I was diagnosed with t(11:14) light-chain multiple myeloma in 2010. Here is my Venclexta (venetoclax) story, so far.
I started Venclexta (400 mg) and dexamethasone (20 mg) in February 2019. It worked well and reduced my kappa free light chain level from 100 mg/dL to 15-20.
But in spring 2019 after results from the "BELLINI" clinical trial were released, my local hospital wouldn’t allow me to take Venclexta anymore. My kappa free light chain level went shooting back up to 100 mg/dL, and new big lesions appeared in my arm and vertebrae.
I contacted the myeloma center where I had a stem cell transplant in 2010 and they were very helpful and got me back on Venclexta (400 mg) and dex (20 mg) in July 2019. My kappa free light chain level went down to 10-15 mg/dL after that.
In November 2019 I decided to stop taking the dex because I was tired of the side effects, and it was ok with my oncology nurse practitioner in Tucson. Big error on my part! My kappa free light chain level started going up again! So I restarted dex at 32 mg per week and my kappa level came back down to 10-15 range.
In January 2020 I added Ninlaro (ixazomib) 4 mg and upped the Venclexta to 800 mg (dex still 20-32 mg per week) based on the recommendation of my myeloma specialist. I won’t know the effect on my kappa free light chain level for a few more weeks.
Side effects: Amazingly, none that I can attribute to Venclexta, at least so far. Not sure yet on Ninlaro, other than a very minor rash.
Bottom Line: For me as a t(11:14) patient requiring treatment, Venclexta-dex has been a very helpful alternative, with or without other drugs.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: David's Venclexta myeloma treatment experience
David,
Thank you for this post, I find it useful. I too have t(11:14) kappa light chain myeloma. I find it interesting that most patients that are t(11:14) are also light chain only or nonsecretory.
I did not go through a stem cell transplant but have been on Velcade, Revlimid, and dexamethasone (VRD) almost continuously since my initial diagnosis.
I have been following the Venclexta studies with great interest. It seems like a treatment that is specifically beneficial to our type of multiple myeloma.. The VRD treatment is beginning to run its course for me. I am on a slow rise now with my kappa free light chain level in the 70s. Once it hits 100 I will need to do something else. I hope the Venclexta will be approved soon for t(11;14) patients. I note that in the BELLINI trial, it covered a wide range of multiple myeloma patients, not just those with t(11:14). None of the patients who died were t(11;14). I also note that the FDA lifted the temporary ban for those with t(11;14).
Thank you for this post, I find it useful. I too have t(11:14) kappa light chain myeloma. I find it interesting that most patients that are t(11:14) are also light chain only or nonsecretory.
I did not go through a stem cell transplant but have been on Velcade, Revlimid, and dexamethasone (VRD) almost continuously since my initial diagnosis.
I have been following the Venclexta studies with great interest. It seems like a treatment that is specifically beneficial to our type of multiple myeloma.. The VRD treatment is beginning to run its course for me. I am on a slow rise now with my kappa free light chain level in the 70s. Once it hits 100 I will need to do something else. I hope the Venclexta will be approved soon for t(11;14) patients. I note that in the BELLINI trial, it covered a wide range of multiple myeloma patients, not just those with t(11:14). None of the patients who died were t(11;14). I also note that the FDA lifted the temporary ban for those with t(11;14).
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: David's Venclexta myeloma treatment experience
Hi David and Ron,
I, too, have kappa light chain myeloma and t(11;14), with no M-spike.
Different from Ron, I had a stem cell transplant in 2013, and have been on Revlimid and dex after a biochemical relapse in mid-2018.
I am considering a clinical trial that compares Pomalyst and dex versus Venclexta and dex. My numbers have been inching up. They are now in the 60-70 range, despite being on the full-dose 25 mg Revlimid, albeit on a 14/24 days cycle as opposed to the full 21/28 days cycle. (Unfortunately, I am having GI issues on this dose of Revlimid.)
Thanks for your post. I also find it encouraging.
I, too, have kappa light chain myeloma and t(11;14), with no M-spike.
Different from Ron, I had a stem cell transplant in 2013, and have been on Revlimid and dex after a biochemical relapse in mid-2018.
I am considering a clinical trial that compares Pomalyst and dex versus Venclexta and dex. My numbers have been inching up. They are now in the 60-70 range, despite being on the full-dose 25 mg Revlimid, albeit on a 14/24 days cycle as opposed to the full 21/28 days cycle. (Unfortunately, I am having GI issues on this dose of Revlimid.)
Thanks for your post. I also find it encouraging.
Re: David's Venclexta myeloma treatment experience
Hi TPT,
I have the GI issues and am only on 10 mg of Revlimid. I find that when it is combined with the dex that I experience it more, and I take Imodium (loperamide) to relieve the issue. I am sure my weekly shots of Velcade contribute.
Ron
I have the GI issues and am only on 10 mg of Revlimid. I find that when it is combined with the dex that I experience it more, and I take Imodium (loperamide) to relieve the issue. I am sure my weekly shots of Velcade contribute.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: David's Venclexta myeloma treatment experience
Hello David and Ron,
On the topic of GI issues, I just made a post in another forum thread with information you may find helpful. It discusses how I've found cholestyramine (Questran) helpful for these sorts of problem.
Also, if you or anyone else here wants more information on this topic, there are lots of threads in the forum with advice and studies related to GI issues, particularly those due to myeloma treatments such as Revlimid.
On the topic of GI issues, I just made a post in another forum thread with information you may find helpful. It discusses how I've found cholestyramine (Questran) helpful for these sorts of problem.
Also, if you or anyone else here wants more information on this topic, there are lots of threads in the forum with advice and studies related to GI issues, particularly those due to myeloma treatments such as Revlimid.
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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
Re: David's Venclexta myeloma treatment experience
Thanks, Nancy. I will mention that to my oncologist. My concern is that I have high cholesterol that is genetic and take 40 mg of atorvastatin (Lipitor) daily. Questran is a cholesterol-lowering drug, so I need to make sure that the two in combination would not cause other issues.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
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