Thursday, October 18, 2018

Mile 14

Fall Colors in the Eastern Sierras

Preparing to return to Cedars today for Arm B of Round 4 of Hyper CVAD.  For those of you keeping score at home, this means I’ll have 4 more hospital admissions after this one.  If all goes according to schedule, my last day at Cedars will be December 30.  So, I should be able to celebrate the New Year in style!  Susan came up with the analogy that we’re on about mile 14 of a 26-mile marathon.  Still a long way to go and we have to suck it up.  But we’re still on our feet and covering ground and keeping the finish line in site.
Results from the most recent bone marrow biopsy remain encouraging.  This is my 3rd straight negative Minimum Residual Disease result.  This means that even with the most sensitive instruments, there are no detectable cancer cells in my marrow.  Which indicates that the treatment is working.  It doesn’t necessarily mean I’m cured and it doesn’t change the plan to continue getting treated.  But it’s a good result. 

I feel great today, as I always do on the day I have to go back for admission.  I’ll probably feel pretty crappy again as I absorb the chemo cocktail that is waiting for me. On this round, I’ll be receiving cytarabine and methotrexate.   They are both pretty gnarly chemos, but I usually get through the course in about 5 days…so I should be back home late Monday or early Tuesday.  It does seem like the cumulative effect of all this treatment is making me weaker, but not on a grand scale.  On my worst days, I get a little queasiness and have very low energy.  I get a bit dizzy when I’m standing, but never to the point of passing out.  This is more pronounced during the middle of the day for some reason.  All to be expected as my bone marrow is getting hammered pretty hard by all this stuff.

Susan and I escaped for a few days for a drive to the Eastern Sierras to chase some Fall color.  We stayed in Bishop, saw some lovely yellow and amber leaves, breathed in some crisp fresh air and found some great places to eat…both roadhouses and fancy dining.  I handled the altitude (up to 9000 ft)  just fine.  I’m not strong enough to do any hiking, but I was able to walk around a bit and certainly enjoyed seeing the sights while driving.   It was nice to get away!

Tuesday, September 25, 2018

Gearing up for Round 4

Welcome back, fight fans.  We’re about to initiate Round 4 of a scheduled 6 rounder between the skinny kid from Wisconsin and the Big Bad Hyper C-VAD monster.  It’s been a tough fight so far.  I’ve absorbed numerous body blows.  I’ve even been knocked to the canvas a couple of times, including Saturday night when low immunity levels combined with a fever of 102.4 led to an unscheduled visit to the ER where we learned that I had contracted a urinary tract infection…which was treated with antibiotics and I was mercifully sent back to my corner (sent home!). But I’m back on my feet and ready to fight again.  I’ll be checking into Cedars on Thursday for +/- a week for this round.  Also heading up there today for another bone marrow biopsy to hopefully confirm that I’m still in remissions…which would mean I’m currently ahead on points and on track for winning the fight. So, stay tuned.  There is plenty of action left in the upcoming rounds…and as Howard Cosell always said “this kid can take treeeMENNNNdous punishment.”

Special shout out to Vicki, Bridgette and Kaye for having fought off some crazy afflictions.  Kaye is back on stage in Austin leading the Kaye Pasa Trio.  Bridgette is galivanting in Europe.  And Vicki was seen celebrating with friends at Big Chill 2018.  You are all tough as nails and living miracles.  So happy for all of you!

Wednesday, September 5, 2018


Throwback photo.  From last year.

Since I have a lot of time on my hands these days, I get to contemplate pretty useless things.  For example, the word “downhill”.   It is one of those words that can mean one thing in certain contexts and the exact opposite in others.

“Going downhill” can mean deteriorating as in “he’s going downhill”.  But to a bike rider, “going downhill” means things have gotten easier.  You’ve pedaled hard and made it to the top of the hill and now you get the reward of a downhill.

So, I’m using the bike rider context to point out that I’ve reached the halfway point of my treatment and it should be all downhill from here.  This whole thing started 4 months ago and as of Sept 1, I have 4 months to go.  The forecast is that I will complete the Hyper CVAD treatment on December 30.  So, by this reckoning, I’m on the downhill side of the treatment.  It’s still a long road, but at least the end is closer than the beginning. 

I’ll be checking back into Cedars tomorrow.  For those of you keeping score at home, I’ll be getting Part B of round 3.  I expect I’ll be there until Monday or Tuesday, which means I’ll be celebrating Rosh Hashanah (Jewish New Years) in the hospital.  There WILL be a service at the hospital chapel and if my immunity levels allow, I’ll be able to attend.  If not, I can watch it on the TV set in my room.  This could be a test of my piety somewhat equivalent to Job.  If I can stick it out for the whole service without switching to SportsCenter, I’m truly a pious man.

Shana Tovah to all. 

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.

Friday, July 27, 2018

We may have a donor!

Shabbat Shalom
(Cedars provides a Shabbat box for patients on request.   It contains two battery operated candles, a challah and a box of grape juice.   Everything I need to ring in the sabbath!)

Good news. We may have a donor!

We received a response from a prospect in New York.  He’s a 9/10 match and I’m told that the mismatch is not an important one.   So, next step is to get a blood sample and confirm the match. Meanwhile, the registry has identified a match in Israel who would be a 10/10 match.   But he hasn’t responded yet as to his willingness to be a donor. I understand it is preferable to have a couple of potential donors to choose from, so they want to give it a couple of weeks before deciding on the first guy.   But if all goes well, we could be scheduling the transplant for late September/early October. Stay tuned.

Meanwhile, I’m back at Cedars for part B of round 2 of HyoerCVAD chemo.   For those of you keeping score, I’m getting methotrexate and cyteribine this time around.  I’ll be here til Monday or Tuesday, barring any complications. (Demi Lovato is also here somewhere.  Haven’t seen her). I’ll be back in a few weeks for round 3, but if all goes smoothly with the donor, that will be the last of the chemo.  

In other news, results from my latest bone marrow biopsy are the same as the last one.   No detectable cancer cells and my status is MRD negative, which means I’m in remission….which is where I need to be before the transplant.   So, everything seems to be on track.