Myeloma Forum | PeterGore | Activity https://forum.myeloma.org.uk/members/pjollop/activity/ Activity feed for PeterGore. Sat, 11 Apr 2026 23:27:57 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 44186736ed7a64d7927dfdd5c60e19aa PeterGore started the topic Sue Lloyd Roberts difference in treatment in the forum Treatment http://www.myeloma.org.uk/forums/topic/sue-lloyd-roberts-difference-in-treatment/ Fri, 26 Jun 2015 09:30:32 +0100 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

]]> 54c47fae4b9d5e47c0f771a4fa70ebef PeterGore started the topic Dr Brian Durie discusses diet for people with Myeloma. in the forum General http://www.myeloma.org.uk/forums/topic/dr-brian-durie-discusses-diet-for-people-with-myeloma Sat, 04 May 2013 12:45:53 +0100 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

]]> 2f1bdecdec6ea24dcc736e0147d17aab PeterGore replied to the topic Risk of ONJ when on bisphosphonates in the forum Treatment http://www.myeloma.org.uk/forums/topic/risk-of-onj-when-on-bisphosphonates#post-102187 Thu, 21 Mar 2013 21:40:00 +0000 Agree with that sentiment, 😀

]]> 4c46742b61c18bfcaf38e4be48f19ce4 PeterGore replied to the topic Risk of ONJ when on bisphosphonates in the forum Treatment http://www.myeloma.org.uk/forums/topic/risk-of-onj-when-on-bisphosphonates#post-102185 Thu, 21 Mar 2013 20:27:22 +0000 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]

]]> 4d78f03882b25c4b937fdc773b4e5460 PeterGore started the topic Risk of ONJ when on bisphosphonates. in the forum Treatment http://www.myeloma.org.uk/forums/topic/risk-of-onj-when-on-bisphosphonates Thu, 21 Mar 2013 13:38:39 +0000 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]

]]> e470fbaa52cf7645c4a146f606185596 PeterGore replied to the topic Travel Insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance#post-90804 Thu, 21 Mar 2013 12:20:50 +0000 …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)

]]> 082792ac8cebeaaa68e36e3791b0eef7 PeterGore replied to the topic Disability Living Allowance in the forum General http://www.myeloma.org.uk/forums/topic/disability-living-allowance/page/3/#post-94536 Thu, 21 Mar 2013 12:14:12 +0000 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]

]]> ed648aa3cc6dde047c0c95e9f3b738dd PeterGore replied to the topic Least is best - or more is best in the forum Treatment http://www.myeloma.org.uk/forums/topic/least-is-best-or-more-is-best#post-101150 Sat, 08 Dec 2012 11:37:54 +0000 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]

]]> b9027f4c40b427fefd453b55a60aba8e PeterGore replied to the topic Least is best - or more is best in the forum Treatment http://www.myeloma.org.uk/forums/topic/least-is-best-or-more-is-best#post-101148 Sat, 08 Dec 2012 11:24:16 +0000 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]

]]> 2aec91437d7460c51479829b585bc5d3 PeterGore replied to the topic Travel Insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance#post-90802 Sat, 08 Dec 2012 11:08:23 +0000 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]

]]> 553910d313788be769dbfbc60071c2ca PeterGore started the topic Least is best - or more is best. in the forum Treatment http://www.myeloma.org.uk/forums/topic/least-is-best-or-more-is-best Fri, 07 Dec 2012 12:34:42 +0000 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]

]]> a7af752f2609db632ccc801b91c9170b PeterGore replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1345471879#post-93380 Sun, 02 Sep 2012 12:39:51 +0100 Try able2travel on 0845 839 9345
good luck.
peter

]]> 8dd963ad7b3eba2ed935d1ad8a791830 PeterGore replied to the topic Insurance in the forum General http://www.myeloma.org.uk/forums/topic/insurance#post-92576 Mon, 07 May 2012 10:46:00 +0100 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]

