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.