Yes definitely remind your specialist that you have bone damage at low progression of light chains. Believe it or not they often forget and you have to go through your entire myeloma medical history to remind them. Especially if like we do, you have an unusual profile of low or non-secretory.

Because you are non-secretory I would push for regular…[Read more]

Hi Chris

I’ll talk about the Radiotherapy first. I find it does help in snuffing out discomfort from lesions, my specialist also tells me that the effects aren’t just therapeutic but also help to prevent the spread of the disease. So might be worth talking to your specialist about that.

I have an MRI scan every 6 months to keep track of my…[Read more]

I’m afraid this is what you get when you vote in a party hostile to the very idea of the NHS and who is prepared to give a 3 billion yearly tax cut to 1% of the country’s millionaires. It doesn’t help that we have health tourism but the 1 billion figure quoted above is hugely contested with independent organisations putting the figure at £110…[Read more]

I’m afraid this is what you get when you vote in a party hostile to the very idea of the NHS and who is prepared to give a 3 billion yearly tax cut to 1% of the country’s millionaires. It doesn’t help that we have health tourism but the 1 billion figure quoted above is hugely contested with independent organisations putting the figure at £110…[Read more]

Peanuts.
2 years ago the government gave millionaires a tax cut that equates to 3 billion a year. The cancer drug fund costs 280 million a year. Like millionaires really need a tax cut.

Neither of these new drugs were accepted into the cancer drug fund

Yes I get a hoarse voice too. It normally resolves a week or so after my Dex burst (I tkae it at the beginning of every month fro 4 days)

Dear Annette, Finn
Thanks for the insights and experiences.
I found an old (still in date) box of domperidone anti nausea tablets and they’ve been quite effective at snuffing it out. I’m seeing my specialist tomorrow and will talk it over.

As a follow up Celgene have told me that there is no published research that shows Revlimid is impacted by coffee or alcohol. They have no idea where Myeloma Beacon got the information from but they did send a very detailed letter describing all it’s known interactions.

Thanks Jeffery

I’ve been scheduled 20mg of 2mg Dex every 4 days so 80mgs a week in total. I believe the standard dose is double that but the specialist thinks for me this should be ok.

Just to let people know I’ve contacted Celgene (who make Rev) directly to ask about caffeine and alcohol consumption impacting treatment so will report back.

Andy I’m delighted for you. Pom seems to be doing the job great stuff.

Thanks to everyone who has taken the time to reply and read.

Unfortunately now officially confirmed, the MRI scans show what my consultant called a “tiny but measurable” increase in the size of a rib lesion. I’m out of remission after only getting 14 months from my SCT.

I’m going to have a small amount of radiotherapy to zap the lesion and then…[Read more]

Hi Karen
my latest bloods were all negative as was my BM from a couple of months ago. however this was the case at the original diagnosis too so I’m not going to get ahead of myself. I don’t secrete, I don’t show except in MRI. my myeloma is a tricky bugger.

Thanks to everyone who has replied. I’ve got my MRI this morning so I’ll get a sense of where things are soon.

I found this on Myeloma beacon it’s a Medic’s reply to a similar situation. As with all Myeloma issues it’s a complex picture:

Chronic pain sometimes becomes an issue with the destructive lesions. Adequate pain control is very…

[Read more]