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.

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.

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 3^rd 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 4^th 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.