Well done Fred, an inspiration to all those who are suffering and wondering what the future holds. Stories such as these give hope.
Regards, Tony
Hi there,
I took an an Alexa in with me as the hospital had free wifi, which kept me company during the day, and sometimes during the night when I could not sleep. I suffered a lot from Mucosytis, but as I had my own fridge, I had ice pops and ice cream which were great at soothing it.
If you do get Mucosytis, avoid anything acidic as it will probably be very painful in your mouth.
If you have free wifi, take a laptop or a tablet in with you so that you can while away the hours browsing, or connecting with family on Zoom etc.
Regards, Tony
Hi there,
Have you explained to your medical team the amount of pain he is in? They can refer him if necessary to a pain relief clinic, or prescribe stronger drugs such as Oramorph. However, if he also has kidney damage due to the Myeloma, some drugs can be harmful, but there are good alternatives available (such as Oxynorm instead of Oramorph), but make sure to tell those who are prescribing them if you have any other underlying medical conditions.
Regards, Tony
Bone pain is very common post STC, but is manageable if you get on the correct pain relief regime. Tell your medical team about the pain you are in and the difficulties you are having. Be aware though that if you also have kidney disease as a result of the Myeloma, some drugs (such as Oramorph and Ibrufen) can be harmful to them, but the good news is that there are alternatives that are not harmful, but not routinely prescribed unless there is a need.
Regards, Tony
Hi there,
My Myeloma diagnosis came as a result of severe back pain as I had 2 vertebral wedge fractures in the thoracic region of my spine. I understand what pain he must be in, but they will probably put him through a pain management clinic to find the correct level of pain control. after which it should be a bit more manageable.
The additional problem I had was that Myeloa had given me kidney failure for which I needed dialysis. Oromorph is a prevalent form of pain relief for bone pain but is harmful to Kidneys if you already have problems with them. Therefore you need to know if his kidneys have been affected. If so, there are a range of drugs that can further damage them (such as ibuprofen and Diclofenac) and you must tell anyone prescribing the drugs about any possible damage to your kidneys. There are alternative drugs available (such as Oxynorm instead of Oromorph) but these are not routinely prescribed unless there is a need.
However, good pain relief is available so long as you let your medical team know about it. Don’t be shy about asking for help. Hope this helps.
Regards, Tony
Hi Hall24,
I had SCT over 3 and a half years ago. It is not a pleasant process, but I have been cancer free since then, so any short-term side effects have been worth enduring in the long run for me. The main problem for me was the mucositis caused by the Melphalan Chemo. I had a fridge in my room and kept Ice cream and smooth yogurts in there as they soothed my mouth and throat, and at least got something inside of me as I could not actually face eating anything, and they just slide down. I also took an Alexa with me so I could have my own music, and I also took a Firestick with me so I could watch films to pass the time.
A bit of advice I have heard of from several people is sucking ice cubes for 30 minutes before and after the Melphalan injection as apparently, this reduces the mucositis. I only heard about it after my SCT, so I cannot personally say it works, but if I had to have SCT again, I would try it as I can’t see it doing any harm.
Hope this helps, regards Tony
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
