[tomParticipant]

Hi Kerrie

Welcome am sory to hear your Mum has got MM and had a bad time with CTD I was on that in 2009 it was a struggle to be honest I did 5 sessions that put me into remissin then Stemm Transplant also in 2009 doing good now 😀 I wish your Mum well with the the new treatment but that also might make Mum ill and weary am afraid.

hugs to you both at this difficult time.

Love
Tom "Onwards and upwards" xx

[PeterJamesParticipant]

As a newly joined member of the MM society. i was diagnosed with MM in June this year.By a stroke of good fortune if that is the right word a routine blood test unconnected with MM showed i was anaemic which was enough my Doctor to send me off to see a specialist who made sure i was anaemic by draining off yet more blood every time he set eyes on me, also X rayed every bone in my body . then he was sure i had Myeloma , but for some reason fenced around the word cancer. Next day i saw my excellant consultant gastroenterologist. who after drilling into my rear end with a brace & bit announced i really had MM .Luckily due to my doctor, i am at stage one.
Took a few days for this to sink in but then common sense kicked in & thought stuff it i am going to beat this come what may. Now just started my 3rd cycle of 6. Then looks like a SCT in Jan at Christies.
I am responding well to the poison ( CTA, DEX & Thalidomide) i am chucking down my throat with few side effects. I like the steroids, they get rid of all my arthitic bits for four days ! Also turns my from nice placid old guy to Rambo with attitude
My wife understandibly was very stunned with the news but is giving me superb support along with family & friends. The hospital team are also marvelous.
I am now researching all the new treatments etc coming along & very interested to see how other people cope / get on with their treatments . lots of them seem very much worse than me , so in a way i feel very lucky with my early diagnosis
So we try to lead a normal life & not let this pirana as i call it interfere with our lives as little as possible, although being very careful to avoid infections
So still working part time, well past sell by date & bus pass era
Peter

[MicheleParticipant]

Good to meet you Peter, even under such unfortunate circumstances.

You've got the same positive attitude to MM that I've had from the start.

I had 6 cycles of CTD and a STC and like you, tried to carry on as normally as possible.
My hospital team are wonderful and even though I'm now in remission and don't have to see them very often (thankfully!) I know they're there if I need them.

When you're doing your research on the internet, bear in mind that there's a lot of rubbish about MM out there as well as out of date information. This Myeloma UK site is the best and I also keep an eye on The Myeloma Beacon which is a US site that is very up to date with current treatments as well as those in the pipeline.

Speak again soon no doubt. Take Care.
Michele

[PeterJamesParticipant]

Hi Michele
I now stick to Myeloma Uk & the USA lot
Also signed up to the Manchester Radisson Hotel open day on 22 nd Sept, where I hope to pick up a lot of info & advice
I' ve said to my family , if the Taliban find a cure in Helmand province I would be there tomorrow, failing that the radisson will do
Best wishes
Peter

[Earthangel79Participant]

Hi Rachael,

Thanks so much for responding. Its good to hear about someone who is doing well on Velcade. Its great that your mum?s pp levels have come down so much. I really hope it has a good effect on my mum too. I think the CDT affected her emotional state a great deal and I?m hoping the Velcade won?t as much. We are going to the hospital on Thursday to see when she starts the Velcade, I think the CDT is still in her system so might have to wait another week or two.

Take care
Kerrie

[Earthangel79Participant]

Hi Rachel,

My mum is being treated at Basildon Hospital in Essex, so pretty far from Nottingham which is a shame! My mum also had a rash and terrible indigestion which made her feel sick all the time, she?s lost over a stone in weight and she?s pretty slim anyway. She was just very tearful and emotional all the time and it was very hard to see. She would get so down and in the end although I wanted her to carry on with the treatment I can totally understand why she feels she can?t. Well done to you and your Dad for convincing your mum, it can?t have been easy.

I?m really glad your mum is doing well after her stem cell treatment. I hope she gets better and better.

