Hi MrPotatohead,
I too want to wish you the very best with this new treatment. Thank you for taking the time to share your experience with everyone. You are in my thoughts and prayers.
Rhonda
Forums
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Rhonda - Who do you know with myeloma?: myself
- When were you/they diagnosed?: September 2014
- Age at diagnosis: 54
Re: Darzalex and Kyprolis Treatment
Thank you very much, Rhonda.
Your kind words and support mean a lot.
Your kind words and support mean a lot.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Darzalex and Kyprolis Treatment
Hi MrP,
I am following your posts closely because I suspect I will be starting Darzalex shortly. I've been through radiation treatments and 3 years of chemotherapy after a plasmacytoma fractured my femur and I was diagnosed with multiple myeloma and amyloidosis (kappa light chain).
Disease is now climbing in numbers and bone lesions are returning (seen on PET/CT scan). I was told to quit my treatment for two weeks until I meet with doc next week to hear about next line of treatment.
Past treatment regimens:
- Cyclophosphamide, Velcade, and dexamethasone (CyBorD)
- Revlimid, Velcade, and dexamethasone (RVD)
- Autologous stem cell transplant
- Pomalyst and dexamethasone, then
- Revlimid, Ninlaro, and dexamethasone.
My doctor has said in the past that Krypolis is not a choice for me, but that Darzalex likely is. Since that is next in the pipeline, I believe that is where I am headed.
Like you, I am worn out and tired of this journey; I feel beat up and discouraged. But tomorrow I'll find the strength, courage, hope, faith and pull up my bootstraps and soldier onward to the next treatment.
Overall, how are you feeling so far since Darzalex – your energy level, sleep, mood, pain? Worse, same, improve?
I am following your posts closely because I suspect I will be starting Darzalex shortly. I've been through radiation treatments and 3 years of chemotherapy after a plasmacytoma fractured my femur and I was diagnosed with multiple myeloma and amyloidosis (kappa light chain).
Disease is now climbing in numbers and bone lesions are returning (seen on PET/CT scan). I was told to quit my treatment for two weeks until I meet with doc next week to hear about next line of treatment.
Past treatment regimens:
- Cyclophosphamide, Velcade, and dexamethasone (CyBorD)
- Revlimid, Velcade, and dexamethasone (RVD)
- Autologous stem cell transplant
- Pomalyst and dexamethasone, then
- Revlimid, Ninlaro, and dexamethasone.
My doctor has said in the past that Krypolis is not a choice for me, but that Darzalex likely is. Since that is next in the pipeline, I believe that is where I am headed.
Like you, I am worn out and tired of this journey; I feel beat up and discouraged. But tomorrow I'll find the strength, courage, hope, faith and pull up my bootstraps and soldier onward to the next treatment.
Overall, how are you feeling so far since Darzalex – your energy level, sleep, mood, pain? Worse, same, improve?
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Darzalex and Kyprolis Treatment
Hi Melpen,
Wow, you have been through a lot of treatments for someone who first got sick just a few years ago.
I wonder if you share my problem -- my myeloma responds to treatment, but the response is typically not very long lasting.
The good news for me concerning Darzalex, is that I have not had many side effects, at least so far (have been on it for about three weeks).
No effect on mood, sleep, pain level.
If you do give it a shot, I wish you the best. This one-drug-after-another treadmill does get tiresome!!
Wow, you have been through a lot of treatments for someone who first got sick just a few years ago.
I wonder if you share my problem -- my myeloma responds to treatment, but the response is typically not very long lasting.
The good news for me concerning Darzalex, is that I have not had many side effects, at least so far (have been on it for about three weeks).
No effect on mood, sleep, pain level.
If you do give it a shot, I wish you the best. This one-drug-after-another treadmill does get tiresome!!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Darzalex and Kyprolis Treatment
Yes, I am the same way. I respond to treatment, but it is short lived.
Another thing noticed in my journey is that I can't tolerate high-dose treatment, perhaps due to my small frame and to my autologous stem cell transplant and other past treatments that have compromised my marrow.
It gets worrisome when options appear to be running out.
I'm glad to hear that Darzalex has not had horrible side effect to your sleep, pain and energy
Thanks for paving the way and posting your Darzalex experience. I'll be reading with interest and praying this IS the treatment that controls your myeloma. God Bless.
Another thing noticed in my journey is that I can't tolerate high-dose treatment, perhaps due to my small frame and to my autologous stem cell transplant and other past treatments that have compromised my marrow.
It gets worrisome when options appear to be running out.
I'm glad to hear that Darzalex has not had horrible side effect to your sleep, pain and energy
Thanks for paving the way and posting your Darzalex experience. I'll be reading with interest and praying this IS the treatment that controls your myeloma. God Bless.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
Re: Darzalex and Kyprolis Treatment
Hi Mr. Potatohead,
Great to hear that you are not experiencing any bad side effects from the current treatment. Hopefully it will be effective and reduce the pain you have been experiencing.
