Myeloma Forum | KerryDowell | Friends Activity https://forum.myeloma.org.uk/members/keznmel/activity/friends/ Activity feed for KerryDowell's friends. Sun, 05 Apr 2026 20:30:08 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 da3c65454e2fed4516ea7ff7f99025f9 tom and Mikejanulewicz are now friends https://forum.myeloma.org.uk/activity/p/54714/ Fri, 09 Nov 2018 09:57:16 +0000 0 2c167415bc89a7fabc26e0ba338c75e4 tom posted an update: @andyg oh oh am in I remembered it.....eventually lol.... https://forum.myeloma.org.uk/activity/p/54710/ Thu, 08 Nov 2018 13:07:20 +0000 @andyg oh oh am in I remembered it…..eventually lol….

]]> 0 09a3be01ad12f7e415c37cbb6c80d497 MavisNevill replied to the topic Osteonecrosis in the forum Related conditions https://www.myeloma.org.uk/forums/topic/osteonecrosis/page/2/#post-137899 Wed, 09 May 2018 23:55:25 +0100 Hi Jan

I do hope that you settle into the new drug regime and that it works to bring your PP readings down. Sympathise about the effect of the steroids. One thing I found though, is that it really helped my joint pain.

I waited to reply as I was seeing my Consultant today. My PP has just gone up by 1 to 10 in three months so no treatment…[Read more]

]]> 1829cb3f5de7c1738ac6f297731ba09d MavisNevill replied to the topic My Dad Passed Away in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/my-dad-passed-away/#post-137898 Wed, 09 May 2018 23:42:06 +0100 Dear Jennifer,

Welcome to this site. I am sure you will find it helpful. I certainly did in the early years of my diagnosis in 2010. You asked about staging of the disease. One thing I have learnt is, it doesn’t really matter. This is a very individual disease and everyone reacts differently to the treatment. I am so sorry your dad is r…[Read more]

]]> 6600ff42bc8cb65822237582786ca0f6 MavisNevill replied to the topic Osteonecrosis in the forum Related conditions https://www.myeloma.org.uk/forums/topic/osteonecrosis/page/2/#post-137793 Tue, 01 May 2018 07:19:41 +0100 Hi Jan and Michael

Thank you for taking the time to reply to my post. It is good to know that others are cheerfully coping with the Google’s this horrible MM throws at us.

I was diagnosed with Oesteonecrosis. I have to say that on this occasion the NHS has been marvellous to me. In less than a fortnight from my visit to the Dentist, I was s…[Read more]

]]> ea835d3967745c5264e7d06b80428265 MavisNevill replied to the topic Osteonecrosis in the forum Related conditions https://www.myeloma.org.uk/forums/topic/osteonecrosis/page/2/#post-137708 Mon, 23 Apr 2018 16:09:57 +0100 Hi Jan and others

I have found your posts very helpful. I have been on Zometa from about 2012 – four weekly until three cycles ago when I ask my Consultant if I could come off. I had read it stays in the system and was finding the logistics of getting to hospital for the infusions more and more difficult. I had one break of three months so I…[Read more]

]]> 3936170f4402762a8157f0f93a482efa michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Curcumin in the forum General 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]

]]> 8ce82ac6c2aa4c4b31215c79bd8e02af MavisNevill replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-137168 Mon, 19 Feb 2018 12:32:34 +0000 Hi Helen,
Thanks for the information. I’m glad that Thalidomide is working so well for you like it did for me. At the moment my PP is settling around 10 so thankfully no recommendations for treatment yet. Have also persuaded them to let me reduce the Zometa infusions to eight weekly. I just don’t want to be tied to hospital appointments I’d…[Read more]

]]> 111455c663dc74141ef250a8a5de9ae5 michael ashton replied to the topic Heart Problems in the forum General 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]

