[kevinParticipant]

Hello Yvonne

Similar to your husband my MM started with severe back pain when I was 48. That was 16 years ago. My exact memory of that time is a bit sketchy. I was offered some surgical intervention which I declined. Looking back should I have? I believe after starting my treatment (CTD) the severe pain started to ease. I still have back pain issues but certainly not as bad as when diagnosed. I still do much today as I did pre diagnosis and think some of my issues are the natural aging process and still think I have the body and not just the mind of a 20-year-old. Just to say although over that period I have had 3 lines of treatment I am currently in full remission (ie no detectable paraproteins).
It may not be curable, but it is certainly treatable.
Best wishes
Kevin

[kevinParticipant]

Hello Sunflowers

Sorry to hear your situation. As you have found the first few weeks can be hectic and stressfull. Things settle down and you get into your treatment routine. I was diagnosed when I was 49 and here I am now 64 in full remission although a couple of hiccups on the way. New treatments since then and more coming. My feeling is and I have read others saying this is that a positive attitude helps. As I say to people I am going to grow very old very discracefully.
Best wishes
Kevin

[kevinParticipant]

Hello Tom

Nice to hear from you again. Remember you as think we’ve had a similar time. Me 2006 diagnosis 2 SCTs etc. Always enjoy your possitivity as thats me as well and am sure it has helped. Had the dex but not pom but glad to hear your doing fine. I’m in remission at the moment and on 3 monthly zometa. There have been a few new treatments since we were diagnosed ‘way back when’ and results seem to be getting better.
Best wishes
Kevin

[kevinParticipant]

Hello Lottie

Great news how things are going. As you say everyone is unique. I was even ‘unique’ with myself !!!! I had my second and final SCT back in 2013 which gave me another full remission. The experiences from each one (my first was in 2007) were different for me – side effects etc. All I could offer is that I found passing the time difficult as you are essentially confined in your room. So take as many things as you can to keep you occupied and maybe even think of a new hobby you may have wanted to try that you can do in your room. The other thing I remember is lack of appetite after the melphalan. When it did start to return I had cravings for all sorts of things that are not part of a balanced diet eg basic cheese burger, haribos and various flavoured fizzy drinks. The main thing for me though was passing the time. Its a bit of a journey but doable. Best wishes
Take care
Kevin

[kevinParticipant]

Hello lilib

I have taken a similar view to your husband. I was diagnosed back in 2006. I still know very little about myeloma with the only thing I look at are the paraprotein level. I have always had complete faith in my consultant and he continues to do a great job for me. My view is that it may not be curable but is certainly treatable. There have been many new treatments since my diagnosis. I am very confident that I will grow very old very disgracefully.
Best wishes
Kevin

[kevinParticipant]

Hello
Sorry to hear you news but you have found a very helpful and supportive site. I think the main thing to take on board is that at present it may not be curable but is certainly treatable. Its been a while now since diagnosis (2006) but I remember there was a lot to take in and comprehend before settling down into the routine of treatment. An individual disease and also treatments can vary depending on general health, fitness and the treatment your Consultant decides on. I would say to ask your consultant/team any questions you have and possibly writing them down as they occur to you and have someone with you to help remember what is said. Best wishes
Kevin

[kevinParticipant]

Hello Lottie
Sorry to hear your news.
The first thing to say is that it may not be curable but it certainly is treatable with new treatments all the time. This certainly has been the case since I was diagnosed in 2006 when I was 48. I have had 3 treatments and 2 SCT since then and am currently in full remission. It seems to be a desease that affects individuals in different ways and I think that also applies to the treatments. I had the same treatment twice and the side effects were different each time. This was also the same for my two SCTs. For me none of the side effects were too bad, the main one I remember was fatigue. I have had two SCTs and I think that is it for them for me. I dont know the critria for being offered but believe it is down to whether your body is strong enough and as such I had many tests before each of mine. It is also your choice. I personally have never delved into the intricasies of the deasese and my only guide is with the paraprotein level. My current status is that they are non detectable. I know that when these start to rise to a cetain level I will need treatment. I have a great consultant and let him look into the ‘details’ for me. Still here nearly 16 years since diagnosis and intend to grow very old very discracefully.
As I have said I dont know much about the disease itself but am happy to answer any questions about my journey (if I can remember !!)
Best wishes
Kevin

