suenev

  • No problem Susie

  • 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]

  • 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

     

  • suenev replied to the topic No sense of smell in the forum Side-effects 6 years, 4 months ago

    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!!

  • suenev replied to the topic No sense of smell in the forum Side-effects 6 years, 4 months ago

    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]

  • 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.

     

  • <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]

  • suenev replied to the topic hearing loss in the forum Side-effects 6 years, 9 months ago

    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]

  • suenev replied to the topic hearing loss in the forum Side-effects 7 years ago

    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]

  • suenev replied to the topic hearing loss in the forum Side-effects 7 years ago

    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]

  • suenev replied to the topic hearing loss in the forum Side-effects 7 years, 1 month ago

    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]

  • suenev replied to the topic Reiki in the forum General 7 years, 3 months ago

    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]

  • suenev replied to the topic NHS Drug Funding in the forum Treatment 7 years, 6 months ago

    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]

  • suenev started the topic Reiki in the forum General 7 years, 6 months ago

    Does anyone know of a good Reiki practitioner in Lancashire or south Cumbria?

  • suenev replied to the topic Vitamins etc in the forum Treatment 7 years, 9 months ago

    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]

  • suenev replied to the topic Vitamins etc in the forum Treatment 7 years, 9 months ago

    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]

  • 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]

  • 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]

  • 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]

  • 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]

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