[CharlotteParticipant]

Hi Liz – thank you very much for replying.
I seem to have had "no visible paraprotein, no Bence-Jones protein" since finishing radiotherapy, which judging by what people are saying here makes me very lucky.
I'd be very interested to know how you feel about the spinal fusion, if you don't mind answering…? namely: was it a big operation? Did they do it at the same time as the kyphoplasty, or later? Do you notice any restriction in the movement in your back as a result, and does it feel to you as if your spine is weak at L5, or does it feel well supported?
All the best,
Charlotte

[CharlotteParticipant]

Thanks, David. Glad to know you're doing well. I hope your check-up was fine.
I also broke my back getting out of bed, to answer the phone – the insurance company who'd called me ended up calling an ambulance!

I've wondered about scaffolding. They wanted to put it in at one point, but I resisted as I couldn't face another op at that time, and wanted to see how I would get on once my muscles had recovered. I was also worried that it would mean I couldn't have MRIs, but I gather titanium means this isn't a problem…? Anyway, my back is generally fairly okay, but sometimes it does ache a lot, and I do wonder whether having that internal support would mean I didn't have this. There's no guarantee it would, though, so for now I don't plan to ask them to do it; I'll save that pleasure it for some later date. :-/

All the best,
Charlotte

[CharlotteParticipant]

Thanks very much for your reply, Ellen. I was getting quite worried that no news was bad news. I suppose it's a bit too much to hope that someone is going to come on here and say "I had a plasmacytoma 30 years ago and have been absolutely fine ever since!", but hey, you never know…

That's also partly why I wanted to post here and say that I'm doing well (so far), in case there's anyone else out there who's had it and is looking for good news. I guess, as a friend pointed out to me, people tend to come on forums like these when they have a problem, not so much to say that they're fine.

Similarly, when I was trying to find out how long it would take for the dex side-effects to wear off I found lots of posts all over the place about the side-effects but nothing at all about when, or even whether, they would go away! I told myself I'd go back and post something myself when I'd got through it, but never did so. (For the record, I was on between 10 and 24mg for about 3 months, had lots of – differently – nasty side-effects after coming off, and didn't de-puff completely for almost a year afterwards. But it did all go in the end.)

It's because plasmacytoma pretty rare that I thought of posting here. At least people here are fairly likely to know what I'm talking about, which is a start. Thanks for the links and the info; I'll take a look.

Best wishes,
Charlotte

[CharlotteParticipant]

Hi Louise,

I called several on the "cancer insurers" list I was given by the Maggie's Centre – I think it's on the Cancer UK website. They were all prepared to insure me, but most quotes were astronomical. In the end, though, I found Avanti, who were much cheaper than all the others (around £200, I think it was, for a trip to India – others were quoting me upwards of £1000!), and they're very nice and helpful.

I'm sure you're aware, though, that North America and the Caribbean are in the most expensive bracket – much more expensive than anywhere else. The premium will also of course vary according to the stage the disease is at, as well as age etc.

Personally, I'm determined to keep travelling and seeing the things and people I want to see, as much and as often as I am able, and I try to worry as little as (reasonably!) possible about having to pay more.

I hope you all have a lovely holiday.

Charlotte

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