Dear Jacqui
Welcome to the Site. Sorry you have had to join us. It is good that you have responded so well to treatment so far. This bodes well for your SCT later.
All best wishes.
Mavis
Dear Sally
Welcome to this Web Site. I am sure you will find it a great help especially as you are naturally feeling down at the moment. I'm so sorry you have had this relapse. Of course you would have hoped for a longer remission, but it is good that you are responding well to Velcade. Think, three years ago you wouldn't have automatically been able to have it because of funding, so that's one good thing in your favour.
I have only just started CDT but know there are lots of folk on site who have had very good response to Velcade.
All best wishes.
Mavis
Welcome CharlieLouise
So sorry your Nan has been diagnosed with MM and that you are having to come to terms with it all. With a young family you are going to have a busy time!
All best wishes.
Mavis
Hi Ann
So sorry that your husband has had to join us, but I know you will find lots of support on this site.
As you will be gathering MM is a very varied disease. It could well be that your husband may find he doesn't need to move to treatment yet, or perhaps just bone strengthening infusions. Sometimes it is just "wait and see" at the beginning.
Best wishes to you both as you face this unwanted challenge.
Mavis
Hi Kay
Well done for taking on the challenge of the return to work.
I worry about your continuted pain. Have you asked to see the Pallitative Care Team? I know it sounds drastic when we want to think of ourselves as as normal as we can be, but they will treat us because we do have a life threatening illness. I have found it really helpful to have someone who is taking an overview of all my pains. But maybe you think your Gp is doing the best they can.
Do put yourself first in all this. I do very much understand your desire to return to normality and kick MM into the background. I am wanting to do this myself. I was devastated when one of the nurses came on Thursday and said "the team have met and we don't think you will make any more progress to looking after yourself!" It was very insensative and not true!! They have revised what they said BUT you do wonder. They just wanted to write me off to carers several times a day. One thing, it makles me want to show them and I am making progress!!! They don't know that I am aiming to be back on the church rota as soon as possible!
Love to you.
Mavis xxxx
Hi Tina
So glad you are last moving onto the Trial. All best wishes for that. I hope the drugs well and truly kick the MM into touch. Hope your shoulder is functioning well now and pain is bearable.
Love Mavis xxx
Hi Tom
Please could you send Bridget my good wishes and love too.
Dear Tom and others,
I have joined Face Book but am frightened to use it because of security worries. Have you any words of wisdom? Are there ways of using it without exposing yourself to too much risk?? Folk are always asking to be my "friend" and at the moment I just don't respond.
Any comments would be appreciated. You will appreciate I am feeling much better and getting a bit more mobile each day.
Love to all.
Mavis xxx
Mavis xxx
Belated welcome from me too Tony.
Sorry you have had to join us, but at least you got diagnosed reasonably early which does help.
Glad you've been admitted to the Trial. Do hope it works really well for you. Is it with a view to have a Stem Cell Transplant later? Or maybe they are leaving that because of your age.
I am 67yrs and have just started on CDT. I have been 17 months without treatment, a joint choice with my Consultant. This was following a back operation to remove a tumour. This was my way into MM. As folk have said, everyone's journey is different, but I have found this site a God's send.
Very best wishes as you work to kick this dratted MM into touch.
Mavis
Hi All
Now settled back at home. Not without its problems but I am getting lots of help, if very fragmented. I am now getting more mobile, if somewhat slowly. The pain is much better with the oxycontin.
I started on my second round of chemo on Wednesday, It would have been Monday if the ambulance had been booked! They have doubled the dose of Thalidomide, which I'm told is normal practice. Not too happy about this, because of the danger of side effects, but suppose need to give it a go.
Am keeping positive and still keeping our holiday cottage booking for August open at the moment.
I find the worst part is life being dominated at the moment by the miriad visits of the professionals of one sort or another. All neededm, but very tiring.
Love to everyone and thank you for all your thoughts and prayers.
