Myeloma Forum | Alice | Activity https://forum.myeloma.org.uk/members/alicenorth/activity/ Activity feed for Alice. Thu, 23 Apr 2026 05:50:41 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 3fb147e9420da221f14714299a4eca20 Alice replied to the topic News about Wendy Duffield in the forum Under 50s https://www.myeloma.org.uk/forums/topic/news-about-wendy-duffield/#post-135596 Wed, 18 Oct 2017 22:18:47 +0100 Jet

I am so sad and upset to hear this awful news. I followed Wendy’s blog and was aware that she hadn’t posted for a while. I had thought of her recently and wondered how she was doing. I had always admired how she still got on life, enjoying new adventures. I am glad you and she were able to do that. Wendy was a wonderful writer. She had that…[Read more]

]]> 5b0e12cea79163737b9f2a22fb92eabc Alice replied to the topic Peripheral Neuropathy - Leg and ankle pain... in the forum Side-effects https://www.myeloma.org.uk/forums/topic/peripheral-neuropathy-leg-and-ankle-pain/#post-135321 Sun, 08 Oct 2017 09:52:00 +0100 Hi Robert, I am currently on cycle 6 of VCD, after relapsing.

How wouldcyou describe the pain you are experiencing?

I’ve had pain in the back of both calves and knees intermittently but over the past few weeks, mainly in the back of my right calf and almost permanently. I’ve never thought that it might be peripheral neuropathy though. I assumed…[Read more]

]]> fbbaa993c1d5179f1a043bbfb6609306 Alice replied to the topic SCT OR NOT in the forum General http://www.myeloma.org.uk/forums/topic/sct-or-not/#post-120498 Fri, 23 Jan 2015 00:47:25 +0000 Hi Amanda

i am 46 and was diagnosed 4 years ago. I had 6 cycles of CTD and reached complete response. I have delayed having a SCT although I did have my stem cells collected. I had to push for this option though. I think I made the right choice. But without a cytogenetic analysis of my bone marrow, I didn’t know if I was high risk or not so it…[Read more]

]]> 557fd251a5e91a298fb50f1e349376fc Alice replied to the topic Tanning treatments in the forum General http://www.myeloma.org.uk/forums/topic/tanning-treatments/#post-119329 Thu, 06 Nov 2014 17:47:54 +0000 I think it’s the steroids that cause the sensitivity to sunlight. I would err on the side of caution and avoid any unnecessary chemicals whilst on treatment. Absolutely nothing wrong in your mum still wanting to look her best. One thing though, since being in remission and having various treatments at beauty salons, I’ve had some problems when…[Read more]

]]> 442284b6a37dfd0dc66dd00e12d79d49 Alice replied to the topic smouldering myeloma;IMWG update criteria to predict CRAB features . in the forum Newcomers http://www.myeloma.org.uk/forums/topic/smouldering-myelomaimwg-update-criteria-to-predict-crab-features/#post-119141 Tue, 28 Oct 2014 21:12:24 +0000 My understanding from talking to one of the myeloma UK nurses today is that although the IMWG is highly respected in the UK, the new guidelines are unlikely to come into practice with immediate effect. More likely, they will filter through over the next year or so. For this reason, there is no reference to the new guidelines in the news section of…[Read more]

]]> f058fac0a2eace0fecdf8993dfef95b9 Alice replied to the topic Smouldering myeloma in the forum Newcomers http://www.myeloma.org.uk/forums/topic/smouldering-myeloma-2/page/2/#post-119108 Mon, 27 Oct 2014 00:45:13 +0000 Hi Helen
I’ve just read your post about your diagnosis of asymptomatic myeloma rather than MGUS. I’m not a doctor, but If your paraprotein level is 8g/l rather than d/l, I’m struggling to understand why you are not MGUS, in view of your other blood results. Have you asked for a second opinion? Maybe talk to your GP about it?

Best wishes
Alice

]]> c3c685eb543b137f74ff46b51596f843 Alice replied to the topic Unexpected Results in the forum General http://www.myeloma.org.uk/forums/topic/unexpected-results/#post-119081 Fri, 24 Oct 2014 21:29:43 +0100 That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have…[Read more]

]]> 382447c9513aaa18d657884e2ac3ef84 Alice replied to the topic Unexpected Results in the forum General http://www.myeloma.org.uk/forums/topic/unexpected-results/#post-119081 Fri, 24 Oct 2014 21:29:43 +0100 That’s very interesting, Michelle and congratulations! I’ve heard of pp continuing to drop in the months after SCT, but not after such a long period as yours!

