Hello Etta and Hubby,

I'm sorry that I missed your initial post but I thought I'd say hello and offer a guarded welcome to the forum… guarded inasmuch as I wish that you never had reason to seek us out.

I am sure that you are both in shock right now and desperate to find out more about MM and its treatments, processes and procedures……[Read more]

Hi Mari,

You are right in saying that there are people in worse positions than you and Steve but that has nothing to do with your immediate world when you are faced with the possibility of bad news and the agony of waiting for the consultations that confirm or deny your worst fears.

We know exactly where you are and we know exactly how you…[Read more]

Hi Amelie,

Unfortunately I had a battle to produce enough stem cells for even one SCT… despite five full days on the harvester and two very expensive 'booster' injections during the week. So just the one, which failed after ten months. 😐

But here I am and here I aim to stay for as long as I can.8-)

Dai.

Hi Julie,

I am so sorry to hear that your Mum has passed on. I am glad that you and your Dad were there with her at the end as she wanted. Remember your Mum as she was before MM but also remember how brave she was throughout her illness and how inspirational and helpful she was to others.

Dai.

I can see from others experiences that we are spoilt rotten at the City Hospital, Nottingham. We are fortunate to have a specialist Day-Case Unit, complete with a Harvesting room (that also has similar equipment that cleans/treats blood) next to an adjoining general consulting waiting room with a central phlebotomy unit and a consultation area…[Read more]

Whoa lovely lady…

I wasn't referring to you in any way, shape or form poppet, I was stating my ignorance because I am increasingly aware that the more I get to know about MM and all its processes and procedures, the more I realise that I am just scratching around on the surface.

Looking back at my post it was a clumsy introduction and I…[Read more]

Thank you Mary,

Please pass on my best wishes to Theresa and your family.

I often think of Patrick, remembering when we were both having our SCT's and exchanging news and views via Theresa. The Cheltenham Festival was on at the time and I was aware that your Dad enjoyed the racing, so I studied the form via the internet and had a few small…[Read more]

Thank you Sharon and I wish you all the best with your results… I hope you achieve the CR bracket and 0 across the board if possible.

A question – if you finish C8 tomorrow then why do you have to wait until mid-November? The longest I have had to wait is 2 weeks. Eve & Slim have also had these long gaps between treatment and results and it…[Read more]

Hi Mari,

First of all you have to allow the hope that this is a 'glitch' in the readings… it has been shown that these do occur. Secondly your consultant will want to see 3 readings on an upward curve before declaring relapse… and even then only if the trend shows a significant rise (5 to 6 to 10 etc). I met someone at the Nottingham…[Read more]

Thank you David, Gill and Liz,

If positive thinking has anything to do with it I will live forever. 🙂

I really am going to try and enjoy every day of my remission… however long or short it may be. I have a book to write, a series of albums to record and some serious down-time to enjoy with Janet. As I have said else-thread, this…[Read more]

Hi Eve,

I don't need reminding of how ignorant I am regarding the processes and procedures of MM, however much I read or research… at the end of the day I can only refer to my own experience and information that I have gleaned along the way.

What I don't understand… and personally find unacceptable… is the parameters and limitations…[Read more]

Hi Terry,

I agree with Bridget, you have certainly been through the mill, several times by the sound of it.

My SCT failed after 10 months (I was told to expect 3 – 5 years) so I do understand how hard a relapse can hit you. I relapsed in February/March this year, confirmed in April (on my wife's birthday) with an accompanying Myeloma…[Read more]

Rant away Debs… and good luck with the NICE/local health board issue.

Funnily enough I might have a similar problem… I rang the hospital today to enquire about my Clexane injections… whether I had to carry on with them long term or be referred to the warfarin clinic. After consulting with my consultant one of the lead nurses instructed…[Read more]

Thanks Debs,

I am allowing myself a couple of days to adjust and then we are going to make some flexible plans. I need to be able to write each day – for a set period… a couple of hours or so. I have found that treatment and side-effects has severely restricted my creative pursuits because while you can get your body to persevere you really…[Read more]

Well done you!

You are an inspiration to us all… especially in your refusal to be defined or restricted by your condition.8-)

I am really looking forward to seeing any photographs… and especially any videos.

Brilliant! 😀

Dai.

Thank you friends.

My remission period has come at me six weeks early, I had no reason to suspect that I wouldn't complete all 8 cycles… but it seems that 6 will suffice.

I am happy but also a little scared… I feel a heavy responsibility to achieve so much in an unknown amount of time. I only produced the bare minimum of stem cells, so…[Read more]

Hi Mike,

During my consultant's meeting yesterday I raised the question of a mini-allo as a possibility for the future… (wanting to know if my age – 57 – would stand against me) and she surprised me by saying that they are being phased out very quickly across the UK and most likely will not form part of the MM treatment planning at all within…[Read more]

Hi David,

I am on 'Bonefos' – a Sodium Clodronate, of which I take 600mg (300mg twice a day).

I had 1x bag of Zometa at the beginning of my cancer journey, when they were treating me for secondary bone cancer, primary unknown. My mate, the ill-famed Welsh consultant, stopped me continuing with Zometa because he was convinced that I would…[Read more]

Hi Mavis,

Well I'd like to say that I'm still on a high… but… I started my week's 'rest' – the third week of the cycle – feeling in good spirits but I started feeling unwell with dodgy waterworks last Sunday and ended up with a high temperature. So I made the 40 minute journey into the day-care unit of my hospital on the Tuesday…[Read more]