Thursday, July 11, 2019

Day 50

Madison and "Papa" - May 2019

I’ve reached day 50 of the 100 day post transplant mark.  I’m told that the I should start feeling closer to my old self after day 100.  There is also less likelihood of complication after day 100.  So I’m ½ way there.

I had a very encouraging doctor’s appointment yesterday.  First of all, all of my immune system numbers are in the normal range.  That’s extremely encouraging.  It means that the donated immune system is growing in my body nicely.  It doesn’t mean I’m as bullet proof as you are.  I still have a baby immune system.  But I don’t need to be as concerned about bacterial infections as I was up to now.  I still need to be very concerned about contracting something viral….a cold, the flu, measles (yikes) etc.  So I still can’t go to crowded venues that I typically do in the summer.  Dodger Stadium is off limits.  Same with Hollywood Bowl.  Pageant of the Masters. Or a Jeffrey Epstein accuser reunion.  But I can go out to dinner or to a movie theater…but use caution.  If someone is coughing or sneezing, I need to relocate.  I was also greenlighted to visit with my granddaughter so long as she doesn’t have a cold.  And…of course… she just came down with a cold, so I’ll have to wait a bit for that one.

I was also given the green light to suspend having 24/7 babysitting.  I’m able to drive.  Hospital visits are now 1 day/week instead of 2.  All things I’ve been looking forward to.  My doctor told me I should not be doing much in the way of household chores, like washing dishes or taking out the garbage (not really, but don’t tell Susan!)

I’m definitely starting to feel stronger.  I walked 1.5 miles yesterday without stopping to rest. 
It very much feels like I’m getting a jail release.  It’s been hard to be so limited.  And it was kind of weird to always have someone around. I enjoyed having friends around, but it was very uncomfortable on the days when I had a home health aide on duty whose primary job was to watch me while I was watching TV.  Poor thing must have been bored out of her mind.

Pleased to share this good report.  I expect I’ll get progressively stronger as the next few weeks unfold.  Still no way to know if we’ve successfully chased the cancer away…. although current indications are positive.  Next step on that will be a bone marrow biopsy around Day 100. 


Thursday, July 4, 2019

Day 42



I’m at day 42 post-transplant.  I’m making very good progress.  Results wise – the numbers are very very encouraging.  The donor cells are engrafting and I’m growing back an immune system.  I’m no longer neutropenic (which is when my immune system is so compromised that I have almost no defense against infection).  I’m not experiencing any signs of rejection of the donor cells.  In other words, it looks like we may have succeeded in overcoming the cancer…although it is too early to declare victory.  The first 100 days are the critical period, but here at day 42, things are very much on track and days when things are most likely to go wrong are behind me. 

I was hospitalized for almost exactly a month.  It was quite an ordeal.  During the time, I received a lot of chemo.  I received a full body dose of radiation.  I got the donor cells.  I had daily infusions of anti-rejection meds, antibiotics, electrolytes, and other things.  I didn’t have much of an appetite, but I managed to choke down enough nutrition to keep myself healthy.  There were a few days when I didn’t leave my bed…but mostly I was able to walk the floor I was on.  I wasn’t permitted to go any further since my immunity levels were so low.  I’d be lying to you if I didn’t tell you it was hard.  I was pretty miserable, despite the fact that I got terrific care from the medical staff and the nursing staff and tremendous support from friends and family.  Every day when the doctor came through on rounds, I would ask him if I could go home today.  And finally, after 30 days, I got the affirmative.

It was great to get home.  But I was REALLY weak once I got here.  For about the first two weeks, everything I did was an effort.  It’s hard to describe.  I wasn’t like sleepy tired.  And it wasn’t like the fatigue of having worked out too hard.  It just felt like getting out of my chair required preparation.  Even just to walk to the kitchen for a drink of water.  But it’s been a few weeks since then and as I write today – the 4th of July – I’m feeling much stronger.  I’m have more energy.  I’m able to walk about ½ mile without much fatigue.  I’m eating and sleeping normally.  And little by little I’m starting to feel like myself again.  I’d say that day 42 out of 100 is a pretty accurate gauge…I’m about 42% of feeling back to normal.

I’m still somewhat limited in that I don’t have a completely bullet proof immune system, so I can’t be in places where there are a lot of people yet.  I can’t go to a crowded movie theater.  I can’t be around my grandchild, since 2 year-olds are little germ factories.  But overall, I’m feeling good about things.  Just a bit impatient about how quickly I’d like to be back to normal. 

Happy 4th of July!


