@milliehamilton 

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milliehamilton

MS Star Trial or Infusions?

Hi I am having a really hard time deciding what to do with my treatment - can anyone share their experiences? A main question too is how do I deal with the guilt of choose between treatments (guilt of maybe I should have chosen x, or y etc..) I am currently in the process of enrolling on the stem cell trial (final assessments taking place on the 19th of December, randomisation on 2nd January) but I’m struggling with knowing whether I should continue or not (range of reasons, top reason is the fertility impacts and the range of side effects!) My other option is to begin Ocrevus at the start of January. I worry that if I choose Ocrevus, I’m going to live with the regret forever for if my MS develops in the future. Equally, I’m worried if I choose the trial, I am simply not strong enough to get myself through that & deal with all the horrible side effects. It feels like a double ended sword making these decisions!! I would be extremely grateful for anyone’s experiences or thoughts - making decisions like these feel incredibly hard and lonely! Thank you all for reading 🤍
@tworamona

Hi @milliehamilton, I think it's a huge benefit to be part of a trial if you're able - you'll be monitored very closely (no doubt more closely than if you weren't part of a trial) and I imagine that in terms of infertility risks, if you were to be selected for the HSCT route, they would offer you the option of banking your eggs pre-treatment, etc. I understand your worry - I had the option of waiting for STAR-MS to become available at my hospital (Salford Royal) or escalating to Kesimpta. My neurologist encouraged me to escalate now rather than waiting (I've been on Kesimpta for a year and I don't think the trial is in place at Salford yet) but now I'm not eligible for the trial and am looking into options for accessing HSCT privately. I think considering that you're still medically very young and if you have no other health conditions, the stats suggest you are likely to withstand HSCT very well. Though you might not be selected for HSCT in any case, it's worth reading up on it to understand how others have responded to the risks and side effects. Try https://www.aimscharity.org/ if you haven't already - you can also book in peer support calls here with people who have experience of HSCT. Mainly though I think go with your gut. All of these decisions are a big gamble and you don't know how things will work out whichever route you choose, you just have to feel certain in yourself that you're doing the best for yourself that you can at this time... Good luck!

@AndreaG

@milliehamilton Difficult, a lot of "what if's" appearing in your summary. No-one knows what the future holds, so you can only make your choice based on the information you have now. My suggestion would be to: Settle down and write up a plan - 2, 5, 10, 20 years and where you would like to be, ignoring your MS. Draw up a sheet with the drugs and HSCT down one side, then two columns, one for Pros and one for Cons. Then list the good and bad of each drug, from your perspective. Then compare each drug on offer and the HSCT and see which matches your plan for the future. Which will offer you the opportunity to have the quality of life that you currently have now? Can anyone give you a prognosis of where your MS may be in 10 or 20 years time? Side effects - as scary as they are, the doctors have to inform you, though these are rare and if you do suffer from them, you will be taken off the DMT and put on another one. You don't get a choice with the trial as it is random, so the doctors don't get to choose. If you get on the HSCT part of the trial, then there is no going back as it involves chemo, and everything that goes with that. If you get put on one of the DMTs then you have a choice. And there is a better chance of slowing down your MS because the DMTs on offer are super effective. Talk to the people running the trial with your list and see what they can suggest. If in doubt, go for Ocrevus and come off the trial. You can always go on a different trial, or opt for HSCT (if that's what you want) in the future.