Update November 2022

 

Jake and Ed (note right eye is affected by shingles)

All is well on the cancer front.  I had my check up with Cedars this week and lab results were very good.  Immune system is normal.  Kidneys and liver are good.  IGG, IGA, IGM all in normal ranges. Significantly, no M Protein detected, which is the primary measure For Multiple Myeloma.  Although this result merits further inquiry, since I was originally a non-secreter, meaning I didn’t secret the M Protein even though my disease was active.  However, it is likely that my status as a non-secreter has changed now that I have a donor’s immune system.  I have posed this question to my oncologist.  Waiting for response.

My latest health issue was not cancer related.  Despite having received the Shingrix vaccine to prevent shingles in September 2021, which is supposed to be 90% effective, I contracted shingles in late August.  The virus affected the right side of my facial nerves.  Essentially, I had shingles around my eye.  A course of anti-viral meds resolved the virus, but in its wake is a lingering postherpetic neuralgia.   This has been a problem for over 3 months.  It manifests as a burning sensation from the crown of my head to the bottom of my eye socket and extending to the tip of my nose.  It was very uncomfortable and very much interrupted my life.  I have received treatment and the discomfort is about 75% resolved.    

The shingles episode interrupted a European vacation we had planned.  Included in the original itinerary was a visit to London to meet my donor, Jake.  Two weeks into the trip, I was so miserable that I decided to fly home from Spain.  The trip involved a stayover in London, so I actually did get to meet with Jake and his family.   In fact, I spent the evening with them.  We had a wonderful time, and I was treated as a blood relative, which technically, I am.

Long Overdue Update

 What a true hero looks like!

I can’t believe my last update was in 2019. I truly apologize if that caused any concern about my recovery.  Fact is, I’m pleased to report all is going well.  I’m pretty much back to normal life.  My hair is back.  My weight is back to pre-treatment levels.  I’m active and doing as much as I feel I can within the confines of the pandemic.  When COVID first appeared, my oncologist warned me to be extremely vigilant…saying that I was extremely vulnerable to a bad result because I was immunosuppressed.  However, once I got to my two-year anniversary of the transplant, his concerns were diminished to the point that he felt I was pretty much in the same boat as everyone with regard to COVID.  As a transplant patient, I was able to get my vaccine early in the game…on my birthday in January, actually.  I have since gotten my booster shot and am as well protected as is possible.  Additionally, I participated in a clinical trial to determine if the vaccine would be effective in building antibodies to mitigate an infection.  The results were that I have ample antibodies generated by the vaccine to fend off the disease.  Surprisingly, I also carry antibodies from having HAD the disease.  So apparently, I did get COVID at one point this past Spring.  I was completely asymptomatic…never knew I had it. 

I am no longer taking any cancer related drugs.  I’ve had a few bone marrow biopsies and with even the most cutting edge diagnostics, I’m very happy to report that no cancer cells can be detected for either multiple myeloma or leukemia.  Someone upstairs is definitely watching over me.  I’ve very grateful.

On the subject of gratitude, meet Jake.  Jake is a 30-year old gentleman living in London.  Jake literally saved my life.  Jake has been a regular blood donor over the years and checked a box to indicate he would be open to donating stem cells if someone in need matched up to him.  I was that person in need and when Jake was asked if he wanted to follow through in the painful process of sending his cells to a stranger, he didn’t hesitate.  He underwent the procedure (underwent literally…he went under!) to harvest his stem cells.  The cells were immediately sent via courier to my hospital room.  They were transplanted to replace my blood DNA.  And now, Jake and I are literally blood brothers.    During the initial two years after my transplant, we were able to send communications to each other through the blood marrow donor registry with the caveat that no personal identifying info could be exchanged.  After two years, we were able to connect and we’ve actually had a live online session where I met Jake and his family.  Jake and his lovely fiancé, Emily, are scheduled to be married in September in Greece.  We are invited to attend, but it is our hope that we can actually gather in Europe next summer prior to the wedding.  It all depends on the COVID situation.  I cannot express enough how grateful I am to this young man.  He did all of this out of the goodness of his heart.  He is truly a mensch in every sense of the word.

Once again, sorry if I got anyone worried by not doing an update.  I’ll try to do better.

