@ChiMum 

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ChiMum

aHSCT Trial

I am newly diagnosed as of December last year, and my MS Nurses gave me the option of a stem cell trial. 50% of the trial will get the stem cell and 50% will get 50 high effect drugs. It is completely random, which one you get, but if you get the drugs and you continue to you have relapses, then you are offered the stem cell transplant. I am meeting with the trial consultant and the person in charge of transfusions next Wednesday morning, and then I will have to have a series of tests such as blood tests, x-rays, lumbar puncture, heart ECG and a lung capacity test. It involves about a month of to-ing and fro-ing to the hospital as an outpatient and a weekend stay, then once I have chemotherapy I will be in hospital for 4-5 weeks. After the chemo and the 4 or 5 weeks isolation in hospital, I can go home and have to go back to the hospital once a week for two months for check ups, blood work etc and be on antibiotics for a year. I’m very scared about the chemo and heartbroken about being away from my husband and kids for a month….but this could be as close to a cure as I’ll get. I’ve told my parents are my best friend and my husband has told his boss, but other than that I’m not telling anyone until the treatment starts because I know people will try and talk me out of it and it is my decision to make. I haven’t officially said yes yet. I think I will say yes next Wednesday once I’ve asked loads more questions because I felt it is an amazing opportunity, it just means potentially that I will be really poorly for two months. I have emetophobia, which is a really severe phobia of vomiting. So chemo is going to be hard, because I’ll probably throw up a lot and I’m sad about potentially losing my hair….but MS is scary too. The future is so unknown. At least this way I can take a bit of control and maybe stop the flare ups in the track before they do too much damage to my body and my mindset. Apologies in advance if I had to come and invent from time to time, I’ve just got no one in my life that I can tell. My friends will try and talk me out of it. My parents are supporting me but they are unhappy about my choice, and my husband is pretty devastated, so I don’t want to put him in it too much pressure. After my first round of tests, if I am deemed healthy enough to have the stem, cell treatment treatment will start in 2 to 3 months. Wish me luck 😂
@Runningonempty

Good luck hun and it’s ur body ur choice . We all have a life and it’s up to us as individuals ‘how we live it’ I think ur very brave as I know underneath it all u must be shit scared but feel that’s it’s a chance worth taking. Try and breath through it all & try to keep a balanced perspective even if that means doing lots of pros & cons lists so u can see it on paper and it’s not just going round & round in ur head. On a slightly more shallow note personally I think u have a lovely face and could carry off the hairless look ☺️🙃😁 and there are lots of meds to help with nausea so remember u r stronger & braver than u think or know and remember uve got the counciling to help too so chin up chicken & keep fighting Take care of u & sending u much support ✊💪🤞👍

@ChiMum

Thank you @Runningonempty your support means the world to me. I am shit scared. There is a one percent chance of dying :( but it could mean that I don’t have a flare up again for ages. I had two big flareups last August and then last November. The November flareup put me in hospital for a week. I haven’t fully recovered from either and still struggle with physical symptoms that first started in flareup so I’m very scared about what will happen if I continue to get them.

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