[mhnevillParticipant]

Hi everyone.

Have been off line for some days because I am in hospital! Has took me several days to get my BT dongle working!

Went into a sudden decline last week. I got so bad with the pain that I couldn't hold any weight on my legs. I was worried that it might be spinal chord supression like i had my initial battle with MM. Fortunately I was already booked for a skeletal survey and so they said they would see me before that. I took a case, as I knew I couldn't come home, and they did admit me and I had an MRI scan Thursday night. Good news was there is no chord suppression, but the skeletal survey shows my bones full of holes and showed, as well, that my hip replacements have shifted!

It has all been a shock, as you,can guess, as I have been hoping the zometa infusion had been keeping my bones OK. However, at least not being in the system, I am being dealt with as a whole person. They are looking into proper pain control – it is already taking some effect, they are dealing with other problems and won't send me home till we have got about a proper way to move about, and in and out of bed. My consultant is worried about possibility of stress factors. She has been wonderful. She spent nearly an hour answering my questions. I must admit I didn't realise that everyone would have bad bone involvement with MM. Just shows how much we all have to take on board.

I talked about prognosis, and, all things being equal, things should carry on. The consultant said that at least it is a good time as possible, to be coping with this because now, if/or when CDT doesn't work any longer, NICE allows her to put me dirrectly onto Velcade and then Thalidmide alternative.

And, as Dai always says, there is more down the line!

The thing that was rather mind blowing was to be asked by Pain Doctor whether I wanted to be rescusitated!!!! I said "no", but on the basis that I am not expecting to have a major heart attack any day yet. The argument in favour of saying "no" is the current damage to my rib cage. I didn't realise that only 2% of folk who are crashed survive, and lots of them never really make a good recovery. You live, hopefully, and learn!!!

You can see I have had an interesting week, but I remain positive which the consultant says really makes a difference.

So far no bad effects from CDT after first week and kidney function has got remarkably better.

Lots of love to you all our there.

Mavis xxxx

[DaiCroParticipant]

Ouch…

Sorry to hear you are having such a hard time of it Mavis… but you are in the right place and every test they do now will stand you in good stead once they have you balanced and going forward.

I too found that I was/am riddled. With a starting block stat of 3,600 Kappa Light Chains I am not surprised but although I was sent to see a consultant bone doctor who advised pinning of upper and lower left arm, upper right and, most urgent, left femur, the decision was made to suspend treatment until a year after my SCT… only I relapsed after 10 months and the subject hasn't arisen since then.

I walk without a stick but not far at any one time… I suppose I have a range of about 0.25 of a mile… tops… before I start seizing up… but a short rest does the trick and then I'm okay to go again – and as for Zometa… never been mentioned… daily Bonefos only for Dai – but that's okay by me – better than the alternative anyway.

I am sure they will straighten you up and get you back on track soon Mavis… many of us have been exactly where you are now and recovered to go a fair distance… your SCT, when it arrives, could give you a long remission and the new medicines on trial will all come online in that time, of that I am convinced.

Chin up and borrow my mantra… 'Whatever It Takes'.

Dai.

[jmsmythParticipant]

Dear Mavis

I am sorry to hear that you have had a really hard week and such a bad time. My thoughts are with you, keep positive. God bless
Love Jean xx

[GillParticipant]

Sorry to hear your bad news Mavis fingers crossed for CDT to kick the beastie into touch

Gill x

PS Stephen also has holes in his bones in fact he has what is known medically as a " pepper pot" scull the x ray of it was aweful having a very sick sense of humour he jokes that his scull would make a darned good hanging basket for geraniums

[HelenParticipant]

Oh Mavis I am sorry, I have been wondering what had happened to you and your appointments. Hope they manage to get you on your feet soon and the CDT does the trick.
Helen

[tomParticipant]

Now Mavis look what you have gone and done? I leave you for a few days and you go and throw yourself in the Hospital :-0.

But seriously I am so sory to hear that you have done a decline, but trust me Girl you are one that will throw that rope up high and drag yourself back up to top form (well mm top form) again.

