Back at Cedars

This was in my welcome kit.   What am I supposed to do with it?

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.

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.

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. 

Solctice Update

Happy Summer Solstice.  Nominally the longest day of the year.  But it should be no surprise that for me, the longest day was May 2nd when I went to the ER to learn of my new diagnosis.

To be honest, I’m getting sick of being sick.  I’m actually having a good day today.  I bottomed out a couple of days ago when my immunity levels fell and I could barely stand up.  That was rectified Tuesday when I received a blood transfusion and went from weak to chipper in the space of about 7 hours.  That’s a long time to sit around and be infused, but the fates provided me with a Dodger/Cubs double header to keep me amused during the process.  Today, I’m still feeling strong and able to do most things without undue effort.

But even on my best day, I have to say I don’t feel right.  Today, for example, even though I feel relatively strong, I can only handle walking about 4 blocks before I need to rest.  I’m not much help to Susan around the house, although on good days, I’m able to prepare dinner, run some laundry and tidy up a bit.  I’m still encouraged that I’ll get through this.  But I wish the path to healing were straight up, rather than two steps forward and one step back.  Just being honest.  This is tough.

So, here’s where things stand.  I’m on a break between chemo session and just emerging from the worst of it.  I should be feeling good for about a week or so.  I’ve been going for biweekly blood tests and was able to shift locations from Cedars (19 miles, 1 ½ hour drive) to Redondo Beach (45 miles, 20 min drive).  But my primary care is still at Cedars and I’ll be going there on Monday for a bone marrow biopsy which will tell us where we are in terms of treatment and help direct us to where we go next.  If all goes as expected, the results will show that the cancer is responding to the treatment and the plan to proceed with finding a stem cell donor will commence.  I’m told it takes about 3 months for the donor selection to take place and in the meanwhile, I’ll continue to receive rounds of chemo about every 3 weeks.

So, even though this post is less sunny than some, please know I haven’t lost sight of how fortunate I am overall with all the care and support I’ve received.  So many of you have reached out, sent lovely sentiments, items of cheer, visits and offered to do whatever you can to help. 

Actually, there is something each of you could do to support me should you feel up to it.

To date, I’ve received at least 3 bags of donated blood.  I will undoubtedly need more soon.  They work wonders. I have tremendous gratitude to the anonymous people out there who donated the blood I received. The need for blood is always there.  And if you would honor me with a blood donation, I would be extremely grateful.  It’s easy to do, of course. Just contact your local Red Cross.  

Thanks and stay tuned.