Agree with that sentiment, 😀
My situation is that I have toothache and need an extraction or two after having been on Zometa for 3 years. (They are not stopping zometa after 2 years like they used to) I've been off zometa since the end of October .'
[b]my[/b] information (and that of my haemo consultant) is that the risks of osteonecrosis decrease greatly after you have been off it for 3 months. The hospital maxilofacial unit say that because the drug has a 'half life' in the body for 10 years (true)
The risk of osteonecrosis is there for 10 years. This would seem to leave me on paracetamol painkillers for 10 years. Novartis (who distribute the drug) will not talk to me.
In my view the situation in the uk regarding zometa is unacceptable. There is no clear information as to the risks (as you can see from the above) . The same doseage is applied to all although clearly every patient does not [u]need[/u] the same doseage or regularity and there is no monitoring of bone density or other testing to try to match the patients requirement to the regularity of treatment or amount of doseage.. In the USA they are tending to reduce the dosing after two years to every 3 months.
Please forgive this diatribe, but constant toothache makes me grumpy !
My best wishes to you all…
And may the medics get their acts [u]together[/u] !
Peter
…and have just had 30 days in Thailand with insureandgo at £150 (67 year old man in C.R but with 4 compression fractures….Not on any medication)
Hi, You [u]do[/u] have to meet some criteria. For the care element you need to have to have near constant personal care. For the mobility element you need to have very restricted mobility. I think its either ability to walk less than 100 ft or 100 yards, I can't remember.
I suggest that if you think you [u]should[/u]qualify, contact your nearest MacMillan centre and ask for a referral to a benefit advisor. (or the Citizens advice bureau – often the same advisor)
Myeloma in itself does not qualify you for DLA. (after all, LIFE is a terminal condition) This illness affects different people in different ways and with varying severity. The advice I got was to answer questions honestly based on the worst scenario (i.e. when I was on Chemo ) not on how I was when in remission. Although with Myeloma your condition varies from year to year (sometimes month to month)it is not feasable or possible to dip in and out of the benefit.
If your mobility is impaired and you are refused DLA mobility element, you may be able to get a Blue badge from your local authority by filling in the relevant form supported by a declaration from your doctor / consultant
Hope this helps
Yes Tom I agree. But to a great extent our treatment is decided by N.I.C.E whereas in the States the insurance companies fund the drugs in the doses and combinations that the individual consultants want to use.
On the subject of SCT, I took the view that 1 month of severe discomfort was a fair price to pay for the 2 years (average) of quality life on little or no medication. (Everyone is different but I am still in Complete Remission 3 years after mine)
But I do sense a change in the attitude of some consultants who are now also taking into account side effects and quality of life – and I posted the link to promote the idea that maybe we should at least look at the alternative of using less medication (possibly for longer) if that can be shown to have similar results, and consider alternatives to those treatments which have the most severe effects on the body.
Good luck with your sct, It certainly worked for me !
Hi, The page is a bit slow to load but when it does…there is a big green logo saying 'Cure panel Talk' with a picture of Doc Berenson. …a bit of writing under that then an oblong box labelled "blogtalkradio. In the middle of that box there is a white bit – and on the left side of that is a right pointing arrow 'play' symbol. the intro (by an asian woman is a little indistinct but doesn't contain any vital info. After that 3 mins or so (you can skip it by clicking on the progress bar if you wish) the sound quality improves.
enjoy!
Peter Gore
I was always checking the specialist insurance companies that make a virtue out of covering people with pre-existing conditions, but taking a wild punt I just got a quote from "Insure and go" 0844 888 2787 which beats the lot. (£160 for Three weeks in the Philillipines for a 67 year old man in C.R but with 4 compression fractures….Not on any medication)
might be worth including them in yournext ring-around for travel insurance!
cheers.
Peter
Try able2travel on 0845 839 9345
good luck.
peter
Since it is nearly summer holiday time….I think a new factsheet on travel insurance would be really useful because as times change – so do the best insurance companies. (Some on the existing factsheets gave me the highest quotes) I Suggest travellers check the travel insurance quotes and info on this thread. It looks like a great selection.
Remember:
Please make certain that your myeloma and its effects are covered if thats what you want.
You can reduce the cost by excluding insuring luggage or personal money (often, after you've paid the excess theres not much benefit)
In Euro community countries you can still use the EHIC card (but it doesn't cover repatriation)
Bargain [b]hard[/b] (if you are going to europe and have an ehic card tell them you have one.)
Enjoy!
Peter
Well Done! I'm playing the same game. 28 months in now – no sign of pp or light chains. 😀
My immune system is a bit of a mess – just getting over a 4 week hacking cough that antibiotics finally saw off. I'm wondering what goes on…I know the white blood cells return after SST but that doesn't mean the immune system is working? (I have been told that the immune system remains 'compromised' but I have yet to hear or understand the mechanics of this)
Good luck all – lets have some sun now so we can all top up our vitamin D !
Have just returned from 3 weeks in Philippines. Insurance £60 a week.
I am in remission after Auto SCT 28 months ago. 65 years old,
£180 for 3 weeks single trip worldwide (excl usa canada carribean) Excl personal effects (the contents of my suitcase are less than the excess)
The Myeloma and any effects are covered. Able2travel 0845 839 9345
Yup, I found USA travel is a no no from the point of view of travel insurance (More specifically: USA, Canada and the Carribean)
I've never found a way round it and given the huge costs if anything goes wrong, couldn't contemplate travelling to those areas without it.
As you can see from my quote, even the Far east (Singapore Thailand India and worldwide generally is such a different matter. Its Bizarre ! (but then, insurance companies [u]are[/u] !
Jet, try Able2travel You need to phone so they can ask their questions on 0845 839 9345 (see my quote in my earlier post on this subject)
It works out to about £60 a week for a worldwide trip (exc USA etc) That is covering your Myeloma …treatment…repatriation etc. Your quote is pretty good since your medical condition is a bit more problematic than mine (in remission after sct – slight kidney impairment only) but on the other side I'm over 65 and you are much younger !!!!
I excluded my suitcase because my clothes are worth less that the excess, I also exclude personal effects because they are covered on my house contents insurance (where they [u]don't [/u] ask if I have any illnesses. )
They are regulated by the FSA and are the best I've found so far – but I'm waiting for someone to post a better deal/company Re: the previous post about being covered by First Direct bank…I'm with them for banking but they told me that their insurance would [b]exclude[/b] the myeloma and anything they could attribute to it – so that would be broken bones, all infections, any falls etc…in other words: no cover at all !
Good luck in your search and your holiday.
peter
Yes. £180 for 3 weeks single trip worldwide (excl usa canada carribean) Excl personal effects (the contents of my suitcase are less than the excess)
The Myeloma and any effects [b]are[/b]covered. Able2travel 0845 839 9345
[b]Could other posters on this subject please make clear if their insurance is [u]covering their Myeloma snd any effects, infections,spinal problems or hospitalisation caused by it[/u] or are insuring them [u]excluding[/u] the Myeloma. They don't always make it clear until you read the small print or specifically ask them on the phone.[/b]
Having been to a couple of info days I strongly reccomend them as a great information and social event – as much a good day out meeting people in a similar situation as a fund of positive and useful information.
(the 'pjollop ' was one of my army nicknames derived from my first two initials of PJ )
