Still at Sea

It has been 2 1/2 months since my last post, which seems like a long time.  I have kept awaiting definitive news on my disease, only to have a number of weird reports that leave things even more up in the air.  That is still the case, but I thought I would simply document the current state of play.

Back in November, when I wrote my last blog post, I was still hoping the second dose of CAR-T Cells would be the magic bullet.  Well, such hopes are no longer sustainable.  Yes, I am still feeling good, but the numbers tell a different story.  As of the last post, they spun a mixed, contradictory story.  Unfortunately, now they tell a consistent negative story.

Here is the Free Lambda graph:

You can see that Free Lambda actually went up after the 9/24 infusion of CAR-T cells.  But then it went down and bounced around a bit.  But after a month that included Christmas, it has gone up dramatically,  to a level that if confirmed, will probably lead to a new treatment.

The Bone Marrow Biopsy results are equally grim:

These numbers went down following the 9/24 CAR-T cell treatment, giving cause for hope.  But the values on 12/18/18 quickly erased that hope.  They are at the highest level since fall of 2017, and in a dangerous range.

We had a ton of questions for my care-givers at Beth Israel when we met with them last week.  Have my myeloma cells evolved so that the CAR-T cells can’t recognize them?  Do they still have the protein on their surface that the CAR-T cells are programmed to identify?  The company running the clinical trial (Bluebird Bio) takes 18 vials of blood periodically.  Do they have any idea what is going on?  Can they see if the CAR-T cells are still in my body?  If they are, why are they on strike?  Basically, we wanted an insight into the science of what is going on in my body.  We e-mailed the questions ahead of time, but during our meeting on 1/25, we didn’t get any answers.  Bluebird Bio has not shared anything with the participating oncologists.  They will reach out to see if Bluebird has any further insight, but they didn’t hold out much hope.  The general experience has been that the CAR-T cells last about 6 months.  And the average duration of complete remission is 11.5 months.  So the fact that in effect I got a year without any further chemo treatments is now being read as a good response – though far less that we had been hoping for.

Meanwhile I have been feeling quite good.  We spent 2 weeks in Hawaii, the first week with my two sisters and one of their husbands.  The island of Maui was really nice, and the family dynamics were all positive.  The second week we spent 4 days on the Big Island, touring inactive volcanoes and observing large fields of dark gray lava.  Clearly these lands are very recently created. 

I’ve also been feeling well enough to do myself some harm.  I chose to split some wood to fulfill a commitment made to the Sounds of Stow auction.  Well, it turns out the wood I was trying to split really didn’t want to be split.  I ended up pounding it like crazy with a maul, and then using a wedge and sledge hammer to actually get the wood to submit to my will.  At some point I felt something twinge in my left rib cage.  It didn’t feel like anything broke, but I did stop using the maul and sledge hammer.  Two friends with pickup trucks and I delivered the wood later that day, but I clearly was not as well as I was at the start of the day.  Then later that night, I discovered I could not sleep on my left side.  In fact, I couldn’t sleep in bed at all.  I ended up sleeping in the recliner I got last year when my back was in really bad shape.  I reported all this the next morning to the doctors, and they told me to come in for an x-ray.  I did, but the x-ray showed nothing.  Then I sneezed, and something at the bottom of my right rib cage performed the same trick.  At any rate, I spent 3 nights in the recliner before I could come back to my regular bed.  The moral of the story: rent a log splitter next time, you idiot.

So why do I feel so good, when the numbers say I should be significantly sick?  I have no idea, but I’ll choose to believe the way I feel.  The latest Free Lambda number (1277) has only been exceeded in May, 2012, when I was first diagnosed, and in the summer of 2016, when I was recovering from the Whipple surgery.  Both of those times, I was feeling bad -- in 2012 because of compression fractures, and in 2016 because a Whipple really takes the starch out of you.  Maybe now I am not feeling so fragile because of prior Zometa treatments, which strengthen your bones.

All of the above was written 6 or more days ago on 1/28.  Since then I have had a wicked bad cold.  I ended up staying in bed Wednesday + Thursday + Saturday and Sunday.   I fought Barbie, who wanted to take me directly to Beth Israel’s ER for evaluation, to a compromise, agreeing to go to a local urgent care facility, agreeing to head to the ER if they spotted any pneumonia, dehydration, etc.  They decided I have a severe sinus infection, so I am taking medicine for that and beginning to feel a little better.

Last Friday they took a confirmatory test for my Free Lambda.  It has come back, and it confirms the prior reading, plus.  In the new measurement scale, it is 994, which translates to 1421 on the old scale.  This is worse than the reading in June, 2012, when I was first diagnosed.  So you might describe my disease as “rampant”.  Other than the cold, I still feel good, but the numbers are at a level that really cannot be ignored any more.  I go in for a Bone Marrow Biopsy and a PET scan tomorrow, Tuesday.  Then on Friday I meet with Dr. Nahas, my oncologist, to determine what to do in the face of this discouraging information.   The latest Free Lambda graph:

The most recent number doesn’t just confirm the 1/23 value -- it jumps up at an even greater rate.  All the more troubling.  My last visit was disappointing because there were no answers to my scientific questions.  I go into this week’s meeting with treatment questions.  What will they do to attack my current disease?

Barbie says she feels as if she lives her life at the end of a bungie cord, never knowing how wide the gyrations will be, in which direction, or when they will occur.  We are very fortunate to live so close to Boston’s wonderful major medical facilities.  Surely I have benefited for years from the newest treatments as they become available in the form of clinical trials.  I hope they continue to provide new pathways as I seem to reach the end of each trail after this very clever disease figures out how to get around the latest the researchers are throwing at it.