My husband started 25 mg Revlimid 21 days every 28, and 20 mg dex once a week. After one cycle, we added Ninlaro 4 mg to the mix once a week for 3 weeks out of 4. He's just completed his 3rd cycle of Revlimid and second cycle of the triplet.
He'd relapsed with a plasmacytoma in August after 18 months with no maintenance. He had radiation on that, but his light chains and proteins started rising, so he went back on treatment.
During his induction treatment he did 5 cycles of cyclophosphamide, Velcade, and dexamethasone (CyBorD), which gave him neuropathy, gastric problems, and damaged his lungs. It did put him in complete remission (CR) without a transplant, but at a heck of a cost.
He takes the dexamethasone in the morning with breakfast, and the Revlimid and Ninlaro in the evening an hour before dinner.
So far, so good. His monoclonal proteins which were at 2 are virtually undetectable. The light chain ratio is normal, and the kappa and lambda chains, while both still high, have come down. No signs so far of neuropathy. No fatigue. His bloodwork shows him mildly anemic at the end of the 3 weeks, but he bounces back into low normal during his off week. He's had some constipation and diarrhea, but easily controlled.
He was taking 8 gm of curcumin daily and continues to do that. He also takes lingzhi daily. We're going to add ashwagandha which has been shown in some studies to be effective against chemo-induced neutropenia. Given how hard his treatment regimen hit him last round and how easily (so far, knock on wood) this has been, the supporting herbs are staying in the protocol.
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LisaE - Name: Lisa
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: April 2014
- Age at diagnosis: 67
Re: Ninlaro (ixazomib) - what to expect?
I am finishing up my first round of Ninlaro 4 mg. I also take Revlimid and dexamethasone. I had been on the Revlimid and dex for 6 months prior, but wasn't improving, so they added Ninlaro. Last night I took my 3rd pill of the month and woke up this morning severely nauseated. Vomited 4 times. My doctor prescribed 8 mg Zofran (ondansetron), Zolfran worked almost immediately. I finally was able to drink some ginger ale, The first two doses of Ninlaro did not bother me. I will have to see what happens on the next cycle. Good Luck!
Re: Ninlaro (ixazomib) - what to expect?
Hello all,
I just wanted to throw in my two cents worth on the Ninlaro. I was on Pomalyst 4 mg, subcutaneous Velcade, and 20 mg of dexamethasone once per week. Everything was going along pretty well and stable. Then I started to have an increase in my IgA and my M-spike increase was concerning to my oncologist. So he said, lets go with the Ninlaro in place of the Velcade.
The Ninlaro did almost nothing to control my rising numbers in 3 rounds. They went up on every lab result.
So now I am on Pomalyst, Kyprolis, and dexamethasone. Pomalyst 4 mg 21 of 28 days, dexamethasone 20 mg 1/2 hour to 4 hours before each infusion of Kyprolis. Two infusions per week for 3 weeks. Then one week off.
So far this combo has really knocked back my numbers. I am on the first week of my second round. Just hope it continues this way. Stem cell transplant is coming up in May.
Kind of strange how some drugs work well for some and not others.
I just wanted to throw in my two cents worth on the Ninlaro. I was on Pomalyst 4 mg, subcutaneous Velcade, and 20 mg of dexamethasone once per week. Everything was going along pretty well and stable. Then I started to have an increase in my IgA and my M-spike increase was concerning to my oncologist. So he said, lets go with the Ninlaro in place of the Velcade.
The Ninlaro did almost nothing to control my rising numbers in 3 rounds. They went up on every lab result.
So now I am on Pomalyst, Kyprolis, and dexamethasone. Pomalyst 4 mg 21 of 28 days, dexamethasone 20 mg 1/2 hour to 4 hours before each infusion of Kyprolis. Two infusions per week for 3 weeks. Then one week off.
So far this combo has really knocked back my numbers. I am on the first week of my second round. Just hope it continues this way. Stem cell transplant is coming up in May.
Kind of strange how some drugs work well for some and not others.
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Ninlaro (ixazomib) - what to expect?
I hadn't updated my posts recently about EJs experiences with Ninlaro. Today we got the news that he's had a complete response, and his M-spike is undetectable.
EJ started treatment with Ninlaro, Revlimid and dexamethasone in February, 2016, but had a hard time staying on treatment. He had to discontinue treatment multiple times for rashes (to an antibiotic), high fever, gallbladder removal, and a ruptured retina. He finally stopped taking Nanlaro, Revlimid, and dex in November, 2016 when his M-spike bottomed out at 0.2 g/dl (2 g/l) for two months in a row.
He's been on Revlimid for maintenance since January, 2017. His M-spike has continued to fall, slowly, even when he took a few days off the drugs for cataract surgery.
Lyn
EJ started treatment with Ninlaro, Revlimid and dexamethasone in February, 2016, but had a hard time staying on treatment. He had to discontinue treatment multiple times for rashes (to an antibiotic), high fever, gallbladder removal, and a ruptured retina. He finally stopped taking Nanlaro, Revlimid, and dex in November, 2016 when his M-spike bottomed out at 0.2 g/dl (2 g/l) for two months in a row.
