[jackspratParticipant]

Hi Everyone 🙂 I am new to the forum and i am afraid I don't really have anything specific to say at the moment but just wanted to introduce myself. I am a 52 year old mother of 2 beautiful girls and was diagnosed with MM in November 2011.

[AliParticipant]

Hi, im Alison.

Im new to the forum too. My Mum was diagnosed Nov last year also. She is now 58.

Im sure you will find a friendly welcome, support and advice here.

Do you mind if I ask what treatment you are on?

Take care

Alison x

[BADGERParticipant]

hi welcome to the forum not something you would want to do but welcome have you started chemo yet or are they just monitoring you. You will get so much help and support here and a solution to a lot of your questions dont forget Myeloma uk help line they are so good and will give you good advice
Keep well:-)
Regards Jo x

[tomParticipant]

Hi Jacqui

A warm welcome, I know we all will understand that its all new to you and you have gone through some of the post on here? then am sure you know we have great Folk on here that have and are going through treatment and am sure that what ever treatment you get/having some of us will have had it or be just in front of you, so when your ready ask away.

Love
Tom "Onwards and Upwards" xxx

[Gill20Participant]

Hi Jacqui,

Welcome to the site, as others have said you will get some very good advice from people on this site and whatever problem you have they will always be there to help and support you.

Gill x

[DebsParticipant]

Welcome Jacqui

Love
Debs x

[jackspratParticipant]

Many thanks to all of you for the warm welcome. I am afraid all the terminology is still quite new to me but I will attempt to tell you where I am with my journey.
I was diagnosed with stage 2 IgA MM and multiple lytic lesions. I had been limping around all summer having been told I had mild osteo-arthritis. In fact, I had a fractured hip which was picked up on the skeletal survey on the day of diagnosis. On my report it states that my IgA paraprotein was 34 +3g.
After having a prophylactic nail inserted in my right leg I then began my treatment which was Cyclophosphamide, Thalidomide and Dexamethasone on a rolling 28 day cycle. At the end of cycle 1 my paraprotein was 19, cycle 2 was 5 and cycle 3 was 0. Continued with 1 more cycle and end of April 2012 stopped medication and told there was no detectable level.

I am now booked for Autologous stem cell transplant on 18th May. I have had all the preparatory tests and my cells were harvested on 16th April. My children are finding it very hard and my husband is coasting along not really sharing his feelings, but I remain positive so far.

Sorry if I have got the wording wrong but hopefully you can understand what i am trying to say.

Jacqui

[jackspratParticipant]

Hi Alison. Not entirely sure how the replying system works but hopefully you can see my updated news which gives my treatment regimen. Please ask if you want more details such as dosage etc. Has your mum started treatment yet?

Jacqui

[mhnevillParticipant]

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

[jackspratParticipant]

Hi again. I can see i will have to get used to understanding how the threads work. I have now managed to find your original post and i see that your mum has been on treatment so I apologise for my question about it.
Jacqui x

[HelenParticipant]

Hello Jacqui
Good luck with the transplant, It's over 8 months since I had mine and I'm off to New Zealand next week – something I thought would never be possible a year ago.
Love Helen

[sandydeliParticipant]

Hi there just wanted to say hello and glad You'v found this site it's a god send . Sandra.

[AliParticipant]

Hi Jacqui,
I hope you are feeling well, and pleased you are feeling positive about your SCT. Mums on the Myeloma x1 trial and is has just finished her 5th cycle of Rev,Dex and Cyclophosphamide. She too has responded well to treatment so far. You are abit further ahead in your treatment. I see you're in for your SCT the day after Mum has her first consultation. I wonder how long it will be before they do the harvesting? Did you cope ok?.

I am not surprised your children are finding it hard, I know I am. We all know what Mums are like (I am 1 myself) we always say we are fine dont we? when asked how we are doing and its hard to know exactly how "The Mum" is feeling, and of course we cannot possibly know how you are feeling, so we try to second guess if that makes sense?. I worry so much about my Mum as im sure your children worry about you. How old are your kids? Im 37. Mum just says "whatever it takes I will do". Are you planning to do something nice before SCT?, my Dad is hoping to take Mum away before hers if its at all possible – I think she deserves it!

Sorry if I have "gone on abit"!

Take care Ali x

[jackspratParticipant]

Hi Ali
My harvesting was a breeze. No problems at all and they got everything they needed and more 🙂

My Children are just 18 and 12. They both started their own new journeys in September last year, just before my diagnosis in November. The eldest started university and the youngest started secondary school.

I was immediately admitted into hospital at my haematology referral in November and remained there for 3 weeks. This was totally unexpected and it's been quite tough on them but I have always made sure I am as positive as possible with them.

I won't be going anywhere special before my SCT – just spending lots of time with the girls and my husband, as there are so many things I want to sort out before I go in. Also my eldest daughter has exams right up to the day I am being admitted (15th May) and she needs to pass them all in order to move up to the next year.

Hope all goes well at your mum's appointment.

Jacqui X

[AliParticipant]

Morning Jacqui,

You must be very proud of your daughters! Like you say they have started their own new journey, I am sure they have friends they can share the load with and with your eldest having exams before you go in hospital, she will have plenty to concentrate on – other than this awful Myeloma. I think positive is the only way to be!

I am relieved you found the harvesting a breeze – were you there just for the day? Did you feel any ill effects afterwards?.

I hope you breeze through SCT as you did the harvesting and it will be worth it for the remission at the end of it all. Keep in touch Ali x

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