Hello Michael, my name is Jacqui.

Like Josephine I had initial treatment with oral CDT and I was very fortunate to achieve a complete response in 3 months. I went on to have STC and I am now on a clinical trial with weekly treatment with velcade.

It was explained to me that it is usually used for patients who have already had at least one…[Read more]

Hi Ali & Vicki. I am now 4 months post SCT and no one has mentioned immunisations. My next appointment is next week so I will ask then. My holiday aspirations are a little closer to home and I am really hoping to have a holiday to the Greek island with extended family next summer. Missed out last year so fingers crossed all will be well for next…[Read more]

Hi Joanne. I am sorry that your dad is going through a tough time and I can imagine it is very difficult for you.

I started on Velcade 3 weeks ago so I am no expert but just wanted to let you know that so far I am feeling very good. I am working 3 days a week and also running around like a headless chicken with my daughters.

I have it once…[Read more]

Thank you Dai & Helen
I don't really know why I went onto that thinking. Probably because I am curious as to why MM was not historically common in women and especially not young women yet it seems to be quite increasingly evident lately.
Anyway, I think I need to stop quizzing and just accept it, but I've always have an enquiring mind, even as a…[Read more]

Hi Michele

Thank you for your reply.

Yes, same here. I will not let my children drink diet drinks and avoid anything that says "no added sugar" as I have found this usually means aspartame is present. Before you became aware of it's toxicity did you buy products with aspartame?

Looking at your profile you seem to be very similar to me. I…[Read more]

Hello Joanne
I had my stem cell transplant in May of this year, just under 4 months ago. Like your dad I had previously been treated with chemo, steroid and Thalidomide. The worst part of that for me was the steroids but apart from that it wasnt too troublesome, although looking back I realise I was far from the person that I was prior to the…[Read more]

Thanks Tom

Aim is to see if weekly Velcade given within 4 mnths of SCT extends remission. Thing is I can't really see how they will know but hey ho I'll give it a try.

Jacqui

Hi Paul

Good Luck with the Allo. When you say you have been offered clinical trial for that – do you mean the same one as me or for your allo?

Getting my first dose on Thursday. Will keep the updates on "TREATMENT" part of the forum.

Jacqui

04-09-2012 at 6:44 PM
Hi Tracey

I have posted a general reply to my original post but just wanted to say that I am also being treated at The Royal Free.

Like you, I tend to look on here according to my moods. Not because I don't care about others, but because for me I find it easier to keep my spirits high if I do not focus too much on my…[Read more]

Thank you all so much for replying. I finally got to the bottom of my questions and basically it is something to do with a chromosome abnormality known as 4:14 trans-location ????

I don't really understand what that means but just understand that is the "aggressive" bit that my consultant is talking about.

After over 2 weeks of swinging…[Read more]

Hello Catlyn

My name is Jacqui and I am almost 4 months post SCT.

A bit of history :- I was diagnosed in November 2011 aged 51.

Following surgery to fix a lesion in my right femur which was picked up on diagnosis of MM, I started on CTD. 3 cycles of treatment resulted in 0 detectable paraprotein. I then had one more cycle until end of…[Read more]

Hello Maxine. My name is Jacqui. I am 52 and was diagnosed with MM in Nov 2011. I live in London and I am under the Royal Free Hospital. I don't post on here as often as I would like to because I always seem to be so busy with my 2 daughters (aged 19 & 12), but whenever I do people are always kind enough to reply so I am sure you will get plenty…[Read more]

Hello Angela

I am Jacqui, aged 52 and diagnosed with MM in November 2011. We are very similar in our situation as on diagnosis I presented with a fractured hip. I immediately had an operation where a pin was put in my right leg to support the hip. All quite straight forward but I appreciate is was not a hip replacement so not quite the same as…[Read more]

Good Morning All. Just a quick update to let u all know that I came home.on Saturday following my SCT. So how was it for me? Well the results.show that I am in complete remisssion with no trace of paraprotein 🙂
I have to be honest and say it was certainly not plain sailing but i dont want to dwell on that because it is behind be now and…[Read more]

Dear Antionette. My heartfelt thoughts to you especially in relation to you having such young children. Although i am older than you and my children are older than yours, i truly understand how you must be feeling right now. You know it does sometimes seem so unfair but the raw fact is that we cant change what we have. The only way I can deal with…[Read more]

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…[Read more]

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

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