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

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,…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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…[Read more]

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.

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…[Read more]

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.

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…[Read more]

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!

Although going private sounds very nice, from seeing the two in action with cancer related treatment, me with the NHS and my dad with PPP, I’d choose the NHS anyday.

I was overwhelmed with the care I received and drugs were utilised without question or delay when needed. My poor dad on the other hand had delay after delay whilst permission was…[Read more]

Hi Joe

Just thought I’d say hello and welcome.
If you’ve read my latest post in the General section you’ll know that I had my SCT 2 years ago and I don’t regret it at all.
I was only 49 at the time and apart from the MM, very healthy, so that obviously helped recovery a lot. I’ve had a wonderful 2 years and have packed an awful lot in. Lots of…[Read more]

It seem that different hospitals have different ways of doing a SCT.
I had my hickman line put in on February 8th and was let home the same day. On February 9th I went back for the Melphalan cocktail, was kept in overnight and received my stemcells back on February 10th. Again, I was allowed to go home that evening.
I didn’t go back into hospital…[Read more]

Hi David

That’s amazing news and I’m very very pleased for you.
I thought I’d been doing well with 2 years of a “bare trace” reading, but your results are terrific!

Well done. You deserve such good news.

Love
Michele

I’m sorry you’ve obviously had and are having a bad experience with the NHS, but I can assure you that that’s not always the case.

Fortunately, I was diagnozed very quickly thanks to a brilliant doctor who referred me within 24 hours to a specialist who arranged bloods, x-rays and bmb the same day and I was told I had MM 5 hours later.
My…[Read more]

All the very best Tom.

Remember, you’re not on your own…we’ll all be lurking around cheering you along!

Love
Michele x