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Starting Kyprolis, Revlimid, and dexamethasone treatment

by maycrest on Mon Aug 22, 2016 10:15 am

Hello All,

Well, the Big Day is finally here. I was diagnosed on July 7, 2016, and my first treatment session is scheduled for later this morning. I will be treated with Kyprolis, Revlimid, and dexamethasone. I'm scared, but ready.

maycrest
Name: Joni May
Who do you know with myeloma?: Self
When were you/they diagnosed?: 6/28/2016
Age at diagnosis: 61

Re: Starting Kyprolis, Revlimid, and dexamethasone treatment

by rick on Mon Aug 22, 2016 7:37 pm

Hi Joni,

Welcome to the forum.

My husband was diagnosed in November 2015 and had 4 cycles of Kyprolis, Revlimid, and dexamethasone (KRD), then an autologous stem cell transplant (ASCT) on June 3rd, and the plan is for 4 cycles of consolidation starting in early September.

We have a doctor's appointment tomorrow to review the plan.

My other half responded very well to this combination, He was minimal residual disease (MRD) negative both before the transplant and on his bone marrow biopsy done around day 60 after the transplant earlier this month.

He has had relatively routine and oft reported issues with the treatment regimen: dexa­meth­a­sone insomnia and energy, episodic fasciculations (muscle twitches) and neuropathy with the Kyprolis, and Revlimid GI issues and a brief rash at the end of the first cycle. But he walked 4+ miles daily throughout the treatment (more since the transplant), and his spirits are / were generally good. He eats very well, gets a nap during treatment days, and stretches and practices mindfulness and guided imagery. More strenuous exercise was on hold due to boney vertebral disease, but we expect he can resume that soon after his medical team okays it. Our friends consider his urban hiking pretty strenuous, however, with 1000+ foot vertical climbs the norm here in hilly San Francisco.

The first cycle was the hardest mentally, but each subsequent was easier and the stem cell transplant was so much easier than we expected. For him the mental stress and all the unknowns were harder than ANY of the physical issues that have followed.

We've adapted to avoiding infection risks and triple washing produce. We eat out less but host more dinner parties. For now our entertainment is more at home and less adventure based. For us the hardest thing was limiting exposure and rescheduling friends when a virus goes through a school or office by asking everyone if they were healthy or exposed.

He's doing great.

I expect so will you.

Wish you only the best.

rick

rick
Name: rick
Who do you know with myeloma?: husband
When were you/they diagnosed?: nov 2015
Age at diagnosis: 50

Re: Starting Kyprolis, Revlimid, and dexamethasone treatment

by JPC on Mon Aug 22, 2016 10:21 pm

Hello Joni:

I am sorry you have to be here, but welcome to the forum. I will just briefly add that, as rick has mentioned, the first one or two rounds are the most challenging, then the myeloma goes down, and you get used to the side effects. Godspeed, and I hope the best for you. Regards,

JPC
Name: JPC

Re: Starting Kyprolis, Revlimid, and dexamethasone treatment

by petecool on Tue Aug 23, 2016 9:05 am

I am on the same regimen as well now after my original regimen, which included Velcade.

This stuff seems to work much better, though I will warn you that Revlimid can have side effects. I got a rash, but my dosage was just reduced and I am doing better.

My kappa light chains were off the charts (in the thousands) when I was first diagnosed, but on this regimen as of 2 weeks ago, they were down to 160. Now only if my kidneys can recover ...

Good luck to you and keep your chin up.

petecool
Name: Peter Coolbaugh
Who do you know with myeloma?: Me
When were you/they diagnosed?: May 2016
Age at diagnosis: 41

Re: Starting Kyprolis, Revlimid, and dexamethasone treatment

by Jonah on Tue Aug 23, 2016 2:29 pm

Hi Maycrest,

Welcome to the forum. I'm sorry you have to be here, but you'll find lots of helpful and knowl­edge­able support.

I hope your first Kyprolis infusion went well. Please make sure that your doctors are monitor­ing your heart and liver health during the first cycle or two of your Kyprolis, Revlimid, and dex treat­ment regimen. The regimen is definitely one of the more effective treatments for multiple myeloma, but Kyprolis can cause heart- and liver-related side effects, some of which can be very serious. So your doctors want to be on the lookout for signs such side effects may be occurring.

Best of luck with the treatment, and keep us posted on how it goes!

Jonah

Re: Starting Kyprolis, Revlimid, and dexamethasone treatment

by maycrest on Thu Aug 25, 2016 7:01 pm

Thank you for the kind words and helpful suggestions. So far, so good. :)

maycrest
Name: Joni May
Who do you know with myeloma?: Self
When were you/they diagnosed?: 6/28/2016
Age at diagnosis: 61


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