[jomickParticipant]

hello everyone my name is Michael and my wife Josephine was diagnosed with myeloma in Feb. 2010. I am new to myeloma and computers so if anyone reads this can you let me know. not sure if I am doing things right.
Jo had a year on oral chemo but she never went into full remission, on our last visit to the hospital the consultant admitted it was out of control.
Jo is starting a course of velcade today and we understand it involves a small injection into the tummy. the consultant praised velcade and gave us the impression it was the best thing since sliced bread. If it is so good why is it not used in the begining instead of oral? hope someone can answer this question. regards to all affected by myeloma.

[JoanneKParticipant]

Hi Michael.. Sorry to hear your wife is suffering with myeloma and I hope you get lots of help from this forum. My dad is in a similar situation to Josephine.. His first course of treatment hasn't worked so we are back to the beginning and he is going to start velcade! Unfortunately he is suffering with infection after infection at the moment and docs cannot get his treatment started until he is fitter.

I can't help with your question about why it isn't used initially but I just wanted to say hello as I have found these forums extremely helpful and supportive. I'm sure someone on here will be able to give you advice.

All the very best to your wife and take care of each other.

Joanne xx

[jillsParticipant]

Hi Michael,

Sorry to hear about your wife. My understanding is that Velcade is licenced in the UK for use with relapsed myeloma rather than as a first line treatment – although I am no expert and others I am sure know much more. It is a very expensive treatment (around £7k per cycle apparently) so I suspect part of the reason is also financial as I am sure oral CTD is much cheaper.
My Mum (age 83) had oral CTD first and although it reduced her levels of myeloma to a plateau they never got to zero and full remission (which I am told is fairly unusual). She has just finished four cycles of Velcade injections and again this has reduced the myeloma to a plateau level – but the numbers are still not zero. The aim seems to be to keep things under control so that she is free of symptoms. She coped fine with the Velcade with little in the way of side effects, the worst part was the weekly trips to the hospital for the treatment.

All the best,
Jill

[jomickParticipant]

Hello Jill many thanks for your reply, I now know Iam doing the right thing on the computer. Ihope your Dad's treatment starts soon and I wish him all the best with it good luck to you both Michaelxx

[tomParticipant]

Hi Michael and Jo

A warm welcome to the forum and am sure you didnt want to join 🙁 but you will find great people in here and will answer any Q you may have and you will have many, make yourself at home and dont worry about making a mistake it will all fall into place soon.

As for the Velcade am sure its not used as a "Front Line Treatment" yet so you have to have failed one before this one is given.

Good Luck to you Both in your road to remission, I and many more did it 😎

Tom "Onwards and Upwards"

[BADGERParticipant]

Hi Michael
sorry to hear about Jo same name as me I had cdt when first daignosed in jan 2009 could not have SCT due to renal failure it actually worked for me I was in full remission until the beginning of this year my PP's are still very low but my light chains are rising so due to my damaged kidneys I will have to start Velcade sooner than most people I think they now use velcade as a first line treatment but a couple of years ago that wasnt a licence for it
I hope Jo does well on it
Regards Jo x

[jomickParticipant]

Hello Joanne
many thanks to you for your reply its been quite a reassuring day to know that people like yourself can find the time to give others the support they are seeking good luck to you and thank you for taking the trouble to reply Michael

[jomickParticipant]

Iwould like to thank you to everyone who has replied to my post. We have just got back from the hospital and I will reply to every one asap.
many thanks Jo & Michael

[lorraineyParticipant]

Hi Michael,

I hope Josephine is bearing up. I live in France and had Velcade as first line treatment back in February 2009, they had just finished a trial for it and because of the results they decided to use it as first line treatment.
I have everything crossed for good results for Josephine.

Take care

love n hugs Lorraine xxx

[jackspratParticipant]

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

[Author]

Posts