I use predictive all the time Richard the only time I have any problems is on here. Changing and to bad! Why? Sometimes changing two word at the same time. Maybe it’s just me or the Dex effect lol.

Just had to edit a lot of that last post! Bloody predictive text on here hasn’t improved any. It does make posting a pain sometimes.
Lizzie just checked with the wife and she says the telephone number is on the website.

Every day is a gift

Andy xx

Ps Lizzie phone number is 0845 2 307 155

Hi Lizzie.
I think I read somewhere that even “healthy” people can have a trace of paraproteins in their blood. So your doing great. Your in remission when your stable and your PPs are very low or not present. So I’d say a couple more blood tests with the same results and you’ll be classed as being in remission. Consultants do seem to be a bit…[Read more]

Hi Babs.
I’m half way through my 9th cycle now. My PPs are stable for the moment.
It’s my steroid night but I will try and keep this post short and to the point and not ramble on to much! Oops there I go.
The steroids are the main down side of my Pom/Dex. I feel the best since I was diagnosed I’m eating and drinking well. I can actually taste…[Read more]

Hi Nick.
Sorry that your mums joined the Myeloma crew.
Quality of life is the big factor in the treatment or no treatment debate.
Your mums age will mean if the docs do treat her they won’t give her the “full” treatment however the side effects are still quite severe. Steroids are no walk in the park they lift you up and then you crash. Though I…[Read more]

Hi Susie.
I was on RCD for 22 cycles and the main problems I had were being neutropenic most of the time ie neutrophils below 1.0 my other bloods weren’t too good either and nausea for a couple of days after taking the cyclophosphamide. Aciclovir, which I also took and still do is an anti viral and allopurinol which I didn’t take is for prevention…[Read more]

Thanks Helen. It’s been a sad time.
No news is good news I think! My PPs have remained the same. Hopefully I’ll get a period of stability.
Just got our insurance for our trip to Kefalonia £67 for cover for the both of us! Must be the cheapest yet. Though the phone call was quite long and probably costly.
I got insurance when I was on Revilimid…[Read more]

Hi David.
I’m just about to try and get some sleep before I start to read lol.
I hope everything goes well with the operation and you can cross it off your list.
I would like to be loose now and again lol I’m mainly tight 🙁
How did the skin biopsy go?

Every day is a gift

Andy

Hi DavidH
As DavidM indicates constipation is a seldom talked about but constant bed fellow with myeloma treatments. I find Dex bungs me up good style. And being on Dex once a week every week takes it’s toll. As DavidM says note down when it happens and you will see a pattern and hopefully you’ll be prepared and able to take some preemptive action…[Read more]

Hi Scott
Sorry for the delay in replying.
Just finished my cycle 8 and I’m on Pomalidomide and Dex. So that’s 8 28day months. I’ve not had any nasty side effects to report. Just the usual Dex highs and lows. I take 40mg of Dex once a week every week.
My consultant tells me she has things to try after Pomalidomide stops working though I’m a bit…[Read more]

Hi
I’ll throw my Dex induced bit of information in the ring. From what I’ve read I don’t think it’s so much cost based not having a 3rd SCT I think it’s statistics based. I could be wrong here but I have read or been told that the remission gained on a second SCT is “usually” around half the first. So I presume a third is shorter still. The…[Read more]

Hi Helen

Good the hear from you again 😉 my last PPs were 8.4! Unknown territory for me.
I know what you mean about ” another avenue closed” I got the same result from my brother and sister and I’m on Pomalidomide now cycle 8, I think, with not much to follow when it starts to fail. But hey ho that’s a worry for the future. At the moment I’m ok…[Read more]

Dear Sarah.
Sorry to read your sad news. Such an eloquent and beautiful post.

I can only add my sympathies to you and your family and wish you the very best for the future.

Thinking of you especially for next Tuesday.

Andy xx

Hiya.
When I was first diagnosed I was in and out of hospital frequently and didn’t think I would have very long. Talking about my diagnosis with anyone who’d listen helped me get everything into perspective and helped he come to terms with my myeloma.
We were married 3 days after the word myeloma came into our lives. Like I said previously the…[Read more]

Hi David.
Yes PIP is the replacement for DLA. All new applicants go onto PIP straight away and DLA claimants will be migrated over in due course. It’s all a money saving exercise that’s costing hundreds of millions to implement and the only way they seem to save money is to cut the benefit payments and delay the payments as long as possible.
Oh…[Read more]

Hi all.
Well I’ve been celebrating my PP result for the past week 😉 sunk a few beers in that time. Gideon Osborne will be pleased with the tax take off mine and Steph’s drinks.
I’m obviously hoping that the Pomalidomide keeps working for a long time yet but you never know with myeloma. I’ll see what my consultant says Thursday. Got to remember…[Read more]

Hi Maureen.
I agree it’s shocking the length of time it’s taken. When I applied for my DLA I had the form filled in by an expert at a charity. He even got it back dated for me to diagnosis! I only had to wait a few weeks. When I had to renew, for some reason I didn’t get a indefinite award, my consultant filled a good proportion of it in and I…[Read more]

Hiya David.
It’s going to ge a busy few weeks for you I hope everything goes smoothly.
Your still on anti thrombosis injections! I get to take a little pink pill now instead. I think after jabbing myself approx 800 times my consultant thought I’d been through enough.
Your bloods should improve because Revlimid is known to depress them. It got my…[Read more]

Hiya
SCT is not a necessity in the treatment of myeloma. Though it is commonly used to good effect. There is a big discussion going on now as to the merits of just having drug therapy.
As your husband has been successfully treated with CDT he could stay in remission for a long time before he needs treating again. For a SCT to go ahead you need to…[Read more]