[DaiCroParticipant]

This time last week I was neutropenic and my third cycle of Bendamustine was looking as if it might stay on the shelf… but my lead nurse said there was a good chance that my Neutrofils would rise above the 1.0 mark and allow treatment to continue. 😉

I went in this morning and 'lo'!… and even 'behold'! My Neuts had reached the staggering heights of 1.49!. HGB 10.1 WBC 3.65 Platelets 101 – so it's carry on with Cycle 3 tomorrow.8-)

They still haven't received an up to date FreeLite test result, which irked the consultant… she is going to chase them up (I have had 2 tests in the interim but neither have produced results for the consultant) and hopefully they will show a continued positive downward trend. 🙂

But the important thing is that I'm back in the game. 😀

Whoo, as my American friends often say, Hoo! 😎

Dai.

[jmsmythParticipant]

Welcome back to the game Dai. 🙂 With your determination it can be a game you can win. Hope you get a good result from the FreeLite

Love jean x

[tomParticipant]

Well Done that Dai
But am sure you know that we all knew you could and would do it (am sure that makes sence?)

And as This Scunny Lad says Onwards and Upwards

Tom x

[BADGERParticipant]

Hi Dia

a winner as always just keep on top of the game
Big Hug;-)
love Jo

[meganjaneParticipant]

Hi Dai,

That is wonderful news :-).I hope cycle 3 goes well and that when you finally get your free lite results that they have gone down.

Megan

[DaiCroParticipant]

Hi All,

Just got back from the Day Case Unit where I had infusion 1 of Cycle 3… infusion 2 to follow next Tuesday. Everything went smoothly, the nurse found a vein and captured it first go… we all kept an eye on it, checking and double checking as the saline wash went through, not quite believing that it could have been that easy but it was and everything else followed in the same pattern and now I'm home and looking to have a couple of days rest as the Bendamustine starts doing its job.8-)

No FreeLite results in as yet but I have a blood and consult meeting next Monday so perhaps then.:-)

It was good to meet up with Nicki(noo) and Sam in the waiting area as Sam waited for his Velcade infusion… the first meeting with a MMUK for nearly 2 years. We had a good chat about treatments and were moving on to other things when I got called through but Janet stayed a while before joining me.

Just one bit of advice for Nicki… Don't forget to be be happy… and here's the link I was talking about… good luck with the sausage dog. 😀

Dai.

[tomParticipant]

Hi Dai

Pleased the connected you up first time as its a devil if and when they collapse as used to happen to me when i was having Zometa evey four weeks was pleased when it was finished 😀

The Link http://www.youtube.com/watch?v=MdxsqeGS-Ms is and was worth a look it made me Laugh well done you two.

Tom Onwards and upwards 😎

[DaiCroParticipant]

Hi Tom,

My veins are a nightmare to find, you can see the nurses in the Day Case suddenly finding themselves very busy with other things when I am shown to a chair. 😀

There is a Chinese male nurse called Jeff who is 'bigged up' by the other nurses and he usually accepts the challenge and finds a way in… yesterday it was Liz, the first nurse to treat me when I came to Nottingham City Hospital in the summer of 2009… then she was a trainee but is now a hardened regular and she got one first time and I was cannulated in less than 2 minutes… several nurses popped across to have a look which I would have found insulting but Liz just gave an innocent smile and carried on regardless. 🙂

When it came to taking it out Liz was on a break and the nurse who took it out called over one of her colleagues to have a look… the end of the 'needle' was into the vein by a cat's whisker but it had worked and that's the only thing that matters. One more vein to catch next Tuesday and then 20 days rest before the next one. 😎

Doing the song was fun… Greg sent me the lyrics and asked if I was interested in putting it to music… he suggested a half-spoken, half-sung format but left the final decision to me so I went along with his suggestion and this is the end result. BTW [b]All[/b] the sound effects are me… including the howls.8-) Morris was still alive then but while he had a decent bark he couldn't howl for toffee but watching him as I recorded the howls was hilarious… he got really worried bless him. 😛

Dai.

[tomParticipant]

Hi Dai

It's great when one can get the vein first time, we had one Mature Nurse who used to crack it every time but she told me it was because she used to work on a baby ward and some time she had to get one in on the head of the poor child.

And as for the cats whisker am sure we would all be happy with that if it went in first time ha ha, you ought to put that link on Face Book am sure it will give many a folk a good laugh as for the sound effects I think the man that did the voice for "Sponge Bob" is now worth a fortune so it can only get better.:-D

Keep well Dai

Tom Onwards and Upwards

[DaiCroParticipant]

I had my pre-Cycle 3 Mk 2 consult today and my bloods are down (except for my platelets which stay at 105) including my Neutrofils at 0.8 which means I am neutropenic… again. It seems that this will be the pattern while I am on Bendamustine but that's OK as long as I can continue.

The 20 day rest period between infusion 2 and the next cycle allows my bloods to recover but not greatly (last Cycle Neuts went from 0.8 to i.49 and then down to 0.8 again). My consultant was happy for me to continue on half measures… the 2nd infusion tomorrow will be half-strength, as it was on the 1st Cycle and I am OK with that as long as it works.

Which is the good news… I started Cycle 1 on 2200 and came down to 880 after Cycle 1. The latest reading in (for Cycle 2) shows another drop from 880 to 580… and that is with just the 1 infusion for Cycle 2 because I missed infusion 2 due to an infection… so all in all very satisfactory… touch wood etc., but Bendamustine seems to be working, albeit slowly.

Baby steps but that's okay as long as this pattern keeps up.

Feeling teak and weary but hey! 😎

Dai.

[HelenParticipant]

Well Dai
If its working .. keep at it is all I can say, this teak you are wearing will no doubt be your wooden leg? I hope tomorrow's session goes ok.
Love Helen

[tomParticipant]

Hi Dai

Baby steps is good if its working no need to rush it and cause more side effects?
As for you feeling Weak and Weary well I will be same on thursday but am putting it down to cold weather 🙁 roll on Spring 😎

Stay Steady

Love to you and janet

Tom Onwards and Upwards xx

[VickiParticipant]

Come on Dai, no weary…you are our inspiration! Anyway numbers going in the right direction so it's working 🙂

Nicer weather coming soon, make us all feel a bit better, slow but sure 🙂

Vicki and Colin x

[DaiCroParticipant]

Thanks all,

I had Infusion 2 this afternoon, followed by a fix of Zometa… my first ever. My consultant said I had slipped through the net and that I should have been on Zometa for a year or so! Well there you go. 😀 :-0 Every 4 weeks from now on which will fit in with the Bendamustine treatment, so no extra journeys for the time being at least. 🙂

Fatigue seems to be the only perceptible side-effect with Bendamustine but I can deal with that… I just hope my bloods recover a bit better this time (last Cycle included a stay in hospital(. Hopefully I can get my Neuts to 2.0 or above which will see me ahead of the game and ready for 2 full strength infusions next time, which will hopefully force the light chains further down the scale. 🙂

Onwards and upwards rather than sideways, eh Tom? 😉 😎

Dai.

[tomParticipant]

Hi Dai

Good Luck with this one 😀 and am plesed the net found you albeit Late :-S , I went on Zometa in 2010 after my 100 day BMB after Sct and had them for two years.

As for the Fatigue well I have sort of starting to put mine down::

1) being less active since diagnosis

2) Just plain old getting Older :-S Lol

Dai its Ok to go sideaways for a little bit but Onwards and Upwards Is the way to do it and you my friend are doing it 😎

Keep well and keep your eye on your temp, make sure you dont blame it on the Zometa alone :-/

Tom Onwards and Upwards

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