The Haematologist Appointment - part II 4th August 2022
Updated: Sep 19, 2022
So, we’ve heard the R word!!!!
I even asked him why he used it? He looked at me quizzically and said, “because you’re in Remission. You either are, or you’re not.” I then stated that the Registrar said they don’t like to use it until after the Transplant, and he just shrugged that off as it was clear he wanted to get on to the Transplant discussion.
So, I’ll just say it again……...Remission……you fucking beauty. 1st job done; objective met.
Currently, as I type, I am in preparation for an Autologous Stem Cell Transplant (AutoSCT). A transplant that involves harvesting my own stem cells, about 4 million of them, storing them, depleting my own bone marrow using high-intensity chemotherapy and then reintroducing my stem cells to recover my bone marrow.
A lot of mates have asked the same questions, so I’ll try to cover it here. This is what I’ve gleaned so far and is pieced together from appointments, discussions and other resources.
I have Mantle Cell Lymphoma – a treatable but incurable Blood Cancer.
I am having the NORDIC treatment followed by ASCT, a protocol widely believed to have good rates of remission and Progression Free Survival (PFS). NORDIC has phases: -
1. Induction therapy
2. Conditioning therapy
3. Autologous Stem Cell Transplant
I have finished phase 1. Induction therapy and I’m in phase 2. Conditioning, preparing for phase 3. Transplant
People ask, why use your own cells if you have Cancer? I am not sure this is the accurate, Medical answer, but I think it is accurate enough for this layman.
The Induction phase (phase 1) kills the Cancer. The Conditioning phase (phase 2) makes me do 2 things: -
i. Produce new, fresh Stem cells that do not have Cancer, they are then stored.
ii. Finally, destroy my bone marrow completely, ready for re-introduction of my own stem cells
iii Then the re-introduction of the stem cells seems like the easiest part, to be frank.
Then the hard work starts.
Why do I say that? Well, I have been introduced to the bone marrow transplant team, and the gravity of what’s happening is now starting to be discussed openly. And along with Greenwood’s comments, it’s all falling into place. Why this stuff and detail isn’t discussed prior, I can only surmise as, it’s just too much to absorb when going through the Induction phase. I like to think I’m a relatively cluey guy and I have been completely overwhelmed by the impact of this life-changing disorder, the treatment and the detail that comes with it. Can you imagine what it’s like for other people, or people who present at the average age of diagnosis, being mid-60s?
The Nurse co-ordinator dropped the first bombshell comment, speaking to me during my last Induction Chemo session; “we basically kill you, then rescue you!”.
WHAT? What the fuck did you just say? Hold on a cotton fucking picking minute! WHAT?
Then Greenwood’s comments.
“Innes, after the conditioning phase, your Bone Marrow is dead; it’s gone. If you left Hospital at that point, you’d die basically!”.
He could see the look of surprise on my eyes and went on… “Innes, your reaction is classic. Let me help you. People think that because we are not opening you up and removing something, say your Liver, and inserting another, that this transplant is, in some way, more innocuous than other transplants that we talk about. It is wrong to have that view. This is just as serious, and we need to treat it that way because this is a life prolonging procedure that has come great outcomes, but it is just as serious as any other transplant.”
“The fact of the matter is, you have a disorder that will kill you. It will make you more and more progressively sick as time progresses. You are in remission just now, but this will come back; we know this. The transplant is a procedure that will lengthen your period of remission and, thus, it will make you better. It is a fantastic procedure.”
“In fact, with other ‘more famous’ transplants like Liver, Heart, Kidney etc, we know that they have failure rates that are marginal in their acceptability; people who have those procedures are, in general terms, going to be sick for the rest of their existence with anti-rejection complications and other issues in general associated with their treatment. Autologous SCT patients get better, fact”
He's rammed it home, well and truly. Oddly there is a great deal of satisfaction in listening to him. He speaks with absolute authority and I completely and utterly trust his expertise. Plus, everything he’s said so far has been accurate and I have no need to doubt his forecast of what’s coming.