]]> 21d850589c1e4fe8a58319e2c7aa938d PeterGore replied to the topic Another 3 months in the forum General http://www.myeloma.org.uk/forums/topic/another-3-months1333128671/page/2/#post-92423 Mon, 07 May 2012 10:30:45 +0100 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]

]]> 9b2648c16f042b6f7ab1ebe6a0e1f5d6 PeterGore replied to the topic Insurance in the forum General http://www.myeloma.org.uk/forums/topic/insurance#post-92573 Wed, 25 Apr 2012 12:41:03 +0100 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

]]> 14c8e4f3e9d914bcce7f2c3d262e18e4 PeterGore started the topic Why Myeloma keeps coming back - an explanation.. in the forum General http://www.myeloma.org.uk/forums/topic/why-myeloma-keeps-coming-back-an-explanation Sun, 22 Apr 2012 11:10:07 +0100 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]

]]> f49cdde978b7349d504311012e47a793 PeterGore replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1327064755#post-92076 Sun, 12 Feb 2012 10:46:49 +0000 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]

]]> 4d0e58818606f1ab9515b36c5c814d25 PeterGore replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1327064755/page/2/#post-92079 Sun, 05 Feb 2012 12:05:18 +0000 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]

]]> 98035d2cb535d950c90b9f3ffdc07101 PeterGore replied to the topic Travel insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance1327064755#post-92070 Thu, 26 Jan 2012 12:16:12 +0000 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]

]]> 5b42a5c873231075a74c78509a809df7 PeterGore started the topic The future looks Great for us....(N.I.C.E. permitting !). in the forum General http://www.myeloma.org.uk/forums/topic/the-future-looks-great-for-usnice-permitting- Sun, 18 Dec 2011 12:07:08 +0000 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]

]]> 8f02af87519458400e1e11a460ad74de PeterGore started the topic A possible breakthrough - the JQ1 research. in the forum General http://www.myeloma.org.uk/forums/topic/a-possible-breakthrough-the-jq1-research Wed, 02 Nov 2011 10:58:33 +0000 This is a video that is certainly interesting and hopefully groundbreaking (there is a specific referance in the video to a new treatment for Myeloma at 11mins in – but I suggest the whole video will interest anyone with cancer.)

http://tedxtalks.ted.com/video/TEDxBoston-Dr-Jay-Bradner-Ope-2

Good luck to all,
Peter

]]> b06b1a5dbd2093282f1c89651285589b PeterGore replied to the topic Birmingham Info Day Important info Cheap Hotel in the forum General http://www.myeloma.org.uk/forums/topic/birmingham-info-day-important-info-cheap-hotel#post-91575 Sun, 23 Oct 2011 12:50:33 +0100 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 )

]]> 61bab6e2e5ff070616f14a638499596f PeterGore started the topic Birmingham Info Day Important info Cheap Hotel. in the forum General http://www.myeloma.org.uk/forums/topic/birmingham-info-day-important-info-cheap-hotel Sat, 22 Oct 2011 12:24:33 +0100 For those who are attending the Birmingham info day on Nov 26th and wish to stay overnight the night before, you may be horrified by the quote I have had for 1 person/1 night of £160. (there is no group discount)

3 miles away is the Hotel Ibis birmingham airport (postcode B26 3AW)
I have just booked I room/1 night at £62.70 (incl breakfast) J…[Read more]

]]> 0724759978ad3961ec131ab42ad39d26 PeterGore replied to the topic Latest ideas on Myeloma treatment fro Dr Jim Berenson in the forum Treatment http://www.myeloma.org.uk/forums/topic/latest-ideas-on-myeloma-treatment-fro-dr-jim-berenson#post-97927 Sun, 21 Aug 2011 12:12:52 +0100 Hi, Kidney function was very low requiring dialysis. My general recovery from the auto sct – and indeed the kidneys – took 3 months of constant improvement in strength and appetite. The really tough time was when I was in hospital having the stem cell transplant…but when look at that against the 18 months of quality life I've enjoyed since, I…[Read more]

