Hi Alison,

All ok with us, just waiting for revised dates and whether the booster injection for gcsf will be available, sorry your mum is feeling sick, that's the one thing that colins dreading. Glad to hear she has been able to eat a bit though. I suppose now she is on the treadmill called the SCT things will go up and down like a yo…[Read more]

Hi ann and peter,

Really glad that petered is feeling good at the moment. O I know what you mean, Colin is good at the moment too and you can almost get caught out and forget this mm thing!, until a temperature crops up, or time for tablets……

We have heard from the hospital and they are looking to try to get funding for the drug…[Read more]

Hi Paul

How's it going?

Vicki and Colin

Hi Alison

Hope your mum is doing well. Have been thinking about it all week. I hope she will get through it with minimum problems. In a funny sort of way we want colins to come forward and then we don't. Keep us posted if you can.

Good luck 🙂 🙂

Vicki and Colin x

Hi Charlie

Glad you chose the trial and best of luck with it. Remember keep positive. I am sure that none of our friends on here who are sufferers do not want it and neither do we as the partners. It is definitely a whole new lifestyle and learning to get a grip of it! No easy and won't be,but go for stand keep your chin up

Vicki and Colin x

Glad to hear things are on the up Eve, enjoy the holiday!

Vicki and Colin x

Dai,

It does appear to be a bit of a post code lottery! Colins first attempt at harvest, like Chris' failed. He has not been offered,nor was it even mentioned about the option of the prefelixor (sorry spelling!).in fact when I mentioned in to our consultant during the conversation about the harvest she told us it was not available in the south…[Read more]

Good luck for tomorrow Charlie,

See our post in the sting above. Michelles post is very upbeat and it has given us some heart here as well.

This mm thing, if it can't be beat is here to be tamed!. Our catch phrase is failure is not an option so go for it Charlie!

Vicki and Colin x

Chris,

Do not be disheartened! That is exactly what happened to Colin as well. Day 1 we wnt and his count was 5. There was a man there, not sure what he had but his count was less than 1!. Day 2 we went and colins count had only risen to 7, so that was first attempt failed.

We understood from the nurse and the doctor that this is a very…[Read more]

Hi all,

Thanks for the encouragement. We are a lot calmer now.

Ali, thanks for the information,that's good to know. With regard to the cycloprime, did your mums hair just fall out or was it a gradual thing where it calm out a handful at a time. It would be useful to know so that I can prepare Colin or cut his hair ha ha! That's a useful tip…[Read more]

Hello pennie and 'batter boy',

I have read your posts with interest. I can't be of great help to you, but you have both been a help to us.

My partner Colin was diagnosed in October 2011, age 55 and has now following treatment awaiting an SCT sometime in the next month. When he was diagnosed we were so concerned about the prognosis we had…[Read more]

Hello chris,

Good luck to you. My partner Colin was diagnosed with mm last October and is now waiting for SCT. Last week we went for stem cell harvest at south mead too. Colin did not have cyclopriming, and the first go did not work. However we think cycle is the next plan.

As reassurance the staff and doctor there, debbie the nurse and dr…[Read more]

Hi Charlie,

As colins partner. I can only really comment on what he has said to me and what I have observed. At first Colin was very scared, before taking any of the drugs, just reading the literature!. That said we bit the bullet and went for it. He had days where he felt lightheaded, sometimes breathless, very tired by early evening, at the…[Read more]

Hi all,

Yes it has been a bit of a downer! What we thought odd was that Colin had one more injection to go and they did not bother with it, and told us not to come back on the Friday. I do wonder whether if he had had the injection on the thursday night he might have been ok to go on the Friday….we won't know.

Tom, he had 4 injections in…[Read more]

Hi all,

It has been another one of those days:-0 Unfortunately the cell count only went up to 7. We had one more injection for tonight but they have decided not to bother with that and told us not to go back tomorrow. So it's the worst of all worlds. The consultant is not avaible to discuss until next Wednesday so we do not know what the…[Read more]

Hi sherif,

That's a great response for your mum especially after a few cycles. That's great. This site is very good to ask questions, and the nurse is very helpful. I know others have asked Ellen lots of questions…..

Hope everything goes well

Vicki

Mike,

I see that you are in the forest of Dean. Colin and I are too. We also go to Glos royal. This is where Colin goes for his monthly check up and blood test and an appointment with the consultant. At diagnosis we saw Dr Sean Macpherson. We've also seen Dr Johnny, Dr Frewin and Dr Chavda, all of whom we cannot fault, are prepared to answer…[Read more]

Hi Helen,

Thanks for the information. That's good to know. It's so hard because we were dreading the SCT and now they can get the stems cells we are willing them on! It is a very individual condition which we should know but now;it's just all the twists and turns that can catch you out!

Hope you are keeping well,

Vicki (and Colin) who is…[Read more]

Hi Charlie,

My partner colinn was diagnosed with mm, age 55, a complete bolt out of the blue shock. He was given the option of myeloma X1 trial. We don't know what the treatment would be like outside of the trial because we elected for the trial. On it we have found it to be hard but the treatment and support received second to none. He got…[Read more]

Hi Tom, Keith, eve and Ali,

First of all Ali, hope all goes well for your mum 1st august onwards.:-) And again thanks for all good wishes!

It has been a very disappointing day :'-( . The harvest did not go ahead. The number in colins blood count was 5, when it should be 10. We have been asked to go back tomorrow for another go. Colin said my…[Read more]