[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Sat Apr 20, 2019 1:00 pm

Arizonan,

Sorry to hear about your center’s cancellation of the study. I hope it can be restarted after safety issues are identified.

I seem to be doing well on the amoxicillin, but I will discuss longer-term antibiotic use for prophylaxis with my doctor.

Best! BN

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Tue Apr 30, 2019 8:40 pm

Last Friday was the beginning of cycle 4. I was infused all study medications and Zometa uneventfully. Also, I was given a MUGA heart test and thankfully the results were normal. I had a doctors appointment last and discussed long-term antibiotic use, which is not really a concern to her.

Best! BN

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Thu May 02, 2019 9:25 pm

Today was an uneventful day and I was able to get several naps during my infusion. All study drugs were given without any issues.

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Sat May 11, 2019 9:52 pm

Yesterday I received dex, Venclexta, Kyprolis, Aloxi (palonosetron), and Zometa. Everything was ok and uneventful. Next week I have a regularly scheduled off week, so I may not post any updates.

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Sun May 26, 2019 8:35 am

After a much needed week off, I resumed another cycle on the trial. Dexamethasone, Venclexta (venetoclax), Kyprolis, Aloxi (palonosetron) and Zometa were all administered without any adverse events. My main challenge is overcoming the severe fatigue and being able to have some sort of quality of life.

My doctor even suggested Ritalin (methylphenidate), but after taking one, I became more drowsy than ever.

We will likely not add additional drugs unless they are really effective.

Best! BN

[Beacon Staff]

Re: My Venclexta, Kyprolis & dex treatment experience

by Beacon Staff on Mon Jun 24, 2019 10:43 am

Those reading this thread may be interested to know that the U.S. Food and Drug Administration has lifted the partial clinical hold it had on the Phase 3 "CANOVA" clinical trial, which is comparing Venclexta+dex and Pomalyst (Imnovid)+dex in relapsed multiple myeloma patients who are positive for the t(11,14) chromosomal abnormality.

This press release from earlier this morning has more information about the FDA decision and some of the changes that were made to the trial protocol to get the hold lifted:

"AbbVie Announces US FDA Lifts Partial Clinical Hold On Phase 3 Study Of Venetoclax In Patients With Multiple Myeloma Positive For The t(11;14) Genetic Abnormality," AbbVie press release, June 24, 2019

Despite the FDA decision to lift the hold that was in place on this particular trial of Venclexta in myeloma, many other trials of Venclexta involving myeloma patients are still on hold, as is evident in this list of Venclexta myeloma trials at clinicaltrials.gov.

P.S. - Thanks, Bar-none, for all your updates in this thread. We're sure there are many patients and caregivers who have found them helpful.

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Thu Jun 27, 2019 5:59 pm

Hi All,

All infusion cycles have been going well. My MUGA and EKG both came back with normal readings. I am still taking a prophylactic antibiotic and have not had any infections.

The main issue I am currently addressing is severe fatigue. This week I will forego the dexa­metha­sone and monitor my fatigue.

Also, there has been some good news regarding the M-spike. The last labs (last week) showed a reduction from 0.9 range to 0.7 range.

This is hopefully a trend and should be enough to keep me in the trial.

Best! BN

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Thu Jun 27, 2019 6:10 pm

Thank you, Beacon Staff, for the information. As always, I much appreciate it. I have discussed some of these issues with other trials with my trial nurses. So far, we have not seen any of these issues at my center with my arm of the trial. I will post here if I have any other information.

Thanks! BN

[Bar-none]

Re: My Venclexta, Kyprolis & dex treatment experience

by Bar-none on Sat Jun 29, 2019 1:44 pm

Yesterday’s infusion of Kyprolis went well and was uneventful. However, in an effort to discover the cause of the fatigue, I did not take the Aloxi (palonosetron) and instead took a sublingual Zofran (ondansetron). This was a mistake as the severe nausea that was evident for most of the night was terrible.

Best! BN

[danbee46]

Re: My Venclexta, Kyprolis & dex treatment experience

by danbee46 on Wed Jul 24, 2019 8:51 pm

My wife was diagnosed with multiple myeloma about 16 months ago. She is being treated by a local oncologist and a multiple myeloma specialist. After making steady but slow progress, the specialist suggested adding Venclexta to her regimen. She would be taking Venclexta orally every morning, an injection of Darzalex every Friday, and a Velcade infusion every month. He explained that the FDA has not approved the combination of Darzalex and Venclexta because they saw too many deaths occurring. However, the doctor said he uses a much lower dose, closely monitors her blood, and has not lost a single patient in the years he has been administering the drugs.

So my wife agreed to do it. So far her recovery has been remarkably rapid. She has weekly blood tests to make sure nothing negative is happening. Every test is better than the previous one. If her rate of improvement continues, he expects that by November the cancer will still be there, but may be virtually undetectable by normal blood tests.

Our fingers are crossed that there is the proverbial light at the end of the tunnel.