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CLL – Countdown to Treatment Has Begun

June 11, 2021

I’ve informed all the family and friends I could get hold of so now it’s time to blog (which they have all be notified I will be doing the heck out of for the foreseeable so are prewarned).  It’s time to let both my readers know (presumptuous to assume they are not already informed via the above, I know).

My cancer (CLL) has reached the point where it has to be treated.  I’ve more symptoms and my blood counts are not going in the right way nor at the right speed.  So, on Wednesday 23rd June in this Our Second Year of the Pandemic (or 2021 if you prefer) I will be commencing a 12-month course of treatment which, by the end of it, should have all my blood counts back to near-normal and other symptoms disappeared.

The initial appointment is on 16th June (five days from writing this) at which all the consents will be signed and timings worked out, ready for the actual treatment to start on the aforementioned date.  I will be having a treatment known as Venetoclax + Obinutuzumab. I have yet to be able to pronounce the last one properly until the third attempt at trying.

Neither of these drugs are a form of chemotherapy, instead they are an immunotherapy.  However, in the way may treatment will be dispensed and in terms of potential side effects, it is pretty much the same thing.  As far as I can tell, the only difference is that the drugs I will be on are more targeted to specific cells whereas chemo is more of an untargeted treatment.  At present I am ignoring whatever potential side effects I might have, as I cannot know in advance what I will get so I am concentrating on what I do know will happen, not what might.

My first treatment day will involve a blood test at 8am, then four hours on an IV drip having Obinutuzumab transfused into me, then another blood test and hopefully home, unless signs indicate that I should be admitted overnight.  For the first week (cycle 1 is the first to fourth week, then cycle 2 all the way to cycle 12) I will get a transfusion the next day as well.

Weeks two and three, once a week infusion, with the possibility of an overnight hospital stay for each, won’t know until it happens. I’m assuming it won’t. I have been warned it will be intensely boring; thank goodness for e-books.

Week four, onto the Venetoclax which is an oral tablet medication given at an initially low milligram dosage and is then slowly raised over the next four weeks to a clinical dose.  This dose will then be a taken every day at the same time for a year.

In the meantime I will be having Obinutuzumab once a month from week five until week 26.  After that the Obinutuzumab will stop and I will be on Venetoclax without Obinutuzumab for the next 26 weeks.

Confused?  Now factor in blood tests once a week on different days to the treatment days, as well as on the treatment days, every week for a year.  It was a really daunting schedule to hear about and it didn’t really sink in at the last meeting with my consultant.  For the first month I may be going to hospital six times a week, two or three times in one day.

Luckily the hospital sent a full list of treatment days which I have now gone through and entered the exact dates upon.  Also, I highlighted hospital dates in yellow.  I may decorate it, I don’t know.   It’s going to run my life for a year, so I feel I should do something special with the seven pages of typed instructions!

I am also so lucky to have a partner whose workplace is incredibly supportive and who are doing their best to ensure Sooterkin™ can drive me to and from the hospital, and a wonderful friend Plaster™ who has offered their services when Sooterkin can’t make it.  There is hospital transport, MacMillan specialist counselling, nursing support, and aid with finances; there is so much out there that I will be accessing to help me and my support network get through these next few months.  I remain furloughed from work until the scheme ends in September, and as I cannot work from home (which is a whole other saga) I’m not sure what happens after that.  I’m concentrating on July and August before I get to September, so that can wait a bit.

It is one heck of a commitment treatment-wise, is the most intrusive, and demands the most initial time commitment for any first-line treatment that is offered for CLL.  It is very effective and will get me back to normal-as-I-ever-was, but still living with CLL.

CLL is incurable and we never enter a remission which may lead to an all-clear.  We only ever get our conditions back down to active monitoring (which is watch and wait, i.e. regular blood tests to see how you are going and check-ups with the specialist).  The important thing is that we can recover to a point where normal lives can be resumed and the merry-go-round begins again.

Unfortunately, because this is Our Second Year of the Pandemic, living with CLL has changed.  It is an immunity-squishing form of blood cancer and we remain clinically extremely vulnerable.  It’s why my treatment was put off since my bone marrow aspiration/biopsy and CT scan in January 2020, which thankfully is not being redone.  My worsening condition is why treatment is happening now.  I have to remain in shielding, even stricter than I have been, until at least January 2022.  It’s hard to know, probably longer, but it all depends on factors outside my control and in whom I do not have much faith (*coughUKGovernmentcough*) so there is no point in worrying about it yet.  Just like those potential side effects that I might or might not have.

Here is what I do know:

  1. I’m starting treatment on 23rd June 2021.
  2. It’s time-consuming and I have the calendar to prove it!
  3. This time next year we’ll be millionnaires Rodders I’ll be in much better health.

That’s all I really need to know, for now.  I’ll let what happens, happen and deal with it then.

Image description: close up of a hamster smiling with two thumbs up, with the words “practicing positive thinking” in white capital letters over the top and bottom of the image.

From → Autobiography, health

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