Registry "oops" and treatment update

First of all, apologies to all who tried to register for the bone marrow registry – only to find that the cut off for being a donor is under age 60.   I didn’t know that when I posted it.  I do appreciate your willingness to check it out, though.  If I may be so bold….if you have offspring or friends that might be the right age and willing to check it out, please pass on the link.

Mercifully, I’m home for the next couple of weeks.  I spent 8 days at Cedars getting chemo and definitely experienced some major hospital fatigue during that time. It was a rough stint.  Among other things I developed a very uncomfortable skin rash, my heart rate dropped at one point to 35 BPM causing all kinds of concern which proved to be unnecessary, my feet swelled up several times to where walking was uncomfortable.  I was connected to an IV pole most of the time and had to drag it with me whenever I went to the bathroom, shower or for a walk around the unit.  I had two lumbar punctures (where they infuse chemo into your spinal fluid, which is where cancer apparently likes to hide – it doesn’t hurt).  On one day, I was infused with each of the following:

·         Cytoxan (chemo)

·         Methotrexate (chemo)

·         Mensa (infusion to protect my kidneys from damage due to chemo)

·         Dexamethasone (steroid)

·         Insulin (to lower glucose highs caused by the steroid)

·         Adavant  (anti-nausea)

·         Lovenox (blood thinner)

·         Heparin (anti-coagulant)

·         Rocephin (anti-biotic)

·         Vimcristine (chemo)

And of course, there is typical hospital routine of being woken every 4 hours for vitals, blood draws, pills, etc.  Not to mention having to wear those awful hospital gowns and eating crappy hospital food when you don’t have much of an appetite to begin with.

Wah wah wah. 

So, I’m home now and feeling OK.  Somewhat weakened by all the treatment, but overall comfortable and happy to be here.

As mentioned, Ill be back to the hospital later this month…hopefully for just 2-3 days.  Meanwhile, the search continues for a transplant donor.  I’ve been advised that 3 individuals have been identified as 9/10 matches and there is one 10/10 match out there.  We are waiting to hear back from them.  

Fingers crossed.

The Sh*t is Working!

(Sunset over Manhattan Beach Pier - 7/3/2018)

Results from last week’s bone marrow biopsy are encouraging.  In technical terms, it found negative minimum residual disease (MRD).  That means the test could find no leukemia cells floating around…. even with very sensitive state of the art measurement instruments.  This is clearly good news, it means that my disease is responding to treatment, which is huge.  But it doesn’t mean I’m cured or that treatment can stop.  In fact, I’m heading back Cedars today for 5 days or so of round 2 of Hyper CVAD chemo…. which is the same chemo cocktail I’ve been getting.

Despite this very positive result, the treatment path remains a bit murky.  Path one is to continue receiving chemo for about 6 months.  This is considered the low risk/low reward option.  Odds of achieving a cure are about 20%.  And there is no way of knowing if I’m cured.  Just have to live my life and hope that I don’t relapse.  Path 2 is to move forward with a transplant from a donor.  This is considered the high risk/high reward option.  If all goes well, it will result in a cure.  However, there is also the possibility that it won’t work and I will relapse and separately the possibility that I will contract Graft vs. Host disease, an auto immune response which is essentially my body rejecting the foreign cells. It could affect my quality of life.  The impact could be as minor as some dry eye discomfort or as major as a lupus like response that I would have to live with.  There is also a 3^rd path…. a clinical trial involving weaponized T-cells from a donor that have been programmed to destroy my specific cancer cells.  It is very experimental. 

The plan is to get consults from my medical team and make a decision.  Don’t need to make a decision right away.  Meanwhile, the search is on for a suitable donor in the event we do chose the transplant option.  It usually takes about 3 months to complete this process. 

So, lots to think about.  Meanwhile, I’m feeling pretty good today.  Had a lovely 4^th of July BBQ at home.  Got to admit, I’m a bit down about having to go back to the hospital today, but its only for few days so I’ll tough it out.

