[kevinParticipant]

Hello Paul

I have had 2 SCT my first when 49 and the second when 54. Both times they used my own stem cells. It is very specialist so you do have to go to a hospital that does the procedure. I live in Kent were I am treated but had to go to London for both my SCT. As Mulberry said about seeing a SCT Consultant prior to both of my SCT I went to see the transplant Consultant overseeing my SCT in London to discuss the procedure. My understanding about myeloma be curable is that at present this is not the case but that it is very treatable and getting more so each day. I was diagnosed in 2006 and am at the moment in full remission after 2 relapses. You may find it helpful to contact the Myeloma UK info line and have a chat.
Best wishes
Kevin

[kevinParticipant]

Hello

As you said and Mulberry said it differs for everyone. I have had 2 SCT and they were both different in how I fel. I had my stem cells harvested about 2 weeks before going into hospital. I had my high dose chemo the day after i was admitted and then 2 days later had my stem cells put back in. during my first SCT back in 2007 I don’t remember feeling too bad with the main thing being a loss of appetite. I was in hospital for about 16 days. My second transplant I had in 2013. Same treatment timing but this time as well as the loss pf appetite I remember not feeling as well and was in hospital for about 18 days. My discharge was dependent on my bodies imune system to come back to a level able to fight infection. The hardest part for me each time was trying to pass the time while in hospital.
Each SCT gave me about 4 1/2 years full remission. I relapsed again in 2017. Finished treatment and maintenance in Nov 2019 and am again at the moment in full remission.
Best wishes
Kevin

[kevinParticipant]

Hello Kazt

I was diagnosed in 2006 aged 48. I had my first SCT in 2007 and my second in 2013. I relapsed again in 2017 and finished my last treatment in Nov 2019. My two SCT’s gave me about 4 1/2 years full remission each. My last treatment also gave me full remission which is were I am today. I have always based my decisions on treatment with my discussions and advice from my consultant with whom I have the utmost faith and trust. He has got me to 2020 and in full remission. Ultimately though the decision has to be a personal one.
Best wishes
Kevin

[kevinParticipant]

Hello nbc

I echo Kayles post On my part I was diagnosed nearly 15 years ago and with a couple of hiccups on the way I am again today in full remission. Even since my diagnosis there have been new treatments with more in the pipeline. Being positive does help. I have seen my children get married and now have grandchildren. I fully expect to see them get married as well.
I am quite happy to answer any questions (if I can) that you may have.
Best wishes
Kevin

[kevinParticipant]

Hello Kayle

The last couple of lines of your last post – what a wonderful statement and for me sums everything up. I am now 15 years on from my initial diagnosis and have many more years (memories ) to to go.

Best wishes
Kevin

[kevinParticipant]

Hello Darren

I am not sure if there is anything else I could say that would help al be it to say everyone is different, the disease and treatment seem to be different for each person and the decisions you make are yours after listening to what your consultant and care team tell you.
My decisions are easy as I follow what my consultant and others have said during my journey.
I had never heard of myeloma before being diagnosed and still don’t know too much of the details. This is my choice as it is something that has taken some of my time and wont let it take anymore than necessary. I have no idea of alll the different counts and levels. The only thing I take an interest in is the paraprotein level.
Am quite happy for you to message me with any questions you may have and will answer if I can.
Best wishes
Kevin

[kevinParticipant]

Hello Mark
I was diagnosed in 2006 aged 48. Relapsed twice since then and had 2 SCT in this time. My first two treatments with the SCT each gave me about 4 1/2 years full remission. I finished my last treatment and maintenance course in Nov 2019 and again achieved a full remission. Since I was diagnosed there have been many new treatments with new treatments in the pipeline. As Shaun has said I am quite happy to answer any questions that you have if I am able.
Best wishes
Kevin

[kevinParticipant]

Hello Darren

I have had 2 SCT one in 2007 and the second in 2013. They both gave me 4 1/2 years of full remission. I relapsed again in 2017 and this time was treated with carfilzomib followed by a maintenance course of carfilzomib which finished in Nov 2019. This also achieved a full remission. This is still the case with my only treatment at the moment is Zometa every 3 months.
Hope this is helpful
Best wishes
Kevin

[kevinParticipant]

