Treatments have moved on since your Uncle Tom died. Dying will still be traumatic I know but I suspect your Dad will live a lot longer than you imagine at the moment.

I started out on this road in 2009, the prognosis then was “Sale by Date” Jul 2011, I am still here! And I have Prostate Cancer to go with the Myeloma. I went down the normal…[Read more]

It sounds as if you are going in the right direction Andrea. Most of the Chemo seems to give the sleepless nights etc…

Keep going it is all worth it in the end.

Kindest regards – vasbyte

David

Thanks Andy, I am not on a Dex night, although it would have been if I was still on Chemo, just cannot sleep at the moment. Everybody ask why they have stopped the chemo but I have no clear answer at the moment. It is certainly something to do with the operation on my Prostate Gland on the 13th August. I will ask the Consultant when I next…[Read more]

I did the same, the Macmillan nurse at Musgrove Park Hospital. I got the indefinite level when I I re-applied after 18 months.

Is PIP the replacement that is being brought in, not up to date nowadays LOL.

KIndest regards – vasbyte

p.s. Teeth out tomorrow afternoon – just not looking for ward to it.

yes, got to agree I miss Dai’s comments.

Hi Megan, my neuropathy is about the same. I call it spongy feet because that is what it feels like. I also have a numbness on the right hand side of my right leg, at hip levle. I only really notice these things at night, During the day they just fade into the background.

You are right Eve, I have done so much since 2009. Coffin is finished…[Read more]

Well done Andy, just keep going, keep bl**dy well going.

I had the suspicious scab cut out of my head two days back now. Still sore, I have the stitches out in about 7 days. When I will get the results I do not know. I suddenly realized walking around the hospital just how many old men seem to have plaster patched on the their heads, just…[Read more]

Hi all

Well the appointment came and went….Colin hasn’t relapsed yet but had a biochemical change! Effectively it’s on the way but not here yet. Apparently Colin’s light chains have gone something like December 13 (normal 40), February appt 75, April appt meant 140, June appointment about 248 and we don’t know what they are this time so…[Read more]

David best of luck with the op…..keep going you have the right mind set. You might as well whack the prostate condition and mm whiles you are at it……you are positive so be headstrong and get that positive outcome x

Congratulations Tom, so glad to hear you are doing well. Always good to hear good news stories. Keep it up. Good luck with your move Carole and very best wishes to those with upcoming sct…..as Tom says it’s very doable

Vicki and Colin x

Hi there,

Andy is quite right. There are many drugs out there and we had the very same conversation with our consultant today. The jury is out about sct and whether drug treatment is the better option. Mavis has been mm free for over 2 years I believe. My colin had an sct but he’s now on the brink of return and he only got from October 2012 to…[Read more]

Hi, Yes my consultant told me that they are not quite sure what Dex actually does but it does seem to aid Revilimide to do its job. I go for my monthly check up on Friday. I am on my 10th cycle – I think of Rev. Let you know how I get on.

Kindest regards – vasbyte

David

Well yes, but at least you have now got it. :-)) Well done.

Kindest regards – Vasbyte

David

Hi Annette, not to wordy at all thank you for the reply. I was diagnosed in 2009 after breaking my neck getting out of bed one morning. I have been down the normal pathway and had an SCT although I was 69/70 at the time. I never made it into remission and the second line Velcade failed for me, I had terrible PN.

I went onto Revlimide nine…[Read more]

Hi Annette 4.5 years on Revlimid and this is your first treatment! That is worth a WOW. Am I miss reading this, did you not have CTD or SCT before going onto Revlimid?

What dose of Revlimide are you taking and are you taking steroids with it?

Kind regards – vasbyte

David

Best of Luck Don. What more can you really say :-)))

Kind Regards – vasbyte

David

And Me, I had three cycles of Velcade and had bad PN.

I went straight onto Revlimide and within 3 cycles was in “excellent Remission” – Consultants words. All blood readings at normal levels and no sign of Myeloma. This is the first time in 6 years that I have gone into remission. 25 mg Rev for 21 days and 7 days off with now 10 mg Dex (was 20…[Read more]

Hi Deborah, Firstly the best of luck with your SCT.

When I had mine in 2010 I thanked the lord I had taken in my Laptop and Mobile phone. I would otherwise have been bored to death! ~Do not forget their chargers.

I had a really bad sore mouth and found great difficulty in eating anything, which all tasted and smelt fowl anyway. A Thai…[Read more]

Hi Andy, I was shocked when you revealed that you had a Catheter in 2.5 years. I just struggle to put what you actively do with the problems you have!! Big big WOW buddy.

I have had it since 21st June now and I have a trial removal on Monday 7th July. I have really struggled to find a comfortable way of wearing it, I tend to get sore, tried…[Read more]