Hi folks, I hope you are all gearing up for a lovely bank holiday weekend. We are as well, having seen Jo’s brother and family in the garden yesterday and more of mine in the next few days (weather permitting). We aren’t having anyone in the house, as per rules, and I keep two metres apart so but it’s damn nice to see some people again.
I had my appointment with Doctor Hodson on Wednesday, when Patrick kindly came and looked after the kids for an hour. It was to discuss next steps and so was a important chat. As per my post last week though I had pretty much worked out that Rituximab hadn’t been successful so luckily it wasn’t one of those ‘breal the bad news chats’. I hate those.
In fact, Jo pointed out I rather led the conversation, but I guess that’s common when you know the ins and outs of your condition.
Anyway salient facts during the meeting and after chatting it through were.
1. The last month of treatment didn’t work. A bit of a pain, as it did make me feel crap at times, but not unexpected. In camp worth a try but now we need to move on to the next steps and reset.
2. We need to move on to treatment line two as the underlying condition is still bad and I can’t have blood transfusions indefinitely. Treatment line two is Bendamustine and Rituximab over six months (what fun). I will have the chemo day one and two of a 28 days cycle. This will repeat six times. (I envision the two weeks after treatment I will feel crap and then the following two ok, and then rinse and repeat.
3. My red cells are still dicey. I haven’t been above 6 heamoglobin since November. It’s odd I feel good this week on 5.6 and the team seem perplexed that this is ok for me (compared to 3.4 it’s champion.) Since it is we have decided I will need three bags of transfusion every three weeks until the treatment starts to work. Having had 14 bags already this means I will likely have a total of 35 bags at least by the time we stop, if all goes well. At no point would this bring me higher than around 5.5 Hb. This means I have to have a nap every four hours or so, but can operate ok when not napping. (This week I did about twelve hours of work).
4. I’ll get an ultrasound in two weeks to check on my spleen size. I’ve been having acid reflux at night because it pushes onto my stomach (very common with smzl). It’s been a pain because Jo cooks after the kids are down (did I mention I’m not much use) and so we eat at 9ish most days. So we are going to try and somehow bring this forward and maybe have big meals at lunch, or ready meals I can just put on.
So that pretty much it. Six months of chemo starting early May, and this time it will be harder stuff. Blood every three weeks to top me off. This treatment will hit my bone marrow too, so it’s much more likely to work, which is nice.
If it doesn’t, or after it does and a few more years elapse (fingers crossed for five or more) there are other treatments to be had. So lots still to play for. There’s intensive chemo (which sounds fun. So you like normal chemo, why not double down…?)
After that you might have stem cells (to regrow the damaged cells from the intensive chemo).
Other than that you can have Car T therapy.
In CAR T-cell therapy, your own T cells are collected and genetically modified (changed) in a laboratory. These changes allow them to recognise and kill lymphoma cells that are otherwise not detected by your immune cells. The genetically modified T cells are known as ‘CAR T cells’. After they have been modified, the CAR T cells are grown in the laboratory until there are enough of them to treat your lymphoma. They are then given back to you, like a blood transfusion.
Finally you can have a bone marrow transplant (potentially) or just have the blood transfusions indefinitely. So there are a lot of lines still to go here. Another plus side is I don’t have the p17 deletion. This is a chromosomal abnormality which makes you less likely to respond to chemo and can be a real problem. I do have a haemoglobin of below 12 (yes they measure from 12) which does increase my chances of morbidity, but luckily I seem ok with this so far.
On the converse side my cancer is relatively lazy (which I’m pleased about, no one wants a go getting, up at 6 doing work cancer). But it can transform into a more aggressive type. (10% of the time and this really reduces life expectancy).
Additionally there are risks for anyone undertaking chemo, and even if it cures cancer (which is can’t do in my case, it can only put it into remission for a time) your life expectancy is shorter than those who haven’t had it. There are also active risks to a reaction to it and this can have major side effects. Finally you can long term be changed by it and be more tired and run down (although how would I tell… Am I right? ).
So it’s not a straightforward prognosis but for now my steps are concrete and I know what the plan is, which is half the battle. I’ve already written the year off from a wellness perspective and we will have to cope with that. Hopefully November will see the chemo having worked and the next few years allowing us to get back to normal. If not, there are lots of options, which is reassuring.
Sorry for a bit of a sciencey one. My next treatment is in early May, so all being well I will only put out two blogs before then. One is a piece I’ve been working on for loved ones and friends of people diagnosed (I asked my smzl group on Facebook, lots of input was had).
I know people find it tough to know what to do, but honestly our friends and family have been great. Lifts and meals and jobs in general have all been gratefully received. Just keep being great.
So that’s all. Have a great bank holiday weekend, I know we will. BBQs to be had, people to be seen in a sensible manner and naps needed periodically. It doesn’t sound that bad and there will be good times ahead, even amongst chemo and adversity. You just have to make the most of them (coffee in the garden being a covid highlight).