[VickiParticipant]

Hi all

Quick question and little worry bead! Colin has been off treatment now for about 8 weeks and overall he is reasonably well. He goes to work virtually all day for a couple of days a week and works from home. However he got really upset today because he felt so absolutely shattered, and when he tried to carry some shopping bags in felt really weak. He said his back (original back problem where no myeloma was discovered) seemed to be really sore at the moment.

He seems not to have a great deal of stamina, should he try to push himself a bit to build stamina up before hospital for SCT?

He had blood taken at hospital last week and they made no mention of mm rearing it's head or pps shooting up, but I wondered whether it was still normal to feel so tired even though not on treatment? Incidentally he had the radioactive! Kidney test yesterday. Would that make him fatigued?

Thanks for your help 🙂

[tomParticipant]

Hi Vicki and Colin

Well I had CTD then SCT in 09 was feeling weak and tired during and and even when having no treatment, even today I still get tired easy some days and some days I am spot on 🙂 dont get me wrong I cant do a run (dont think I ever could though he he)

Am sure if bloods are OK then Colin might be same as me and just plain old tired :-S

Love Tom "Onwards and Upwards" xxx

[MicheleParticipant]

Hi Vicki & Colin

I personally found my 6 cycles of CTD far more gruelling than the STC. In the weeks between finishing treatment and starting all the STC stuff I felt generally a lot better but did have sudden attacks of fatigue which I knew was to be expected. I think the thalidomide I was on must have acted as a sleeping pill too because as soon as I came off of it I had trouble getting to sleep at night. It was really noticable. I also had a lot of "restless leg syndrome" which drove me a bit mad!

That said, there's no doubt that if it's possible, do try and build yourself up for STC. I kept active and watched what I ate and it definitely put me in a good position to tackle the STC.

Colin, let Vicki carry the shopping bags for now. Don't be embarrassed about feeling a bit weak at this stage. She'll soon have you doing loads of jobs again when you've bounced back! 😉

Take Care
Michele xx

[DaiCroParticipant]

I only had 4 Cycles of CDT and they were not at all pleasant… but with a starting point of 3,500 Kappa Light chains cut to 0 nil, nothing, zilch after 3 Cycles I was enamoured with my treatment and determined to stick with it whatever the short term cost to my body and took up my mantra 'Whatever It Takes' which still abides to this day. We carried on with Cycle 4 to hammer it home and then started the procedures for my SCT. 😀

I was fatigued but I was also driven, almost obsessed… with the practicalities of my mantra… determining to be positive and not to allow any form of negativity to cross my threshold, however well meaning its form took… and the drive carried me forward. I felt great, my bloods said marginally Okay but my positivity carried me forward. 😎

Regards 🙂
Dai.

[HelenParticipant]

Hi Vicki
I finished induction treatment early June last year and had sct in mid august, ( nearly 1st anniversary, hurrah) my first posts on this site were when I was recovering from gcsf and induction and I was just beyond myself with fatigue. I only had 10 days, just before sct when I felt well. Those few days were really good and I'm probably now back at that point now, and have been for the last month. So don't despair, some of us are just slow at recovery. I burst into tirades of abuse at a box of photocopy paper last week, to my colleagues amusement thankfully, as I was unable to lift the thing due to intense pain in my upper arm muscles, totally unexpected, now I have to ask for help and it IS SO FRUSTRATING. Anyway as Michelle says, you have to carry the bags!
Love Helen

[VickiParticipant]

Hi all,

Thanks very much for your encouraging posts! And Helen…..happy first anniversary!

It's really good to hear from you guys that have been there. I did not realise that the fatigue would carry on, but then I suppose the blunt instrument of chemotherapy takes a bit of getting over. It has been quite a busy week as it was my mums special birthday so we'd arranged a surprise party (last night) and a meal last Tuesday which thankfully Colin has been able to come to. I suppose that and work can tire you out. Do you know what I would carry every shopping bag, cut every hedge, clean not stop…..as long as colins still here to enjoy it! I think like you say Helen he gets frustrated because he has been used to doing sport and being annoyingly good at it, being very active, lifting and shifting things…..and then down with a bump not being able to lift shopping bags. Easy for me to say I don't mind if he never lifts anything again, but it's all about Colin wanting to be 'back to normal'.

Thanks again to all……we should hear in the next couple of days whether those booster injections for the gcsf has been funded. Have a great weekend all, summer over we are having a huge thunderstorm here!

Vicki and Colin 🙂 🙂 🙂

[mhnevillParticipant]

Hi Vicki

I have only just finished six rounds of CDT, this week, and am not going on to SCT. I am feeling tired and a bit sicky. but at least food tastes better. I just wish I diidn't have some problems with my teeth which IU am getting sorted out.

I also have some pain in my back – where my myeloma also started. (I had to have a tumour removed.) My Consultant says that this pain is normal because of the thinning of the bones so I am going to talk to the Pain Specialist about increasing the daily dose of morphine.

Hope things go well for Colin.

Best wishes.

Mavis

[VickiParticipant]

Hi Mavis

Thanks for this. He seems to have perked up a bit over the last few days, and especially the last couple. It's hard not to think that every pain is myeloma isn't it! I wonder if that fear will ever go away! We are awaiting a hospital visit Monday to see what happens next. The original SCT was due this week but due to stem cell harvest first go failing we are waiting to see what plan b is.

I hope they soon get your teeth sorted so that you can enjoy the better tasting food!

Keep well 🙂

Vicki and Colin x

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