Hi Sharon, glad you’re looking for a weekend break – as time went on I “treated” myself each day – nothing major maybe making the effort to meet for a coffee etc. This is a hard time (understatement) so always be kind to yourself. I think it’s also worth recognising as being newly diagnosed you have all the emotional toll of that – which would…[Read more]

Hi Sharon, I was 50 when diagnosed and have stge 4 kidney damage. I was on velcade/dex for 8 months pre SCT. Dex was all the things you say but I had only had dex once a week so had time to recover from it for a bit each week – I hardly slept at first but used to work nights so can function on very little sleep and my consultant said my kidney…[Read more]

Signed. I hope you get good result. Best of luck.

susie

Hi Linda, I had my SCT at Xmas (literally) at St James (really hated the food and the freezing room) and it never really did much more for me MRD was the same as before at .3% etc. I was in very good partial remission hoping the SCT would get me SCR but the gamble didn’t work. I wasn’t on a trial so ineligible for maintenance but discussed…[Read more]

Tom, sorry I have no advice and sorry it’s back – guess all I would say is regroup mentally and prepare for the next round – were you on maintenance also?. 9 months post SCT and think my figures are not as good as could be but not alarming. I have started a meditation/mindfulness course as I feel I was strong during treatment/SCT, but do not feel…[Read more]

Hi Gary

thanks for your reply and all the info you gave me. It sure helps to hear other peoples reactions to all these drugs. I wait to get a build up of side effects but I do hope I don’t have to approach your 22 cycles.

I wish you the best

Susie x

Hi Gary
Thanks very much for your info. Its good to know I’m not unusual in what I was feeling. It was just so scary to feel like that when I hadn’t been warned, but I’m ok now.
I was already on Lansoprozole for hiatus hernia but I didn’t know if I could take some Gaviscon, which I can.
You say to take the cyclophosphamide after food but I was…[Read more]

Hi Gary
By the time yesterday evening came I felt absolutely awful. I’d had a peculiar headache all day, I looked totally dreadful, and felt it too. Didn’t think I would feel so bad on the first day. The CNS told me I wouldn’t feel side effects for about a week. I spoke to my CNS today who told me I can take paracetamol and Gaviscon for the…[Read more]

Hi Gary

Thanks for your reply. It quite cheered me up.
I started my treatment this morning. I think I’ve taken 26 tablets, I’m puzzled why the tablets are so small strength, meaning I took 10 Dex (2mg) and 10 cyclo (50mg), weird. at least tomorrow I don’t take the cyclophosphamide. I’ve carried on as normal plus drinking like a fish, washing…[Read more]

Hi
Well I went for my last pre drugs consult and to collect the drugs as well as having the CNS explain everything. I can’t remember half of what she said and am totally gobsmacked by the drugs they have given me. How people get their heads round it I don’t know, I’m still trying to put together some sort of chart so I know what to take and…[Read more]

Hi Karen

I’m sorry to hear the problems you are having getting a diagnosis. Its so worrying I know.

What is your paraprotein and have they done a bone marrow. All I can say is what was told to me and that is, if the cytoma wasn’t there I too would be a watch and wait but shorter monitoring periods.
Where did you get your second opinion…[Read more]

Hi Mike

Thank you for your reply. My MRI had been reported on by a Neuroradiologist saying I had a herniated disc, several compressed discs, and an L1 compression fracture, but from the sacral bones down, “all was normal”. That gives a person confidence when a few weeks later my haemo consultant tells me I have a Plasmacytoma the size of a…[Read more]

Thanx Ali, have just ordered some off ebay – am a bit loathe to cut what l ittle I have but will bite the bullet to get rid of this tight perm look. Rebecca

Dear Eve, so sorry to hear this news, you are both troupers and I hope you take great comfort in the knowledge that you could not have done more for him and eased his passing so fantastically well. You have helped so many on here with your postings, including myself, that please do not feel you can no longer contribute on here as you have a…[Read more]

Ha ha – yes some vain people will try anything – but it doesn’t do much for the hair. Walking outside sounds fabulously healthy but entering a shop ? maybe meeting strangers/germs! and hope you wasn’t thinking of buying a paper and touching dirty germy money?! hasn’t your wife took it all off you yet as it’s not good for you? Walking outside is…[Read more]

Hi Stanley, good to hear your still in one piece tho’ no doubt a bit slimmer! The memory of it all goes very quickly but reading your post reminded me of how dire constant nausea is – I hated the mornings when they made me move out of bed to make it as any little movement seemed to trigger off sickness – nausea never went at all. Don’t know how…[Read more]

HI, just type in Deborah bone blog in google and it’ll take you straight there

Hi there and sorry you’re here but what’s done is done and you can only look forward now. I thought it was a cruel blow being diagnosed at 50 but at you’re age it just beggars belief. At Leeds I was told their youngest patient was in their twenties and contrary to what you may think getting it younger does not mean it is anymore aggressive it’s…[Read more]

Hi, you may find Deborah Bones blog interesting as she has had dt-pace quickly followed by a recent SCT and you may find it useful/comforting that she is coming through it all OK tho it hasn’t been a walk in the park,Fingers crossed.

Hi Mavis,
I have decided not to do the antibiotic trial. I researched the drug and the side effects/interactions are beyond belief. I know its probable I wouldn’t get them, but the risk is there and I don’t want that risk. I’ll have side effects of my treatment to contend with which is enough.
Bye the way, they wouldn’t stop shingles coz that’s…[Read more]