An update to what I would have described as a failed Stem Cell Transplant has actually been a part success- I don’t seem to have any sign of CLL but instead I am back to SLL status which is what I was initially diagnosed with 10 years ago.
The scans post transplant show enlarged nodes but bloods are going well and in the normal range.
I was fortunate to have two Haematologists from two different hospitals looking out for me as to what treatment next- this is of course limited in clinical trials as I do not qualify for a lot of them. Lymphocytes from the original donor were requested and received however after consultation with other Heams from around the country and globe-a clinical trial would be preferable as there would still be a risk of GVHD
So I’m here today in Perth, Western Australia at a clinic on a trial using “BGB-16673-104” in combination with Zanubrutinib.
So being a layman that’s a degrader and a BTK inhibitor working together to shut this thing down!
I’m number 1 in this trial at this clinic so would be really interested to hear from anyone else in Australia or overseas that may have had this BGB trial drug on its own or any other treatment post transplant.
I try to keep my head up most of the time, but the thought of another round of treatment ( this is my 5th now and involves long travel) got me down a little and so I told the Clinical Trial Doctor I felt like a lab rat, and she said you should feel like a trailblazer, how a thought or attitude can really change one’s perspective! 🤞
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Billarina
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Billarina, I hope this trial works for you well. As you are aware of the difference between CLL & SLL my comment is not directed at you, rather, it is to assist new ones that it there is not a hierarchy between the two.
I was under the impression when first diagnosed that I had drawn the short straw, until my doctor disabused me of that error quite the relief.
Well, tell us as you can about this journey if it was successful we can point to one person, who after one of the most drastic measures proving partially unsuccessful does have hope.
On a side note, your feelings of being lab rat-cum-trailblazer (Latin not a vulgarity), is not unrelatable. I worked with a man who was a career airline pilot and in crosswind situations he often got tired of being the one to "blaze a trail". It was a gnawing exhaustion from being the one to try it first. Don't let the primacy of the attempt get you down, express it and then press on.
Thank you for your words, I did like that you used the word gnawing and wandered if it was tongue in cheek joke about “Lab rats” 😹even if not I had a chuckle. And I especially like ‘lab rat -cum - trailblazer ‘we don’t use Latin enough!
I was a little confused with the status of my diagnosis post transplant, when after months of tests and biopsies it was just my enlarged lymph nodes I posed the question to the consultant and said “ am I back to SLL “ and she said yes but not in the watch and wait period, my nodes were growing at a rapid pace so hence treatment started.
I come to this group for knowledge, so I’m grateful when people like yourself add notes in to help others, as it helps me too.
First, I wish I was inspired to think of gnawing in that context, but alas, it was just my fickle brain landing on a description. I'm glad you got a chuckle though, as I have learned to say having a sense of humor is having a sense of human.
We are all traveling this road together, we're just in different lanes or we pull off at other rest stops along the way. My CLL/SLL was found mostly by the enlarged lymph nodes and spleen through an incidental CT scan. But, my blood work confirmed it to be CLL as my hematologist/oncologist diagnosed it.
Our disease is like real estate, it's all about location, location, location, same drugs, same B symptoms, same staging. So, my doctor said call it CLL more doctors will know what you're talking about.
You too will be able to share and it will be so helpful to the person that receives it. I look forward to your successful journey.
You've had your share of treatment, Billarina, so it's no wonder you were feeling apprehensive about starting on another therapy but I'm glad your clinical trial doctor encouraged you to think a little differently about your situation.
You have probably done some research about BGB-16673 but I thought a summary of what we already know couldn't hurt and it may assist others who read this.
It's already shown very promising results in an early clinical trial where it was used as a mono therapy, so much so that it received FDA Fast Track Designation in August this year. healthunlocked.com/cllsuppo...
Earlier data was presented at last year's ASH conference and, on that occasion, Prof John Seymour from Peter MacCallum Cancer Centre in Melbourne provided a summary in this VJHemOnc video:
There's also a link in this post to a CLL Society article about the degrader from October this year that includes a video : healthunlocked.com/cllsuppo...
I think that the trial you've been recommended is non randomised with two arms: the one you describe (BGB-16673 plus zanubrutinib) and another being BGB-16673 plus sonrotoclax, a new BCL-2 inhibitor. clinicaltrials.gov/study/NC... (no site locations listed yet).
I hope you'll take heart from the fact that this degrader, BGB-16673, has worked well in the Phase I/2 setting for so many difficult to treat 'double refractory' patients who've had many prior lines of therapy, including some, I believe, in Perth.
There may be others here who have experienced BGB-16673 at some stage or who have had another therapy after a transplant who will be able to reply to your specific questions but you might consider locking your post to encourage their involvement. You can read more about locked/unlocked posts here: healthunlocked.com/cllsuppo...
For now, I just want to wish you all the very best as you embark on your next treatment and, yes, you really are blazing a trail for us to follow.
Thank you so much for adding on the video, that was really good to hear. The the other arm of the trial you mention with Sonrotoclax is also happening at the same clinic I’m attending, I will reach out and see if there is an opportunity to meet other people at the clinic, but there is patient confidentiality and different appointment times I guess.
Thank you also for the info on locked posts, I will read up and do as you suggest. I really appreciate your information, I have a lot going on in my life with a young daughter and don’t always have time to read up a lot on the treatments available. I’m very fortunate to have an amazing team in Perth who are always looking out for me.
I can only imagine how you're managing to juggle a young daughter with your own medical issues so I'm pleased to hear that you have such a supportive medical team looking after you.
It's good that we have CLL experts in so many more places around the country now and it's great that there are some in Perth who are involved in trials that are bringing new treatments to you there, too.
If you get time down the track and you want to let us know how you're getting on, there'll always be someone here to offer support and understanding if you need it and you'll be adding to our knowledge about a new treatment, too.
Billerina, I'm so sorry to hear about the results of your transplant. I really pray and hope the trial is successful, you are definitely a trailblazer ❤️
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