Mark
Great to hear that you are not experiencing any bad side effects from the current treatment. Hopefully it will be effective and reduce the pain you have been experiencing.
Mark
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Mark11
Re: Darzalex and Kyprolis Treatment
Hi,
I hope you and all the patients who have multiple myeloma will recover as soon as possible.
My dad was diagnosed with multiple myeloma in the summer of 2015. Since the beginning of the disease process his doctors tried several treatments. But unfortunately none of them make my dad better.
Please don't forget that every patient is different. Don't lose your hopes, as we never lose. Now, we also use Darzalex and Kyprolis together as treatment for my father. İ will keep checking your thread and also share information on how my father is reacting to the treatment.
I hope you will have great news to report. Take care of yourself.
I hope you and all the patients who have multiple myeloma will recover as soon as possible.
My dad was diagnosed with multiple myeloma in the summer of 2015. Since the beginning of the disease process his doctors tried several treatments. But unfortunately none of them make my dad better.
Please don't forget that every patient is different. Don't lose your hopes, as we never lose. Now, we also use Darzalex and Kyprolis together as treatment for my father. İ will keep checking your thread and also share information on how my father is reacting to the treatment.
I hope you will have great news to report. Take care of yourself.
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helentas - Name: Gunes Tas
- Who do you know with myeloma?: My dad
- When were you/they diagnosed?: August, 2015
- Age at diagnosis: 51
Re: Darzalex and Kyprolis Treatment
Thank you, Melpen.
Can you share what the effectiveness of you stem cell treatment was? I haven't had one yet, but I have heard that if you have short-lived responses to drug treatment, the same is likely to be true with a transplant. Has that been your experience?
Thanks, Mark11, for your positive thoughts.
Thank you, Helentas. I am looking forward to comparing notes with how your father does on this treatment. Best of luck to you both.
Can you share what the effectiveness of you stem cell treatment was? I haven't had one yet, but I have heard that if you have short-lived responses to drug treatment, the same is likely to be true with a transplant. Has that been your experience?
Thanks, Mark11, for your positive thoughts.
Thank you, Helentas. I am looking forward to comparing notes with how your father does on this treatment. Best of luck to you both.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Darzalex and Kyprolis Treatment
I wish you nothing but positive outcomes.
My husband just finished spending 39 days in the hospital because of fever and they could not find the source. He was diagnosed in 2014. Was on melphalan, thalidomide, and prednisone for about a year. Stopped for 6 months and then relapsed. Then on Velcade and dex for almost a year, then relapsed. Then on Revlimid 25 mg for a month, then on 10 mg for 2 cycles less 2 pills. So it is not working so now they are looking to put him on Darzalex asap.
He is having transfusions tomorrow. All bloods are all so so low. I hope he can get on this Darzalex program and I hope that it can help him. After this, there is nothing more for him but clinical trials (here in Montreal).
My husband just finished spending 39 days in the hospital because of fever and they could not find the source. He was diagnosed in 2014. Was on melphalan, thalidomide, and prednisone for about a year. Stopped for 6 months and then relapsed. Then on Velcade and dex for almost a year, then relapsed. Then on Revlimid 25 mg for a month, then on 10 mg for 2 cycles less 2 pills. So it is not working so now they are looking to put him on Darzalex asap.
He is having transfusions tomorrow. All bloods are all so so low. I hope he can get on this Darzalex program and I hope that it can help him. After this, there is nothing more for him but clinical trials (here in Montreal).
Re: Darzalex and Kyprolis Treatment
Hi beebycarolann,
I am very sorry to hear about the rough time your husband is having.
In 2015, I was in the hospital for two weeks with what looked like double pneumonia, but despite multiple biopsies and cultures, the pathogen was never identified. A similar story to your husband's.
I want to wish him the best of luck with Darzalex. But I also want to say that if that doesn't do the trick, there are other therapies he can try besides clinical trials, if he hasn't already. For example, Kyprolis (carfilzomib), Pomalyst (pomalidomide), Ninlaro (ixazomib), Empliciti (elotuzumab). These are some of the newer drugs, and I hope they are available to you in Canada.
There are also older chemotherapy agents like bendamustine and cyclophosphamide, which in conjunction with steroids, can be very effective. I may try these if other options don't work out for me.
All the best to you and your husband.
I am very sorry to hear about the rough time your husband is having.
In 2015, I was in the hospital for two weeks with what looked like double pneumonia, but despite multiple biopsies and cultures, the pathogen was never identified. A similar story to your husband's.
I want to wish him the best of luck with Darzalex. But I also want to say that if that doesn't do the trick, there are other therapies he can try besides clinical trials, if he hasn't already. For example, Kyprolis (carfilzomib), Pomalyst (pomalidomide), Ninlaro (ixazomib), Empliciti (elotuzumab). These are some of the newer drugs, and I hope they are available to you in Canada.
There are also older chemotherapy agents like bendamustine and cyclophosphamide, which in conjunction with steroids, can be very effective. I may try these if other options don't work out for me.
All the best to you and your husband.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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