One other quick note….I contracted an infection last week and it was pretty hairy.  I happened to be at Cedars for the bone marrow biopsy.  But I spiked a 105 fever right after the procedure.  I honestly don’t remember anything that happened that day…I was out cold.  But Susan was there and I was a mess.  I was admitted to the hospital and spent two days of hell there fighting the infection. I was alternatively shivering convulsively and sweating profusely.   In the end, it turns out that the PICC line inserted in my arm had gotten infected and caused the infection.  They removed the PICC line, administered antibiotics and by the end of day two, my fever broke and I was fine and I went home on day 3.

Thanks again to all who have called, messaged, texted, visited and otherwise lent support.  It means so much and I appreciate it more than can be expressed. 

A final note.  My doctor said he is very encouraged by the Bone Marrow Biopsy result and is optimistic.  And so am I. 

Solctice Update

Happy Summer Solstice.  Nominally the longest day of the year.  But it should be no surprise that for me, the longest day was May 2nd when I went to the ER to learn of my new diagnosis.

To be honest, I’m getting sick of being sick.  I’m actually having a good day today.  I bottomed out a couple of days ago when my immunity levels fell and I could barely stand up.  That was rectified Tuesday when I received a blood transfusion and went from weak to chipper in the space of about 7 hours.  That’s a long time to sit around and be infused, but the fates provided me with a Dodger/Cubs double header to keep me amused during the process.  Today, I’m still feeling strong and able to do most things without undue effort.

But even on my best day, I have to say I don’t feel right.  Today, for example, even though I feel relatively strong, I can only handle walking about 4 blocks before I need to rest.  I’m not much help to Susan around the house, although on good days, I’m able to prepare dinner, run some laundry and tidy up a bit.  I’m still encouraged that I’ll get through this.  But I wish the path to healing were straight up, rather than two steps forward and one step back.  Just being honest.  This is tough.

So, here’s where things stand.  I’m on a break between chemo session and just emerging from the worst of it.  I should be feeling good for about a week or so.  I’ve been going for biweekly blood tests and was able to shift locations from Cedars (19 miles, 1 ½ hour drive) to Redondo Beach (45 miles, 20 min drive).  But my primary care is still at Cedars and I’ll be going there on Monday for a bone marrow biopsy which will tell us where we are in terms of treatment and help direct us to where we go next.  If all goes as expected, the results will show that the cancer is responding to the treatment and the plan to proceed with finding a stem cell donor will commence.  I’m told it takes about 3 months for the donor selection to take place and in the meanwhile, I’ll continue to receive rounds of chemo about every 3 weeks.

So, even though this post is less sunny than some, please know I haven’t lost sight of how fortunate I am overall with all the care and support I’ve received.  So many of you have reached out, sent lovely sentiments, items of cheer, visits and offered to do whatever you can to help. 

Actually, there is something each of you could do to support me should you feel up to it.

To date, I’ve received at least 3 bags of donated blood.  I will undoubtedly need more soon.  They work wonders. I have tremendous gratitude to the anonymous people out there who donated the blood I received. The need for blood is always there.  And if you would honor me with a blood donation, I would be extremely grateful.  It’s easy to do, of course. Just contact your local Red Cross.  

Thanks and stay tuned.

Quick update: Sunday June 10

Back at Cedars for a few days, as scheduled.  I received two chemos….specifically methotrexate and cyterabine.  I need to stay here until the methotrexate passes through me, which they think will be around Tuesday. There have been a few minor challenges on this round.    I’m getting steroid infusions which cause my feet to swell up, sometimes painfully enough that walking hurts for awhile. So they treat it with diuretics that make me pee almost continually for a while.  I also get an itchy rash on my hands and feet and I really have to hold myself back from scratching it. But all minor stuff. I’m managing fine. Looking forward to some home cooking in a day or two.

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.