[jackspratParticipant]

Hi Vicki & Colin
My treatment so far has been ok. My main problems came from Dexamethasone with tremors and general weakness being at the worst 2 days after stopping each cycle. I have tried to be positive about this as there is nothing I can do to change my affair with Myeloma. On just a few occasions it has been hard and I have sobbed but i always manage to pick myself up and dust it off.

The team at the hospital said it is amazing how quickly I responded to the initial treatment so I am praying it continues in that way.

I had my Hickman Line put in today which was no problem really. I have now been give the bitter sweet dose of Melphalan and I guess it is doing its work. Just as a point of interest, I read about a mouthwash called Caphosol and bought some for myself at a price. I also managed to get some on prescription from my GP. Every member of staff, who has seen that I have it, has said how good it is at making the symptoms of mucositis less severe.

Not sure if anyone else has any advice on this but thought it was worth mentioning.

Anyway I wish you both all the best on your own journey with Myeloma and to a SCT.

Jacqui

[jackspratParticipant]

Thanyou Dai for your positive and understanding message. I have just posted a brief update below. Jacqui

[jackspratParticipant]

Hello again. Just a quick update. Now in hospital waiting to have my hickman line put in and then high dose melphalan. Mixed emotions as children left in tears yesterday but doing my best to keep thinking positive thoughts. Jacqui 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

[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

[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

[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

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