Kevin Kirk

  • kevin posted an update 7 months, 1 week ago

    Hello
    I was diagnosed when I was 48 (now 63 – but still 25 in my head). Sorry I don’t think there is anything I have done that I know was definitely medically positive. On a personal level I am very positive about the future regarding me personally and new and future treatments. Before diagnosis I had never heard of myeloma and now only know about…[Read more]

  • kevin posted a new activity comment 7 months, 1 week ago

    Hello

    I have only had 2 SCT, first in 2007 and the second in 2013. Each of those with prior treatments gave me about 4 ½ years full remission. I am not sure if you get offered a 3rd SCT. My last relapse was in 2017 which I was treated with carfilzomib and dex and my treatment and course of maintenance treatment finished in Dec 2019. I am…[Read more]

    • Hello Kevin,
      Thanks indeed for clarification.
      I’m now 9 months post (ASCT). This is my first SCT. I was diagnosed when I was 42 years old, now 46. I have been on lenalidomide 10 mg( maintenance medication). So far everything seems ok except my WBC is slightly bellow 3000 (2600) due to lenalidomide.
      I know very well that every myeloma patient is d…[Read more]

  • kevin replied to the topic Kyprolis (Carfilzomib) in the forum Treatment 3 years, 10 months ago

    Hello Scott

    I was 48 when diagnosed and just turned 60 last week. Work – long story – Before diagnosis had planned to retire early but loved job. Then diagnosis was unsure of prognosis, also it had damaged my spine. worked in hospital and lifting involved in job so weighed everything up and decided to retire. Company and management were…[Read more]

  • kevin replied to the topic Kyprolis (Carfilzomib) in the forum Treatment 3 years, 10 months ago

    Hello Scott

    I am being treated with carfilzomib and am in the middle of my 3rd cycle. I believe it is a targeted medication instead of a general one. This is my second relapse with my first 2 treatments being CDT followed by a SCT. I was first diagnosed in 2006. They give it to me along with dexamethasone. I also have a monthly infusion of…[Read more]

  • Have only a months experience of carfilzomib. Briefly I was diagnosed on 2006. Cdt followed by SCT. 5 years remission. 2013 CDT followed by SCT. – 5 years remission. Started to return 2017 and started treatment in January 2018. Carfilzomib and dexamethasone. My experience is that I had different side effects from my first 2 treatments even though…[Read more]

  • Hello Leza
    I had my 1st SCT back in 2007 aged 49 and was in hospital for 17 days. I had my 2nd SCT in 2013 and was in hospital for 18 days. Both courses of treatment and the SCTs gave me full remission. As you say everyone is different but the doctors need to be sure you are well enough and able enough to cope with the big wide world before they…[Read more]

  • Hello Susie,

    I have had 2 SCT now and would certainly agree with Greg. 6 weeks is certainly quite early especially when you think of what your body and mind has been through. Not only the SCT but also the treatment before it, On both occasions it was around about 3 months before I felt I was over it but then again a little while longer before I…[Read more]

  • Hello

    I was first diagnosed in 2006. I have had 2 courses of CTD and 2 sct. On both occasions I was asked if I wanted to have the SCT and each time asked the advice of my consultant who each time thought it was the way to go. All I can say is that both courses of treatment and the sct gave me about 4 1/2 years of full remission. Regarding the…[Read more]

  • kevin replied to the topic To start VMP in the forum Treatment 4 years, 7 months ago

    Hello Susie,

    Have not had these combinations of drugs as a course of treatment but did have high dose melphalan for my SCT’s. All I would say is that I had the same treatment both times which was CDT followed by a SC. Both gave me a full remission for about 4 1/2 years but each time I was affected differently with reference to the side effects.…[Read more]

  • kevin replied to the topic new approved drugs in the forum Newcomers 4 years, 7 months ago

    I had my second SCT about 4 1/2 years ago. I had ctd when first diagnosed and because I achieved a good result I had ctd the second time. Although the side effects were different I achieved another good result. Sorry I cant remember at what paraprotein level I started treatment at my first relapse but I think this does depend on you consultant. My…[Read more]

  • kevin replied to the topic Just been diagnosed!! in the forum Under 50s 4 years, 7 months ago

    Hello Adrian

    I have had two SCT and from my recollection I had a dose of chemo (melphalin I think) on both occasions about a week before the harvest followed by injections to encourage new stem cell growth. This was done as an out patient. On admission to hospital I was given another dose of chemo before having the harvested cells implanted/ As…[Read more]

  • kevin replied to the topic New to the Forum in the forum Newcomers 4 years, 8 months ago

    Hello Teresa,
    I was diagnosed in 2006 and have had 2 courses of treatment and 2 SCT since then and both of which gave me about 4 years of full remission. I am now 59 and it has just started to return. I was also very positive and found this helped and am sure the treatment I will receive this time will work. They say that although not curable it…[Read more]

  • kevin replied to the topic VTD & SCT Time scale in the forum Newcomers 4 years, 10 months ago

    Hello Mick

    I didn’t do anything specific. I have never been interested in the details of MM. The only thing I would ask my consultant was how it is going. During my treatment I have always been confident that it would work and that also applies to the treatment my consultant decides I should have now it is returning. Initially it did some damage…[Read more]

  • kevin replied to the topic VTD & SCT Time scale in the forum Newcomers 4 years, 10 months ago

    Hello Jason,

    I was first diagnosed back in 2006. It returned again 1n 2012 and as of now has just started to come back again. On both previous occasions I had a course of CTD followed by a SCT. In both cases from stating the treatment to leaving hospital after the SCT was about 8 to 9 months. I don’t know weather this would apply to VTD. It…[Read more]

  • kevin replied to the topic Transplant anxiety in the forum Newcomers 4 years, 11 months ago

    Hello

    I was diagnosed in 2006. In that time I have had 2 courses of CDT and 2 SCT. They gave me about 4 1/2 years remission each time. (Just found out last week it has started to return). As has been said there are no set rules and everyone is different. Even my two treatments varied. One CDT ok and one not so good. One SCT ok and one not so…[Read more]

  • kevin replied to the topic Just been diagnosed!! in the forum Under 50s 5 years, 1 month ago

    Hello Richard,
    I like you was diagnosed when I was 48. That was 10 years ago. Since then it has come back once. I was treated both times with CTD and have had 2 stem cell transplants. Each treatment gave me full remission and am currently on no medication and having a blood test and see my consultant every 6 months. Am happy to answer any…[Read more]

  • kevin replied to the topic Just diagnosed in the forum Newcomers 5 years, 3 months ago

    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…[Read more]

  • kevin replied to the topic Paraprotein levels? in the forum Carers 5 years, 6 months ago

    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…[Read more]

  • 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…[Read more]

  • kevin replied to the topic New to forum in the forum Newcomers 6 years ago

    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…[Read more]

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