[kevinParticipant]

Hello Miley

My first 2 treatments were cyclophosphamide dexamethasone and thalidomide followed by a SCT. Each one gave me about 4 1/2 years full remission with no maintenance treatment although I was offered it if I wanted it. My last treatment was carfilzomib and dexamethasone. After the main treatment I was put on a reduced dose for about a year which was classed as maintenance. I finished that in Nov 2019. I am still in full remission and am only having a 3 monthly infusion of Zometa which is to help bone loss and prevent fractures.
Best wishes
Kevin

[kevinParticipant]

Hello Miley

Sorry to hear about Mum. I was diagnosed when I was 48 which was nearly 15 years ago. Have had several treatments over the years each one giving me full remission which is were I am now. Although still not curable it is treatable with new treatments since I was diagnosed. it can be overwhelming at the beginning, everything gets thrown at you at once (treatment plan, scans, tests, appointments etc) but it does settle down and I think positivity helps and I am very optimistic about the future.
Best wishes
Kevin

[kevinParticipant]

Hello Dave
Sorry to hear your news. I was diagnosed when I was 49 and that was over 14 years ago. The mind does keep spinning initially and there is a lot to digest but I found was that when I began to process everything it began to settle down. There have been new treatments even since I was diagnosed with more on the way. Although still not curable it is becoming more treatable. I am currently in full remission and optimistic about the future.
Hope this helps a little and if there are any other questions you have for me I am more than happy to answer (if I can)
Best wishes
Kevin

[kevinParticipant]

Hello Suzie

Yes it is a stressful time and a lot to get your head round. All I can offer is that I was diagnosed in 2006. Few treatments each giving full remission which is were I am today. Although not curable it is becoming more treatable with new treatments all the time. There have been several new ones since I was diagnosed. I am very optimistic about the future.
Best wishes
Take care
Kevin

[kevinParticipant]

Hello Iain

I started Carfilzomib and dexamethasone (no revlimid or equivalent)in January 2018. I had 17 cycles of which the last 11 cycles were classed as maintenance. This finished in November 2019. I have already had 2 previous treatments over the years (CDT twice and 2 STC) so no SCT after this one. I remember having very little side effects other than not sleeping the night after having dex. I was fortunate enough to have my treatments at home which made things a lot easier. this achieved a full remission which is were I am today and am on a 3 monthly infusion of zometa and a daily adcal lozenge.
Best wishes
Kevin

[kevinParticipant]

Hello Bradlyn

Sorry to hear about your situation and pain. Although you haven’t had a diagnosis yet I know it must be worrying time. All I can offer is that I was diagnosed in 2006 and achieved full remission after each of my treatments and am in full remission today. It is becoming more treatable all the time. There have been many new treatments since I was diagnosed.
Best wishes
Kevin

[kevinParticipant]

Hello Karl
Have been on 3 monthly infusions for nearly three and half years now and have not noticed, or remember initially any side effects but was told that you should inform your dentist that you are on this medication. I might be wrong but something rings a bell with me about side effects make occur initially but should ease off. As I say not sure about this so would suggest you ask your consultant.
Best wishes
Kevin

[kevinParticipant]

Hello Pippy

After my first treatment (CTD) finished in 2007 I had read on this forum that some people had been given maintenance treatment. I asked my consultant about this and he said he doesn’t generally do this but if I wanted to have this he would put me on some. I cant remember what I was offered. I decided not to. After my first relapse I had the same treatment again and also did not have any maintenance treatment after this. For my 2nd relapse I was treated with carfilzomib over about a 6 month period. I then had a smaller dose over 16 months which I assume could have been classed as maintenance. I finished that in Nov 2019 and am now only on a 3 monthly infusion of zometa. Each of my main torments gave me full remission. I had a SCT after my initial treatment and first relapse but not after my 2nd relapse.
Best wishes
Kevin

[kevinParticipant]

Hello

Sorry to hear your news. Hope this might help a little I was diagnosed in 2006 aged 49. My experience is that it is a very individual disease and that a treatment that doesn’t work for one might work for another and visa versa. They say at the moment myeloma is not curable but treatable. Since my diagnosis many different treatments have become available with more in the pipeline. Although I have had two relapses since diagnosis each time my treatments gave me full remission. As of today I am still in remission and only on a 3 monthly infusion which helps the bones. I am sure if you get in touch with Myeloma UK they would be able to point you in the right direction to help his wife manage.
If there is anything you wish to ask me please do and if I can I will answer although I have to say I don’t know very much about the technicalities of the disease.
Best wishes
Kevin

[kevinParticipant]

Hello Clare

Yes thank you doing ok in full remission since last treatment finished. I forgot to mention that I am also on a daily Adcal tablet which runs alongside my zometa treatment so don’t know if this might be relevant.
Best wishes
Kevin

[kevinParticipant]

Hello Clare

Sorry to hear this about your husband. When I was diagnosed back in 2006 I was put on bonfos which was a daily capsule. I was on this for several years. When I last relapsed in 2018 along with my treatment I was put on a monthly infusion of zometa. This was for about 2 years. Now my treatment has finished I have been having an infusion every 3 months. This involves an infusion of fluids followed by the zometa taking about 20 minutes and then another infusion of fluids. I have not noticed any side effects at all. However, I am not sure but I think I might have been told that I might notice some side effects initially which should wear off. I might have remembered this incorrectly but might be worth asking if this is the case.
Best wishes and Happy New Year
Kevin

[kevinParticipant]

Hello Clareb

Sorry to hear your husbands situation. Don’t know whether this will help. I am now 14 years post diagnosis and now 62. My first treatment was CTD followed by a SCT and achieved full remission. When I had my first relapsed my consultant wanted to put me on another treatment. Sorry I cant remember what that was. However I asked if I could try the CDT again as it worked and I had few side effects. His response was yes and if it doesn’t start to work we will switch to the other treatment. My experience is that treatments can be switched and with so many more now available since I was first diagnosed in 2006 this increases the possibilities of finding one that works. I finished my maintenance treatment following my third treatment in November 2019. This was different to first two treatments. I feel very confident about the future. I have a blood test coming up but as it stands now I am in full remission.
Best wishes
Kevin

[kevinParticipant]

Hello Deano

I would certainly echo Narens post. Like you I checked the internet as I had never heard of myeloma and found the 5 years prognosis. 5 years !! that was 14 years ago and still counting. Naren mentioned positivity and for me positivity was the key. I have the utmost confidence in my consultant and everyone else that has looked after me over the years and that confidence ? positivity just keeps growing. I have no doubts I will be here for many years to come.
If you have any questions about my journey please ask.
Best wishes
Kevin

[kevinParticipant]

Hello Deano

sorry to hear your news. I remember what it was like for me. I was told that although not curable it was treatable. That has been the case and believe it is becoming even more treatable. Here I am and at my last blood test am in full remission. I was diagnosed in 2006 aged 49. Since then I have seen both my children married and have 2 grandchildren. Also since then treatment has come on leaps and bounds with new ones being used now that I had never heard of initially. There are also new treatments coming alng all the time. I have always felt positive about my treatments and continue to do so.
Best wishes
Kevin

[kevinParticipant]

Hello Paul

I haven’t been in remission since 2006 but have had 2 relapses. Each of my SCT gave me about 4 1?2 years full remission. My last relapse was in 2017. I then started treatment with carfilzomib and dexamethasone followed by a period of maintenance with the same two drugs. I finished this in November 2019. This again gave me full remission. The only treatment I have been on since then is a dose of Zometa (zoldronic acid) every 4 months.
Best wishes
Kevin

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