This week was routine Aloxi and Kyprolis. I have been taking 40 mg of dexamethasone on infusion days and also my regular 800 mg of daily Venclexta (venetoclax).
Taking the dexamethasone a little earlier in the morning seems to help me sleep better.
Best! BN
Forums
Re: My Venclexta, Kyprolis & dex treatment experience
This week was my off week from the infusion of Kyprolis. However, on Thursday afternoon I started coughing, shaking with chills and spiking a 102 F (38.9 C) fever. My primary care doctor tested for flu and strep and both were negative. She recommended due to my complications that I think about going to the emergency room for more tests. This started 10 very painful hours in the Emergency Room waiting while more acutely ill patients were treated (understandably so) and I was triaged to the next day.
After all lab work and chest x-rays came back negative, the supervisor physician came in around 2:00 a.m. and asked me to please stay for one more test., a CT scan of my chest area. It was on the result of this test that a small area of pneumonia that did not show on the chest X-ray was seen. This solved the mystery and I was sent home with an azithromycin (Zithromax) dose pack.
I’m very glad I was properly tested, diagnosed, and treatment started.
After all lab work and chest x-rays came back negative, the supervisor physician came in around 2:00 a.m. and asked me to please stay for one more test., a CT scan of my chest area. It was on the result of this test that a small area of pneumonia that did not show on the chest X-ray was seen. This solved the mystery and I was sent home with an azithromycin (Zithromax) dose pack.
I’m very glad I was properly tested, diagnosed, and treatment started.
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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
If you ever need to go to the Emergency Room again, let the triage staff know you have multiple myeloma. They may be able to get you out of the waiting room promptly. My husband's oncologist gave him a card to show so he would not have to sit there exposed to everything under the sun.
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DaleJC28117 - Name: Dale
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2016
- Age at diagnosis: 57
Re: My Venclexta, Kyprolis & dex treatment experience
Hi Bar-none,
Thanks for your updates in this thread. Threads like these are really valuable to the Beacon's readers, so we appreciate your taking the time to share your treatment experience here.
You may already have heard this news, but the company that markets Venclexta in the U.S., AbbVie, today announced that the U.S. Food and Drug Administration (FDA) has placed a partial hold on all clinical trials testing Venclexta in multiple myeloma patients.
The FDA took this action after a planned safety review involving data from a trial comparing Venclexta, Velcade, and dexamethasone to placebo, Velcade, and dexamethasone. The review found that there were noticeably more treatment-related deaths in patients receiving Venclexta.
It's our understanding that the partial hold means that recruitment into the Venclexta myeloma trials will be halted, at least temporarily, but patients currently enrolled in the trials probably will be allowed to continue receiving their treatment regimens, if they wish to do so. We're sure, though, that you'll be given an opportunity to discuss the matter with your treatment team.
Here is a link to the press release about the Venclexta news:
"AbbVie Provides Update On Venclexta/Venclyxto (Venetoclax) Multiple Myeloma Program," AbbVie press release, March 19, 2019
Good luck!
Thanks for your updates in this thread. Threads like these are really valuable to the Beacon's readers, so we appreciate your taking the time to share your treatment experience here.
You may already have heard this news, but the company that markets Venclexta in the U.S., AbbVie, today announced that the U.S. Food and Drug Administration (FDA) has placed a partial hold on all clinical trials testing Venclexta in multiple myeloma patients.
The FDA took this action after a planned safety review involving data from a trial comparing Venclexta, Velcade, and dexamethasone to placebo, Velcade, and dexamethasone. The review found that there were noticeably more treatment-related deaths in patients receiving Venclexta.
It's our understanding that the partial hold means that recruitment into the Venclexta myeloma trials will be halted, at least temporarily, but patients currently enrolled in the trials probably will be allowed to continue receiving their treatment regimens, if they wish to do so. We're sure, though, that you'll be given an opportunity to discuss the matter with your treatment team.
Here is a link to the press release about the Venclexta news:
"AbbVie Provides Update On Venclexta/Venclyxto (Venetoclax) Multiple Myeloma Program," AbbVie press release, March 19, 2019
Good luck!
Re: My Venclexta, Kyprolis & dex treatment experience
Thanks so much for posting this, I had not seen it yet. Tomorrow is my day to meet with my treatment team and I will be discussing this.
Best BN
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
Since I was still running a fever, I returned to my primary care doctor for a follow-up chest x-ray and checkup. Her finding was that the pneumonia was slightly worse. She recommended that, due to my situation, I check in to the hospital for IV antibiotic administration. I followed her advice and spent two nights there. Upon release, I was feeling much better. The doctor has cleared me to proceed with my infusion this week.
