[MicheleParticipant]

Hi Jean
Sorry to hear that Frank's P & P levels have dropped. I don't know about phosphate but I know the potassium levels can be quickly boosted by bananas.

Try to have a Merry Christmas.
Michele xx

[MicheleParticipant]

Hi Keith,
Have you had any problems with your spleen? It's just that when my dad's platelets dropped down to 3 it was because he had an infection in his spleen. I think that's on your left side. :-/

Hope you feel better over the Christmas break.
🙂

[MicheleParticipant]

A very Happy Christmas everyone and wishing you all a healthy, good quality of life New Year.
Take Care and don't misbehave (too much) over the next few days!!
😎

[MicheleParticipant]

Great news Helen.
Your posts are similar to mine (fortunately) more positive and upbeat. Please don't feel guilty about good news. I think it's important for us to tell of good news. As you say it balances out the not so good news and hopefully encourages those on the road behind us.

Remember, we were the frightened, poorly ones once and have done our first grind through the mill.
Let's hope all our friends on here go "onwards and upwards" in 2013!
🙂

[MicheleParticipant]

I sometimes, but not always have a bit of a sniffly nose a few hours after my infusion and then a few aches 2-3 days later.
It doesn't last long at all and is a very common side-effect.
Shows it's working!
🙂

[MicheleParticipant]

Thanks for your comments.

What I should have added was that it didn't take me until now (10 months) to feel my old self again. looking back I really started picking up back in May, just after my hair had started growing. So, 4 months really. 🙂

[MicheleParticipant]

I go every 4-5 weeks in Poole Hospital. The care there is first class.

[MicheleParticipant]

Hi Tom
I had my SCT in February and even if given the choice would personally have not gone on any maintenance therapy.
I feel that my body has recovered well and my quality of life has been very good. I also feel that being (daily) drug-free now means that when a relapse does occur, my body will respond as positively as it did last time to treatment.

I've been on Zometa since June 2011 and have been told that they'll keep using it until it stops working.

However, as I said. This was my personal choice and everyone is different.
🙂

[MicheleParticipant]

Hi Andy

I totally agree about the banana advice.

When I had my STC, my potassium levels plummeted and I was given those ghastly tablets.
I only took one and decided they were so vile I'd rather eat bananas to get my potassium levels up.

Consequently although rather naughty, I managed to dodge taking any more pills that were handed to me and seemed to lose them in my handbag. 😎

The bananas? They did the trick! 😉

[MicheleParticipant]

Hi Jean

I don't remember feeling sick after CTD but wasn't too good during and just after STC.

Whenever I felt a bit queasy I kept sipping soda water. It seemed to settle my stomach.

It may help Frank.
🙂

[MicheleParticipant]

Hi Phil

Fortunately I was only neutropenic for 4 days. As I said, the count did bob about a bit for a few days but as far as I know it started to climb VERY slowly after that. It was only 0.2 increase every month but always in the right direction.

You look as though you're a similar age to me so as I said, don't panic. It's very early days for you yet and as long as you keep everything clean, stick to a clean diet for the time being and keep away from germs spread by people, I'm sure you'll pick up again very soon.

It's all about self preservation just after SCT no matter how insular and selfish you have to be. 🙂

[MicheleParticipant]

Hi Phil
I had my SCT 9 months ago and can clearly remember the obsession with the neutrophil count.

I had my transplant on the 10th February and was then sent home until the count fell to 1. That turned out to be on 16th February when I was put in isolation. It held at 0 for only 2 days and I was given 2 GCSF injections on the 18th and 19th. By 20th, the count had boosted up to 2.5 and I was able to "escape" on 23rd.
Only a week in isolation was the hospitals record time from what I've been told!

My specialist told me that the neutrophils are the slowest things to recover from the SCT which is why we have to be so careful with cleanliness and diet etc. and the count can bob about a bit in the early days, so don't panic too much. 🙂

[MicheleParticipant]

Hi Lizzy and welcome to what you've already discovered to be a brilliant forum.

I was diagnosed in May 2011 and had 6 cycles of CTD from June to November 2011.
Fortunately I had no kidney damage at all, but as a precaution was initially given allopurinol.
I had a red itchy rash start up after about a month. When I showed it to my specialist she immediately took me off the allopurinol and it cleared up within days, so I think it must disagree with quite a few folk!

I hope your mum improves very soon.
Michele x

[MicheleParticipant]

Good news indeed.

I can remember the feeling of "no more holidays ever again" when I was first diagnosed but of course I now know that to be totally untrue.

We've been busy planning (and booking) lots of little holidays for 2013 already.

At the end of the day, you've just got to go for it while the goings good!
😀

[MicheleParticipant]

Fortunately I had enough stem-cells for 2 transplants, so 2 bags of mine are frozen for (much) later use.
When I asked I think they said they'd be stored for 10 years. If I'm still bouncing around at that point without having used them I don't think there'd be any question of destroying them. There's just a "10 year storage space" rule I think.
Hopefully, in 2022 I'll be able to test the theory and ask them to keep the stem-cells for another 10 years!!
😉

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