“Ring the bells that still can ring
Forget your perfect offering
There is a crack, a crack in everything
That’s how the light gets in.”
Leonard Cohen “Anthem,” The Future album 1992
It has been far to long since my last post but boy have we been through the ringer!!
I do want to apologize for those folks who rely on updates from other CLLer’s to help guide them on their next steps, but Mark and I have been through quite the ordeal once again and we have honestly been grieving as he relapsed shortly after my post celebrating his 1-year anniversary following his BMT.
We have also been grieving the loss of Chris and Lola – as many of you have shared Mark also developed a lovely and supportive relationship with Chris and both of us were beyond sad to lose him and then Lola so shortly after.
Diagnosed at 45 – treated with FCR (Jan. 2011)
Relapsed Nov. 2014 and confirmed 17P treated with Imbruvica
Relapsed Oct./Nov. 2016 and treated with Venclexta and 4 infusions of Rituxan
Nov. 2017 Bone Marrow Transplant
Relapsed Dec. 2018 currently back on Venclexta
When we arrived at our 1-year anniversary post BMT – everything was going well. I posted it on HealthUnlocked, and shared how grateful Mark and I were. The recovery from BMT is no easy task - the year was overwhelming, but it was one of the best years we had since Mark was diagnosed. For those of you who have gone through BMT you know what I am talking about – it is brutal, but like I have said in the past it was our only option as Car-T was not available in Canada. It was the first time since his first relapse that Mark was not on any Cancer treatment and he was feeling like his old “new” self.
Unfortunately, in Dec. 2018 Mark’s blood counts began to rise and he was dealing with a cough/cold that he just could not seem to shake. His Health Care Team decided to run a chimeric test (ratio between donor vs. host cells) and we found out that Mark’s had dropped significantly from 94% to 53%, and his blood counts rising and Mark knowing his body we realized that his CLL was back. _____________ (please insert profanity here)!!!
It was confirmed - NOW WHAT!!
I cannot express how devastated we were – BMT was our golden ticket or so we hoped. We had worked so hard in not getting ahead of ourselves and that he “was cured”, but all the statistics and reading we had done and having passed the 1-year milestone we felt we had gotten over the hump and now we could possibly “relax” for a bit. His Dr’s also felt the same way – everything was going well.
Besides Mark’s initial diagnosis back in 2010 – as a couple we were never so sad and unable to help one another. Both of us were trying to wrap our heads around “why us”.Those of us in this Cancer world know these feelings are normal, but we also know you can’t stay in that mindset for too long or else Cancer wins. Our grieving was vast and we both knew that we would need to get past this hurdle and once again dawn our suit of armor and start the fight yet AGAIN! It was very challenging – we were lost. Thank goodness for professional help, and the support of family and friends to help us through the sadness.
What’s the plan – our situation became a little unique, we needed to try and kick start the BMT back to where it needed to be as well as treat the CLL directly. Our Health Care Team suggested that we do a “top-up” DLI (Donor Leukocyte Infusion). Mark had suggested a DLI to his Dr. back in Sept. 2018, he had read a few articles and stats supporting the intro of DLI’s as part of BMT protocol to lessen the chances of relapse. But as I mentioned earlier everyone felt things were going well so why mess with it. So, plan was start DLI’s and hope that we could activate GVHD (graft vs. host disease) which in turn would activate GVL (graft vs. Leukemia). First DLI was scheduled for Jan. 16th – pretty straight forward, very simple like a blood transfusion but a quarter of the time.
Shortly after the DLI Mark ended up being admitted into the hospital as he health was in total chaos - pneumonia, GVHD was starting to show its self (Mark had very little GVHD during his BMT), warm antibody hemolytic anemia (the presence of autoantibodies that attach to and destroy red blood cells), and we also had to treat his CLL. His Hematologist started Mark back on Venclexta as well as steroids for the antibody challenge while he was in hospital and he responded well to both treatments.
His GVHD was all over the place, his ears, eyes, mouth, skin, lungs, gut etc. – it was steroid after steroid, anti-biotic after anti-biotic etc. His energy levels were at a record low and his emotional and spiritual state was also having a huge impact on his overall wellbeing. Again, the sadness in our home was palpable and never mind the time of year, winter can be harsh in Canada.
The treatment of GVHD is a tricky one as you can’t treat it systemically because you need the GVHD to continue to activate the GVL – it becomes a balancing act but at the cost of the patient. So once his CLL was under control and his chimerism was improving, we were now at 78%, it was time for another DLI (March 9th) and this second transfusion was a higher dosage but not by much. Once again GVHD came with a vengeance but some how we managed.
Mark has been a trooper - I’m not sure I would have the strength to endure all that he has and continues to go through. He really is my hero, and I’m so grateful that he continues to fight as well as always educating and advocating for himself.
So where are we today: as of last week his chimerism is at 96.2%, there is some really positive activity going on with his T cells, (it’s crazy how granular they can get today), blood counts are “normal” and he remains on Venclexta. His energy is much better, and he is getting his skip back in his step and just returned from California meeting with the CLL Society/Dr. Koffman to set up a CLL support group in Toronto later this summer.
My apologies for the lengthy post but it has taken us this long to try to get back to a stable place in our lives, and this forum is a safe place due to the overwhelming support & kindness we continue to receive from everyone. I hope in sharing our progress that it will help others make the best decision for themselves while trying to navigate this crazy road!! And a reminder when you think that there is no place to turn somehow a small light begins to show itself!