Monday, May 20, 2019

Bulletin

My transplant day was moved up to tomorrow (Tuesday).   I’m not 100% sure I can explain why, but it has something to do with the fact that the donor product is a little smaller than anticipated and also with the fact that they want to remove plasma to reduce any potential for trouble due to different blood types (I’m AB+ , Donor is O+).   And I’m told that the fresher the better, so since it’s here and I’m ready, no sense putting it off an extra day. So the entire schedule is being advanced by one day.

I’m feeling fine right now, despite having received a butt load of chemo over the past four days.  I’m as ready as I’ll ever be. Current projection is that I’ll feel pretty crappy starting Friday. Fever and chills as my body recognizes the intruding cells as an infection and tries to fight them off.   Next week, I’ll have no immune system, so I’ll be warding off visitors for a few days just to be on the safe side.

Stay tuned!

Wednesday, May 15, 2019

The Transplant

(A little drum workout to accompany this post)

It’s now been a year since I was diagnosed with B-cell acute lymphoblastic leukemia.  It’s been a very long year that included 12 rounds of heavy chemo, pneumonia, a cardiac arrest, a life-threatening sepsis infection, hospitalizations for neutropenic fevers, multiple blood and platelet transfusions, and way too much hospital food.  Through it all, I was blessed with the support from a network of friends and family and first-rate medical care...for which I am eternally grateful.  In many ways, I feel fortunate.

Now it is time to climb the next mountain.  I will be admitted to Cedars on Thursday May 16 to begin the process of receiving a stem cell transplant.  What follows is what I intend to be a realistic and dispassionate overview of what’s ahead for me.  I try to keep things I post here skewing to the positive.  And while I think the path is still encouraging, it is a bit rocky.  So, this is a warning about the unvarnished nature of what follows.

Here’s how it will go…..
  • On Thursday, I’ll receive some very nasty chemo that will wipe out my immune system.  The greatest level of discomfort at the outset is the possibility of mouth sores…often quite painful…that are mitigated by sucking on ice chips. 
  • For the next several days, I’ll receive some additional chemo.
  • I’ve been advised that on Monday, May 20, the donated cells will arrive. 
  • On Tuesday, May 21, I’ll undergo an hour or so of full body radiation..which is primarily intended to prepare my body to receive the foreign cells.  I’m told this is usually pretty benign. 
  • On Wednesday, May 22, the donor’s cells will be transfused into me.  This is the actual transplant, although the procedure itself is rather anti-climactic.  Nothing more than bag of cells connected to my PICC line for about an hour.



For the following several days, I’ll receive various drugs that attempt to mitigate rejection of the foreign cells.  The nasty effects of the chemo typically kick in about 7 – 10 days after I receive the nasty chemo…meaning I’ll feel pretty crappy during the week between Memorial Day and the end of May.  I’ll be weak and possibly nauseous.  I’ll have zero immunity until the donor cells engraft…which they slowly begin to do over the ensuing weeks. 

I’m told to plan on about a 3-4 week hospital stay.  Followed by about 100 days of rest at home where I’ll be slowly recovering. 

Clearly all of this involves risk.  Specifically:

  • It may not work.  The odds are decidedly with me, but if it doesn’t work, I’ll need to consider several “salvage” therapies that are newer and not necessarily proven.
  • There is a risk of some rejection of the foreign cells. I’m told the medication provided post transfusion does a good job of mitigating these risks.   There are two levels of risk
    • Chronic symptoms, such as dry eyes or skin rashes.  About ½ of transplant patients experience these symptoms.  They can be minor to not so minor.
    • More acute symptoms, such as contracting an auto immune disease such as lupus or severe arthritis or some organ failure.  These are less likely, but are certainly a risk. 
  • There is some risk that I’ll get an infection while I have no immune system which could be life threatening.


That’s the Steven King version, though.   I’m moving forward with confidence but I’d be lying if I didn’t admit to being somewhat anxious.  I worry about how rotten I’m going to feel for the next several weeks.  I do NOT look forward to spending 3-4 weeks in a hospital room.  Of course, I have concern about how well the procedure will work.  I’m concerned about the rejection effects.  And, of course, I’m worried about coming out of this OK. 

I’m not sure how much energy I’ll have over the next several weeks to post updates.  But I’ll update you as I’m able. 

I do think I’ll be OK.  Maybe a little banged up, but generally OK.  Keeping my fingers crossed…and even a few toes for this one.


Friday, April 19, 2019

Treatment Holiday!