]]> c6d0c6626b3ec673b8695a65bd16b2b0 PeterGore replied to the topic Latest ideas on Myeloma treatment fro Dr Jim Berenson in the forum Treatment http://www.myeloma.org.uk/forums/topic/latest-ideas-on-myeloma-treatment-fro-dr-jim-berenson#post-97925 Sat, 13 Aug 2011 12:05:08 +0100 Hi Badger and all. I did have an auto sct despite having poor kineys. They gave me the Melphalan over 2 days instead of 1 to help the kidneys. (I did tell them that I didn't want to end up on dialysis for the rest of my life and they adjusted drug doses to take account of my wishes)

It was a rough month, and a 3 month return to strength but…[Read more]

]]> 0aeb331efa67beb80db3b134e838074d PeterGore started the topic Latest ideas on Myeloma treatment fro Dr Jim Berenson. in the forum Treatment http://www.myeloma.org.uk/forums/topic/latest-ideas-on-myeloma-treatment-fro-dr-jim-berenson Sun, 07 Aug 2011 13:22:33 +0100 Hi, Here is a link to a video of Q & A's with Dr Jim Berenson.

Some health warnings:
1. He is in the USA
2. He is a leading expert and he has his own views on how treatments are used and which to use. There are other experts with different views.

http://goo.gl/GAx0g

]]> f135c6da4b025690251bfc6248fa93be PeterGore started the topic Photo exhibition by Myeloma patient.. in the forum Off topic http://www.myeloma.org.uk/forums/topic/photo-exhibition-by-myeloma-patient Wed, 13 Jul 2011 20:57:10 +0100 Press the 'play' symbol when this loads.
enjoy !

http://www.bbc.co.uk/news/in-pictures-14126913

]]> dfab19aaf0f6cf1caa6d3994e6bcafa2 PeterGore replied to the topic Velcade Subcutaneously? in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-subcutaneously1309615873#post-97707 Mon, 04 Jul 2011 22:40:20 +0100 hi, Badger, what is UCH ?
My understanding at the moment is that it isn't licenced for use Sub Q by the [u]FDA[/u] Why are we waiting for the Americans when (as I understand it) the research was done by Prof Gareth Morgan [u]in the UK[/u]. I really do not understand what is going on when this research would [b]seem[/b] to radically improve the…[Read more]

]]> 12068a382a217d83032a3dc1630fe1fb PeterGore started the topic Velcade Subcutaneously?. in the forum Treatment http://www.myeloma.org.uk/forums/topic/velcade-subcutaneously1309615873 Sat, 02 Jul 2011 14:11:13 +0100 Hi,
Is there anything that we as patients can do to hurry up the approval of getting Velcade Subcutaneously?

Considering that it is said to be just as effective this way but with fewer side effect you would think things would be progressing faster.

It would also seem to save the NHS money in shorter treatment times (saving nursing hours and…[Read more]

]]> 30720d544a9675c29c9685b4608b6470 PeterGore replied to the topic Daily Mail Article in the forum General http://www.myeloma.org.uk/forums/topic/daily-mail-article#post-90151 Sat, 02 Apr 2011 12:04:38 +0100 I knew if I waited long enough I'd come into fashion 😀

]]> ff9d8ac0ca265faadb9bd0ce51f2fdfd PeterGore replied to the topic Remission and risk of infections in the forum General http://www.myeloma.org.uk/forums/topic/remission-and-risk-of-infections#post-89499 Mon, 07 Feb 2011 21:48:09 +0000 I've read a suggestion from a doctor about Vics 1st defence and intend trying it if I ever get round to going on a flight. It might be a good idea for others to try if they are flying to a holiday destination. (please post results) 🙂

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