Hi everyone. Thanks for being patient between posts. Honestly after I finished chemo I felt like taking a break from blogging, after the amount put out this year. Don’t worry, it’s not because I’m in a bad way!
Other than a seven week cold (yes, I can’t shift it, but at least it hasn’t gotten worse). I feel pretty good. I ran on the beach yesterday with Avery and often walk to pick up Grace on a 1.8 mile round trip with no effects at all. So physically I’m all good.
Mentally too for that matter. It’s great to be back at work and doing something. Also wanting to be active. Really it’s been a tough year and I remain in good mental shape, which I worried might take a battering during Chemo. Luckily it didn’t, so that’s something!
Anyway I spoke to my doctor a couple of weeks ago to get my prognosis. Firstly the treatment seems to have invoked a fill response. My bone marrow is much less infiltrated and my hemoglobin has now defaulted to amateur athlete good (should be between 12.5 and 15, now at 15.5… much better than 3.4).
The platelets are standard (150-400) as are the neutrophils (the white cells that fight bacteria).
So all showing good shape. The liver is fine, as are the kidneys, despite the beating that took. The spleen remains bigger than normal at 19cm but I was diagnosed with it that size and it grew to 31cm, so it could just be I have a bigger than normal spleen.
The only thing that remains low are the lymphocytes. These are the cells which has cancer in. They should be between 1-4ish and were at 52 when I had treatment. Now they are 0.4. so I am much more vulnerable to viruses (lucky there aren’t any of those about…).
So stats are good. He also said if I did nothing else my median time to next chemo would be 8 years give or take. So under 5 if I was very unlucky, over 10 if I was lucky. So he was well pleased.
Then we came to a decision. He wants me to take rituximab every two months for two years. This would extend my probable time to next treatment by a not insignificant amount (no exacts but could be an extra two, or three years). However rituximab is the number one drug that knocks out your ability to respond to COVID, out of over 300 drugs looked at in a big study. So if I do that I will be at greater risk from COVID for two more years rather than my risk lowering a lot mid next year, which is when my immune system will recover by otherwise.
So have rituximab. (Which I don’t reach to now and doesn’t have any side effects) and extend my treatment free remission by a number of years. But then be more vulnerable to COVID for two more years. Or don’t have it and potentially have less treatment free time, but be able to return to more normal behaviour mid next year, like actually seeing people and maybe even socialising.
It’s been a rough nearly two years since last Feb. I’ve not gone to parties (unlike the Tory party… Hohoho) not been into anyone’s house. Not been in shops. Basically become a hermit except for the risk my kids and Jo present. I would like to be able to act a bit normally, but rituximab may make this impossible.
To be clear there is always risk to someone with my condition, which will be higher than baseline population, but nothing like it is after chemo or after rituximab.
So I have to make the decision by early Jan and I am mulling it over. I would love to not need chemo for an average of 11 years, opposed to 8.. But the trade off….
His final advice was to avoid anyone unvaccinated and to make sure any contacts take a lat flow before seeing me. Most of my friends and family have been vaccinated, so that’s mostly fine. It means a lot to me that many have pushed it through with me in mind.
I have also had a third vaccine (full dose not booster) with a fourth booster to come when the time is ready. I will also begin returning my blood to the hospital that I needed transfused as of Jan. Hopefully not all 31 bags….
The year in numbers
6 weeks in hospital this year.
103 books read.
17 SNES games completed.
31 bags of blood received.
10 lots of rituximab received
6 bags of Bendamustine
178 needles put into me
Nearly died twice (potentially, tough to say).
Went for one run.
A lot of cups of tea.
Vaccines has 3.
Times spoken about vaccines…. More than 3.
Illegal parties had. 0
Time spent on phone games. 25 days.
Times cried. 5
Times laughed many. (My four and five year old are very funny).
Miles driven 5339.
Takeaway eaten 39. (I don’t feel great about this one).
Charity money raised. £11000.
Amazon orders 112
Alcohol consumed. 0.
So all in all its been a funny old year. :).
I read your blogs regularly, and with increasing admiration. You are amazing! I’m an ex-cancer sufferer, but my “suffering” was as NOTHING compared with yours. And you keep so level-headed. Hurrah for you!!
Occasionally you put out a What’s-Your-View? on FB. I know this blog is something different. BUT… I wouldn’t take the new drug. Eight years is long enough – research can have produced massive changes for you in eight years. In this context, eleven isn’t that many more years. And if, in those years, you’re nervous to get close to your kids who’ve been picking up god-knows-what-viruses at school – how many permutations of Covid might emerge in EIGHT YEARS??? – then I’d prefer eight years of playing with my kids without feeling too constrained.
I don’t blog… so I know you much more than you know me! It’s an odd relationship, I guess. But anyway – take it or leave it – that’s my view.
Love to you and all your family.
Fannie and John said:
Wishing you all the best in 2022. Interesting read, love the statistics. I have a ten year cancer free certificate. Wishing you the same some day.
Eileen Zuger said:
So technically your “treatment free time” is not extended by maintenance Rituxan because the maintenance infusions are also treatment.
In addition, extended treatment with Rituxan can cause chronic infections due to the immunosuppressive actions of the drug.
We have a lot of great Covid-19 drugs now, yes, but don’t be complacent about this disease. People are still dying from it every day, and by doing Rituxan maintenance treatments, you will be rendering yourself more vulnerable to it.
Rituxan maintenance has been proven to have no beneficial effect on the long term outcome of your NHL, and it has significant risks.
Marsha christian said:
It is an individual choice, I have had this cancer three times. I now stand where you are, 2 more years of maintenance, than another six month to rebuild your immunity.
I just don’t want to be alive, I want to have a life. With the Covid and all the vagrants, I
Made the decision not to do the maintenance. Having no immunity, my doctor understands my position. Hold tight it is solely your decision. Enjoy your family
Firstly, congratulations on getting through your treatment with such guts and grace! We’re delighted that you can celebrate such encouraging blood numbers – long may that continue. My husband wasn’t offered maintenance Rituximab. The doc just told him that they don’t offer it to SMZL patients. To be honest we were a bit upset at first because we didn’t understand why. It took a good few days of searching through haematology and oncology journal articles etc to find why.
As I recall (this was about 4 years ago), maintenance Rituximab extends the period of time before chemo will be needed again, the ‘remission’ (if you can call it that while being treated) but it makes no difference to overall survival.
My husband enjoyed a period when he wasn’t on treatment at all, didn’t have all the hospital appointments etc. Even before Covid he was concerned about the effect that Rituximab has on the immune system (particularly since he has had his spleen removed). Since we’re told that Rituximab makes people more vulnerable to Covid and less well protected by the vaccinations he’s keen to avoid having Rituximab again until he really needs it. Our very best wishes to you and your family. Hope you have a great Christmas and that 2022 is an easier year for you!
Jorge E Trueba said:
I love your blog man it helps thank you so much I first found it when I was first diagnosed in sept 2017 so far no treatment thankfully althou my wbc are over 100 but everything else has stay around the same and the wbc have barely move the last 2 years for whatever reason. I am glad your are doing much better I read your blog last year at some point and it freaked me out I was like how can he go from doing well to this sorry just being real I thought you wouldn’t need treatment in 20 years or at least I hope for that but I am glad you are doing well. For the most part i am doing well some times is hard to for me to get out of bed but if i am working out going to the gym ect the days are very seldom still a few times a month thou. Thanks again and cheers to you not needing treatment for 10 years or more