A warm welcome to all those who joined us over the past months.
We are so sorry that you had to find us but you have found a supportive place where we all understand what this Stem Cell Journey is all about.
A Stem Cell Transplant journey can be a total Rollercoaster, but the group members have all been on the ride so for you, our first hand experience can be a great resource and during these challenging times you may find connecting with folks who have walked the walk very helpful.
If you have any questions or just want to talk with someone just hit the 'Start a Discussion' tab and introduce yourself to the group and remember to go to the right on the group home page and select how you want to receive email notifications when someone answers your posts.
If you have not done this, it would be really useful if you could put some information in your profile as this will help others when replying to you.
Just click on your username and then select 'Edit Profile' under the Profile Settings. If you're not sure what sort of thing to put just click on our forum names to get an idea.
Have a look through our various Macmillan Support Line Services then call them on 0808 808 00 00 to be very helpful covering Emotional Support and Practical Information. Clinical Information and Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link….. but be aware the service is VERY busy at the moment.
We are always around to help as best as we can.
Hi and welcome to our corner of the Community.
I see that you have a type of T- Cell Lymphoma..... I also had T-Cell...long story but hit my name and see my profile. Have you been told what type you have.
My team could not get me into remission so an Auto SCT was not an option for me so went straight to Allo SCT with cells from my brother.
Here is some info to help you understanding a Stem Cell Transplant using your own cells (autologous) - PDF here.
The positive is that an Auto SCT is much less dangerous than an Allo SCT so be encouraged, You have to expect the unexpected during a SCT but we can walk this with you.
Can there be challenges, well yes, but these SCT teams are at the top of their game and will get you through.
You will have what we tend to call 'The Talk' with the SCT team. It's where the team unpack what SCT would look like and obvoisly they will carefully detail ALL the possible side effects. Yes, some of these side effects can turn out to be bad, very bad and you would be giving permission to your team to take you to the point of 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 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.
Make up a list of questions and this is very important as when the Consultant says ‘have you any questions?’ the note book comes out and you say 'well, yes I have' A lot of people do freeze at this point and are overwhelmed by information. So you can go through questions one by one, making sure you take notes. If you don’t understand something you stop the Consultant and ask them to put into a form of language that you understand.
I would strongly recommend that you always have two sets of ears as the information can come thick and fast and two people can hear far more than one and its someone to sit and have a cup of coffee with after and talk through what was said, rather then rushing home and not unpacking it.
Once you start to get your head round this you may want to ‘start a discussion’ as this will keep you support in one place.
Keep asking your questions as we are here to help you.
Hi again , I had to zoom in to a meeting so did want to come back with some more info.
Good question to ask at this meeting is what type Conditioning (Chemo and/or Radiotherapy) will they use to take down your immune system as there are lots so we can hopefully help you on that one.
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 towards?
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.
Pre-SCT 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.
You may need a Bone ,arrow Biopsy for before and after comparison.
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.
Hi , sorry to hear your news and I have to say that reading your post will sound so familiar to many others and for me, has transported me back to my time in hospital post cell infusion.
First, you are only 5 days post cell infusion so your immune system is just not in a place to fight anything - it’s just starting to wake up and will take a little more time to be able to help fight all the stuff that is attacking your body.
Your team are doing what is needed, honestly they will have seen all this before, prodding your tummy is normal and yes your skin can indeed get very angry and itchy.
Keep going with the mouth washes, my mouth problems started very soon after cell infusion but did not amount to much so let’s hope you can keep on top of this.
Is this as bad as it gets...who knows? But as I landed up in ICU the day I had my cell infusion you are well ahead of where I was on the road to recovery.
Take each day as it comes, the improvements will come but will unfortunately take time.
((hugs))
