Hello Angelina,

I'm sorry that we meet this way. You do seem to have a lot to deal with at the moment and i appreciate what a very anxious time this is for you.

You say that you have had the bone marrow biopsy – have you had the results now? As far as I am aware, this does give an accurate diagnosis of Myeloma. It is my 39 year old partner…[Read more]

Hi Polly
Sorry you have to start treatment. I started mine just over a year ago and have been through several different treatments but one thing has remained a constant that is the injections. I self inject tinzaparin daily to prevent blood clots I have from day one of my treatments. It's not too difficult and only sometimes a little bit painful…[Read more]

Hi Ali
We're pretty boring when we go to Greece we go to the same place, Kefalonia, same hotel, eat at the same restaurant and just laze by the pool reading whilst catching some sun! We used to go for long walks too but my back damage has put paid to that. Holiday insurance is a bit steep but necessary and planes are a good place to pick up…[Read more]

Hi Keith.
Good news about your blood tests. Now all you need is your platelets to continue climbing. Then you'll be back to stabbing yourself again 😉
Good luck Keith
All the best
Andy

Hi Vicki & Colin
My paraproteins are at their lowest level since diagnosis they are now at 24 – well they were that was the news we received when we returned from Greece – that's a fall of 8 from my previous reading of 32! Not a great fall or reading but it's going in the right direction. Fingers crossed for last Fridays blood test! Oh I found…[Read more]

Hi jean

PP levels definitely don't need to be zero…they were going to do mine when mine were at 28 still!! And they had only halved from 50! I am pleased that I got down to 8 when I had my transplant, but 0 definitely shouldn't be a requirement. They probably just want to check he has plateau'd before they make the decision…but I would…[Read more]

Thanks John.

One of the issues is that when you're on trials like the Myeloma XI trial, they won't let you have it sub-cutaneously (or at least they wouldn't a year ago when I was on it!!)

Not sure about how much revlimid is known to cause PN so need to ask more at my appointment next month….didn't think it was a major side…[Read more]

Hi Megan.

I was on velcade too and found that cold feet were the start of neuropathy. So glad that Phil has had the dose reduced as I tried to stick it out and it got worse and worse, to the point I had to have medications to try to relieve the pain…and they didn't always work! Luckily 6 months post velcade/ SCT things started to improve and…[Read more]

Hmmm… I hadn't even thought about it and have to say that I went swimming after about 6 months as my kids were desperate to go with us, and I was sick of making excuses of why I couldn't do things with them all the time. I spend my life around snotty nosed kids coming over to play and so can't really miss these things.

This summer we went to…[Read more]

Hi Sarah Jane

I am quite close to you as I live in High Wycombe!

I was diagnosed in 2009 with SMM and then progressed to treatment about a year later (although I now get treated at the Marsden in Surrey). I also was put onto the Myeloma XI trial in November 2010 and got revlimid first time. It worked for me for 4 weeks and then I plateau'd…[Read more]

Dear Rachel

I was shocked and saddened by the untimely death of Paul. We where having a similar MM journey struggling to get to SCT as the medics tried to find the right drugs. I went through the DTPace regime before Paul and again it failed me. I must admit when DTpace worked for Paul I was a touch jealous but also pleased when it worked for…[Read more]

Hi Vicki and Chris.
They do like putting hurdles in your way. Considering what you've both been through to get to this stage I think this latest blip will be a piece of cake and those cells will be back where they belong in no time at all.
Sorry I haven't posted for a while been fighting of a few infections.
Good luck with the transplant…[Read more]

Hi Pat
I got my blue badge through my local council and found it straight forward. I have the higher rate DLA so I qualified automatically. I was also entitled to a bus pass as well. I'm 54 😉
Good luck with your application.
All the best
Andy x

Hi Helen.
Sorry to hear your still having trouble with your chest but at least you now know the cause. I'm just getting over a cough and cold and a couple of infections I arrived home with after our lovely holiday. I'm starting to feel normal again now – well as normal as I get to feel on RCD. I've been taken off the cyclophosphamide for the…[Read more]

Thank you all so so much for replying to me. You all seem such caring people and I look forward to getting to know each and everyone of you. I'm off to bed in a min, it's been a long day in 'my' world today and I'm so tired. We are having a Care Alert Monitor installed tomorrow..and it's 'my birthday' so need my beauty sleep – 37 years old…[Read more]

Thank you all so so much for replying to me. You all seem such caring people and I look forward to getting to know each and everyone of you. I'm off to bed in a min, it's been a long day in 'my' world today and I'm so tired. We are having a Care Alert Monitor installed tomorrow..and it's 'my birthday' so need my beauty sleep – 37 years old…[Read more]