Friday, May 23rd, 2014
Oh my, where to begin?
Let's get the reveal out of the way first:
I still have cancer.
Now, let's hit the 5Ws (Who, What, When, Why, and holy crap, Where did you go to school?)
Who: Me, obviously.
What: Mycosis fungoides, a non-Hodgkins, cutaneous T-cell lymphoma; a cancer of the immune system.
Where: Most of my skin, somewhere between fifty and seventy percent, if I had to guess (and I do, because that hasn't been quantified).
When: Since a month or so after the second transplant. Yes, this is contrary to what I'd been telling everyone. No, I wasn't lying, I was misinformed.
Why: The graft vs lymphoma effect (GVLE) produced by the autologous stem cell transplant was either not pronounced enough, or was simply nonexistent.
To be more specific:
Dad's donor cells took root the way that they were supposed to, and I have achieved 100% chimerism, which is to say that all of the immune and non-immune cells being made from bone marrow produced adult stem cells bear his genetic signature. After the transplant, my cancer was indeed undetectable, and my skin cleared up entirely, which, while incredibly gratifying, didn't last. Some lesions (rashy spots) showed up, and kind of refused to go away. I reported this, had two biopsies taken, and was told that I had confirmed lymphoma activity on my left knee. The other biopsy, on the meat of my left hand, was inconclusive, but suggestive. This was disappointing, but not entirely unexpected, and it was hoped that the GVLE would handle it, given time.
Note: there was always a fair possibility that the transplant wouldn't handle the underlying indolent lymphoma, given that recruiter T-cells are able to replicate locally, in order to maintain a constant threat response by the body. This means that regardless of all other blood-borne immune cells being Shiny, my cancer cells were able to come back from an undetectable population count and breed many new friends, which they distributed throughout my skin, over time.
When we got back to Saskatoon, and I saw Dr. Hull, my longstanding dermatologist, he agreed with the active lymphoma diagnosis made at the Seattle Cancer Care Alliance, and expressed some minor concerns, though he was content at the time to leave dealing with it to the GVLE, since the visible presence of the disease was, as yet, quite minor, which, in the case of mycosis fungoides, is generally a very good indicator of activity. Everything still seemed like it could work out, and I was optimistic. Alright? We're all on the same page as of October, 2013. This is what I was telling everyone in person, and what I was saying on this blog.
But then Dr. Hull went on sabbatical, and, in his absence, I saw a different dermatologist, a Dr. Lichtenwald, whose diagnosis, a couple of months later, and after the nastiness on my left knee had cleared up substantially, was that while yes, I did have a lot of skin involvement, it all appeared to be compound eczema, with maybe some psoriatic complication. Given the situation at the time, this was not an entirely unreasonable diagnosis. I had always had eczema in the winter, getting a stem cell transplant vastly increases your susceptibility to eczema, it was winter in Saskatchewan, and the character of the presentation seemed rather different than that of my typical mycosis fungoides presentation (we'd also gotten a new bed, and I've had eczema in response to stranger things). I got some topical steroids, things mostly cleared up in response, and though my skin issues became persistent, they still didn't quite seem like MF. This, in conjunction with the constant positives regarding my condition from my oncologist, Dr. Elemary, is what let me believe that the transplants had been successful, and what prompted my telling that to friends and family. In all other, non-skin-related aspects, my health is excellent, particularly for someone who has had a pair of stem cell transplants.
But my skin kept getting worse. I saw Dr. Lichtenwald, a couple more times, and we started me on mixed UVA-UVB phototherapy, which helped, and things would clear up a lot whenever I tried a new moisturizer (I develop intolerances to moisturizers, typically after about a month of daily use). I limped along like that until almost three weeks ago, when, in the midst of a particularly bad dermatological freak out, I got in to see Dr. Hull. He'd been back from his sabbatical for a short while, and I'd already made an appointment to see him in June. My phototherapy nurses thought, given my then current condition, that it would be in my best interests to get in sooner than that, so I rang up his office, and they squeezed me in. It was a short, and very matter of fact appointment - my mf was quite active, and so I should be sent to Hamilton for treatment (we'll get into that later).
From Dr. Hull's perspective, this was the understanding that I should have been working from the entire time. For me, it was like having the proverbial rug yanked out from under my feet, since I'd gotten an entirely more hopeful perspective while he was away. We made an appointment for the following week to take a couple of biopsies (his resident ended up taking four, and removing two moles that Dr. Hull didn't like the look of), and I was sent to get blood drawn for a full flow cytometry. I'm slightly full of stitches, and awaiting lab results.
In the meantime, I'm switched back to the bath PUVA (psoralen-UVA) treatments that I'd been doing for years prior to the transplant, as they are the first line of defence for MF, and I'll be starting photopheresis again fairly soon. I'm also, as mentioned, going to Hamilton for total body electron beam radiation (TBEBR), pending confirmation of diagnosis, and scheduling. I don't know when I'll be going, but the typical treatment regiment takes about six weeks. TBEBR has an excellent success rate when paired with photophoresis, and should buy anywhere from three to ten years of remission (possibly forever, but I'm not holding my breath), before I relapse, and need spot radiation treatments.
What all of this means in the long term is that I'll never be uncomplicated, and that I'll never get to walk away from some form of treatment, but it also means that I should still have a fairly normal life span, albeit one punctuated with periodic medical intervention. There are, of course, worst case scenarios that are substantially worse, and best case scenarios which include permanent remission and GVLE clearing things on its own, but a long life with treatment every so often is the most likely outcome.