He's been on Revlimid for maintenance since January, 2017. His M-spike has continued to fall, slowly, even when he took a few days off the drugs for cataract surgery.
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Ninlaro (ixazomib) - what to expect?
I thought I would share my experience with Ninlaro in the hopes that it helps others.
I was diagnosed with first lambda light chain MGUS, no M-spike, in 2012. I have been being followed by a specialist at Cedar Sinai since that time. No symptoms, so no treatment.
In May of 2016 I suffered a debilitating episode of vertigo after 6 months of one infection after another. My doctor put me on dexamethasone and Revlimid from May 2016 to March 2017. My light chain numbers did not budge, in fact went up twice. This March my doctor added Ninlaro. Within a month my light chain number went from 900 to 112. In April my doctor eliminated the Revlimid and kept me on Ninlaro and my numbers went down to 43 and this month they are in the normal range of 6. I am now off of the dex too for now. Even though my numbers are in the normal range, my doctor is keeping me on Ninlaro still.
The side effects I have usually start with the 2nd of the 3 pills per month. They include low platelets, nausea / vomiting, but controlled with Zofran (ondansetron). Hand / foot syndrome, which happens sometimes with anti-cancer meds, and my big toe is numb. Other than these few nuisances, very tolerable and effective. I have started riding my bike again and just rest when I am tired. I hope to be in remission for awhile.
Please let me know if I can provide any feedback from personal experience. Take care all to you and your love be ones.
I was diagnosed with first lambda light chain MGUS, no M-spike, in 2012. I have been being followed by a specialist at Cedar Sinai since that time. No symptoms, so no treatment.
In May of 2016 I suffered a debilitating episode of vertigo after 6 months of one infection after another. My doctor put me on dexamethasone and Revlimid from May 2016 to March 2017. My light chain numbers did not budge, in fact went up twice. This March my doctor added Ninlaro. Within a month my light chain number went from 900 to 112. In April my doctor eliminated the Revlimid and kept me on Ninlaro and my numbers went down to 43 and this month they are in the normal range of 6. I am now off of the dex too for now. Even though my numbers are in the normal range, my doctor is keeping me on Ninlaro still.
The side effects I have usually start with the 2nd of the 3 pills per month. They include low platelets, nausea / vomiting, but controlled with Zofran (ondansetron). Hand / foot syndrome, which happens sometimes with anti-cancer meds, and my big toe is numb. Other than these few nuisances, very tolerable and effective. I have started riding my bike again and just rest when I am tired. I hope to be in remission for awhile.
Please let me know if I can provide any feedback from personal experience. Take care all to you and your love be ones.
Re: Ninlaro (ixazomib) - what to expect?
I am 74 years old and started treatment with a 4.2 g/dL (42 g/l) M-spike. I had no bone issues or pain other than arthritis, which is not significantly uncomfortable of debilitating in any way. After completing 4 cycles of treatment with Revlimid, dexamethasone, and Velcade injections (along with monthly Zometa infusions), there was a significant response in my multiple myeloma. I continued with Revlimid and dex (and Zometa) for 3 more months. Response to treatment was such that I was a candidate for a stem cell transplant, which I chose not to do, and opted for Ninlaro, 4 mg, dex ,20 mg. 3 times per month, and an Xgeva injection every 3 months.
All of my lab work indicates that I am back to "normal" health with everything in range and an M-spike that is undetectable. I have been on the Ninlaro and dexamethasone regimen for 6 months with no side effects except fatigue on the second day after starting each cycle.
My translocation was t(4:14), which puts me in what I believe is the more treatable category.
Hopefully, my story will help someone who is considering options for treatment and give them information that they can discuss with their doctor regarding treatment.
All of my lab work indicates that I am back to "normal" health with everything in range and an M-spike that is undetectable. I have been on the Ninlaro and dexamethasone regimen for 6 months with no side effects except fatigue on the second day after starting each cycle.
My translocation was t(4:14), which puts me in what I believe is the more treatable category.
Hopefully, my story will help someone who is considering options for treatment and give them information that they can discuss with their doctor regarding treatment.
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smk74
Re: Ninlaro (ixazomib) - what to expect?
I was on Ninlaro, Revlimid, and dexamethasone for about 6-8 months. I have IgA Kappa. The Ninlaro regimen almost immediately dropped my IgA into the normal range. My first treatment in 2010 was Velcade, which also was very effective for me. I got peripheral neuropathy, though, but then had no treatment for 4+ years.
Good luck
Good luck
Re: Ninlaro (ixazomib) - what to expect?
I just finished my second cycle of Ninlaro. I take it with dexamethasone and Revlimid. I’m not experiencing any side effects from the Ninlaro so far.
I guess it’s too early to expect any results, but I am hopeful. I will stay tuned to this thread and report the results in the future.
I guess it’s too early to expect any results, but I am hopeful. I will stay tuned to this thread and report the results in the future.
Re: Ninlaro (ixazomib) - what to expect?
I have been on Ninlaro for 5 months and have very little side effects.
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barbara1200 - Name: barb
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2013
- Age at diagnosis: 75
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