[VickiParticipant]

Hi My partner Colin was diagnosed in Oct 2011.he is measured by paraprotein (currently 1.2 after 6 cycles.bence jones light chains down from 31000 to 1300.anyone else measured by bence jones?

My first post to this site.we were distressed when we got the diagnosis because Colin had not been I'll (some back pain) but not unusual as he had back surgery 10 years ago. His Gp was very quick to spot a problem. This does not seem real but apart from tiredness and 1 bone lesion at the start Colin is quite active and can work- from home sometimes and at work. He is planned for a SCT when the response plateaus.

Keen to learn from others experiences and get some positives as I am still scared but trying to keep positive.Colin is v positive so I should take example from him!

Vicki

[mhnevillParticipant]

Hi Vicki

Sorry to have to welcome you and Colin to the Site, but I am sure you will find the support, and information you gain from being part of it, the best thing you have found. It has made such a difference to me.

It is good that Colin is able to maintain a reasonably normal way of life for the time being and that he is keeping positive.

Has Colin been having CDT chemo? My blood is measured by para proteins and 1.2 sounds very low. Hopefully the SCT should be very soon. Do keep in touch.

Very best wishes to you both.

Mavis

[VickiParticipant]

Hi, thanks for your reply.:-)

Colin is currently on a 3 weekly cycle of cyclophosmahide. (sorry about spelling!), dexamethasone and revlimid (lenolidomide) with the various extras of bone protection, stomach protection etc. We can't really see a pattern on the good & bad days although the steroids make him a bit hyper.

we know this is an individual condition….. The pp started at 17.

The SCt won't happen until treatment response levels out? I

Hope you are feeling good today.

I didn't think that this would happen to us but certainly it puts life in perspective!!

Vicki

[foxy555Participant]

Hi Vicki

Pete was diagnosed a couple of weeks ago, I really don't know what I would have done with out this forum. Such lovely lovely caring people!!!!

I am really sorry to hear about Colin,but as you know it really is an individual condition (OMG, I sound like an expert now), but no, it is only from reading the comments posted here. Pete is 57 and started his treatment on Saturday (CDT) and has to go for bone strengthening treatment tomorrow. I am really scared,keep looking for side effects (the leaflet information in the boxes of tablets are enough to make you panic!) Like Colin, Pete at 57 is fit, loved his golf until his upper pain started in December.

Anyway, the good thing is that only after 2 days of medication, Pete has had some respite from the upper back pain (his blooming shoulder is playing him up now), but don't know if this is connected or not.

I sometimes feel guilty posting on here, because I am not the one with the illness, but it is heartbreaking to see your partner in so much discomfort.

I wish you and Colin well Vicki

Take care

Ann
x

[VickiParticipant]

Hi Ann,thanks so much for this. Funny but Colin loves his golf too-before the lower back pain!,

I know what you mean about the tablets and feel the same as you-guilty about posting but all the same exhausted from the worry of it. I only discovered this site yesterday and plucked up the courage to put something on today. I read a lot of the posts beforehand and considering I'd never heard of the condition it seems more common than I realised! We were really nervous about the treatment-I still am but Colin is being so positive.

We've had some real ups and downs. One thing I realise now is don't read the Internet-very frightening. Fingers crossed for you and Peter….and all those with this condition. No expert but happy to share experiences!

Vicki & Colin

[foxy555Participant]

Hi Vicki

Anytime you need to talk, please do, you will be helping me as well!!!!

Have a nice evening

Ann

xx

[tomParticipant]

Hi Vicky and Colin

A warm welcome to the site 😀

I am the one with the MM and My Young Bride (Elaine) is the watcher (dont like the word carer) and I also have been a "Wathcer" as well as a MM'er as Elaine had Breast Cancer i 2008 and as you now know I got MM near as one year to the day Jan 2009 so we have both been patient and watcher's and am sure me being the "Watcher" is harder than being the Patient.

Good Luck to you both in the road to remission

Love

Tom "Onwards and Upwards" xxx

[CarolBradley1Participant]

Hi and a warm welcome to you both, although I´m really sorry that you had to join us.

Your quite right to be positive there are lots and lots of new and exciting things coming on line and much more developing.

I had my sct last February 2011 and I won´t say that recovery has been quick I am certainly improving all the time. Today I have been out horse riding cross country ON MY OWN which would have been unthinkable during the last couple of years.

Hope all goes well for you.

Best wishes

Carol xxxx

[VickiParticipant]

Ann, that would be great. It's good to know there are others out there with the same concerns!

This forum along with the medical teams can keep us buoyed up:-)

Vicki

[VickiParticipant]

Tom,

Thank you. I hope you and your 'young bride' are both doing well. Thanks for the encouragement. You are right about caret word-nice to be cared for but not wanting to make our partners feel helpless!

Vicki

[VickiParticipant]

Carol,

Thank you-it's very encouraging to hear of your activity after a SCT and that you can do normal things again.

Question I have for the medical teams though is-with the SCT how close are they for developing a process to clean totally the own stem cells returned to the patient rather than leaving a 'residue' . That would give longer remission.?

Good luck with yours and a happy life!

Vicki

[tomParticipant]

Hi Vicky and Colin

Yes My Young Bride (Elaine) and I are doing great thanks, just waiting for the warmer weather to arrive 😎

Ps I think I might have something wrong with me :-0 :::::::::::::::::::::::::::::::: I dont like Golf Lol

Love
Tom "Onwards (and golf free) And Upwards" xxxxx:-D

[AliParticipant]

Hi Vicky and Colin

Just thought id say a quick hello.

Its my mum with Myeloma, she was diagnosed Nov 2011 aged 57 and has had 5 cycles of treatment and her PPs are also down to 1.2 from 31.5 at the start of treatment. Shes to see the consultant next week re SCT. Its all very scary stuff isnt it?. In a peculiar way we (as a family) want SCT to come and go quickly now to try and get back to some normality? I have found this site to be really helpful, although at first I had to read with my hands up to my eyes with open fingers ( like I did as a child when watching the Wizard of Oz ). I still cant believe its happening to us………..

Kind Regards Alison x

[VickiParticipant]

Hi Ali

Hi Alison

Thanks for your reply. It looks like your mum is in a similar position to Colin. I know what you mean about reading stuff. I want to know and then catch sight of something that then makes me worry a bit. Colin is still responding and waiting to start cycle 7-delayed a week due to blood count too low!

It is really scary and I have days when I go down the what if this or that happens……not good. I am pleased I have posted on here as everyone is really supportive. I share them all with Colin. Colin is really keen to get onto the SCT. We are told that as long as he is responding they will carry on with this bit for longer. Do you know what your mumbenefice Jones light chains figure is?. Colins is 1300. Like you and your family I am keen to help Colin through the SCT- although looking forward with trepidation.

I hope all continues to go well for your mum.

Take care
Vicki x

[CarolBradley1Participant]

Hi Vicky – that´s the very question I would like to know the answer to.
I have decided that because the cancer didn´t develop fully until I was 52 after my stem cell transplant in February it might take another 52 years to come back again!!!! (Well one can dream).
Please let us know if you do get an answer.
Cheers
Carolxx

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