It’s been two weeks since my last update. And my oh my, what a busy 14 days this has been.
I see that I closed my last update with a mention that I’d just had a 2nd Bone Marrow Biopsy done at North Shore Oncology (NSO), and that I was hopeful that we would see favorable results. I neglected to mention that my specific NSO Oncologist, the physician with whom I have been working for the past year and a half, elected to retire at the end of June – yes just as I was doing that last update. So my appointment the following week was with a new and different NSO Oncologist. Now NSO is a highly respected group practice in this field in my immediate area, and so the transition to a new physician in that practice should be seamless. And while my new NSO Oncologist – actually my case has been transferred to the director of the practice – has full access to all of my past medical records and so on, he has not personally “Lived” through any of this with me. And so his level of intimate knowledge of all those gory details on me, is of course nowhere near as complete as his predecessor's. That’s just a parenthetic background item, but should help put some of the following narrative in context.
So last Thursday July 12th, I met my new Oncologist for the first time, such in-progress Dr visits being done about once a month, in conjunction with a normal NSO Infusion visit. That date last week was the first day of Chemo Cycle 3, so I was primarily there for the first infusion, and “while I’m in the office”, I would also have a chat with the Doctor. Very low key. Indeed the only different aspects to this particular visit were twofold …
1. Seeing a new and different doctor than the one I’ve been seeing for a year and a half, and …
2. Having had a 2nd bone marrow biopsy done the prior week.
So with respect to (1), Dr and I spent all of 2 minutes, “getting to know one another”. Then the next question from him to me was, “so is there anything you’d like to discuss at this time?”, apparently ready to send me on to complete the Cycle 3 Day 1 infusion.
My response was, “well y’all did a bone marrow biopsy last week – what does that tell us?”.
So he sez over his shoulder, as he turns to his computer, “well let me take a look”. He does several clicks for a minute or two, then movement ceases and I can see he’s reading something, then a couple more clicks, and his head flicks side to side, as though he’s comparing two of something – presumably the results of the original pre-treatment biopsy, done back in April, which is the one that led to the diagnosis of Multiple Myeloma in the first place, against this new one from last week.
Then he doesn’t actually move at all, just turns his head, glances at me, and says … “Wow”. Just exactly that, "Wow", and no more.
So I come back with, “Well Doctor, I think that sounds promising, but can you be just a bit more specific, I’m having a hard time interpreting Wow”.
His response to that was, “You know the goal of the Chemo treatment, so I won’t bother going through all that. As a “non-secretor”, you also know that the only way we can really accurately determine how effective the Chemo treatment has been, is by looking at what’s going on in your bone marrow. So that’s what last week’s bone marrow biopsy was for. And the response I see in the results is extremely encouraging.
Now he’s got me really revved up, so my next question is, “Just how encouraging is that, Doctor?”.
He replies, “Well your original marrow biopsy showed about 60 percent Myeloma cancer cells, and 40 percent normal plasma cells – a ratio consistent with a very advanced state of disease. No wonder you were experiencing such noticeable anemia symptoms. So now that we’re halfway through the Chemo treatment, I see that the new biopsy from last week shows less than 1 percent Myeloma cells, and 99 percent normal plasma cells. And that’s an extremely rapid and significant response to the Chemotherapy treatment. Certainly confirms we’re doing the right thing”.
Scrape me off the ceiling, readers. My rejoinder to that was, “Wow.”
I then went on to pose, “Sounds like our goal has already been met – I couldn’t be more tickled. Does that mean we’re done with Chemo, and ready to move on to next steps?”
He came back, “No, while these new biopsy results are extremely good, this is just an at-this-moment finding. A very good one, granted, but we really should complete the entire planned 4 cycles of planned Chemo treatment, then do a very exacting post-treatment workup.”
Well with what I just learned about the results of these first 9 weeks of treatment, I’m definitely up for another 7 weeks. Bring it on.
So with a nod and a smile, the Doctor got up and said, “then let’s continue, and I’ll see you again next month.” And me, I proceeded to float on air, back to the infusion treatment center, to commence Cycle 3. Feet didn't touch the ground.
That’s the end of this little dialog recap – I’ve done my best to portray this accurately, as it’s so indelibly imprinted in my memory. Thursday July 12th is turning out to be one of the very best days of my life that I can recall.
And then it got even better.
As I mentioned previously, while the Oral Revlimid capsules are taken every day, the Oral Dexamethasone and Infused Kyprolist drugs are administered just two days of each week, on Thursday and Friday. And on the Thursday infusion, once hooked up, they always start by taking a blood sample, and evaluate the CBC (complete blood count) numbers from that – for a couple of reasons. One is to decide whether the amount of Kyprolis to be infused this week should be adjusted, another is to monitor the key blood count numbers on Hemoglobin levels, and on Red Cell counts, White cell counts, and platelets. Over the first two cycles, they had found my Hemoglobin levels had on four of those occasions dropped below the threshold level of 7.0, which is the boundary level between “Severe Anemia” and “Acute Anemia” – and when dropping into the Acute anemia level, that triggers an order for an immediate supplemental transfusion of Packed Red Blood Cells, which should bring up the Red Count and Hemoglobin levels, at least back into the Severe level.
So the one single Hemoglobin level number is the one we’ve been watching most closely on a week by week frequency. Throughout Cycles 1 and 2, mine had hovered between highs of about 7.5, and then dropping down to around 6.5 – then get another PRBC transfusion, which would bump it back up to 7 point something. Which would then slide down again 2-3 weeks later below the 7.0 boundary, then top off again. And around we've gone, again and again. Well after getting the great news about the Bone Marrow Biopsy last week on July 12th, the CBC numbers we got back showed that during the preceding week (Cycle 2 week 4, the week off drugs), had risen, as expected – but not just into the high 7 something level, but all the way up to 9.0 ! ! More “Wow” feelings.
