pjollop started the topic Sue Lloyd Roberts difference in treatment in the forum Treatment 9 years, 5 months ago
I see that the journalist sue Lloyd Roberts has acute myeloid leukaemia and is looking for a donor match for a stem cell transplant. She is 63. So why can she have a donor sst when a myeloma patient of the same age would’nt be offered one ?
(I am not suggesting any preferential treatment )
Thanks
Peter
pjollop started the topic Dr Brian Durie discusses diet for people with Myeloma. in the forum General 11 years, 6 months ago
Just click on this link:
http://myeloma.org/MtEntryPage.action?source=/imf_blogs/myeloma_voices/index.html
I'm delighted to see that red wine gets the 'thumbs up'
The Broadcast shoud be available via http://www.bbc.co.uk/programmes/b006qnx3
Good luck all.
Peter
pjollop replied to the topic Risk of ONJ when on bisphosphonates in the forum Treatment 11 years, 8 months ago
Agree with that sentiment, 😀
pjollop replied to the topic Risk of ONJ when on bisphosphonates in the forum Treatment 11 years, 8 months ago
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…[Read more]
pjollop started the topic Risk of ONJ when on bisphosphonates. in the forum Treatment 11 years, 8 months ago
I found some information that suggests that there may be a blood test that will tell you your risk of getting ONJ (Osteonecrosis of the Jaw) when taking Bisphosphonates like zometa. I would treat this with some caution until we've had some comment from the medics we know…but it [b]is[/b]interesting. Does anyone have any more info.
There are…[Read more]
pjollop replied to the topic Travel Insurance in the forum General 11 years, 8 months ago
…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)
pjollop replied to the topic Disability Living Allowance in the forum General 11 years, 8 months ago
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…[Read more]
pjollop replied to the topic Least is best – or more is best in the forum Treatment 11 years, 11 months ago
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…[Read more]
pjollop replied to the topic Least is best – or more is best in the forum Treatment 11 years, 11 months ago
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…[Read more]
pjollop replied to the topic Travel Insurance in the forum General 11 years, 11 months ago
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…[Read more]
pjollop started the topic Least is best – or more is best. in the forum Treatment 11 years, 11 months ago
Hi, I am posting this link to a recording of a web broadcast by dr James Berenson. He is a leading expert on Myeloma in the USA but takes a different approach of 'less is more'
He stopped doing Stem Cell transplants some time ago claiming that they were too rough on the patient, and says that he can get the same results with better quality…[Read more]
pjollop replied to the topic Travel insurance in the forum General 12 years, 2 months ago
Try able2travel on 0845 839 9345
good luck.
peter
pjollop replied to the topic Insurance in the forum General 12 years, 6 months ago
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…[Read more]
pjollop replied to the topic Another 3 months in the forum General 12 years, 6 months ago
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…[Read more]
pjollop replied to the topic Insurance in the forum General 12 years, 7 months ago
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
pjollop started the topic Why Myeloma keeps coming back – an explanation.. in the forum General 12 years, 7 months ago
I'm posting this link because, although it appeared in Jan 2008, it is the best and clearest explanation of why Myeloma keeps coming back, and how it survives.
http://www.sciencedaily.com/releases/2008/01/080111123313.htm
I would like to know what success there has been (since 2008) in addressing the root of the problem rather than 'cutting…[Read more]
pjollop replied to the topic Travel insurance in the forum General 12 years, 9 months ago
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…[Read more]
pjollop replied to the topic Travel insurance in the forum General 12 years, 9 months ago
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…[Read more]
pjollop replied to the topic Travel insurance in the forum General 12 years, 10 months ago
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…[Read more]
pjollop started the topic The future looks Great for us….(N.I.C.E. permitting !). in the forum General 12 years, 11 months ago
This link takes you to 3 short videos on the latest from the American Society of Haematologists meeting which has just ended. I found the one by Dr Gertz to be the easiest to follow – but try any or all.
They're very uplifting (of course we still have to get these developments adopted here – so keep lobbying)
I've checked the link for nasties…[Read more]