Sunset at Key West

Enjoying a two week respite between immunotherapy sessions.  I’m presently treatment free! We took advantage of this gift by stealing off to Florida for a few days in Key West, followed by a few more days celebrating the Passover holiday with relatives in Boca Raton.  I’ve been able to bike and swim and kayak and enjoy the Florida sunshine unencumbered by chemo or tubes or any meds. My hair is even growing back! And there is good news on top of that….my latest bone marrow biopsy results put me back into remission.  Specifically I’m once again negative minimum residual disease (MRD-), meaning that the immunotherapy is working and no active cancer cells are detectable. This is decidedly good news as it bodes well for the success of the imminent transplant. But, alas, it’s not a cure.   The plan remains in force. I’ll be reconnected to the fanny pack for another month of immunotherapy starting on Tuesday, followed by the transplant sometime in early June. Once that starts, I’ll be pretty sick for awhile as I’ll be getting heavy chemo and radiation to wipe put my cancer and replace my immune system with bone marrow stem cells from the donor.  But for now, I’m feeling great and despite the resumption of the immunotherapy, should continue feeling good until the transplant. The immunotherapy has been pretty easy to take and dealing with the fanny pack is not too intrusive. So I’ve got another month or so to live it up.

Hope you are enjoying your Passover/Easter holiday!

Saturday, March 23, 2019

Fantastic Voyage



The 1966 film Fantastic Voyage involved injecting a miniaturized submarine with miniaturized scientists into the body of a scientist to hunt down and destroy an otherwise fatal disease in his body.  Essentially, that’s what’s happening inside me right now.

Instead of Raquel Welch in a form fitting cat suit, I have a compound that is weaponizing my own T-Cells into hunting down and destroying leukemia cells.  The process is called Immunotherapy.  It differs from standard chemotherapy in that it is not an outside agent that unselectively kills cells that look like cancer, but rather a way of stimulating my own immune system to identify and kill the cells. 

My last biopsy revealed that I still have some leukemia cells, despite 9 months of intense chemo.  I’m sure you’re aware that fighting bacteria with antibiotics can lead to “super bacteria” that is resistant to antibiotics.  This is similar to what I’ve experienced.  The cancer cells that survived the chemo are apparently resistant to it, meaning that another tool is necessary. So, I’m currently being infused with Blinatumomab (trade name: Blyncyto), which is in a class of immunotherapy drugs called BiTEs (which stands for bi specific T-Cell engagers).  It is bi specific in that it does 2 things.  It identifies and puts a receptor antibody on the cancer cells and puts what amounts to a seek and destroy molecule on my T-Cells that will enable these immune cells to locate and explode the cancer cells.  Kind of like having that miniature submarine from Fantastic Voyage inside of me.

The Blyncyto is fed through a pump attached to my PICC line and infuses me 24/7 with the medicine.  I’m into my second week of this and side effects have been very minimal…apart from having to lug around a fanny pack that contains the pump and the medicine.  I’ll be continuing this protocol until mid-April when I’ll get unhooked for two weeks and then reconnected for another 28 days.  After that, I’ll be undergoing a stem cell transplant from a donor.

The 10/10 match donor I mentioned in my last post disappeared from the registry.  No reason was (or ever is) given.  That leaves us with a 9/10 donor who seems to be willing to move forward.  I know nothing about this donor other than that he is in the US.  I’m continuing to search for a 10/10 donor, although my doctor seems comfortable with moving forward with the 9/10, since the missing protein is not a real important one in terms of success or rejection.  So, if things go to form, next steps are to have the donor tested for things like HIV, hepatitis, and other things what would be problematic.  Similarly, I’ll be evaluated on a “co-morbidity index” to make sure I’m up to the transplant procedure.  If all goes well, I’ll begin the procedure in early June.  It will involve wiping out my own immune system with heavy duty chemo and replacing it with the donor’s bone marrow stem cells.  I’ll have a new immune system that is cancer free and, if all goes well, cured of BOTH leukemia and multiple myeloma.

Note: even though my myeloma has been in remission for many years now, it is not cured. It could reappear, although the longer it stays quiet, the less chance there is of this happening.  The transplant is the only avenue for curing it completely.

There IS a bit of a silver lining to my recent relapse.  Although it was disappointing, having it happen now gives me the flexibility to do all this crazy stuff…wheras if it happened 5 years from now when I’m in my 70s, I might not clear the “co-morbidity index” and therefore would not be able to do the transplant.  Under that scenario, I would have just had to continue to tamp down the disease…essentially kicking the can down the road…until the next best treatment protocol is approved.