I?ve spent days crying too and even now sometimes it will just hit me and I think about what the future holds and how will we all cope but I guess we just will when it comes down to it.

I?m doing my best to stay positive and I know if she can get through this treatment she will realise she can have a normal life with the cancer and go out and do all the things she loves to do still. This weekend it was her birthday and it was so nice to see her laughing and smiling. She went shopping for the first time in 4 months and she burst into tears because she was so happy.

Definitely send me your email and we can keep in touch more on that. Would be great because as you say we know exactly what each other is going through.

Big hug, stay strong
Kerrie

[Earthangel79Participant]

Hi Tom,

Thanks for the hugs. Glad to hear you are doing so well now. Gives me a lot of hope that one day my mum can feel like you do. I agree I think the Velcade will still be tough but im just hoping it doesn?t make her feel so down and emotional. If she can have a few good days a week as well as the bad ones that will be good.

Take care
Kerrie

[tomParticipant]

Hi Peter and Welcome to our merry band (Yep we have drinkers here)
keep throwing those pills down yer throat as its working

Tom "Onwards and Upwards"

[tomParticipant]

Hi Kerrie

Your Mum will be Ok when all is sorted out its just a one day at a time 🙂

and seeing how the hugs were good am sending more for you all

Love and Hugs
Tom "Onwards and Upwards" xx

[PeterJamesParticipant]

Hi Tom
I was told to drink 3l per day of anything that was wet, so two or three beers & several reds gets me well on to the target
On a more serious note reading the many postings from people who have been diagnosed disastrously late , who now need new hips or or well past stage one
In my case there were on or two clues over the last 12 months but no one picked them up & I think I was very lucky for my early diagnosis
But a lot of other people some very much younger than me seem to have slipped through the net, that's if there is a net
Seems a shame in this hi Tec age , quicker diagnostics are not to hand with this very insidious disease
Must try & get my mug shot on
Peter

[missray2012Participant]

Hi Kerrie,

I cant seem to private message you. Drop me a message with your email.

Rach xxx

[Earthangel79Participant]

Hi Rach,

I tried to private message you the other day and couldn't seem to do it either! My private email is kerrie.ruddock@nomura.com. Drop me a line when you can, would be great to talk.

take care
Kerrie

[tomParticipant]

Hi Peter

Yes 3l min of fluid i add vodka red and beer to mine and so far it aint done me too bad Lol.

I was told I had a bruised rib or a pulled muscle ? which turned out to be MM am pleased I asked for a 2nd Opinion and got that same day both Dr's said same and I said I didn't thin k I did so Xray/bloods and as they say the rest is history.

All sorted and doing great now so like me and others on here it is a doable 😎

Mug shot will be good

Tom "Onwards and upwards

[PeterJamesParticipant]

Hi Tom
My specialist said as long as it was wet , drink it , now a dedicated drinker , was anyway!

Like you I was diagnosed by accident but at stage 1, little or no bone damage
Also very lucky to have been in BUPA since i was a spotty teenager, god bless my Dad !
Although I have claimed that much in the last few years, I'm surprised they haven't had me put down
Still managing to do the work that I really enjoy, but I have cut out all the long distance driving
Taken to CDT like duck to water, just started today on 4th cycle should get third cycle results tomorrow
If I put my mug shot up no laughing , I reckon you are a lot younger than me !
I find all the postings a great help & see to be in very good star company
All the best to our merry band
Peter

[tomParticipant]

Hi Peter

I love your specialist (b)

Its great no have no bone damage when first told you have MM, I still have none but have the ache's and pain's but am told not mm related (just older age)

BUPA is good my young bride (Elaine) was in a private wing at our local hospital (Scunthorpe General) after an op due to no beds in rough end :-/ and it was POSH posh POSH.

I was fine on CDT??just got tired and weak so had to go on sick during my 3rd cycle.

A promise I will give is MUG shot up and no laughing from me 🙁 but we have some Nawty folk on here so it wont be same for them all he he.

Keep well and Fit Peter

Tom "Onwards and Upwards"

[Author]

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