[tony642Moderator]

Good luck with it Lottie,

Keep your chin up and stay positive, let us know how you are doing with it.

Regards, Tony

[tony642Moderator]

Hi Peter,

I am one of the forum volunteers. I have not had the treatment you have had, so I cannot comment about it, but have you tried using the ‘Ask the Nurse’service on the MM website? These are very experienced specialist nurses who can probably give you more information about it. You could also try using the peer buddy service and ask to speak on the phone or zoom to someone who has had the treatments you have had to get their experiences of it.

I hope it works well for you, and I know this must be a difficult time for you, but keep your chin up and stay positive. Let us know how you get on.

Sincere regards, Tony

[tony642Moderator]

Hi Emma,

I am sorry to hear that you are having to wait so long for the results. I had to wait 3 weeks for my biopsy results, so I guess that is a normal period of time to wait, but of course, you have had Christmas and the new year in the middle, so that is why it is probably longer than normal.

I know you said your Dad had it 6 years ago, so you have probably got a lot of information about the disease already. However, since then, there have been some significant improvements in the treatments available, and new ones are being developed all the time. Unfortunately, the disease is incurable, but with the right treatment, a lot of people go on for may years to lead fulfilling lives.

We are not Doctors, but we are here to support you through this in any way we can, and dont forget that there is the peer buddy service where you can speak to one of the volunteers who are living with MM if you think this would be helpful to you. You do not have to do it now if you are not ready to, you can access the service when the time is right for you.

Please stay positive, keep your chin up, and let us know how you get on.

Sincere regards, Tony

[tony642Moderator]

Hi there,

I had SCT almost 3 years ago. You have probably gathered by now that it is not the most pleasant of experiences, but the effects only last a couple of weeks. However, the beneficial effects of the treatment can potentially go on for years. 3 years later I do not have any signs of active cancer, so for me, it was very worthwhile doing, and I would have no hesitation in doing it again if I needed to.

This must be a very scary time for you, first to be told you have the disease, then to be told that the treatment for it is not very enjoyable. We have all been there so we know what you are going through. However, they have to tell you all of the things that ‘might’ happen during the various procedures, but the majority are unlikely to suffer from them. Please go into it with a positive attitude, remembering that although the disease is not curable, the treatments available are very good at helping you live a normal and fulfilling life.

We are here to support you in any way we can, please let us know how you get on.

sincere regards, Tony

[tony642Moderator]

Hi Ethan,

Welcome to the forum, I am one of the volunteers on here. To be honest, you are the first that I heard of living with MM in China! How are you coping with COVID at the moment?

All of those on the forum are either living with the disease, or are carers of those living with it, so we know exactly what you have gone through, and we know what the treatment is like as well. We are not Doctors, but we do know how you must be feeling, and we have our own different coping strategies for getting your head around it all, and being positive for the future.

Please use the experiences of the many people on here who are willing and happy to help you and your family get through it. I am 3 years post-SCT and do not have any signs of active cancer at the present time, so the treatment has worked well for me.

You are probably also aware of the peer buddy service where you can refer yourself to Myeloma UK to be paired with someone who has the disease for up to 6 telephone sessions with one of the volunteers to talk about MM, the various treatments they have had, or just the universe, life and everything. I can recommend this service to you if you think you might need some of that kind of support. You don’t have to do it now if you don’t want to, but it is useful to know that it is always there at some time in the future if you need it.

There are some excellent treatments out there for MM, and although it is not curable, it is very possible to lead a normal and fulfilling life whilst living with it. Please stay positive and let us know how you are getting on.

Happy new year!

Regards, Tony

[tony642Moderator]

Hi Tearose, I am sorry to hear of your grandsons news, I hope he goes on to make a good recovery. I can only say that the treatment I have had on the NHS has been excellent.

Regards, Tony

[tony642Moderator]

Hi there,

I had a SCT almost 3 years ago, and have been classed as in remission without any maintenance treatment since then. To be honest, the treatment is not pleasant, but it only lasts a few weeks, so for me, it was worth it. What specific questions do you have about the treatment?

