Hi everyone
I am 27 days after finishing a 5 day Flag ida course and still no sign of any neutrophils.
After chemo last year my counts always started to rise after about 21 days.
Am I being a bit impatient or is this normal ?
Mark
Hi Mark, this is good news and full steam ahead.
This would be a good time to consider starting a thread in the Stem Cell Transplant (SCT) Forum as you will connect with folks who have been through or are going through SCT. The SCT Journey is full of twists and turns but between us one of us will have experienced any of the issues you may come up against.
When you meet with your SCT Team you will have what we tend to call 'The Talk' with the SCT team?
It's where the team unpack what they are going to do and carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you will be giving permission to your team to take you to the point of death, being open to very bad infections and side effects, then bring you back with an ‘All New You’ it all sounds very scary but it is ALL very do-able.
The talk is not there to scare you (but for some it does). But they do need to be honest and as best as they can tell you what a SCT journey is like and they do have to cover their backs as well.
I was given a 5 page connect form away detailing everything they had said and I I was willing to go ahed I had to sign it and return it and this started the process.
Do try and get as much details about the conditioning that is going to be used to kill your immune system as one of the folks on the SCT Forum will have been through it so can help with first hand expereance.
Your Transplant Co-ordinator should be at the meeting, if not ask to meet them or at least their contact details as they will become your all new best friend. Ask to see the SCT unit as this can help turn the stress levels down as it is just another hospital ward... but a very clean ward....... but you would think all hospitals would be like this ;)
You could ask about the time table they are working to?
If you have not had your pre-SCT medical tests (list below) ask if you have to have any tests done before the process starts.
..... and make sure you have someone with you as they can pick up lots of stuff that you will miss and they will also understand why you are apprehensive......... and take a note book to help get some understanding of what they are saying.
Pre - SCT Medical Tests:
An electrocardiograph (ECG) to check your heart's rhythm and electrical activity
An echocardiogram scan used to look at your heart and nearby blood vessels
An X-Ray or CT to check the condition of your organs such as the lungs and liver
A very detailed Lung Function test to check your lung function and lung capacity
A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.
Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working. For an Allo SCT data will be collected to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.
You may have a meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for.
You may also meet with a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work.
Yes Mark, it can be scary but the more you prepare yourself the less intense it can be.
The Professor that did my first ‘talk’ actually had a rather unfortunate squint so it did lighten the whole thing. He was looking at his computer screen with one eye but the other was looking at me - hard not to keep looking at his eyes LOL
He was very blunt, very clear and got to the point very quickly “An Allo Stem Cell Transplant does require us to kill your immune system rather brutally to the point that a very small infection making contact with you could be fatal.... but we are good at not letting this happen”......... “oh thank you” I thought LOL
He did ask if we wanted to be given the survival statistics but we declined his offer. We had no option than go on the rollercoaster so why make it complicated with clogging our minds with statistics that actually made no difference in real terms.
Our Transplant Co-ordinator was great and we had time with her after the ‘talk’ as she took the 18 blood tests!! then showed us round the unit.
She was impressed that we refused to hear the statistics as in her experience this often were the ‘one and only’ thing that people go away with rather than the ultimate goal of the SCT process.
When I want back for my second Allo SCT they did not even do the talk - “you know what this is all about and this one has to work” then handed me the consent form to sign and that was that and the rest is history as they say.
