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 line of prior treatment here in the UK, but I know in other countries it is used as first line treatment and also maintenance treatment.
I have just had my 6th "shot" which is given as a subcutaneous injection and so far I have been fine. Working and getting about pretty much as usual. Most difficult part is the frequent trips to Hospital.
I hope this has helped with your question.
Jacqui
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 summer. Ali, glad your mum is doing well. If I remeber correctly she is a little behind me with her treatment..Vicki, I really hope all will soon be happening for Colin. Xx
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 a week by subcutaneous injection which i believe is favourable as less likely to have peripheral neuropathy.
I have no other treatment with it as I am taking it as part of a clinical trial so not sure how it will compare with your dads treatment.
I hope he will soon start to improve and start treatment.
Best wishes.
Jacqui xx
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 child. My dear mother always said I should have been an investigator!!!
Jacqui xx
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 was diagnosed in Nov 2011 at the age of 51. also had CTD and STC was in May this year. Where are you being treated?
I have also been able to remain positive from the outset, but there are times when I worry about the impact of this on my children and I can get quite tearful at these times.
Jacqui
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 treatment.
For me the transplant was as I had been told to expect it to be, which was very challenging. However, once I had "turned the corner" which seemed to happen overnight, i just continued to get better ~ slowly but surely.
On Monday of this week I returned to work and it was the best feeling I have had since being diagnosed in November last year.
So my opinion is that although stc is a tough journey the rewards make it worthwhile.
My children worry about me and i hate it that they are so young and have this burden. I am sure your dad will also be worrying about you. Its just what we do when we love someone.
I hope your dad has a good response to the preparation and the transplant itself.
Best wishes
Jacqui
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 M&M world as I call it.
Do you love locally?
Jacqui
xx
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 yes/no I finally decided to sign up for the trial but I am more thinking of it as another line of treatment.
Was at the hospital today (Royal Free in London) and had a full skeletal survey, blood tests and the dreaded (by me) Bone marrow biopsy. All went well and thanks to sedation the biopsy was a walk in the park 🙂
As i type this message I am feeling so good and enjoying my drug free times until 1st dose of velcade on Thursday.
I will keep everyone up to date with how the trial goes as I have not seen any other posts in relation to this.
xxx
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 April and then went on to have my SCT on May 18th.
Ok, so the SCT was challenging but if you know what to expect then you can reason with it a little and take comfort in the knowledge that the scary bits are normal, and most importantly, they will go. As you are the carer I would say to you that I could not have managed if it wasn't for my ever so patient and caring husband. Even though a lot of the time i didn't have the energy to look at him let alone talk, I needed him with me and he sat there for hours. Poor thing must have been so bored.
Now less than 4 months on it seems like a distant dream I am still in CR with no detectable PP and I started back at work yesterday (albeit on reduced hours).I feel really good and feel as though I have my own body back without any gremlins from drugs. Just a few aches and pains but nothing that is too troublesome at all. In fact I am not even taking any pain relief.
I hope this helps in some way to get to grips with what to expect but please feel free to ask more detailed questions if you feel the need.
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 of support. I have had 1st line of treatment (CTD) followed by a stem cell transplant in May this year. I am currently in remission and about to start a clinical trial so if any of this becomes relevant please feel free to ask about it. As others will tell you everyones MM affects them in different ways as does the treatment. All the same its reassuring to know there is always someone to bounce things off.when you need to. As a mother my main concerns are for my children and I am guessing your sister will be feeling the same. It is good that you are there for your sister looking for information as I am sure she will have many questions that take time to find the answers to. Wishing you well in all of this. Jacqui. X
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 you.
My treatment so far has been CTD for 4 months at which time I had achieved a complete remission. That was at the end of April and then on 18th May I had my Stem Cell Transplant. Ok, so it was pretty tough at times, but I had been told that and was glad that someone was honest with me, as when I was at my lowest I knew it was normal and that things would improve.
I am now pretty much over it and getting on with life almost as normal but get tired at the end of days that are busy. SCT already seems like a long time ago and I am returning to work on 3rd September so that's all good.
Jacqui
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 acheived the desired results. I am so happy to be home although I still have very low energy levels. If anyone wants to ask any questions about my SCT I will be happy to answer but I will be very honest when I do. Everyone's journey is different I know. But the outcome has to be worth everything that has gone before. The sun is shining and life feels good. Who would believe so much could happen in just 6 months. Thanks for all of your good wishes and good luck to all who are in the early stages of their journey. Lots of love. Jacqui xx
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 this is to try not to think too much about the bad side of the coin. There is light at the end of the tunnel and that is what i am trying to focus on. When i give in and cry i absolutely sob and if i dare to think of my children at that time it becomes hopeless. BUT then i feel like i can cope again. It is very intersting that u suffered with vertigo with your pregnancy as that is exactly what happened to me and i still suffer with vertigo to this day but nothing that troubles me much to be honest. I am in hospital as i type this message having my stem cell transplant. I came in on Tuesday and had Melphalan on Wednesday and my cells returned on Friday. None of which caused me any pain. So sorry have to sign off as my daughter is calling. Cant work out how to do 2 things at once on this phone. Xxx
