Vicki replied to the topic A BIG Hello in the forum Newcomers 12 years, 2 months ago
Hi Amanda and bob
Welcome, you are right. This is a very supportive helpful place. It has been godsend to Colin and I. Colin was diagnosed with MM October 2011. Until then we had never heard of the condition. Others experience and knowledge has helped us no end.
Good luck with the treatment x
Vicki and Colin 🙂
Vicki replied to the topic second Sct – funding in the forum Treatment 12 years, 2 months ago
Hi Mari,
Good to hear from you…..I was wondering what was happening. I assumed Stephen had already gone in and praps you did not have time to post! This waiting game is really hard isn't it, for all concerned. I hope all goes well. Colins new date is 24/9 as long as the harvest works this time…..Monday coming, so fingers crossed.
Hope…[Read more]
Vicki replied to the topic Plasmacytoma – looking for good news in the forum Newcomers 12 years, 2 months ago
Hi Charlotte
My partner Colin has mm, diagnosed last october 201-. He had a vertebrae fractur at t12 on his spine, they did radiotherapy. Is that the same as a plasmacytoma? He did not have any other lesions. He had 7 cycles of cyclophos. Dex and revlimid, and is now waiting for SCT. His pps went down to zero and light chains were 700 which…[Read more]
Vicki replied to the topic Feeling Useless in the forum Newcomers 12 years, 2 months ago
Blimey Maxine,
When I read your post I felt so sad for your sister and you and the rest of the family. The mm thing is clearly no respecter of age…..when I first read up on it I thought Colin was young to have this at 55, but wow there are many many younger patients. I can understand the shock and trying to come to terms with.
Our thoughts…[Read more]
Vicki replied to the topic Good News in the forum General 12 years, 2 months ago
Result eve and slim,
Thanks for the encouragement too!. Wot you two waiting for…..get off on that cruise and treat yourselves to something special. Enjoy 🙂
Vicki and Colin
Vicki replied to the topic SCT… update in the forum Treatment 12 years, 2 months ago
Hi Craig and etta,
Hope all is going well and those cells are starting to improve! Hope the d &v are also reducing. I found Ali's posts about her mum really helpful, planning ahead and realising we are all in is together.
Look after yourself too Craig as etta will need tlc when she comes home, and it's not good if you are shattered too! ,…[Read more]
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Hi Dai
Thanks for your good wishes. Hope those gcsfs are starting to work. I thought of you when we were at the hospital last Monday……one in the hope your virus was sorted, and secondly when they told us they would not fund those prelixfor? Injections….Colin had to have the toxic cyclo prime!. This was our first experience of postcode…[Read more]
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Tom,Ali,
Know what you mean….I worry if I think I am not worrying!, then start asking myself am I immune to this worry, got used to this mm thing? (never!). That said I can't imagine we'll ever be the same. Last night Colin was looking out of the window and there was a plane vapour trail. He asked whether I thought we'd ever go on holiday/on…[Read more]
Vicki replied to the topic My Mums SCT in the forum Treatment 12 years, 2 months ago
Hi Helen
Sorry to hear about your neighbour. Very sad. A similar thing happened to one of our friends 12 months ago and it has taken some time to get our heads around, certainly his wife!
On a happier note very pleased to hear you are back at work full time, even though boring and with wobbles…..that is progress?
This mm thing really…[Read more]
Vicki replied to the topic Radiotherapy in the forum Treatment 12 years, 2 months ago
Hi gill,
Hope that the radiotherapy has helped Stephens back. Colin had only one large dose of radio at the beginning. They warned us about burns and gave us some cream that I had to rub in every day. The burn has gone but like outdoors Paul there is a patch of brown skin about 3cm x 3cm. Seemed to do the trick so is well worth the scar….
Vicki 🙂
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Thanks all,
Colin has just had day 2……and no pain yet! Come on you stem cells or my worry beads will be out soon!.
He seems a lot brighter, more perky, eating well and has been to work today. Glad you mentioned when the pain might come.me being me, wondered why it did not come about 10 seconds after the first injection LOL.
I had a…[Read more]
Vicki replied to the topic My Mums SCT in the forum Treatment 12 years, 2 months ago
Hi Ali,
Great news, your mum seems to be doing great…..and glad to hear slow but sure progress. With of course a little bit of resting in between…. At least the weather is quite mild now, so hopefully there aren't too many about. I've got this image of you being surrounded by ironing and the kids up to their ears in jelly beans! Result for…[Read more]
Vicki replied to the topic Hello in the forum Newcomers 12 years, 2 months ago
Hi Megan and Phil
Sorry you had to join the club but welcome anyway. My partner Colin was diagnosed age 55, so older than Phil but the shocked was like a train hitting us!. Colin had back pain and a random blood test revealed the worst case scenario. We did not even know this mm thing existed, and frightened ourselves silly with all the other…[Read more]
Vicki replied to the topic Diagnosed this week in the forum Newcomers 12 years, 2 months ago
Hi ted,
Great news for you….keep that mm at bay.
Hi Kevin and ange, my partner Colin was diagnosed October 2011 and as I have said many times a complete bolt out of the blue. I still find it hard to come to terms with sometimes, and colins the one with mm!. That said the hospital staff at Glos royal have been great. There is no doubt that…[Read more]
Vicki replied to the topic Positive News I Think!!! in the forum Treatment 12 years, 2 months ago
Hi Keith,
That all looks like good news to me, the bloods are down so the treatments working. I hope they can sort the sugars out. My uncle had type two diabetes (not myeloma related thank goodness) but he controlled his with diet. Hope this can work out for you too.
Vicki and Colin x
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Hi Ali, Tom
Hey you are right Ali, in the end my uncle called in and somehow he managed to take over a bit and gave me a hand! I ended up being more of the labourer and tea maker, however still managed to get paint on my trousers, hands and oh on my ear!
Yes gcsfs start this evening, there aren't many times I hope for Colin to have pain but…[Read more]
Vicki replied to the topic My Mums SCT in the forum Treatment 12 years, 2 months ago
Ali,
That sounds very positive progress for your mum. Glad to hear she has got out a bit. That must be very heartening for your mum as well as the rest of the family. Your mums sounds like a real trooper. You must all be very proud of her 🙂
Vicki and Colin
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Hi Tom,
Thanks that's reassuring to know…..and glad your still on top form. I have shared these posts with Colin and he has felt more positive too. He has felt a bit better today, 🙂 despite the weather! And overall an improvement. I hope Colin has had the can't be assed moment, or maybe that's post SCT and then feeling good clicks into…[Read more]
Vicki replied to the topic Colin SCT plan b! in the forum Treatment 12 years, 2 months ago
Thanks Eliz,
It has been quite a tough couple of days. Colin felt really poorly yesterday, sick, tired and I think really generally fed up of feeling I'll. Today he looked a bit better but has been very very emotional. I do wonder whether it was a reaction to Friday, or maybe the drugs. I hate to see him upset and feel really helpless that I…[Read more]
Vicki replied to the topic New to this in the forum Newcomers 12 years, 2 months ago
Hi jacqui,
We live in the forest of Dean. My partner colin was diagnosed age 55. We go to GRH for appointments. Colin is on myeloma 11 trial. He had 7 cycles of cyclophosphamide, dexamethasone and revlimid. The dex made him feel emotial, a bit moody and he had real problems sleeping. He did not mention tingling or anything, he did feel very…[Read more]