Mavis xxxxx
Hi Ian
I have had swollen ankles while on my first dose of CDT. Partly, because I haven't been moving much. I have found if I work my feet, while sitting down, they aren't as bad. The consultant says nothing to worry about and don't need water pills at the moment. Must say, they are very unsightly though!
Hope things go well with you.
Best wishes.
Mavis
Hi Jo
Tahnk yu for your support and prayers over the past three weeks.
Glad there was something to make the hospital visit more pleasant. It does make a difference doesn't it. We spend so long in these places. Great that some folk are able to raise money to support these intitiatives.
My daugher has just signed on to do the "Race for life" for Cancer Research UK. I feel very proud of her because it's not really her thing.
Now I am home, on a wing and a prayer, there are some questions I wanted to ask you about your CDT as I am just finishing the first 21 day cycle. It was quite good to get that over while I was in hospital. I go back on Monday to check all is well before I proceed to round two!
How many months of CDT did you have and did it take you into remission or did you have to have ongoing drug involvement? What happens/happened next?
Apart from swollen ankle I have not had any untoward side effects. The biggest problem is trying to get mobile again. At night they put me on my bed and I can't move position till morning.! Still, I am here to tell the tle and so much better than when I went into hospital. I think the shock to Gordon and i has been, just how much of an invalid I am. I have been catherterised, which is a great help, but yet another ill preson's thing to deal with at moment. At least, once I was home, I was, at last able to get all the help I need short term put into place. I don't know why it couldn't have been done in advance and saved a lot of worry. It was a real answer to prayer that the lass at Bradford Social Services, who took my SOS call, was willing to pull out all the stops for me.
Greetings to everyone and thanks for your support. It is good to be back with my computer by my side.
Much love.
Mavis xx
Hi Helen
So sorry you have this to deal with on top of everything else. Thing to remember on all these interviews/questionnaires is, you must answer as to how you feel on "bad" days not "good". You do yourself no favours by being brave.
After all, what's a OH interview upto ALL you hve been through recently.
I would have thought the best you can do at the moment is to get them to delay any decision about return to work – unless, of course, they are working towards enhanced severance on sick grounds, and that's what you want. As everyone has said, they have a duty to work in your interests as well as their own.
All best wishes.
Love Mavis xx
Hi Susie
So sorry you have had to join our "merry" band! We all know what it is to be waiting for results and dreading the outcome. I do hope that you have some time without having to procede to chemo. I was very fortunate and had 17 months between my operation to remove a tumour and progression. Thing was though, it did come as a shock when I did have to start t three weeks ago.
The thing I have discovered about this disease is, you seem to get the strength to go the next bit of the journey and probably isn't good to try and look too far ahead. Folk on this site are a great bunch to help with that.
We will all be holding our breathe for you on Tuesday. It is good that you are taking your sister along. I find it helps to write down the questions I want to ask the consultant. You may find getting a Myeloma UK Treatment Diary helpful. Free via the phone line. I find it helpful to keep a record of my blood results.
All very best wishes.
Mavis
Welcopme Jorge
Sorry you are having to cope with the devastating diagnosis of MM on your own. I am sure you will find this site very supportive as you settle back in Ireland.
All good wishes.
Mavis
Hi Dai
Sorry that the pain in your shoulder is still as bad. Interestingly, I have had a lot ofpain in my left shoulder and can't take any weight on it. They have provided me with a riser to get in and poutof bed with. Mt Consultant did have an xray done on mine and it turns out it isn't broken, but is probably arthritic. If yours is, maybe it expalins why the paracetamol is helping. I have been put on oxecontin and it has helped a bit.
I can't see why you aren't on Zometa by now as it is in the NICE guidelines. Do press them as they say it also has an anti myeloma effect as well as being good for the bones. The down side is you have to go to the hospital for the infusions, but at least they don't take too long.
Keep hanging on to thoughts of that holiday! Have you thoguht of having any adaptations to your car? I think I am going to have to get some help with steering.
Take care. Love.
Mavis x
Do hope you get some good news on Tuesday.
