[tony642Moderator]

Hi there,

I am one of the forum volunteeers. Although I have not had the same treatment as you, I have had some which was not at all pleasant. I had a stem cell transplant 2 and a half year ago, and since then I have had no detectable cancer, so for me it was worth it.

I know you must be going through a horrendous time, but stick with it and you will hopefully reap the benefits in the future. Stay strong and keep in touch.

Regards, Tony

[tony642Moderator]

Hi Lottie,

I am also one of the forum volunteers. I don’t know why but I have only just picked up your original post so I apologise for not replying sooner. Looking at the posts that have been sent to you already, there is not much more to say other than the disease affects different people in different ways, and although it is not curable, it is controllable, and there are many different treatments available, so if one regime doesn’t work well, they can try a different one. Also, there are new treatments coming out all the time, but in my view as a sufferer, one of the best things you can have is a positive attitude. For me, it was a bit of a wake-up call to say that none of us are here forever, and although I know nothing is going to happen to me in the near future, that I shouldn`t put off till tomorrow when I can do today. I know it is difficult to do, but try to put it at the back of your mind and go out there and enjoy yourself. There are lots of people who have lived with the disease for many years, and you could be one of those as well.

Don`t let it affect what you do or how you enjoy your life in the way that you want to if you are physically able to. You will find ways to cope, and with the support of medical science, and family and friends, the future is by no means necessarily bad news.

Please keep us updated as to how you are getting on.

Regards, Tony

[tony642Moderator]

Hi Slimynose,

Sorry for not responding for a couple of weeks but I have not been available. I just wondered if you have had an update on whether your DT-PACE is working or not, and also if you had spoken with the children and if so, how they took it.

Keep in contact with us and let us know what is happening.

Regards, Tony

[tony642Moderator]

Hi beattheaverage, did you manage to get insurance? If so was it a lot more expensive, and have you booked anywhere?

Regards, Tony

[tony642Moderator]

Hi Ren,

I am one of the forum volunteers and I also have Myeloma. Yes it is unfortunate that you did now know about this site earlier, I know a lot of people have got some useful information from it, and also found it useful to know that you are not the only one living with the disease even though sometimes it feels like it is.

I have not had the combination of drugs that you describe so I cannot give you first hand experience, but I can say that there are many different drugs they can try, and new ones coming out all of the time. Have you discussed your concerns wit your medical team, particularly your haematology consultant and specialist Nurse? I am sure they would be more than happy to discuss it with you and maybe look at alternatives.

Just because one course of treatment has not worked, it doesn`t man that nothing will. A lot of us have been here a long time after diagnosis, so it is not all doom and gloom. Keep your chin up, stay positive, and believe in hope.

Let us know how you get on, and if you have any other concerns you want to share, please let us know.

Regards, Tony

[tony642Moderator]

Hi Claro,

I have only just seen your post. I know a lot might have happened since then, so if you feel that you want to give us an update, then please do so.

Regards, Tony

[tony642Moderator]

Hi Jbal,

I am one of the forum volunteers. Have you asked why your husband needs to be on a maintenance dose? I had a stem cell transplant over 2 years ago and am not on any from of mainteneance. I know each patient is different, but if it is affecting his life, why not ask about the reason for it, or is there an alternative drug they can use. Don`t just accept what they give him without questioning it if you are concerned. They can only act in what they think is his best interest, if it is not working out for him then you need to let them know so they can at least look at trying something else.

Regards, Tony

[tony642Moderator]

Hi there,

I am also very keen to get back to holidaying, but very aware that the pandemic has not gone away, it is just not as newsworthy with other events going on. I am not keen to but queueing for hours at an airport, then in close confines with other people for hours both in the airport and on an aircraft, so I have therefore booked a cruise departing from the UK which means I do not have to do any of those things.

I go 4 weeks from today and cannot wait.

Regards, Tony

[tony642Moderator]

Hi Satellite,
That’s sounds like good news! Now things are looking a bit more positive, it might not be on your mind as much and you can try to get back to doing the things you most enjoy, even though it might be on a reduced basis due to the limitations that you have.

What I found difficult was not being able to do the things that I used to do as well as I could, but that slowly returned. You just have to accept that this is the new you, and the sooner that you do that, the better you will feel about yourself and the easier it will be for you to gain confidence about when you can do.

Just do what you can, and what you can`t at the minute do, just have patience and hope that you will be able to do it in time.

Regards, Tony

[tony642Moderator]

Hi jiffi

I have just read through your latest post, I am really pleased that things seem to be moving in the right direction for you. You can now look forward to better days to come.

Stay strong. Regards Tony

[tony642Moderator]

Another good thing to do is have a notebook handy and when you think of a question to ask your consultant or specialist nurse write it down straight away as you will probably forget what it was when you speak to them., chemo brain and all that!

Regards Tony

[tony642Moderator]

Hi Forest1,

I am one of the discussion forum volunteers. I am living with the disease but my wife was my carer when I was really ill. She says that the best thing you can do is just be there for when he needs you, give him a hug regularly, be there for him when he wants to talk about the dark side of things, tell him that his feelings are a common side effect of the disease, and that help is available through Myeloma UK if he (or you!) need it.

I hope he improves soon and please tell him that there are lots of us living with the disease who live normal lives and that in time, hopefully, he will be able to go back to doing the things he enjoys.

Please keep us informed as to how he is doing.

Regards, Tony

[tony642Moderator]

Hi Poco Loco

I am one of the discussion forum volunteers. When I first started on Zometa, I experienced a lot of what you are going through. However I have now been on it for 2 years, and the symptoms for me have now almost disappeared. I think your body gets used to it, although I still find having a sleep when I get home helps.

The bigger picture is that it is helping strengthen your bones and preventing fractures, so worth keeping up with. If the nausea and sickness are unmanageable, speak with your clinical team and they might be able to prescribe anti-emetics to reduce the symptoms.

Please let us know how you get on with it.

regards, Tony

[tony642Moderator]

Hi Elaine,

I am one of the discussion forum volunteers. I have only had one SCT but like you I lost all my hair. However it took about 8 weeks for me to notice any new hair growth, so hopefully you will see it soon.

I also noticed a change in my hair when it did finally grow back, it is much finer than it was before, and also I have noticed a change in my fingernails, (which are made from Keratin, the same stuff as hair!). They now grow at a much slower rate and are very soft so I do not have to file them down much as they tend to wear down.

Hopefully the SCT will have done what it is supposed to do, and you will see signs of returning to normality soon. Keep your chin up and let us know how you get on.

Regards, Tony

[tony642Moderator]

Hi there,

I am so sorry to hear of your story. I think it is a general problem where Myeloma is a little-known disease and diagnosis can be missed and blamed on something else. I don`t blame you if you feel angry about it, Myeloma UK are trying to get knowledge of the disease made more widely available, and I am just sorry it was not able to be of help in your mother’s case.

It is difficult to know what to say in these circumstances, but keep your chin up and take one day at a time. Just think of the happy memories you have!

Sincere regards, Tony

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