Treatment update - June 6, 2018

The final results of my bone marrow biopsy are in.  They reveal no detectable chromosomal anomalies.  Consequently, there are no specific targets for targeted therapy.  This is neither good nor bad news.  It just means that the current protocol will be continued…and somewhat obviates a donor stem cell transplant.

So, here’s where things stand.  I’ve completed one round of what is called Hyper-CVAD chemo.  CVAD represents the chemotherapies I’ve received so far…..Cytoxan, Vinicristine, Adnam and Doxorubicin.  I will be going back to Cedars today to receive two more chemos….methotrexate and cytarabine.  I’ll be there for 3-5 days marinating in these new therapies.  I’ll be released when the methotrexate passes through my system.   But I need to stay in the hospital so they can monitor how the drug is affecting me.  It has can negatively affect renal function, so they want to monitor me while it is circulating my system.

Additionally, while I’m there, they will perform a comorbidity index  (CMI) to make sure I’m strong enough to withstand the transplant.  As I’ve said earlier, this will be different from the transplant I received 7 years ago in that it is an allogenic transplant…. I’ll be receiving cells from a donor.  So, the process will involve tapping a registry of available donors.  Meanwhile, there is a lot of blood typing and matching that will take place.  The process takes several months.  I’m told that Caucasian patients have very good luck in locating a very good match. BTW:  These match searches often begin with identifying close relatives.  But the search is typically limited to siblings and offspring, where the odds of a match are about 50%.  My sister would not be good match because of her age and overall health.  And my offspring are adopted, so they don’t qualify.  Moving beyond that to cousins, etc. drops the odds to about 18% of a good match…so they typically move right to the registry instead of pursuing that route.

While I’m moving toward the transplant, I’ll continue to receive the chemo.  I’ll alternate between the Hyper-CVAD and the stuff I’m getting today.  I’ll get infused about every 21 days.  Enough time for the cancer to do it’s thing and for me to bounce back.  I bounced back pretty well from the first round.   My immunity numbers are almost normal…meaning I’m less susceptible to infections and my energy levels are increased as my red blood cell count goes up.   Today, I feel about 80% of normal.  It will be short lived, as I’ll be getting the new infusions starting later today. 

So, the good news is that I’m feeling pretty good and responding well to treatment.  The bad news is that this is all going to take awhile…several months.  But the ultimate good news is that I am on the road to a cure.  And…as a bonus…I was advised that the allogenic transplant has a good chance of curing the myeloma also.  So, on balance, this is good news and I remain optimistic.

The Ritual

Pretty much on schedule, clumps of hair began showing up in the drain….so the ritual of the buzz cut was celebrated yesterday.  FYI:  For safety and aesthetics, it is best not to go down to shiny scalp at the outset.  I good “Elvis goes to Germany” military cut prevents things like sun screen and accidental infection.  And I must admit, I do like the fact that I can wake up in the morning, shake my head, and I’m good to go.

It’s been a tough few days.  Tuesday was particularly rough.  Following Sunday’s chemo infusions, my immunity levels dropped as intended…leaving me very weak.  With very few red blood cells to power me, I was dizzy.  I sported a grey pallor.  And my energy levels were pretty low.  I had a scheduled doctor visit and based on the results of my blood tests, they elected to transfuse some blood into me to bring me back to equilibrium.  It took a few hours, but it worked.  By the end of the transfusion, I had my normal pink glow and was able to manage my normal activities.  I’m a bit weaker today than I was right after the transfusion, but I’m getting around just fine.  I’m eating and sleeping very normally.  Pretty comfortable overall, although clearly it is cold up there when you don’t have a head of hair to warm you up.  But not to worry, I have a large cache of head coverings from the last go round.

Still quite a gauntlet of treatment on schedule.  I’m continuing the induction phase of the treatment, which is essentially the old school assault of classic chemo to search out and destroy all things that could be cancer cells in my bone marrow.  Healthy cells get swept up in this assault as well, hence my weakness.  I’m on a hiatus of a few days from the chemo right now. But I’ll be going in next week so they can evaluate when I’ll be strong enough to take on the second round.  If my immunity numbers are too low, they will wait a week or so before resuming.  If not, I’ll check back into Cedars for a few days of chemo.  Significantly, we are still waiting for the final results of my bone marrow biopsy which will contain info on my specific chromosomal makeup.  I’m not sure if I’m explaining this 100% accurately, but here is my best understanding….the pathologists are looking for specific genetic markers that define my specific form of leukemia.  If found, there are targeted therapies that can be applied to wipe it out completely.  If not, it is good to know that these markers are absent and other therapy approaches can be used.  So taking the results of the induction chemo that I’m undergoing right now, combined with the genetic information, my treatment should be a rifle shot to a cure as opposed to basically the same chemo treatment regimens that have been used for the past few decades.    

So, regrettably, I’m not close to the end of the treatment cycle and I will still have several hospitals stays and a lot of poison to absorb.  It won’t be much fun, but there is every reason to believe strongly that it will result in my getting back to my normal lifestyle in a few months or so.

