https://forum.myeloma.org.uk/members/docmike/activity/ Activity feed for michael ashton. Sun, 12 Apr 2026 20:43:41 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 3936170f4402762a8157f0f93a482efa https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/3/#post-137452 Fri, 23 Mar 2018 01:44:08 +0000 Hi all,
I have survived and am 7 weeks post transplant ;bald and not shaved for weeks but energy returning .Probably have bronj in two sockets in lower jaw but onwards and upwards ,bisphosphonate related osteonecrosis of the jaw .
Mike

]]> e37b5e4928db2a05bb35b9193068e04e https://www.myeloma.org.uk/forums/topic/curcumin-6/#post-137450 Fri, 23 Mar 2018 01:08:22 +0000 Dear Paul,
I am taking curcumin as I recover from my second asct .
My research lead me to an article on cucurmin absorption;Journal of the american college of nutrition vol34;4 p 347 to 358; Beyond Yellow Curry ;assessing commercial curcumin absorption technologies by BRad J Douglass & D L Cloutare.2015
The conclusion was that the hydrophilic…[Read more]

]]> 111455c663dc74141ef250a8a5de9ae5 https://www.myeloma.org.uk/forums/topic/heart-problems/#post-137072 Thu, 08 Feb 2018 12:23:35 +0000 Dear Herma ,
I know from personal experience Chemo can effect the heart but usually only on a temporary basis (?six weeks?). Protein around the heart is very unlikely to be related to chemo or indeed myeloma but may due to a related condition called amyloidosis . Further information is available on this website but you should get further…[Read more]

]]> 3dac51fe435367ea46d3427b546f6e9d https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/3/#post-136594 Mon, 08 Jan 2018 16:24:55 +0000 Well there you go Nice has approved IRd after 2 treatments via the cancer drugs fund; six months too late for me but ive got my paraprotein down to 2.8 on Rd.
Had 5 teeth out prior to my second asct which is booked for next wednesday 17th .
Mike

]]> 876fb1f6ae437063d4a46d78b4aeb6c2 https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/3/#post-136251 Wed, 29 Nov 2017 17:42:25 +0000 hi all,
Change of plan ; my response to Rd has plateaued so I am having a further month of treatment but with less steroids prior to my second asct in january .Not exctly what i wanted but there seems less point in adding ixazomib at great expense . I am still very angry about the circumstances which prevented me getting triple therapy for free…[Read more]

]]> f0c9a96a7a4a51a3734187d29b096f86 https://www.myeloma.org.uk/forums/topic/maintenance/#post-135945 Wed, 15 Nov 2017 21:22:31 +0000 Dear Susie
Not that I am aware of but still investigating .Unless in a trial or in an area where they ignore nice maintenance seems unavailable and the long term cost make this very unlikely despite evidence from a uk trial myeloma X1 . This has to change but how?
Michael

]]> bfdcc6a790481cb32cc3841fdc2c7d31 https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/2/#post-135940 Wed, 15 Nov 2017 14:57:40 +0000 Dear Ann, ,Teresa
I would be grateful if you could let me know the location of your hospitals ( Adrian in southampton ?jan t in northern ireland ) where you have received triple therapy ird under the cup scheme.I need to quote this intially to my consultants .
Dear Ann I am also interested in the possibility of your husband been given…[Read more]

]]> ba7cf247dc54470f93489786295575fc https://www.myeloma.org.uk/forums/topic/newly-diagnosed-mgus/#post-135309 Thu, 05 Oct 2017 17:56:27 +0100 Hi Yvonne ,
I can understand your concern having had smouldering myeloma myself at presentation in 2008 . I am sure i have written many posts on this in the past (possibly as docmike?).
Very briefly 10% of smoulderers never progress to myeloma and if you go 10 years as a smoulderer you risks drop down to mgus levels which is 2% per year. The…[Read more]

]]> 9101a6f7afb5309f48137db1fb99f39e https://www.myeloma.org.uk/forums/topic/curcumin-case-report/page/2/#post-135127 Sat, 23 Sep 2017 00:04:15 +0100 Dear Anne ,
Thank you for your update it highlights the need for a reliable source with good bioavialability ;after that pharmacogenetics , pharmacokinetics and pharmacodynamic studies in patients together with the genetics of an individuals myeloma will help reach the goal of personal tailored therapy ( yes that is a long term process but thats…[Read more]

