[andygParticipant]

Hi Vicki.
A warm welcome to the forum. I have MM myself diagnosed October last year. There's not much I can add that hasn't been said already. Just remember everyone's journey through MM is different. Treatments vary some get bad side effects some get very few side effect etc etc. but whichever way the journey takes Colin keep the us informed and you can be sure any question or doubts you have will get an answer. We are a friendly and supportive bunch 😉

Take care
Andy x

[AliParticipant]

Hi Vicki

Light chains have never been mentioned by Mums consultant, its always the pp levels that have been the "magic number".

Andy is right though, it seems from reading on here that everyones treatment and reaction to the the treatment varies so much, and that is one of the things I am getting my head round. It certainly isnt a "one size fits all" which I suppose is a good thing at least the doctors have a few things up their sleeves!.

My advice (this is to myself too) stop looking at other websites and concentrate on this one, although its scary its full of relevant and up to date info, and continue to be positive about the future. Looking forward, Im going to be an Auntie in 3 weeks , Mums 3rd grandson so it will be all go here!

Take care both of you

Ali x

[VickiParticipant]

Hi Andy,

Thanks for your encouragement. I have read your posts and see your pps aren't moving…..yet!. Colin was told that his mm was more indicative from the bence jones light chains number, although from what I can see so far I'm the only one to mention these so far!,

I hope you get some progress soon,

Best of luck.

Vicki

[VickiParticipant]

Hi Ann,

I was just wondering how you and Peter are getting on with the treatment?. I tell Colin that the 'baddie'medicines are our friends because they are knocking out the nasties floating about in the blood.

Roll on when we can read they have found a cure or praps having an injection once a year!

Vicki

[VickiParticipant]

Hi Alison

Thanks for your info. I will certainly take your advice about the Internet. Keep me posted on how it goes with your mum and good luck with the impending arrival!

Vicki

[foxy555Participant]

Hi Vicki

Nice to hear from you, hope Colin is keeping ok and you too!

Yes Pete started tablets on Saturday, had a really good day Sunday, upper back pain actually disappeared for first time since end of December. He felt quite upbeat, no obvious side effects.

He went for a bone drip on Tuesday- Pamidronate (Aredia). (Has to go once a month for this). Really set him back, he felt quite poorly yesterday, but the symptons were as predicted and so it did not scare us so much. He does feel brighter today. Pete is still working, like Colin, but in bed by 8.30 pm and sleeps really well, I think I am right in saying that is the Thalidomide.

We received another letter from hospital today just confirming the diagnosis. They have said that once myeloma is under control with CTD then consideration will be given to an 'upfront consolidation high dose melphalan autograft' – (another expression we have not heard of), will have to look it up later. No mention of paraproteins measures, which is mentioned alot on this site.

Anyway, will let you go.keep in touch

Ann

xx

[OutdoorsPaulParticipant]

Hi Vicki
I was diagnosed in Aug 11 with MM the Bence jones type,if you have any questions i will try to help.
cheers paul

[PerkymiteParticipant]

At the moment I just have the bog standard G Myeloma so can offer no advice on the measurement of light chains. I just wanted to wish Colin well and give you a warm welcome to the site, which is the best site around for all things Myeloma.

Kindest regards – vasbyte

David

[foxy555Participant]

Hi Vicki

I have posted a general message, but just wanted to know how you and Colin were? hope you are both well.

Really think that it has just hit me!!! Seeing Pete so poorly, just feel so useless and sad. But saying that, so many positive comments on this site, can't spend time feeling sorry for myself!!! – Pete is so positive, despite his pain and I am very tearful at times!!! So who is the selfish one!!!

Anyway,have a good evening, weather has been lovely down here in Somerset today, but apparently rain again next week!!!

Take care

Ann

[VickiParticipant]

Ann,

I can really understand where you are coming from. My feelings go from elated when Colin can do stuff ie yesterday some work in the garden then totally shattered by that!. And slept for most of the early evening and beyond. I can tell you I have shed some tears over this…..why us but why anybody on my sensible days! (try not to say any of that it front of col).the helpless thing I would imagine is common. I have scoured the website,but only looking for the one that says cure found!.

