Thank you for all your suggestions.
My husband's doctor is trying Kyprolis on David right now. He's had 3 treatments twice a week and 1 week off. There is a mass in his back and a couple of new lesions. Radiation has started and he's feeling better – at least to the point where he doesn't have to use a cane.
David is a 13-year survivor of this disease. He has taken VAD (vincristine, doxorubicin, and dexamethasone) when he was diagnosed initially, and the numbers went down so low that he had a stem cell transplant. That put him in remission for 2 years. Then good ole myleloma reared its ugly head, so he was put on a curcumin trial, which didn't work. Then Revlimid, which caused a heart attack. Finally, David was put on Velcade and dexamathasone. This combo worked well for almost 3 years!
Then just last year, after bouts with pneumonia, salmonella, no chemo was given until these issues could be addressed. Needless to say, his kappa and IgG numbers went way up. Pomalyst (pomalidomide, Imnovid) and dex were given to him for almost a year. Didn't help. Darzalex (daratumumab), same thing.
Now, he's on Kyprolis (carfilzomib) and dex. It seems encouraging because his kappa has gone down, but the IgG has not. The doctor said its still early but he seemed very encourage. My thought is because Krypolis is in the same family as Velcade, just maybe David will respond as well as he did with Velcade.
This is where we're at. Except for the pain in his back, low energy and shortness of breath, I have hope that David will stay with me here on earth a little bit longer.
I have written down all the drugs some of you have posted and they will stay in my 'little black book' for future reference. You all gave me hope.
God Bless all of you, myeloma warriors and caregivers!!
Jojo
Forums
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Jojo - Name: Jojo
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2003
- Age at diagnosis: 51
Re: Darzalex (daratumumab) not working - what next?
Hi Jojo,
I am sorry to hear about David's predicament. I hope the Kyprolis works. Very generally, you should go to the major center nearest you (and a couple of others, if possible) and look at the availability of clinical trials. New drugs under clinical trials right now may be what David needs, given that he has relapsed multiple times, and some of the drugs have stopped working, or have become refractory. Those newest drugs are most frequently made available to patients in the relapsed / refractory setting (RRMM). For example, there are a number of CAR-T clinical trials opening for multiple myeloma. At the center where my wife is treated (Sloan Kettering in New York), they announced a CAR-T trial opening up next year. I recall having read there will be several others as well, I believe they include Dana Farber in Boston and MD Anderson in Texas.
At the top of the Beacon news page, there is a list of new treatments under development as potential treatments for multiple myeloma. Here is a list of the drugs:
ARRY-520 (filanesib), ACY-1215 (ricolinostat), afuresertib (GSK2110183), BT-062, isatuximab (SAR650984), Keytruda (pembrolizumab), marizomib (NPI-0052), melflufen, MOR202, oprozomib, selinexor (KPT-330), Treanda (bendamustine), Venclexta (venetoclax, ABT-199) and Zolinza (vorinostat).
Good luck to you and David.
I am sorry to hear about David's predicament. I hope the Kyprolis works. Very generally, you should go to the major center nearest you (and a couple of others, if possible) and look at the availability of clinical trials. New drugs under clinical trials right now may be what David needs, given that he has relapsed multiple times, and some of the drugs have stopped working, or have become refractory. Those newest drugs are most frequently made available to patients in the relapsed / refractory setting (RRMM). For example, there are a number of CAR-T clinical trials opening for multiple myeloma. At the center where my wife is treated (Sloan Kettering in New York), they announced a CAR-T trial opening up next year. I recall having read there will be several others as well, I believe they include Dana Farber in Boston and MD Anderson in Texas.
At the top of the Beacon news page, there is a list of new treatments under development as potential treatments for multiple myeloma. Here is a list of the drugs:
ARRY-520 (filanesib), ACY-1215 (ricolinostat), afuresertib (GSK2110183), BT-062, isatuximab (SAR650984), Keytruda (pembrolizumab), marizomib (NPI-0052), melflufen, MOR202, oprozomib, selinexor (KPT-330), Treanda (bendamustine), Venclexta (venetoclax, ABT-199) and Zolinza (vorinostat).
