CCd hot new therapy for relapsed patients

Reality check: 21st Century Oncology just called confirming my next Kyprolis infusion on Monday.  Cytoxan, Kyprolis and dex, OH MY!

Updates about old friends Tom and David, news about the latest experimental myeloma therapies and a glimpse into a new, cutting edge allogeneic stem cell transplant clinical trial; last night I realized I hadn’t written in any detail about how I’m doing for several weeks.

Pat's beach head shotI like it that way!  I’d much rather focus on news that affect the myeloma community, rather than my discomfort or the impossible choices I face over the next few months.  I hinted about what’s going on in a couple of posts:

Kyprolis/Cytoxan/dex knocks me out on infusion days


Could new blockbuster myeloma therapy be right for me?


Here’s an excerpt from a short post I wrote a week ago when I wasn’t feeling well:

…After completing my second infusion late this afternoon,  I staggered home, fell into bed and slept over two hours.

Everything in my body was stiff–even my eyelids.  I’m feeling a bit better now.  Just hung-over.  Piece of cake when compared to recovering from a stem cell transplant!  But still no fun.

Yesterday’s Cytoxan probably didn’t help.  Nor did the IV Benadryl.  Not sure if anti-nausea drug they used makes me sore or sleepy, too.  Probably.

CCd.  That’s the acronym Dr. Chanan-Khan gives Cytoxan, Kyprolis (carfilzomib) and dexamethasone.  One thing all of the specialists I consulted agree on:  this should work.  But for how long?  Its what comes next where everyone disagrees as I try to stay one step ahead of my cancer…

My second infusion was Thursday afternoon.  I felt bad or out-of-sorts–on and off–well into the weekend.  Stiff muscles and a jumpy, significantly upset stomach topped the “side effect top ten” list.  While Pattie was getting ready for work early Friday morning, I lamented to Pattie, “This is no fun!  Reminds me of good, old fashioned chemotherapy.”  Nothing “good ” about it!  I was referencing reactions people I know (including Pattie’s ovarian cancer therapy a decade ago) when chemotherapy made her miserable for three or four days following every infusion day.

I ended with, “If I’m going to feel this bad, I might as well get a transplant!”  I must have felt really bad to be out of my mind and say something like that.  It’s the nausea.  Hate it!  Despite taking double doses of magnesium omeprazole.  Guess Cytoxan and double dose of dex too much for my GI tract to handle.

Seriously, forget what I wrote last week:

Everything in my body was stiff–even my eyelids.  I’m feeling a bit better now.  Just hung-over.  Piece of cake when compared to recovering from a stem cell transplant!  But still no fun.

I understand that a significant minority of patients experience inconvenient and hard to manage side effects after taking myeloma therapy mainstays like Revlimid, Velcade and Doxil.  And most every myeloma patient can share miserable “demon dex” horror stories.  But all in all, the side effects for most of us are manageable.

Toxic chemotherapies used to treat most solid tumor cancers tend to be more caustic, resulting in unhealthy drops in weight, hair loss, diarrhea and/or vomiting.   Pattie experienced all this–and more–following each of her six knock out chemo infusions last decade.  But at least it worked–she’s been cancer free ever since.

I’m hopeful and optimistic, but there’s no guarantee that CCd will help knock my myeloma back.  I won’t know until I undergo a PET scan in late May.

When I first started using pomalidomide, PET results after four months confirmed it was working.  And I could tell even before undergoing my scan.  A year ago my M-spike still held some weight (it was dropping rapidly) and my hip and rib pain was dramatically subsiding.

Even though POM’s effectiveness had obviously started to wain after almost a year, dropping POM and replacing it with Cytoxan, Kyprolis and dex, was the first time I ever had a doctor stop a therapy while it was still helping.  Why not just add Kyprolis and/or Cytoxan to POM/dex?

Dr. Tricot wanted to run a short test launch to see if the new therapy worked, using the knowledge to adjust things after my likely transplant in Iowa City this summer.  During our short consult at this year’s Myeloma Beach Party, myeloma specialist Dr. Noopur Raje wanted to see me on a proteasome inhibitor.  I emailed her the news and she was very pleased.

So was Mayo Clinic Jacksonville’s head of Hematology, Dr. Asher Chanan-Khan, who I’m seeing now moving forward.  Consesus among three dispirit myeloma experts?  Stop the presses!

My cynical guess: with so many agreeing the therapy change was a good idea, with my luck it won’t work very well!

I shouldn’t kid about this stuff–it had better work!  If it doesn’t, I could lose the option of joining Dr. Koehne’s modified T cell allogeneic transplant trial in New York.  That’s a topic for another post.  Which do I choose: transplant from column A or column B?

How’s my bone pain now?  My tingly spidey sense tells me the therapy may indeed be working, although I am experiencing enough pain from the lesions in my left hip and femur that it does spasm from time.

I have a theory about why I had so much trouble handling the therapy switch last week.  500 mg oral Cytoxan could be doing a number on my stomach lining.  So could 80 mg dex (40 mg first day, 40 mg second day) so close together.  The stiff muscles?  Blame that on the Kyprolis?  I know I blame Kyprolis for the shortness of breath and racing heart rate I’ve experienced on-and-off since Thursday.

But I have a plan!  Give a myeloma patient oral options and let the tinkering begin!  Although I will take my 500 mg Cytoxan Monday afternoon along with my first Kyprolis infusion, I’m not going to take my dex until before bedtime.  Doing that has always worked best for me.  Then I’m going to delay taking the second 40 mg dex until next week.  Call the non-compliant patient police!

Dr. Luke suggested I take 40 mg dex on my off week–Dr. Tricot felt it would be better for my banged-up bone marrow if I went one week on, one week off–to help with bone pain.  Yes, I could have used my dex “crutch” this week; it’s amazing what that stuff masks!  Mega dex doses one week and none the next is screwing up my ability to read my body and predict how well a current therapy is working!  Still, I chose to give my body a break (as prescribed by Dr. Tricot) and go dex free this week.

I’m hoping tweaking things helps my next cycle be more tolerable: 40 mg dex Monday PM, then the following Monday, spreading it out a bit.

I’ll let you know how its working–and revisit which way I’m leaning on the transplant front–next week.  Until then I’m feeling pretty good; should be a great weekend.

By the way, I just hear from Tom’s wife, Whitney.  She emailed me details about his latest health scare.  I’ll pass that news along tomorrow.

Feel good and keep smiling!  Pat

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