[MothasParticipant]

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 MRI scans as these are a good way of spotting disease progression.

Good luck with it mate.

t/

[MothasParticipant]

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 disease — or whenever I feel there has been some kind of development. Recently I have started having a PET/CT scan as part of a Daratumumab trial I started around 5 weeks ago. The difference between the two is that an MRI shows historic damage the PET/CT shows active disease in real time.

I completely sympathise about your light chains as your situation sounds very similar to me. I get disease progression at low light chain rises which is unusual compared to many who see them in their thousands. The highest mine have been have been 300 but often in similar ranges to you. I think my advice to you would be to ask to see your specialist to talk through your concerns and you have to remind them that you get disease progression at low light chain rises and you are non-secretory. They often forget your myeloma history or profile.
It is quite possibly just a bit of a minor bump as they can go up and down a bit in a narrow range but I’d definitely be asking for at least an MRI scan or preferably a PET/CT.

hope this helps

tom

[MothasParticipant]

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 million to £280 million and others as little as 0.001% of the NHS budget. Jeremy Hunt himself declared in parliament that the figure was 10 million. Frankly it’s a sideshow and one the government is happy whip up as it distracts attention from the real issues.

https://fullfact.org/health/costs_health_tourism-37227

We are the 5th richest country in the world, health tourism or not we have more than enough financial assets to support this kind of treatment.

I will be writing to my MP and asking why the CDF fund hasn’t been adequately replaced, and why the government hasn’t kept its manifesto promise to continue to fund access to new cancer treatments.

• This reply was modified 9 years, 2 months ago by  Mothas.

[MothasParticipant]

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.

[MothasParticipant]

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

[MothasParticipant]

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)

[MothasParticipant]

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.

[MothasParticipant]

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.

[MothasParticipant]

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.

[MothasParticipant]

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

[MothasParticipant]

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 possibly on to a trial or failing that Lenalidomide/Revlimid. Consultant putting a brave face on it saying she’s got a number of patients taking it who have gone on for years without relapse, I’m also not a high risk myeloma patient and there is plenty of stuff in the pipe line.

After feeling the pain in my rib, I just knew it was back so weirdly having it confirmed is a relief. Annoyingly I feel really well. As Tom (snr) would say.
Onwards and upwards.

[MothasParticipant]

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.

[MothasParticipant]

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 important.

If there are new pains, even in controlled myeloma and on Zometa, it is worth having another look with plain X rays or MRI. New fractures (from old myelomatous lesions) can occur. One must also know that it may also be unrelatated to the myeloma or myeloma-induced bone disease — degenerative changes or the like.

[MothasParticipant]

Robert i take a supplement called POMI-T which is a combination of curcumin, Broccoli florets, Pomegranate seed and whole fruit and Green Tea. I take 2 a day, it has been clinically trialed and has shown benefits for prostate cancer sufferers. All the active ingredients also are supposed to be good for myeloma patients too although there is no clinical evidence that I know of to support this.

http://www.cancernet.co.uk/pomi-t.htm

you can buy it online.

I also eat a healthy diet, no processed or sugary food, lots of fresh fruit and veg, very little red meat. Most of my diet consists of beans, lentils, fish and some chicken once a week. I drink/consume very little dairy. I’m partial to the odd glass of wine or beer though so it’s not all bad!

[MothasParticipant]

Vanessa, yes I’d be interested in this.

Tom

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