[kevinParticipant]

Hello Carolyn

You will find a lot of useful information and advice on here as myeloma seems to be a very individual disease. You will find many experiences covered and can find answers to your questions via the myeloma uk nurses or contributors to the forum. My brief history is – diagnosed 10 years ago at 48. Has returned once since then. Both courses of treatment resulted in full remission. At the moment I am still in full remission, am on no medication and have a blood test and see my consultant every 6 months.
Best wishes
Kevin

[kevinParticipant]

Hello Adelaide56,

Don’t know whether this will help as I have never been interested in the details of my myeloma. I tend to treat it as an unwelcome intrusion in my life. First diagnosed in November 2006. Had CTD followed by SCT. Had full remission for about 5 years. When seeing my consultant for my check ups all I ask is how are my bloods. When on treatment the answer was, everything going in the right direction, then when in remission all ok no signs. Really that was all I needed to know although he did go through everything. So cannot answer your question with specific numbers but remember when the it started to come back in 2012 he also did not seem too concerned. My recollection is that he wanted to see if the numbers continued to rise or remain stable. After I think about another 2 or 3 blood tests over several months the counts continued to rise slowly. When it reached a certain level, again I don’t know what that was he asked if I would like to leave it until the next test or start treatment again. I decided to start treatment again and had CDT followed by another SCT in 2013. Again have achieved full remission. My impression was that when it showed again it was very low and did not require treatment and that it may just be a blip and drop or stay at that level. As in my case it continued to rise and reach a level where treatment was required.
Hope this helps. Am quite happy to answer any other specific questions (if I can) about my experience. I’m afraid though I have taken your teams advice and don’t get hung up with numbers.
Best wishes
Regards
Kevin

[kevinParticipant]

Hello Steve
I have had 2 SCT. The first was in June 2007 in for 17 days and the second was January 2013 in for 18 days 18 days. I had CDT treatment prior to both of them. As with the CDT both my SCT had different side effects. I think when they say ‘very strong’ that refers to your body. On both occasions I had many tests to see if I was strong enough to have them. Both SCT were different in that the side effects of the second seemed worse than the first. I seem to remember that the first one did not seem too bad. Having said that they are hard at times and I think Graeme sums it up when he says they are ‘unpleasant but doable.’ One of my theories is that although I had been told what to expect of my first SCT the treatment was new to me whereas with my second I knew what to expect physically and mentally. With the CDT and SCT in 2007 I achieved 5 years full remission. I am still in full remission after the SCT in 2013 and have a blood test and see my consultant every 6 months.
Best wishes
Regards
Kevin

[kevinParticipant]

Hello Karen,
I was diagnosed in 2006 at 48. I had CDT followed by a SCT. This gave me a full remission. This lasted just over 5 years and during that time I was only taking Clodronate. It reappeared in 2012. I had another course of CDT followed by another SCT. This again resulted in full remission. Since then I have not been on any medication at all. I also now have 6 monthly blood tests and consultations. I still do most of the things I want to do and have not let it interfere with my life as far as possible.
Best wishes to you and Pete.

Kevin

[kevinParticipant]

Hello Graeme,

I have had 2 SCT now the first in 2007 which like Chris was at Kings in London as I am also from the Medway area and the second at Kings & London Bridge in 2013. Like you both were preceded with CDT. I was 49 when I had my first one. Everyone seems to have different experiences and all I could add to this is that each of my SCT was different. One ok and the other not quite as good. I was in hospital for about 2 weeks for each of them. The hardest thing that I found was trying to pass the time and the loss of appetite. The time issue was probably my fault as I am not a good patient. Although other things were different this was common to both. The care I received on both occasions was excellent. Each time I achieved a full remission. I think from memory it took a couple of months from coming out to start to get back to how I was then another couple of months to feel ok again. Fatigue was the main issue but also feeling weak. As of today I am not on any medication and see my consultant every 6 months.
Good luck and best wishes for your SCT
Regards
Kevin

[kevinParticipant]

Hello Mervyn,

Sorry the last sentence should have said ‘Each course of CTD and SCT gave me full remission.’

Best Wishes
Kevin

[kevinParticipant]

Hello Mervyn,

Best wishes for your upcoming SCT. I would echo what Rebecca has said. I have had two SCT now one in 2007 and the second in 2012. As has been said everyone is different and all I could add to that is to say that both my SCTs were different experiences. I had excellent treatment and care by all the staff on both occasions but the common factor was the boredom so would suggest anything you can do to combat this would help. Each SCT gave me full remission.
Best Wishes
Kevin

[kevinParticipant]

Good Luck and best wishes for your upcoming treatment. Just celebrating one year since my second SCT and still in full remission.
All the best
Kevin

[kevinParticipant]

Thank you Eve and Tom. Hope all has gone well with Slim. There is more choice available now than when first diagnosed and more in the pipeline so deciding the right way to go can be difficult. Logic tells me I have done the right thing – time will tell. I will this time however take up Gills idea of keeping a diary as i dont recall too many details of how I felt last time. I thought I wasnt too bad but think my good lady may have other thoughts on that.
Best wishes
Regards
Kevin

[kevinParticipant]

Best wishes and finger crossed for you Keith. I am in a very similar situation to you all be it only having had one SCT. PP 4 in Nov and now 9. Hope all goes well for you.
Best wishes
Kevin

[kevinParticipant]

Hello Janet,

I had my SCT in 2007. My last check up was in November 11. I was told then that after 4 years of remission that my count had slightly risen. Was it a blip, will it drop on its own or would it continue to rise. There was no definate answer. I asked what next and was told they would keep an eye on it and when it got to a certain level I would probaly have the same treatment I had 5 years ago. I was told it could be a year before anything needs doing. I see my Consultant in about 2 weeks after having a blood test yesterday and will find out more then. As it seems to be individualto everyone, as the others have said it is best to take advice from your team as they know you the best and can answer your questions for you.
Best wishes
Kevin

[kevinParticipant]

Hello Graham,

Similar story. Diagnosed at 48 (5 years ago) after not being able to shrug off a back problem. As you say the bone marrow biopsies are 'interesting'. I had CDT treatment followed by a bone marrow transplant. Have been in remission since then. Was told at my last consultation a level of something was slightly elevated but no treatment necessary and will just keep an eye on it. Think I have been very lucky with the success of the treatment I had and even since then there have been advances with always something better in the pipeline.
Best wishes
Kevin

[kevinParticipant]

Hello all,
My name is Kevin (aka Grumpy – I don't know why !!!!). Live in Gillingham in Kent and am 53. Diagnosed 5 years ago – CDT followed by SCT at Kings College Hospital London.
Best wishes to all
Kevin

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