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Let’s hear from our readers!

Home/Inspirational, News, Transplants/Let’s hear from our readers!

Let’s hear from our readers!

Today I would like to pass-along a reader question, along with an update from John Knighten out in Seattle, who was preparing for this week’s first of two back-to-back stem cell transplants.  Let’s start with Sara from North Carolina.  Sara has a question about Revlimid and possible liver damage:

Hi Pat,

Just wondering if you’ve ever had high liver values, specifically transaminase, AST and ALT, while taking Revlimid. I was on 25 mg for almost a year and have been on 10mg for over a year now and these values are very high…

Imagine my surprise when I came home and looked at the package insert for Revlimid. It listed hepatotoxicity, specifically transaminase abnormalities. The package insert says to discontinue the drug until values come down and try to start again, but I’m not one of those people that can take a drug holiday.   I went off Revlimid for 3 weeks when I had back surgery in September and the numbers shot up a lot. M spike went over 3.0 for the first time ever. I’ve never heard of anyone in our support group report this problem while on Revlimid, and just wondered if you’ve ever experienced this?

I emailed Sara that no, I wasn’t familiar with this potentially serious side effect, that I’ve never paid attention to my liver numbers–adding that I hoped my doctors have!

Have any of you ever experienced elevated liver numbers while using Revlimid?  After using it myself for the better part of six years, nothing would surprise me.

Next, here’s an update from our old friend, Patient Snapshot star John Knighten.  I have been sharing John’s remarkable story ever since I met him early last fall in Spokane, Washington.  Here are links to those featured posts:

Patient Snapshot: 44 year old John Knighten

Patient Snapshot: 44 year old John Knighten (Part Two)

Patient Snapshot Update: Our friend John

Another Patient Snapshot Update about John in Spokane

Hard-core tips for PN sufferers and inspirational update 

John emailed me about how he was doing earlier this week, along with a few new pictures:

Hi Pat,

It’s been a little bit since my last update, mainly because there has not been too much to report.  We finished up the majority of the routine testing last week, but Dr. Holmberg was concerned about a sample of spinal fluid that came back with some abnormal cells.  We were sent to a Neuro Oncologist to look over my labs.  He saw no reason for chemo direct into the CSF and would clear me for transplant.

John in hospital Tomorrow I am due to receive the dose of melphalan to get the party started for the auto transplant.  I’ll get Monday off then receive my stem cells on Tuesday the 19th which happens to be my 45th birthday.  Let’s hope Seattle has kept good care of my stem cells in their freezer for the past 2 ½ years!   If things go well, the donor allogeneic should be 4-6 weeks away.  I sailed through my first auto and hope to be outpatient throughout again.  We are still waiting to see which of my brothers will be the donor.

John brighter days aheadIt hasn’t been all work and testing for us since we arrived in Seattle.   After a couple weeks at the SCCA house (motel style), we got word of a vacancy at the Pete Gross House, patient housing owned by the Fred Hutchinson research center.  We stayed here last time and the extra privacy and room were nice.  Now we have room for the girls to visit and when family members come to relieve Shawna as caregiver they’ll have their own room.

John and ChrisJohn and Chris with wivesWe’ve had a chance to get out and visit with friends in the area, even my old school buddy and room mate Chris Tumblin.  We grew up together from grade school and he was my first roommate after high school before I joined the Marine Corps.  We have not had a chance to get together for 20 years and finally got together for dinner last week.  He lives on Whidbey Island in the Puget Sound, just a short ferry ride away.  He claims he knows all the great fishing and crabbing spots in the Sound so I’m looking forward to sneaking out for some fishing during my time out here.  So far Shawna has shot down my attempts to buy a bigger boat, but at least she’s willing to let me bring my boat over from Spokane.  It will be nice to have my refuge on the water close by.  Hope you are doing well.  Take care, John.

John, I’m sure all of my readers join me and Pattie in wishing you a complication-free transplant!  Or should I say, “transplants,” since you will be following-up the first auto (using your own cells) stem cell transplant with an allo (donor cells) transplant later on.  All the best, good friend!

Feel good and keep smiling!  Pat