Hi Hyde,
I was 60 when I had my SCT. I was told that the decision as to whether you are offered SCT is sometimes age-related, so if you decide to not have it now, and you wait until you feel you need it, then you might not be offered it then. best to speak to your medical team about the consequences of not having it now.
I know it is an uncomfortable time, with an unwanted lengthy stay in hospital, but I have now been cancer free for over 3 and a half years, and if I needed it again, and was offered it, I would accept it without question, as without it in the first place, my cancer was so advanced that I am convinced I would not be here now.
It is of course your choice, and your decision would be respected.
Regards, Tony
Hi Lottie,
My understanding of Paraproteins is that they cannot accurately measure them if they are 2 or less, which is a very low level. They are not saying that you have not got any paraproteins, it’s just that they are so low they can’t measure them.
This is good news, I am in the same position.
Hope this helps.
Regards, Tony
Hi Mike,
Welcome to the forum! I agree with Mulberry as it sounds like you have a very low level of MM, and if it is smouldering, there is a good chance that it will not develop into full MM for many years, so it will just be a case of keeping an eye on it.
Whatever happens we are to help by giving advice on how it was for us as sufferers, or the carers of sufferers, and to support you as far as we can through whatever it is you need to do.
Please let us know how you get on with the results of your future tests.
Regards, Tony
Hi there, I am very sorry to hear of your husband’s relapse, but unfortunately, that is the way with MM. We are here for you anytime you want support, advice, or just someone to moan at.
I know it is not the news you would have wanted, but as a sufferer of the disease, I know that the best thing I had was the support of my family. I know how important that is. Please send him my best regards, and I hope he goes on to have treatment that will put it back to bed.
onwards and upwards!
regards, Tony
Hi Lottie,
I am really pleased everything went well and things are looking positive for the future. It is posts like yours that give hope and confidence to those newly diagnosed. I sincerely hope you go into a long remission. I am now over 3 years post-SCT and have had no signs of active cancer since then.
Keep up the good work, onwards and upwards!
regards, Tony
Hi Yvonne,
Please tell Richard that while things might look dark at the minute, hopefully with treatment and time, things will get better, and tellhim that he will start having more good days than bad ones. I know it is difficult to see the light at the end of the tunnel just at the minute, but tell him to keep a positive state of mind, and have achievable goals to reach for, such as getting back on his mountain bike, even if it is only to ride to the end of the street and back.
Please let us know how he is getting on, and don’t forget to let us know how you are coping, and whether we can offer any support that you might require. In my experience, MM does not just affect the person that gets it, it affects the whole family, so make sure you look after yourself as well as him!
regards, Tony
Hi Maria,
Thanks for the response. I am sorry but I do not have any experience in using CBD oil. Have you tried using the ‘Ask the Nurse’ facility on this website? this puts you in contact with specialist MM nurses who I am sure will help you with information about CBD and whether or not you should use it. Just look under ‘Help and Support’ at the top of the page.
I would be interested to know the result so that I can pass it on to anyone else that asks, can you please let us know what you find out.
Onwards and upwards!
regards, Tony
Hi there,
I had PN in my hands and ribs. It was very painful but I cannot remember my hands getting hot. I had 2 vertebral wedge fractures which trapped nerves to cause the PN. I had nerve block injections in my spine and take Gabapentin regularly which has completely dealt with the PN.
Please have a discussion with your medical team about it, I am sure they will be able to help. Let us know how you get on. Keep your chin up.
Regards, Tony
Hi Yvonne,
I was diagnosed with MM 3 years ago when I collapsed due to having 2 wedge fractures in my vertebrae at T6 and T8. To cut a long story short, I am now very active again, able to attend the gym regularly and ride my mountain bike quite often.
Although the disease is not curable, being diagnosed with MM in the back is quite often treatable, and hopefully, he will regain his mobility given time. It is important that he tells his medical team all of the symptoms and how bad they are. I tried the ‘man up and get on with it’ routine, but that didn’t work, and I had to learn the hard way to tell them how it was and accept whatever help they could offer.
The main thing is to remember that some people live with this disease for a lot of years and go on to live full and fulfilling lives. Tell him to keep his chin up and stay positive. Please let us know how he is getting on.
Thanks, Tony
Hi Maria,
I am one of the forum volunteers. I am sorry to hear of your diagnosis, it comes totally out of the blue and completely as a shock to a lot of us, myself included. The good news is that whilst it is not a curable disease. it is treatable, and there are some very good drugs and regimes out there, and if you have one that doesn’t particularly suit you, then there are others to try.
I had a stem cell transplant 3 years ago, and since then I have not had any detectable cancer in my blood, and I am tested every 3 months. I hope that it will continue like that for a long time to come.
Please keep us informed as to how you are getting on, how you are feeling, and if there is any particular way in which we can support you. Everyone on here is either living with the disease, or is a carer for someone who is. We all want to help where we can, so if you want to know about personal experiences, or just someone to have a moan to about it, then thats what we are here for.
Stay positive and keep your chin up.
Regards, Tony
Hi Nick,
Thankyou for posting that, I am sure it would be very useful for those who are undecided about having SCT. It has to be a personal decision, but like you, I have no regrets about having it, I just wish someone had told me about the Melphalan and ice pops thing as I did suffer from mucositis.
Regards, Tony
Hi SuzieP
I am one of the forum volunteers. Please do not say you do not belong here because we are here to help you in any way we can, even if is just suspected that there is a possibility you might have MM. however, it sounds like the doctor wants to discount MM as a possible reason for your symptoms.
The main thing is to not worry about something to which you do not know the answer yet, although I know that is easier said than done. I know you said your GP has not got back to you so I think in the first instance you need to contact them to ask to discuss the results with the GP.
To answer your question about the results of the blood test, even healthy people have light chains, but they look at the ratio of kappa and lambda. They should have a ratio of roughly about 1 to 1. Yours are a bit out of that range, so I guess that they will keep an eye on them to see if there are any future changes. Your creatnine reading is good, and the GFR is a measure of how well your kidneys are working, and that’s not a bad reading either.
There is a condition called MGUS and it is a sort of pre-cursor to MM. They might be looking to see if you have that. The good news is that if you have MGUS, there is a good chance it will not progress to be full MM, and even if it does, you will be on their radar to make treatment available early on, which is good news as well.
Please try to not worry until you have got some answers. Let us know how you get on with your discussions wi th the GP.
Keep your chin up!
regards, Tony
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
