[suenevParticipant]

No problem Susie

[suenevParticipant]

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 shampoo.  It’s getting better but proving hard to shift!  Cetraben cream and wash and topical application of a stronger steroid cream sorted the rest.  Still use the cream and wash but not the steroid cream.

Hope you manage to get yours sorted.

[suenevParticipant]

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

 

[suenevParticipant]

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!!

[suenevParticipant]

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 CT scans to see if they can find any reason for the loss, but he suspects it is chemical damage and so will have to get better on its own or not at all.

Sue x

[suenevParticipant]

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 long to get to that stage!

Before SCT my hearing loss was about 50%.  I had met a lady at a Myeloma UK Information Day who told me she had lost her hearing temporarily after SCT, conincidentally she had the SCT at the same hospital as me.   So I was at pains to express my concerns about this to the consultant prior to SCT and he said it shouldn’t affect my hearing.

I was therefore dismayed that approximately 16 days post transplant my hearing disappeared completely in my left ear, followed by that in my right ear two days later.  They gave me a steroid nasal spray which marginally improved things but then it disappeared completely again.  No-one seemed to understand why this had happened and eventually I got an emergency referral to ENT at the end of February.  Again they couldn’t understand what had happened but gave me some more steroid nasal spray and put me on a course of antibiotics.    At this stage no-one knew whether the hearing loss would be permanent or not.  At that stage it was a 90-95% loss and they fitted me with some very powerful hearing aids.

By the end of March my hearing had improved and I could cope very well with the new hearing aids.  As it got better they became too powerful.  I went back to ENT about two weeks ago and they said that my hearing was almost back to pre SCT levels, just slightly down in the left ear.  I am not surprised by this as I have had a number of ear and chest infections post SCT and it is always my left ear that is affected.

Another thing I learned is that while in hospital I had an infection and they gave me an antibiotic called gentamicin, which is apparently very good for people who are neutropaenic.   Unfortunately it is also ototoxic – which means it can damage the cochlea and the auditory nerve permanently.   This might be something worth discussing with your consultant.

Hope this helps

Best wishes

Sue

[suenevParticipant]

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 won’t know whether I am back to pre-transplant levels and I suspect if it’s still down a bit they still won’t be able to tell me if it’s permanent or temporary or what caused it.

It would be good if someone could keep an official record of how often hearing loss and tinnitus occurs as a result of treatment in order that the frequency of these problems can be monitored and more learned about it.  However, I suspect that it is not a common enough problem for it to be worth devoting resources to it.

I also contacted Action on Hearing Loss to see if they could help.  They knew very little about hearing loss as a result of SCT but did say that various forms of chemotherapy can lead to permanent damage to the cochlear and the auditory nerve.

[suenevParticipant]

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 Myeloma UK Patient Information Day I met a lady who had had a transplant in the same hospital I had mine and she lost her hearing.   It was restored through inserting grommets but she said it was very upsetting at the time.

I wonder what the incidence of hearing loss through SCT is nationally – and internationally for that matter.  I can’t find a lot of information out there.

[suenevParticipant]

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 Gentamicin when I developed an infection and that particular drug is known to cause irreversible auditory damage!  Am now on watch and wait with the ENT consultant to see if things improve.

[suenevParticipant]

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 for starters and then take it from there.

Best wishes

Sue

[suenevParticipant]

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 mother in Costa Rica!

[suenevParticipant]

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 as it is thought to prevent it working properly.

You should tell your consultant about any supplements you are taking.

Should also add that I given up alcohol – apart from a couple of glasses of bubbly at my son’s wedding and at a friend’s 60th birthday celebrations!

Sorry have just noticed you are post SCT.  I haven’t had mine yet!

Best of luck

Sue

• This reply was modified 7 years, 11 months ago by  suenev.

[suenevParticipant]

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 blood again!

Treatment for MM was delayed until a gynae problem picked up on the MRI from my staging could be treated.  Had to really battle with my local hospital – and the Christmas floods- to get that one done!  Finally started my treatment at the end of January on the Myeloma XI trial.

Dramatic fall in paraproteins in cycle one coupled with a horrendous reaction to the antibiotic I was taking was followed by a week’s rest and then two cycles where I seemed to plateau.  But now the levels are coming down again but I am only likely to have a partial response by the end of cycle 6.  So randomisation onto the stem cell transplant or more treatment with Velcade will follow.

Another MRI a couple of weeks ago showed more damage to my spine than they had initially led me to believe but the conclusion was no change from the previous scan.  So looks like nothing has got worse but the deposits in my spine are not responding to treatment!

So yes, it is a long roller coaster of a journey!

I have been getting support from my local CancerCare and am just coming to the end of a course of 1:1 Alexander technique sessions which have really helped.  Next I am going to have counselling to help me cope with the mental aspects of this battle.  Is there anything like this in your area you can tap into Chrissie?

It’s amazing what strong, brave women and men can cope with when they have to.  We have my daughter, her partner and 3 year old granddaughter living with us (since July 2014).  I survived the granddaughter’s chickenpox in cycle 1 and my daughter’s chronic morning sickness this cycle.  My husband is a great help but I’ve also indulged myself and got a cleaner for two hours a week!

Hopefully the daughter’s house will be ready for them to move into in the next couple of weeks and then I can get my own house in order before my stem cell transplant and do less running around after other people!

Keeping a sense of humour helps and having lunch out with friends!  Focus on the things you can do rather than those you can’t!!

Good luck!!!

 

 

 

[suenevParticipant]

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 try at least one more cycle to see if the same thing happens.

 

Sue

[suenevParticipant]

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 stay positive and beat this!!

 

Best wishes to your family

 

Sue

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