The plan for the next few weeks....

About a week or so ago we found out Becky wasn’t a match for the Bone Marrow Transplant. This means I will now go to the register to find a match. There is a good chance we will find someone though.
The staff at Nottingham have generally been fantastic, we were given some bad advice regarding temperature one night but we think it was a young SHO who wasn’t clear on the protocol and it has since been sorted anyhow. I had a temperature last Thursday but it was a minor scare and I was fine the next day.

Now I have had my first cycle of GEM-P they want to collect stem cells.Basically stem cells are the building blocks of your blood cells, they can turn into red cells or white cells or platelets - whatever you need, so if you cut yourself your stem cells form platelets to replace the ones you lose (i think its platelets anyhow if memeory serves me right!). They want to collect my stem cells in order to allow them to give me high dose chemotherapy which would blast the tumour but the chemo would destory all my stem cells so after they've given it they then return my stem cells to me and they help my system to recover and get back to normal though it takes a few weeks or so. You are also at risk of infection during this time.

However they haven't ever collected stem cells off the back of this GEMP chemo I’m having. They know it has been done and there has been success with it but they haven’t got any detailed literature on it. they have been ringing london hospitals inc the Marsden one (they tried ringing the day it was on fire apparently!) to try and find out at what stage my body would start making stem cells after this chemo has finished but they haven’t been able to find out much. So basically we play blind! Obviously they can base decisions on other regimes that they collect stem cells from and they have a rough idea but really its guesswork. They are hopeful they will be able to get stem cells, they see no reason why not.

So now I will go back and forth to Nottingham 2 or 3 times a week to have bloods done, they will then decide from these results what to do at each stage. I go in tomorrow for a blood transfusion as my counts have dropped and they will start checking things from then. I will also start on GCSF injections tomorrow all being well. They are just small injections into the stomach every day for about a week. They stimulate your bone marrow to make white cells which when they go up I should make stem cells too - that’s the hope anyway, as my white count goes up my body starts producing stem cells. If my white count goes up but I am not producing stem cells that’s when they will have to say ‘well actually this isn’t going to work and will look at other options but because I have had pain with GCSF injections in the past they say that is a good sign as patients who get pain (its horrible i tell u - aching and flu like symptoms but hey small price to pay and I can take codeine to ease pain) usually produce plenty of stem cells so that’s a good sign!When my counts are high enough (white count has to be above 1 I think) they will test to see if there are any stem cells in my blood stream (just a normal blood sample from my line) and once they find some then they connect me up to this fancy looking machine.

I am on it for about 4 hours and it basically circulates your blood round twice and takes the stem cells out of it n puts the rest back in. The main thing is that its boring! they said they don’t know how many times I will go on the machine, depends how many stem cells they get the first time, if its not enough I go back on and so on until they have enough. I been told they can use my line to connect it and everything so that’s cool.The stem cell transplant will essentially be a holding thing until I can get the bone marrow transplant but potentially it could hold it for some time so if they can do it it will be a very positive sign. By collecting my stem cells it will enable them to give me much stronger chemo which obviously will stand more chance of getting rid of the tumor.

So that brings us up to date with the plan for the next few weeks, when I was in hospital I saw Dr. Haynes again and he explained what would happen after this so that is in the next post….