To put the other side of the coin, I think I had exactly 2 months in a smouldering status, then my PP level went over 30, which, combined with some lytic lesions in my skull, led to treatment starting. 8 1/2 months and 2 different chemo regimes later I’m almost back down low enough to consider stem cell harvest. As someone said higher up, every…[Read more]

There’s a community here which is obviously long-established. Unfortunately it doesn’t seem to welcome newcomers, which is the reason I gave up posting. I hope it will prove useful to some. You need a thick skin to persevere, though.

Have a great weekend together!

The infosheet is here: http://www.myeloma.org.uk/information/myeloma-uk-publications-list/living-well-with-myeloma/diet-and-nutrition-infosheet/

Nick

Andy,

I don’t think I’m playing Russsian roulette with my health, and I’m not sure that kind of emotive language is helpful. I don’t tend to eat much in the way of seafood etc. that carries high risk anyway. I just wanted to put the other side of the coin for Sarah who had been warned about a great long list of foods, and wanted to know if others…[Read more]

Sarah,

We got all the scary food advice as well. I’ve mostly ignored it and carried on eating what I normally eat. I’ve found my skin is a little bit more sensitive than normal, and my digestion has been put out of whack by the drugs, but I don’t think I’ve suffered from eating any particular foods or from any infections acquired during cooking…[Read more]

From my point of view going through chemo at present I would say psychological support is as important as or more important than physical. Physical help is easily measured – if he can’t do something, you may have to help. I personally can do most things albeit a bit more slowly and with attendant fatigue so I try to get on and do so. Encourage M…[Read more]

Ah, thanks Ted. You’ll notice I didn’t say I don’t know what Light Chains are, just that I don’t know what my figures are – not quite the same thing. In fact I’m not sure if they’re being measured or not (Edit: from reading the leaflet on the test available here, I’m pretty sure they’re not, but also that it’s not so relevant for me anyway with my…[Read more]

Good luck to Colin, sounds like he has had a tough time but is in a good place now. Unfortunately I’m still learning the terminology, no idea what my light chains value is or even what pps is, but hopefully not something I need to worry about or they would have told me? What do I need to ask….?

SCT has been presented to me not exactly as a fait…[Read more]

I’m hoping so too, Harmony. Stinks, doesn’t it! 🙁

Thanks for the welcome, Mavis. What made you decide against SCT – was it the high intensity chemo?

I’m not sure how long I could expect to stay stable after just the CDT – my paraprotein levels were shooting up before I started on the chemo – around 3 per month. When it got to 31 the decision was taken out of my hands, more or less.

I was…[Read more]

A captcha on the signup form will trap a good proportion of them as they are signed up by bots (automated programs), or by humans from other cultures who don’t necessarily understand the content of the site they’re joining up on. So a question like “What does the first M in MM stand for?” or something along those lines would probably filter most…[Read more]