Article on me in the July Wisconsin Jewish Chronicle

I didn't realize they published this until today.....

Racine native receives bone marrow donation

Emily Blumenthal and Breanna West | July 7, 2019 | 4 Tammuz 5779

Edward Wolfman

Edward Wolfman spent a year on the search for the ultimate mensch — a bone marrow donor who could cure his leukemia and save his life. In the spring of 2019, Wolfman finally got the call; a match had appeared on the bone marrow registry.

Wolfman had reached out to the Chronicle during his search for a match, but before it could be reported, he found a donor from across the Atlantic. On May 16, Wolfman received his life-saving transfusion and is now on the road to recovery.

Wolfman, a Racine native, had his bar mitzvah at Beth Israel Sinai Congregation of Racine and is a graduate of the University of Wisconsin – Madison. Wolfman has lived in Los Angeles for more than 40 years, now with his wife and two adult children, both adopted. 

The donor is a man from England. Once the match was made, the donor went through a physical examination and had a procedure done to extract the marrow. A courier then took the marrow from England to Los Angeles. 

Interested in registering as a potential donor? More questions? Contact the Icla da Silva Foundation, Inc at 217-840-8302. Or visit: Join.BeTheMatch.org.

“It’s kind of weird that there’s someone walking around in England who went to a lot of trouble to save my life for no reward other than the reward of saving my life … when you define mitzvah, that’s it,” Wolfman said in an interview.

Searching for a match

Before receiving the donor marrow, Wolfman spent almost a year undergoing intensive chemotherapy, which doctors hoped would eradicate the disease. However, the treatments were unsuccessful, necessitating a bone marrow transplant for Wolfman’s survival.

Wolfman first turned to the bone marrow registry a year ago, but his initial search for a match was unsuccessful. As Wolfman waited for a match, he remained hopeful, and had “a sense that it will all work out,” he said in an interview before finding a donor.

His hopefulness led him to begin a campaign to find donors, and he turned to Jewish communities for help. Bone marrow donors must share a similar ethnic background with the recipient, and Wolfman needed a donor of Ashkenazi Jewish or Eastern European descent. He told his story to Jewish publications around the country and urged people to join the bone marrow registry. 

“They feel good for life. Someone out there is living because of their efforts,” he said of donors.

Wolfman’s connection with the Jewish community in Los Angeles became stronger throughout his struggle with the disease, he said. His rabbi mentioned him at every service and encouraged congregants to register on the donor list. Congregants drove him to the hospital at times when he was unable to drive, he said.

Now, a few weeks after the transplant, he remains in a weakened state.

“I really just want to get my life back… it’s like I’m a shell of myself,” Wolfman said.

Yet his struggles have reminded him that he is recovering, and he is grateful that he is going through this process. Throughout the ordeal, Wolfman has remained hopeful, from praying for a match to working towards becoming his old self after cancer. 

The rules of bone marrow donation stipulate that the donor and recipient must remain anonymous for at least two years. If Wolfman could meet his donor, he would tell him, “You saved my life, and I owe you a lifetime of gratitude,” he said.

Pushing Hard!

I’ve started working out in the gym in an attempt to bulk up my skinny body without getting back the fat I lost during this process (My cruising weight prior to all of this was around 175, it’s now 160..which is much healthier.)  I started out with very very light weights.  However, I’ve had to suspend my workouts since I’ve developed some shoulder stiffness.  My oncologist assures me it’s not due to any treatment, so I’m going to see an orthopedist and I’ve been getting some acupuncture.

Got my first post chemo haircut yesterday! That’s pretty significant.  It’s super wavy right now.  Pre-chemo, I had some flecks of grey.  Interestingly, there is no grey in the new crop of hair.  I suspect that will change. 

Received a significant update on my biopsy yesterday.  As I mentioned last time, my doctor sent my results to ClonoSeq, a new analytical tool that can determine whether or not my two cancers came from the same stem.  And it also is much more sensitive than standard tests to determine if I have any active cells.  The results are:

 1) the multiple myeloma and leukemia are not from the same stem.  One did not cause the other.  It is mostly just bad luck that I contracted a second cancer, although it is still possible that the myeloma treatment created an environment conducive to the growth of the leukemia.  But from an ongoing treatment standpoint, each needs to be addressed separately.

