Hi folks. I hope you have had a good week or so since I last posted. cases look like they might be on the down (although hospitals are still more full than first spike) so that’s a little hopeful. As is the vaccines…. Once the second doses are given.
From my side it’s been a busy week. I had a cat scan. A blood test and a consultation. I’ll start with the good. My haemoglobin were (as of Monday) 67. which is good as after the first three bags I went from 34 to 46 and we didn’t test after the next three. So nearly two weeks in its holding low.
I will note that if I went into hospital and returned that they would immediately transfuse me to over 70. However as we are treating the symptoms not the numbers and I feel okish that’s been alright. I’m tired a lot, but can look after the kids for an hour or two and just need to lie down sometimes.
My MRI days is next week for the head, so that will be interesting. Hopefully the eyes are fine. Tbf they seem much better with less anemia, so I hope it was that.
Finally the cat scan showed no change, so that was good too considering what I put my body through with no haemoglobin.
As for my treatment due on Tuesday it now isn’t. Recommendations have come through from public health saying I should have the second vaccine dose before treatment. Accordingly we are delaying my transfusion from Monday 8th next week to Tuesday the 16th a week after. (If I deteriorate quickly they’ll squeeze me in). I’ll get a blood test and the vaccine on the Monday the day before, so the 15th. The vaccine needs to be left a week to bed in so now my rituximab treatment will begin the following week on the 22nd.
It’s interesting I can get the second jab within the three week period recommended but people waiting for chemo can side step the wait. So that’s positive I suppose. It does mean I now have another two weeks to wait for the rituximab, and therefore a period of time where I am not feeling great is extended by a fortnight. Still I don’t feel too bad, just breathy under exertion and tired. So it could be worse.
I have also been told I will almost certainly respond badly to rituximab, due to my volume of white cells, and so they will only give me 100ml the first day and the rest of the normal dose the next, meaning I have to stay in hospital.
None of that is the bad news though. Merely annoying
The bad news is I finally got my bone marrow biopsy results. As of September white cells have infiltrated over 90% of the bone marrow. This is very heavy involvement and has squeezed out my reds. Rituximab kills all white cells in the blood stream, and will also sort out the organs, notably the spleen where I also have a lot. It’s not good at cleaning out bone marrow. So that means in the general bell curve of treatment where five years remission is the median I’ll likely be less. A lot less.
Given 59% of people have a full response and about 19% a partial I will likely be needing treatment again in six months to a year unless we have some luck. That treatment would definitely be the Bendamustine chemotherapy. And it would mean rolling from one to the other with little gap. Oh and another bone marrow biopsy which was not entertaining.
So I asked if it was worth doing Bendamustine now instead. Doctor Hobson’s opinion is that with Covid where it is, and how immuno suppressed you get with chemo (it clears the bone marrow as well) they want to do the rituximab first. Then the chemo when covid has hit summer lows (we hope).
Basically this means treatment in a few weeks. Immunosuppression from which is 12-18 months. Then another treatment mid next year best case, or autumn this year worst, and then immunosuppression from that (adding to a good two and a but years of immunosuppression). The chemo will also be six months of treatment at the beginning of every month and so will make me feel pretty crap at that time.
So all in all not ideal. Still at least there are a number of treatment paths to be explored, and there is no reason to think Bendamustine won’t give me a good remission period, although you can build up a tolerance to it a second time, so it’s not a continual roll out thing (they did say the second time you can get intense concentrated chemo if you need to. I worry I might glow in the dark if I do).
So it’s bad, and annoying that it’s been pushed back and lengthened, but there is no reason to think that I won’t get a good clear run after the Bendamustine without treatment or worry about it. That’s what we are aiming for.
Thanks, as always, for reading. I hope you have a good rest of lockdown. Just remember that even if it’s been tough spring is round the corner and covid is likely to be much lower in the sunshine months. Plus you can go for walks without drenchings. Hold onto that. Not long to go!
Fannie Scholtens said:
Thanks for sharing and you and family have been in my prayers. I love your positive attitude when I am sure there a numerous down days. all the very best