Myeloma Forum | suenev | Activity https://forum.myeloma.org.uk/members/suenev/activity/ Activity feed for suenev. Fri, 24 Apr 2026 05:52:17 +0100 https://buddypress.org/?v=2.9.4 en-GB 30 hourly 2 522a992027b4a2125f2fa2c4ab299269 suenev replied to the topic Skin problems post SCT in the forum Side-effects https://www.myeloma.org.uk/forums/topic/skin-problems-post-sct/#post-137723 Wed, 25 Apr 2018 13:39:32 +0100 No problem Susie

]]> 21d339825a448515d06326bcf7b8928f suenev replied to the topic Skin problems post SCT in the forum Side-effects https://www.myeloma.org.uk/forums/topic/skin-problems-post-sct/#post-137707 Mon, 23 Apr 2018 12:56:44 +0100 Hi Susie

I finally saw the dermatologist in December.  My rash turns out to be eczema, possibly resulting from the way my immune system put itself back together after my SCT.

I have managed to get rid of the rash everywhere apart from the back of my head where it first started.  Currently treating that with a steroid mousse and a treatment s…[Read more]

]]> 38eac8eb73a943a239ddb0ad15360704 suenev replied to the topic Skin problems post SCT in the forum Side-effects https://www.myeloma.org.uk/forums/topic/skin-problems-post-sct/#post-136168 Mon, 27 Nov 2017 17:05:32 +0000 Thanks Debbie

I am hoping that the dermatologist is able to help me.  Not long now until the appointment.  I am seeing my haematology consultant tomorrow and will update him.

Best wishes

Sue Nevinson

 

]]> 8c91e6ab6c698740e3b7c173c6794c79 suenev replied to the topic No sense of smell in the forum Side-effects https://www.myeloma.org.uk/forums/topic/no-sense-of-smell/#post-136036 Tue, 21 Nov 2017 17:45:56 +0000 Unfortunately it does, as 80% of your taste is in your sense of smell.  The tongue can only differentiate between salt, sour, sweet and bitter.  The olfactory nerve and the nose do the rest!

I now can’t appreciate a good glass of wine and it is not worth buying me an expensive gin!!

]]> 52b7ec3b9a3dff57e8572e526f36e1a3 suenev replied to the topic No sense of smell in the forum Side-effects https://www.myeloma.org.uk/forums/topic/no-sense-of-smell/#post-136034 Tue, 21 Nov 2017 16:27:23 +0000 Thanks for this!  Glad to know I am not the only one who is affected.  I first realised my sense of smell had gone completely when I went to smell some new perfume and thought it was water!  Such a shame as I have a number of new bottles in stock.  My daughter and daughter-in-law might reap the benefit.

My ENT consultant is sending me for MRI and…[Read more]

]]> 222210df1dfab73a8ccfe7ee063dd7f9 suenev started the topic No sense of smell in the forum Side-effects https://www.myeloma.org.uk/forums/topic/no-sense-of-smell/ Fri, 17 Nov 2017 10:51:41 +0000 Has anyone lost their sense of smell after a stem cell transplant?  Had my SCT in January 2017 and only realised my sense of smell had gone in August.  But looking back it may have been late February / early March.  Have been told that if it doesn’t come back after a year it is probably a permanent loss.

 

]]> fffe63394a488b4bc6bf8952050f3adb suenev started the topic Skin problems post SCT in the forum Side-effects https://www.myeloma.org.uk/forums/topic/skin-problems-post-sct/ Thu, 16 Nov 2017 10:24:14 +0000 <p style=”text-align: left;”>Has anyone experienced skin problems post SCT?  I had mine in January this year and developed a rash on the back of my head a couple of months later.  After that I had very dry skin and rashes on my back and abdomen and now on my arm where I had blood taken four weeks ago and occasionally on my legs.  The rash(es) ha…[Read more]

]]> 8b4f7c0030b94fa3786cb03f22688c05 suenev replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-134093 Sat, 01 Jul 2017 14:40:34 +0100 Hi Lynne

I have a hereditary hearing loss and have worn two hearing aids for a number of years.  I was diagnosed with multiple myeloma in October 2015 and following induction treatment with Revlamid, Cyclophosphamide and Dexamethasone as part of the Myeloma XI clinical trial had a SCT in January 2017.  It’s a long story as to why it took me so l…[Read more]

]]> cfa0f6f9abd4f6a054e606144efe0b29 suenev replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-132443 Tue, 21 Mar 2017 14:37:21 +0000 I think Myeloma UK monitor the forum and comment on some of the posts.  I did however contact the nurse at Myeloma UK about this and she sent me a very comprehensive response, detailing all the possible things that could cause hearing loss during treatment.

My hearing continues to improve but until I go back to ENT in couple of weeks time I…[Read more]

]]> a5ca634d3983ddbfccbfe6a6a376d14f suenev replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-132067 Wed, 01 Mar 2017 20:36:26 +0000 Thanks for getting back to me.  My hearing has continued to deteriorate since I last posted.  It might be an infection so the ENT consultant has prescribed some antibiotics and I have to go back again next week.   Feeling very cut off from the world!

