So I was able to hold off until Friday when I had an appointment to go to hospital. All went as usual and then went in to see the doctor who said that the Nodes had all went down a bit, the doctor is a bit hard to read at times but I think he was a bit disappointed when he said "a bit" and he had maybe been hoping for more of a change. Anyway it doesn't really matter much as they're going on with the next stage which I have finally got round to finding out about in more detail, he basically ignored me when I was saying about feeling rough the last week. Firstly there are some tests that need to be done before anything goes further ahead and so forth, the first was checking for less common serious infections such as HIV and a list of other things that I can't remember, basically a couple blood test which needed a signature to allow them to do it. There were a lot of other signatures they wanted to be allowed to go ahead with everything.
After all that was sorted they got me round to get some bloods as some of my counts were lower than they would have liked, not low, just lower, so I got a couple of units of red blood cells and a bag of magnesium to pick that up and have to continue taking some at home.
So this is what is next...
STEP 1: Tuesday I will be going in for more chemo, Cyclophosphamide. This chemo is to stimulate the bone marrow to produce more stem cells and reduce the lymphoma a bit more too. The main problem with this one is that it can cause bleeding in your bladder and so you can pee blood, but they have stuff to prevent this and IV when I'm in hospital and some tablets to take at home. This is just a day procedure and only takes a few hours.
STEP 2: From Wednesday to the following Tuesday I will be taking an injection in the mornings and evenings, this is known as G-CSF (granulocyte-colony stimulating factor). This is also to stimulate the bone marrow to produce more stem cells. With this the main problem will be painful bones, which will be a "good thing" as it is telling us that it is doing what it should be, already stocked up on paracetamol, but the last time I had this (I got it each time after the ESHAP) the pain was more in the skin than bones and the IV paracetamol combined with some morphine painkiller done nothing for it, that was just a single dose of it so I'm expecting after 14 it will be quite intense.
STEP 3: Wednesday after the G-CSF has been completed and bloods have been taken to check that there is an ample supply of cells, if not they continue the G-CSF for a few more days until there are. They will start the Peripheral Blood Stem Cell Collection, this is done on a machine something like a dialysis machine, blood is taken from one arm and returned in the other. The machine is called a cell separator and does just that, there is only about a third of a pint of blood out at any one time, but it is apparently very draining and you get very tired with the process which lasts about 2-3 hours and can take up to 3 visits to get all the stem cells they need, but you go home after each one. Once you start on this the pains subside very quickly. During this process you get an anticlotting agent called ACD-A which can cause a few problems but nothing too severe.
STEP 4: Waiting, maybe, could be a week, could be a month, could be longer. Should find out either tomorrow (chemo day) or next Wednesday (Stem cell harvest day)
STEP 5: High-Dose Chemo, the high dose chemo is given over a few days and is called "conditioning". I do not know which chemo they will be using but I do know that it has all the same side effects as the other chemos but a lot more severe as it is a high dose and all. At this stage I will be in hospital in isolation. The high-dose chemo is to stop the growth of any fast growing cells, such as cancer cells, bone marrow, blood cells, hair etc and so I would have no immune system.
STEP 6: After the conditioning is when they infuse my blood stem cells back into me (known as Day Zero), this is normally at least 2 days after the chemo to make sure it is all flushed out and does not attack the stem cells going in. The infusion will only take about 40 minutes to an hour to complete, a bit like a blood infusion. There are some side effects of this but it is mostly caused by DSMO which is a preserving agent when freezing the stem cells, nausea, altered taste, but only temporary. It is also supposed to smell like sweetcorn and can make my breath and the room smell that way too.
STEP 7: More waiting, the next part is known as engrafting, this is when the stem cells graft themselves onto my bone marrow and the two tissues grow together and start working normally again. After about 8-12 days the new cells begin to show in the blood, firstly the neutrophill, then platelets and finally the red blood cells, this can vary in time but once the body is making enough of all the blood cells I will be allowed to go home, normally between 14 and 21 days after the infusion (Day Zero)
STEP 8: After... this is when things get a bit boring and I guess more waiting and follow up appointments and check-ups. "It may be as long as 6-12 months to feel yourself again". "Cannot travel for at least 3 months ... many travel companies will refuse travel insurance", can't get some vaccinations, "most people wait at least 6 months before returning to work".
So I guess that is everything for now, it's all quite fascinating in a way, oh yeah at some point I'll be getting a central line put in, think that is after the stem cell harvest, all we need now is it to work.