[kevinParticipant]

Hello David

I was diagnosed when I was 48. That was back in 2006. Three treatments since then with each giving me full remission. That is were I am now. Many new treatments since I was diagnosed and many to come. I intend to grow very old very discracefully.
Best wishes
Kevin

[kevinParticipant]

Hello Rael

No problem at all. I am quite happy to answer any questions I can about my journey. If you have any other questions please ask via the forum or email me. This treatment certainly was effective for me and hope the same for your husband. The drop in the pp numbers are certainly looking good.
Best wishes to you both
Best wishes
Kevin

[kevinParticipant]

Hello Rael

Since my diagnosis in 2006 I have always left my treatment in the hands of my consultant and have never delved into the depths of myeloma or my treatments. We have had discussions over certain courses of treatments and having the utmost confidence in my consultant I dont go into the nitty gritty. The only thing I have a little knowledge of is paraprotien numbers. I say this because I cant be a 100% about the details of my carfizomib treatment. I think I had about 6 months of the ‘treatment dose’ and then the same combination of drugs but a smaller dose which I think was classed as a mantenance dose until Nov 2019. I have not been on any ‘treatment’ drugs since that date and now only have my zometa infusion an a daily adcal. I have a blood test inclucing paraprotien check every 3 months prior to my zometa. last one showed still in full remission, next one due in March. Sorry couldn’t be more specific but hope this helps a little.
Best wishes
Kevin

[kevinParticipant]

Hello Laura

I was diagnosed in 2006 and at present after 3 treatments in full remission. It is treatable and not curable with new treatments all the time, many since I was diagnosed. My personal situation is that I am positive and have no doubt each time it tries to have a go at me I will just beat it again. I have not delved into the fine details of it and the only thing I about are the paraprotein numbers. I let my consultant deal with the nitty gritty and when he tells me my bloods are ok and paraprotein not detectable that’s all I need to know. I have no trouble talking about it and no problem answering any questions about it as long as I can and on how I feel. I don’t think it has changed me a lot other than a few decisions I have made that with hindsight would have changed. also as I get older I cant be sure how I feel (physically) is because of it or old age or both. Saying that I intend to grow very old very disgracefully.
Best wishes to you and your Dad
Kevin

[kevinParticipant]

Hello
I was diagnosed back in 2006. Cant remember the exact details but had a course of CDT over about 6 months followed by a SCT. This gave me full remission. After relapse in 2012 I asked to have CDT again with my consultant agreeing saying if it didn’t work there were other options. Again think it was over a period of about 6 months followed by another SCT again getting a full remission. This again lasted about 4 1/2 years. Just to say though I believe if there are struggles with side effects you can have a break during the treatment, spreading it over a longer period. I believe I had a short break during my second treatment. My next treatment was then carfilzomib which also gave me full remission which is were I am at the moment.
Best wishes
Kevin

[kevinParticipant]

Hello
Just to let you know I was diagnosed when 46 and after a couple of hiccups am at present 15 years later in full remission. I was fortunate and didn’t have bad PN but would just like to echo what Mulberry written. Once treatment starts and the close monitoring begins things can be adjusted to sort your personal situation. I have found a positive attitude has been invaluable.
Best wishes to you both
Kevin

[kevinParticipant]

Hello Melanie

All I could say is to echo both Paula and Lili’s posts. I was diagnosed 15 years ago aged 49. Each treatment gave me a full remission.
Best wishes
Kevin

[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

[Author]

Posts