My situation is that I achieved a complete response after 6 cycles of CTD. I didn’t have SCT and until 3 months ago had been in CR for over 3 years. However, my last two blood tests have…[Read more]

]]> 94e445d2f969b925d6d7788053104c2c Alice replied to the topic The pain is back... in the forum General http://www.myeloma.org.uk/forums/topic/the-pain-is-back/#post-118169 Wed, 17 Sep 2014 12:48:18 +0100 Hi Tom

Are you absolutely certain about the pain? I only ask because I’ve read your blog previously and you mentioned how you start to feel pains, real or imagined as you come up to your hospital appts. Are you coming up for a review by chance? I’m not trying to make light of the situation because I absolutely know what it’s like to imagine all…[Read more]

]]> 4fbbc8b60c3b30d54901d2fca1f9c907 Alice started the topic The Scottish Referendum and Myeloma UK in the forum General http://www.myeloma.org.uk/forums/topic/the-scottish-referendum-and-myeloma-uk/ Wed, 17 Sep 2014 08:42:13 +0100 If the ‘Yes’ vote triumphs at the Referendum tomorrow, what are the implications for Myeloma UK, with the charity being based in Scotland, particularly in terms of funding research? Has this issue been discussed at all?

]]> bab580fd2b174da217b0ce6b904fda5e Alice replied to the topic Greece? Again! Oh and cycle ten in the forum General http://www.myeloma.org.uk/forums/topic/greece-again-oh-and-cycle-ten/#post-118157 Tue, 16 Sep 2014 23:21:28 +0100 Always a bugger, I find, when blood tests follow a good week of drinking fine wine 🙁 ah well, such is life!

]]> 80160a86f8f6c85f554db3c512b9cbd5 Alice replied to the topic Working in the forum General http://www.myeloma.org.uk/forums/topic/working/#post-117994 Sat, 06 Sep 2014 13:26:01 +0100 Hi Emma

I’m not as young as you – I’m in my mid-forties. Before diagnosis 3.5 years ago, I was working full-time. I was subsequently signed off by my GP and have not returned to work since. I haven’t had an SCT because of other complications, but I managed to achieve remission on frontline treatment. Although physically I’m okay (am fortunate not…[Read more]

]]> cba6a4914cc0a1c47929720937923328 Alice replied to the topic Eva Youren in the forum End of Life and Grief http://www.myeloma.org.uk/forums/topic/eva-youren/#post-117254 Fri, 25 Jul 2014 21:43:34 +0100 I a very sorry to hear of Eva’s passing. I recall that she was a very informed patient and made sure that she was getting the best treatment that was available to her, even though that meant flying down from Scotland. I remember being very much in awe of her dogged spirit. My thoughts are with her husband. Xx

]]> e371c15ead6ec90ab4b479e76aa119ea Alice replied to the topic Telling the kids in the forum Under 50s http://www.myeloma.org.uk/forums/topic/telling-the-kids/#post-116364 Wed, 02 Jul 2014 09:55:08 +0100 Hi Lisa

Thank you so much for posting this.  It is very relevant for my situation. I was diagnosed just over 3 years  ago, aged 42. My daughter was 4 at the time and in her first few weeks of  Infant school.  We have never told her anything. I was fortunate to get through CTD with minimal side effects. She was too young to even notice why I’d sto…[Read more]

]]> fc9ddd7e798026e40d95511fa1ab7b87 Alice replied to the topic Friendly reminder in the forum Newcomers http://www.myeloma.org.uk/forums/topic/friendly-reminder/#post-115780 Wed, 04 Jun 2014 23:16:13 +0100 I’m an occasional  lurker. I have to be honest and say that the reason I don’t contribute anymore is because of some “forthright” replies I received on a topic that the responder clearly didn’t agree with or had opposite views. They would have done better to have kept quiet, in my honest opinion. That and the new forum format has stopped me from…[Read more]

]]> a37750b30472f77b9b2659b05747b2c5 Alice replied to the topic Bisphosphonate post transplant in the forum Treatment http://www.myeloma.org.uk/forums/topic/bisphosphonate-post-transplant/#post-113595 Sun, 09 Mar 2014 01:45:15 +0000 I was diagnosed 3 years ago and have only had CTD. I am currently treatment free and in complete remission. the exception is monthly zometa. I have no bone issues. My understanding is that I have zometa because of its anti-myeloma qualities. Apparently, for this reason, I will be on it indefinitely, rather than just 2 years, which is the norm, apparently.

]]> ff30614afafa5d8052ae254b310d73bf alicenorth became a registered member https://forum.myeloma.org.uk/activity/p/1480/ Sun, 09 Mar 2014 01:40:39 +0000 0