A Farsee

    The extra time to recover between the last cycle and whatever is next has been wonderful.  This break from chemo has allowed time for his immune system to recover and for the antibiotics to help with his infection.   With a stronger immune system, we've taken the opportunity to see people we love and haven't seen in quite some time.   Chris got to meet his grand-nephew and niece for the first time, time with children and their laughter and snuggles was great for both of us.   As well, my aunts helped me arrange to surprise my Mom (and Dad) for Mother's Day.   I also was able to attend a work event which I otherwise would not have attended .   It's been a busy couple weeks.   

      The time off has been very nice, but we also were very anxious to know what is coming next.  We met with Dr Sborov and his MA, Mary, last week and can see further into the distance than we have pretty much all year.  We've been living just a few days or a couple weeks at most.  

     I am a planner.  I love being able to be prepared for tough things with ways to make them easier, or to have fun things to look forward to that help counterbalance all the tough things.   With the unpredictability of cancer I often question what is better.   Is it better to plan things to look forward to and risk having to cancel them?   Or is it better to not plan things to avoid being disappointed?   In reality it's likely mixture of both.   

      We talked with Mary for quite a bit about a few options.   There were more options than we expected, but we both felt prompted that the right decision was ...

Carfilzomib / Kyprolis

Xpovio / Selinexor
Dexamethasone / Decadron

     Carlfizomib is one of the medications from the KDCEP that he has had for the past 2 cycles.   It is an infusion that will be weekly for the next 3-4 month.   Each cycle will be 3 weeks on and then 1 week off but with labs every week to make sure everything is alright.

    Since it seems no cancer treatment is complete without it, he will take dex.   They will also be adding several other medications to try and prevent or manage the side effects.   

      After the first cycle he will start Xpovio.  It is a pill that he will take at home following the same schedule as Carlfizomib.  It is a fairly new drug, in a class of medication (Called SINE).   I didn't understand much of my high school biology and this is much deeper than that.  Perhaps as a bit of a sign of how far we've come, when Chris met with the neuro ophthalmologist in the fall of 2017 (before his myeloma diagnosis) I remember my brain distinctly turning off as they mentioned lots of "scary words".    This time as they were trying to explain to us that it is a different type of drug and started to mention scary words like nuclear and blood brain barrier instead of my brain turning off completely it simply stuttered and then moved on.   It would take a lot for them to explaining to us how it works, and knowing how it works isn't important to me as much as that it should.    They say a picture is worth a thousand words, so here's a picture.   Our choice is to simply realize that there are brilliant people making huge strides in cancer treatment.  

    This time Mary did a great job of preparing us with a better knowledge of what to possibly expect.  Instead of going a bit blind like we did for the last chemo this time we can see almost a whole season ahead.   She prepped us for the side effects and how often we will likely need to be at the hospital for treatment.  They will follow his myeloma labs results very carefully to make sure it appears to be working and then after three cycles we will do another PET.  They do anticipate much of the same side effects (GI Issues, Fatigue, etc) but will send us home with medications to hopefully prevent what they can.   It's likely not going to be the easiest summer, but it should be less intense than the year so far.   

      As well, they are optimistic that this will keep his myeloma in a stable or possibly improving place.   It will give us a chance to prepare physically, mentally and emotionally for the next step.  In a surprise turn of events, for the first time since that I can recall, the next step of a possible stem cell transplant, actually feels OK.   But that's a "farsee" too far, for now we'll just be grateful to have an idea of what to expect for the next couple months.

    What is this "farsee" you ask?   On Chris's mission it was a measure of distance.  Where you are standing, look into the distance, and as far as you can see, is a farsee.  People would say "Go two farsee's and turn left at the Magnolia tree, then another farsee and turn right."   It's very fitting for cancer.   Sometimes it is having the strength to make it to the next moment or hour, sometimes it's having the endurance to make it another day, sometimes it's the ability to see a month or two into the future.   It's about doing what you can, when you can, however you can, for as long as you can.    

KDCEP Cycle 2

    About a month ago I wrote a blog which you may have missed called "The Calm".   There wasn't much to share, just that we were waiting, so I didn't post it to Facebook.  Since then Chris was able to get the PET scan (the second this year) we needed.   It showed that the first cycle of KDCEP had worked.   One mass had shrunk from 48x35 mm to approx. 8x18 mm.   A huge improvement!     As well the SUV (a measurment of how active) went from a 5.3 and down to 3.    The numerous masses in his lower abdomen had  "improved significantly" but there were small residual ones remaining.   

     So, we ended March by starting another round of KDCEP.    It again was a 4 day continuous infusion of chemo.   However this time we were able to complete it at home.   While daily trips to the main Huntsman were needed to change the chemo bag out for a new one, being able to sleep and simply be at home was a huge blessing.    They slightly increased the dose.   They also anticipated his blood numbers to drop to the point where he needed treatment, so we made regular trips for testing but, just like the first cycle, no platelets or blood was needed.

     One the 22nd, he had yet another PET scan.   We were both optimistic that this one would show that there were no lesions left, but there is still a persistent one.   It now measures 2.2x.8 and SUV of 2.6.  Chris had also said he would be willing to try a bone marrow biopsy again.   It was scheduled for the same day, but when the machine broke down before we arrived and they had to cancel our appointment. Chris took it as a sign and decided not to do it.   

     We met with Dr Sborov again last week.   He has suggested strongly that he wants to do a bone marrow transplant.  We both have reservations and aren't 100% that this is what we feel is the right thing to do.   It comes with significant risks.   He did also mention clinical trials as a possibility.   The two cycles of KDCEP came with tough side effects, but he was very pleased with how Chris was able to tolerate it without major complications and that the masses have shrunk so significantly.  

      We are so very grateful that it worked as well as it did.   But it did come at a cost.   His neuropathy (constant burning, numbing, stabbing and tingling pain) is much worse and now spreads nearly to his knees.   In addition it also affects two fingers on each hand.   It's very painful and has made many things a challenge, especially sleeping.  As well, he's battling an infection that required treatment and antibiotics.   He's slowly recovering from the fatigue that also deepens as the cycle goes on.   It's pretty safe to say that we're both drained mentally, emotionally and physically.  So when Dr Sborov's plan was to allow some time for Chris to recover it didn't take persuasion on our part.    Although we had a small break in January, myeloma has kept us quite occupied since this fall so we are very ready for it.  I was searching for a good quote and think I found our prescription...Play, Laughter and Joy.   

Any ideas on where to get it filled?