 

2) to a measure of 1 in 1,000,000 cells, no active cancer cells were detected.  Specifically, the report says: “Test findings are consistent with a lack of detection of either original clonal population.”  Initially, that caused my doctor to suggest I was cured.  But when I asked him if I could say that here in my blog, he suggested:  ”You can say – I am in the most stringent CR (complete remission) possible, no disease is detectable by the most sensitive tests (MRD-flow and NGS for V(D)J) are both negative).  Cure = 10 years disease-free!  Having said that, depth of remission is related to duration of remission.  If you have negative ClonoSeq at one and 2 years you are probably going to stay in remission a long time or forever.”  I’m suspecting that his not using the adjective “cured” maybe following the Jewish custom of not giving a “kinehora” (tempting fate).  But all in all, this is fantastic news.

The ongoing plan for now is to have biopsies every 6 months.  Blood tests and doctor visits monthly for the next six months.  I’m not on any chemotherapy or steroids.  Just some anti-viral and anti-fungal meds and some mineral supplements (magnesium and potassium).  I’m also on meds to treat the steroidal diabetes that was caused taking steroids for several years. And that is working quite well.  My glucose is normal. 

In unrelated news, we’ve been enjoying spending time with our 2-year old granddaughter Madison.  We have a weekly pajama party with her on Tuesday nights.  Lately, she’s been having trouble settling down to sleep.  So, I’ve gotten into letting her fall asleep in our family room while we watch Rachel Maddow. That usually puts her out in about 20 minutes.  Plus, she now knows what “quid pro quo” means!

Latest Biopsy Results

Rasta "Papa" with Mad Scientist Madison on Halloween

Results from latest bone marrow biopsy show no detectable cancers.  So, I’m Minimum Residual Disease Negative (MRD-).  This means that not one in 10,000 cells shows any sign of disease.   An excellent outcome.   Furthermore, as I mentioned earlier, the cells were sent for a deeper analysis to another lab that reports < 1 out of 1,000,000 cells are cancerous.  These results were shared with me during my regular visit with my nurse practitioner who is unable to interpret them…specifically if <1 is equivalent to 0.  My doctor is on vacation, so we’ll have to wait till he gets back for the definitive word.  But it is certainly very encouraging.  I’m guessing that it will be measured again in a few months and if it gets to 2 or more, that would require some sort of intervention.  But that is just me guessing.  I’ll see what the doc says when he gets back. Perhaps it is reflective that I’m on the road to cure.  Fingers crossed.

I’m feeling quite good these days and getting back to my old self.  I’ve been going to the gym regularly and lifting light weights.  Riding a bike on flat ground.  Hitting tennis balls with an instructor, although I don’t quite have the stamina yet to play a match.  I’ve resumed my role with UCLA on an institutional review board, where I sit on a committee to review the ethical and safety aspects of clinical trials in oncology.  I’m not experiencing any major symptoms or side effects.  I’ve finally resolved a stubborn cold I caught several months ago.  I do need to be extra careful in public gatherings as I’m rather susceptible to catching a cold or the flu when flu season gets into full swing.  Getting on an airplane is still not a good idea, so we are limiting ourselves to local trips for the time being.   For example, Susan and I drove up to Mammoth (about 5 hours by car) to see some fall leaves last month.  For the most part, my days are filled up with daily exercise, reading clinical trials, watching impeachment hearings, and of course, watching Wisconsin football and basketball.  I also spend time with my granddaughter, Madison.  Hillary has a late class on Tuesday nights, so we have a weekly pajama party with her.  She is equal parts fun and exhausting, but we love every second of having her around. 

My hair is growing back (don't take the above photo as an indication!).  It’s wavier than my before but the color is about the same.  Actually, fewer flecks of gray than before.  I’m still pretty scrawny, about 25 pounds lighter than before this all started.   I’m wearing 31-inch waist jeans.  But I find it to be a comfortable weight and hope to stay right around here.   People I run into, like the checker at the grocery store and friends from the gym, all say I look a lot healthier.  Man, I must have looked pretty awful before!