For now, I’m still on the lookout for a donor.  The ideal donor will probably be of Ashkenazi Jewish heritage. Individuals over age 60 will not be considered, as the cells I need DO deteriorate over time.  I’m told that the “fresh date” for these donor cells is between the ages of 18-44.  If you know anyone in the “sweet spot” and willing to donate, please pass along my individual link to the registry: http://join.bethematch.org/ForEd.  The donation kit is sent out at no charge for individuals between the ages of 18-44.  They will charge $100 for the kit to individuals between the ages of 45-60.

Right now, life is pretty calm.  Other than the constant companion of the fanny pack, I feel fine.  I’m very optimistic with how this will all turn out and consider myself fortunate to be able to take advantage of these new treatments and techniques.




Friday, March 1, 2019

1 in 10,000

Leukemia cells - the enemy

I had hoped that this blog update would be a celebration of the end of overnight hospital treatments.  Indeed, I completed my last round of Hyper CVAD treatment on Feb 4 and happily skipped out of Cedars Sinai expecting not to be admitted back for any admissions. However, I spiked a fever the following Friday and was readmitted for the weekend.  The fever was a not unexpected result of the amount of chemo my bone marrow has received. There was no associated infection.  It was just that my bone marrow had taken quite a beating with 12 chemo sessions over the past 9 months.  My immunity levels were near zero.  In fact, I had NO white blood cells for about a day.  But, as expected, I began to recover and was sent home on Monday with the expectation that I would just get progressively better.  And I have been.  Right now, I feel pretty normal.

Last week, I went in for a bone marrow biopsy, which is the test that shows whether or not any leukemia cells could be detected.  This is my 4th since my diagnosis last Spring and the other three results were MRD-, meaning no cancer cells could be detected.  I was expecting the same result with this one.  But…

The results showed that 1 in 10,000 cells did look suspiciously like a cancer cell.  That one cell can replicate quickly and result in full blown leukemia.  In other words, I’m not in remission…I’m in relapse.  So, continued treatment is necessary. 

Here is the plan:

More chemo won’t help.  I’ve already had a shit-ton.  So, starting March 11, I will be admitted to Cedars.  A PICC line will be reinserted (the one I had was removed last week) and it will be connected to a fanny pack sized pouch that contains a medication called Blinatumomab.  This is an immunotherapy medication that specifically targets the antibodies that were detected in the biopsy.  They will keep me in the hospital for 2-3 days to see how well I tolerate this medication…as the side effects can be very severe if my body doesn’t like it.  Assuming all goes well, I’ll go home and wear this “fanny pack” for 4 weeks while it continuously infuses me with the medication.  After four weeks, I’ll get another biopsy and if it there are not active cells, that will probably take care of this phase of the treatment.  If not, I’ll be connected for 4 more weeks.

I will also be headed for a transplant using cells from a donor.  Good news here is that a donor has surfaced and he is a perfect 10/10 match.  Assuming he can be contacted, is healthy and is willing to do it, I’ll be scheduled for a transplant in a few months.  If the transplant goes well, I’ll be cured of both the leukemia and the myeloma. 

This continued plan generates many concerns.   Such as:
  1. Finding the best transplant match.  If the 10/10 can’t do it, we would have to settle for a less good match…which increases the potential for me to experience some level of cell rejection…called graft versus host disease (GVHD).  This can be mild…such as a recurring skin rash or dry eyes…or severe…can’t get out of bed.  The better the match, the less likely I’ll experience anything significant. 
  2. The blinatumomab:  First of all, it is a very expensive medication.  $189,000/month.  It is labeled for use when cancer cells are 1 in 1,000.  Since my percentage is currently much lower, we will have an argument with insurance…although my doctor has done it before and feels confident we can get them to cover it.  Meanwhile, as indicated earlier, the medication can cause some very severe issues, although these will be apparent at the outset..which is why I’ll be under hospital observation for the first several days.  After that, there doesn’t seem to be much to worry about, expect that I’ll have this damn pouch connected to me 24/7 for a month.  The normal side effects are minimal.

What is the long-term prognosis? At this point, according to my doctor, it will depend on a lot of things such as the donor characteristics, my overall health etc.  So that merits further discussion. 

Needless to say, I’m depressed that I’m not finished with treatment and anxious about both the short-term discomfort and the long-term prospects.  My gut says I’ll be OK.  And of course, I’m willing to endure all of this if it results in a cure.  Nothing is certain, but I intend to soldier forward as I always do.  I’ve already been through a transplant, so I basically know what to expect there.  This will be a little different is that I have an outside donor, so I’ll have to take anti-rejection meds for a few months after the transplant.  Side effects are usually pretty benign. 

So that’s the latest.  As always, I appreciate your love and support.  I’ll update you as things come together.