the BMB. The ones using locals were fine, even the one where my first marrow specimen was crumbled & she needed to do a second punch to get a decent sample. Intense pressure wasn't really painful, it was upsetting more because it was not a usual thing one experiences, and the noise was no worse than hearing a dentists drill, to me.

Some people do have intense anxiety, they need the sedation, as some need sedation at the dentists. Similar to how it's often easier to sedate children, they can't really understand/control movements if frightened. But especially if you're there half the day, there's a bunch of tests, then trying to go over details of a trial/paperwork, ideally the patient is alert.

[ReneeSusan in reply to SofiaDeo]

Yes, they will do local anesthetic, just like my first bmb. I still plan to take tylenol and a very low dose xanax as well prior. It helped the first time.

[Jooby59]

I am on the NURIX Trial on a btk degrader. I was incredibly ill when I started on it last November and 6 months later my numbers are excellent and I feel really well. I hope you get the same good results. Good luck.

[ReneeSusan in reply to Jooby59]

May I ask what your side effects were?

[Jooby59]

I don’t really experience anything and certainly absolutely nothing like I did when taking Ibrutinib or Venetoclax. I get patches of petechiae and have had a bloodshot eye on a few occasions but nothing else.

[ReneeSusan in reply to Jooby59]

Wow! So glad to hear that side effects are so much better than I or V because I have had may side effects, especially GI from Ven, calquence and pirto. I am very very happy for you. All the best to you for a long and durable remission!

[Jooby59]

My CLL has transformed into Prolymphocytic leukemia which is a very aggressive version so may never get to remission but will take feeling as well as I do. Let us know how you get on.

[ReneeSusan]

Geez, so sorry to hear. Will keep you in my thoughts and prayers. Yes, I will update when I know more. May I ask where had the trial?

[Katie-LMHC-Artist]

Thank you for sharing. Let me know how the Tylenol works. My last BMB was at Dana Farber in Boston with no sedative. It wasn’t pleasant although the nurses praised me for going through it. 😂

[ReneeSusan in reply to Katie-LMHC-Artist]

Will do.

[Katie-LMHC-Artist in reply to ReneeSusan]

Can I borrow a Xanax? Good luck with things!👩‍🦳

[bennevisplace]

May the winds blow gently for you, and in the right direction youtube.com/watch?v=x-m_7DN...(Not working as expected?)

[ReneeSusan in reply to bennevisplace]

Thank you!

[DoriZett]

Sending best wishes for easy appointments and lasting remission. I had a BMB with only local and had no issues or major discomfort. Onward!

[ReneeSusan in reply to DoriZett]

Good news!

[Txkate]

wishing you the best!

[ReneeSusan in reply to Txkate]

Thank you!

[CycleWonder]

I’ve only had one BMB (before a trial with just Pirtobrutinib as a treatment naive patient). I had local only but sincecibwas nervous, I asked for as much as he could give me. He gave me 50% more than usual, which made me feel more confident.

I never felt any pain. Tugging and I could hear the conversation. I don’t look forward to another one but the name sounds worse than the actual procedure.

Unlike eggplant, which sounded horrible to me as a child and I still decline to eat it.