Sorry to hear your news Bridget – boy you have been through the mill and you are always so brave and bright.
Had my MRI last week as am having a lot of pain and weakness in one leg but they say it´s usual wear and tear and slipped disc damage. I am hoping that it leads to nothing else but am just relieved not to have heard anything worse at this stage (my lovely specialst does sometimes miss unpleasant things out if there is nothing we can do about them and tht suits me just fine!
Love and cyber hugs to you – you cheer me up every time I read your posts.
Love Carol xxx
Hi Dave
Sorry can´t help with your specific question but did just want to welcome you to the site as we haven´t met here before.
Sorry that your pp is on the rise but over the years prior to treatment (I have had one SCT) my pp fluctuated quite dramatically usually when I was under stress and as soon as things settled down at work etc. so did the pp.
Anyway, I do hope someone has the answers for you and in the meantime best wishes.
Carol
Hi All
Hope this finds you all as well as you can be.
Strange how chemo changes how our hair is. I ought to update my photo as this one is the "before" and it has now come back curly which makes me look as if I have had a perm if there is any damp at all in the air!
Anyway, I might keep this to encourage me not to chop it off when I am fed up with it.
Love Carol xxxx
ps. I am now paying for riding my little horse Cuco out for a whole hour the day before yesterday as have been in constant sickening pain since. However, no dobt by next week I shall have recovered, forgotten how bad it was and climb aboard again – I never learn – but if we stop doing what we get up in the morning for it´s a bit depressing.
Hi Vic
Welcome – glad to hear from you but sad that it is under these circumstances. I too have a problem with discs and they are monitoring to I will be interested to hear anything too about this procedure.At the minute I am managing with Tramadol with the occasional top up with a little bit of oramorph but even still I have pain.
Best wishes with everything.
Love Carolxxx
Hi Terry
I was on the machine for two days and with the needles in each arm and having been asked to lie flat ant to try not to move around and disturb things I couldn´t do much other than snooze and chat to lovely hubby in between.
The only difficulty I had was a lack of calcium but they gave me an injection and a couple of glasses of milk which did the trick.
On the first day I said I wouldn´t bother with the local anesthetic in my arms but the machine kept stopping as my vein didn´t like the needle being left in for so long. The second day I had the local and it went a lot easier so wish I hadn´t been so brave on the first day.
Hope everything goes well – we shall all be thinking of you. Let us know when you are going in for your SCT if you are able so I can include you in my prayers.
Love Carol xxxx
Sorry to hear your unwell David. I was told that Kiwi fruit has lots of things in it that helps – anyway I eat one every day and since I started have escaped the usual winter colds etc.
Hope you feel better soon.
Love Carolxxxx
Lovely photo!
Love Carolxxx
Hi Tina
Glad your going on the trial as you will be monitored really well and the medications used seem to be having a good impact on the MM for most people.
Regarding the side effects of the treatment and SCT – well, like you I was really worried about the hair loss all the time up until the SCT – my poor husband spent a BOMB on having a wig matched exactly to my own hair of the time (in the photo). The truth is that having come through the SCT successfully I wore the wig exactly four times as it irritated me (nothing to do with the quality just we had horses who kept nuzzling it so I had to keep changing to a hat which was a fiddle). Anyway, the truth is that I was so glad to be home again and on the mend the last thing I was bothered about was the hair thing. You could be different to me but also, I was so tired the last thing on my mind was that – anyway the turbans were really much more cosey during the cold months and looked quite smart until it grew back. The only wig I did get a lot of use out of in the early months was a very short cheap thing I bought in the local market which was far more comfortable than the really expensive one or the national health one! In short, worry about looking after yourself and trying to remember to face things one step at a time instead of looking too far ahead. It helped me to practice going to a "nice" place inside my head – memories of happy times, my lovely supportive husband, children when small, a good mum and dad, riding my horses and sailing our boat. In fact, it was a bit like playing a little film back in my head of happy memories. I got quite good at this and whilst I was in isolation after the SCT I would decide which "film" to watch when I had a few quite hours to fill until visiting time care around.
You take good care of yourself in the lead up to the SCT because the fitter you go in the fitter you will come out! Even if you can only do gentle walks on the flat it does help a bit. You sound really brave and positive and I know your going to come out the other side well but don´t be too disappointed if there are days when you wonder if you will ever have any energy againa! – Don´t worry, you will. As I write I am on holiday, sat at our little farm here in Spain planning to ride a horse today and varnish the front door if I have enough energy left and planning what I would like to achieve in the garden this spring when I get home. Hope that gives you some reasurance that the SCT will be worth all the preparation and side effects.
Ask anything you like – that´s what this site is for. Also, I found it really helped to talk to people who really understood my worries, fears amd frustrations – I could let off steam to them and it wasnt personal – I always worried to say too much to family and friends in case I worried and upset them – here people are keen to help but not so personally involved as they don´t know you that well.
