John’s Story

Site created on October 9, 2016

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by John E johnson

John and I want to wish everyone a Happy New Year and do an update on where John is at on his journey with multiple myeloma.  In November of 2021 we found out that John had relapsed from his Car T clinical trial.  At that time I had done research and had read so many good things about a new chemo treatment called Carvytki and  I was pushing to get John into that program.  It had been FDA approved in February of 2021 but is  definitely in great demand and is showing a very high success rate for partial remission for up to 18 months.  Unfortunately there is still not a cure for multiple myeloma but research has made leaps and bounds since John was diagnosed in September of 2016.


 In 2022 he was put on three clinical trials that were unsuccessful and his numbers went up and down through out the year.  The last clinical trial he was on was a chemo regiment called Blenrep.   Blenrep was very affective in fighting his multiple myeloma but also had severe side effects of low platelets (down to 3) and also temporary eye damage.  After three treatments John's vision had definitely been affected by this treatment and  was discontinued. Since then we have found out that Blenrep clinical trial has been discontinued completely due to severe side affects.   John's platelets and blood counts took a severe hit and he had trouble recovering from that. 

Since the Stem Cell Boost John has been feeling great and is able to spend hours upon hours out in his workshop getting it set up the way he wants and also working on projects.

Dr Dkalb, at Froedtert Hospital in Milwaukee, decided to use John's stem cells that had been collected in 2017 (enough stem cells were collected to be able to do two stem cell transplant) and administered them as a stem cell boost.  That stem cell boost has really worked and John has felt so good and has regained a lot of strength and has been keeping himself busy in his workshop this fall and winter.

 We then found out in the beginning of December 2022 that John was going to be able to receive the Carvytki treatment.  On December 5th we were back at Froedtert and John had a procedure to place a tunneled cuffed venous catheter in  his right upper chest side.  This catheter will remain in indefinitely or at least until the T cells are reintroduced into his system.  On December 6th John's T Cells were extracted and sent to a lab, out west, and they will be genetically engineered, by introducing a protein, the specific chimeric antigen receptor (CAR), which makes them Car T cells.  The number of genetically engineered T cells are expanded by growing additional cells in the lab.  Once there are enough CAR T cells, they will be delivered back to Froedtert and administered to John to launch a precise attack against the cancer cells. 

Our schedule for this will be to go to Froedtert on January 20th for a full day of testing.  The test will include a bone marrow biopsy, Pet Scan, Pulmonary Function Test, labs, echocardiogram/EKG and a visit to the Day Hospital.   As long as they don't find any issues we will then return home and go back to Froedtert January 26th. 

The  modified T cells are scheduled to be returned to Froedtert by January 23rd.  If everything goes as planned, we will travel to Froedtert on January 26th for a conference with Dr Dkalb, sign consent forms, and do blood work.  On the 27th & 28th John will be administered Bendamustine.  Bendamustine is an anti-cancer chemotherapy drug that is used prior to  the T Cells infusions.  John will have the 29th off and then on the 30th he will be given the Car T infusion as an outpatient at the Day Hospital.  Once the cells are infused, we will be going to the Day Hospital for at least 10 days post infusion.  As long as everything goes well and John doesn't have any severe side effects or reactions this will be all done as an outpatient.  We will need to be within 30 miles of Froedtert Hospital until at least February 28th and will be staying at Kathy's House (which is such a blessing).

John and I want to wish everyone a Happy New Year and pray that 2023 brings peace to our world, love and happiness to everyone, along with good health.  Over the last 6 to 8 weeks John has really felt good and our whole family was able to get together for Christmas and really had a wonderful holiday.   We are truly blessed to have a wonderful family and so many great friends!

 

Patients and caregivers love hearing from you; add a comment to show your support.
Help John Stay Connected to Family and Friends

A $25 donation to CaringBridge powers a site like John's for two weeks. Will you make a gift to help ensure that this site stays online for them and for you?

Comments Hide comments

Show Your Support

See the Ways to Help page to get even more involved.

SVG_Icons_Back_To_Top
Top