adriwest1

  • I just want to wish everyone the very best for 2018 and keep strong. I’m not one for this usually but I find myself realising that we need to remind ourselves that a new year means a another year of survival and hopefully better treatments coming down the line- Adrian

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    You have to believe me that it does get easier- I think you begin to get used to it, if he’s like me you just want to be normal again and have the confidence to do what you want to without people thinking/looking at you differently. This does take time and guts to get on with life at his stage. I got very low at times but these days do pass and a…[Read more]

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    It a long slog- I was diagnosed in June 2016 and only just had my SCT  the phrases ‘everybody is different’ and ‘your on a journey’ didn’t really help much. I think you just have to take it as is comes and focus on what’s next!! and try not to let your mind run away with itself.

    Adrian.

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    Hi Sabs,  Wish I could help on this one but I simply  don’t know the answer. Did he have an MRI scan when he was first diagnosed? From what I undwrstand if the M spike has been reduced (which it clearly has) then this should stop further bone damage.

    Regards

    Adrian.

     

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    Hi Sabs they usually put them back 24 hrs after chemo, I know what you mean about not making sense!! but I think the chemo is so strong it kills nearly all your cells good/bad and the stem then graft behind this, side effects really kicked on around day 7 for me. After the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular,…[Read more]

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    Hi Sabs, I am 48 years old. I went in on Friday 22nd Sept at 6pm, on Saturday I had the <span style=”color: rgba(0, 0, 0, 0.870588); font-family: Roboto-Regular, HelveticaNeue, Arial, sans-serif; line-height: 20px; -webkit-tap-highlight-color: rgba(0, 0, 0, 0);”>Melphalan which   took about one hour, because of the weekend I had to wait until M…[Read more]

  • adriwest1 replied to the topic SCT in the forum Under 50s 3 years, 11 months ago

    Thanks Greg, It truly is an experience! I can only tip my hat to you with what you went though.

    Plan to lie low for a couple of weeks and potter around.

    So grateful for this site and Myeloma UK as without them I’m not sure I would have coped very well. Next I plan to raise more money (around £1200) since March. and getting friends and family to…[Read more]

  • adriwest1 started the topic SCT in the forum Under 50s 3 years, 11 months ago

    hi everybody, well I just got back from my SCT. So relieved to have done it and not nearly as bad as I expected. If you have one coming up then good luck and you CAN do it- happy to answer any questions. Thanks Adrian

  • Hi, I am currently in Southampton Gen and they are tops- day 4 on my SCT. 

    Dr J is in my option is the best!

     

  • Just got in for SCT, two doors down from you Pete.

  • Ok thanks for the info Pete, I think I’m going in tomorrow but will need to wait until the morning to be sure. Is this your 1st day in? Thanks and keep in touch adrian.

     

  • Hi Pete good to hear from you, think your ahead of me- let me know if anything happens as I will.

  • Thanks Susie I guess the temptation  is to want to go home asap, I already think 14 days and home would be good- this really does play with your mind.

    Take care

    Adrian

  • Hi Susie, going to have my SCT in Southampton. I will keep you posted and any tips you have would really be appreciated.

    Hope you continue to improve on a daily basis.

    Adrian.

  • Hi Susie- well I did it, I never thought I would get this far with all the treatment. I’m now waiting on a bed for the main event. How are you feeling now?

    Thankyou for asking by the way it means a lot

    adrian

  • Thank you hoth for your kind words, I needed that. Will need your advise again if ok as stem cell looms as soon as the line is on, they said its just a bed when it comes up- this just doesn’t feel real sometimes. Thank you again!!

    adrian.

  • Thanks Greg, I othen have a look on this site as I don’t use facebook for advice- don’t want to sound like a moaner but I am finding this so hard. I hate blood/ needles and the constant trips to the hospital.

    We are really lucky to have this site to express our feelings as its feels a lonely place sometimes as only we know how we feel, I find…[Read more]

  • Hi, having my Hickman Line put in this Tuesday any advise would really be appreciated, just feel no nervous.

    thank you

    Adrian

  • Hi all, what’s shocking is that you can/do feel helpless in what drugs we can access. From what I understand NICE are priced focused even at the expence of the patient, the only blessing is that we seem to get the best drugs further down the line. From my prospective I want the best treatment and some of the new drugs offer real hope but the time…[Read more]

  • Hi Teresa, I was taking it first thing in the morning, as soon as I woke up. Then waited min of one hour before eating anything, there were a few times I felt sick but geneally I found the drug was less toxic than the previous ones I had been on. Had my biopsy yesterday and fully recommend gas and air, had three so far and this was by far the…[Read more]

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