[keithmtParticipant]

Oops. Just realised my post yesterday said “day 40” when it should have said 50. I’ve changed it now. Obviously my brain isn’t firing on all cylinders yet :))

[keithmtParticipant]

So, on day 50 after STC I realise that the past week I have finally climbed out of most side effects. Appetite is back, taste is back, finger/toe nails are growing with a vengeance, some facial hair is starting to grow back. Physically I can do more but still have big limitations of strength and stamina but I’m sure this will improve with time and effort. My only residual issue is the continued pins and needles in my lower legs and feet but I hope that in time these subside.

It’s great to be feeling like “me” again and all I need to do is get my biopsy done in early July and find out if I’m in remission. That’ll be a nervous time.

As I’ve said before, I’m hugely thankful that I seem to have gone through this with far less impact than a number of other people on the forum and just hope that others who read this can see that it is possible.

My sincere thanks to all of you who have posted such positive comments.

Keith

• This reply was modified 10 years, 5 months ago by  keithmt.

[keithmtParticipant]

Well, that’s kind of you to say. To be honest, I bought the Stag in December 2013 as I knew I needed a focus to get to the other side of my treatment and it seems to have done the trick.

I wasn’t aware that Ace Cafe did car events but I’ve just seen that they have a Triumph event in June. It’s a bit of a hike from Hampshire but I might just go.

A Triple Speed eh? That’s one monster of a bike …….. I really hope you can get out on it, I’m sure you can.

Best wishes

Keith

[keithmtParticipant]

No “S” on my chest Mike I’m afraid, at times I felt like a complete wimp. I feel very fortunate that I’ve climbed out of SCT so relatively quickly and perfect timing to take the Stag out in this perfect weather. She’s just been through a lot as well ….. full re spray, new engine and various bits, I love her !

Keith

[keithmtParticipant]

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 same buzz.

I was told to expect to be in hospital for around 2 weeks and they kicked me out after 6 days, but of course, everyone’s different.

Good luck to you on this next part of the journey, it’s where things start to turn a corner and your trace of paraproteins (mine was 4 at SCT) sets you up really well for remission. Fingers crossed for you.

All the best

Keith

[keithmtParticipant]

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 I found it very motivating to know they were dropping each time. Not sure how I would have felt if they weren’t dropping though.

Like Rebecca, when I was in hospital post SCT I was keen to know how my bloods and immune system were recovering and the nurses printed out the full month of my daily tests.

As Rebecca said, it’s important not to get too hung up about numbers but having said that, I think it’s one thing we can track so it’s difficult not to get attached to them.

Keith x

[keithmtParticipant]

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 “normal” levels but they are all up significantly since my SCT.

Keep well.

Keith

[keithmtParticipant]

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 you start your journey.

Kind regards

Keith

[keithmtParticipant]

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

[keithmtParticipant]

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, I had the Fortijuice in hospital, not my favourite pint 🙂 the most palatable was black currant and I took some home when I was discharged. In fact, I’m drinking one now. I add a carton of Ribena and throw in some ice to keep it cold and I might get through this in a day. I can’t imagine what the milky ones are like but to each their own.

Cheers

Keith

[keithmtParticipant]

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 I think; another blood test at the Royal Marsden this week.

My best to everyone.

Keith

[keithmtParticipant]

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 time.

Kind regards

Keith

[keithmtParticipant]

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 kept a bed allocated to me during this time so that if I felt unwell then I could just come in. I had my Melphalan on the Monday and was very ready to be in hospital by the following Sunday.

Obviously this is my experience at the a Royal Marsden in Sutton, Surrey so I have no idea if this is standard practice or something unique to RM.

Keep well Stanley and good luck.

Keith

[keithmtParticipant]

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 symptoms.

My best wishes for the future.

Keith

[keithmtParticipant]

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 I’m feeling a degree stronger.

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