3 Years on…

This topic contains 14 replies, has 7 voices, and was last updated by  greg777 6 years, 11 months ago.

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  • 27th August 2016 at 12:20 pm #129281

    willjames2
    Participant

    Hi Folks,

    Its been a while since I have visited the site but just thought I’d share my thoughts.

    Today is 3 years exactly to the day, since being diagnosed at the age of 41 with MM. I wont lie, my world collapsed that day, however my family and friends got me through and for that I feel eternally grateful.

    I feel especially lucky because after initial CTD then Auto, then RIC Allo in the first 12 months of treatment I am still in remission (although I’m probably tempting fate by this posting!). I work full time and live a normal life, I have no GVHD (or none that I can physically see) although I have do have occasional issues with my eyes when tired (which my be a sort of GVHD?)

    I attend clinic at the fantastic ward 44 (Manchester Royal) once a month for Zometa and every two months for check up and bloods. I must admit, as time goes by, I do get anxious when I have blood tests waiting for the fateful day when I may get bad news and thank my lucky stars every day that I am well.

    I know someone is watching over me.

    So in summary, all’s good with me and the reason I post this, is so that others who are newly diagnosed or who think that all may be lost…its not. Be strong on the bad days, be thankful for the good days and listen to your consultant. Also speak to the wonderful people on this forum who have a raft of knowledge.

    Onwards and Upwards

    Kind Regards

    Scott

    P.s If anyone wants to talk or ask questions about my treatment etc then please don’t hesitate to get in touch.

    29th August 2016 at 1:06 pm #129293

    Michele
    Participant

    That’s really good to hear Scott and I always think positive posts are very important on a site like this.

    If you want more good news, I passed the 5 year marker-post since diagnosis in May and after the first horrendous year of CTD and SCT, my life has never been better. Full remission and drug free with an appointment with my specialist every 6 months.

    Enjoy every day and do as much as you can whilst you can!
    : ))

    29th August 2016 at 2:11 pm #129294

    willjames2
    Participant

    Michele,

    Thanks for the reply.

    5 years…that’s awesome!

    I know there are a few with lengthy remissions and they must be celebrated, if only to give hope and comfort to people who are not that far down the road and are uncertain for the future.

    Keep fighting the good fight!

    Kind Regards

    Scott

    30th August 2016 at 12:28 pm #129299

    Ang287
    Participant

    Hi Scott, I remember you from the early days. My husband was on Ward 44 too and diagnosed 3 months before you. He too is still in full remission and on Myeloma XI trial and taking Revlamid and Vorinostat as maintenance. He is now back at the Royal Oldham Hospital for treatment after his 100 days post transplant. You are doing brilliantly if back at work full time. My husband is 58 and I am glad that he didn’t go back to work as he had a very stressful job. He now goes to art class and does other things that he enjoys and life is a lot better than it was back in 2013 when he had horrendous pain in his back and fractures in his spine. Lets hope for lots more years of remission! We are off to Puerto Rico on Sunday. Now he is no longer teaching we can go away in term time! Got to look at the positives.

    30th August 2016 at 6:09 pm #129310

    willjames2
    Participant

    Angela,

    Great to hear your hubby is doing so well and its great that he can chill out and enjoy life. Good luck on the Holiday, sounds fantastic!

    Kind Regards

    Scott

    3rd September 2016 at 4:54 pm #129348

    rebeccaR
    Participant

    Hi Scott, great news and am sure with your allo you have plenty more remission free years ahead..it’s always nice to have updates as you often wonder how people are faring and it’s especially nice to hear good news. All good news greatfully received.

    Rebecca

    14th October 2016 at 5:44 pm #130064

    dean
    Participant

    Hi.

