Hi Denise and Carol

It’s a sad fact this disease has a massive impact on all family members,most people know there is something wrong but when it’s diagnosed it comes as an awful shock,I think it’s because there are so many different symptoms,either bad backs,or broken bones,there are only 3000 cases a year in this country,then you get the…[Read more]

Hi James.
There are so many variables involved with myeloma that it’s hard to give you any information without knowing your circumstances.
That fact that you had Velcade then a SCT suggests you may of had kidney problems, that’s if Velcade was your first line of treatment. After your SCT you sound like you were put on a maintenance dose of…[Read more]

Hiya Vicki and Colin
Just reread your initial post. If your consultant is leaving it for 6 weeks before Colin’s next blood test I would say he’s not to worried. He probably thinks it’s blip caused by the infection but can’t come out and say it in case he’s wrong. The blip could also be caused in the lab because no two test can be exactly the same…[Read more]

Hi David.
It does bu**er about with your plans having to fit in hospital appointments around life. My memory ain’t what it was and I have to rely on Steph to keep everything flowing as smooth as possible.
Sorry to hear you prostate cancer is causing you problems.
Are you sure you just don’t have an aversion to dentists and your doing anything to…[Read more]

Hi Karen, sorry for interrupting your conversations. Almost from the start of my treatment, 2 plus years ago, I have been having my bloods taken by the nurse at my doctors surgery, about 2 weeks before my clinic appointment.
As I am on the myeloma XI trial I have bloods taken at the clinic before seeing the consultant.
Don’t you just love feeling…[Read more]

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]

Well, they do say that the three big risk industries for MM are Agricultural, Nuclear and Chemical. Looking at the amount of chemicals used in modern farming let alone in everyday products and the increase in radiation in the atmosphere since the 60’s the question really should be why haven’t more of us got it. Beter be careful, MM can be used to…[Read more]

Hi James

They like you to be 12 months clear and to have had a good response .nice guide lines is it’s allowed if you have had a good response .

Revilimid they usually use until it stops working.
Pomilidomide is the latest one coming out in trials.

When he says chemo!!! Is he talking just cyclophosphamide ????

You can go into trials on the…[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 Vicki

I know it’s really worrying and stressful when you see light chain numbers increasing. However, hopefully it’s just a blip due to Colin’s recent virus on his holiday. My light chains usually increase by 200 following a cold virus, but six weeks later they drop again sometimes back to their original number and sometimes just slightly…[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]

Hi Vicki

Sorry to hear you think it’s coming back,it is a bit of a blow and takes time to get your head round it,but you have to pick yourself up and get on with it.

If I was you I would try to fit a few more holidays in,because you just might go on watch and wait until treatment is needed,so make the most of your time now.

Worrying about…[Read more]

Hi Princess Fiona

Yes lucky to live in a lovely place,we usually take the dog for a walk along the sea front,on a clear day France can be seen.
Hope the children have a lovely time when they come and this beautiful weather holds for the rest of summer.

The hospital visit was not great,4pm appointment got platelets just after 6pm,I think some one…[Read more]

Hi Les and also Janey

They say grief has different stages ,the frustration of not being able to do anything,the anger that the death has caused,and the emotional side of coming to terms with everything that has gone on,some are able to talk about it many are not.

I do not think you can learn these things or get any experience until you go…[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]