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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 week my infusion went smoothly. Dexamethasone, Venclexta (venetoclax) and Kyprolis with Aloxi (palonosetron) were all given. Due to the above referenced bulletin, my protocol now includes a prophylactic antibiotic. I am now taking a 500 mg dose of amoxicillin twice a day for infection prevention.
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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
DaleJC28117 wrote:
I was going to suggest the same thing. Your primary should have known this as well. I believe you're already considered an admitted patient if you have multip0le myeloma and are being regularly treated. No way should you have to sit in emergency, immunocompromised like you are, and expose yourself to the pathogens flying around most ER's.
Next time you're in the oncology office, perhaps you can ask them how you can get directly admitted in the future.
One other thing I'm going to mention here, and this is anecdotal, so take it for what it's worth, it's been our experience that Kyprolis crashes platelet counts far more heavily than is often communicated about the drug. Many trials have platelet minimums (usually 50k range min), and I have seen this drug keep people from qualifying for trials for CAR T-cell therapy and other treatments.
As we know, everyone is different, and every multiple myeloma patient experiences things differently, but this is something I would keep in mind if you're on the Kyprolis. They've been messing around with the doses (two 20's a week, one 70 a week, two 50's a week, etc.) so be sure to ask about dosing and pay attention to how it relates to your counts. I consider it a good drug, but I get the sense there are a lot of variations within the treatment that can cause some pretty big swings in your labs, sometimes alarmingly so.
If you ever need to go to the Emergency Room again, let the triage staff know you have multiple myeloma. They may be able to get you out of the waiting room promptly. My husband's oncologist gave him a card to show so he would not have to sit there exposed to everything under the sun.
I was going to suggest the same thing. Your primary should have known this as well. I believe you're already considered an admitted patient if you have multip0le myeloma and are being regularly treated. No way should you have to sit in emergency, immunocompromised like you are, and expose yourself to the pathogens flying around most ER's.
Next time you're in the oncology office, perhaps you can ask them how you can get directly admitted in the future.
One other thing I'm going to mention here, and this is anecdotal, so take it for what it's worth, it's been our experience that Kyprolis crashes platelet counts far more heavily than is often communicated about the drug. Many trials have platelet minimums (usually 50k range min), and I have seen this drug keep people from qualifying for trials for CAR T-cell therapy and other treatments.
As we know, everyone is different, and every multiple myeloma patient experiences things differently, but this is something I would keep in mind if you're on the Kyprolis. They've been messing around with the doses (two 20's a week, one 70 a week, two 50's a week, etc.) so be sure to ask about dosing and pay attention to how it relates to your counts. I consider it a good drug, but I get the sense there are a lot of variations within the treatment that can cause some pretty big swings in your labs, sometimes alarmingly so.
Re: My Venclexta, Kyprolis & dex treatment experience
Bar-none,
Glad to hear they are letting you continue on the Venetoclax.
In my case, I’m t(11;14) and was doing great on Venclexta 400 mg and dex 12 mg. But the hospital cancelled it today (because of their liability they say) due to the results from the clinical trial of 800 mg Venclexta, 80 mg dex, and Velcade. It's my sense, though, that most myeloma specialists treating patients with Venclexta are leaving current patients on it, but not giving it as new therapy.
Your doctor’s approach of adding an antibiotic seems like a reasonable approach.
Let’s hope, for all of our sakes, they can figure out why the one Venclexta-Velcade-dex study went badly.
Good luck to you,
David
Glad to hear they are letting you continue on the Venetoclax.
In my case, I’m t(11;14) and was doing great on Venclexta 400 mg and dex 12 mg. But the hospital cancelled it today (because of their liability they say) due to the results from the clinical trial of 800 mg Venclexta, 80 mg dex, and Velcade. It's my sense, though, that most myeloma specialists treating patients with Venclexta are leaving current patients on it, but not giving it as new therapy.
Your doctor’s approach of adding an antibiotic seems like a reasonable approach.
Let’s hope, for all of our sakes, they can figure out why the one Venclexta-Velcade-dex study went badly.
Good luck to you,
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: My Venclexta, Kyprolis & dex treatment experience
Once again, all study drugs were infused uneventfully. Also, I received the good news that my M-spike continues to go down. Last lab tests reported 0.91 g/dL.
This week is an off week for me, and I’m looking forward to spending some time with family for Easter.
Best! BN
This week is an off week for me, and I’m looking forward to spending some time with family for Easter.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
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