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
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
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
Hi Peter,
I am also one of the discussion forum volunteers, we are here for the both of you if we can help in any way. We are either living with the disease or caring for someone who is, so we have seen both sides of the story. Just take one day at a time and one thing at a time.
Please tell your wife about the help Myeloma UK can offer, I am sure that she will find it helpful. Let us know how you get on.
Regards, Tony
Hi David,
I am also one of the peer discussion volunteers. I am sorry to hear of your diagnosis, but as you might have already gathered, there are quite a few of us living with the disease. I was diagnosed 3 years ago and am relatively fit and well. No one likes the word cancer, but there are some very good treatments available with good outcomes. I hope that the regime that you are on is able to allow you to continue as near as normal a life as you can manage. Just take one day at a time, and one thing at a time.
Keep us updated as to how you are getting on, and we are here anytime you need us or would just like to chat. Onwards and upwards!
Regards, Tony
Hi Slimynose,
I just wanted to do a follow-up to see how things were going, particularly with th echildren? hopefully you will have got some help, and I am hoping that as you have not posted on here recently, it is a good sign and things are improving.
Please let me know how you are getting on.
Regards, Tony
Hi Caroline 123.
I am also one of the peer forum volunteers. I was diagnosed in May 2019 and have undergone autologous stem cell transplant. The outcome for me is that the cancer has been inactive since then, so it goes to show that teratments can be effective, and even if relapse occurs, then there are other lines of treatment that can be offered.
Because of those treatments, there are many of us living with the diseased leading normal lives. The main thing is to have a positive attitude. There will be times when he doesn`t want to do things, but when he does, go out and enjoy those days.
My wife cared for me when I was released from hospital, and she found it useful to speak with carers of other sufferers as to what was the best way to help me, so maybe that is something you could consider doing? She found it helpful to know that she was not alone and many other had gone through exactly what both of us were going through.
Keep us informed of how he is going on, and let us know if there is any other way in which we can help.
Regards, Tony
Hi Tommac, I am another of the peer forum volunteers. I was the same age as you when diagnosed and it hit me like a ton of bricks! however, you are absolutely right, positivity is the key. I have always said that dealing with cancer is as much an issue in your head as it is in your body.
There are lots of different treatments for Myeloma these days, and more are being developed all the time. Many of us who are living with the condition are living very normal lives, so there is hope. Just keep your chin up and I am sure your medical team will keep you informed of everything you need to know. Keep us updated as to what they say and what your progress is.
Power to us oldies!
Regards, Tony
Hi Satelite,
I am so sorry to hear that your appointment to find out what is happening has been put back. I know how difficult it is to wait, and what sorts of things can go through your mind. But lets hope they can get you sorted out as to what it is as soon as possible. Even if it is news you do not want to hear, remember that there are lots of different treatments available (with new ones coming on line fairly regularly), and lots of us managing to live normal lives whilst living with the disease.
I know it is difficult, but try to keep your chin up and stay positive, and remember we are always here and want to give you moral support when you need it.
Let us know what happens. regards, Tony
Hi Caroline,
I am one of the peer forum volunteers and I am living with the disease. I am sorry tohear that your husband has gone through the mill. When I had my stem cell harvest, it also took 2 days, and I think this is very common, so don`t worry about that.
Did he have the transplant and how is he doing now? Please let us know.
Thanks, Tony
Hi there,
I am also one of the peer forum volunteers. I have been very careful during the pandemic and have managed to avoid the plague. However, i think that things are now changing and alsthough I have not travelled abroad yet, I am now planning to go on a cruise in May. I think that if you take ensible precautions that we all have been doing, such as staying away from crowds, trying to void close personal contact with others, and washing and sanitising hands on a regular basis then you should be reasonably safe.
I would also be cautions of eating things with theri skin on, such as apples and pears, when they could have been handled by other people who might have something which you do not want, so just take the skin off!
I think the main thing is being sensible and getting on with your life. I think that COVID will be around for a lonfg time and we cannot all lock ourselves up until it dissappears. So I would say get out there and enjoy yourself, just be careful!
Regards Tony
Hi Suzi123,
I am one of the peer forum volunteers. I am very sorry to hear of your diagnosis especially as you have been there before, but you obviously survived that one, so of course that with treatment, a positive outlook and some hope you can live many years with Myeloma.
Although it is not curable, it is treateable. I was diagnosed in different circumstances to you, but the thing is hopefully they will have caught yours at an early stage. There are many treatments now available so your medical team will have a number of options which they will of course discuss with you to from a plan of action as to what is best.
I had a stem cell transplant over 2 years ago, and since then there has been no active signs of the cancer, although it is still there but just lying dormant. This means I can live a nearly normal life. I can do all the things I want to do, including swimming, riding my mountain bike and going to the gym several times a week. Not bad for a 63 year old! lol
I know it will have come as a bit of a shock, no one expects it (just like the Spanish inquisition!)! It is something you need to get your head around, but we have several people on here who are also peer volunteers who are willing to give you the benefit of theri expereinces, and there is also the peer buddy scheme where you can speak to someone else on the phonewho is living with the condidtion if you would prefer to talk to someone rather than do it on here.
keep your chin up, and keep positive. Keep in touch and let me know how things go.
Regards, Tony
Hi Satelite, I am also one of the forum volunteers. Myeloma is not a well known condition so I am not surprised that yo have not heard of it before. I am sure that it has already been said, but a lot of blood conditions are very similar to each other, and of course consulting with the internet can sometimes scare the life out of you!
The only way that I had my Myeloma confirmed was to have a bone marrow biopsy taken from my hip. I know its easy to say, but please don`t worry unnecessarilly about what it might be, wait until it is confirmed and then you can get a plan of action as to what they think is best.
Even if it is Myeloma, there are plenty of us that have been around with it for quite a few years, and there are lots of different treatments available to help you with it. It is not automatically doom and gloom. Keep your chin up, and stay positive.
Regards, Tony
Dear Slimynose,
Thanks for getting in touch. I am really sorry that things do not seem to be going your way at the minute. I havn`t had DT-PACE so I cannot tell you much about it. I have not heard of anyone else whose Myeloma is resitant to treatment.
I know you probably have, but have you tried talking to the children openly and honestly about what you have and what you need to go through? and that it is necesary for you to go into hospital to try to get better? Kids are more resilient than yuo think! There may well be counselling available for children to help them cope, have you looked at that?
I know it has been a setback when you thought you were doing so well, but please remember that the medical staff will always act in your best interest and they will recommend things which they think are for the best.
Have you tried coping mechanisms for yourself? I have always said that dealing with cancer is as much an issue in your head as it is in your body. You have to try to look after your own mental health.
There is always hope although it is likely that more treatment is required, but keep your chin up and keep strong. Please keep in touch and let me know how you get on.
Regards, Tony
Hi Jiffie,
I am also a forum peer volunteer. I echo everything that has been said already. Before SCT I had terrible night sweats. I was absolutely drenched in sweat, which then made me very cold so I couldnt sleep. These dissappeared after SCT, and I would definitely have it done again should the need arise.
If you have a fridge/freezer in your room, I found having plain yoghurt, ice cream and ice pops to suck a good way of refreshing me and getting some sugar inside me as I was off eating altogether. As others have said previously, it is bearable, so good luck with it and I hope it has the desired effect.
Regards, Tony