You are in the correct place and they will soon sort you out, as for your dongle well I have trouble with my dongle all the time Lol.

Good luck and I wish you a speedy recovery

Love and Hugs

Tom "Onwards and Upwards" xxxxx

[BADGERParticipant]

Hi Mavis

so sorry you are having such a bad time I managed quite well with cdt and my kidney function improved they thought it was all the extra steriods which helped the kidneys I do hope they can manage your pain when they do that you will be able to think more clearly. There are lots of new treatments down the line I read about something new most months mainly in america but where they lead we follow
God bless Mavis I will say a prayer for you I believe in the power of prayer as I know you do
Love Jo

[OutdoorsPaulParticipant]

Hi Mavis
My consultant told me last week after my PET scan that my left ribs and sternum were were weaker(lesions).My consultant is great and she knows that I ride a mountain bike (when meds allow me!) which inst often enough.She now tells me "stay off the bike till after SCT"
All these things can come out of the blue abit and change things,but we are all getting used to change i suspect.Listen to me me!! probably one of the youngest on site rattling on!!
My first treatment(RCD) failed but now on valcade and dates set for cyclo-priming and SCT harvest at Jimmy's in Leeds .
Love Paul

[mhnevillParticipant]

Dear Dai, Jean, Gill, Helen, Tom, Jo and Paul,

I knew, once I could get on line I would get some nice re-assuring feed-back from "them that know!" Getting over the shock of a;ll this bone damage and trying to put the threat of stress factors to the back of my mind. Like you Dai, I have problems with my shoulders, but they are keeping me in hospital till I have someting to lift me into a more upright position before I get up in the morning so it relieves the pressure. Being a heavy lady doesn't help.

Even when I didn't realise I had a problem, I did notice that the healthy types, like Paul, seemed to be able to push themselves some of the time. (Sorry it's off limits at the moment Paul, but at least you have good things to look forward to, like a wedding!)

I have started on the gentle exercises and am planning for the future. Considering I couldn't hold my weight on my feet at all last Thursday, I felt exaulted to walk to the Nurses' Station with a zimmer this morning.

Apart from not being able to sleep – always a problem with me and hospitals, and no doubt made worse by Dex, I think I'm doing OK. I feel so grateful to have a wonderful medical team here – I really couldn't ask for better, and such great support from Myeloma Chat line. I don't know what I'd do without it. I felt my arm was cut off when I coouldn't get on line.

And Dai, you make your plans for Spain – I'm sure in the end Janet will be thrilled when you both get there and it will be one for the memory box, and you will be surrounded by fantastic music. It's bound to be scary, but I have been reading Jet's posts and she is determined to "go where she wants to go, and has already started!" A real inspiration.

Take care all of you, you are special people.

Lots of love.

Mavis xxxxxxxxx

Mavis xxxxxx

[eveParticipant]

Hi Mavis
The things you do,to land your self in hospital,I hope they are waiting on you hand and foot,LOL only joking it,s a scary time for you,but the good news no compression on the spine,that must be a huge relief for you,you are in the best place as the main thing is to get you a good pain relieve,plus get you on your pins.

It amazes me about the bone damage as well,I am surprised that Dai is not on Zometa for his bones,Slim has Zometa and Adcal,because of extensive damage I worry that he will do to much ,so get accused of nagging,plus worry about going out,because he tends to try to do things when I am not there.!!!:-P

Some facts I was told about resuscitation ,is people who survive that and go home, only 13% survive,so I would agree on no resuscitation.But Mavis you are a long long way from that,plus you have your faith,which must be a comfort for you.

I think it is the damage to the bones this Myeloma does that is the problem I often think it is not taken into consideration by blood doctors.Eve

[ElizellenParticipant]

I was sorry to read you were back in hospital, Mavis.

I hope it won't be too long till you are able to move around more easily and that things are organised to help you manage at home soon.

Eliz
XX
X

[HelenParticipant]

Hi Mavis
How are you now? Have you got the pain under control yet?
Love Helen

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