Right guys, things just serious. I had my chat with the professor today and you should probably sit down. I have bad news. I have cancer.
Ha, but I guess you already knew that.
Anyway I went for tests two weeks ago and reviewed the results today. The tests I had were blood tests, CT scans (looking at my insides with multiple x-rays) and a bone marrow biopsy.
I won’t go into much detail but the bone marrow biopsy was super painful. They put a plunger in and pulled out some goo in my narrow. Then they put a chisel like needle in and shaved some of my bone off to exam. Both of these came from my pelvis. I can confirm this hurt as much as it sounds like it would, especially as the local DID NOTHING other than numb the entry point. Still it was done. The ache lasted another week, but I’m glad I didn’t have to do it again.
Secondly they struggled to get the canulla in and on the third try she had it in my hand. She asked me to grip hers tightly after she sited it. I duly obliged and managed to shoot out the canulla, the needle and cover her in blood. Oops. Still we got it working the fourth time….
Anyway good chat today. In terms of results I’ll start with my spleen. It should be around 12-14cms. It was 21cms at diagnosis and it’s now 29cms. So that’s got pretty big and is moving my organs out of the way to make room for itself.
The bone marrow biopsy came back and I am now choca full (technical term) of white blood cells which are crowding out my haemoglobin and platelets.
Finally my bloods were different to the others I’ve had, but my understanding is that different labs return different results. Still the platelets have gone up a bit, which is good news, and they had probably fallen due to the pericarditis.
White cells are 50 (should be 1-4) but holding steady. In itself this would not be the basis for treatment but with everything else going on, it’s probably time to push the button.
So two options for treatment and I was a bit blind sided. First one rituximab, second one was not spleenectomy, but rituximab and chemo.
The difference is as follows. Rituximab would be eight weeks and would probably result in me feeling a bit crap but not too bad. In this scenario it’s pretty much try and function as normal. Whilst it’s 70% successful it would give me a median next treatment time of four years.
Dual therapy on the other hand is a six month course, with a treatment on day one and two of a four week cycle. It would be energy sapping and much more intrusive. I would feel bad a fair bit of the time (probably) and the side effects are worse. Some rarer ones (less than one in a hundred) are really bad. Like developing leukemia (maybe I can go for the full set of blood cancers…).
Success rate is about the same, but median next treatment time is 8 years.
Now median isn’t the same as mean or guaranteed in any way. These figures are also from the professor and not any study I have read, so I haven’t seen the sources.
The next treatment afterwards would almost certainly be rituximab and chemo. So it literally is a decision between feeling crap for most of next year, but potentially getting another four years before we go through it again.
The prof wants me to think about it and has invited Jo and I to see him in Jan. It would likely kick off Feb or march, although if I tank we would look sooner.
Anyway that was a lot to digest and the chemo suggestion wrong footed me. I spent an hour listening to music feeling a bit depressed as is my coping mechanism. (having worked most of the morning knowing this was today for those of my colleagues reading, so no slacking).
Then I picked myself and made the decision. It’ll be chemo and it will suck, but the extra time to next treatment will be worth it (on average, let’s hope it happens, be rubbish if I get like a year before the next one).
At work, as the MD of a company I have to make decisions based on less data than this and live with them and this skill is useful right now. It means I won’t be agonising over it until my appointment in Jan.
So that’s where we are. I’ll enjoy the Christmas lockdown and then next year we’ll shrink the spleen and try and get rid of some of my white cell gunk in my bone marrow. It’s at St Bart’s so I’ll have to cadge lifts. Also by then if the vaccine is out for covid I will be trying my best to get my family and friends to have it as I will get super immuno suppressed (no point me having it. Here I’m immune to covid. Now I’ve killed all my white cells. Oh.)
I also need to put on weight, as chemo will likely make me lose more. I was 13 and a half stone when healthy and have stuck at 12 and a quarter. So more food is needed. (See my double steak starter from a few days ago). Odd position to be in needing to eat more. I guess I’ll just buy more cake.
Anyway a lot to process. Let me know if you have any questions or comments and otherwise roll on an equally bad 2021, but hopefully only for me and the rest of you get out more. :).
Marcus, well done! Super post. Brave boy. I would have made the same decision as you have made. I am very impressed with you.
Hi love sounds a bit grim. I guess most people would go for the less intrusive treatment then face the chemo in 4 years maybe but it is your call. If you did that would the chemo then be another 8 years? Just asking? Please price up taxi to St Barts and back. Would it be £100 each way do you think? Have cake do you want some more liver maybe it is working????? Love Mum
I just wanted to say a huge thank you to you for your blog and to wish you all the best for your upcoming treatment. When my husband was diagnosed with indolent splenic lymphoma 5 years ago your blog was extremely helpful and encouraging at a very dark time. Perhaps my husband’s experience can return the favour just a little.
He was worried that he would have no life during treatment and that he would just be ill all the time. He’s been fortunate and that hasn’t been the case. He did feel rotten at times and tired easily (which he found really frustrating!) but he also had good periods which were far better than he’d expected.
He had a splenectomy followed by RCVP about 10 months later. 18 months after that he was told that he had a second indolent lymphoma (Waldenstrom’s). He then had a 6 month course of Bendamustine and Rituximab, which he finished 18 months ago.
Of course he will need more treatment at some point but right now he’s enjoying hiking with the dog and feeling better than he has in years. Thank you again for your blog, which must have helped so many people.
Wishing you all the very very best.