[clearwellParticipant]

Hello,I have just been diagnosed with myeloma so I could do with any help I can get.
My Doctors are very good and have been completely honest with me.It started with mgus which I have had regular blood tests for over the last eight years.I then got crohns and I have had a lot of problems with that.
I am due to start chemo and then a stem cell transplant but I am due to have an operation for a blockage in my large bowel on the 5th March so that is holding up the chemo.
I am in limbo at the moment where as I just want to get on with it all.It is in my skull and at the moment thats the only place it is.

[TinaPParticipant]

Hi,
I have been newly diagnosed, and have been offered sct. But like you I am in limbo waiting for another 4 weeks after having shoulder surgery.
My MM is in my spine.
I wish you luck and will post on here with any developements.

[clearwellParticipant]

Hi Tina,do you know what treatment you will be having yet or haven't you got to that stage.
My Doctors are all talking to one another and I go for my pre op next week for the bowel op so I may hear something then.Are your Doctors good? How did they find you had it?This is all new to me so I'm interested.
I wish you luck to and really hope all goes well for you.

[tomParticipant]

Hi Geraldine

Sorry you had to join us but you have picked the right group, its great you have good Dr's thats a great help. Any Q's please ask away, which Hospital will you be under? as am sure we will have some one who is/at that hospital and help you through it.
Good Luck and keep us posted even if all you want to do is have a rant (and you will)

Love Tom "Onwards and Upwards" xxx

And a warm welcome to you Tina you also will find it a great site good luck with your shoulder op

Love Tom "Onwards and Upwards" xxx

[brochoParticipant]

Hi Tina and Geraldine welcome to the best support site there is!! Its good to hear you have faith in your doctors it makes such a difference Although you are probably feeling overwhemed at the thought of chemo and stem cell transplant at the moment it will gradually all make sense and become less scary Lots of people on here have had a stem cell transplant so ask any questions and you will get lots of replies Good luck with your op on the 5th Bridget

[clearwellParticipant]

Hi Tom and Bridget,I'm sure there will be lots of questions at some point and also lots of rants too.
I have been having regular blood tests for the mgus every 4 months and the paraprotein level stayed at 5 for about seven years and At Easter last year I started to get awful pains in my hip lower back down to my knees to the extent I couldn't walk any distance which got worse and worse.My blood Dr was on it straight away with numerous tests and I knew before Christmas but had to have a bone marrow to see how bad it was.Everything has happened quite quickly.
I am at Lincoln Hospital now and I can ask Dr Kandee anything and he explains it all and makes sure I understand.He draws me lots of pictures.
I was shocked that they found it in my head and imagined all sorts of things and they were not all good either.I got very upset in the middle of Tesco's cause it suddenly hit me I would lose my hair.The silly things we worry about eh.
I will be having the stem cell at Nottingham City Hospital which is about an hour and a bit away from here and I understand I will be in isolation for 4 weeks.I'm not going to like being away from my family and my dog for that amount of time but if it's got to be done..As long as I can take my lappy.
I probably will be bending your ears especially when it gets overwhelming which I'm sure it will at times.Thank you,Geri.

[tomParticipant]

Hi Geri

You just fire those Q away girl but let me tell you before you start need owt techie then i aint ur man need a lugh need ur spirits lifting then look no further cos am that man 😀 and trust me Geri I always get upset at Tesco's Give me Morrisons ar Asda 😎 a lot of us are on F/B if you use that???

Good Luck Geri

Love Tom "Onwards and Upwards" xxxx

[BADGERParticipant]

hi Tina and Geraldine
welcome to this site so sorry you have to join but this is the best place ever for help and support and a shoulder to cry on if you need one
Love Jo x

[clearwellParticipant]

Hi Tom,Well you did make me laugh with your quip about Tesco's.My poor husband whose name is Eric didn't know what to do or say cause I hadn't shown any emotion at all up until then.
It's difficult with the friends and family who burst into tears at the drop of a hat.I am still feeling very positive about it all even though I know there isn't a cure for this.I'm glad I found this web site.Yes I am on face book geriwebb and there is a picture of my little black and white dog with a red coat on look me up eh?
Can I ask what your reasons are for being on here if thats being to nosey tell me to mind my own buisness and I wont get offended.
I look forward to chatting to you love Geri xx

[clearwellParticipant]

Hi Jo,
Thank you for the welcome.It is nice to have somewhere to go where you can chat to people who know what your going through.
I found I was getting cross with people who were getting upset when I told them but thinking about it I would probably have done the same if roles had been reversed.
I am and will always be a very positive person and whatever comes my way I will fight it all the way and I want everyone to fight with me.
My friend said to me the other day how brave I am…..I'm scared stiff of the unknown but I will still fight.
Thanks for listening and I look forward to talking to you.
Love Geri xx

[BADGERParticipant]

Hi Geri

we all try to be brave on the surface but inside I dont always feel it, we have to fight this thing all the way never give in. I have had MM for three yearss went into hospital with pnuemonia and renal failure and as it turned out MM what a shock!! my kidneys are still only 20/25% so I chose not to have a Stem cell as it could of killed off my kidneys completely did want to risk it had four lots of CDT then thalidamide maint for a year still in good partial remission at the moment
Keep well:-)
love jo x

[mhnevillParticipant]

Hi Geri

Welcome to the Site. Sorry you have had to join us after evading it for four years. You have a lot to cope with with Crohns and your impending operation. You need all your positive thinking to help you thorugh. I know it does make a difference.

Sorry you are having all this bone involvement. Have you been on Zometa infusions? I can see that getting it in the head must feel frightening (I gather they call it "pepper pot"! By what I've read, it isn't as worringing as it sounds, but no doubt others who have had this problem will be able to help get this into perspective.

I fully understand you about hair loss. Fortunately I haven't had that problem yet, but dread it. However, I have realised from this site that lots of folk have very good shaped heads and their hair grows back well afterwards. Me, I've already thought I would get a wig, but I notice lots of folk don't bother. I gather they can be itchy. I'm a funny one – I think, if you think things through in advance they aren't so bad when they come. Do hope that's so for you or you will need to keep away from Tesco's!!!

Do hope you operation goes really well at the beginning of March. Keep in touch.

Best wishes.

Mavis x

[mhnevillParticipant]

Hi Tina

Welcome to you too! Sorry you've had to join us. Do hope your shoulder is healing well and you are getting movement back. Was this because of MM or because of arthritis? I have both!

I haven't had a SCT but there are lots of folk on here who can give you advice.

All best wishes.

Mavis x

[tomParticipant]

Hi Geri

Not a problem Girl ask away and you will have answeres 🙂

As for me (56 years young) was told in Jan 2009 that I have MM since then I have had CDT and a stem cell transplant in December 2009, and am still in remission and having NO treatment nowt zilch nothing, and that Geri Feels Great.
Anymore Q's feel free to ask

Love and Hugs

Tom "Onwards and Upwards" xxx
ps now to go find you on F/B 😀

[CarolBradley1Participant]

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

[Author]

Posts