Hi Jennah,

First things first… if your Dad's back is hurting don't let him pick up little bruisers… I fractured my shoulder doing just with my Grandson four years ago, when my bone damage was getting worse (although I didn't know it at the time).:-S

What treatment is he on? If it is his first (frontline) treatment it will be something…[Read more]

Hi Eve,

I agree with you about hospital days… they really throw your routines out of kilter. I have quite a fixed routine at home, with flexibility when visiting but the hospital can turn you around in an hour or so or keep you for half a day. 😉

[quote]Good News Neuts 3.5 Platelets 57.[/quote] Good? Superb you mean. It certainly…[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]

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]

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]

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]

Hi Angie,

I am so glad that your Mum was able to request the start of palliative care… It means she was fully aware of her situation and despite her discomfort and fears she was able to dictate her next step… a very brave and very independent woman.

I hope she moves on with peace and full knowledge of the love surrounding her. I am…[Read more]

Hi Judd,

You paint a good picture of the pain.:-D

I was right back there with you. Mine was a very similar story with two collapsed vertebrae that had crumbled into small picees and were pressing into my spine… and my GP, after months of agony and 10 weeks sleeping upright in a chair, sent a chiropractor to apply massage and pressure…[Read more]

Drink your 3 litres a day Tina… and while on any sort of treatment add another litre or so. Also…spread your imbibing throughout the day… is pointless drinking like a fish up to tea-time and a then only a cup of tea or so up to bed-time.:-|

I often get high temperatures of 37.7/8, sometimes even 38 or just above… I am under strict…[Read more]

Hi Eve,

They left mine in for four weeks… at my first consultation after leaving hospital. I asked why then and was told that it was redundant… that they only left the line in if it was still in regular use. It took about twenty painless minutes from going in to the side room in the Daycase Unit with a doctor to coming out. The procedure…[Read more]

Hi Vicky,

You have to remember that those of us who offer advice here do so with all the benefits of experience. We are looking back and recalling what it was like for us… we recall the procedures and the side-effects, and the processes… but we rarely tell of how we felt at the time… mainly because our fears and apprehensions have been…[Read more]

I built myself up for a holiday last September after a successful (while I was on it) but gruelling set of Cycles of Velcade. It was only a week back home in Fishguard, Pembrokeshire but it was a large house share with two sisters, two brothers and their spouses. The thought of the ten of us together for the first time… well, ever… thrilled…[Read more]

Hi Vicki,

I am in Tom's school… it is hard and at times unpleasant but ultimately it is worth it.8-)

I only got enough Stem Cells for one SCT and it relapsed after 10 months… we had a prognosis of 3 to 5 years after doing so well on CDT (from a very tenuous starting point of 3,500 Kappa Light Chains to full remission in 4 Cycles) but…[Read more]

Just seen Siobhan's post on Facebook…

Bridget's funeral will be held at 10:30am on Wednesday 4th July at Stopsley Crematorium, Luton (LU2 8DD).

Flowers from family only, but donations welcome to Myeloma UK.

Dai.