Hi Karen

I had my bloods done a week before, but not all results back so I plan to ring on Friday for the rest of them.

So next time he said get them done two weeks before. It is the long wait in clinic I find hard, wondering if the sword of Damocles is going to drop.
The NHS is the best thing we have. Thank you Nye Bevan 🙂  but I suppose it…[Read more]

Well, another two hour wait, but another two months now before next monitoring appointment so all good.

Hope you all keep as well as possible

Kind regards

Karen

Hi, I didn’t know anything about this either so looked it up and found this:
A rare form of histiocytosis.

Associated with an abnormal antibody in the blood called a paraprotein.

Lipid levels are normal.

About 50% will have a malignancy of the blood; usually multiple myeloma or leukaemia.

Presents with large flat reddish-yellow plaques over…[Read more]

Sorry that you have to be welcomed to this site. I was / am on the myeloma XI trials. I was diagnosed in 2012. Had 5 months of drugs, had a couple of infections with hospital stays. Had the stem cell transplant in early February 2013. Opted for no maintenance drugs, remain on the trial and have a check up every three months. Para protein are at…[Read more]

Hiya Vicki
I wouldn’t worry about a one off raised reading. There’s loads of reasons why that could of happened from Colin’s illness to a mistake in the lab! Even if it is an upward trend it could take a long time before Colin needs treating. If Colin is feeling good and the rise isn’t causing any problems I think they’ll just monitor the…[Read more]

Hi Helen.
I hope my back holds out too.
You seem to have the rest of the year all sorted for trips away. We’ve not got anything organised till September. Which will be another week in Greece if everything goes to plan.
Steph has cut her hours down and now works a 4 day week.
Oh I went to the opticians the other day and got told I’ve a cataract…[Read more]

Hi Susie

I have just got home and read your posts and Jill’s responses. All I can add is that I contact my Consultant through his secretary, this is what he told me to do if I need to advise of any changes /concerns.  So first point of call might be to ring the hospital and ask to speak to the medical secretary for your Consultant, leave a…[Read more]

Oh Susie I am sorry to hear your news.
You are not hogging my topic. I like to think of it as a shared thread which hopefully we will all benefit from. So sending you a virtual hug and a big thank you for sharing your journey with me.

But on a more positive note I think Mike also said that MRI’s are being considered as very helpful in…[Read more]

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]

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