[MicheleParticipant]

Hi Chris

I had my SCT in February 2012 and opted to go drug-free afterwards. I personally couldn’t see the point of going through 6 cycles of CTD and having a SCT, only to immediately go on more drugs afterwards that would not let me be side-effect free for my unknown length of remission.
I’ve almost reached my 2 year point now and have never regretted my decision. I’ve had a brilliant drug-free remission and have felt very well indeed.
I also feel that my body has had a chance to recover and will respond well to my next treatment when I relapse.

However, that’s just my point of view and obviously there are folk on here who have been on maintenance drugs and will be able to tell you how they’ve coped.

All the very best whatever you decide.
Michele

[MicheleParticipant]

Hi Carol
Well my hair definitely started to thin when I was taking the CTD drugs and came out very quickly once I’d been prepared for stem-cell harvest.
Like yours, my scalp was very sore.
When I had the final “toxic” dose of chemo in SCT week, that sealed my hairs fate and it literally fell out completely one night.
My pillow looked as though a guinea pig had exploded on my pillow!

You’ve got to face the fact that you will be bald for a while, but at this time of the year you can hide it with hats and pretty scarfs.
My husband was really kind and said I reminded him of a lovely Star Trek alien!

I thought having no hair would be devastating, but I was wrong. It started growing back after about 7 weeks and I enjoyed the break from washing and styling it. Once it started to grow it came through at an amazing speed and a slightly different colour to before.

Hope this helps.
Michele x

• This reply was modified 10 years, 11 months ago by  Michele.

[MicheleParticipant]

Hi Tom
Well this is a post I didn’t expect to see for a long time. It must be so disappointing, especially when you’ve had such a long drug free remission.
You must be at an advantage though as your body has had a good long break from drugs, so it should respond well to the next attack.

As you say, “just get on with it”. That’s the attitude I hope I’ll have when I get to my first relapse.

Very best wishes Tom.
Michele x

[MicheleParticipant]

It looks OK to me and if it helps keep the scummy spammers at bay, that’s a good thing.

The only thing I don’t like is being labelled a “participant”. Makes it sound as though I’m taking part in “It’s a Knockout” or some other sporty thing!!

[MicheleParticipant]

The most gruelling day for me was when I had chemo and many other infusions from 8.00am to 5.30pm in preparation for the stem cell harvest.
I was totally shattered and was unfortunately sick for about 30 hours afterwards.
The GCSF injections were no problem to self inject but the bone pain I was warned about a few days in was quite bad. However I knew that pain meant that the stem cells were being released into my bloodstream, so I put up with it happily.

Harvesting itself was not painful, just a bit tiring.

Could I have worked through that time? Probably not.
It'll be a tiring few days and you'll need to rest.

However, as we all know, everybody reacts in different ways, so at the end of the day, the decision will be yours as you're the only one who knows how you feel.
🙂

[MicheleParticipant]

I'm very sad and shocked to hear this news as I didn't even know that Dai had taken a turn for the worst.
My sympathy to all the family.

[MicheleParticipant]

I was 49 when I was told I had myeloma and I couldn't believe it either. Apart from the mm, being otherwise healthy, young and fit is a good starting point to be in to cope with the treatment that lies ahead of you now.

If like mine, yours was caught early, hopefully not too much damage has been done to your bones or kidneys.
That will help your body work with the drugs you'll be given to knock the mm back.

I can assure you, an mm diagnosis isn't the end of life as you've known it. Although not yet curable, it's very treatable with plenty of drugs in stock to keep you going for many years.

I had 6 months of drugs followed by a stem cell transplant back in February 2012.
I now have a totally normal, happy life and do more than I ever did before mm.

You must be positive because you can be!

Where are you being treated?

This forum is a great place to ask for help or advice. It has a mix of those caring for people with mm and people who actually have mm, so plenty of knowledge and experience to share.

Michele 🙂

[MicheleParticipant]

Hi Scott
When I had my first flu jab 2 years ago I was still on CTD treatment and felt very unwell for about a week afterwards.
However, the one I had last year and the one I had last month were absolutely fine with only a sore arm for a couple of days.

Definitely worth having one though. My husband has them too just to be on the safe side.

Michele

[MicheleParticipant]

Hi Ann

Nothing expensive for me.
I have a digital thermometer bought for £4.99 and it's very reliable and accurate.

Michele 🙂

[MicheleParticipant]

Hi Carol

I read that article too. It just confirms what I've always thought. The immune system is the most important tool in our armory.
Like you, before MM I hardly ever took a pill and it's paying dividends now because my body has responded incredibly well to all treatment drugs.
🙂

[MicheleParticipant]

Hi Lolly

Did you get given a reason for a refusal?

I know MM folk are entitled to a blue badge but to be quite honest I've never applied for one as I don't feel I need it yet.

Maybe Steve is so mobile and healthy looking at the moment that the doctor thinks him still able rather than disabled?

🙂

[MicheleParticipant]

Hi Tom

The answer to your question in one word is "yes". 🙂

I do get the odd bit of bone or muscle pain now and again, but it's transient and I just accept it as part of the MM experience. 😐

[MicheleParticipant]

Now that you mention it I do remember having ear problems a few months after my SCT.
It wasn't all the time, but some days it seemed as though I was in an aeroplane and I could hear throbbing engine noises in my head.

I went to see my doctor and she told me my ear canals were inflamed and blocked.
I inhaled steam with eucalyptus and menthol added to the hot water to help unblock the canals.
It drove me a bit mad at the time, but it did go away.

[MicheleParticipant]

Hi Susan

Yes, I did have a SCT and to be quite honest, although grim, I found the 6 months of CTD treatment beforehand far worse.

After the 6 months, my PP's had dropped to below 1 and so it was a difficult decision deciding whether a SCT was necessary at that point.
However, I did go ahead as I decided the myeloma was "on the back foot" and I may aswell attack it fully.

For me it worked and I've been in a drug-free remission for 20 months now.
I may have been in the same position without the SCT, but I'll never know the answer to that.

I'll be trawling the shelves for hair colouring now thanks to your topic. Just the push I needed, so thanks for that!

Michele x

[MicheleParticipant]

I'm glad this subject's come up!

I had my SCT in February 2012 and when my hair grew back it was white and grey.

My hairdresser advised me not to have it coloured when I was still taking drugs and had chemo. residue in my system, so I've put up with looking like my husband's mother for over a year. 🙁
My hair now grows really fast so I've also been reluctant about colouring it so that I don't have one of those awful stripes unless I retouch up the roots regularly.

However, I've got to the point when at 51, I want to look 51 again and not 71!!

I'm now ready to go a light golden blonde and had been wondering which semi-perm. would be the best to use. My hairdresser now says I should have no problems so am looking forward to rejuvinating myself. 😀
I'll go and take a look at the Olio.

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