Dear Rhonda, Multibilly, K_Shash
Thanks so much for the kind words and encouragement. The big issue for me now is indeed the durability of my response.
Your positive words mean a lot.
Multibilly,
"Cool beans". I'll have to remember that expression!
Forums
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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
Thanks for the update Mr. Potatohead.
So, other than fatigue, there is little in the way of side effects from Kyprolis (carfilzomib)?
So, other than fatigue, there is little in the way of side effects from Kyprolis (carfilzomib)?
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: Darzalex and Kyprolis Treatment
Hi Little Monkey,
There are actually quite a few potential side effects of Kyprolis, some of them quite serious. But all that I have experienced are anemia and fatigue (which are probably related). I recently noticed an increase in the fatigue, which I attribute to the addition of Darzalex.
Since one set of possible side effects of Kyprolis adversely impact cardiac function and I have heart disease, I get a checkup with my cardiologist every three months consisting of an echocardiagram. So far, I have had no heart related issues, fortunately.
There are actually quite a few potential side effects of Kyprolis, some of them quite serious. But all that I have experienced are anemia and fatigue (which are probably related). I recently noticed an increase in the fatigue, which I attribute to the addition of Darzalex.
Since one set of possible side effects of Kyprolis adversely impact cardiac function and I have heart disease, I get a checkup with my cardiologist every three months consisting of an echocardiagram. So far, I have had no heart related issues, fortunately.
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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
Mr. Potatohead,
Good to hear about the test results. More importantly, has the response helped alleviate your pain?
Mark
Good to hear about the test results. More importantly, has the response helped alleviate your pain?
Mark
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Mark11
Re: Darzalex and Kyprolis Treatment
Hi Mr. PH,
I just saw your results. This is very encouraging! Hope this positive trend keeps up. It gives us all hope, too, so thank you very much for sharing!
I just saw your results. This is very encouraging! Hope this positive trend keeps up. It gives us all hope, too, so thank you very much for sharing!
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Alizabeth - Name: Alizabeth
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 61
Re: Darzalex and Kyprolis Treatment
Hi Alizabeth,
Thank you very much. I am very hopeful and will keep posting results to this thread. Perhaps 2017 will bring good news for me and your husband.
And I wish the same for everyone fighting multiple myeloma.
Thank you very much. I am very hopeful and will keep posting results to this thread. Perhaps 2017 will bring good news for me and your husband.
And I wish the same for everyone fighting multiple myeloma.
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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 just finished the second infusion of Darzalex yesterday and I am home today. I did not get any reaction with the first or second infusion and all systems are go for getting it every Wednesday.
The Benadryl (diphenhydramine) given made me so groggy I spent most of the 10 hour infusion day dosing on and off. I also get methylprednisolone and a shot of Velcade subcutaneously along with Darzalex. I take the methylprednisolone for two days after the infusion and that gives me a boost but when it leaves my system, I am deflated and crashed come Sunday / Monday.
Hopefully this new treatment will bring the myeloma under control and stop the progression of the new lytic lesions in my skull.
I pray your treatment works for you and will continue to follow your posts. Stay strong and carry on!
Melissa
I just finished the second infusion of Darzalex yesterday and I am home today. I did not get any reaction with the first or second infusion and all systems are go for getting it every Wednesday.
The Benadryl (diphenhydramine) given made me so groggy I spent most of the 10 hour infusion day dosing on and off. I also get methylprednisolone and a shot of Velcade subcutaneously along with Darzalex. I take the methylprednisolone for two days after the infusion and that gives me a boost but when it leaves my system, I am deflated and crashed come Sunday / Monday.
Hopefully this new treatment will bring the myeloma under control and stop the progression of the new lytic lesions in my skull.
I pray your treatment works for you and will continue to follow your posts. Stay strong and carry on!
Melissa
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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 Melissa,
It's great that you did not experience any infusion reactions so far. I've read that if you have no infusion reactions by the third Darzalex infusion, you are unlikely to develop reactions during subsequent infusions.
For my first three infusions, I took steroids after the infusion as well as before. But now it's just methyprednisolone before.
I've also read that your treatment --- Velcade and Darzalex --- is very effecfive, and that subcutaneous Velcade is less likely to induce peripheral neuropathy than is Velcade administered through an IV.
I hope you have great results with your treatment, and I will say a prayer for you, too. Thank you for your very kind thoughts.
It's great that you did not experience any infusion reactions so far. I've read that if you have no infusion reactions by the third Darzalex infusion, you are unlikely to develop reactions during subsequent infusions.
For my first three infusions, I took steroids after the infusion as well as before. But now it's just methyprednisolone before.
I've also read that your treatment --- Velcade and Darzalex --- is very effecfive, and that subcutaneous Velcade is less likely to induce peripheral neuropathy than is Velcade administered through an IV.
I hope you have great results with your treatment, and I will say a prayer for you, too. Thank you for your very kind thoughts.
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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 Mr P,
I just stopped my Darzalex with Pomalyst. I'm just going with Darzalex alone. I also had trouble with Pomalyst, so I'm giving my body a rest and next month the doctor will add something.
Happy holidays,
mr joe
I just stopped my Darzalex with Pomalyst. I'm just going with Darzalex alone. I also had trouble with Pomalyst, so I'm giving my body a rest and next month the doctor will add something.
Happy holidays,
mr joe
Re: Darzalex and Kyprolis Treatment
Good luck, Joe, on whatever your new treatment turns out to be.
Enjoy the holidays, as well.
Enjoy the holidays, as well.
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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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