The haematologist said the transplant shouldn’t have caused hearing loss, but at a recent Mye…[Read more]

]]> fe01fdfe2cd4bd5c5aebe3aedd92fc78 suenev replied to the topic hearing loss in the forum Side-effects https://www.myeloma.org.uk/forums/topic/hearing-loss/#post-132014 Sun, 26 Feb 2017 13:08:28 +0000 It is gratifying to know your hearing came back.  I am now 6 weeks post transplant and have gone from a 50% hearing loss pre transplant to an 80% loss at the moment.  Without hearing aids I can hear nothing.  My consultant says the transplant shouldn’t have caused this but I do know they gave me a couple of doses of an antibiotic called Ge…[Read more]

]]> ba52a73bf7c9a6411a025cb5bb027f08 suenev replied to the topic Reiki in the forum General https://www.myeloma.org.uk/forums/topic/reiki/#post-131198 Wed, 07 Dec 2016 11:31:48 +0000 Hi Rebecca

Sorry with all that has been going on in the past few weeks I have just noticed that I have not replied to your message.

Many thanks for this information.  I will look into it.

I have since discovered that a friend of mine has been doing some reiki training and has got to level 2, so she is going to practice on me.  Will try this f…[Read more]

]]> 2f2da6eb62d6e83f39d7adfe6e0510f9 suenev replied to the topic NHS Drug Funding in the forum Treatment https://www.myeloma.org.uk/forums/topic/nhs-drug-funding/#post-129793 Thu, 29 Sep 2016 08:07:46 +0100 You are quite right. I have worked in the public sector in communications, education and local government. If you write to your MP it becomes a ‘flag’ case and everything else has to be dropped while it is prioritised. A friend of mine had success down this route when her son’s head teacher refused a term time holiday to see her very sick…[Read more]

]]> da98e82117f8c605d6f38982450868a2 suenev started the topic Reiki in the forum General https://www.myeloma.org.uk/forums/topic/reiki/ Tue, 27 Sep 2016 16:35:34 +0100 Does anyone know of a good Reiki practitioner in Lancashire or south Cumbria?

]]> e4c48798d86d4af6d063ae4ef96760ea suenev replied to the topic Vitamins etc in the forum Treatment https://www.myeloma.org.uk/forums/topic/vitamins-etc/#post-128347 Mon, 06 Jun 2016 07:37:26 +0100 Hi Val

I take a teaspoon of Manuka honey each morning hoping it will help boost my immune system.  Am also thinking of starting taking turmeric tablets as I found an American study which showed it had the potential to stop myeloma becoming resistant to drugs.  The only thing I have come across which is a no-no is green tea if you are on Velcade a…[Read more]

]]> 574abc53ff965d1fc190481552e16d1c suenev replied to the topic Vitamins etc in the forum Treatment https://www.myeloma.org.uk/forums/topic/vitamins-etc/#post-128347 Mon, 06 Jun 2016 07:37:26 +0100 Hi Val

I take a teaspoon of Manuka honey each morning hoping it will help boost my immune system.  Am also thinking of starting taking turmeric tablets as I found an American study which showed it had the potential to stop myeloma becoming resistant to drugs.  The only thing I have come across which is a no-no is green tea if you are on Velcade a…[Read more]

]]> 53079127f553710163e169adeca68dba suenev replied to the topic multiple myeloma taking long time time for treatment. in the forum Newcomers https://www.myeloma.org.uk/forums/topic/multiple-myeloma-taking-long-time-time-for-treatment/#post-128346 Mon, 06 Jun 2016 07:18:44 +0100 Totally agree with the comments above.  My myeloma was picked up in October 2015 through the blood test that was part of a routine NHS health check.  Apparently my GP had flagged up abnormally high protein levels in a 2009 blood test.  Despite me having repeat,sudden and difficult to clear infections in the interim he had never thought to test my…[Read more]

]]> e41b1fe5302de188a9a717a132f93883 suenev replied to the topic Myeloma XI - CRD treatment in the forum Side-effects http://www.myeloma.org.uk/forums/topic/myeloma-xi-crd-treatment/#post-126999 Thu, 25 Feb 2016 19:26:15 +0000 Thanks Susie

 

That has definitely given me hope.  I was so pleased when I got the version of the trial I had hoped for as I had done a lot of research and decided it was my preferred option.  My consultant says he has never come across this reaction before and is talking about swapping me to Velcade off the trial.  I am hoping he might let me…[Read more]

]]> a34d4563f2790401048c7b20c3503efd suenev started the topic Myeloma XI - CRD treatment in the forum Side-effects http://www.myeloma.org.uk/forums/topic/myeloma-xi-crd-treatment/ Thu, 25 Feb 2016 08:55:04 +0000 Have just completed first cycle of treatment with cyclophosphamide, dexamethasone and Revlamid.  Had a very good response with IGg levels down from 46 to 18 but experienced a lot of side effects.  These included alternating diarrhoea and constipation, breathlessness and two different kinds of rash which coincided with the two bouts of diarrhoea.  …[Read more]

]]> bcaabcbda68ab78ce0d5fa0889b3158e suenev replied to the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/#post-126781 Sun, 31 Jan 2016 08:55:36 +0000 Thanks for this Rob!  So glad your Mum is doing well!!