    Just wondering if anyone out there has had a allogeneic transplant?  My Doctors are thinking of doing a allogeneic transplant shortly after my SCT coming up this November or waiting if i relapse. There still deciding.  I have heard it’s better to do Allogeneic transplant early when in remission but then I’ve also heard of people doing it later and it has worked out still well. Any tips would be great thanks Dean

    17th October 2016 at 9:13 am #130073

    greg777
    Participant

    Hi Dean,

    I had an autologous SCT in October 2015, followed by a reduced intensity allogeneic SCT in February 2016. Like you, I was told it was better to do the allo-SCT as early as possible. This was on the basis that you are younger and your donor is younger, and MM has had less time to do its magic tricks, which was one of the reasons that I decided to go ahead with it.

    But I think it is a very individual decision, and something that you should take a lot of time over. There is so much I could tell you about my experiences over the last 12 months, but it is difficult to know what would be most useful – I’d be happy to answer any specific questions at all.

    All the best,

    Greg

    17th October 2016 at 11:13 am #130083

    dean
    Participant

    Hi Greg

    Thanks to replying.

    I do have a few things to ask you if possible. Is it possible to call you or email you? Not sure how we give our contact details out maybe in the inbox? If you don’t want to no worries I will understand.  Thanks Dean

    17th October 2016 at 3:15 pm #130086

    greg777
    Participant

    Hi Dean,

    No problem – greg_777@Hotmail.co.uk

    Cheers

    Greg

    18th October 2016 at 4:41 pm #130112

    rebeccaR
    Participant

    Hi Dean, If available to you, I believe expert opinion would concur to do it as early as possible. I believe if you ring the helpline they can put you in touch with a “peer” who has undergone the process and you can call and talk to them and they can be used as an ear/guide throughout the process. I believe they have people trained/available for SCTs also but would certainly look into it for the allo. It sounds like a big leap but then you have the added incentive of potentially a much better outcome. Had I been fit enough (kidneys exclude me) I would have took a giant leap of faith with an allo…but then that’s easier said when I know I do not have that decision to make! Good luck with it all.

    Rebecca

    18th October 2016 at 5:45 pm #130114

    willjames2
    Participant

    Hi Dean,

    I’ve too have had tandem SCT. Auto then Ric Allo within 6 months. If you want to discuss then please email me on scott.mckenzie2@btinternet.com

    I’ll then give you my number and we can chat whenever suits you.

    Kind Regards

    Scott

    18th October 2016 at 7:12 pm #130116

    dean
    Participant

    Thank you Scott will drop you a email very soon.

    Thanks again Rebecca.                             I have personally decided to go for it early ( my wife is worried & wants maybe to put on hold for later) but I feel for me & for the kids this is the best time. Doctors still haven’t decided yet to go now or later but I think evidence shows if in CR which touch wood I still am it’s the best outcome plus I want to do this on my terms not the myeloma’s. Big decisions I just hope I get the green light. Hope all is going well your end…

    26th May 2017 at 10:01 am #133560

    loobs72
    Participant

    Hi

    My husband is having his SCT on Thursday next week at Ward 44 of Manchester Royal Infirmary.  He had been offered to do s tandem mini allo transplant 3 months after this one. We are finding it really difficult to make the decision.  Richard is 48.

    Just wondered if anyone could share their experience of the procedure, why they made the decision for it, was donor related, etc.

    Thank you so much.

    Lynn

    • This reply was modified 6 years, 11 months ago by  loobs72.
    26th May 2017 at 7:05 pm #133568

    greg777
    Participant

    Hi Lynn,

    I did the tandem transplant (auto in Oct 2015 and mini-allo in Feb 2016). I am as well now as I would ever hope to be. However, there is no way of telling whether I would have felt like this anyway without the allo and the journey to get here was horrible and dangerous at times (feel free to read some of my older posts when I was in the middle of it). I decided to do it because at 36 I couldn’t get my head around the disease being incurable so I figured I needed to whack it as hard as I could in the hope it would give me the best possible chance. In my experience, the actual procedure is pretty much the same between the two but the risks with an allo are a lot greater and the recovery time was a lot longer so it is a decision you should definitely take your time over to make sure you are as happy as you can be with whatever you decide. Please ask any questions you might have, I’d be very happy to help.

    All the best,

    Greg

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