]]> d0f32cdee0ee82d63b897de2e1756422 https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/page/2/#post-134478 Thu, 03 Aug 2017 10:18:42 +0100 Dear All,
Myeloma uk are aware of the problem of nhs england restricting the FREE access to ixazomib to add to the Rd regime (Named patient programme)by threatening to withdraw funding for the latter regime (alternative go private and pay for it yourself?).Fortunately this potential block has been ignored or got round in some areas as your posts…[Read more]

]]> c8f93795210adff3631133a72feb256b https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/#post-134425 Fri, 28 Jul 2017 00:09:42 +0100 Dear Teresa.
I had my sct in November 2015 relapsed in march this year (not good high risk ??)just finished my fifth course of Rd.and slowly responding -1 every month. I am very pleased your husband is on triple therapy IRd (and which therefore does not include cyclophosphamide or thalidomide )as initial therapy and outside a trial? But…[Read more]

]]> 68b80715c1318b53ff0465621f002c71 https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/#post-134413 Thu, 27 Jul 2017 15:09:00 +0100 Hi Ann,
I applied for adding ixazomib to rev/dex and was successful under the Compassionate use programme offered by Takeda and was expecting to start tomorrow ;the drug having been in the pharmacy for over a week . I am now told NHS ENGLAND has stepped in with an edict saying they will not fund lenalidomide if I do so .So I assume this is a…[Read more]

]]> 8c74c4f96d38e8f65b0a8967ae7eb2fe https://www.myeloma.org.uk/forums/topic/curcumin-case-report/#post-133644 Wed, 31 May 2017 22:07:22 +0100 Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma…[Read more]

]]> ba50f07bc14b69f333a30ad2c8473c28 https://www.myeloma.org.uk/forums/topic/curcumin-case-report/#post-133623 Tue, 30 May 2017 22:01:54 +0100 Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma…[Read more]

]]> ba50f07bc14b69f333a30ad2c8473c28 https://www.myeloma.org.uk/forums/topic/curcumin-case-report/#post-133623 Tue, 30 May 2017 22:01:54 +0100 Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma…[Read more]

]]> ba50f07bc14b69f333a30ad2c8473c28 https://www.myeloma.org.uk/forums/topic/curcumin-case-report/#post-133623 Tue, 30 May 2017 22:01:54 +0100 Hi Jan,
Thank you for the tip and indeed I have listened to the radio 4 programme (b08rpd85)a few minutes ago .Again I think it confirms that we are that point where the evidence for the potential use of curcumin in myeloma cannot be ignored or indeed supressed .There clearly needs to be both well conducted trials in specific phases of myeloma…[Read more]

]]> eeb7181a1f0777e45c188b4bf2de92c4 https://www.myeloma.org.uk/forums/topic/side-effects-of-ninlaroixazomib/#post-133509 Tue, 23 May 2017 22:41:00 +0100 I am hoping to go on ixazomib so have no experience but as retired consultant physician( gastro not respiratory ) i do know that asthnma (test peak flow meter ) ?better on dexamethasone day ??? or gastroesophageal reflux (trial of proton pump ihibitors) are two causes of chronic cough relatively easy to exclude .
Mike

]]> 0ef5f6fa2481ef7545f4b56265807734 https://www.myeloma.org.uk/forums/topic/curcumin-case-report/ Thu, 18 May 2017 11:12:29 +0100 BMJ Case Reports 2017 doi:10.1136/bcr2106-218148 by A Zaidi Maggie Lai(myeloma uk ) J Cavanagh
Long term stabilisation of myeloma with curcumin
In brief , this describes the spectacular effect of curcumin in a patient with advanced disease who had run out of convential therapeutic regimes , not least because she had neutropenia and was unable…[Read more]

]]> dc3d8046c889f584d81cbd571b0dabfd https://www.myeloma.org.uk/forums/topic/curcumin-case-report/ Thu, 18 May 2017 11:12:29 +0100 BMJ Case Reports 2017 doi:10.1136/bcr2106-218148 by A Zaidi Maggie Lai(myeloma uk ) J Cavanagh
Long term stabilisation of myeloma with curcumin
In brief , this describes the spectacular effect of curcumin in a patient with advanced disease who had run out of convential therapeutic regimes , not least because she had neutropenia and was unable…[Read more]

]]> e89c15975a82f98cebff8dd37a5cace2 https://www.myeloma.org.uk/forums/topic/secondary-mgus/#post-133270 Wed, 03 May 2017 14:33:21 +0100 Dear Sue ,
Congratulations on your brilliant detective work which required both endeavour and courage . As a doctor who has had myeloma 8 years and who therefore has searched the literature I admit i d not come across secondaru mgus . Thank you .
However it confirms my view that I have held for 12 years(long story )that patients forums are a very…[Read more]

