Hi Molly,

Welcome to the site. Sorry you’ve had such a ride of it so far, but I think you’ll have a very positive experience with the NHS and myeloma. Obviously I can’t speak for everyone but in general I get the impression people feel we get excellent care – I do.

On financial aspects, get in touch with Macmillan – you can book a call with a…[Read more]

Hi jeff

There should be no problems asking your consultant for a second opinion, Slims consultant did not hesitate ,I think it is normal procedure when your own hospital feel they can do no more, we had no problems,and were seen by new consultant within 3 weeks. Be prepared to travel as it involves going out of your area.

We still go to see the…[Read more]

Dear all
Having received the diagnostic bombshell of myeloma, given the available treatment options ..trial of RCD and Velcade if no response or current gold standard treatment…CDT, I left the haematology dept and went to do my homework.
This was 37 months ago. I agonised over the data, I work in a uni so trawled the medical library… I fully…[Read more]

Hi Dick,

My husband has been awarded payments under the PIP. We think he had a relatively easy time of it compared with other stories we have heard. One thing I would strongly recommend is talking it through, or even maybe completing it, with a Macmillan benefits advisor – you can speak to them on the phone, it doesn’t have to be in person. If…[Read more]

Hi Andy

I had a good sleep last night,Slim was a usual,up most of the night,but occasionally my body fails me,I make up for all the sleep I loose. It is the Chemo brain that causes,the inability to retain information,he can not do complicated crosswords any more.

Has anyone said how the Pomilidomyde is working?????and how do you feel about it in…[Read more]

Sorry Andy

Taking over post again!!!!women pirates.
You can have a Dex fuelled rant lol.Love Eve

Hi Dick

That’s a good one,cannot even blame the booze as it’s morning,!!!!

I use an I pad all the time now,and know it looks like a slip of the finger because F and D are next to each other,but I honestly believe it’s predictive rather then slip of the finger,I am so lazy I do not read it again unless it,s red lined for unknown word.

I bet…[Read more]

Hi Andy

Did you notice it’s all women that turned out as pirates,I think it was Maureen and the sex bit???? Or some are not posting there own thread but when they come on to comment on some one else’s post,it’s so nice to here from them.

As Slims not much into a TV ,and his memory is not great on Chemo,so reading is out,except for papers,we have…[Read more]

Hi helen

Thanks for that. I’m in bed and when you post came through I went down stairs and read it to him. It has been a relief to him that you and Jane have had experience of this drug. He is sitting down stairs playing a game. Not the same man as yesterday when I posted he is more relaxed and prepared to go go on with the mds and not phone…[Read more]

Hi Jean
I’d been given Amitriptyline for the peripheral neuropathy, but when I got shingles at Christmas they trebled the dose to help with the neuralgia and it does seem to have had some effect though it took a while to get going. It might be worth trying the Lyrica just at night, see if that helps with the ‘zonking’. I had codeine, paracetamol…[Read more]

Bit of an “oops” for us too this weekend. M takes his temperature every evening and records it in his TEAMM trial book. Yesterday evening it was 37.6. An hour later it was 37.7. Hospital instructions are to phone if it is over 37.5, so we did, and M was booked in for the night.  They’ve given him intravenous antibiotics and antivirals and he’s in…[Read more]

Hi Tom and Jane

Thanks I talked Frank into taking another one today he was reluctant but it’s great what a bit of nagging can do. He took it this morning and he’s has been as high as a kite. I asked him if it eased the pain and he said no but he couldn’t give a ****. Should be fun when we go on to 2 a day. But he’s been good this afternoon and…[Read more]

Hi Liz

Some people have been on Revilimid for years and doing well,so let’s hope Kevin gets a good length of time,I think most of these drugs leave patients prone to infections as they batter all the cells not just the Cancer cells.

Well Slim has started second cycle,from now on it will be every week,he is holding on well,tired and all the usual…[Read more]

Hi Carol
I had my last zometa a week before SCT then it started again at the 3 month mark. It was stopped after 2 years, following MRI, as I have no obvious bone involvement… So if you have bone lesions the recent theory is to stay on it if there are no severe side effects.
Love Helen

Hi
At least your hospital are on the ball last time I had pneumonia at the clinic visit I told them I was struggling to breath they told me to take a few paracetamols in hospital for two weeks after that
good luck with the pomaliamide I do hope you make Greece in may
Try to keep well
regards Jox

Hi Carol

Frank had SCT March 2013. After 100 days all was good and they started him on Zometa. Had it for a couple of months and then his phosphate level dropped and Zommeta was stopped. Have him on meds to improve phosphates but they are not working yet so they are still with holding the Zometa till they start to rise

Hope all goes well for you
Jean

Hi Frances,

Like others have posted, I also started on my myeloma journey with odd pains in various parts of my body, which accumulated into spasms in my back which I suffered for some weeks even with strong painkillers. During this period, I was being investigated for possible causes of the pain and underwent x rays, ct scans, and ultra sound…[Read more]

Hi Jeff

Myeloma UK supply a diary (free) which gives lots of segments. Eg blood results. Theses are pre printed for you to fill in and at start of section gives you the normal range. You can see at a glance what the bloods are doing. There are different sections – questions to asker, appointment etc. I have been using these diaries for nearly 8…[Read more]

Hi

Well I can only think it must vary around the country.

Never had any problems getting any results bloods or diagnostic test,if fact on the odd occasion like this morning doctors have asked me can they photostat results they have not had!!!!.
I do carry a large red file,up to date and in order,so if Slim has an emergency admission,or like…[Read more]