Meanwhile….no major complaints.  My appetite is very good.  I’m sleeping through the night. I’m getting unbelievable support from people who check in on me, call and visit.  Susan has been a rock.  My medical care is top notch.  And I’ve got plenty of diversions.  So once again, thank you for all the good wishes and check ins.  Overall, please be assured I’m doing just fine.

Remembering Steve Taylor

Woke up this morning to the awful news that my friend and classmate, Steve Taylor, lost his battle with multiple myeloma.

Many of you who knew Steve will be surprised that he was afflicted with cancer.  Steve didn’t want people to know about it.  I found out through the UCLA  GSM grapevine and I felt that given that we shared this affliction, I would reach out to Steve.  Steve’s initial preoccupation with I called him was “how did you find out.”  Of course, I demurred on it and it took a bit of time to get past that boundary.  But eventually, I convinced him that collaborated on shared information was in our mutual interest and things settled down.  When I asked Steve about why he felt it was so important to keep things on the DL, he mumbled something about not wanting his clients to know he was anything but 100% capable.  But I never bought that.  I think it was just Steve being Steve.  Steve needed to be in control.  It was nothing more than that.

Steve called me last week when the word of my new cancer struggles got to him.  We talked and he filled me in on his situation…. of course, with the caveat that the information goes no further. (I do feel at this point that the statute of limitations has expired and that I can say whatever I want…. although in the back of my mind, I can hear Steve saying “Why are you telling people I’m dead?  That’s private!”)  To be honest, it was clear from our conversation that things were not going well for Steve, although I really didn’t get the idea that things were as desperate as they turned out to be.   So, we reviewed our mutual treatment protocols and I kept telling Steve to fight as hard as he could fight and I would do the same.  And then I got the info this morning that the angels took Steve.  (I can only imaging how that conversation with Steve and the angel went down.  Steve telling the angel that his facts were totally wrong!)  It should be noted that Steve and I were pretty far apart on the political spectrum.  Steve’s perspective on things like homelessness were anathema to me…it seemed like his solution was about two steps away from putting them in space capsules and shooting them to the moon. (Clearly that’s not fair…it was far more nuanced than that.  Steve was always the smartest guy in the room.  He was always generous to his friends and family and those in his immediate universe…but his rhetoric on macro issues was far more to the right of the spectrum.)

This really should all be about Steve, of course.  But I have to make it about me to the extent that emotions are very raw on this subject.  It is always hard to learn that a fellow traveler has lost his battle. This one is particularly close to home, since Steve was such a close friend.  So, what does that say about my vaunted positive attitude and determination to fight and win.  Such news definitely takes some of the wind out of my sails.  But in fact, …. I understand that Steve had a particularly aggressive and treatment resistant form of the disease.   Cancer doesn’t come in neat little boxes. Everyone’s genetic makeup is different and some, like Steve, have chromosomal abnormalities that handicap them in fighting the fight.  To this point, no such abnormalities are showing in my genetics…so the fight continues.   But be assured…this is a sad sad time and my heart hurts for Steve and for everyone that cares about him.  He’ll be in my heart as long as I have breath.

Quick update:  Nothing much new to report.  I’ve completed the first round of chemo and am resting comfortably at home.  I’m eating and sleeping well.  I get easily fatigued, but it’s not too bad.  I just have to take things slower.  Today…Monday May 28…is a no chemo day and I’ve had a lovely breakfast and am looking forward to getting some fresh air (I can walk around the block pretty well) and some visitors. 

God bless you Steve.  I miss you, love you, and a will remember you.

Hospital Rhythm

There is a definite rhythm to a long term hospital stay.  It is not like life on the outside. The beat is driven by food delivery, doctor rounds, med administration, taking of vitals, tests, blood draws, etc. All of which can happen at any hour...day or night.  Sleep is ancillary. If you are scheduled for vitals at 2 pm and your blood draw is at 3, so be it. So you learn to catch little cat naps of an hour or two when you can.

I’m currently sitting comfortably here at Cedars Sinai….by all measures a first tier hospital.  I’ve got fractured ribs (don’t ask!) and a line of chemo therapy in my PIC line delivering what we expect to be a knockout punch to the leukemia cells.    Earlier today, the also set me up to toss some chemo directly into my spinal fluid….which is apparently a place they like to hide. It did’t hurt at all

Chemo began last night around 10pm.  It was proceeded by a consent form reading that was apparently written by Steven King about all the possible side effects of what I was about to endure.   It definitely scared the crap out of me, but it went better than I had feared. The only hiccup involved severe tremors that began around 2 pm. They responded by suspending the chemo, giving me some meds, and turning it back on at a slower rate.  They also hopped me up with IV Benadryl (imagine!) and some Adavan that succeeded in conking me out so that I actually got pretty close to a normal night of sleep.

So, as of now, I’m resting comfortably.  Not having any bad reaction to the poison pulsing through my body.  And looking forward to moving things forward so I can get home and reboot my life.  I’m again very grateful for all the kind support. It is my oxygen. Thank you all!

