[tony642Moderator]

You would have to discuss that with the medical team. Dexamethazone can have some unpleasant side effects, and quite possibly they would be worse for someone of your Dad’s age, so whilst wanting to give him treatment, it might be a balance of what is best for him without giving him additional problems.

Regards, Tony

[tony642Moderator]

Hi Dahlia,

I came out of remission last year, I was put on Dexamethazone, Carfilzimib and Lenolidamide for about 9 months, and I suffered with inflamed bronchial tubes as a result. After the cancer markers were found to be considerably reduced, I am now just on a maintenance dose of Lenolidamide. I am suffering very few side effects and am in a good place both physically and mentally at the moment, keep your chin up, you don’t know what might be around the corner!

[tony642Moderator]

Hi Cath,

A couple of months ago I went back on to Chemo after a 3 year remission. I found it tough at first, but as time went on, the impact reduced. I don’t know if I was building up a tolerance to it, or if my body was just getting used to it, but now it doesn’t bother me as much. The usual side effects are still there, they are just not as significant as before. Stick with it and hopefully, the severity will reduce, but as always, if you have any concerns, please discuss them with your medical team.

regards, Tony

Forum volunteer and peer buddy

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

[tony642Moderator]

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

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