Hello Kayle

Sorry to hear your diagnosis. Yes the stem cell transplant is done after the chemo if you have one. It will be down to your consultant so next time you see him you should ask the question. I have had 2 SCT now and they were done a few weeks after my treatment finished. I have just finished treatment after my second relapse but did not have a SCT as I believe they only give you up to two.
Best wishes
Kevin

[kevinParticipant]

Hello Clare

Glad to hear your husband is responding to the treatment. I am afraid I cant remember exactly how long it was before I noticed a difference but think it may have been very gradual. I was on pain killers but can’t be sure how effective they were I certainly remember the excruciating back pain and then at some point during my treatment it had gone. Also I only had to contend with my vertebrae. The glass half full attitude will help as I myself have always assumed I would beat it. Like you I do not understand all the counts (maybe paraproteins a little) and numbers and each time I see my consultant all he needs to tell me is that my bloods are ok. (or not !)
Sorry couldn’t be more help and hope things get better soon.
Best wishes
Kevin

[kevinParticipant]

Hello Clare,

As I remember the pain did ease quite considerably. My main area of disease was my spine and early on had the possibility of some treatment that might have helped. I decided not to but not sure now whether I should have. I still get pain now but not on a regular basis but take medication when required. Apart from when I am on treatment and after my SCT’s I think I function to about 95% of what I would have I am 9 months after finishing my last treatment and now pretty much do what I would normally do. I think there are some things Prior to this I was fit and active and there are some things that I just have to put down to growing older but will never know foe sure. My brain still thinks I am a 20 year old.
Best wishes
Kevin

[kevinParticipant]

Hello Clare

I am now 62 and was diagnosed back in 2006 after months of back pain before a scan lead to diagnosis. I do remember the severity of the pain but like you have been told mine did ease after starting treatment. I have had 2 relapses since then my last treatment finishing in Nov 2019. Al 3 treatments gave me a full remission with about 4 1/2 years between each relapse. I expect at least anther 5 years this time. Since my diagnosis there have been many new treatments developed with many in the pipeline. It seems to be a very individual disease regarding symptoms and treatment. I feel very positive about the future regarding new treatments.
Best wishes to you both
Regards
Kevin

[kevinParticipant]

Hello Karl

I’ve had two SCT one in 2007 and the other in 2012. I was in hospital hospital for around 17 days each time. They were both different experiences regarding side effects etc but the main thing I remember about both was trying to occupy myself to pass the time. The second one seemed to be harder but I think that was because I roughly knew what to expect and it wasn’t a new experience. I didn’t suffer any dramatic side effects on either occasion. I am not sure now what they told me that I might expect but was told they should be able to help treat if any occurred. I think the main battle is trying to keep yourself occupied as I remember the time did seem to drag. On both occasions the staff and the care I received were exceptional. Any hobbies or pastimes you enjoy and can do from a hospital room are the way to go.
Best wishes
Kevin

[kevinParticipant]

Hello Paul

I was diagnosed in 2006 age 48. Have had 2 relapses since then. My first two treatments were CDT both followed by a SCT. My own cells. Both times I achieved about 4 1?2 years full remission. My last relapse was in 2017. Then I had carfilzomib and dexamethasone as my initial treatment followed by a smaller dose as maintenance which finished in Nov 2019. As of now I am in full remission. Had a blood test yesterday so hope to find out soon if this is still the case and am sure it is. I believe that 2 SCT are the most you get. The only treatment I am on at the moment is Zometa which I have every 3 months. I am hoping to get at least the same remission if not better. I had the 2 SCT as it was my Consultants treatment plan and I have great faith in him.
Best wishes
Kevin

[kevinParticipant]

Hello Claire

Sorry to hear about your current situation. I’m not sure what you should expect from your appointment or length of a diagnosis. I believe I was diagnosed after CT scans and a biopsy. This is because I think that consultants have different ways of dealing and treating myeloma and also because it was a long time ago I was in your situation and the memory is a bit hazy. I was diagnosed in 2006 at the age of 48. I have had 2 relapses and finished my last treatment in Nov 2019. I am at present again in full remission. Hopefully your diagnosis will come back as something curable. Should it be Myeloma I hope this positive tale helps .
Best Wishes
Kevin

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