]]> 3a98a2545a277eb9a660285bf510be6e https://www.myeloma.org.uk/forums/topic/possible-mgus-very-scarred/#post-132309 Wed, 15 Mar 2017 22:49:41 +0000 Hi Rachel
If your next 2 tests(?over the next 3 months) still show a paraprotein of 3 (+/-3 the test results do fluctuate im afraid)you most likely have mgus but by that time you should have seen a haematologist who will have arranged the appropriate tests (//bone marrow and skeletal survey )to confirm this .The risks of mgus turning into…[Read more]

]]> d5558b6db67b5e38cc4e173efcd8ba7d https://www.myeloma.org.uk/forums/topic/daratumumbab-and-high-risk-smm/#post-131527 Fri, 13 Jan 2017 20:43:17 +0000 This general reference explains about daratumumab (which has until recently been used in relapsing/refactory patients who tend to have poorer response rates and tend to have more aggresive disease becuase of previuous multiple treatments and the passage of time)…[Read more]

]]> 81a6e247c3f56abfb6b31bcd52957255 https://www.myeloma.org.uk/forums/topic/daratumumbab-and-high-risk-smm/#post-131488 Wed, 11 Jan 2017 23:53:08 +0000 Hi Jane,
This is exciting and thankful news for smoulderers ,relapsers and potential relapsers .I stand corrected but this seem a very recent development so experience uk wise must be limited.But it is not a chemotherapy type agent but an antibody such that allergic reactions are possible.
Having had smouldering myeloma before going onto standard…[Read more]

]]> 5927b23774e8ab160bd75966b02ee89c https://www.myeloma.org.uk/forums/topic/reflections-of-a-smoulderer-of-6years/#post-130306 Tue, 01 Nov 2016 21:17:34 +0000 post script
I have recently had chance to review my results over the years preceding active mm and now note that there was a slow rise in the free kappa light chain about 18 months before the m spike started to rise .This has been reported before in mayo clinic usa retospective study on mgus and smm.
I am in remission nearly a year post sct. m…[Read more]

]]> 0bf869e5c52e185801154bb47b449f19 http://www.myeloma.org.uk/forums/topic/smouldering-and-lifestyle/#post-127126 Tue, 08 Mar 2016 00:06:53 +0000 hi mark ,
I went skiing for about 6 years whist smouldering but had mris and dexascans and the opinion of osteoporosis expert to confirm my risks were minimal and my insurance excluded myeloma . I also played tennis until my myeloma kicked off when i stopped but continue to play golf which surprisingly is seen as an impact sport ??? As far as i…[Read more]

]]> d6dabcafc473b090da9750561fb10540 http://www.myeloma.org.uk/forums/topic/heart-and-skin-complications-with-autologous-sct/#post-126950 Mon, 22 Feb 2016 00:12:27 +0000 Skin complications
on day 44 I developed what was thought to be drug rash but this did not respond to antihistamine or hydro cortisone cream or indeed 4 other types of lotion. The rash was very red and the skin was swollen with very bad itching at night and shivering like sunburn reaction .It eventually settled on a second course of steroids,…[Read more]

]]> dac423c65a51d57da8cdc00f87d3e6b4 http://www.myeloma.org.uk/forums/topic/heart-and-skin-complications-with-autologous-sct/#post-126949 Sun, 21 Feb 2016 23:52:04 +0000 Hi Karen.
My bone marrow showed 7% plasma cells in the trephine (5% in aspirate) compatible w ith residual myeloma /partial response but I am on double blind trial of maintenance therapy with 60% chance of receiving izaxomib. My mprotein fell to 9 before the trial suggesting some ongoing delayed effect from asct .
Low blood pressure could well…[Read more]

]]> e9e572b9e1f6623054246e75d0e8ddd6 http://www.myeloma.org.uk/forums/topic/heart-and-skin-complications-with-autologous-sct/#post-126940 Fri, 19 Feb 2016 08:17:23 +0000 reference European Journal of Heamatology vol 89 ppp 228-235 JS Bleeker et al