Good luck to you and David.
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JPC - Name: JPC
Re: Darzalex (daratumumab) not working - what next?
Joe,
An M-spike of 0.25 g/dL (2.5 g/l) is still very low. It must have been some other markers that made your oncologist decide to use Darzalex. Generally, patients with M-spikes that low, assuming serum free light chain (sFLC) and other markers are in the normal range, would not even by undergoing treatment unless they had one of the CRAB features.
An M-spike of 0.25 g/dL (2.5 g/l) is still very low. It must have been some other markers that made your oncologist decide to use Darzalex. Generally, patients with M-spikes that low, assuming serum free light chain (sFLC) and other markers are in the normal range, would not even by undergoing treatment unless they had one of the CRAB features.
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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: Darzalex (daratumumab) not working - what next?
Hi,
I have myeloma for 5 years. I had 4 fractures of the spine. For 4 years I tried many different drugs and a stem cell transplant that lasted 2 weeks. Only thing left was a trial drug called panobinostat (Farydak). Finally that worked. Brought my M-spike down 5.08 g/dL to 0. Lasted 16 months, which was great. Also no side effects.
So then my M-spike started drifting up to 0.88 and my kappa light chain from 25 to 50. Doctor said we need to nip this in the bud, put me on this Darzalex for a month with Pomalyst. I stopoed the Pomalyst because I also have COPD and I was having breathing problems. So I and now just using Darzalex every other week. My 12th infusion M-spike, it went down from 0.88 to 0.50 to 0.28 to 0.25. Latest is today's result, was 0.22. Thank Lord no side effects. Hope it continues and I get back to 0 M-spike.
I see doctor on November 8 so I'll see if he goes back to using Pomalyst or another drug with Darzalex.
I hope this answers any questions. Let's hope 2017 brings a cure for myeloma and all cancers.
Thank you, Joe
I have myeloma for 5 years. I had 4 fractures of the spine. For 4 years I tried many different drugs and a stem cell transplant that lasted 2 weeks. Only thing left was a trial drug called panobinostat (Farydak). Finally that worked. Brought my M-spike down 5.08 g/dL to 0. Lasted 16 months, which was great. Also no side effects.
So then my M-spike started drifting up to 0.88 and my kappa light chain from 25 to 50. Doctor said we need to nip this in the bud, put me on this Darzalex for a month with Pomalyst. I stopoed the Pomalyst because I also have COPD and I was having breathing problems. So I and now just using Darzalex every other week. My 12th infusion M-spike, it went down from 0.88 to 0.50 to 0.28 to 0.25. Latest is today's result, was 0.22. Thank Lord no side effects. Hope it continues and I get back to 0 M-spike.
I see doctor on November 8 so I'll see if he goes back to using Pomalyst or another drug with Darzalex.
I hope this answers any questions. Let's hope 2017 brings a cure for myeloma and all cancers.
Thank you, Joe
Re: Darzalex (daratumumab) not working - what next?
Hi Ron,
I was hoping you could explain to me more about this statement:
Please tell me more. I have a hard time understanding all this Ron.
Thank you, Joe.
I was hoping you could explain to me more about this statement:
An M-spike of 0.25 g/dL (2.5 g/l) is still very low. It must have been some other markers that made your oncologist decide to use Darzalex. Generally, patients with M-spikes that low, ... would not even by undergoing treatment unless they had one of the CRAB features.
Please tell me more. I have a hard time understanding all this Ron.
Thank you, Joe.
Re: Darzalex (daratumumab) not working - what next?
I have had multiple myeloma for 13 years since I was 58. I had a stem cell transplant after 4 years, and I have been on Revlimid, and then Revlimid with Velcade and dexamethasone, for seven years since the transplant.
When my IgA went up to about 1,000 a year ago, I started on Kyprolis and dex, and got it down to about 600 IgA, 0.9 g/dl M-spike, and added Revlimid when my numbers started going up.