But hey, at least I'm writing again.
Let's get the reveal out of the way first:
I still have cancer.
Now, let's hit the 5Ws (Who, What, When, Why, and holy crap, Where did you go to school?)
Who: Me, obviously.
What: Mycosis fungoides, a non-Hodgkins, cutaneous T-cell lymphoma; a cancer of the immune system.
Where: Most of my skin, somewhere between fifty and seventy percent, if I had to guess (and I do, because that hasn't been quantified).
When: Since a month or so after the second transplant. Yes, this is contrary to what I'd been telling everyone. No, I wasn't lying, I was misinformed.
Why: The graft vs lymphoma effect (GVLE) produced by the autologous stem cell transplant was either not pronounced enough, or was simply nonexistent.
To be more specific:
Dad's donor cells took root the way that they were supposed to, and I have achieved 100% chimerism, which is to say that all of the immune and non-immune cells being made from bone marrow produced adult stem cells bear his genetic signature. After the transplant, my cancer was indeed undetectable, and my skin cleared up entirely, which, while incredibly gratifying, didn't last. Some lesions (rashy spots) showed up, and kind of refused to go away. I reported this, had two biopsies taken, and was told that I had confirmed lymphoma activity on my left knee. The other biopsy, on the meat of my left hand, was inconclusive, but suggestive. This was disappointing, but not entirely unexpected, and it was hoped that the GVLE would handle it, given time.
Note: there was always a fair possibility that the transplant wouldn't handle the underlying indolent lymphoma, given that recruiter T-cells are able to replicate locally, in order to maintain a constant threat response by the body. This means that regardless of all other blood-borne immune cells being Shiny, my cancer cells were able to come back from an undetectable population count and breed many new friends, which they distributed throughout my skin, over time.
When we got back to Saskatoon, and I saw Dr. Hull, my longstanding dermatologist, he agreed with the active lymphoma diagnosis made at the Seattle Cancer Care Alliance, and expressed some minor concerns, though he was content at the time to leave dealing with it to the GVLE, since the visible presence of the disease was, as yet, quite minor, which, in the case of mycosis fungoides, is generally a very good indicator of activity. Everything still seemed like it could work out, and I was optimistic. Alright? We're all on the same page as of October, 2013. This is what I was telling everyone in person, and what I was saying on this blog.
But then Dr. Hull went on sabbatical, and, in his absence, I saw a different dermatologist, a Dr. Lichtenwald, whose diagnosis, a couple of months later, and after the nastiness on my left knee had cleared up substantially, was that while yes, I did have a lot of skin involvement, it all appeared to be compound eczema, with maybe some psoriatic complication. Given the situation at the time, this was not an entirely unreasonable diagnosis. I had always had eczema in the winter, getting a stem cell transplant vastly increases your susceptibility to eczema, it was winter in Saskatchewan, and the character of the presentation seemed rather different than that of my typical mycosis fungoides presentation (we'd also gotten a new bed, and I've had eczema in response to stranger things). I got some topical steroids, things mostly cleared up in response, and though my skin issues became persistent, they still didn't quite seem like MF. This, in conjunction with the constant positives regarding my condition from my oncologist, Dr. Elemary, is what let me believe that the transplants had been successful, and what prompted my telling that to friends and family. In all other, non-skin-related aspects, my health is excellent, particularly for someone who has had a pair of stem cell transplants.
But my skin kept getting worse. I saw Dr. Lichtenwald, a couple more times, and we started me on mixed UVA-UVB phototherapy, which helped, and things would clear up a lot whenever I tried a new moisturizer (I develop intolerances to moisturizers, typically after about a month of daily use). I limped along like that until almost three weeks ago, when, in the midst of a particularly bad dermatological freak out, I got in to see Dr. Hull. He'd been back from his sabbatical for a short while, and I'd already made an appointment to see him in June. My phototherapy nurses thought, given my then current condition, that it would be in my best interests to get in sooner than that, so I rang up his office, and they squeezed me in. It was a short, and very matter of fact appointment - my mf was quite active, and so I should be sent to Hamilton for treatment (we'll get into that later).
From Dr. Hull's perspective, this was the understanding that I should have been working from the entire time. For me, it was like having the proverbial rug yanked out from under my feet, since I'd gotten an entirely more hopeful perspective while he was away. We made an appointment for the following week to take a couple of biopsies (his resident ended up taking four, and removing two moles that Dr. Hull didn't like the look of), and I was sent to get blood drawn for a full flow cytometry. I'm slightly full of stitches, and awaiting lab results.
In the meantime, I'm switched back to the bath PUVA (psoralen-UVA) treatments that I'd been doing for years prior to the transplant, as they are the first line of defence for MF, and I'll be starting photopheresis again fairly soon. I'm also, as mentioned, going to Hamilton for total body electron beam radiation (TBEBR), pending confirmation of diagnosis, and scheduling. I don't know when I'll be going, but the typical treatment regiment takes about six weeks. TBEBR has an excellent success rate when paired with photophoresis, and should buy anywhere from three to ten years of remission (possibly forever, but I'm not holding my breath), before I relapse, and need spot radiation treatments.
What all of this means in the long term is that I'll never be uncomplicated, and that I'll never get to walk away from some form of treatment, but it also means that I should still have a fairly normal life span, albeit one punctuated with periodic medical intervention. There are, of course, worst case scenarios that are substantially worse, and best case scenarios which include permanent remission and GVLE clearing things on its own, but a long life with treatment every so often is the most likely outcome.
But hey, at least I'm writing again.
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