After nearly five years in complete remission, my labs are now telling us that it’s time to address disease progression. At my last appointment, my myeloma specialist mentioned the positive results participants in a trial of Venclexta (venetoclax), Kyprolis (carfilzomib), and dexamethasone are having.
While I’m still in the prescreening phase to see if I qualify, there is also an expanded access program offering for those who don’t.
I have been randomly placed in the 800 mg Venclexta oral tablet group. I'll started my washout period yesterday.
If I am successful in qualifying for the clinical trial, I will try to post my experiences here.
Best! BN
Forums
Re: My Venclexta, Kyprolis & dex treatment experience
Yes, please keep updating! I have heard mixed reviews on this and it's probably our next option, so please let us know how things go for you. Is Venclexta and Velcade also an option for you, or just with Kyprolis?
Re: My Venclexta, Kyprolis & dex treatment experience
For this clinical trial (NCT02899052 - Study of Venetoclax in Combination With Carfilzomib and Dexamethasone in Subjects With Relapsed or Refractory Multiple Myeloma), Velcade is not an option. There is an older trial that evaluated Venclexta together with Velcade and dexamethasone, but it is no longer recruiting participants.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
I spent yesterday at the clinic doing my pre-screening tests. After turning in another 24-hour urine jug and giving way too many vials of blood, I spent a couple of hours doing a MUGA cardiac test. Then walked down the way and had an EKG done.
I was scheduled for a bone marrow biopsy but found out I needed a couple of days off of Xarelto (rivaroxaban) to wash it out of my system prior to the test. So it will be scheduled later in the week.
Best! BN
I was scheduled for a bone marrow biopsy but found out I needed a couple of days off of Xarelto (rivaroxaban) to wash it out of my system prior to the test. So it will be scheduled later in the week.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
After taking 2 days off of the Xarelto (4ivaroxaban), we were able to proceed with the bone marrow biopsy, which was the final prescreening test. I elected to use Ativan (lorazepam) this time in addition to a local. This significantly delayed the procedure because there are waiting periods to order the drug and administration delays. I’m not sure the extra time was worth it.
The following day, I was able to start the first infusion of Kyprolis, it was given with 8 x 100 mg of oral Venclexta (venetoclax) and 40 mg oral dexamethasone. The actual infusion only took about 30 minutes, during which I met with the RN study coordinator, who gave me my diary and my calendar. Everything was clearly explained. Provided all goes well, there will be 18 cycles of one month each.
Currently the nice immediate benefit is that I’m no longer managing the severe diarrhea which Revlimid caused.
The following day, I was able to start the first infusion of Kyprolis, it was given with 8 x 100 mg of oral Venclexta (venetoclax) and 40 mg oral dexamethasone. The actual infusion only took about 30 minutes, during which I met with the RN study coordinator, who gave me my diary and my calendar. Everything was clearly explained. Provided all goes well, there will be 18 cycles of one month each.
Currently the nice immediate benefit is that I’m no longer managing the severe diarrhea which Revlimid caused.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
The first adverse event has happened. It’s a urinary tract infection (UTI) with bleeding. I’m not running a fever, so I am thankful for that. I have been started on Bactrim (sulfamethoxazole and trimethoprim) 160 mg once a day after dong a urine culture that may change. Results will be in tomorrow. I have had these before the trial which was symtomatic identically to this one. So it May not be related to Venclexta. I am also pushing fluids profusely and expect to have my Kyprolis infusion on schedule, but we will see.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
Today was my second Kyprolis infusion (followed by a Zometa infusion). The Kyprolis infusion was uneventful, and I was feeling better since the urinary tract infection is now under control, and I am no longer bleeding.
My doctor told me it may take a month (1 cycle) to see any significant decrease in my M-spike, free light chains, etc.
My doctor told me it may take a month (1 cycle) to see any significant decrease in my M-spike, free light chains, etc.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
Currently my infusion consists of Zofran (ondansetron), Kyprolis, and Zometa, in that order.
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
This morning I took 40 mg of dex orally and 800 mg of Venclexta also orally.
Today was infusion day so we arrived an hour early for lab work and I received Zofran (ondansetron) for nausea and Kyprolis. I am on the higher dose of Kyprolis (27 mg/m2).
As a side note, it is nice to see my skin and hair appearing less dry. It may be due to the discontinuation of the Revlimid, but I'll take it!
Today was infusion day so we arrived an hour early for lab work and I received Zofran (ondansetron) for nausea and Kyprolis. I am on the higher dose of Kyprolis (27 mg/m2).
As a side note, it is nice to see my skin and hair appearing less dry. It may be due to the discontinuation of the Revlimid, but I'll take it!
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: My Venclexta, Kyprolis & dex treatment experience
i have not taken Venetoclax, but heard it discussed recently. An abstract on a phase 1 trial in multiple myeloma appeared in the journal Blood:
Blood 2017 :blood-2017-06-788786; doi: https://doi.org/10.1182/blood-2017-06-788786
it is an interesting new type of drug since it attacks the mechanism where cancer cells avoid cell death. It has also been used in AML (acute myeloid leukaemia). The target is the 'anti apoptic protein', BCL-2. 'Apopsis' means the death of the cell.
Wishing you good luck in your clinical trial, Bar-None!
Blood 2017 :blood-2017-06-788786; doi: https://doi.org/10.1182/blood-2017-06-788786
it is an interesting new type of drug since it attacks the mechanism where cancer cells avoid cell death. It has also been used in AML (acute myeloid leukaemia). The target is the 'anti apoptic protein', BCL-2. 'Apopsis' means the death of the cell.
Wishing you good luck in your clinical trial, Bar-None!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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