[strictlymyelomaParticipant]

havn't been on site for a while now although have read all
last consultation at local hospital SCT and Valcade was mentioned as Revlimid worked well first 4 cycles now levelled out at 18
so will be trying Valcade in an attempt too lower PP's further, prior to SCT at a london hospital
can my fellow sufferers let me know which london hospitals they attended for their SCT's ?(as there appear to be different ones) and were you able to use laptops ? and how bad or good was the SCT proceedure, can u get your own food in as i need strong tasting food, Cakes, sweets, Etc when taste buds are playing me up?
norman

[GayeParticipant]

Dear Norman – I had both my SCTs at Barts in London and food was actually the last thing on my mind! Yes, you can use yor laptop but I can't say whether Barts is better or worse than other hospitals doing SCTs as I have only been to Barts. I am sure they are all much the same so please don't worry too much about it. It is not a complex procedure – the thought of it is probably worse than the transplant, so just go for it!

Good luck Norman.
Gaye

[PerkymiteParticipant]

Hi Norman, Read my "Musings from ward 9". It is on page three of the Treatments section. It wil give you a good idea of the basic process and I am sure will answer most if not all you questions.
Best of luck

Kindest regards

David

[brochoParticipant]

Hi Norman I had my sct at UCH London , the team is led by Dr Kwee Yong who is pretty well known in the myeloma world Food was pretty much what you would expect but you are in your own room so wouldnt disturb anyone one with your own grub Macdonalds over the road and major supermarkets 2 minutes away I used my laptop with a dongle no problemswith mobile either. Mind you your appetite is probably not going to be great ! UCH uses a hotel over the road for the beginnning of your treatment, you and your partner stay in the hotel and go to the day unit for stem cell return and monitoring, until you need to go into a ward . Excellent scheme means you are not stuck in a hospital bed waiting to feel ill , but as soon as you need to go in there is a bed for you There are 24 hour numbers to contact the ward and an alarm in your room Good luck when are you likely to be having your sct? love Bridget x

[GillParticipant]

Hi Norman

Stephen (husband with mm) had his SCT at Kings College in south London. They were great he has to go back in for a further SCT and this time he wants to try and organise a daily newspaper as he really missed it.

The food was the usual c**p and the big mistake was that he wasn't offered a neutropenic diet. Mind you he did not want to eat and I took up things he might consider. He had his own mini fridge so could keep the bits I took up. Good gracious what a trudge it was from Denmark Hill station to kings with a bag of goodies covered in heavy ice packs and loads of bottled water!!

It is a pity that the webteam have not archived the stuff from the old site. I wrote a sort of blog/diary when Stehen was in Kings and, even if I say it myself, I know that some people found it really useful.

Best of luck Gillxx

[GillParticipant]

PS site would not let me type the poo poo word hence the stars

[DebsParticipant]

Hi Norman,

Sorry to hear that you have levelled out on Revlimid. I thought you might be interested to know that the same seems to have happened with me. 4 cycles in, and after an initial drop from 50 to 32, a second drop to 27, I have now gone back up to 28 and it looks like I will also be going onto velcade (or coming off the Myeloma XI trial as there's no way I'm having a transplant yet!)

Maybe Revlimid as induction therapy isn't as good as it seems. Have you heard of anyone who has responded well to it?

Sorry can't help with regard to SCT info yet.

Take care
Debs x

[strictlymyelomaParticipant]

hello all
thankyou all for the comments and info, bridget it looks like i would be going to UCL hospital also so info was helpfull if and when i decide to go down the SCT route
the advise from my consultant is that i will have to agree SCT or i will not be able to have it later?? if i stay with the revlimid, this i dont understand!!!have made arrangements to discuss with my specialist nurse tomorrow after i have seen the consultant
reckon i will have to go onto valcade as latest results of PP are only a difference of .3 from last so am at 18.6
Debs im sorry u appear to be having the same problem
I was diagnosed june of last year i was put on the non evasive treatment apparently they thought i couldnt take the invasive because of the more severe side effect now my consultant appears to have changed his mind so obviously i look better although i dont feel any different personaly take care will come back on when haven seen consultant and nurse
norman

[KeithH17Participant]

Hi Norman,all I would say is forget about food as you won't even want to look at it let alone eat any once the Melphalan takes hold.
What I would advise is that you suck icecubes for 20,mins before and after the Melphalan is infused (this is vital).
I had my sct at the RVI Newcastle so it's not going to be any help to you but just for the record it was excellent as I'm sure they all are.
I'm up for a second transplant sometime this year once the Velcade has done it's stuff.

Good luck…Keith.

[RobertaParticipant]

Hi Norman, I had my SCT at Hammersmith Hospital in London in Sept 2010. I could use my laptop but sometimes it was hard to get a signal from their wi fi. The food wasn't very good but family are allowed to bring you in what you like, obviously the food has to be fresh, I was given details about that before admission. The care I got was good but sometimes I did feel that some of the agency nurses were not so good. The Doctors were excellent. You have you own room and that was okay, it had a telly and a music system. I had velcade before my sct and it worked for me very well. Best of luck with everything. I don't often post on here but I do read and hope to be of help to others in the future. Best wishes, Roberta

[ElizellenParticipant]

I second the ice cubes trick!!

I had my SCT at Bournemouth hospital and the nurses there had a stash of ice pops and lollies which they made me suck continuously over the whole infusion period.

AS I don't eat sweetened things on the whole it felt a bit weird to eat all those sugars (half a dozen ice pops plus about the same quantity of lollies) but I had no painful effects either in my mouth or down my gastric tract, not even needing those unscented baby wipes we were warned I would need instead of toilet paper!!

[Author]

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