[GillypearceParticipant]

hiya Tom, only found out about it yesterday at my chest clinic appointment apparently it showed up on a ct scan that I had when I had pneumonia. Ive got to have another scan in April to see if its grown and then I have to have them repeated every 3 months for at least the next 2 years. Did the old googling thing and fright meself as you do – but I'm up UCH on Thursday for me latest pp results so am hoping Dr Yong can enlighten me. Hope you are keeping well and the young bride.

love Gilly xx

[GillypearceParticipant]

Hello there – I haven't been on here for a while but as a cat owner I just wanted to say that when I came home from my SCT in September 2010 my cat Kiwi was a god send. As visitors were very restricted she was my only company most of the day and sat by my side throughout. I am still (fingers crossed) in remission and yes I get endless infections but its humans that give me problems – flippin pneumonia and endless chest infections. Hope all is going well and good luck for the future.

love Gilly xx

p.s. latest problem-I now apparently have a 'lung nodule' -anyone heard of that one ??

[GillypearceParticipant]

Morning David,

Not been on here for a while – glad your paraproteins are still low and hope they stay that way. I had my 3 month check a couple of weeks ago and the pps are still too low to quatify. Do you ever suffer from leg pain I find they keep me awake at night – I sweat a lot aswell but don't no if thats just coz I'm a laydeee!! Hope you are keeping well – not my favourite time of year coming up – start of the cold and chest infection season – Anyway
lots of love and postive thoughts to all you fellow members

Gilly
xxx

[GillypearceParticipant]

Dear Bridget I'm crying as I write this I really, really hope you are ok. I will never forget your kindness when you came to see me at UCH on the day of my SCT – I haven't been on here much -too busy trying to do normal things and forget I've got this bloody illness. You are such a kind person and you knitted me my hats !!! Please keep fighting I am praying for you and sending you lots of love

Gilly
xxxxx

[GillypearceParticipant]

Hello I haven't been on here for a while but was just reading other posts and thought how sad it is so many of us are living our lives with para proteins (I hate the word) wish I had never heard of it – sorry – I'm so glad that yours are coming down – Ive got my check up next week to find out if the little devils are creeping up again and if one more person asks me where ive got skin cancer I think I will scream !!! I'm sorry again I'm coming across all moany but I'm in that sort of mood today – have a lovely rest of day everyone and don't let the b******s get you down

lots of love
Gilly xxxxx

[GillypearceParticipant]

Hya Tom, I had about 9 sessions of Zometa before I had my transplant. Can't have it anymore coz I got osteonecrosis of the jaw – can you believe it only 3% chance of getting it and I had to be one of them !!!!! Half the trouble with this flippin illness are the side effects of the treatment. Never mind I'm still here and fighting. The only medication I'm on at the moment is lansoprazole for indigestion, aciclovir to stop me getting shingles again and gabapentin for the neuralgia Ive still got from the shingles I did get in February. Think I'm extremely lucky compared to some poor folks I read about on here.
Onwards and Upwards xxx

Gilly

[GillypearceParticipant]

Hello Tom – I haven't been on here for ages – for thems that don't no me I was born in 1955 (excellant vintage eh Tom !) and live in Chertsey in Surrey. I'm under my local hospital and UCLH and am 15 months post SCT and (fingers crossed) still treatment free and in remission. Last para protein was 7 which is fine. In cas its ages before I'm on here again MERRY CHRISTMAS EVERYONE & A HEALTHY NEW YEAR !!!!

Lots of Love
Gilly xxx

[GillypearceParticipant]

I'm seeing occ health on Tuesday – In September I managed to get my hours reduced to 20 per week (after applying in May) I had to wait until they could find some one to job share with me. I agree with you I think they want me out because at the meeting my manager kept emphasizing how stressful and pressurised my job is and perhaps I would be better off working in a different department. I happen to love my job (outpatient appointments supervisor) so I'm gonna go kicking and screaming. Just as well I'm not having any treatment at the moment coz then I think it would be a different story. At this meeting I was issued with my first written warning and told I would be monitored for the next 3 months. I did mention my myeloma but my manager just said that everybody has to be treated the same with regards to our trusts sickness policy. I am seeing my consultant at this hospital where I work in December – it will be interesting to hear his take on this.

[GillypearceParticipant]

Morning, Ive been with my employer for almost 21 years and stupidly didn't join the pension scheme . I turned 56 last birthday. If I could afford to walk away I would I just can't believe they are being so blinkered in their atitude. To make matters worse Ive now got another chest infection so tomorrow I will have to go to work ill and not do my job properly. My manager tried to say that some of my sickness is not myeloma related until I pointed out about compromised immune system. Just could do without this c**p.Still its nothing compared to what some of you guys are going through and I'm sorry I shouldn't moan it just beggars belief sometimes.

Enjoy your Sunday
Love Gilly xxxx

[GillypearceParticipant]

Manuka Honey is supposed to be good for your immune system only trouble is the best ones are a bit expensive – about £10 a jar. Mind you Ive now got yet another chest infection so maybe its not much good after all !!!

[GillypearceParticipant]

I haven't been on here for ages coz my pc has been playing up – to all who might remember me hello and how are you all doing ? I had to reply to this post – I also had my SCT in Spetember last year and my para protein has started to go up again (last reading was 5) but both UCH (where I had it done) and my local hospital are not bothered about the increase. My next follow up is in December . I'm not on any treatment at the moment – only taking usual stuff for side effects from previous treatments. By the way has anyone tried Manuka Honey ? I'm having a tablespoon a day and swear by it! Anyway stay positive and try not to worry (easier said than done !)

Love to you all
Gilly xx

[GillypearceParticipant]

Hello David, you where right and I was wrong – it appears I heard what I wanted to hear at my last consultation and got the words remission mixed up with partial response !! Just received a copy of my clinic letter and its there in black and white – now I have to tell my family I got it wrong – s – At least I am in a good stable plateau phase and I'm back at work so thats something. My last pp result was also 4 again. My bone marrow trephine result was 5% polytypic plasma cells whatever that means. Never mind onwards and upwards – tomorrow's another day.

Love and best wishes
Gilly xx

[GillypearceParticipant]

Hello David, – Ive got a leaflet from the myeloma UK nurse which is called 'How do I know if my treatment has worked?' and on table 2 – Measuring response to treatment it says Complete remission response (CR) No detectable paraprotein in the blood and normal percentage of plasma cells in the bone marrow OR absence of myeloma cells in the bone marrow – which I'm guessing is me. All I no is I feel ok when I wake up in the morning and the less treatment I have to have the better. My PP was 24 at diagnosis in August 2009. I did tell my consultant last week that unless my levels rise dramatically there is no way I'm having a bone marrow biopsy done again and he said that was ok. Hope this has helped – maybe Ive got it wrong and I'm not in remission .

Love Gill

[GillypearceParticipant]

Hello David, I had my SCT in September 2010 so am now 4 months post – I have had 3 blood tests since that have all showed that my para protein is at 4 – my bone marrow biopsy was myeloma clear which meant (according to my consultant) that I am in remission. I am now on no treatment or medication and returned to work yesterday. Just have to keep my fingers crossed until April when I have my next appointment.

Love and best wishes
Gill

[GillypearceParticipant]

Hello David,

I did speak to the myeloma nurse but she hadn't heard of it either. Dr Rabin is ringing me on Monday with my latest para protein results so I will speak to him then. Have decided that if I'm in total remission in January I won't go on the trial and if I'm not I will give it a go.

Thanks for all your help
Keep well
Love Gill xx

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