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.

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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.

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One More Time Around the Sun!

Today (Saturday) is my birthday.  Birthdays are small victories for all of us, but especially for cancer patients.  I’m particularly gratified to be celebrating this one.
My last bone marrow biopsy showed I’m still MRD-, the best possible result indicating that no cancer cells could be detected.  As previously advertised, my final in-hospital chemo treatment will begin on Monday and by the end of the week, I should be finished with hospital admissions.  From here, we go into maintenance mode which will involve oral meds and a monthly infusion of Vincristine…which takes about 20 minutes.  I should start gaining stamina and getting some hair growth.  I’ve already started a mini-rehab which consist of daily meditation sessions and daily walks.  My plan is to increase the distance of the walks and gravitate toward bike rides and other activities.
I feel grateful to so many people for getting me to this day.
  • ·         The doctors who worked so hard to learn about this disease and how to treat it. 
  • ·         The nurses – dozens of them – all of whom have been so helpful and tolerant and talented and kind.  Nurses are absolutely special.  If you ever have a chance, ask any of them why they decided to become nurses.  The stories are amazing. 
  • ·         My amazing caretaker wife who has kept taken on this burden without complaint. I could write a novel about how much she’s done and how much she did to carry me through this.  Suffice it to say I am so lucky to have her with me.
  • ·         And, of course, all the friends and family who have come to visit me at the hospital and at home, called to check in on me, said prayers and did so many things to keep my spirits up.  From my regular group of friends to friends that came out of the woodwork when then found out about the cancer. I’m afraid to start listing them for fear of leaving someone out, but special mention to the always stalwart Lee, who would qualify for about a month free parking if Cedars had a frequent visitor program.  And to Mal and Irv Sobel who visited more often than Zsa Zsa said “dahling”.

Last summer, this seemed so far away. It’s great to be closing in on end of treatment.
Happy Birthday to me!!!!!

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A Restful Pause

(click the link above to hear my favorite holiday song while you read this update.).  
I’ve completed Round 5 of HyperCVAD. One more round to go…. consisting of two hospitalizations…and treatment will be finished.  I endured another bone marrow biopsy on Tuesday.  These are painful but necessary procedures.  Results should be available right after Christmas and I fully expect they will be consistent with the last 3 – that I am still MRD negative…meaning no detectable cancer cells.   Meaning the treatment is working.
The last couple of weeks have not been without complication. Last week, I spiked a fever and had to be admitted to the hospital for treatment.   My blood numbers were extra low…which resulted in this neutropenic fever.  Essentially, the cumulative effect of the chemo was hammering my bone marrow so hard that it caused the fever.  I was hospitalized for a couple of days…received 3 units of blood and a unit of platelets to bolster my immunity.   All of this was not unexpected or inconsistent with the ongoing treatment.  I went home after a couple of days…feeling fine and today I continue to feel great. 

However, in consultation with Dr. M, it was determined that I would do well with an additional break from chemo to build up my strength and get my blood numbers up so I can fight another day.  I was actually scheduled to be back at Cedars as of yesterday to start my 6th and final round of chemo, but that will be delayed until after New Year’s…Jan 3rd to be exact.  This gives me a good long break with no treatment and the gift of a very restful holiday season here at home.  It is the longest I’ve gone without chemo since May.  It does push back my final two hospitalizations a bit, but I’m actually relieved to have the break.  My body has been pretty beat up.  My numbers are already improving and I should continue to improve throughout the rest of December. 

So I’m really looking forward to the next couple of weeks.  Celebrating Christmas in the usual manner (movies and Chinese food) and a small NYE gathering at home. 

Whatever your holiday plans, I sincerely hope you enjoy the time and are able to observe treasured traditions with family and friends.  I wish you Joy!

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False Alarm!

Had a very scary morning.


I was getting packed up for my scheduled 5b admission this morning when the phone rang.  It was Doctor M, my oncologist, calling to ask “are you coming?” I told him I was planning to be there for admission this afternoon.  He replied that I had an appointment with him in the morning. I responded I wasn’t aware of it, but that if I came in this early to see him, I would have to wait around the hospital for several hours before my bed would be ready.   He said he wanted to see me as soon as possible and of course I asked why. He then informed me that my last blood test showed my white blood cell count had gone from 3 (low for most people but acceptable for a chemo patient) to 38 (high end of normal range is 11).   This caused him to be very concerned that the differential was caused by multiplying leukemia cells. In other words, it was likely that I was in relapse. He tempered the news by adding that a perfect donor match had been identified….so the transplant was potentially back on the table.   He wanted me to get to the hospital right away. Recheck my blood. Undergo a bone marrow biopsy to confirm or dismiss the relapse, and discuss where we go from here.


I got to Cedars and was met by my nurse…who was holding back tears as she took my blood sample.  (She was right next to the doctor when he called and was aware of the bad news. Talk about caring caregivers!  God bless her!). I was then escorted into the waiting room to cool out while Doctor M reviewed my blood report.  After about 20 minutes, he ducked into the room, smiled, and said “looks like a false alarm.”


My white cell count had dropped to 7.   If there was active disease, it would have gone way up from 38.   So, the conclusion is that the neupogen injections I’ve been receiving were responsible for boosting the white count.   (Neupogen is intended to do just that). There were some things that led my doctor to suspect that the increase was more than just the neupogen effect, but those proved also to be false indicators.


So, I’m fine.  But I had several hours to contemplate the prospect of relapse.  It was very scary.


As for the donor, Doctor M wants to evaluate my condition after this hospital stay with a bone marrow biopsy.  If I remain MRD negative, the plan would be to finish off the chemo and move into maintenance mode….while keeping the transplant in the quiver.   If the biopsy reveals even 1 cancer cell, the transplant would be more urgently pursued. But there is no reason to believe that I’ll prove to be anything but MRD negative.   


So, I’m now in my hospital room awaiting round 5b drugs and feeling very relieved.  Still hoping to be home Monday or Tuesday.


Phew!


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Quick Update

Checking back into Cedars today for Round 5B.  The past 4 “B” arms have been comparatively easier and shorter than the “A”s.  Primarily because I am able to pass the methotrexate infusion relatively quickly, which is the criteria for getting my release.  So…if following form, I would hope to be home by Monday evening.  Although Tuesday may be a more realistic goal.  We’ll see.
This has been a rather rough respite since my last release.  I suffered from a lingering cold which finally got antibiotic treatment.  While the antibiotics seem to be clearing the congestion, they have caused gastro-intestinal problems (I’ll spare you the details), so things have been rather uncomfortable.  I kind of feel a bit cheated as far as my recovery time.  But nevertheless, I’m looking forward to checking off this hospital stay.  Once I do, there will be only two remaining.  So the end of treatment is now clearly in sight.
I’ll be at Cedars for the first few nights of Hanukkah.  Not the worst place to be, as there will likely be some festivities.  Our family celebration will be observed when I get home. Meanwhile, Happy Hanukkah to all my fellow festival of lights celebrants.  And while I’m at Cedars, I plan to watch Adam Sandler’s Eight Crazy Nights for about the 300th time.

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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 3rdstraight 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!

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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!

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Downhill

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. 

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