]]> 418322a0f1a127a68846c9e59043aebc MavisNevill replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-136607 Wed, 10 Jan 2018 10:58:58 +0000 Hi Helen
Happy New Year to you too. I was exhausted after Christmas having done two big services with help of crutches and perching stool!
Our lives have been made doubly difficult because Gordon isn’t at all well with heart failure and hand and shoulder pain which we have eventually found out is a boney spur putting pressure on a nerve in his n…[Read more]

]]> 3dac51fe435367ea46d3427b546f6e9d michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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

]]> 5b0c7705770d03a8eab414d8564d085a MavisNevill replied to the topic Having a nightmare with the palliative care plan. :( in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/having-a-nightmare-with-the-palliative-care-plan/#post-136531 Tue, 26 Dec 2017 00:59:11 +0000 Hi Ceri
Keep fighting for your mum. It’s the last thing you can do for her. Have you thought of involving the hospital Social Worker?
Lots of love.
Mavis xx

]]> 6afdc1a84e12c938a0d459899db0bcaa MavisNevill replied to the topic My Dad Passed Away in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/my-dad-passed-away/#post-136530 Tue, 26 Dec 2017 00:54:29 +0000 Dear Clover
I am so sorry to hear that this awful disease has taken your dear Dad after he gave it such a mighty battle.
I know it must be even more poignant to loose him at this time of year which is supposed to herald hope.
May you find comfort in many happy memories. Death never has the last word, love does.
Love to you and your family.
Mavis x

]]> 18cc0f38ba66cd3afbb1314f881279ff MavisNevill replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-136528 Mon, 25 Dec 2017 08:38:13 +0000 Hi Helen, Andy and everyone else out there!

A happy and peaceful Christmas.

We are so fortunate to still be here aren’t we. I always feel so grateful to all who took part in earlier Trials and to all the researchers.

I am still just on Zometa infusions. Wanted to come off them, but Dr agreed to 8 weekly instead of 4 weekly. He said this w…[Read more]

]]> b3844d529baa81480844c53fb06c59c2 EveProkop replied to the topic Missing my Nan, her story in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/missing-my-nan-her-story/#post-136304 Fri, 01 Dec 2017 18:56:16 +0000 Hello Kelly
It’s not often I come on to Myeloma UK, as I lost my husband over 3 years ago, but Myeloma as come into my life again ,as a friend has just lost her husband with Myeloma ,so I looked into the site.

First you have to know about a Myeloma, a doctor might only see it once in his life time,so GP seldom pick it up, usually it’s discovered…[Read more]

]]> 876fb1f6ae437063d4a46d78b4aeb6c2 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Maintenance ? in the forum Treatment 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 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Newly Diagnosed MGUS in the forum Smouldering myeloma / MGUS 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 michael ashton replied to the topic Curcumin case report in the forum Treatment 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]

]]> c5f3df6b920d804c071c0fd5087bc91c MavisNevill replied to the topic Where to from here - bone marrow has significant infection. in the forum Treatment https://www.myeloma.org.uk/forums/topic/where-to-from-here-bone-marrow-has-significant-infection/#post-134688 Wed, 23 Aug 2017 10:47:11 +0100 Hi

Just wanted to say it isn’t the end if you aren’t able to have a SCT. It is nearly 7 years since I was diagnosed. I had CDT and the went into resession. My paraprotein is now gradually rising, but it is good for me to know there are so many new drugs on the market now. Options are improving all the time.
I have a monthly Zometa infusion for…[Read more]

]]> 89d57950b79d9bbf5d3c3dd5890b175a MavisNevill replied to the topic I'm still here! in the forum General https://www.myeloma.org.uk/forums/topic/im-still-here/page/3/#post-134686 Wed, 23 Aug 2017 10:35:48 +0100 I just signed into page after a very long time. I think, like others, sometimes it just seems important to keep your head down and just keep plodding on! However, I do often wonder how you all are as after all we are the old staters now.

Ian’s strap line about “using every day” is written at the top of my diary.

