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.

Wednesday, July 18, 2018

Registry "oops" and treatment update

First of all, apologies to all who tried to register for the bone marrow registry – only to find that the cut off for being a donor is under age 60.   I didn’t know that when I posted it.  I do appreciate your willingness to check it out, though.  If I may be so bold….if you have offspring or friends that might be the right age and willing to check it out, please pass on the link.

Mercifully, I’m home for the next couple of weeks.  I spent 8 days at Cedars getting chemo and definitely experienced some major hospital fatigue during that time. It was a rough stint.  Among other things I developed a very uncomfortable skin rash, my heart rate dropped at one point to 35 BPM causing all kinds of concern which proved to be unnecessary, my feet swelled up several times to where walking was uncomfortable.  I was connected to an IV pole most of the time and had to drag it with me whenever I went to the bathroom, shower or for a walk around the unit.  I had two lumbar punctures (where they infuse chemo into your spinal fluid, which is where cancer apparently likes to hide – it doesn’t hurt).  On one day, I was infused with each of the following:

·         Cytoxan (chemo)
·         Methotrexate (chemo)
·         Mensa (infusion to protect my kidneys from damage due to chemo)
·         Dexamethasone (steroid)
·         Insulin (to lower glucose highs caused by the steroid)
·         Adavant  (anti-nausea)
·         Lovenox (blood thinner)
·         Heparin (anti-coagulant)
·         Rocephin (anti-biotic)
·         Vimcristine (chemo)

And of course, there is typical hospital routine of being woken every 4 hours for vitals, blood draws, pills, etc.  Not to mention having to wear those awful hospital gowns and eating crappy hospital food when you don’t have much of an appetite to begin with.

Wah wah wah. 

So, I’m home now and feeling OK.  Somewhat weakened by all the treatment, but overall comfortable and happy to be here.

As mentioned, Ill be back to the hospital later this month…hopefully for just 2-3 days.  Meanwhile, the search continues for a transplant donor.  I’ve been advised that 3 individuals have been identified as 9/10 matches and there is one 10/10 match out there.  We are waiting to hear back from them.  

Fingers crossed.

Thursday, July 5, 2018

The Sh*t is Working!

(Sunset over Manhattan Beach Pier - 7/3/2018)

Results from last week’s bone marrow biopsy are encouraging.  In technical terms, it found negative minimum residual disease (MRD).  That means the test could find no leukemia cells floating around…. even with very sensitive state of the art measurement instruments.  This is clearly good news, it means that my disease is responding to treatment, which is huge.  But it doesn’t mean I’m cured or that treatment can stop.  In fact, I’m heading back Cedars today for 5 days or so of round 2 of Hyper CVAD chemo…. which is the same chemo cocktail I’ve been getting.

Despite this very positive result, the treatment path remains a bit murky.  Path one is to continue receiving chemo for about 6 months.  This is considered the low risk/low reward option.  Odds of achieving a cure are about 20%.  And there is no way of knowing if I’m cured.  Just have to live my life and hope that I don’t relapse.  Path 2 is to move forward with a transplant from a donor.  This is considered the high risk/high reward option.  If all goes well, it will result in a cure.  However, there is also the possibility that it won’t work and I will relapse and separately the possibility that I will contract Graft vs. Host disease, an auto immune response which is essentially my body rejecting the foreign cells. It could affect my quality of life.  The impact could be as minor as some dry eye discomfort or as major as a lupus like response that I would have to live with.  There is also a 3rd path…. a clinical trial involving weaponized T-cells from a donor that have been programmed to destroy my specific cancer cells.  It is very experimental. 

The plan is to get consults from my medical team and make a decision.  Don’t need to make a decision right away.  Meanwhile, the search is on for a suitable donor in the event we do chose the transplant option.  It usually takes about 3 months to complete this process. 

So, lots to think about.  Meanwhile, I’m feeling pretty good today.  Had a lovely 4th of July BBQ at home.  Got to admit, I’m a bit down about having to go back to the hospital today, but its only for few days so I’ll tough it out.

One other quick note….I contracted an infection last week and it was pretty hairy.  I happened to be at Cedars for the bone marrow biopsy.  But I spiked a 105 fever right after the procedure.  I honestly don’t remember anything that happened that day…I was out cold.  But Susan was there and I was a mess.  I was admitted to the hospital and spent two days of hell there fighting the infection. I was alternatively shivering convulsively and sweating profusely.   In the end, it turns out that the PICC line inserted in my arm had gotten infected and caused the infection.  They removed the PICC line, administered antibiotics and by the end of day two, my fever broke and I was fine and I went home on day 3.

Thanks again to all who have called, messaged, texted, visited and otherwise lent support.  It means so much and I appreciate it more than can be expressed. 

A final note.  My doctor said he is very encouraged by the Bone Marrow Biopsy result and is optimistic.  And so am I.