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Thursday, 22 December 2011

It didn’t work!

Well I had some bad news on Monday, it looks like my second transplant didn’t work! The transplant itself, seems to have gone OK, at least so far. I have started to experience the Graft V Host disease symptoms that they want to see such as the skin peeling on my hands and now as well as my feet. I woke up on Tuesday morning and the skin virtually just fell off my toes and souls of fee. It is very similar to sun burn pealing. They are monitoring my levels very carefully to make sure that they balance my immune system with ciclosporin and steroids at the moment. I will still have to be very careful that it doesn’t take over too much, so my body doesn’t reject it altogether, but so far so good.

The point of having the transplant though was to either reduce the para-protein or at the very least stop it in it’s tracks from climbing further. I knew from the start that my levels were unusually high to even have the transplant, they like them to be as low as possible. If you recall I started on the Lenalidomide for about three weeks prior to transplant to see if that halted it as the Velcade I was on had stopped having any effect and it was already climbing prior to going if of the SCT. As mentioned I was told on Monday that they had already started to climb. Something that shouldn’t happen if the the SCT had worked on the para-protein.

This puts me in a bit of a difficult position as to what to do next. They can’t just wait for my transplant to process to completed as the the para-protein could climb even higher and go completely out of control. If they start to treat the myeloma (para-protein) whilst I’m still going through the process of healing from the SCT it could effect the recovery in some way.

The plan at the moment is that the SCT team are going to discuss with the Myeloma team to see if they can come up with some kind of solution to try. It may involve going on the Lenalidomide or just maybe pulsing some Dexamethasone to see if they can hold it off for a few months/weeks.

There is no guarantee though that anything they try may work. I’m in unknown waters at the the moment and don’t know even after the SCT had taken completely and they tried me on the Lenalidomide that it will work at all on me. It may do or may not.

The last few days have been quite emotional, having to tell the family that yet again it hasn’t worked and of course people are feeling guilty that it is somehow there fault (i.e. my brother) but of course it isn’t in any way. The transplant has worked but because of the Myeloma being so aggressive and progressive in my body already it just hasn’t worked on the Myeloma, which is nobodies fault!

The prognosis now is unknown, but I’m going to try and stay as positive as I can. It’s been difficult, especially while on the the steroids, as they make me even more emotional than usual.

I do feel better after telling the family and everyone having a bit of a cry. My plans having changed and my usual statement stand's ‘I’m not dead yet’

It’s just another hurdle that I will have to get over and find out what the next step is to try to extend my life as much as possible and then deal with that.

I was at the Royal today to have bloods checked as usual and going to have a couple of units of blood tomorrow (actually today as I’m typing this – Thursday) at Chester and then back to the Royal on Friday for another check prior to Christmas. Hopefully I won’t have any issues and Charito and I can have a nice Christmas day together, with my body fully charged up etc.


  1. THinking of you and sending a warm hug and healing prayer across the ocean.

  2. Our thoughts our with you sean *hugs*

  3. That's s**t news to be given Sean, especially just before Christmas. If I was you I'd ask for my money back!
    Here's hoping you have a great Christmas. X x

  4. Hi Sean, Horrible news - I hope and pray that you and Charito can have some special time together at Christmas. Paula may or may not be home for Christmas Day. At the present time following a visit from Prof Chu it appears unlikely. That Girl is a total inspiration to me - she is so strong and she will let nothing knock her down. On Sunday she had me in pleats telling me a story about a boy with a chinchilla and her mouth looked excrutiatingly sore but would she stop talking - no. Sending you my love and best wishes - I will keep you updated with P if you so wish as I know you and her are good buddies. Love G xx

  5. YOU HAVE BEEN A BRICK SEAN ALL THE WAY THROUGH YOUR TREATMENT. DONT GIVE UP EVEN NOW There's still a RAY OF HOPE. Tell Charito not to put her self out for the selfish ones she is far more important. lots of love to you both and keep smiling not easy I know but you have done it so far. CJ xxxxxx

  6. Hi Sean. I like your attitude - you are still alive and kicking, if not actually "fighting fit", so make the most of your shot of the red stuff and enjoy the holiday season. Christmas hugs to both of you,
    from Roo and FL.

  7. And you still thought to bring me rice pudding. I would have 'lol'ed but I didn't want to start coughing and then throw up!

    My sister in law, Gill, who commented above, told me that things weren't too good. Its just as well B was here to give me a hug when we read your news. We're so disappointed for you both but both agreed you looked particularly well when we saw you when were taking Revlimid so who knows. xx

  8. Well, that is disappointing to say the least.
    I'm sorry about the news and the timing. Sean, over here stateside, they give patients
    revlimid(lenolidomide) when they've had allos and the numbers are not going down. It is an immunomodulating drug and can help the new immune system to fight the MM. Prayers going out to you all. xx

  9. Well, I am NOT going to stop intending that there is a solution for you and that your numbers are turning around, for the highest and best good of all concerned, so be it and SO IT IS! Whoooooooo! And since you are NDY, we will continue to cheer you onward... maybe the GVHD will knock it back??? Anyhow, thinking of you and Charito, "Feliz Navidad," and hugs...