Sorry if I have rambled on – thinking of you and wishing you the best with your shoulder operation. When you feel up to it let us know how you are will you?
Love Carol xxx
Hi and welcome
I think everyone has said it all at present but just wanted to add my very best wishes to you.
This is such a frightening time and my heart goes out to you having been through the mill myself since 2005. I have had the chimo and SCT and at the moment am enjoying a period of relative good health so hang in there! There is so much on the internet I know but please try and focus on the positive – there is so much work going on to fight this rotten illness now and more and more people are keeping well for years longer than could ever have been thought a few years ago. At least on this site there are some lovely, genuine people who are prepared to listen and really do understand what your going through – that support can be a real help on the dark days.
Very best wishes
love Carol xxx
Hi Tina
So sorry that we are meeting because of your bad news you must be reeling at the moment. At least you have come to the right place for some support – ask anything at all as anything that worries you is important.
I had my SCT in Feb of 2011 and although my recovery has been slower than I would have liked I am sure that is because I am a bit older than some (57) and like to ride my horses and lead the outdoor life so notice it when I´m just not up to that.
Overall the SCT has been a great success and to date has knocked the MM for six so I am enjoying life every day as best I can. Hope it encourages you to know that today I rode one of our horses for a short while – something that I never thought I would be able to do again.
Hope you have a good support team and that you are feeling a bit better soon.
If it helps I was on the Myeloma 11 trial and found that I was monitored a lot more closely than those that were not on it which meant that any problems seemed to be picked up more quickly although I did have to have more blood tests etc. Any specific quiestions please do ask.
Thinking of you.
Love Carol xx
Hello Kerry
Sorry you have both had to join us and that your having such a rotten time at present. I think everyone has said just about everything – thats the big thing about this site, having lovely people share their knowledge and practical advice is such a support.
Hope that the pain is now getting sorted out and that things are a bit calmer soon.
Love Carol xx
Hi Bridgett and all those others kind enough to reply.
Just to let you know that we have taken the specialist at her word when she said to enjoy what time I had left (we have decided that´s 30 years in my case) and have beggered off to Spain for a holiday. Sunshine is great and it´s a real treat just to sit out and rest (although it´s rather windy but at least dry and sunny).
Wish you could all join me but come over in thought anyway, cheers to all.
Love and prayers to those going through especially hard treatments at present and their gallant supporters.
Carol xxx
Hi Phil
Do hope the reduced dose is good for you – I asked on Mnday if they would put me back on a maintenance with a reduced dose but my specialist said that I was "passed that stage now" and says I should just enjoy what level of fitness I have now. Anyway hope all goes well with you and yes, I´m sure that the outside life is helping me feel a bit more awake – but I still snooze a lot! Keep smiling.
Take care
Carol xx
Hi Helen
Had my transplant in February 2011 and we seem to have had a similar recovery history. I don´t know why my specialist thought I was too "fragile" to carry on with Revlimid although I had lost over 10% of my body weight and generally felt rotten and miserable – also tingling feet etc. My dose was 20mg which I felt was too high but we have to do what they tell us don´t we? Also, the alerts about secondary tumour incidence being higher in those taking Revlimid was beginning to worry her I think as I do have a problem on my back that hasn´t ever been explained to date just a vague "oh it´s very bad wear and tear and disc rupture". I suspect they were worried something else was developing and so decided to stop but I could be very wrong.
Anyway, I am now packing to go off to sunny Spain to rest in the sun and try and build myself back up again and I am SO excited!Think I am just really ready for a few weeks without appointments and treatments and all that goes with it!
Take very good care of yourself and let me know how you get on – fingers crossed for you.
Love Carol xxxx
Hi Amelie and Helan
Yes, I am in the UK Amelie and as Helen explained I was on a drugs trial and so was provided with Revlimid. What treatment are you on Amelie?
To be honest I´m not really convinced that the Revlimid was to blame but I just never seemsd to "bounce back" too well after the SCT but I do remember that I was just beginning to think Great feeling just a bit better! and then was started on the Revlimid (around the 100 days post SCT I believe) and pretty quickly I was feely back to feeling under par and then worse and worse with the usual nerve damage and increased bone pain. I still tire very easily and generally speaking try to get out and about in the morning but then am resigned that the rest of the day is pretty much going to be on the sofa resting/sleeping.
Helen have you made the decision not to go for the SCT or is that still to come if it´s appropriate for you?
Well, I´m still here and managing to look after my horses and do most of the physical work unaided so it´s not all bad. Off to Spain for a few weeks to get out of the winter weather (lucky old me!) which I´m sure will do me the world of good so I am counting my blessings and feeling positive.
Take good care of yourselves and many thanks for the reply, good to talk to you.
Love Carol xxxxx
