[kaychappersParticipant]

Hi everyone
Not been on the site for a little while. Lots been going on. Went into Barts to have stem cell harvest. After first day of collection, my consultant came round to tell me that whilst I was off the treatment of Thalidomide (which did not work) my paraproteins had increased and they did not want me to have the transplant. They continued with the stem cell harvest so they have them ready if the velcade, which I started this week does not work either. Very grateful they have an alternative for me. Finding being back on the Dex hard already. Very emotional but all part of it. Lets hope the velcade knocks the blighters into shape.
Kay x x

[DaiCroParticipant]

Good luck with the Velcade Kay,

I have just finished Cycle 3 and now have a week or so off before starting Cycle 4 a week on Monday (following a consultation).

The main side-effect for me has been fatigue and exhaustion.. the smallest thing seeming to knock me off my feet… but if you are willing just to lie still, read, watch Tv etcetera then you will be fine.:-P

I had one attack of proper-job Peripheral Neuropathy following my very first jab but since then…. a little in my hands and my feet, which were already affected, have gotten worse but nothing too drastic.

The good news is that I started my treatment on 264 Kappa Light Chains (I have Bence-Jones, light-chain Myeloma and I am not affected by paraproteins… but same difference) and after just two cycles Velcade had reduced the reading to 13. I also had a secondary tumour on my sternum which was growing apace and spreading across my chest and that was dealt with within 10 days! So, it seems to be working for me.

I'll try and answer any queries about procedures etc., … just ask.:-)

Dai.

[CarolBradley1Participant]

Hi
No wonder your emotional – after the ups and downs you have had just lately I think your allowed!
My lead up to transplant didn´t always go quite to plan either and I feel for you having to take the dex again – bad enough that your hyperactive (I was rather aggresive too which is really out of character for me) but it was knowing that when you stopped taking the dex after a couple of days and came down "off the ceiling" that you would feel absolutely dismal.
Having got through the lead up to and the transplant I should be full of good advice but as I think we all realise each case seems to be so individual all I can say is keep going as you are bravely doing now.
I hope your outcome is as good as ours has been and send very best wishes to you at this difficult time.

Love Carol ps I think you are entitled to indulge yourself a bit – you deserve a treat (or few!)

xxx

[kaychappersParticipant]

Thank you for your replies. My hair started falling out on Friday. They told me it wouldnt but I think it may be due to the chemo they gave me in Barts before stem cell harvest. Its ok I had my wigs and scarves ready. Going for the shave tomorrow as my partner is complaining of the hair in the bed ha ha.
Kay x

[eveParticipant]

Hi Kay

You must be so disappointed ,its not easy when you build yourself up mentally to have the treatment,i know you started treatment in January,many of the others who started treatment about the same time, are now approaching sct.
Slim started in February sct has not even been suggested!!! will be end of July before we see consultant.[Although i give Hints]Just talk about next stage of treatment to decide in July.So take heart at least your paraprotiens are down,and they have done the harvest:-)
I think a little retail therapy and pampering is called for;-)
Good luck with your shave, best wishers Eve

[CarolBradley1Participant]

Hi

Hope everything goes well – thinking of you.

You are so pretty I think you will look good with or without hair – lovely bone structure!

Best Wishes

Carol xxx

[MinParticipant]

Aw Kay
I feel for you, the loss of hair is a monumental event. i remember shaving Peters head in February last year and crying as I did it, after his 1st dose of melphalan, for harvest it was just growing back in May when he had his 1st sct so more shaving needed.
Last Sunday he was in hospital and I had to take in the shaver and do it again. It was not so momentous or frightening this time. But the white chemo bare head is a stark reminder of cancer. Might get the boot polish out while he is sleeping and darken it down a bit, or it will scare the grandchildren LOL. Wigs are not on the menu for men. But good luck with yours an opportunity to try a new style and colour.
LuvMIn

[kaychappersParticipant]

Thank you for your best wishes. My bone structure Carol is no longer like my photo. The Dex round face has totally got rid of that 😀 Back to hospital tomorrow for next Velcade injection. I bought two wigs Min, one for the professional look and one for the glamour look, although the glamour look is now a thing of the past as I have gone up 3 dress sizes and heading for the 4th 🙁 Oh well as Tom says 'onwards and upwards'

Kay x

[AMcGuireParticipant]

Bless you Kay, what a time you're having … though I do get a lovely warm glow from you, I feel your wonderfully positive attitude and fighting spirit will see you through this rough patch.

All I can say is that I'm thinking of you, wishing you well and sending more positive energy in your direction.

Sending love and healing thoughts
Angelina xx

[eveParticipant]

Hi Kay

Good morning to you all,another lovely day,hope you do not spend to long in the hospital Kay.Wig or no wig,fat or thin,you still will be lovely,its what,s in side that counts.
wishing you well.Eve

[BADGERParticipant]

Kay

good luck at the hospital dont worry too much about the hair the shaven look is all the fashion I hope all goes really well for you and the Velcade knocks this devil out. When I had chemo my hair got really thin so I had it cut really short more in a boys style left it that way will save time next time always been a bit fat so not much difference there
Thinking of you love Jo x;-)

[kaychappersParticipant]

Thank you all so much for your kind support and wishes. Was at hospital today and was told I am anaemic so they are going to give me lots of lovely blood on Thursday along with my chemo. Been told I will feel much better. So grateful for the team around me and glad there is a solution to my feeling so tired emotionally and physically so early on in the new treatment. I never really had any side affects on Thalidomide, so I am hoping that the velcade is already doing its 'thing'. Shaved head today and I agree Jo I think the shaven look is the new Jennifer Aniston 😀
Kay x

[mhnevillParticipant]

Hi Kay

Just wanted to send good wishes. Hope your wigs prove a knock-out!

Love Mavis

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