Hi Izzy,

I’m now 44 days post SCT and feeling much more like my old self. As Rebecca said, Melphalan kicked in 5 days after having it and probably got slightly worse for a further 4 days. Then the climb out starts although it’s taken a few weeks. I remember well that the 2 days post SCT I felt like a new person, it was amazing, hope you get the…[Read more]

Hi Karen,

Like you, I was astounded at how much medical detail people on this forum had about their situation. Light chains and all sorts of other things I’d never heard of or been connected to. The only number I was connected with from the start was my paraprotein level which my consultant told me about at the end of each monthly drug cycle and…[Read more]

Just an update at day 40 after transplant. My appetite still hasn’t put in an appearance but I am eating more and enjoying it more, even if I don’t feel hungry. My bloods seem to be recovering (as far as I can tell) with my white blood cells up to 11.2, platelets up to 235 and neutrophils up to 4.77. I have no idea how these numbers relate to…[Read more]

Great advice as always from Rebecca. When I was diagnosed I as also asymptomatic but my paraprotein levels were at a level (57) where my Myeloma was active and I was put on treatment (CDT) straight away. So it doesn’t feel like they wait until damage starts to appear until they start treatment, at least, not in my case.

Thoughts are with you as…[Read more]

Hi Carol,

I’m 29 days post SCT and am taking antibiotics 3 times a week, antiviral daily and antifungal daily. I’ve been told to wean myself off the antisickness so am just taking one tablet a day now until next week when I’ll stop altogether.

I understand that at some point I’ll go back to monthly Zometa.

Cheers

Keith

Hi Stanley,

I’ve lost 4kg since my transplant and 13kg since diagnosis last August. I suppose I’m lucky that I had that weight to lose so it’s brought me back down to my “normal” weight. Having said that, I’m sure I’ve lost quite a bit of muscle as well as fat so as I get fitter I assume a couple of kilos will creep back on.

Hi Rebecca,

Yes,…[Read more]

So, here I am, 26 days post transplant, swollen mouth gone, sore throat gone, and diarrhoea gone. However, still little appetite but I am trying to eat some protein in an effort to stop myself wasting away. Seem to be dropping weight still. I’m also getting out for some walks around the village to try and build some strength.

Otherwise all good…[Read more]

Sorry you find yourself here Graeme but it is a great source of info and kindness. I’m 63, diagnosed Aug 2013 and put on CDT. Like you, I had hiccups, in fact very bad hiccups, so they halved my steroids for the remaining 5 cycles. I still got hiccups but much more manageable.

The best of luck on your journey. Just remember, one day at a…[Read more]

Hi Stanley,

When my SCT process started, the hospital coordinator explained that I’d need to be admitted for between 2-3 weeks after my Melphalan chemo. She said that because the effects of the chemo wouldn’t kick in for a few days (as indeed they didn’t) I could choose to stay at home rather than sit in hospital feeling perfectly well. They…[Read more]

Sounds like you’ve had a really rough ride and my thoughts go out to you.

I’ve just had my SCT so I’m hoping that I’m on a road to some sort of recovery. As for pins and needles in the feet, that’s exactly how my MM was diagnosed. I think a lot of people get these sensations as a consequence of the treatment but for some of us, it’s part of the…[Read more]

I had my post SCT review 3 days ago and apparently the transplant has taken. Cells have grafted to my bones and have rebuilt my bone marrow. My neutrophils are already back to “normal” levels so I’m all set to climb out of the after effects of the Melphalan which can’t come quick enough. Still no appetite and feeling tired but each day I think…[Read more]

That’s good news Izzie, I had my SCT 19 days ago and remember well how great I felt for the 2 days following. I had my post SCT review 3 days ago and apparently the transplant has taken. Cells have grafted to my bones and have rebuilt my bone marrow. My neutrophils are already back to “normal” levels so I’m all set to climb out of the after…[Read more]

Sorry to have dropped off the radar for a while. My time in hospital post-SCT was much harder than I had expected.

I felt very unwell at times with a swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. For reasons unknown I had my dreaded hiccups back (normally comes…[Read more]

Like others, I am so very sorry to hear of your wife’s problems.

I had my SCT 14 days ago and was very pleased to be in hospital as I felt very unwell at times. Swollen mouth (but not sore), very sore throat and oesophagus meant I couldn’t eat and diarrhoea meant I didn’t feel like eating. I’ve been home 3 days now and although I still have no…[Read more]

Dear Mandy,

I’m sure we are all touched by your situation and your tough choices. Faced with the same I can’t even imagine what I’d do but I know I’d consider the views of the specialists and my family, as I’m sure you are.

My thoughts, hopes and prayers are with you.

Kind regards

Keith

Three days post S cT and feeling pretty low at the moment with a swollen mouth and throat (not sore), zero appetite (Carole’s right, can’t stand the look of food at the moment), very tired as well and occasional tummy troubles.

I took the option of staying home during the first of my 3 weeks post SCT and I’m trying to avoid giving in and turning…[Read more]

Hi John

I had my SCT 3 days ago, preceded the previous day by Melphalan. Feeling pretty low at the moment with a swollen mouth (not sore), zero appetite (Carole’s right, can’t stand the look of food at the moment), very tired as well.

I took the option of staying home during the first of my 3 weeks post SCT and I’m trying to avoid giving in and…[Read more]

Thanks Jane, I’ve sent my wife out for ice-pops as I’ve woken with a slightly swollen mouth. I thinks she’s pleased to get out of the house and the smell of the jolly green giant, ho ho ho. Strange, I can’t smell it at all.

So, the transplant seemed to go well yesterday and I had a good solid nights sleep. Hiccups were a problems yesterday…[Read more]