People often ask me how I managed to get through all this.  The only wisdom that comes to mind is to never assume the worst possible outcome.  I’m not saying to ignore it.  But just don’t assume it. Like when you hear all the possible side effects of a medication advertised on TV, don’t assume that you’ll get them.  Gad…they sound like a Stephen King novel!  You COULD get them, but don’t assume it.  I was told a whole lot of scary things could happen to me.  And I was even given odds that such as 1 in 3 people have such negative results.  I just couldn’t bring myself to assume that I would.  It’s like living in California.  You can’t be blind to the risk of an earthquake.  You should definitely prepare for it.  But I refuse to assume the worst possible outcome. I don’t expect we will fall into the Pacific Ocean if it happens or my house will fall on top of my head.  It will probably suck for a while, but we’ll be OK.  That’s how my cancer fight has been so far.    And if the worst possible outcome SHOULD happen, at least I won’t have wasted time worrying about it.

Happy Thanksgiving!!!!

Day 100 and BMB Results

Hermosa Beach - July 2019

I made it to Day 100 post transplant.  That represents the end of the most dangerous period where I would be most likely to experience rejection of the transplanted cells.  Happy to report that there is no clear rejection.  I am experiencing some troublesome diarrhea, but my medical team thinks its from my medication and not a sign of rejection. I’m riding up to 14 miles/day on a bicycle.  And I’ve been hitting tennis balls with a club pro…although I get gassed pretty quickly doing that.  It will take awhile before I’m ready to play competitively.  My hair is growing back.  The hair on my head is growing slowly.  It’s about crewcut length.  Susan says it looks less like I’m a cancer patient and more like I want it to look that way.  My beard is growing a little faster and I need to shave about every other day.  The hair in my ears is growing super fast.  Go figure!

My latest bone marrow biopsy was done last week…right on day 100.  Results came in last night.  I’m MRD-.  No cancer detected with very sensitive instrumentation.  The best possible result.  Could signal that I’m cured…although things need to stay this way for awhile before we can make that claim.  Nevertheless, it’s great news.

Next step….my lab sample will be sent for evaluation by an even more sensitive test.  This test…called clonoSEQ will do 2 things:  1) it will solve the question of whether my Myeloma and Leukemia are related to each other or completely separate.  This will be helpful information should any additional treatment be required.  2) it will detect whether there are as few as 1 in a 1,000,000 cancer cells active.  The current results can ID 1 in 10,000.  Why do this?  Cancer grows fast and a small problem can be a big problem pretty quickly. So, if any evidence of cancer is identified, it will be treated right away and I’m told it is easier to knock it out when the numbers are that small. Not sure how long it will take before the results of this test are available.  It’s pretty high tech stuff.  FDA approved, although there is a question of whether Medicare will pay for it.  Either way, I’m signed up.

Currently suffering from a cold…which can be problematic since my immune system is still very immature.  But so far, it’s behaving like just about any other cold I’ve ever had.  I’ve been warned that it may take longer to shake it than previous viruses.  C’est la Vie.   In light of all the positives, it would be churlish to get too upset about having the sniffles. 

Liberation

Day 70.  Life is slowly returning to a semblance of normal.  I’m driving, shopping, cooking, going to movies. Going to a debate watching party tonite.  I’ve been meditating almost daily and going on two mile walks most days – which I consider step 1 of my ultimate rehab.    But yesterday, I decided to try getting on a bike as step 2.  I was a bit skittish about jumping on my regular road bike.   Didn’t think clipping in was a good idea.  I was also cautioned that the skinny tires would be particularly slippery with so much sand on the bike path.  So, I went to the local bike store and rented an upright beach cruiser.  It was a real clunker.  Had 3 gears and weighed about a ton.  But it was a comfy ride and I was able to pedal from downtown Hermosa Beach to the North end of El Segundo  - about 8 miles round trip.  It took a bit more effort than I expected, but I was comfortable and quite happy to be riding again.  Especially on an almost perfect summer day along the beach.   It was very liberating.  Plan to go again tomorrow.  Next step will be to try to hit some tennis balls.

Numbers remain solid.  All systems go. 

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. 

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 4^th 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 4^th of July!

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!

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.

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!

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.

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 4^th 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.

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!!!!!

A Restful Pause

Joy

(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 6^th and final round of chemo, but that will be delayed until after New Year’s…Jan 3^rd 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!

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!

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 300^th time.

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 3^rd straight 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!