After 8 months on pirto, my specialist confirmed the drug is indeed no longer working. We discussed 2 options, CAR-T (not a trial) and a BTK degrader trial at Penn. After a long explanation of how they handle the CAR-T procedure, (it is done on an outpatient basis). Along with all the major risks and side effects, and the lack of an able bodied caregiver (my husband is disabled), (I am his caregiver)while living in a residence close to the hospital for 2 months, I chose the BTK degrader trial. Unfortunately it doesn’t start till mid- July and I feel really bad. Spleen enlarged, poor appetite and now I am having stomach and spine pain. Going for pet scan just to make sure the cll hasn’t transformed which would disqualify me from the trial.
I have to say I was upset to learn that the cart procedure with the risk of cytokine release syndrome and major neurotoxicities is not done in a hospital where the patient can be monitored for for these life threatening side effects, at least the first week after receiving the modified t cells. Evidently Medicare won’t pay for an inpatient stay even though I don’t have anyone to he my caregiver.
I’d love to hear from those who had CAR-T about your exoerience. I spoke with a lovely lady from our forum who had CAR-T under a trial at Penn and thought, yes that is for me because she was an inpatient through the worst of it and was monitored and received treatment in a timely manner. When she developed some of the worst complications. I just don’t see that happening on an outpatient basis. Very upsetting, at least to me.
Anyway, I will update again after Pet Scan, Hoping I can make it to July.
Renee
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ReneeSusan, I have not received CAR-T therapy, although it had been offered to me (at Penn, in the early days of this modality) before the BTK inhibitors had shown marked activity in CLL. If you would not be admitted for the start of treatment, one plan would be to discuss admission at the first sign of cytokine release syndrome or any troublesome symptom. If you are staying close to the hospital, this would increase the feasibility. In effect, you would be admitted early on for toxicity of the treatment: a justification for admission. This plan would require discussion with the attending hematologist supervising treatment and firm commitment to see you ASAP for symptoms. And all logistics for being seen immediately and admitted for supportive care. I suspect that this is essentially the plan already in place and used by the treatment team because of the medicare policy. Even if you do not elect for CAR-T treatment now, it is something that you could consider in the future. Perhaps worth discussing with the treatment team. Wishing you all the best.
P.S., it may be helpful to know how quickly the full syndrome of cytokine release develops, that is, the earliest symptoms you may experience, and the time to more severe symptoms. Others who have received CAR-T could provide this info, in addition to the treatment team.
All was discussed and the fact that my only support person is physically disabled adds to the problem. I thought if I was admitted for the 16 days as they did in the trial, that maybe time enough to get me past some of the worst side effects. Then I may only need stay 1 month in housing, I’d still have to work out to get food and meds and back and forth to the hospital if more complications arise, as I am not allowed to drive for 6 weeks according to doc. My hubby can dial911, walks maybe 10-15 feet with great difficulty as he is paralyzed on one side, but would not be able to do more than that.
Now I understand ReneeSusan. I hope the Penn program has appealed the Medicare decision not to admit from the beginning of treatment and monitoring for this treatment. It’s a decision I don’t understand given the nature of this therapy.
This sounds a bit risky but your relationship with your Oncologist can help navigate this process more effectively. All the choices seem hard especially with your life situations. Stay prayed up & very abreast for early side effect signs. Please keep us posted & I will be praying for your success🙏🏾
Also, did the doctor mention Epcoritamab? This is a bispecific antibody. Penn is participating in this trial along with another location in New Jersey: clinicaltrials.gov/study/NC...
IDK how far you are from Penn, but I believe there are some transportation resources available. LLS, the American Cancer Society, or your state or county or city may have some. If this is the biggest problem.
On trial I was on it was in-patient for mineimum of 28 days. There was an option, that I didn't explore, that meant you could be outpatient if you were within 30 mins. Due to risk of side effects I wanted to be on-site which put nurses a bell push away, reducing risks.
My CRS was mild and caught really quickly. I think it happened five or six hrs after infusion. Drugs they gave me they told me would start having an effect within 30 mins. I would say they kicked in noticeably in 15 mins.
Have you thought of asking a to have a monitor, in your house, so that you can speak to a nurse or your team is something arises? I thought I read it somewhere when an other person had CAR-T - praying for both you and your husband
Just rotten you can't get the inpatient stay covered. I'm in a similar situation staring down what is next after all the pills fail (one option is CAR-T) and it didn't occur to me that insurance could refuse that. I'm also trying to make it to July for the next option and starting to not feel myself. I'm also looking at the Epcoritamab trial as an option for what it's worth. Hoping your scan comes back clear. Will be thinking of you. I'm local to Philly. Let me know if there is anything I can do to help.
Ellen, nvp815 and I were just talking about you a few days ago. Mainly that we haven't seen a post from you in a while and were a bit concerned . If there is anything we could offer you in the way of advice or information, please reach out. Best of luck, Steve
Thanks for the concern - I appreciate it! I'm just in a holding pattern right now. Next trip to UC is June 25. I look completely fine. Some days I'm 100% and other days I want to nap in the afternoon. Doesn't help that work is stressful right now. And I have vertigo out of nowhere. Otherwise, hanging in there.
Ellen, I occasionally get vertigo and woke with it yesterday. I use a method that quickly stops my vertigo that I found some time ago on YouTube. It was developed by Dr Carol Foster youtu.be/mQR6b7CAiqk?si=F7n...
I hope this method works for you as well. All my best wishes to you.