Helen and Andy, I do hope the…[Read more]

]]> d0f32cdee0ee82d63b897de2e1756422 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton replied to the topic Curcumin case report in the forum Treatment 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 michael ashton replied to the topic Curcumin case report in the forum Treatment 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 michael ashton replied to the topic Curcumin case report in the forum Treatment 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 michael ashton replied to the topic Curcumin case report in the forum Treatment 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 michael ashton replied to the topic Side effects of Ninlaro(Ixazomib) in the forum Treatment 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 michael ashton started the topic Curcumin case report in the forum Treatment 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 michael ashton started the topic Curcumin case report in the forum Treatment 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 michael ashton replied to the topic Secondary MGUS in the forum Newcomers 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]

]]> a5d21fb422052abf6b30d9f97d508e6e DebGascoyne replied to the topic The Perfect Pair in aid of Myeloma UK - in Kidderminster, Worcestershire in the forum Off topic https://www.myeloma.org.uk/forums/topic/the-perfect-pair-in-aid-of-myeloma-uk-in-kidderminster-worcestershire/#post-133140 Sat, 22 Apr 2017 13:35:07 +0100 Sounds great Adrian….every bit we can all do is really great.
Hope the SCT goes well for you – Take it easy afterwards, listen to your body and don’t overdo it! Fundraising can all wait 🙂

Deb x

]]> 483f1deba167726d5ccd9a0c701f40e2 Debs changed their profile picture https://forum.myeloma.org.uk/activity/p/49261/ Thu, 06 Apr 2017 13:17:46 +0100 0 8d82ed0e2650c91ef28b59e14fd62eba DebGascoyne started the topic The Perfect Pair in aid of Myeloma UK - in Kidderminster, Worcestershire in the forum Off topic https://www.myeloma.org.uk/forums/topic/the-perfect-pair-in-aid-of-myeloma-uk-in-kidderminster-worcestershire/ Thu, 06 Apr 2017 13:15:48 +0100 I just wanted to let everyone know about an event that I am running in a couple of weeks – it would be fantastic if some of you might like to attend!

The Perfect Pair is a wine tasting event with a difference…and we hope that you or your friends/ business colleagues might want to get involved. The event is being run by me, Deb Gascoyne, and I’m a…[Read more]

]]> 3a98a2545a277eb9a660285bf510be6e michael ashton replied to the topic Possible MGUS? Very scarred. in the forum Smouldering myeloma / MGUS 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 michael ashton replied to the topic Daratumumbab and high risk SMM in the forum Smouldering myeloma / MGUS 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 michael ashton replied to the topic Daratumumbab and high risk SMM in the forum Smouldering myeloma / MGUS 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]

]]> 834e7e1b869eacd0258a6d8e94d4bbe6 JeanSmyth replied to the topic Gill and Stephen Nash in the forum Carers https://www.myeloma.org.uk/forums/topic/gill-and-stephen-nash/#post-131204 Thu, 08 Dec 2016 21:57:36 +0000 Donna I was shocked and saddened to read about your mum Gill. She was truly a lovely, sympathetic women who was alway supportive. I Loved to read about trips to France and the dogs. I always remember Gill replying to a post on advice for travel advice and she answered “Stephen says he’s not going to wake up in the morning with an acute case of…[Read more]

]]> 06ebfe363ee03d6acf118fb9ff9bcdfc Megan Carter replied to the topic Gill and Stephen Nash in the forum Carers https://www.myeloma.org.uk/forums/topic/gill-and-stephen-nash/#post-131154 Mon, 05 Dec 2016 22:29:26 +0000 Hi Donna,

I am very sad to read this, Gill was incredibly welcoming when I joined the forum and her stories about the dogs and the trips to France where always delightful. My condolences to you, your brother and the rest of Gill’s family and friends.

