Hi
Well Friday bloods,Monday bloods Tuesday Platelets early hours took Slim to hospital temp39.Kept in Let out Wednesday evening.Good News Neuts 3.5 Platelets 57. Day off today,back Friday for bloods.:-P
Seems he was constipated !!!,thought i was keeping a good eye on that one!!!,I think part of problem is spending so much time at hospital,there…[Read more]

Hi Eve,

I think we have covered the Hickman Line removal elsethread but as soon as they are sure it won't be needed fot regulatr infusions of platelets/bloods etc., they will whip it out.

I was told that they like to remove it pretty quickly because long term wear (6 months or more, so no need to worry yet) can cause te flesh to mould…[Read more]

Hello Mari

good luck to you and stephen I am sure it will ago ok so glad stephen is very positive I am sure it helps
Love Jo x

Hi Mari

Go on the holiday,and enjoy it,out of the Myeloma Bubble,between different things Slim and I never managed a holiday,and i truthfully feel a holiday would have been good and relaxed us before it all started.hindsight is a wonderful thing.If we new the future decisions would be easier.8-)

Second SCT you thought you would not be able…[Read more]

Hi Mari,

I can only wish you and Stephen the best possible results from his harvest and a smooth run up to the SCT itself The double GCSF injections sounds good… has the chance of Plerixafor been mentioned?

Your local hospital sounds helpful… I imagine they would like the experience… perhaps they have ambitions towards expanding their…[Read more]

Lol I could have told you all That "Lucky Elaine" xx lol

Hi Penny

All the best with your SCT on Monday I have logged onto your Blog ((((I think )) good luck in the road to remission 😀 and ghope its as smooth as mine 😎

Love and Loads of (((((HUGS))))

Tom "Onwards and Upwards" xxxx

Lol Jean Honest when I had the "Stand on your bloody Toes" feeling I stood on my toes its not a plesant feeling but if I drunk more water it soon cleared

Ps I dont do Footy Lol xx

Love one Thrush Free (so far) Tom "Onwards and Upwards" xxx

Hi Janet

Hows you doing see your in remission still 😀 and that good news, not heard from you for a month or two and am pleased you are OK 😎 Not heard anything about Wheatgrass but if its good take it I have started taking "Green Tea" and that is awfull Lol ye I drink it as it says its good for me ???? do I enjoy it???? not likely Lol will…[Read more]

Hi Jean and Frank

Well thrush?? I dont know?, all I remember is when I was on CDT and sometime when having a wee I used to stand on my tip toe's and say oh oh oh bugger oh bugger (it dint stop the pain?? lol) but My Lead Nurse told me drink more (I took that to mean Red Wine/Vodka?) but it worked 😎 more water and less pain 😉

Good…[Read more]

Hi Helen,

Do you have much bone damage? Extensive bone damage seems to be the biggest drawback to insurance companies (and consultants). I have been quoted from 350 to 600 for a return flight to Barcelona… + a clearance letter from the senior consultant of my hospital.:-(

It will be cheaper to go to Portsmouth and take the ferry to…[Read more]

Hi Leigh and joe,

Joe, I think Leigh's advice is spot on. Its based on his experience but I am sure it won't be that far removed from your own.:-)

Leigh, I am so glad that you are managing to find some sort of 'normality' whatever that is… but its yours and it seems to be working so good for you.8-)

My father was treated for lung…[Read more]

Hi Jean,

I had thrush or some relation a while back and I was given a 5 day course of tablets and the instructions to keep my fluids up.

As I have written elsewhere several times recently… I often get a rising temperature which, if my lungs are clear, I take to drink, several litres over a few hours… I force it down untilI get a strong…[Read more]

Whatever works for you shouldl be your guide but be aware that there are certain foodstuffs and drinks that shoud be avoided during certain treatments… grapefruit and grapefruit juice during Velcade for instance if I recall correctly.

I remember asking my consultant about Tumeric and she sighed. She said that they are asked about certain…[Read more]

Hi Keith,

We are taking the same amount… Me in a once a week glut and you spread out over twice weekly.

No, I haven't relapsed… Far from it at the moment with my blip, from 135 to 212, back down to 175 and then down to 125. There was no FreeLight ordered last month so no idea wher I was at the last consult but when I went into the…[Read more]

Hello Jean

Have they checked Franks sugars large amounts of DEX can temporary rise the levels to high sugars are one of the side effects of thrush I had to have triple my dose of insulin while taking dex to combat it
Love Jo x

Hi Jean

Slims had thrush,I think they put it down to not enough fluid,and with there system taking a beating it,s just one of those things.Slim has tablets at the moment in his SCT pack.
Just got up out of bed,Slims in hospital again,took him in last night,temp up,mainly took him in to check his bloods,They said everything was fine,but kept…[Read more]

Hi Keith,

I have taken my Dex once a week from the start… 2mgx20=40mg every Tuesday.

My bloods were monitored fortnightly for the first 2 Cycles (I was told 3 but they gave me a 4 week appointment at my 3rd consult).

I was interred with a lung infection during Cycle 3 and I was told that my upward rise in my light chains may well mean a…[Read more]

Hi Penny,

Nottingham City Hospital supplied my ice by way of those long fruit flavoured icicle pops… and they were tasty and efficacious… I'd make an enquiry if I was you and if the ice offered is by way os standard cubes I'd grab a hafl-dozen ice pops.:-D 😎

Dai.

Hi Keith,

My first two cycles were monitored on a fortnightly basis…. With general bloods and a Freelight test (Bence Jones). Cycle 3 was as normal and I was declared 'off probation' from Cycle 4 onwards. I am now on week 2 of Cycle 5 and I seem to be fashioning some sort of normality.

I take 25mg of Rev, daily for 3 weeks and then a…[Read more]