Hi Nicki,

We are so glad that Velcade has worked so quickly and so well for Sam. It did so for me, taking two cycles to get right down but it nuked a secondary cancer on my sternum as well so I'll allow it some grace.;-)

The next few treatments can be faced with a smile and you can face the preparation for his second SCT with a positive…[Read more]

Hi Nicki and Hi Pete,

I am a great believer in Revlimid. I was on it from the first week in March 'til mid-November 2012. I picked up the C: Difficule bug in May and it played havoc all year although it wasn't diagnosed until late July (although my ex-wife, a senior care supervisor recognised the symptoms and called it in June). I was taken…[Read more]

Hi Rob,

I am currently on Bendamustine… I have had CDT, a SCT, Velcade and Revlimid. There have been times during those treatments where I felt as strong as a new born babe and I couldn't imagine ever feeling anything near 'normal' ever again… but then I turned a corner and within days I felt really good and the feelings of absolute…[Read more]

That's the way to go Andy… we are so pleased for you and Steph. Another decrease like this one from the next Cycle and you could be in SCT country… if they still have that on the agenda that is… I certainly hope so. 😎

Janet has bought me a bottle of double chocolate stout and I aim to enjoy it… perhaps over 2 days after next Tuesday…[Read more]

Hi Eve and Megan,

I had my second infusion of Zometa today after my Bendamustine infusion. I asked about the regime and I was informed that I will have 8 monthly infusions, followed by 8 bi-monthly infusions and then stop.

So that's the Nottingham regime. 🙂

Regards

Dai.

Hi, (name?)

Ellen is the administrator and specialist nurse at Myeloma UK, the hosts of this forum… the contact number is in bold orange at the top of this page but here it is: [b]0800 980 3332[/b]

The nurses at Myeloma UK will answer any query concerning Myeloma for you on the phone. 🙂

Regards

Dai.

Hi Sue,

Perhaps Scarborough is a little too impersonal, as well as being far away, even if it was a place you both enjoyed visiting. The cricket pitch sounds really good for you, because you will be able to visit easily, walking and talking as you traverse the ground… although you might want to talk internally if there is a match on… ;-)…[Read more]

Hi John,

After 4 years I had my first infusion of Zometa tagged on to my 2nd infusion of Bendamustine Cycle 3 last month. Tomorrow will be my 2nd infusion of Zometa with my 2nd infusion of Bendamustine Cycle 4… I had the symptoms described by others as 'Zometa Flu' last time but nothing too unpleasant… I will monitor and report over the…[Read more]

Vicki,

Remind me, where is Colin at the moment… post SCT but for how long etc… and is he on any treatment, maintenance etc.

Regards 🙂

Dai.

Hi Andy,

Is Keith married? Has he got any family close by? He never mentions his support network and I sincerely hope he is not going through all of this on his own.

10th March was his last post and he had managed to get home at that point… here's wishing him all the best and hoping that he is fighting his MM on an even…[Read more]

Hi Billy,

I can only imagine that you are either on megabucks in your job or you believe that the difference between your wage and all possible benefits makes this suffering you are going through seem worthwhile.

Put it this way… your insurance firm gets a claim from you saying you have got a terminal illness and you wish to make a claim…[Read more]

3.2 in 2 visits, is that right? Why didn't they try for 3 or 4? Or do you mean 2 actual visits… different weeks etc.,? :-/

I know that I got the same as Colin… 2.1 million and that after five days x 5 hours a time for 5 days and 2 midnight returns to the hospital for 2 shots of Plerixafor… it was a long week and 'someone' was supposed…[Read more]

Good luck with the Velcade David, I had mine in the bad old days of Cannulas and my veins are a bugger to find at any time so finding a suitable site included a lot of fun and games… so sub-cut sounds like heaven (I have been taking Clexane daily – self administered at home – for20 months, so I am used to moving them about. 🙂

General…[Read more]

Welcome home Frank indeed. 😎

You are not on your own regarding that feeling of fear Jean… Janet had it too and in a way so did I. Don't get me wrong, I was glad to leave hospital and get home but I was aware it was just the 2 of us with me as weak as a kitten and with a long, slow recovery ahead of us.

I get a small version of that…[Read more]

Well I went in today at 11am and had my blood taken… my Neutrofils were 1.17 which meant that Thunderbirds were Go… but very slowly, in 1st gear and with a hill start, on a 1 in 3 hill. The Bendamustine was ordered at 12pm or slightly before. It arrived in the Day Case Unit at 3.50pm and I left the unit at just gone 5pm. It made for a long…[Read more]

Hi Eve,

Keith's last post was on the 10th of March, a reply to me when I asked him about his latest treatment (below).

Being home is good although he is still neutropenic with very low platelets. I am hoping that this latest treatment is working and that he will let us know of any progress as soon as he can. 🙂

Dai.

[quote]Hi…[Read more]

Hi Eve,

I have to agree with you regarding sending the consultants back to school.

One of the prime objectives in giving treatment is to ensure a balance between efficacy and quality of life… apart from hospital visits for consults and treatment I have not been out of the house in 6 weeks due to being Neutropenic. I told my consultant…[Read more]

[quote]Never mind Dai, the neutrophils are just being a bit sluggish! Hopefully they will gird their logins and get a wriggle on! [/quote]

Hi Vicki,

They certainly need to get a wriggle on… I will have my bloods done in the Day Case Unit on Tuesday morning (due to no clinic on Easter Monday)and if my Neuts have managed to squeeze over the…[Read more]