That got me about 6 months. Then I started Darzalex in May and was able to add Kyprolis for three weeks. This is not clinically approved, but I did not like the trial data for Darzalex as a single agent. My IgA dropped to 120 and M-spike to 0.2 g/dl.
Then I dropped the Kyprolis and four months later added Pomalyst when my numbers went up. Pomalyst didn't work at all, and my IgA has continued doubling each month. Currently at about 1700.
My UCSF doctor is recommending Venclexta (venetoclax) or Keytruda (pembrolizumab) or Treanda (bendamustine). From the trial data it appears multiple drugs are better than a single agent. But the new drugs all add the old drugs I am refractory to. It seems we are in uncharted territory.
Best to all,
Mark C.
When my IgA went up to about 1,000 a year ago, I started on Kyprolis and dex, and got it down to about 600 IgA, 0.9 g/dl M-spike, and added Revlimid when my numbers started going up.
That got me about 6 months. Then I started Darzalex in May and was able to add Kyprolis for three weeks. This is not clinically approved, but I did not like the trial data for Darzalex as a single agent. My IgA dropped to 120 and M-spike to 0.2 g/dl.
Then I dropped the Kyprolis and four months later added Pomalyst when my numbers went up. Pomalyst didn't work at all, and my IgA has continued doubling each month. Currently at about 1700.
My UCSF doctor is recommending Venclexta (venetoclax) or Keytruda (pembrolizumab) or Treanda (bendamustine). From the trial data it appears multiple drugs are better than a single agent. But the new drugs all add the old drugs I am refractory to. It seems we are in uncharted territory.
Best to all,
Mark C.
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Mark Charles
Re: Darzalex (daratumumab) not working - what next?
I have been taking my 88 year old Father to the oncologist for treatment for almost 6 years. He has no symptoms of any kind since he was diagnosed with multiple myeloma. However, he does get infections rather easily and has experienced joint pain from arthritis.
He has been on Revlimid, Kyprolis, Pomalyst, now Darzalex (with dexamethasone). He is taking Darzalex without Pomalyst because of some side effects, but now they want him to take Pomalyst with Darzalex together and see if that helps.
His IgA numbers have increased from 2800 mg/dL two weeks ago to 3500 mg/dL today.
My question is, based on my Dad's age, are there other options, since Darzalex was supposed to be a big breakthrough?
He is otherwise pretty healthy.
He has been on Revlimid, Kyprolis, Pomalyst, now Darzalex (with dexamethasone). He is taking Darzalex without Pomalyst because of some side effects, but now they want him to take Pomalyst with Darzalex together and see if that helps.
His IgA numbers have increased from 2800 mg/dL two weeks ago to 3500 mg/dL today.
My question is, based on my Dad's age, are there other options, since Darzalex was supposed to be a big breakthrough?
He is otherwise pretty healthy.
Re: Darzalex (daratumumab) not working - what next?
Hi vvicin1,
What side effects did he experience with Pomalyst? Did he have the same problems with Revlimid, which could potentially be substituted for Pomalyst?
Darzalex really is a breakthrough drug and it has been shown to be effective as a single agent in some patients. However, a couple of clinical trials have shown that Darzalex' response rate goes up dramatically with the inclusion of an IMiD such as Revlimid or Pomalyst, so that would be worth following through (assuming he can tolerate one of the IMiDs). If pairing with an IMiD isn't a good option due to side effects, Darazlex can also be used with proteasome inhibitors such as Velcade, Kyprolis or Ninlaro.
There are also various cocktail combinations available with Empliciti, which is another monoclonal antibody like Darzalex, but which uses a different method of attacking the myeloma cell. However, Empliciti must be combined with an IMiD (Revlimid or Polmalyst) and/or a proteasome inhibitor (Velcade, Kyprolis or Ninlaro) since it doesn't exhibit single-agent activity.
