It’s been a week and a half since I had my last round of Rituximab. I had four rounds of it and my white cells dropped pretty well. I also had my last transfusion of two bags of blood a few weeks back bringing my hb to 5.2 around four weeks ago, which made life a little easier.
This week I have been feeling progressively more tired. My lips are whiteish and I get headaches walking around and heart palpitations doing anything. The stairs are once again my arch nemesis. Every night I ascend them slowly like an old man, and I break out in sweats and my heart goes crazy. I think of it as the stairolympics.
So with a heavy heart (boom boom) I knew I needed to go and get a blood test as I was sure I would need a transfusion. I booked it in for today at Ipswich and managed to walk to the blood lab. (Again slowly like an old man). They took my test and I headed home. I received a call less than two hours later saying did I want to come in tonight or tomorrow am for three bags of blood. My hb is 4.2
So that would seem to mean that the rituximab treatment hasn’t really worked well. Theoretically it’s fifty days from treatment that it will show it’s full effects, but having had the four doses and a week and a half I would hope to see some reprieve. Instead I am still being in camp Caspar the friendly ghost, suggesting rituximab didn’t do a big enough job on the bone marrow. I did kind of expect this mind given the warnings by my specialist about how infiltrated my bone marrow is.
Good news (you take it where you can find it) is white cells are at 12.7 (up from two weeks ago at 11 so probably short term drop but still down from 50). Equally I was diagnosed with neutropenia after rituximab, which is common, with a count of 1.2 this has gone back up to 2.5 meaning I’m not going to actively digest myself anytime soon. (People with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).). Largely the bacteria in your own body stops playing nice with you.
Luckily this seems to be avoided for now. Additionally the platelets are back up to 88, almost healthy. (Usually 150-400).
So there may yet be some improvement in my hb but given I’m at 4 after my rituximab rounds and that they usually keep you in hospital to transfuse you at below 7, with average being 12.5-15 I am pretty sure this hasn’t worked or at least won’t keep me out of blood tranfusioning to stay alive.
This is a shame as it gives you the slight feeling that after these infusions I’m back to square one. Still as I said not unexpected.
I have a clinic appointment on Wednesday and I expect that at that point we will green light Bendamustine and Rituximab, which is a more aggressive treatment. This will (hopefully) shift the cells in the bone marrow but will also be six months of treatment on 28 days cycles, with day one and two the days of dosing. Amusingly I will also be radioactive during this time, so any blood I get will have to be irradiated moving forward. I will assume I am inching forward to those super powers I was told about.
For those in a similar boat I always make sure I look at the side effects which you may get. These are
Common side effects include low blood cell counts, fever, nausea, diarrhea, loss of appetite, cough, and rash. Other severe side effects include allergic reactions and increased risk of infection. Use in pregnancy is known to harm the baby. Bendamustine is in the alkylating agents family of medication. It works by interfering with the function of DNA and RNA.
Reassuringly I am not currently pregnant so that is at least one positive. On the other hand it does make me radioactive, so protection is pretty important during treatment, you know, if it comes up.
So it’s been a bit of a rubbish couple of weeks all told, which is one reason I haven’t blogged. Rituximab has a hit rate of around 70% but in this case it appears the effects are limited. Additionally I am likely staring down the barrel of another treatment course.
Finally someone I have been chatting to over the last few months or so died of cancer very recently. I didn’t know them that well and so can’t claim any major grief compared to their family. Still it is always a bit of a blow as it’s great to be able to talk to people who understand fully how it all feels having the C word, but they do have the habit of passing away. Luckily my condition is still relatively indolent (or lazy if you prefer) so there are still a number of treatment options open to me but being reminded of your mortality is a sobering thing.
So anyway, more bags tomorrow. A clinic on Wednesday with the probable outcome of more treatment needed and a realistic expectation I might be writing off most of this year. Still the sun seems to be making some tentative appearances and we can see people again from Monday, so it’s not all bad. Plus many of my family and friends are now being vaccinated, which makes me feel much more secure about guests.
I’ll happily have a cup of tea with anyone who wants to visit and it will be nice to have guests again, the last few months have largely been spent in my room and not being a teenage boy anymore it’s getting a bit tiresome.
Otherwise, as always, I’ll keep you posted.