That’s really good news, a real case of not giving up. Still, to be expected although some call it being stubborn. Carry on being stubborn and let everyone read and digest – it’s not over ’till it’s over

Hi Angelina,

How frustrating for you when your notes are missing. It is a worry as well if they are not using electronic patient records how do they track your progress effectively?
Although it must be reassuring to know that the Doctors are going to share information about your test results. They should be working together to make your journey…[Read more]

Hi Stuart,

As a newcomer to the site I haven’t found any difficulty in navigating around or signing in. I just wanted to say I find it a bit unnerving how public the forum is. It put me off posting for a few weeks because I could read posts, without signing in.

I understand that this approach is probably to ensure that those people who wish for…[Read more]

Hi Karrieanne,

I have assumed that the paraprotien levels must have the potential to rise quite quickly, or blood test results start to show organs, for example kidneys/renal function, being adversely affected. Two monthly monitoring is maybe a “safe” option initially until a series of stable test results give an assurance that the cancer is not…[Read more]

Hi Angelina,

I noticed you had not had a reply as yet and thought I would say hello.
Sorry I do not have pearls of wisdom to help you. I am a newbie to the Forum and just coming to terms with the diagnosis myself. It is so hard to understand this disease which seems to affect everyone slightly differently.
I find it strange that the presence of a…[Read more]

Hi Richard.
Seems MichelleW is pushing the myelomacrowd quite a lot. Seems to be an American site.
I’ve not read much on there so can’t comment on its content though it’ll inevitably be more skewed to the American health care system if it is an American site. Guess I’ve got some reading to do 😉 hopefully it’ll be another valuable…[Read more]

Hi Maureen
I was pulled off Velcade after 2 cycles, I was on PAD, as it was deemed not to be working I think it’s the NICE guidelines at the time. Though they may of changed since I was on it.
I had DTPace after PAD and that didn’t work for me either as you know I’ve not had much luck with the different treatment tut. I then went on to Revilimid…[Read more]

Great news David.
Let’s hope the good news keeps rolling in for you.
I got my latest PPs result yesterday and they’re down to 11.25 not a very low reading but for me a great result. That’s the lowest they’ve been since diagnosis! Guess the new treatment must be working a bit 😉 long may it continue.

Every day is a gift

Andy

Hi David
I’m planning on keeping on flying to Greece as long as I can David. I thought the latest trip there might of been the last after the bad start to the year I had but I’m feeling ok again now and we’ve already booked for our September trip. Steph has cut her hours to a 4 day week so we may get a few more trips away in the British Isles too.…[Read more]

Hi Helen
There’s nothing planned for my back at the moment. We got warned about spinal cord compression and the need for speed of treatment if I get symptoms of it.
My last MRI showed some more damage to a couple of vertebrae including one I had kyphoplasty on. The radiotherapy I had earlier in the year has relieved the pain I was getting.
The…[Read more]

mmm, third post in succesion that refers people to myelomacrowd. Though no doubt very useful, do they have more info than Myeloma UK?

Hi Everyone

I suppose as I have been on here 3 years I am an older now,as some of the people who use to post,there partners or themselves have passed away,

I always use to reply to a new comer even if it was just a welcome,but a lot of general information has changed in three years,so I am out of date with new info.plus it really bugged me,when…[Read more]

Hi Karrieanne, I read your post with interest. An earlier post describes life after diagnosis as having the sword of Damocles over your head. Which feels about right. It really is not easy not to think about it, I find it is the first thing in my head when I wake up and last thing in my head as I go to sleep. But I was diagnosed only a few weeks…[Read more]

Hi Susie,

I hope you are feeling reassured, good luck with the exercises. I will be interested to know how you get on.

Best wishes Karen

Nice to hear from you Princess Fiona

My husband says my daughters are clones of me!!!!but I see them as children I am very proud of,so cannot complain.they hate to hear that they are like there mum. Lol

We had good news today,Slim is coming home tomorrow ,have arranged Slims new appointment at the Marsden,thought I had arranged with consultant…[Read more]

Hi John

Without are lovely Dai it has gone flat,a great loss,.

Hope your still laying cement without to many aches and pains,may it go on for a long time,
Never asked you what part of mersyside do you come from,or are you a wooly back!!!!!
Eve

Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and…[Read more]

Hi Susie, I have read a little on the internet as my Consultant had said don’t wait until I have pain before rescheduling appt if any changes. Changes he suggested were really quite subtle and related to renal function.

One of the American sites says it is important to tell your doctor straight away about any new pain as they might want to xray…[Read more]

Hi Graeme, sorry to hear you have chicken pox, I think the vesicles are infectious until they dry up and scab over. With chicken pox they tend to come out in crops. I used Calamine Lotion for the itching with my sons.

Hope you feeling OK and they settle quickly.

Kind regards

Karen