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]

Hi David

Sorry to hear things were a bit rocky with the prostate, but glad to hear they’ve got it controlled….hope the hospital visit for the water will sort itself out. You and Andy seem to be enjoying yourselves….we must take a leaf out of your books!

Vick and Colin x

Hey all

Well done on your trips, so glad you were able to enjoy it 🙂

Vick and Colin x

Hey Craig, you sound like you have gone through the milk but glad to hear it’s all going in the right direction. Keep it up 🙂

Vicki and Colin x

Hi all

It’s very heartening to hear of your progress. 7 years remission seems an absolute age and well done you. All of the good news stories give encouragement, if a little wistful if Colin is on the way back after 18 months….he’s never done anything else by the text book so it’s amazing it seems he following the book on this one!

Good for…[Read more]

Hi Andy

Thanks for the encouragement. It’s weird because Colin has on the whole been very good of late. He has a few spells of tiredness but generally ok. Part of the fatigue is the worry about the results I’m sure! Colin reckons the consultant said that if pushed he’d say it was coming back because we were at the 18 month average. I don’t…[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

Wishing you all the best victoria. What I’ve found difficult is that I like to fix things and can’t damn well fix this condition, as much as I’d like to! Glad you have found some solid ground and very much hope your mums treatment starts to hit the condition!

Look after yourself too 🙂

Vicki and colin x

Hi Maureen,

Firstly hope you have a great holiday in Cornwall. Lovely whatever the weather!

It’s very odd Maureen, Colin has been better recently than had been for months. I wasn’t sure from the consultant whether they went up the time before and he hadn’t said anything or whether this was the first time they’d gone up. If it was the first time…[Read more]

Well done Keith, I was told at my last appointment, 3 weeks ago now, that I was in “excellent remission” so I know how you feel, “Good init”. My next appointment is 27th June so keeping my fingers crossed that it is supported by the latest blood test.

kindest regards – vasbyte

David

Not quite sure I understand “he is recommending you have Chemo but it is not because of the money”. Revlimid is very expensive.

If your Myeloma has relapsed, and you do not give any details of that, you would naturally go onto the next phase, provided that is you want to.

Sorry I could not be more helpful

Kindest regards – Vasbyte

David

Like your Dad I have Myeloma and Prostate Cancer. I am on third line Myeloma treatment, I was diagnosed with Myeloma 2009, and with advanced prostate cancer 2011. I am in complete remission with the Myeloma on Revlimid. something I have never achieved in 5 years of SCT and Velcade. My prostate is an agressive one and I am being treated with…[Read more]

Hello Ian

Jay to give your dad some encouragement……a colleague of mine has prostate cancer and he has been told it’s very treatable and taking medication of a regular basis can control it. I realise it’s a real blow to have that and myeloma! I so hope that you get some luck and that your dad makes some progress to remission

Best…[Read more]