 

Day 5 of treatment today and apart from only getting about 4 hours sleep a night am doing well.  Hope this bit will improve this week when I am off the Dex!

Only other downside is having to inject every day to ward off the threat of thrombosis from the Revlamid!

But I am determined to s…[Read more]

]]> 60b450f4473c9a20452b796a652f89dd suenev replied to the topic Coping with dexamethasone in the forum Newcomers http://www.myeloma.org.uk/forums/topic/coping-with-dexamethasone/#post-125956 Sat, 23 Jan 2016 18:03:20 +0000 Thanks everyone for the advice and shared experiences.  Sorry for the delay in replying but I have been away to see family before I start popping the pills!

Keeping a diary seems like a good idea and also going with the flow.  Guess once I get into the routine of it all it will make sense!

3 days to D(drugs)-Day!

Bring it on!!

 

Sue

]]> ec2c6b82170e57218851f4506d0626d5 suenev replied to the topic Coping with dexamethasone in the forum Newcomers http://www.myeloma.org.uk/forums/topic/coping-with-dexamethasone/#post-125930 Wed, 20 Jan 2016 21:46:12 +0000 Thanks ladies!  Guess I will just have to suck it and see!!

Some of the advice I have read says to take it early in the morning – which makes sense.

At least I might catch up on the chores on the wide awake days and with my son’s wedding coming up in April I have a good excuse to go shopping!  No outfit yet as I didn’t know what s…[Read more]

]]> 352e1b3a492d1ed43b40932608636587 suenev started the topic Coping with dexamethasone in the forum Newcomers http://www.myeloma.org.uk/forums/topic/coping-with-dexamethasone/ Wed, 20 Jan 2016 09:49:34 +0000 Have recently been randomised to CRD as part of the Myeloma XI trial and due to pick up meds next Tuesday.

The hospital have told me that the hardest part will be coping with the rollercoaster side effects of dexamethasone.  Does anyone have any useful tips that might help with this?

]]> 4b6e72041f2228ee2dfe62b7beb8bc60 suenev changed their profile picture https://forum.myeloma.org.uk/activity/p/42597/ Thu, 14 Jan 2016 12:28:23 +0000 0 a17df4d127b3166f8fe400e20026bb29 suenev replied to the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/#post-125744 Thu, 14 Jan 2016 12:18:20 +0000 Brilliant news yesterday!  Decided to go for the Myeloma XI trial and was randomised to CRD!!

So all the worry about needles was unnecessary and I get the new immunotherapy I wanted.  Someone up there must love me!

Also paid a visit to CancerCare and signed up for some one-to-one on Alexander Technique.  I have had a hip replacement as well as…[Read more]

]]> 23c67d5bee796eca8b661e3da287dbab suenev replied to the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/#post-125672 Sun, 10 Jan 2016 10:01:00 +0000 Thanks Tony

I was coming to the conclusion that I would do the trial as I want to give myself the best chance of a good response and remission.  Would really like to find someone who could reassure me from their own experience that the needles are doable!

I’ll let you know how I get on.

Best wishes

Sue

]]> 7204714ef5ddb1d1ca6fad4a50599385 suenev replied to the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/#post-125667 Sat, 09 Jan 2016 13:29:17 +0000 Hi Rob

Which drug combination did your Mum have?  If it was a tablet only trial, as it was originally, it would have been a no-brainer!  I would really like CRD but if I’m randomised to CTD I am no worse off than I would be on standard treatment.  However, on the new version of the trial you have a 50% chance of getting CCRD and the fourth dr…[Read more]

]]> d0a1343a34a7eb07ce1de50f4120d937 suenev replied to the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/#post-125658 Fri, 08 Jan 2016 19:49:03 +0000 Thanks Tony!  There has been a new ‘arm’ added to the Myeloma XI trial which now means you have a 2 in 4 chances of getting a new programme of treatment -CCRD- whereas the original trial only offered CTD or CRD.  The second C in CCRD is carfilzomib which is delivered intravenously on days 1 and 2 of the first cycle and days 1,2,8,9,15 and 16 on s…[Read more]

]]> 2a350c5dc365b6f7736f253d73429f8f suenev started the topic Carfilzomib administration in the forum Treatment http://www.myeloma.org.uk/forums/topic/carfilzomib-administration/ Thu, 07 Jan 2016 16:15:13 +0000 I am newly diagnosed with multiple myeloma and am considering signing up for the Myeloma XI clinical trial.  I am particularly concerned about how I would cope with the administration of this drug if I am selected to have it.  It seems an awful lot of needles and yet I have been told that  my consultant is reluctant to fit a central or Hickman li…[Read more]

]]> fb10b48004f902b3625ceb0174844aa1 suenev became a registered member https://forum.myeloma.org.uk/activity/p/42481/ Thu, 07 Jan 2016 15:57:32 +0000 0