Calm Before The Storm

I was delighted to receive a pass to go home for a couple of days this weekend.  Since they don’t initiate treatment over the weekend and I wasn’t being treated for anything, it was deemed that there was no reason to stay in the hospital.  So…for two glorious nights…I was able to sleep in my own bed, shower in my own shower and pee whenever I wanted to without having to unplugged from anything.  Now that the infection has cleared up, I’m feeling pretty close to normal.  I bit tired, but overall quite good.  I’ll be going back to Cedars later today to get another bone marrow biopsy and possibly start treatment.  The photo above is from yesterday.   Next one I post will probably be with a shiny pate.    Emotionally, I guess it’s fair to say I’m in the pocket. Being home helped my overall mood.  I’m anxious about what I’m going to have go through, but optimistic that the result will be a good one. I have a lot of faith in the team assigned to my case.  And the outpouring of support from all of you has been very comforting.  I truly appreciate it.

Nasty Cousin

So, I was feeling kinda crappy.   It felt like I was coming down with the flu.   Violent shakes. Dry mouth. Overall malaise. So I covered up with blankets, drank Gatorade, and endeavored to tough it out.   But after a couple of days and admonishments from Susan to take this more seriously, I visited my primary care doc who examined me and said “I don’t like the looks of this.”  He got my oncologist on the phone and she didn’t like it either and they both felt a visit to the ER was in order. That was April 30. I did as I was told and went to the hospital.   It’s May 12 and I’m still here. Turns out I had a case of pneumonia. But there is more to it. The infection came about because my immune system was severely compromised. White blood cell count was about ½ of what it needed to be to fight off an infection.  Suspecting that perhaps I was in myeloma relapse, I was sent for a bone marrow biopsy. Turns out the myeloma wasn’t the problem. It was much worse. I am now afflicted with leukemia. Acute Lymphoblastic Leukemia (ALL) to be specific. Like multiple myeloma, it is a blood cancer.  It is not the same disease….and I’m not close to being able to articulate the difference, but suffice it to say it’s a nasty cousin. It quickly takes over your immune system, replacing good cells with cancer cells that do not protect you from infection and disease. It can be very aggressive and must be treated forcefully.  That means heavy doses of chemo. Unlike myeloma, successful treatment CAN result in a cure. But there are a lot of variables to consider in designing treatment….as there are specific genetic markers that can spell out the specific treatment protocols that can be more or less successful based on the chromosomal composition of the cancer cells.  At this writing, we are waiting for more pathology results that will dictate my treatment….but there is very little question that it will involve several weeks of in-patient chemo…..the really ugly stuff that will make me lose my hair, cause nausea, and make feel beyond shitty. Bottom line, I’m in for a tough fight for the next several weeks. But I’m steeled for battle and prepared to win.  

Emotionally, this is a blow as you can well imagine.  Apparently it came out of nowhere. A month ago, it may not have existed.  But suddenly, cells decided to mutate and boom…..here I am. It may or may not be related to the myeloma.  Perhaps more a by product of the transplant than the disease itself. But the fact is, I have two discrete forms of cancer.  Lucky me!

It’s upsetting to be sure.  Not how I planned on spending the summer of my 66th year on earth.  But the fight will commence and I have every intention of winning it.  But it really truly sucks.

Consider this a very abbreviated update.  I’ll fill in some of the spaces as I get the energy.  Consistent with my original design, this blog is primarily a cathartic device for me to manage the disease.  So thanks for tolerating the self indulgence and welcome to the new journey.

RIP Big Boo

Read the news that Don (Big Boo) Baylor passed away.  He was a great baseball player and bravely fought multiple myeloma for 14 years.  In 2014, his team, the Los Angeles Angels celebrated what were then the only MVPs in club history by asking Vladimir Guerrero to throw out the ceremonial first pitch and Baylor to catch it. Guerrero’s throw was low and away, and Baylor’s right ankle gave way.  He limped off the field and was taken to the hospital where he learned his leg was broken.  It was the cancer, of course.  This is sad news, indeed.  He was a great player and a great human being.

As for me, a few updates.  After suffering from some nasty side effects (frequent diarrhea and muscle cramps) I visited with Dr. V and he suggested we take a medication break.  So, the Revlimid is suspended for now and I’m only taking Prednisone – every other day.  I plan on visiting with Dr. V again when I return from a vacation at the beginning of September and at that time we’ll determine whether to back to Revlimid, try something else, or just stay with a steroids-only regimen.  Dr. V did say he has several patients who had gone to steroids only and were doing well.  That would be wonderful, of course.  But obviously I’ll want to stay with the best regimen that maintains my remission even if it means dealing with some side effects.  So…we’ll see.  Meanwhile, I’ve been off the Revlimid for about 3 weeks now.  The side effects have diminished considerably and I’m also sleeping a lot better.  I was waking up in the middle of the night previously…unable to get back to sleep.  This could be due to the medication adjustment or to the fact that I’ve begun a practice of daily meditation.  Whatever it is, it’s nice.