So this was another clear signal that the vastly decreased levels of Myeloma cancer cells, and corresponding increasing levels of normal plasma cells in my bone marrow, were kicking my system back into action. Indeed, the Red Counts and White Counts and Platelets had also risen significantly over the preceding week as well. All very promising signs that the Chemo treatments were doing the job – all those Measurements had risen to levels higher than they’d been last Spring, before we began the Chemo treatment in May. My euphoria at seeing these numbers got even better – but then the Nurse Practitioner warned me that in coming off of the Rest week from at the end of Cycle 2, what we were seeing that day would probably be a high watermark, and further cautioned now that we were beginning active drug administration again in the first week of Cycle 3, the readings next week would likely fall off somewhat. But hopefully not back into the Acute anemia level, as we’d seen earlier.
So as we’d just passed the midpoint of the overall planned regimen of four full Chemo cycles, this past Tuesday July 17th, I had a full day follow-up appointment with the specialists at the University of Chicago, which is where we’ll hopefully do a Stem Cell transplant later. They examined all these most recent results, including the latest CBC numbers and preceding trends, and the details of the “before” and “midpoint” bone marrow biopsies, and also confirmed that the Chemo treatment were going very well, and that we should continue to proceed through all of cycles 3 and 4. That part of our day took only a couple of hours. But since these findings confirmed the efficacy of the original treatment plan, now we can start looking ahead to what would come following this 4-cycle induction Chemotherapy regimen, at which time the hope is that we will have achieved close to full remission of the underlying Myeloma disease in my bone marrow.
And that next overall step would be the Autologous Stem Cell transplant, the intent of which is to further secure that remission condition. While quite arduous, at the completion of that Stem Cell transplant procedure and recovery therefrom, my bone marrow and blood plasma should be back to essentially normal, my CBC numbers should all be normal, and then from all outward appearances, and inward feelings, I’d be in full remission, and hopefully stay there for an extended period of time – many months and hopefully even several years. While full remission means there is no active Myeloma cells in evidence, the underlying condition (still not that well understood) which gives rise to active Myeloma appearance is still lurking in the background. Which is why they say this is not a true "Cure" condition. But this overall treatment protocol, of highly targeted Chemotherapy followed by the Autologous Stem Cell Transplant, using the latest FDA approved drugs, has proven to produce remission periods much greater than those observed in the past. Indeed Kyprolis was only approved by the FDA in 2012, and there are a large number of cases of patients undergoing such treatment who are still in full remission as much as 6 years later. Very promising signs.
So the remainder of our visit to Univ of Chicago on Tuesday was to meet with members of the Transplant team, and look at a tentative schedule for my pre-transplant evaluations, then the Stem Cell Harvesting procedures, followed by the Stem Cell transplant itself, then finally the recovery plus rebuilding of the White Cells and immune system. Much more on that later, but overall those procedures will be taking place in later September and into October, this fall.
Then the icing on the cake. On Thursday this week, July 19th, was back to Northshore Oncology for the start of Cycle 3 week 2. And lo and behold, the CBC numbers this week, following the first full week of active drug administration of Cycle 3, the CBC numbers actually did not drop from where they were the preceding week following the rest week at the end of Cycle 2, but instead had actually risen slightly even further, despite being back on the drugs. Further signals that my systems were continuing to kick back into normal operation.
So that’s where we are today, and I could not have asked for a better “Report Card”. With the general active physical condition I’ve been in throughout the past year (despite the increasing breathless resulting from the continually declining Hemoglobin Levels), and the support and prayers from all of you who have been following my experiences as we’ve identified the root cause of my Multiple Myeloma disease, and subsequent start of Chemotherapy treatment, looks like our collective efforts are bearing some pretty sweet fruit. And to cap it off, the golf scores I achieved in the evening leagues I play in, this week I got the best scores I’ve seen since last year. Couldn’t ask for anything more. Sounds like a good name for a song, doesn’t it <g>.
Looking ahead, what we now face is to grind through the balance of Chemo cycles 3 and 4, which will take me to the end of August. With where we are, and seeing the most recent CBC trends, what I expect to see is slight continued rises in all those counts, and feeling correspondingly better throughout the remainder of this treatment. I’m cautiously optimistic that I’ve had my last PRBC transfusion, and that my hemoglobin level stays at or above the most recent level of 9.1 – the last time it was this good, was actually late last fall 2017, before the start of the 2017-2018 winter ski race season.
So barring any unforeseen surprises, for the next 6 weeks we’ll continue to turn the Crank on the Chemo protocol, and then when we get to that point, we’ll enter the Pre-Transplant detail evaluation phase. That will entail lots of testing, including another post-treatment Bone Marrow Biopsy, plus lots more. So until we get to that point, I don’t think there will be much of consequence to report back on here. Chemotherapy continues to be the "New Normal" for me for the next 6 weeks. But by now I'm quite used to it.
Again, I cannot tell you all how much my family and I appreciate your ongoing support and prayers – which have clearly been answered so far.
So the next installment you will probably see here will come sometime in the first week or two of September, about another 7 weeks from now, as we shift from the conclusion of the Chemotherapy treatment phase, and into the pre-transplant evaluation phases. Until then, it’ll be “business as usual”, throughout the remainder of the Chemo treatment.
To be continued in September …