Megan

]]> 5927b23774e8ab160bd75966b02ee89c michael ashton replied to the topic Reflections of a Smoulderer of 6+years in the forum Smouldering myeloma / MGUS 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]

]]> 740723d6adc4cdb21dc1a3d2139f93e6 MavisNevill replied to the topic Myeloma bone lesions in the forum General https://www.myeloma.org.uk/forums/topic/myeloma-bone-lesions/page/2/#post-129921 Mon, 10 Oct 2016 01:32:34 +0100 Hi Cheryl

Don’t know if anyone answered your points so in case they didn’t here goes! Yes you should keep having regular infusions of Zometa. It kept me MM free for three years before I had to come off because of problems with my kidneys. Since coming off I have had much more pain and my PP has begun to rise.

As for X-rays and scan, some…[Read more]

]]> 855ca2ca31549809b142f6b779bea35d MavisNevill replied to the topic Started cycle 34 of Pom & Dex in the forum Treatment https://www.myeloma.org.uk/forums/topic/started-cycle-34-of-pom-dex/#post-129402 Sun, 11 Sep 2016 09:20:50 +0100 Hi Andy

You can tell a lot of us “old stagers” are not on here often these days in that no one has replied to you!

Great that you are still getting treatment that is allowing your new normal to continue! Do hope you get to Greece and have a great time. Just imagine, four years ago these drugs weren’t in existence. As you say “every day is a…[Read more]

]]> 37519367f403f49a6e7e2b215cde8202 MavisNevill replied to the topic Myeloma bone lesions in the forum General https://www.myeloma.org.uk/forums/topic/myeloma-bone-lesions/page/2/#post-129400 Sun, 11 Sep 2016 08:59:22 +0100 Hi Cheryl

The bit in your post I am replying to is the question about infusions. I feel rather an expert on this subject. I had about four years of four weekly Zometa infusions to prevent further bone damage. I was only taken off when I began to have kidney problems.
All I can say is, since I finished infusions my pain has steadily increased…[Read more]

]]> 4358d6c525ff63254784706bab16bd7d EveProkop replied to the topic One year on in the forum End of Life and Grief https://www.myeloma.org.uk/forums/topic/one-year-on/page/3/#post-129112 Sat, 06 Aug 2016 09:14:24 +0100 Hi!! Am back! It’s coming up to two years now since Slm died,had lots of adventures,but would have liked to do far more!!!

I decide to come back and tell you,why you should grab life by the throat and enjoy evey minute you have,I will not be replying to any answers,!!

I was diagnosed with Bladder Cancer in June of this year,although it’s very…[Read more]

]]> 6b8e3b531122e56be91850ff2fb83198 MavisNevill replied to the topic Cycle 31 but will there be many more? in the forum Treatment https://www.myeloma.org.uk/forums/topic/cycle-31-but-will-there-be-many-more/#post-128870 Thu, 21 Jul 2016 03:40:31 +0100 Hi Andy

I’m hardly on site these days but wanted to say that I hope your holidays have built you up. No reason why your protein level shouldn’t stabilise. After all this is an unpredictable disease. I do hope so.

Enjoy every day and the summer here, while it lasts!

Love

Mavis

]]> 45e62a43085043db826a016e35cd53a7 MavisNevill replied to the topic Relapsing in the forum General https://www.myeloma.org.uk/forums/topic/relapsing-2/#post-128869 Thu, 21 Jul 2016 03:31:14 +0100 Hi Maureen
Keep hopeful. Do hope news for Ian is better than you fear when you go back to hospital.
Love.
Mavis

]]> 6a2baac6c7973ca8b53a153e6c697758 BellaRS replied to the topic Hello smoulderers in the forum Smouldering myeloma / MGUS https://www.myeloma.org.uk/forums/topic/hello-smoulderers/#post-128743 Wed, 06 Jul 2016 13:40:04 +0100 Hi Heather!

I’ve been smouldering for 8 years. My pp is below 30 but my biopsy showed 15%. When my pp was at its highest (15) I was ill a lot, but the pp went down and now I don’t have any symptoms. Just the normal smoulder worries about progressing.

My consultant doesn’t like me being called a smoulderer since I’ve been stable so he keeps…[Read more]

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