[GayeParticipant]

Hello Debs – I'm not sure if I should be here as I am way over 50 but just wanted to say good luck for the start of your treatment. I only had a year of smouldering and then the b****r needed treatment. I have not had CTD so can't answer your questions but I do hope that it treats you kindly. As for the dex,:-S well I'm afraid it has to be endured, but it is a means to an end and one that I hope will give you a complete and long remission. You deserve to have that.

Good luck you know that we will be rooting for you all the way8-) .
Love, Gaye xx

[GayeParticipant]

Hello Michelle – sorry to hear Mum has pneumonia and I do hope that they can sort her out very quickly – let's hope as quickly as Bridget. How typical – I don't want to spoil the holiday. Yes, she probably is stubborn but sounds like a fighter as well.

Please wish her well quickly so that she can start on her next treatment.
Gaye x

[GayeParticipant]

Yes, we all seem to like it on here so the more the merrier and now you can see us in all our glory. Glad that you could join us at last!
Gaye x

[GayeParticipant]

Dear Sarah – Like David I wish both you and Gordon all the very best as he goes for his second SCT. I think I was more anxious about my second SCT because having gone through one I somehow knew what to expect but thankfully all was well. I am sure it will be for Gordon too.

Will be thinking of Gordon in hospital and you going mad with the Christmas shopping!
Love, Gaye x

[GayeParticipant]

Don't think you can get away with not having the tests David – there have to be some perks in having a SCT! Yes, like Sharon, mine varied from yours but it probably depends on the type of myeloma that we have. It's all becoming a reality now and you know we will be here to spur you on in the same way that you do for others.
Love, Gaye x

[GayeParticipant]

Good point Bridget about who decides. With the GPs supposed to be taking over all the cash I have misgivings about their generosity when you think of some GPs. BUT, they will be medical rather than lay people who currently decide so hopefully it will be better. Only time will tell but to give NICE its marching orders is everything it deserves. Tatty bye NICE!
Love, Gaye xx

[GayeParticipant]

Hi Tom – at last a close-up of the now infamous socks and crocs. They are stunning and I really can't imagine why your kids are so worried about you …….! The photo of grandad and grandson is lovely but what's with the Spanish football shirts? Has Wayne Rooney upset you!

Lee – your photo of the droplet is terrific. I can understand why you enjoy photography so much and I always love to see photographs of mother nature at her best. Your bumble bee picture will certainly stay with me particularly through our long and dark winter. Thanks.

Best wishes, Gaye x

[GayeParticipant]

Dear Min – I also have PN after Velcade but as to preventing it, I am not sure if there is anything out there that could help. However, I have had Velcade twice and I have noticed a pattern as to when mine started.

On my clinical trial 6 years ago I had 4 cycles of Velcade at full strength and had no PN at all. On my second course this year I noticed some numbness in my toes after the 4th cycle. Foolishly I didn't report it straight away and when it became obvious I had PN they reduced the dose to once/week. By then the damage was done and I eventually came off it. The trouble is everyone responds differently so I can't say this will happen for Peter. I would just say that the moment he feels any sort of odd sensation in the feet/hands to report it before it takes hold.

Mine is slowly recovering although I don't take anything for it. It doesn't hurt to walk but I know for many that it does. I can imagine how much you both want this Velcade to work and I send my love and good wishes for the time ahead.

Love, Gaye xx

[GayeParticipant]

Dear Bridget – Just thinking about your title and my hospital experience on Thursday with A & E at my local hospital. I was in and out in about 2 hours. Everybody was very helpful – no sooner in X-ray department when I was called and then I saw the doctor who was polite and caring. We all too often hear the moans and groans about the NHS but this was excellent service. Well done.
Love, Gaye x

[GayeParticipant]

Dear Bella – It looks like the ladybirds are gathering for their Annual General Meeting! Amazing to see so many together. Is it me again or does anyone else feel a bit itchy ……….. ?!

Thanks for posting a very unusual photo.
Gaye xx

[GayeParticipant]

Thanks Bridget for your kind words – whether you are on dex come-down days or not you are always there for us so blow eloquence! I decided to make yesterday a hospital day but not intentionally. After having my blood test in the morning I then twisted my left ankle getting up from the settee and yes, back again, this time in A & E. It came up like a balloon but after a good night's sleep and a bag of frozen peas on the offending ankle, is returning to near normal size. Diagnosis – a sprained ankle. Oh dear!
Love, Gaye xx

[GayeParticipant]

What a wonderful photo – just the right image to see first thing on a dreary and cloudy October morning. Thank you Lee. Bridget you did make me laugh about a photograph of your estate but beauty, so they say, is in the eyes of the beholder!

Love, Gaye xx

[GayeParticipant]

Thanks to both Donalb and Stuart for the advice. I did not understand the use off threaded and flat but do now. I shall know what to do in future.

Gaye

[GayeParticipant]

Dear Tina – Patrick has certainly been through the mill but I am sure all your love and wonderful support gives him so much. Well done and I admire you both the way you are living with this. It's good to know that despite all his treatment he is actually feeling ok right now – great! May it long continue.

I have managed an increase in platelets of 1 from Monday – a small but important move upwards for that I am grateful! Next test on Tuesday.

Thank you again for all your help and let's try to keep hold of our positivity.
Love, Gaye xx

[GayeParticipant]

Dear Tina – thanks so much for your very informative reply. I think I have just started the 7th cycle of Revlimid at 15mg. For the past three months we have added an extra week's break along with one I had earlier on so it may be my 6th. Normally during the break my counts start rising but after 2 weeks my platelets in particlar have dropped when usually they rise on their own. This has meant infusions and of course I take the GCSF injections as the neutraphils also drop. To know this has happened to Patrick makes me wonder if Revlimid has now begun to get too toxic for me. My consultant suggested this might be the case but we are carrying on for another cycle to reassess the situation.

I am in a 'plummet' stage, more of being in a no-mans land, and it's all a bit scary. The pox to myeloma and but thank you for your invaluable help.

How is Patrick doing?

Love, Gaye xx

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