Myeloma Forum | PhilKelly | Activity https://forum.myeloma.org.uk/members/PhilKelly/activity/ Activity feed for PhilKelly. Tue, 07 Apr 2026 19:26:34 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 64511581a6c404eb56d283822b42974d PhilKelly replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/6/#post-112164 Thu, 23 Jan 2014 13:31:46 +0000 Hi Chris… drop me a note at

Phil.kelly2@btinternet.com

and I will send you the link,

Cheers,

Phil

]]> 04bb844f5cf05f6c3a2dab7e0f24de53 PhilKelly replied to the topic Keith Hindmarch in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/keith-hindmarch1367593561#post-108239 Sat, 04 May 2013 11:06:46 +0100 So sorry to hear this, I was lucky enough to meet Keith several times through MMUK and he was such a good guy. In fact I think Keith was the first person I ever spoke with at a Myeloma info day and it helped me greatly finding someone so down to earth at a time when I was still in denial about the whole thing.

]]> e55201a1f852983b0b6959a6270aa01f PhilKelly replied to the topic Travel Insurance in the forum General http://www.myeloma.org.uk/forums/topic/travel-insurance#post-90800 Thu, 10 Jan 2013 10:55:09 +0000 Hi all…. got the shock of my life yesterday… found cheap travel insurance with the AA on line.

A week in Vegas for me and Mrs K cost us only £19! I was on the verge of signing up with another best offer of £120 with http://www.payingtoomuch.com
then chanced it with the AA. Fully declared my Myeloma (2 x SCT and in remission). This time l…[Read more]

]]> 9531c6951c25f87c0625e7cae8a4291b PhilKelly replied to the topic New myeloma suffer - would like to meet other suffers in the forum Under 50s http://www.myeloma.org.uk/forums/topic/new-myeloma-suffer-would-like-to-meet-other-suffers#post-107001 Wed, 04 Jul 2012 16:48:18 +0100 or email Phil: phil.kelly2@btinternet.com

]]> c331acd6547a97345a0e34243752c1b0 PhilKelly replied to the topic Tiredness /Fatigue in the forum Treatment http://www.myeloma.org.uk/forums/topic/tiredness-fatigue#post-99661 Wed, 04 Jul 2012 16:45:57 +0100 Hi Keith, sorry to hear you have hit the rocks again. I did get passing out symptoms on Velcade and it turned out to be nerve damage caused by the Velcade in my parasympathetic nervouse system…. that affects your blood pressure response to things like standing up. It is known as Postural hypotension… basically your body doesn't react quick…[Read more]

]]> 8bc3036343a21b61de07dab71679813c PhilKelly replied to the topic Another newbie in the forum Under 50s http://www.myeloma.org.uk/forums/topic/another-newbie1298918176#post-106839 Wed, 02 Mar 2011 10:05:29 +0000 We are up for anarchy and resistance at any age …… Justt have to keep sweariness off here! Send me a note if you want to have a look in. Phil

]]> 58bf5bbc9868917b339173ecdfdae0b7 PhilKelly replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience/page/2/#post-103732 Fri, 25 Feb 2011 09:32:21 +0000 Thanks discussed with doc that muscle stuff in legs is more likely steroid related than V.

]]> c43a18cf8954c2ce5716eb5a6c78a268 PhilKelly replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience/page/2/#post-103735 Thu, 24 Feb 2011 14:34:54 +0000 Hi Keith, know where you are coming from resenting the myeloma coming back just when you get back on track….. I was really lucky getting 4 years out of my SCT but ironically I was feeling good for the first time when it came back! I have been SO determined to keep doing stuff this time…. Tho its getting harder. Jealous of your platelet counts!…[Read more]

]]> d9736f6c94af71a1731f716651d43701 PhilKelly replied to the topic Velcade Experience? in the forum Side-effects http://www.myeloma.org.uk/forums/topic/velcade-experience/page/2/#post-103730 Tue, 22 Feb 2011 07:00:17 +0000 Hi Keith, good to hear its going ok. Have just started cycle 4 of V and the fatigue effects see to be cumulative. Worse tho they seem to be harder to predict when bad days will hit. Still way easier than CVAD though.

Anyone else had muscle weakness with V?

