I was released home the next day and also had a chat with the Professor. They gave me an echocardiogram and concluded it was pericarditis. I didn’t see a doctor before I left, so I had to Google some of the information on it. Also my uncle had it when he was 22, so I broadly know how it works.
I’ll have to stay laid up for about three weeks, keep taking my colchicine (anti gout medicine) but it also works on other inflammations.
So since them I have been on my back most days, being up and about less than an hour. Every time I move position my chest hurts and I get a very strong ache in the throat. Lately my ear has started to hurt a bit too and the chest pain has moved over to include my left shoulder.
I do think it is getting better though, but it’s tough to tell as it’s incremental and slow.
In terms of my greater condition I spoke to the Prof and he said when the pericarditis eases I should call him. I then need to go up to St Bart’s for a cat scan and a bone marrow biopsy (which I am in no way looking forward to). This is where they take a sample of your bone marrow from, most probably, my pelvis with a big needle, to find out what’s going on.
Once that’s done we will know of a) my spleen is gobbling up my platelets or b) my bone marrow doesn’t have room to produce the platelets I need with all the white cells it’s making. If it’s A then it will likely be a spleenectomy, but could still be rituximan, if it’s B it will definitely be Rituximab. This treatment will take place by early next year, so let’s hope a covid spike doesn’t put it all into disarray (or worse yet I get it).
In terms of Rituximab, it has a 70% full success rate of reducing the white cell counts (and will correspondingly reduce the bone marrow penetrations of my white cells). It’s has a 20% partial success rate and a 10% failure rate.
Given this will be my main chance of success and that a successful treatment will put me in remission for 5-10 years, let’s hope it doesn’t fail. If it does, well, that’s bad.
If I do go into remission I can then have it again when it gets severe and it will have a lower success chance with a shorter remission, but theoretically you can have it a few times, which would be great.
So best case is a fair few more years, maybe the 23 I hoped for from the beginning to get me to 60. (When Grace and Avery will be 27 and 25, which wouldn’t be so bad for them. I mean obviously never great, but not bad per say).
Worst case is my condition has changed from indolent, and rituxmab doesn’t work. Then it won’t be so hot.
Given ten years at diagnosis is a 50/50 life expectancy (but not forgetting the average age of diagnosis is 60ish). I have been very lucky to not need treatment for seven and a half years.
I’m very glad that you are already back home, with a diagnosis, even if you have to lie in bed for a “few” days. I’m sure you will know how to find the way to spend time as best as possible and that your children will help you the days spend really quickly!
I also imagine that you have been preparing yourself since a long time, to start a treatment, rituximab or splenectomy.
When you say that your daughters will be on their 25’s, remember also that research is progressing, even though our lymphoma is only a minority one and there are doctors all over the world that know and investigate our “problem”. I’m sure, you will play with your grandchildren!
All the best, Elena
Anna Mary Ellerbee said:
Sorry you have to stay “down” for a while, but happy they found the problem and are treating it. Re SMZL I am just loving reading what your Dr. has told you. It is such a clear explanation of the options and the “what ifs”. Thank you for posting here. I hope you will post on our FB group too because this has really helped me and I’m sure it will help others.