Good evening me hearties.

Eve – I have Slims problems with reading. It’s a nightmare. If I put a book down for a couple of days I have to go back over what I’ve read to recall what it is I’m reading! TV series are the same – so I record them now and watch them one after another over a couple of days instead of weekly.
Oh I’m sorry it looks like…[Read more]

Hi Folks.
Thought I’d do a post that wasn’t Dex fuelled 😉
I start my second week of my third cycle tomorrow Maureen so it’ll be sex oops I mean Dex first thing in the morning 🙂 Hmmm just realised I’ll be on Dex the first day at the lakes next week that’s going to be fun lol. We’re staying at Bowness Maureen not too far from Grasmere.

Helen -…[Read more]

Tonight is my Dex night and I’m not going to bite! Wow that’s a first.
I don’t know a lot and I’m not going to go into it here 😉

All the best everyone

Every days a gift
Today is the start of another new cycle

Andy

Hi Chris
I know what you mean about the risks being pretty horrendous. I had kyphoplasty last August and had to sit through all that could go wrong and it was very scary. In the end I decided to go ahead with it.
I had an overnight stay after the operation to ensure my bloods were ok. I was operated on my T11&12 Afterwards recovery of my back…[Read more]

Hi all
Vicki – your right there does seem to be a shortage of light hearted posts of late. We all seem to have dug into our own little MM trenches and battling away the best we can. With little sunshine to talk off.
I blame the drugs for taking the edge off my beer taste and just when I get it back that bloody Revlimid decides it’s done with me…[Read more]

Hi Jeff
I’ve just read through your posts and can understand your concerns. As someone who has been through two and a half years of chemo which is still on going! Maybe I can shed some light on your consultants thinking even if he’s not telling you! Although your PPs are rising they don’t seem to be causing any other major problems. I know your…[Read more]

Hi Frances.
I suffered back muscle spasms early on – I think it was even before I was diagnosed – I was told what is happening is my muscles were protecting me from seriously damaging my spine. So even though it was really painful it was helping me from doing more damage. If that makes sense!
In my case X-rays revealed vertebral wedging all along…[Read more]

Hi David.
I have a SSD as my main drive with the operating system on it! Wow the speed of start up and shut down is incredible. No hanging around for 20 mins for it to switch off!
That’s going to be a long job David. I need to get all my photos together they’re spread over old hard drives, DVDs, CDs and memory cards!
Still this weather is making…[Read more]

Hi David.
I can’t use the word remission as I’ve never achieved it. The best I can say is my disease is stable and that seems to work.
I’m busy transferring all my music and DVDs onto my new self assembled computer and that’s taking up a lot of my time. I did think it wouldn’t take long when I started out how wrong was I!

Every days a gift.
And…[Read more]

Hi Carol.
We were insured through “now I can travel” they have a web site but we deal with them over the phone. Be prepared for a long call because they ask lots of questions.
Web site is http://www.nowicantravel.co.uk the phone number is on there. Good look 😉

Every day is a gift

Andy xx

Hi Helen.
Fortunately for me my taste buds have got their act together now I’m off the cyclophosphamide and I can taste things again. So as they say I’m making hay whilst the sun shines and eating and drinking well. Not to excess of course 😉
How’re you getting on? Are you still yearning to return to work?

Hi Tom.
Drunk on a Sunday afternoon lol…[Read more]

Hi Julie.
Sorry to hear your mums struggling. The reason they will be trying Velcade again is because it’s kinder to the kidneys. I’m on my 5th line of treatment and I haven’t had a SCT either not because of my age, I’m 55, or fitness but due to the hammering my bone marrow has taken from all the drugs they have tried on me. The only drug I’ve had…[Read more]

Hi Ozzy.
I was on Revlimid CRD for 22 cycles and other treatments before that CDT etc I was on tinzaparin and I injected myself over 700 hundred times. I’m now on a pill as Eve says it called Rivaroxaban and I take one a day so I’m no longer looking like a dart board. I go abroad a couple of times a year and haven’t paid more than a hundred pounds…[Read more]

Dear Dusk.
Unfortunately we don’t know anything about you. Your experience of medical matters, your age, where your being treated, your history leading up to diagnosis etc etc.
So giving advise or support tailored to you is difficult. So I guess some assumptions will be made.
I wouldn’t belittle any point of view you have. I may not agree with…[Read more]

Hi everyone
I’m back on the beer whoops I mean Pomalidomide started again Tuesday. My neuts were 0.7 on Monday yeahhhh.
Had my bloods checked Friday and my neuts were up to 1.2 which is high for me. So went out for a celebratory drink last night.
I’m expecting my neuts to drop as I get further into my cycle but hopefully not so far that they need…[Read more]

CDT is used for initial front line treatment because it is very effective. Also a cheaper option I must admit. Velcade is not a wonder drug it has serious side effects and it is also considered to only give short remissions. Just because drugs are new doesn’t mean they are more effective than established treatments.
In the USA you get insurance…[Read more]

Oh I think most patients with Myeloma have a multi disciplinary team working for them – I know I have. From my specialist nurse up to a Professor at another hospital. I’ve seen them all at one time or another too!

Andy.

Hi Jeff.
From my time on this forum the question of the best hospitals for treatment does come up occasionally. I know Dia moved from Wales to Nottingham because he felt it was in his best interests to do so. The major problem is for people who don’t live near a “big” hospital they get seen at their local hospital but they may not have a “big”…[Read more]

Hi everyone.
Well here I am it’s a week tomorrow errr nearly today now that I was discharged from my little stay as a guest of the wonderful NHS. I’m still feeling ok, though I was feeling ok before I was rushed of to hospital, and I take the last of my antibiotics tomorrow morning.
I’m at the day case unit Monday for blood tests and a decision…[Read more]