]]> 0c51a2bcb3c249605f35f95027fd0fff PhilKelly replied to the topic Alive and gigging.... in the forum General http://www.myeloma.org.uk/forums/topic/alive-and-gigging/page/2/#post-89670 Fri, 21 Jan 2011 08:07:53 +0000 Dai, great news…. Go for it! Best thing I have done since getting ill! Keep us posted, Phil.

]]> f2ea21c24d1ea602506f1999de3ffaf1 PhilKelly replied to the topic Alive and gigging.... in the forum General http://www.myeloma.org.uk/forums/topic/alive-and-gigging/page/2/#post-89668 Thu, 20 Jan 2011 06:08:04 +0000 No worries on the bone biopsies but did come close to leaping off the trolley last summer when they tried to start liver biopsy without sedation!

]]> 87b5c4f0b91be962891d5eec0e752f47 PhilKelly replied to the topic Alive and gigging.... in the forum General http://www.myeloma.org.uk/forums/topic/alive-and-gigging#post-89661 Tue, 18 Jan 2011 17:29:57 +0000 Great to hear….. You just gotta go for it….. The amount of cash I have spent on new amps etc is a closely guarded secret!

]]> e61f1135553d44c6443d3f12426abc91 PhilKelly replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/2/#post-106779 Tue, 18 Jan 2011 12:30:16 +0000 Hi Wendy and sorry you need to join the gang…just send me a note at phil.kelly2@btintinternet.com
and you will receive an invite to join. I just need your email address to do so. Phil

]]> c9ab3e869ef8e01e72a6103a2ffcb975 PhilKelly replied to the topic Alive and gigging.... in the forum General http://www.myeloma.org.uk/forums/topic/alive-and-gigging#post-89659 Tue, 18 Jan 2011 12:28:05 +0000 …weddings, bar mitzvahs and acoustic greenhouse openings all considered! Especially if home made wine on offer. I rediscovered my stash of 15 year old home made port at Christmas…an absolute revelation! it was undrinkable about 6 years ago!

]]> 7b1456e69d710403204ca344b21d74b3 PhilKelly started the topic Alive and gigging..... in the forum General http://www.myeloma.org.uk/forums/topic/alive-and-gigging Mon, 17 Jan 2011 21:15:01 +0000 Relapsed in October after 4 years post SCT remission, but thought 'Myeloma my Ar*e, got the band back together, rehearsed on the steroid highs and set up our biggest gig ever….

Here is a nice vid of a special night (huge thanks to Don at Sweet Pictures…. If anyone needs a video shooting look no…[Read more]

]]> ca40ee9af3c8acf5ccbe0f39cdd4351c PhilKelly replied to the topic Pomalidomide in the forum General http://www.myeloma.org.uk/forums/topic/pomalidomide/page/3/#post-89559 Mon, 17 Jan 2011 21:03:32 +0000 Hey Keith, they aint gonna get us yet! Feeling rough today so will respond properly
Soon

]]> d72ad12a2d8c2c05bf9a231e1272ca1a PhilKelly replied to the topic Relapse official in the forum General http://www.myeloma.org.uk/forums/topic/relapse-official/page/3/#post-89476 Mon, 17 Jan 2011 18:21:03 +0000 Me too! Bad luck mate, hang in there! Phil

]]> 3de4acd410bdc5cbb797fd70786e4ede PhilKelly replied to the topic Pomalidomide in the forum General http://www.myeloma.org.uk/forums/topic/pomalidomide/page/3/#post-89557 Mon, 17 Jan 2011 16:54:12 +0000 Hi Keith and Gaye, been away for a while so interested to see how you are both doing. Good news on getting the drug Gaye, good luck with it! Keith…. Sorry to hear about the relapse….. My relapse hit in October last year and I am mid 2nd cycle of Velcade….. Way nicer than CVAD! But starting to feel a bit drained…. Let me know if you want to…[Read more]

]]> f8ca3ab31b45932b77b46c84ed6087f6 PhilKelly replied to the topic The Under 50s Group in the forum Under 50s http://www.myeloma.org.uk/forums/topic/the-under-50s-group/page/2/#post-106776 Sat, 15 Jan 2011 17:14:18 +0000 Or drop me a note and I can invite you in at
phil.kelly2@btinternet.com

Phil

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