Colin has had some real good infections and that can be scary…..but I am sure we feel like all the others and can only stand by and keep supportive. Col started cycle 7 on Friday so it's hear we go again. From my experience col goes up and down,good and bad days, we need to be strong in different ways. Keep in touch ….remember this won't be forever. Roll on stem cell transplant:-)

On by the way we live in Gloucestershire so not too far from each other….who knows we might be able to catch up on a good day!

Vicki x

[VickiParticipant]

Hi Paul

Thanks for this. Was wondering if anyone would mention the bence jones scores. Would you mind sharing with us where you started in terms of a number and also what your paraproteins were. What stage are you at now?

Colin had just started cycle 7 and the last results we have is 1300 for the bence jones and 1.2 for pp.

The reductions each time are getting smaller but we assume that this is because there is less mm present. Would be interested to hear any of your experiences and how you are managing day to day

Regards

Vicki and Colin x

[VickiParticipant]

Thank you for your reply. We've gained some really useful information already.

I seem to remember reading some of your posts and that you've travelled a bit? Cruises/cycling in the new forest-hope that's you. We are concerned about going too far due to Colin having had some nasty infections and temperature going up quickly which resulted in a rigour ( shaky uncontrollably and hard to get breath).how do you manage with travelling and making sure that medical help is available to you if you need it? We like to travel but don't want too at the minute!

Regards

Vicki and Colin x

[OutdoorsPaulParticipant]

Hi Vicki and Colin
I was diagnosed in Aug 2011 after my wife and I returned from one of our regular trips to Northen Scotland,cycling,camping,hill walking sort of stuff,I am 40 years old so one of the younger end on the site.
I cant remember what my initial counts were as my head was all over the place after the diagnosis.(I also had lower back pain which was caused by a tumor,had radiotherapy which seems to have worked).
I have the Bence Jones MM and was initially placed on the Myeloma 11 trial-Revlamid Cyclophosphamide Dexamethasone (RCD)I had 4 cycles which worked well and Bence count came down to about 3 or 4.Xmas came and went,we went away back to Scotland at new years (not taking any meds now due to planned SCT).Then started with the rigors (shakes and cold) on return took my temp 38.5,phoned hospital and straight in.Back out after 2 days.1 week later same again but this time in hospital for nearly 3 weeks with a raft of tests and scans.
My Myeloma had come back with Bence count up to 2500,plus the news that I have a "rouge" gene which is linked to tuma formation…happy days!:-S
So I have just ended my 4th cycle of PADS treatment.(valcade Bortizombe Dexamethasone) and Bence count is down from 2500 mark to 37 still awaiting last count.
I have been lined up for SCT and all initial tests completed OK.Tomorrow i am due into Hospital for Cyclo priming the build up to the autograph stem cell transplant.If all goes ok end of May they will harvest the stem cells and actual transplant in early June.My consultant has told me they also want me to go for 2nd transplant later in the year called an allo graph as i am young enough for it and its a possible cure/longer remission.
So that's where I am, hope I have not rambled on….if you have any questions please please ask away.I shall go and pack my hospital bag ready.
Stay positive even when those thoughts creep in.
cheers Paul

[OutdoorsPaulParticipant]

Hi Vicki
AS regards managing on a day to day basis my experience has been it depends at what point in the cycle you are and what meds you are on.You and Colin should start to notice a pattern of how Colin feels taking certain meds.
I.E When I take Dexamethasone over 4 days,day 1 is ok no problems..but days 2-4 my sense of taste goes out the window and i dont eat much but nibble when i can,plus i end up with hiccups which can go on for 1hr.Day 5 hiccups stops and taste starts to return.Keep a diary of side effects and see if you see a pattern emerge.There are days when i feel tired so I do less,then there's days when you feel in top form so you can do more.Colin just needs to listen to his body and go with the flow.We love walking and visiting places of interest,cycling abit.I would say that I have been quite lucky so far with minimal side effects.
cheers Paul

[VickiParticipant]

Gosh, you sound like you have been through it! First of all- the very best of luck to you. We hope that this next phase of treatment goes well and you can get back to normal and enjoy the things you and your family do.

Colin had those rigours- they are scary when you don't know what it is!,

Colin is on the myeloma 11 trial and the light chains seem to be coming down each time…..hopefully that will continue and get down to as low as possible. They are planning an SCT for him too- we don't know when yet. Do you get very tired? Do you manage to go to work?

Keep us posted on how your treatment goes and once again very very best of luck with it over the next few weeks.

Vicki & Colin x

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