[MicheleParticipant]

Hi Tina

I hope you enjoyed the Great Dorset Steam Fair. We went to the Dorset County Show instead this year. A great day out where normality reigned!

I had my hickman line fitted 2 days before my actual SCT and not for priming.

I was given a choice of "being put out" or just having a local anaesthetic. I chose a local so that I could get home quicker afterwards!!!

My specialist fitted it herself and although a bit of a "pushy" feeling whilst she was actually putting it in I felt no pain.
It was put just under my left collarbone.
It was a bit uncomfortable that night but I soon got used to dealing with the dangly bits.

It soon became apparent why they're fitted. They can put drugs in and take blood out so quickly and easily without the need to keep sticking needles in you.

To make sure it's been fitted correctly, you'll have an x-ray afterwards.

I had mine removed less than a month later and it's only left a very small scar.

I really hope it all goes well. Look forward to hearing all about it….

Michele x

[MicheleParticipant]

Well done Wendy.

I'm coming up to 7 months on 10th September.

It's great to feel well again isn't it?

Carry on celebrating!

Michele x

[MicheleParticipant]

Hi Lyn

Your husband Pete is entering territory that I was in last December!

The only advice that I can give is; take each procedure a step at a time. The initial priming and run up to harvesting as one, harvesting as the second and the SCT as the third. 🙂

The day Pete goes in to have the chemo. infusion will no doubt be a long, boring, tiring one. He'll receive lots of infusions through the day. I was there for about 9 hours altogether.
I took my knitting in which helped me occupy the time but was a bit awkward having pipes attached to one arm!

When I came home that evening I was exhausted and unfortunately was sick 5 times in the next 30 hours.

The GCSF injections to stimulate the new stem-cells are no problem and the bone pain he'll experience isn't very nice but is to be seen as a good sign. It means the injections are working and stem-cells will be pouring into his bloodstream. 🙂

Let us know how he gets on with the first step, and don't forget that book!!!

[MicheleParticipant]

Hi Gill

I have been receiving Zometa on the NHS since June 2011 and have been told that I'll continue having monthly infusions until it stops working.

My father was treated a few years ago as a private patient (PPP) and was told that once he started along that route he wouldn't be able to switch to the NHS.

It was a continuous battle for him as he had to constantly "get permission" for any drugs he needed to be treated with and often had to pay himself for some that PPP wouldn't fund.

[MicheleParticipant]

Hello Amanda and Bob

Welcome. I'm so glad you found the MM UK forum. It's very friendly and very useful. No subject seems to be too much trouble for the folk on here to discuss.

I look forward to chatting to you as well.

Best Wishes
Michele

[MicheleParticipant]

Nearly there then Pat.
You do seem to be having lots of tests done. No wonder you're a bit fed up!

But, look at it another way….they're being very thorough and at the end of the day if it helps them pinpoint what's wrong with you it can only be a good thing.

🙂

[MicheleParticipant]

Hello Pat

I think I was very fortunate to have my MM diagnosis made very quickly owing to my brilliant doctor. I'd had 2 bloodtests done with a 5 week interval between the 2 looking for something else. When she saw the 2nd result (and a bence jones urine test that she'd ordered too) she immediately booked me in to see my specialist and 48 hours later I was having a bone-marrow biopsy and x-rays!

I was diagnosed within a week. They seemed to know immediately what was wrong.

Treatment started the next day, so as you can imagine, my whole life was turned upside down in a very short space of time. :-S

Let us know how you get on……..

Michele x

[MicheleParticipant]

Hi Sandra

The only thing I can remember with my teeth was that when I was on CDT, they seemed to "rattle" a bit and made little clicky noises!

I didn't lose any though fortunately. My dentist is fully aware of all I've had done and knows I'm having Zometa.
Tom's right, fillings etc. are OK, it's just extractions that are risky.

I'm determined to grimly cling on to mine and clean and floss them every day! 🙂

[MicheleParticipant]

Hi Cathy

Unfortunatley the high dose of chemo. your husband was given nearly always has sickness as one of its unpleasant side-effects.

I was sick on and off for about 2 weeks. The SCT also made me feel as though a barrier had been placed between my mouth and my stomach and I totally lost my appetite for 4 days. Fortunately it came back before I'd lost too much weight, so the doctor wasn't concerned.

I sipped soda water to help settle my stomach and drank milk rather than hot drinks. Also plenty of water to keep hydrated. Hot drinks were painful to swallow because of the temporary damage the chemo. does to the throat and "pipes" down to the stomach and down at the other end.

Believe me, your husband will feel totally rubbish, but he will feel much better very soon. The experience of isolation will no doubt bring him down too and as Sandra said true recovery only begins once you're back in your own bed.

[MicheleParticipant]

Hi Megan

If Phil's PP levels have more than halved in 2 cycles I'm sure they'll continue their downward slide.
My PP levels were 45.6 at the start and they dropped to 16, 7.5, 3.5, 1.5, then just showed a trace.

As you can see, there was a massive drop after cycle 1 and after that it appears to slow down, but when you think of the drops in percentages they were still coming down fast and furious!

🙂

[MicheleParticipant]

Hello Megan

I was only 49 when I was diagnosed with MM in May 2011, but it seems that no age is too young anymore. 🙁

I'm glad you found the brilliant site and have found all the forum chat so useful.
Come on anytime to join in with good or bad news. I personally feel that to be able to share experiences and help others also helps me.

Look forward to hearing about Phil's recovery and improvement!

Take Care
Michele

[MicheleParticipant]

Hi Scott and welcome.

I just wondered what makes you think you may have MM? Have you had symptoms that have led to your doctor taking blood/urine tests to look for the signs?

I really wouldn't worry about something that may never happen and even if MM is diagnosed, please don't be scared. There's so much that can be done to treat MM even though it's not curable yet.

Let us know how things pan out……

Best Wishes
Michele

[MicheleParticipant]

Dai

I couldn't believe I was giving away the chocs. myself! I gave them to my brother though so they went to a good home.

Don't worry, the "sweet" tastebuds soon returned along with my waistline!!! 😉

Will it happen again? Who knows……..

[MicheleParticipant]

Hi Tina

I don't remember having any problem with my appetite straight after CDT but I did have days during the dex. bits when I only had small portions. After the dex days I ate anything in sight!

Also, I had major appetite loss after my stem cell harvest and during and after my STC.

My taste buds definitely changed too. I preferred savoury things and even gave away my Christmas tin of Quality Street because I went off chocolate!! :-0

You'll soon get back to normal. Meanwhile literally eat what you fancy as and when you feel like it. 😀

[MicheleParticipant]

Hello Jacquie

All of us MM'ers fully understand Geoff's (and your) shock. It's as if an express train has mowed you down isn't it?
All I can say is, once you've unscrambled all those illogical, confused thoughts and have come to terms with what MM is and the incredible amount of treatment that's available for it, you'll be much calmer and will be able to think sensibly again.

Yes, your lives will be different now. Initially there will be lots of hospital visits and drugs, but once Geoff's MM has been dealt its first big blow and he's in remission like me, you'll be amazed how "normal" things will be again.

I had an allergic reaction to allopurinol too. I had a red itchy rash, but as my kidneys hadn't been damaged at all I was taken off of them after 1 cycle.

Talk to us whenever you want to. Any question no matter how trivial can no doubt be answered by the various lovely folk on this site.

Take Care
Michele x

PS I'm in Dorset but know the Gloucester area very well. My husband's ancestors lived in and around Elmore.

[Author]

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