There are also Farydak-based cocktails, which is a completely different kind of drug than the aforementioned drugs. And then there are even more new families of drugs such as Venclexta (venetoclax, ABT-199) that may be accessed off-label or via clinical trials. Your doctor should know which drug cocktail and what kind of doses would be appropriate for an elderly patient.
What side effects did he experience with Pomalyst? Did he have the same problems with Revlimid, which could potentially be substituted for Pomalyst?
Darzalex really is a breakthrough drug and it has been shown to be effective as a single agent in some patients. However, a couple of clinical trials have shown that Darzalex' response rate goes up dramatically with the inclusion of an IMiD such as Revlimid or Pomalyst, so that would be worth following through (assuming he can tolerate one of the IMiDs). If pairing with an IMiD isn't a good option due to side effects, Darazlex can also be used with proteasome inhibitors such as Velcade, Kyprolis or Ninlaro.
There are also various cocktail combinations available with Empliciti, which is another monoclonal antibody like Darzalex, but which uses a different method of attacking the myeloma cell. However, Empliciti must be combined with an IMiD (Revlimid or Polmalyst) and/or a proteasome inhibitor (Velcade, Kyprolis or Ninlaro) since it doesn't exhibit single-agent activity.
There are also Farydak-based cocktails, which is a completely different kind of drug than the aforementioned drugs. And then there are even more new families of drugs such as Venclexta (venetoclax, ABT-199) that may be accessed off-label or via clinical trials. Your doctor should know which drug cocktail and what kind of doses would be appropriate for an elderly patient.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Darzalex (daratumumab) not working - what next?
Hello all,
My boyfriend, who is 39, was diagnosed with multiple myeloma in 2011. He received a bone marrow transplant that year, which left him in remission for 4 years. This summer, he had a full body PET scan done and there were multiple lesions found on his body. He was being treated with Revlimid and Kyprolis, until pneumonia set him back a bit. Until that point, the tumors appeared to be shrinking. Because of that setback, his doctors then set him up with Revlimid, Ninlaro, and a Zometa-Darzalex infusion.
He has just finished the first cycle of chemo, but his doctors are now saying that he should stop treatments because of the aggressiveness of his disease. They say the lesions are not going away and more may have popped up, but isn't it too soon to determine?
We are looking for any help / advice that anyone may have with alternative treatments. Supplements, drug trials, etc. Like most of us on here, he has so much more fight in him, and to hear the doctors suggest he stop his treatments is extremely discouraging.
I appreciate any help! Keep the faith and remain hopeful out there.
My boyfriend, who is 39, was diagnosed with multiple myeloma in 2011. He received a bone marrow transplant that year, which left him in remission for 4 years. This summer, he had a full body PET scan done and there were multiple lesions found on his body. He was being treated with Revlimid and Kyprolis, until pneumonia set him back a bit. Until that point, the tumors appeared to be shrinking. Because of that setback, his doctors then set him up with Revlimid, Ninlaro, and a Zometa-Darzalex infusion.
He has just finished the first cycle of chemo, but his doctors are now saying that he should stop treatments because of the aggressiveness of his disease. They say the lesions are not going away and more may have popped up, but isn't it too soon to determine?
We are looking for any help / advice that anyone may have with alternative treatments. Supplements, drug trials, etc. Like most of us on here, he has so much more fight in him, and to hear the doctors suggest he stop his treatments is extremely discouraging.
I appreciate any help! Keep the faith and remain hopeful out there.
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Kat_23 - Name: Kathryn
- Who do you know with myeloma?: Boyfriend
- When were you/they diagnosed?: 2011
- Age at diagnosis: 34
Re: Darzalex (daratumumab) not working - what next?
Thank you Multibilly for your response. Sorry it took so long. My Dad has not experienced any side effects whatsoever. It is amazing how he can take all these drugs and suffer no side effects.
I think his doctor agrees with you. She thinks that the combination of drugs should help reduce his lgA numbers.
I think his doctor agrees with you. She thinks that the combination of drugs should help reduce his lgA numbers.
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