A good day of chatting and advice

FormerMember
FormerMember
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Hi everyone Cornishman here again, I just wanted  to update you all on my day today Friday, after my post this morning at 3am because I couldn't sleep because of the steroids and also worrying about after the chemotherapy the stem cell transplant.

I force myself to have breakfast of ready brek and some juice I did myself, which I eat but didn't enjoy but I keep telling myself to eat to help my body fight my cancer,I then went up to Truro for my walk with other cancer people, just a gentle walk and talk and then coffee in the park which was great fun with good people.

I then after the walk made the effort to go to the cove to have a chat with them,for support and help with has help me to cope with what I'm dealing with, as I'm guessing you all know about from your own journey.

I was honest about not coping with what I'm dealing with the tiredness, the no interest in food and not know much about the stem cell transplant, so the out come was to see a dietary person about help with eating and a suggestion of a food delivered company which I've put a order straight  away, so hopefully this will help.

I also spoke to another lady who know a little more about the stem cell transplant and, explained it to me in a little more detail,which to be honestly scare my a lot but,as I've mentioned I'm see the nurse who is looking after me in 2 weeks time to go through everything with me and some test also, so I'm looking forward to that and,also I would like to thank Highlander for the suggestion of taking a note pad with question that I've already got ready.

So I'm feeling slightly better than I was early today but, I'm still wide awake after only having 2 hours sleep last night, so another long night a head

Thank you all again for you support advice and just helping my deal with my cancer

Cornishman

  • Good morning , I have this picture of you and your friends standing down the harbour in Truro singing old sea shanties ;)

    Great you are getting out and about and talking with people who can help you on this journey. The fact that you are coming on to these forums and talking will help a lot.

    Stem Cell Transplant sounds scary in the early days when you are getting your head round it but it is a very cleaver way of get folks into long term remission.

    This is my simple guide to Stem Cell Transplant:

    The idea behind SCT is to give you an all new Immune System.

    An Autologous SCT (Auto) involves getting the patient into a condition that no cancer is evident this is normally done by using very strong chemo then the patients Stem Cells will be harvested.

    The patient will often have a week of injections (once a day) to help the Bone Marrow make lots of Stem Cells.

    Then on the day of harvesting the cells two lines are put into the arms - one out, one in. Its sort of like giving blood - the blood runs into a very clever machine that brrrrs the blood round and picks out what are called undifferentiated cells (these Stem Cells have not been given a job so this is before they turn into Red or White blood cells etc) and the blood returns through the line back into the blood stream.

    The machine can pick out millions of cells over a 4-5 hours process. The harvest is on the whole painless, just a lot of sitting around.

    The Stem Cells are then stored until it's time to use them. The method is called cryopreservation: it freezes stem cells at temperatures below -150oC, by immersing them in nitrogen vapour. When required, they are defrosted in a water bath and are put back into the body through a central line.

    An Auto then requires what we call Conditioning to happen. This is done to take down the immune system completely. This is usually done using some more Chemo - but its only for a few days.

    Once the Immune System is taken down they give the harvested Stem Cells back just like getting a blood transfusion.

    The Stem Cells then go to the job centre in the Bone Marrow and ask for a job. This is the point where they become differentiated cells like Red and White blood cells...... and the all ’New You” starts as the body start to reboot the immune system and over time the blood counts come back up. Its all very cleaver, very science fiction but very do-able.

    Due to the very specialised nature of a SCT it is often done in a dedicated SCT unit. It a very clean environment (Ward) in a hospital, you often get your own on-suite room and yes you do get visitors (some people think they have to live in a bubble) as long as every one is healthy its no problem but some units will have rules about little children.

    Remember you don’t have an immune system to fight bugs during this time so safety first, but SCT teams are very good at keeping everything under control until your new immune system kids back in. You will be an inpatient for some of the time but this all depends on how fast the ’New You’ starts to grow.

    An Allogeneic (Allo) is the other main type of SCT. Often used due to how a persons condition has developed or their team can’t get them in to a position to harvest their own Stem Cells.

    The aim is to get them into a position where there is no cancer active but for me that was never the case so we went for it and riled the dice.

    An Allo SCT also requires a few days conditioning and then you receive Stem Cells harvested from a matched donor. A person from your family or from the world wide Stem Cell Donor Register.

    An Allo is often seen as the harder of the two SCT treatments as you is open to GvHD (Graft verses Host Disease) This actually happens in all types of organ transplants like heart and lungs.

    GvHD is where your body does it's best to reject the new Stem Cells, they see the new cells like an infection so try’s to kill them off but during the first 109 days or so you are given drugs that will stop your body trying to kill the new cells. But eventually these drugs are reduced as the blood tests show the new cells have grown in number and are now able to take control on their own.

    Thus is when the real battle starts for the new cells to take 100% control of your body and by doing this the cancer is overwritten and in remission or even cured.

    Some Auto and Allo SCT treatment plans may also require Radiotherapy.

    I would say that the fatigue and infection risk following a SCT is much higher than that going through your regular chemo but that could just be me.

    An interesting thing that happens during an Allo SCT is your blood type my change due to match the blood type of your donor and you will have to get most of your childhood vaccinations again as the process kills them off!!  

    You will have lots of questions so you will find me and others on the Stem cell transplants for blood cancers Forum have walked this walk so do understand.

    I always say that you cant do anything to control the actual medical treatments but you can make a difference to how you get through your journey, so gathering clear information can help you fight the battle between your ears.

    Have a great Saturday,

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • FormerMember
    FormerMember in reply to Thehighlander

    Good morning Highlander thank you so much for your reply to my message, yet again you've help me out so much with you excellent and clear explanations, it's help come to term's with everything that is going to happen to me.

    As I mentioned before I had a good day chatting to the ladies at the cove and also my younger sister who I've ask to be in the appointment about the stem cell transplant on speaker phone to have a extra pair of ears listening to the nurses explain about it,and also I've a note pad with questions to ask,as you suggested.

    It is very Scarry for me a the moment but,with your great help it's becoming easy to understand everything.

    Thank you again Highlander and you have a great weekend

    Cornishman