[jackspratParticipant]

Hi everyone. I haven't posted for a while as been quite busy getting on with life with the children before they go back to school and university. I am sorry to seem to be only posting now that I need something and I hope you all don't mind.

As you know from my previous posts I had my SCT on 18th May. Now recovered and getting ready to return to work on 3rd September(albeit on reduced hours initially.) As I work in a school, I have had the luxury of having all summer off anyway.

I wanted to put a couple of questions up if anyone has any helpful info. I have been "invited" to take part in a clinical trial known as "Bortezomib (velcade)consolidation trial" in which the aim is to find out if giving weekly velcade, within 3-4 months after SCT, prolongs the remission. Has anyone else heard of this trial?

Initially, I wasn't going to do it as I felt I wanted to wait to see how long I could maintain remission without treatment. However, consultant told me that as I have more aggressive IgA myeloma, it has a tendency to relapse more quickly. I knew this but I have to say I was shocked when he told me average remission time even after SCT was less than 12 months for IgA!!!!

As I am already just over 3 months into remission after SCT, I feel compelled to take part so I will be signing up on 30th August.

Do any of you have IgA and if so what have you been told about remission if anything?

Sorry got to go now, youngest daughter asking me to play a card game. 🙂

Thanking you in advance.

Jacqui
xx

[anndrysdParticipant]

I have IgA myeloma, though my consultant has never mentioned that it is more aggressive. I had 2 years and 3 months out of my first SCT (Aug 2006) and 15 months from the second one (Aug 2009). I have since had a year of Revlimid and now am on 4th cycle of Velcade, though I had a 6 hour trip to hospital today to have no medication as my platelets are too low. My concern tonight is whether we go ahead and instal solar panels. I have always gone for trials myself because what have you got to lose???

[adminKeymaster]

Hi Jacqui

I don't post much on here. But, I'm on my own tonight and have had a glass or two of wine and in my maudlin moments, often look on the site. Having done so tonight, I came across your post. I too have IgA myeloma. Actually, I have IgA lambda light chain myeloma. I also have Amyloidosis. Because of the Amyloidosis, SCT was not appropriate for me immediately after my frontline treatment because of potential problems to my kidneys.

I was diagnosed in February 2011 at the age of 42 and underwent 6 cycles of CTD. I was fortunate to achieve a complete response after only 2 cycles and have remained in remission since May 2011. I have recently had a stem cell harvest and am pencilled in for transplant in November.

I am under the care of my local haematologist, the National Amyloidosis Centre at the Royal Free and UCH. Nobody has ever told me that IgA type is more aggressive. I have been told that generally, my initial frontline treatment has an average remission of 12 months. I was told by my UCH consultant that the myeloma clone should be making a reappearance about now ( I finished my treatment in August 2011). My local haematologist has said that, in common with other cancers, myeloma in younger patients tends to be more aggressive than in older patients. However, he has never referred specifically to IgA and although he too said I may relapse now, he also said I may not!

I do look on the US Myeloma Beacon site and the impression I have gained over the last 18 months is that it is true that IgA was once thought to be more aggressive. However, nowadays, physicians are saying that's not strictly true. It's actually
down to the cytogenetics involved. However, statistically, I think that those with IgA do tend to feature more than other types to have the high risk chromosomal abnormalities but I don't think it necessarily follows that if you are IgA, you have a more aggressive subtype – at least that's what I'm hoping!

Good luck with the trial!

Tracey

[tomParticipant]

Hi Jacqui

As most folk on here will know about me is I dont ask Q I am not sure what type I have am the one that if the Dr is smiling then am Happy 😀 its wrong I kknow but it works for me.

Godd Luck on your trial. and dont worry about how often you log on here its for you to use as and when 😎

Tom "Onwards and Upwards" xx

[TinaParticipant]

Hi Jaqui,

My husband Patrick had IgA lambda light chain myeloma and we [i]were[/i] told it was an aggressive form of Myeloma. Patrick was in remission for only 10 months after SCT and unfortunately did not respond to Velcade very well at all. But after Revlimid failed he did have a very good year on Bendamustine which from what I hear on this forum has been dismissed by many consultants.
In my humble opinion I think you should go for it.

My very best wishes

Tina

[HelenParticipant]

Hi Jacqui
I too have IgA lambda light chain myeloma and am oligo secretory, I was told a similar story to Tracey, though I'm without the Amyloid, I have not asked what my chromosomal risks are, I'm not sure I want to know that just yet, when I relapse I'll ask. I had my SCT a year ago. At the minute I'm in comple remission, but I'm on Revlimid maintenance as part of the myeloma xi trial.
As with anyone with this disease you have to take it as it comes, you have to ask yourself what you have to lose and what you might gain, personally I'd hit it with whatever is going if I thought it would prevent damage or slow down the disease. Good luck with your decision making.
Love Helen

[jackspratParticipant]

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

[jackspratParticipant]

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

[OutdoorsPaulParticipant]

Hi jacqui
I to have Lightchain Myeloma and have been told a similar things to you,I to would go for the clinical trial.I am due for a "allo-graph" in December and also been offered a clinical trial for that.
take care Paul

[jackspratParticipant]

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

[tomParticipant]

Hi Jacqui

Good Luck with the trial and I think same its a treatment that they aint sure about ?
Good Luck for your start on thursday.

Tom "Onwards and Upwards"

[jackspratParticipant]

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

[Author]

Posts