In a strange way, at this point I feel weirdly fortunate. Fortunate to be under his care. Fortunate to be having this treatment. Fortunate that it was caught and fortunate that I will see this Christmas, next birthday and, with a decent following wind, a good few more after that.
He tells me that world-wide the rate of dying from this procedure is 2%. That doesn’t sound that flash to me to be fair. A 1 in 50 chance that I’m not walking out of this. But, what’s the alternative?
He tells me that, after Chemotherapy and NO transplant, I have a 70% chance of relapse in 5 years. The transplant halves that number basically. So in other words, after the transplant, I will have a 35% chance of relapse within 5 years. Not great but better than not having it (the transplant). He does go on to say that what he CANT say is…..whether Innes will be in the 35% or the 65%, whether Innes will have a longer remission or shorter one……he just can’t say.
He did go on to say however, that at Royal North Shore the mortality rate is way better than 2%, that 2% is the global figure but he didn’t want to share the number with me. He seems very cautious with numbers.
So, what does this week look like?
Well, I’m fucked! No simpler way to put it, and I’m not going to sugar-coat it. I’m fucked. I reckon that’s from the last round of Induction though, R-HiDAC. Rituximab (R) High dose (HiD) Cytarabine (AC); and the fact that it is the 6th cycle and all the cumulative effect of the drugs. I really am knackered.
My head was starting to show ‘peach fuzz’ and I had some very soft stubble on my face. That’s all gone again. Something for which I was prepared. I see it as a sign hopefully though, that I won’t be in the minority whose hair doesn’t grow back; that I will have hair once again.
I continue to be beset my Gastro-intestinal Issues; not profound but uncomfortable and socially awkward at times; I’ll leave that one there.
Daily, I am having 3 x Neupogen injections. These injections are to stimulate my bone marrow to over-produce stem cells. It is these that then leach into my blood for collection next Tuesday 16th August. These come in wee pre-packaged syringes with a pre-set dosage, to be injected sub-cutaneously, 2 in the morning and 1 in the evening. A side effect of these is ‘bone-pain’. It’s also seen as a good side-effect as it means it is working. My bone marrow is in overdrive, and I am producing these wee, life-saving cells at an increased rate. I take Panadol systemically just now. In the first few rounds of NORDIC, the bone pain experience was hellish if truth be told, I hated it. I was told to ‘stay on top of it’ by the Bone Marrow Team and on-fucking-top of it I will jolly well stay!!!!
A funny wee story.
I can’t bear to do the injections. Sure, if I had to, I would but I can’t. So, here’s where Kerry comes in. Kerry has assumed a few roles during this fucking nightmare. She keeps me on top of my meds, I just take what she tells me. Dangerous I know, especially as I know she’s been checking up on the validity of Insurance etc. But I do, just take what she gives me. She’s also my appointment keeper, I just go where she tells me when.
So, my aversion to the injections? I just can’t do it. I would’ve been a shite Type I Diabetic or a Junkie.
On Sunday past, it was time for my first injection. Picture the scene…
I’m lying on the bed with my (currently ample) tummy bared. Looking away so as not to see what’s going on.
Kerry wipes the area with an Alcohol Wipe to clean it.
There is a pinch of my tummy between her forefinger and thumb.
There is an suspicious but perhaps understandable hesitation.
At this point it should be noted that….
I am certain these wee injections are designed such that a 54yo male just lifts his T-shirt, grabs a bit of skin, sticks the wee fucker in and squeezes. The needles are tiny. I’m sure the procedure should take 10 seconds and be done with, without any ceremony.
Also, it should be noted that, we had had a wee disagreement about something. Some triviality had caused a wee bit of a terse exchange and we are in the post-exchange strained period of trying to recover the evening and make good of the situation. I was still of the opinion that I was right in whatever the disagreement was (as is always the way), but that I needed her to inject me, so some discretion and eating of humble pie was currently the best stance.
There was a sigh and a “are you ready?” from Kerry. We’d previously discussed the action and what the physical motion should be, so “yip” said I.
“OK, here goes”.
You’ll never fucking believe it; Kerry stabbed me twice!!!! So nervous about doing it that she chibbed me twice with the needle!!!
I’m sure I could hear “that’ll bloody show you” under her breath.