Regards, Tony

[tony642Moderator]

Hi Znab, sorry to hear your SCT has been delayed, I can only tell you of my experience. I had a SCT in January 2020, so almost 3 years ago. Since then I have been having blood tests every 3 months and there has been no signs of any active cancer, so classed as being in remission. Also since then, I have not been on any form of maintenance treatment.

For me, it was the right decision to make to have the SCT, and if I was told I needed another, I would go for it. As Richard says, it is not pleasant, but the effects only last a few weeks, and if it extends your life expectancy, then for me it is worth it.

Let us know how you get on.

Regards, Tony

[tony642Moderator]

Hi Shamrockgirl,

This might sound an obvious thing to say, but if you learn something which you think to be important, write it down in a book, so if you forget what it was, it will always be there for you. Also, when you are having consultations either face to face or on the phone, and you have questions you want to ask or anything you want to know, write them down as soon as you think about them, as you will probably forget them at the time of the consultation.

Poor memory is par for the course for a lot of us suffering with the disease. It is very frustrating, and sometimes you will think you are losing your marbles, but you are not on your own. Its easy to say but it is one of things you have to learn to live with. Just let those close to you know that it is a problem for you, and ask them for a bit of tolerance with you as it is something you do not have control over.

Let any of us on here know if can help in any way at all, that`s what we are here for.

Regards, Tony

[tony642Moderator]

I couldn`t find what you were referring to, can you be more specific where the offending post is please. It is possible that someone may have already removed it.

Thanks, Tony

[tony642Moderator]

Hi Judy,

From my own personal point of view, I found that the more I knew about the disease, the better I was able to cope with it, particularly when medical staff use terms that you don`t understand and that you do not know the significations of.

You cannot know too much, it is your body and you owe it to yourself to know what is happening with it. I think that if you know what is likely to face you, you can be more prepared for when and if it does happen. Knowledge is power. Stay positive.

Regards, Tony

[tony642Moderator]

Hi Mulberry,

I am a moderator, I will see if I can find it.

Regards, Tony

[tony642Moderator]

Hi Shamrockgirl,

I am one of the forum volunteers and have MM. I am sorry to hear of your diagnosis, but there is a good chance that it might not go on to full Multiple Myeloma. In my experience, fatigue is par for the course with the disease even at the smouldering stage. Could I suggest that you use the ask the Nurse facility on this site, as obviously they specialise in the disease and might give you more information. Let us know how you get on.

Regards, Tony

• This reply was modified 3 years, 1 month ago by  tony642.

[tony642Moderator]

Hi Tonyb,

I am one of the forum volunteers. I had a STC almost 3 years ago, and since then I have not had any active cancer, although I am tested every 3 months for signs of it returning. It is laying dormant so does not give me any symptoms and I am not on any kind of maintenance treatment.

The STC itself is not a pleasant procedure, but for me it was entirely worth it and Im glad I had it. It has to be a personal choice, but for most people it is a life-extending treatment. I would suggest you discuss it with your medical team. However, as you say you are at the upper age for which treatment is offered, so if you decide to not have it now, you might not be given another opportunity in the future.

This is a scarey time for everyone that goes through it, but there is support available at every stage. If you need any more information as to what STC entails, and what effects it has, so that you can make an informed decision, please let me know. Don`t forget that we have the peer buddy service where you can talk on the phone or on zoom with someone who has already gone through it if that would help.

Let us know what you decide to do.

regards, Tony

[tony642Moderator]

Hi Znab,

Unfortunately, I do not know anything about the programme you have been on, but I just wanted to say that I am really pleased for you that it has gone well for you. The tiredness will probably reduce as the chemo reduces in your body and you readjust to life without it. This is just another success story for the new lines of treatment being made available to those with the disease. Although there is no cure for it, there are many lines of treatment now authorised, or studies taking place with new treatments to help those with MM live relatively normal and productive lives, and you are a good example of that.

Stay positive and keep your chin up, and let us know how you get on.

Regards, Tony

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