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, 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]

Hi Wendy, not a light chain suffer I am afraid but I thought I would welcome you to the site.

I started here in Jul 2009 with a sell by date of Jul 2011. Recently I started on 3rd line treatment and for the first time in 5 years I have just gone into “excellent remission”, my consultants words not mine. The point is you will go through some…[Read more]

That is real good news Tom – congratulations – Keep going buddy, just keep going.

All the best Carol with your move down under. We will wait for your first report of Myeloma in Aus.

Kindest regards to your both and vasbyte.

David

I accept I have never done it, take a recorder that is, and my wife who has a memory like an Elephant always accompanies me but I have never heard anybody say their Consultant complained – I would do it if I was on my own.

Kindest regards – vasbyte

David

p.s. I think you are worth it as well Andy LOL.

Yes my prostate is giving me big problems at the moment. I am having to wear a catheter at present which whilst not pleasant at least means I can now get 8 hours sleep with no pain, something I have not done for about 4 months. Oncology appointment on the 7th to sort out the long term position. All sorts of horrible, they sound that whey to me…[Read more]

I believe some people take mini recorders to consultations.

Kindest regards – vasbyte

David

That is great Pauline, for some it works for others it doesn’t. I think a lot of it comes down to how strong you feel about these things.

I have a friend who believes in the power of prayer and she regularly prays for me each week. Every time I see her I thank her for her efforts. My original “sale by date” was July 2011 and I am still…[Read more]

Hi Andy, Well it all got delayed yet again. My fault this time. My visit went well on the 4th but I am deaf in the right ear and when booking the appointment with the Nurse I miss heard what she said. I did not want an appointment on or before the 21 June. My son was getting married that day. I misheard her answer and discovered, when the…[Read more]

I have seen curcumin on the site several times but nobody seems to have ever had the dose or timing sequence. I am not a great believer in third party medicines, we had whole thing going about eating Cucumbers in a greenhouse with a glass of red wine on the site at one time.

I always tend to think of the story that the boss of Walmart, the…[Read more]

If you could post the names of the Drugs that will be a big help I think, somebody will recognise them. The “normal” order of things appears, as far as I can gather, to be CDT, SCT, Velcade and third line Revlimide. After that it is pot luck!

kindest regards – vasbyte

David