Hi Steve, I’ve been having a rough time. In a lot of pain. Doc thinks my spleen causing the pain, but it feels like the nodes in my abdomen making it impossible to eat much without getting superbloated. I wrote Penn and she said she’d order steroids after my scan, but that’s not till May 28. I think Im going to have a long rough road getting to the trial in July and I may need something for the pain, but doc seems unresponsive. I am also really upset, I wasn’t given more info about trials and what I did get was minimum. My doc just doesn’t spend enough time with me. I don’t need hand holding, just give me options. The CAR-T on an outpatient basis is not an option for me cause I don’t have healthy hubby and he would not be a suitable caregiver. Plus the side effects are scary and really should be managed in a hospital with the experts who know what to do in an emergency. I am totally bummed that this leaves me with 1 option and I still have to wait to see if I qualify.
Renee
If you have time for a chat today, would love to pick your brain.
It’s definitely an unsettling time for both of us. May I ask where u go for treatment and where are they holding epcortiamab trial? I asked my doc about the drug, she’s hoping it will be approved in the summer, but never mentioned a trial, at least at Penn.
I fly to Cincinnati to see Dr. Byrd. I literally could walk to Penn before I just moved (to Narberth). It's super inconvenient, esp. if I have to have a SCT or CAR-T, but I am 55 and I feel like working with him improves my odds of having a normal lifespan. He said he's hoping the trial opens in July. I think someone mentioned there might be a trial site in NJ. That trial in no picnic (you can search and find Brian Koffman's blog about it) but I'm hoping to go in that direction rather than CAR-T which is now an option as of March, or SCT.
There is a trial site for both epcoritamab and degrader ABBV-101 in New Jersey.
Sometimes different places start eariler than others. I would contact Rutgers to see if you could start the degrader sooner than Penn. They might be up and rolling already.
Hakensack Meridian Hospital is running the epcoritamab. I agree this drug will not be a cakewalk. That said, you do what you gotta do.
I’m so sorry to hear of your situation. I am actually in a similar position. However, we’re not here to talk about me.
I would think that your first order of business is to try and get some type of support to try and help you with your husband. Then you could really focus on which treatment would be best for you. You relieve that anxiety, and then your focus can address what is best for you.
I know at our cancer center in Rochester, Wilmot, there are a number of support groups and social workers who try to help with these type of arrangements. Explore what might be available from the University of Penn, or groups like the CLL society, LLS. If you reach out, you may be surprised at some of the people that will help you with your dilemma.
I hope for you all the best in resolving your most difficult situation.
One thing to consider with the spleen swelling, and side effects you mention that are typical of splenomegaly... maybe bridge treatments to get you to July. I was hospitalized for similar issues and they put me on a steroids course that temporarily reduced my ALC counts and managed my spleen swelling. They only lasted a month or two but that's all you need.
I would agree with scryer99. I would definitely ask about a bridge therapy to deal with the spleen and get you to July. Either steroids or a monoclonal antibody short course may work. But of course it all depends on how long you have to be clear of other treatments before you start the degrader. I am also in Pirtobrutinib, and waiting for that dreaded message about relapse (this is my 7th treatment). A degrader would be my choice at this moment in time.
just thinking outside the box based on my studies and convos with my docs
A dose or 2 Rituximab or Obinituzimab might just just beat it back to buy time
Same with a single round of FCR. My wbc was 228,000 and spleen into pelvis. 2 weeks after first dose of FC yielded normal cbc and spleen shrank back to normal
I'm confused, "Going for pet scan just to make sure the cll hasn’t transformed which would disqualify me from the trial", then, "Anyway, I will update again after Pet Scan, Hoping I can make it to July".
Is it the PET scan, or the results, that would be preclusive to trial acceptance? If, so why would you hope for the trial if you are doing something to bar you from participating in it?
I'm sorry this is happening for you. It seems there is a disconnect between what the medical world can offer, and the lack of reality as to if the offer can be accepted.
Keep communicating through any link you have social workers, home health aides, hospital finance, just don't give up! If you reach out an explain your story there are some very creative thinkers who may know of a work around. Not illegal or dishonest, but see a way to apply standards to fulfill requirements. They also know different different people that network in parallel programs that may have an idea.
Unfortunately, that’s all I was told. If the cll transformed I would no longer be a be candidate for the btk degrader trial. I have been given very little information and support about the trial or what comes next.
Ah, if it had transformed. Now I see clearly, makes sense. I hope you haven't transformed hang in there, I hope July puts you in a good position for the trial.
I wouldn’t completely rule out traveling to a state further away.
There is a chance you could find an oral therapy trial that would not require too many visits after the initial weeks of the trial. Maybe monthly or every two months.
If you are clever you can look at airline prices a couple months in advance. Then you could be in and out on the same day or overnight.
Agree regarding the oral med, But my biggest issue with traveling is I have a disabled husband who can not travel and can’t live alone. Plus if I needed any care, I would not have a support person with me.
Thank you very much for the valuable info. I was really feeling down today about all this. And it doesn’t help that I haven’t been able to sleep because of pain most likely my spleen and nodes. I contacted my specialist regarding the pain and still have not heard back from her. The info about the possibility of a degrader trial in NJ, has lifted my spirit. Hopefully I will hear good news soon.
On pubmed it looks like Dr. Joanna M. Rhodes is a CLL Specialist at Rutgers. She studied at Penn. Perhaps you could ask your current doctor to ask Dr. Rhodes if the degrader trial has started at Rutgers.
Thank you for and getting that info, much appreciated!
I actually got a call from Upenn yesterday afternoon from the NP of the trial. Turns out I met her 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. 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. I Unfortunately Dr. Chong at a conference May 29, when I go to Penn for results of scan, so got to go back either 30th or 31st to sign, have some some tests done and dates fir 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 for that either. When the trial starts the will be long and tiring, 12 hours first day and 8 hours day repeated for 2-3 weeks so we are planning to stay overnight each in a hotel close to the hospital to make things easier in hubby.
Lots to coordinate, but that’s ok, cause I’ve been given a great opportunity.
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