[Lizzie]

1q21 gain chromosome abnormality

by Lizzie on Tue Jan 28, 2014 10:24 am

Hi friends!

I'm looking for additional information about the 1q21 gain chromosomal abnormality. This diagnosis seems extremely unfavorable, and my oncologists seems perplexed because I also have gains of other chromosomes which he says would fall within hyperdiploidy multiple myeloma, and that is generally favorable.

That said, has anyone been told they have this and what have their oncologists presented as far as treatment options (knowing some patients with this do not respond favorably to standard induction therapy). I am newly diagnosed and hope to make smart decisions regarding treatment options.

Thank you so much for sharing!

[Multibilly]

Re: 1q21 gain chromosome abnormality

by Multibilly on Tue Jan 28, 2014 10:50 am

Lizzie,

I am a bit reluctant to say it, but recent studies have shown that the negative impact of 1q+ generally trumps the benefits of hyperdiploidy.

https://myelomabeacon.org/resources/mtgs/ash2013/abs/529/

But you need to remember a few things here as you look at PFS and OS stats.

1. See where the study was done (UK). Unfortunately, many European patients simply don't have access to most of the latest drugs we have in the USA arsenal, nor did the study outline what treatments the patients utilized.

2.It's a whole new ballgame for high-risk multiple myeloma patients with the latest generation of drugs that have been recently approved, including the various promising drugs in the pipeline.

You might want to consider opening up your profile to receive private messages. I can point you to couple of folks that share this status.

[Rhonda]

Re: 1q21 gain chromosome abnormality

by Rhonda on Sat May 16, 2015 6:09 pm

Hi

I saw your post and am interested in how you are doing. I am also interested in learn more about this chromosomal abnormality as I too have a 1q21 gain and to tell you the truth I am scared. I would really like to hear from people who have this and what treatments have worked for them. I am currently on Kyprolis, Revlimid, and dexamethasone (KRD) and have a stem cell transplant scheduled for July. I hope this is finding you well.

Thanks Rhonda

[Mister Dana]

Re: 1q21 gain chromosome abnormality

by Mister Dana on Sat May 16, 2015 10:51 pm

My FISH test showed translocation(11,14), plus "extra copies of the long arm of chromosome 1". Is that the same as "gain 1q21"? I also had extra copies of chromosomes 4, 13, and 17. All that bumped me from standard risk of t(11,14) up to intermediate risk on the MSMART chart. I received CyBorD, that is, cyclophosphamide, dex and IV Velcade once a week. Within a few months I had a complete response going, but I stuck with it for the full five months, then went for he autologous SCT in July 2014. The myeloma is still gone now (May 2015).

[Rhonda]

Re: 1q21 gain chromosome abnormality

by Rhonda on Sun May 17, 2015 10:12 am

Hi Mister Dana

It really is great to hear you are in complete remission. It is my understanding that extra copies of the long arm of chromosome 1 is the same as 1q21, but this is all new to me. My first bone marrow biopsy showed an additional copy and the second showed 3 which really scares me as the report said 4 copies at relapse is not good.

I started with 3 cycles of CyBorD but it only stabilized me so my doctor decided to try KRD in January and this will be my 5th cycle. My numbers are improving but I am not in complete remission I still have 10 to 20% plasma cells but at least my numbers are improving. I am glad your auto was a success. My BMT doctor told me that there is only 40 to 50% chance that is will work.

I know we are all individuals with different circumstances, but it is good to hear positive results from others. Thank you for the response

[Stevem57]

Re: 1q21 gain chromosome abnormality

by Stevem57 on Mon Jun 29, 2015 5:32 pm

I just learned that I too have the 1q21 gain. I have been considered smoldering until my oncologist did his first biopsy for me (not MY first, but the first with him). He's been my oncologist for 4 years and has kind of ignored me until this 1q21 gain popped up and now he is recommending a stem cell transplant.

Does this genetic abnormality show up all of the sudden? It wasn't on my other biopsies, at least I don't think it was.

[JimNY]

Re: 1q21 gain chromosome abnormality

by JimNY on Wed Jul 01, 2015 7:02 pm

Hi Steve,

Sorry I haven't had a chance to get around to answering your posting until now. I hope you see this in time for me or others here in the forum to be of help.

You may want to start a new forum thread to describe your situation in more detail, with things like when you were diagnosed and what has happened to some of your key lab results since your diagnosis. I'm thinking things like your M-spike, free light chain levels, and perhaps your bone marrow biopsy results (plasma cell percentage).

If your doctor is recommending that you do a stem cell transplant, it's almost certain he feels that you no longer fit the criteria for having smoldering myeloma. Or, to put it differently, he thinks your disease has progressed to symptomatic multiple myeloma.

I doubt that he decided this based solely on the chromosomal abnormality you mentioned. Instead, there probably were changes in your free light chain levels (and ratio), or the plasma cell percentage in your bone marrow, that convinced him that you've progressed.

But, like I said, it's hard to know without seeing some of your key lab results.

You probably already know this, but the criteria for diagnosing smoldering multiple myeloma and symptomatic multiple myeloma changed last year. The new criteria are described in this article:

https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/

Finally, a myeloma patient's chromosomal abnormalities can change over time. They are not set in stone. So the fact that you have the 1q21 gain now does not mean an error occurred when you were tested earlier. Instead, it probably means that your myeloma has evolved so that it now has this abnormality, most likely in addition to whatever abnormalities you had in the past, if you had any.

Good luck!