]]> f7428b2902d361d331ee2baff4e7f8ea http://www.myeloma.org.uk/forums/topic/heart-and-skin-complications-with-autologous-sct/ Fri, 19 Feb 2016 08:12:10 +0000 Hi
Ive been on this forum for over 7 years but mainly contributed to the smouldering section.Suffice is to say that last year thing progressed and after a partial response to sequential ctd and vcd i underwent an autologous sct in early november .I subsequently had two complications worthy of discussion.
On day 30 ish I felt repeatedly very…[Read more]

]]> cd0626acaed165d44e19a59d2285d534 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/5/#post-126938 Fri, 19 Feb 2016 07:29:55 +0000 Hi Rebecca,
I am about to describe my heart complications on the side effects thread but if your resting pulse is 50 it suggests your are very fit (do you run marathons perhaps??) and that there is no heart damage . I cant get me pulse below 80 yet altho things are improving and I have no cardiac symptoms but just feel unfit which is perhaps…[Read more]

]]> 85b099820d16f9573bc891b70484bdeb https://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/5/#post-126872 Wed, 10 Feb 2016 18:35:42 +0000 Dear All,
day 98 post asct
I am starting to feel better despite my first persistent cold but it has not been plain sailing but I will discuss this elsewhere on separate threads on side effects (skin and heart complications).
I have still only achieved a partial response ,albeit the sequential samples post asct have shown a fall in the m protein…[Read more]

]]> 193d927f91beea48a88c0c9e0a916a0d http://www.myeloma.org.uk/forums/topic/reflections-of-a-smoulderer-of-6years/ Mon, 26 Oct 2015 23:43:27 +0000 As promised some time ago I think I should share my thoughts on smouldering ?asymptomatic myeloma having watched the literature for over 6 years .The bullet points are ;
There needs to be a UK database for all patients with Mgus and Smouldering myeloma;genetic studies from uk patients at diagnosis and onset of active myeloma should help…[Read more]

]]> c2ebcefb263b8d22f516d8d55ddcd5dd http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-124735 Mon, 26 Oct 2015 21:57:02 +0000 Thanks Karen and Dawn and I hope all is going well with you both .I go in for my ASCT next Monday 2/11
Mike

]]> 9e054247741d1bf412568e2224d83768 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-124520 Mon, 05 Oct 2015 21:25:12 +0100 After five cycles of vcd my M protein having dropped to lowest ever of 14 rose again to 16 .So I have to accept that I have partial response only after both thalidomide and bortezomib and am now proceeding to ASCT asap.
Mike

]]> 5f8000eb2583251def777a7b89b3fb16 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-123790 Thu, 27 Aug 2015 00:21:01 +0100 After 2 injections of velcade M protein fell from 19 to 17 so hopefuly thing are going in the right direction again,slowly as anticopated with velcade ?
Mike

]]> 8f3e825dbaf8c07447c16ba5636eaedc http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-123547 Thu, 13 Aug 2015 23:30:53 +0100 Dear Dawn,
I am pleased you are doing well and hope all goes well in the future .Do you visit O2 day ward ? I visit mondays and thursdays for my velcade 2 weeks out of three (VCD off trial ) . CTD was stopped working halfway (at PR just ) after 4 cycles .I was offered to come off trial and get VCD for certain which I chose.
I am better…[Read more]

]]> e39525045b3b9b6de32c6f3632168d42 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-123220 Tue, 21 Jul 2015 23:53:00 +0100 Thank you all.
I feel better off the thalidomide ( tremor better ,symptom which is only of interest to a gastroenterologist seems to be changing direction, .inertia gone )
but steroids now keep me awake and very hungry, hence the time of this email and more. I hope the stem collection goes well KP .
In retrospect I am now on the same…[Read more]

]]> 03cc3a9132f332f62403792f3ae123de http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/4/#post-123057 Mon, 13 Jul 2015 23:03:01 +0100 Well things turned out differently.My next two results showed a plateau response due to thalidomide stopping working. So after four cycles I was given the option of coming off the trial and going on VCD for certain ,which was my wish .
So day 1 today Velcade/cycl/dex
So off thalidomide and heparin but still on steroids which cause most problems…[Read more]

]]> 1e969c08d5737712b97c9ba4d076b9c1 http://www.myeloma.org.uk/forums/topic/pain-i-cant-get-rid-of/#post-122666 Tue, 16 Jun 2015 00:33:43 +0100 Dear Tm.
I understand your dilemma and there are lots of grey zones in our understanding of smouldering myeloma .But you a have had all the tests available which could detect myeloma bone disease assuming the neck problems are cervical spondylosis related ( which btw i have also) . The pet scan is very sensitive hence the colonic polyp detection…[Read more]

