Thursday, August 16, 2018

Wednesday, August 8, 2018

Plan B

So, it doesn’t appear that a suitable donor will be identified.  In a previous post, I mentioned that a 9/10 match had been identified.  However, the mismatched protein was a very significant one and to move forward with that donor could result in my body rejecting elements of the transplant and creating some significant quality of life issues.   The 10/10 candidate could not be located.  So, barring a miracle, it looks like we’ll be moving on to Plan B.

Plan B is a continuation of the Hyper CVAD chemo regimen I’ve been following.  I’ve completed two rounds of it so far and the results have been favorable.  I’m MRD negative…meaning that biopsies cannot detect any chemo cells. However, this does not mean that it won’t come back.  So additional rounds of chemo would be necessary.  Specifically, the recommendation is that I have 4 more rounds for a total of 6 rounds.  This would mean that I’ll be in and out of Cedars from now until about the end of the year.  The hope is that I’ll remain MRD negative throughout this period and well beyond.  Potentially, the chemo could cure the cancer.  Problem is, we have no way of knowing.  If it doesn’t come back…I’m cured.  But if it does, then alternative therapies would be introduced.  The first would be an immunotherapy -where specific drugs and taken to induce an immune response -my body fights the cancer instead of the chemo.  The second would be CAR-T therapy – a novel approach you’ve probably seen on shows like 60 Minutes where your own T-Cells are removed, weaponized with specific proteins that are programmed to search and destroy specific cancer cells without harming other cells, and reintroduced.  This is very experimental and, in fact, is currently only approved for patients under age 25.  But that will change eventually, so the strategy could be to kick the can down the road long enough for the rules to change and allow CAR-T for older patients.
According to my MD, there are studies showing that patients my age do about as well with ongoing Hyper CVAD as they do with donor transplants.  That is largely because both are less aggressive than they would be for much younger patients.  As it is, my chemo is reduced by about 25% to accommodate for my age.
There is a significant advantage to going the continued chemo route.  No potential for my body cells to reject the donor body cells…a condition knows and graft vs host disease (GVHD).  This is what I was referring to earlier.  There is no way to prevent this from happening.  It is mitigated considerably by finding a perfect donor match.  But the potential is always there no matter how good the match.  And the symptoms can range from minor things like constant dry eye or skin rashes to major things such as Lupus-like conditions, kidney or lung issues or other things where I’d be unable to get out of bed.  Needless to say, the potential for this would cause anyone great concern.  And since it appears that my chances for a cure are about the same without taking on this risk, I’m actually rather relieved that we are shifting over to Plan B.

The downside of Plan B is that I’ll be getting a shit ton of treatment.  But, if it works, I’ll eventually be back to normal.  Cured, in fact. It means being admitted to Cedars every 3 weeks from now until the end of the year, followed by 6 months or so of outpatient treatment and then periodic follow up.  And that is if it works. 

Needless to say, this disease is a very difficult one to live with and treat.  But I feel comforted that I know what I’m getting in to and don’t have to worry about the ravages of GVHD.  So I’m moving forward with some optimism.  The most positive prognosticator is that I went MRD negative pretty fast and that I still am.  The scary part is that I will never know if I’m cured and whether or not I’ll relapse.  No way to tell.  But the longer I can keep going, the more potential there is for novel treatments if I do relapse.

So, that’s where things stand at the moment.  Next hospitalization for the beginning of Round 3 will be next Thursday Aug 16. Until then, I’m home and gaining strength from the last chemo.  I am receiving Neupogen shots to help with my immunity and blood transfusions when necessary (had one yesterday). 

A lot to digest here.  Feel free to comment or hit me up with questions.

Saturday, August 4, 2018

Just Beachy

Not much to report on this lovely summer day.  I’m enjoying being home between chemo sessions.  Next session will start in about two weeks. 

On Wednesday night, I was invited to see Mission Impossible.  The movie was fun (if you see it, let me know if you agree that old Tom looks kind of funny when he is running after the bad guys) but it was even better just to be out with some friends on a balmy Southern California evening.  I’ve made a personal pact to do more “getting out”.  Today, I went down to the beach to attend the local surf festival.  The heat and all the walking around was a bit taxing, but I’m still glad I did it.

August 1 marked 3 months since I was diagnosed.  That’s 3 months of shuttling back and forth between hospital and home and being loaded up with the poison that will save my life.   This will probably not go down as the best year I’ve experienced.  But next year could be.

Hope you are enjoying your summer.