Hi Cathy,

This is great news… especially the report from the Doctor re: the kidneys regenerating their function on their own, that really would be the icing on the cake… but I have known a couple of people where this has been the case.8-)

I look forward to hearing about you getting Ivan home for the road to recovery… hopefully with…[Read more]

Hey Mari & Steve

Just a note to wish you all the best for the SCT process… I hope it is as smooth as possible with few side-effects… and that you will both be home within 10 to 12 days and ready for the road to recovery.:-)

You have both been here before so you know what to expect… and I hope your expectations are high.8-)…[Read more]

HI Gill,

I am a Quaker by conviction… not by faith or upbringing but because I found them during a year on strike as a miner during the 1984-85 dispute, where the Quakers opened their Meeting Houses as relief centres… not because they believed in the rights or wrongs of the dispute but because there was human suffering involved and they…[Read more]

HI Gail,

I am so very sorry that you have lost the love of your life so quickly to this damed disease. While we are all made very aware that MM is a terminal disease most sufferers get some sort of relief and remissions from treatment… but very occasionally there are cases where treatments fail to stop the disease.

Howard sounds like a…[Read more]

😉 😎 😀 🙂
With knobs on.

Dai.

Hi Vicki & Colin.

Right… time to get real. It is hard to remain positive… bloody hard work… it is moral sapping to take on board the idea and then the reality of another dose of Cyclo, followed by the GCSF injections, the first day of harvest, the necessity of Plerixafor (if needed) and the stress of waiting for the results. But think…[Read more]

Hi Eve,

The reason I questioned Slim's use of a maintenance regime at this time is two-fold.

1. He is still finding his feet after the sct, so it is very early days yet. Your consultant will look at Slim's progress (taking into consideration his case history and the mammoth effort from Slim to get where he is) and he may decide that a…[Read more]

Hurrah… got one through.

Dai.:-)

I don't quite understand Eve.

From what I do understand, Slim has had his SCT and is now in the slow process of recovery. Did you or do you expect him to receive a maintenance procedure by way of Revlimid, Thalidomide or some such other? Did your consultant indicate that there would be a maintenance regime?

Has there been some sort of…[Read more]

Hi Mavis,

I have no qualms about calling myself an expert when it comes to the dreaded constipation. I have had some really bad times which included a lot of pain, stress and absolute exhaustion.

If you are prone to being constipated then take at least one Movicol – Laxido powders once a day. If you feel it is taking hold then take three a…[Read more]

Hi Gill,

My thoughts have been bent towards the two of you for weeks and especially for the past few days. It was yours and Stephen's 'voices' that were the first to speak to me when I discovered Myeloma UK… brave voices, bright voices and you strengthened me more that you will ever know.

Now Stephen has slipped off the radar, peacefully,…[Read more]

Hi Cathy,

Ivan seems to have drawn a very short straw with regards to 'things that can go wrong' during a SCT. Ali's advice to grab hold of the consultant is sound and practical. 😐

In your shoes I would want to know what the medics expect to happen, in what order… you need to know how the different side-effects and procedures are…[Read more]

My Dear Gill,

I can hear your heart breaking from here.

Stephen is in the right place but it sounds as if he still has some sort of mobility and you haven't said if the Magician & Co are going to continue with Stephen's preferred treatment. Will Stephen's ability to communicate be helped by that treatment? Have your wonderful medics…[Read more]

Hi Jaqui,

my story is try much akin to Helens re: diet etcetera. There was a sugar shortage back in the late seventies and many people switched to sweeteners which caused a massive demand and supply from companies. Many of them were terrible, with very bitter aftertastes but one or two, Canderel I recall as being amongst the best, produced…[Read more]

Great news David,

This puts you and your situation in a much better light than a week or so ago.

I know that you will cope with whatever it takes to beat this… so 'Vasbyte' and the best of British.:-)

Dai.

Hi Andy,

I hope you get some definite direction from your next visit to the Prof. You are young and fit so perhaps the Allo might be a good option for you… Either that or a decent remission/plateau from your frontline might see you in a much better light for an auto by the time MM starts bothering you.

In the meantime enjoy life and walks…[Read more]

I hate to voice the possibility but I have had my suspicions about a couple of posts from concerned 'friends' or 'relatives' regarding the onset of MM but then we never hear from them again… I don't know why but something about the posts made me suspicious or a tad uncomfortable… I truly hope I'm wrong but there are some sad people out…[Read more]

HI vicki & Colin,

I was told that there can be a big jump from one day to the next, although 1 compared to 5 last time shows that Colin will need it. Did they send you home with a GCSF injection or double dose? If not, why not? Were they adamant that Plerixafor was definitely not an option at any stage? Mondays are normally hectic with big…[Read more]