]]> 8fb4f0263f3e24fd9dc0226fea811489 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/3/#post-122665 Mon, 15 Jun 2015 23:22:27 +0100 Hi Dawn,
You seem to be heading for a complete response but sorry about the chest infection.
I will find out on thursday my results from three weeks ago which was near the end of second cyle but only a week after last result of 19 so hoping for lower double figutre or less.Like you if thats the case, I will to try to gat a provisional date for Sct…[Read more]

]]> 459c44375aa18c61c2696134132120b9 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/3/#post-122355 Mon, 01 Jun 2015 20:22:25 +0100 Good news;my paraprotein has gone down from 44 to 19 after four weeks of ctd.
Muscle tremors ,tetany on some days due to low calcium /zometa only side effects so far .
Mike

]]> b5aec563c35cada4f421be08a7d4095c http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/3/#post-122142 Thu, 14 May 2015 23:20:42 +0100 Hi all.
Ive just commenced my second three week cycle of ctd.So far I only know my hb has risen from 110/11.1 to 122/12.2 after two weeks of tx which I regard as a good sign.
Great news Dawn your heading for an excellent response to tx
Yvonne , I am pleased bloods are stable.But note some heamotologists regard recurrent serious infections( eg…[Read more]

]]> 11f03c34114d67bc889be1ad66f9ec22 http://www.myeloma.org.uk/forums/topic/lytic-lesion-still-mgus/page/2/#post-121854 Mon, 20 Apr 2015 21:40:22 +0100 Dear Yvonne,
A negative Pet scan may give you reassurance.
mike

]]> c96dbc9d3088f528d222234bed097fe3 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/2/#post-121820 Fri, 17 Apr 2015 00:17:17 +0100 Welcome ALI
I am about write retrospective review on my experience of smouldering for 6 and half years which answer some of you queries
Mike

]]> 61849f94ea1213f7bfbd47220d0f0352 http://www.myeloma.org.uk/forums/topic/just-joined/#post-121819 Fri, 17 Apr 2015 00:10:00 +0100 Hi Marian,
Welcome to the smoulderers/mgus forum which was set up relatively recently because there was a need to address the specific problems we encounter.
Your queries are not new so I will try to answer them .
Light chains ;
In your bone marrow you have an excess of abnormal plasma cells which produce abnormal immunoglobulins /paraprotein/M…[Read more]

]]> 03f1af45ae28a1550e955278ad471a8d http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/2/#post-121540 Thu, 02 Apr 2015 20:16:51 +0100 Dear Carol,
Thank you.I am aware about the neuropathy of thalidomide,I hope yours is resolving .
Mike

]]> 86955067e350434716022b61f0fb4b93 http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/2/#post-121490 Mon, 30 Mar 2015 17:37:27 +0100 Hi all,
HB dropped to 11.1 before zometa infusion(flu like reaction 36hrs after)
Enrolled for myeloma x1but on CTD
Start 22/4
Mike

]]> 382770338ff83c8f821e7a46470ac7ee https://forum.myeloma.org.uk/activity/p/38203/#acomment-38227 Thu, 19 Mar 2015 23:01:11 +0000 hi Dawn, I am interested you have started on myeloma x1 as I was told the criteria for entry is one of the “crab” features and does not yet include the two new treament criteria ;flc ratio >100 or bm plasma cells>60 %.or has your creatinine put you into teh significant renal impairment criteria ?
Mike

In reply to - cartdaw posted an update @docmike Hi mike heading for treatment next week. Got the info for the myeloma x1 trial. Light chains have jumped to 7,000. From October when they were 2,000. Everything else stable. […] ]]> 1f308865a72ee567eaee4bbc12a7173a http://www.myeloma.org.uk/forums/topic/heading-for-treatment/page/2/#post-121314 Tue, 17 Mar 2015 20:42:27 +0000 Dear Jane
My light chains are rising but below 100 and ratio below 50
Mike

]]> 9dc7100ca81b404314fcc21417f8c0fe http://www.myeloma.org.uk/forums/topic/treatment-for-slumbering-myeloma/#post-121295 Tue, 17 Mar 2015 00:42:13 +0000 Dear Sean.
Smouldering myeloma has it s own thread
If you hb is less than 10 or has dropped by 2gm since november you have the criteria for active mm.In the uk you would most likely be offerd to go myeloma x1…[Read more]

]]>