Relapse confirmed.
They've made up their minds and are now in accord with each other - we're going for the FLAG-IDA regime, which means I'll be resident on LRI Ward 41 again. Kick-off will be at 14:00 on 02/01/2019.
And I'll need a stem-cell transplant if a suitable willing donor can be found.
Thanks to Chris and to Santa, I have reading material to tide me over the first few days:
Fifth Bone Marrow Aspiration with Trephine... the preliminary results are in. My blast-count (immature blood-cells) count is too high. 12%. Treatment opinions are divided.
One consultant favours treatment with Azacitidine, during which I would be an outpatient. It wasn't stated, but I'm guessing that I'd have to attend Day Ward for each subcut dose.
Another consultant favours the FLAG-IDA regime, which would mean being resident on Ward 41 again.
They won't be able to decide until they have the full results of the cytogenetic test.
I've been told that both options lead to me needing a stem-cell transplant if a suitable willing donor can be found. But here's a thing - if you follow the Azacitidine link above, it states "Azacitidine is used when treatment with a stem cell transplant is not suitable."
Hmm...
As before, no meds to tide me over Christmas, but the next consultation has been brought forward to 27/12/2018. Whether the full results of the cytogenetic test will be available by then is moot - the full test takes several days.
So that's the family's Christmas holidays well and truly fcuked.
Fifth Bone Marrow Aspiration with Trephine... done.
They'll phone me with the results.
No meds to tide me over Christmas and the New Year, next consultation on 03/01/2019.
I'm to pack a bag ready for a long-term stay, I'm to try to stay infection-free and I'm to call it in if I feel... ill. That's an odd notion considering that I've been feeling ill and fighting infections and falling blood-counts since June.
I broke the rules tonight - the Christmas Pub Quiz beckoned. I think we managed 4th place out of 14 teams. A few beers and a curry with good friends. A top night.
There's more to life than being kept alive.
'tis the season to be jolly...
One of two foxes that visit our garden almost every night:
This morning's scheduled call from the LRI has been received. Based on the test results from the blood sample provided by me on 11/12/2018, the raised serum ferritin level and the palpitations are probably due to infection, and the raised platelet level is probably due to the blood analysis machine mistaking malformed red blood cells for platelets. I was told that it would need further investigation, so I could look forward to another Bone Marrow Aspiration with Trephine. I was given the choice of either 24/12/2018 or 28/12/2018, I opted for the latter so that I wouldn't be sore on Christmas Day. Call over.
Chris and I discussed the call. The notion of an infection was interesting, so we questioned it. We'd all been aware that I have had infections since June, and aside from the 5-week course of antivirals that ended yesterday, I'd been prescribed nothing else. Chris called them back to see if they had factored that into their plan, to find out if I should have been on antibiotics, and to find out if I would need more antivirals.
I waited for them to call back.
I just took the call... the plan has changed again. Whether or not I had been taking antivirals or antibiotics, they want me to stop taking them immediately. They want a bone marrow sample that shows the infections and their effects. And the lead consultant has changed tack, now she isn't happy leaving the bone marrow sample so late, now she wants me in on Tuesday 18/12/2018. Their plan doesn't extend beyond that, so I have no idea if I'll have meds after the sample.
As if to underline the confusion inherent in their system, while composing this blog entry the postie delivered two letters, both addressed to me. Identical copies of the letter detailing the previous consultation of 22/11/2018. In theory my GP should get one copy, I should get the other, but I received both. You really couldn't make it up - even the simple act of correctly sending a letter seems to be beyond them!
Looks like I'll have to don the winter-wear and deliver it to the GP myself. At the very least I'll be able to make sure that they receive it. If you want a job done right...
