[MicheleParticipant]

Hi Andrea. I had my SCT 3 years ago and am trying to think back for things that may help you. I found my laptop a lifesaver and had free access to the hospital internet being as I was in isolation. Also had free TV. I took my knitting in but soon found that concentration levels are too low to do anything like that. I had a book, but suggest you have some bitesize reading like magazines and newspapers.
Take some nice body lotion, handcream and a big pack of babywipes (you’ll definitely need them!)
I also had some lemon barley water and soda water to drink. Your appetite will be all over the place, so eat as and when you feel like it, but drink plenty. I found milk good for when my throat was uncomfortable. I couldn’t drink anything hot or acidy. It was too painful for a few days.

I won’t pretend the experience is pleasant. It’s not, but I can assure you that if you leave you dignity at the hospital entrance, let the staff and the drugs do their work, it’s something you can tough out and come out the other end knowing that time will soon get you back on your feet and living normally again. The isolation is probably the worst bit and I found the experience affected me a lot emotionally.

I’ve been drug-free for over 2 years now and am still in complete remission. I wouldn’t know I’d got MM and live life to the full.

The very best of luck to you Andrea. Let us know how it goes.

[MicheleParticipant]

Hi Simon
I had thalidomide as part of my initial treatment over 3 years ago. I had 6 cycles of it and I responded really well. You’ll probably have to take an aspirin every day or something else to prevent clots, but it certainly worked for me and I’m in a complete, drug-free remission 3 years after my SCT.

It did have side effects but the benefits were worth it.

[MicheleParticipant]

Troll.

[MicheleParticipant]

Be aware that I’ve just ages filling this in only to find that it froze on me and I had to abort the survey. Very annoying.

[MicheleParticipant]

I drank soda water which really helped settle a feeling of nausea and Robinson’s Lemon Barley Water.

[MicheleParticipant]

When I was on CTD, my specialist told me that my skin would be extra sensitive to sunlight and that I should protect myself.
I don’t think applying fake tan would be a good idea either owing to the chemicals in it. I say this because I was also told not to colour my hair because of the chemicals in the dye.

Once the chemo’s out of the system, it’s a different matter.

[MicheleParticipant]

Hi Finn

When I was diagnosed my PP levels were about 45. CTD brought them down to just a “trace” after the 6 cycles.
After my SCT in February 2012 they still read “trace” and hadn’t shifted from that until now.

That’s why I was so surprised that they suddenly disappeared altogether. Surprised but delighted as you can imagine!

All my careful diet and general maintenance seems to be paying off so I’ll carry on the same regime!!

[MicheleParticipant]

Hi Nick

I imagine that you could talk to your mum about the up to date treatments for Myeloma ’til the cows come home, but the big hurdle you face here isn’t her physical state, it’s her mental/emotional state of mind.

My dad died 5 years ago and sadly, it’s been as if my mum went too. She’s never got over it as they were married for 56 years and were a devoted couple.
My mum has colitis but despite my telling her of all the modern drugs that could help her, it’s as if she’s deaf and spends her days wishing she could join dad.

At the end of the day, all you can do is let her make her own choices.

It seems so ironic to me that mum wants to die and I (the one with MM) wants to go on living life to the full.

My best wishes to you. I really do know what you’re up against.

[MicheleParticipant]

Gosh Carol, I can’t believe how unconcerned your GP seems to be.
Fortunately mine is wonderful and if it wasn’t for her recognizing MM so quickly, I wouldn’t be at the point I am. She never minds me making an appointment to see her if I have any minor worries MM related or not.

The problem with Septrin for me was that within 4 days of starting to take it my specialist noticed that my liver took a turn for the worse and stopped it immediately. (Another fairly common symptom apparently).

I really think you need to get your cough sorted and see another doctor if necessary.

[MicheleParticipant]

Hi Carol,

Before I had my SCT it was explained to me that the Melphalan I’d been given was known to amongst other things, strip the lining from the inside of the lungs and that I would be put onto a drug to ensure I’d be protected from pneumonia etc.
It turned out that I was allergic to Septrin, so for a year after SCT I had a monthly nebuliser session to coat my lungs linings. It wasn’t very pleasant but obviously did the job.

When I asked why this was done, my specialist told me that before they realized the full extent of damage Melphalan did, a lot of people were catching lung infections and dying.

• This reply was modified 10 years, 2 months ago by  Michele.

[MicheleParticipant]

Hello Den

When I was put on CTD I initially started on a 100mg dose and had it put up to 200mg after 2 cycles. I didn’t feel any different. It was just more pills to take!

I could have gone up to 400mg if needed but fortunately I responded very well on the lower doses.

I hope your husband continues to respond well.

[MicheleParticipant]

Hi Frances

My hairdresser didn’t want to dye my hair until all the chemo and drugs were out of my system.
I tolerated being grey for over a year but felt so ancient that I took the plunge and had a semi-permanent colour put on earlier this year.

I now have a root touch-up every 3 months or so and can honestly say it did me the world of good both emotionally and with my appearance. Feel and look 10 years younger!

[MicheleParticipant]

Hi Terry

There have been some nasty bugs doing the rounds again this year and what you describe is what my husband’s had. He has a stupid cough, and a nose that is constantly manufacturing snotty rubbish.

As I’m the one with MM, I’m hoping it’s not catching!

I hope you get shot of it soon.

[MicheleParticipant]

Richard, Thankyou so much for this encouraging post.
I was 49 when I was diagnosed with MM in May 2011 and had CTD and a STC in February 2012.
I haven’t looked back since and have been drug-free for about 18 months.
Fortunately I was fit and healthy at point of diagnosis and have been positive and upbeat since day one. It definitely helps.
I take care with my diet and walk as much as I can to keep active. Basically, my life is very good at the moment and hopefully I’ll have a long remission like yourself.

I often try to post jolly, positive news on this site, but I don’t think most folk believe how well I feel and I tend not to get much of a response!
It’s so important for the newbies on here to realize that MM isn’t all doom and gloom and that it’s a very very treatable disease. Look and think ahead many years and don’t feel that your life has gone down the plughole.
Here’s to the next decade!!!

[MicheleParticipant]

Hi Graham.

Well, that sounds totally unacceptable to me. When I see my specialist every 4 months, she knows I’m interested in and understand the bloodtest results and always calls them up on her screen for me to see and discuss.

£10 for each SAR sounds like a bit of a scam to me. I’d certainly kick up a bit if I were you!

• This reply was modified 10 years, 8 months ago by  Michele.

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