Hi Emma,
thanks for the update. The good news is that as it is MGUS, there is a good chance that it will not go on to develop into full-blown Multiple Myeloma. Also, the further good news is that they are keeping an eye on you every 12 weeks, so if anything does start to develop, they can give treatment at an early stage.
I know it is easy to say, but for the time being, you can try to put it at the back of your mind and lead a normal life. Good luck with it, and keep us informed as to how you get on.
Keep your chin up.
Regards, Tony
Hi Ethan,
I am sorry to hear that your wife suffered as a result of them not telling you what was happening! As for COVID, yes you are better off getting it now as the SCT will destroy your immune system which means you would not be able to fight it off. They would have probably postponed the SCT until the COVID had cleared up.
The reason why you are in isolation after SCT is that you are very vulnerable to catching anything and not being able to fight it off 9even a common cold!). The immune system does recover, but it may take several weeks to do so. During that time you have to be protected as far as possible from being exposed to anything which might be harmful to you.
Hopefully, you will be over COVID soon and you can have the SCT as planned. Let us know how you get on.
Regards, Tony
Hi all,
I had a Hickman line inserted before SCT, and had it under local anesthetic. They made 2 incisions in my upper right chest, just below the collarbone. The idea is to get a line straight into the jugular vein. They can administer all your IV drugs and take blood samples from this. It is much better than having a canular in the back of your hand.
The procedure is not painful, but there is a lot of pulling and tugging going on, so it is not comfortable. If you feel any pain, tell them and they can top up the local anesthetic. When inserting the tube, they have to do it by watching an X-ray machine to make sure it goes in the right place. It took about 45 minutes to complete.
I hope this helps.
Regards, Tony
Good luck with it Lottie,
Keep your chin up and stay positive, let us know how you are doing with it.
Regards, Tony
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
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
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
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
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
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
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
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
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
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
Hi Mulberry,
I am a moderator, I will see if I can find it.
Regards, Tony
