[keithmtParticipant]

Thanks you Eve, very kind of you

[keithmtParticipant]

Hi Carol,
It’s very interesting to hear your experience and comforting that what I’m experiencing is fairly “normal”. I had a similar experience with my last employer but over a different illness. I know it’s a tough call and they have to be consistent and consider employment contracts but when someone has been very I’ll it seems very harsh to start chopping their income.

I had my stem cell collection today which all went very well and they confirmed they had more than enough to start my transplant from next Monday. That’s really good news for me.

Keith

[keithmtParticipant]

Finally ……. My story, albeit in 2 chunks, seems to be there. I have no idea what went wrong, there seem to be many other longer posts than this so any hints would be helpful.

Thanks

Keith

[keithmtParticipant]

Before I finally give up on trying to post my story, one final attempt at adding what’s been chopped off.

A second biopsy confirmed that I am ready for SCT and I am referred to the Royal Marsden. By the way, my paraprotein level had dropped as follows during my 6 months CDT…. 57 33 21 15 8 4 2.

Mar 2014
Had my cyclophosphamide chemo just over a week ago as part of the SCT mobilisation process and started 2 x G-CSF injections a day 4 days ago. Although the injections are virtually pain free I’ve been struggling more and more to do them. My brain is screaming at me that it’s just not natural to stick a needle in me. Stupid eh?
Until last night I’ve had no side effects from these injections but I’ve had a really rough night with chest and back pain. At least it’s a sign (I hope) that they’re working.

So, as of now, I have one more jabs session tonight and then I go in for my collection tomorrow. I really really hope that this all gets done by Monday eve but I’m prepared for that not to be the case and I’ll need to go back.

Just for info, since coming to the end of my CDT cycles, my bitter taste has almost gone but my lack of appetite and energy continue.

I must say that I’ve found this forum really useful during my “journey” and you all seem such a kind and helpful bunch of people.

Take care and stay safe ….. one day at a time eh?

[keithmtParticipant]

OK, this is ticking me off now…….

I’ve just written it all again and the same has happened. I’ve just realised it may be my smilies that are corrupting it. Luckily remembered to save it this time.

I might try and do a complete new post and remove the smilies.

If you want to respond, please do so on version 2.

Keith

[keithmtParticipant]

OK, second attempt to complete my story…….

Feb 2014
A second biopsy (I really don’t like these

[keithmtParticipant]

Err…… Why has my post just been chopped off when I submitted it ?????????

What a pain, I’ll have to try again ….. Grrrrrr

[keithmtParticipant]

Doesn’t look like my link to the site worked so here it is in plain text

http://chemocookeryclub.com

Keith

[keithmtParticipant]

I was also diagnosed in August, triggered by strange pins and needles in my lower legs and feet. Apart from that I have no other classic symptom of MM so I lucky that they’ve caught it early.

My PN in my feet is still there but it’s manageable. Strangely, my feet are worse in bed when my feet are hot.

My treatment is CTD so I’m on Cyclophosphamide. My para-protein levels have dropped from an initial 57 to 33 to 21 so things are going in the right direction. I’m just coming towards the end of my 3rd monthly cycle and the consultant reckons I may need 6 before I’m ready for Stem Cell Transplant. I hope you manage to get yours done in December.

Good luck

Keith

[keithmtParticipant]

I was diagnosed with MM a few weeks ago and started my first 28 day CTD cycle a week ago. Within 24 hours I started hicupping and continued for 5 days non stop! I saw my consultant on Friday (when they had temporarily stopped) and he has told me to lay off the steroids for the rest of this cycle. Unfortunately I'm still getting them sporadically so will have to see how things are by Monday. Good to know I'm not alone with this.

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