Friday 2 November 2012

Building up to the Allogeneic Stem Cell Transplant

The third dose of the antibody treatment (Brentuximab Vedotin) was nearly two weeks ago now, and just like with the previous doses it still doesn't seem to be affecting me very much (if at all); It definitely continues to be a welcome change to chemotherapy.  Hopefully the cancer is finding the opposite though, as it would seem it had a much easier time than I did with the IVE chemotherapy!

The results of my pre-treatment blood tests also looked a bit better this time, so the doctors decided that I don't need to have any blood tests between treatments now, which is a good thing as it likely means I won't need to have any transfusions.  Unfortunately, I still have to go to the local hospital every week to get the Hickman line flushed and have its connectors changed, so even though I don't need to have the blood tests now the reality is that I'm still driving back and forth just as often.

The actual administering of the antibody treatment was exactly the same as with the second dose, i.e. I had the pre-meds and then the Brentuximab Vedotin about thirty minutes later.  As I mentioned previously, the pre-meds are intended to minimise/treat any reaction, and just consist of: Piriton (antihistamine), Hydrocortisone (steroid) and Paracetamol (analgesic and antipyretic).  I assume the Paracetamol is more for its fever reducing (antipyretic) than pain relief (analgesic) properties.  Either way, I never had any reaction, so after waiting for a bit (in case of a delayed reaction), I was done.

The whole process (blood tests, doctor consultation, and finally treatment) went a fair bit quicker this time, as I didn't spend anywhere near as long hanging around in waiting areas; Having said that, I still spent about five hours at the hospital.  The length of time typically spent at the hospital did actually come up in the doctor consultation: the nurse that joined us commented that it does seem like a long time for what is ultimately just gearing-up for a thirty minute antibody treatment; I mentioned that I seemed to be doing quite well so far on this visit, as I was currently about two hours ahead of my last visit, but just as those words left my mouth I realised that I'd likely tempted fate, so I did joke that, having just said that, the nurse could probably now wave goodbye to me on her way home.

The nurse that joined the doctor and myself in the consultation was actually my former key worker (the point of contact for a case), hence we have seen/chatted to each other on many occasions over the last few years (particularly earlier on, before she changed job roles), and consequently we have gradually got to know a bit about each other - You do have a tendency to get to know a few of the patients and staff over time.  The reason that I mention it though is that in terms of the staff it can be a bit odd in a way, as at some point you can start to think of them as more like friends/work colleagues than the staff looking after your treatment - I guess that's not too surprising when you consider that at some stages of the treatment you may even see them more than your friends/work colleagues/family.

Whilst you're frequently undergoing treatment, you do get used to seeing the same patients and staff, and that is probably a good thing really, as: it can help to lighten the mood by joking about things (despite the circumstances); generally give a less clinical feeling to it all (for everyone involved); and provide the opportunity for sharing experiences (with someone familiar with what it is really like).  However, once you have had all of your treatments, assuming of course that your treatments are successful (you're in remission), it can then leave a bit of a gap, as all of the people that you gradually got used to seeing are now either: someone that you just bump into once in a blue moon, or someone that you only see occasionally when going for check-ups.  Obviously, this coincides with wrapping your head around the idea that your treatment is finished now too, assuming the disease doesn't ever relapse, hence it can prove to be quite a lot to adjust to all at once - Particularly when considering that friends/work colleagues/family tend to stop asking whether you're feeling okay as much now, as they know you're fine, so even though the constant asking may have previously bugged you a little you can start to miss it a bit, as what with everything else that is going on you can feel a bit disconnected.

Finally, getting to the title of this post, the doctor consultation did also bring to light a slight change to my treatment plan, as the intention now is to have a PET scan after the fourth, rather than the sixth, antibody treatment; The idea being that if the PET scan shows the treatment has worked well enough for me to proceed to the Allogeneic (from a donor) Stem Cell Transplant, then I would ideally do so immediately, in order to avoid the disease from progressing whilst I wait, so that could potentially mean being admitted to a hospital in Leeds, which is different to where I've had all of my previous treatment (a necessity due to facilities etc), in December.  I guess that means that Santa's present for me this year could be a new immune system!  If Santa could also magically get that immune system into me without all of the associated treatment and side effects involved, it would be much better!

Since the doctor consultation, the PET scan has been arranged for the 22nd of November, i.e. in about three weeks, and the results of that will likely be available some time the following week, so by the end of November I may be getting ready to pack my bags for a few week stay in a type of isolation room in a hospital in Leeds.  Before then I need to actually meet the team in Leeds to talk to them about the treatment etc, and I also have to have a few more routine tests done; I actually already have my appointment for the initial visit to Leeds, which is the 5th of November (in a few days), so there will likely be another post in the near future with all of the details that I found out in Leeds.

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