If you want more good news, I passed the 5 year marker-post since diagnosis in May and after the first horrendous year of CTD and SCT, my life has never been better. Full remission and drug free with an appointment with my specialist every 6…[Read more]

My family and friends are very good and always stay away if they suspect they have any germs.

There’s always a chance of catching something when you’re out and about but to knowingly…[Read more]

The premiums are bound to be high but before you make any decisions I suspect that it’ll be an either/or situation as far as receiving NHS or Private treatment is concerned. I don’t think you can mix the two.

The quality of remission seems to vary depending on whether you opt or are put on maintenance treatment or go totally drug-free.

I’m in the drug-free camp and live a very happy, active life with only a 6 monthly visit to see my lovely specialist.
Even after all these years, only my family and close friends know I’ve got MM. I…[Read more]

I was diagnosed in May 2011 when I was 49. It was totally out of the blue and I can still remember the first days afterwards spent in shock, despair and yes, fear. My brain seemed to scramble and I couldn’t think logically at all. I just kept thinking “I’m going to die”.

If you can relate to this, please let me assure you that with…[Read more]

I was diagnosed with MM back in May 2011 and after 6 cycles of CTD had a SCT in Poole Hospital in February 2012. After a few months I was completely back to normal and have been in a very good partial remission and then a complete remission ever since. I haven’t looked back and live life to the full. I’ve been totally drug-free for over…[Read more]

Just a quick note to let you know that my October blood tests show that my myeloma is still undetectable and in complete remission.

As you can imagine, I’m very pleased about that.

I hope you’re progressing well too.

Best wishes
Michele

I’ve decided that worrying about the current decisions won’t achieve anything and am going to wait to see what actually happens.

If they want to save money, there are masses of other avenues they could explore first before deleting cancer drugs.

The news that rev. and pom. have just disappeared has really unsettled me.

It seems that the bods who airily make these decisions have no idea how it affects folk with the cancers.

I’m very much…[Read more]

The news that rev. and pom. have just disappeared has really unsettled me.

It seems that the bods who airily make these decisions have no idea how it affects folk with the cancers.

I’me very much…[Read more]

However, drinking plenty of water wasn’t an option to me and I can’t stress enough how important those 3 litres are to help flush through drug…[Read more]

I’m so pleased my post has helped and encouraged you. That’s just what I hoped it would do for folk on this forum.

In answer to your question, I’m still absolutely fine. I saw my specialist again in April and nothing had changed. Next appointment at the end of October. I’ve spent the year having some great holidays and generally living…[Read more]

As far as your MM diagnosis goes, once you’ve got over the initial shock, you’ll start thinking straight again and realize that it’s by no means the end…[Read more]

With you neuts. still settling down after your SCT and being on the low side, the main advice I’d pass on is to keep your living areas scrupulously clean and avoid ANYBODY with any sort of germs. You’re very open to infections at this stage and have to be very careful indeed.
If you can really work on building your immune system up now,…[Read more]

It did have side effects but the…[Read more]

Once the chemo’s out of the system,…[Read more]

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]

Imagine my surprise today when I was told by my specialist that my latest PP readings have come back “undetectable”…[Read more]

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]

The problem with Septrin for me was that within 4 days of starting to…[Read more]

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]

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.

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]

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.

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!

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]

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]

I know there are a lot of folk using the forum at the moment who are either preparing for, or have just had their SCT, so I just wanted to offer a bit of encouragement to you all.
Apart from the odd bit of bone pain and a few nights when I find getting to sleep…[Read more]

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

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]

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

Love
Michele x

I still don’t like being a “Participant”!!!!

I’d be thinking of all the probable days off ahead for treatment and how that would affect my colleagues, as…[Read more]

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…[Read more]