Dear both

Just a quick line to say you are both inspiring. As you may know Colin has relapsed. He has just started velcade, dex and cyclophos. Hope it works well and quick. Peter how long have you had mm, i get the impression you have had a few treatments twice. Do you mind me asking….. Do you feel well generally. Did you have an SCT? The big…[Read more]

Hi Maureen

He had the transplant in November 2012. Apparently his light chains started going up in February 2014 but they didn’t tell us as they thought it could be a blip so they had to wait for an upward trend! So he got nearly 2 years but really showing signs from now only.

It’s such a difficult thing to deal with because you can’t see what’s…[Read more]

Hello eve,

Vicki here. This is a completely late post. I just haven’t been on here. This crap disease shouldn’t be allowed. I’m so sorry to hear about slim. I have read all of the posts on the thread and everyone has said it all. Gritty is an understatement. Best wishes to you

Vicki

Hi Andy

Vicki here, not posted for ages but often thought of you all. I’ve posted our updated to Maureen’s offtopic. It’s been interesting. So pleased to hear you are doing well and your pp’s are down so low. That’s absolutely great, brilliant news! That’s great for you guys. Is there any chance of a SCT?

So pleased for you and steph. Best…[Read more]

Hi Maureen

It’s me…..by chance I logged on tonight! We have had a really tough time. Where do we start. I posted way back in July I think when Colin’s light chains started going up. That was a real blow. But Colin seemed really well! Everyone kept saying it! Anyway we decided to try and enjoy ourselves in the hope that things might go back…[Read more]

I do not think anybody will, it is not a “big” cancer and the research required would, I suspect, take up a lot of cash.

Kindest regards -Vasbyt

David

Well done young man (I love using that phrase he he) With your attitude I can see another three years stretching out before you.

Keep going buddy

kindest regards – vasbyte

David

Signed number 3076.

The garden has taken a hit this year Helen. I have reduced the borders and lawned most of it in. We just have three medium size planting ares two of which I have filled with perennials (I love penstemmons). My lovely hedge has gone, replaced by a very smart solid wood and lattice work fence. To be honest I am preparing things for Mo.

That…[Read more]

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I always use Tesco pitted prunes and Laxido I have 5 pitted prunes with my cerial and take the Laxido mid day well clear of any medicine I am taking.

kindest regards – vasbyte

David

What a lovely place to get stuck.

I do not want to “count chickens” etc.. but it looks like my op yesterday was a success. Both kidneys are now draining well and the blood is starting to clear from both,which the Nurse tells me is a good sign this early after the op.

What makes a forum good, in my mind, is light harted banter that lifts the…[Read more]

You two guys are getting up my nose!

I am sitting here, in my hospital bed, having just had my Kidney’s drained and ” stents” put in too keep my pee ways open and you two are off enjoying yourselves – HAVE YOU NO HEART. Wasn’t just one day lousy with bad food, warm larger and ice sheets blowing in from the north. :-))))

Well done kindest…[Read more]

Hi Chuck, Sorry to hear you are going through it. I lost my neck vertebrae in 2009 to this decease. I was pulled of Velcade because of bad side affects namely PN. Went onto Revlimid and never looked back.

kindest regards – vasbyte

David

Hi Ian, Been off line for awhile but today I picked up yours post. When I started out on the Myelomer trail July 2009 I was told to drink plenty of waster – 6 Pints a day were were recommended. I have been trying to do that every since. I do not always hit my “quouter” for one reason or another but I would say my minimum is 3 pints.

I wold…[Read more]

Hi Eve, I was gutted to read the posts regarding Slim’s demise. Through you we all got to know him well. I will think of you tomorrow when I go to my Son’s grave.

Please, please do not leave us.

My love and best wishes go out to you – Vasbyte

David

Hi Peter, I picked up “Spongy Foot” as I called it whilst going through my SCT in 2009/10. It then started to get a lot worse when I went onto Velcade. I only had three doses of Velcade before PN started to get worse. I still have a numbness in my right side calf muscle but it has not go any worse so I ignore it.

I, like most MM sufferers I…[Read more]

Sorry to hear Rev has stopped for you I hope you have better luck on the next treatment whatever it is.

I only started on Rev in Nov 2013 and it has taken me into complete remission at the moment. They have pulled me off of it , 2 months ago now, whilst they try to sort out Prostate Cancer and a Skin cancer. My blood test Friday last was still…[Read more]

Hi Stu, I like your attitude – just the right one to have when dealing with MM. I have had Myeloma since 2009, when I was 67, and it is only this year that I actually got into full remission so keep your positive attitude because you will find it a bumpy old ride with lots of ups and downs.

MM affects everybody differently but we have…[Read more]

Hi Eve, I loved your post. Not unexpected from such a strong person as yourself.

My family know of my wishes when I die. I am at the moment discussing my funeral service with my local vicar. I want to make it an opportunity to ask people to help each other. My granddaughter will read the parable of the Good Samaritan for example.

I will…[Read more]