[vicstir]

High-risk multiple myeloma - what does it mean?

by vicstir on Sat Mar 15, 2014 10:58 pm

I have been told that I have high risk myeloma. What does that mean in laymen's terms?

I am due for a bone marrow transplant (BMT) in May. I have not and am not questioning my treatment. Just the definition of what it means to be in the 20% of patients whom fall into the category of high risk. Please keep it simple in explanation. Thanking you!

[kjpoppit]

Re: High-risk multiple myeloma - what does it mean?

by kjpoppit on Sun Mar 16, 2014 1:13 am

Hi Vicstir,

As I mentioned elsewhere, I am also high risk and I have symptomatic myeloma and am currently in treatment. I don't know if yours is symptomatic or mgus or smoldering.

The simplest way for me to explain high risk is it means your myeloma will be harder to fight and you will relapse sooner than others. Of course everyone is different and responds differently, but the averages give you an idea.

I was told median time frame before relapse would be 2 years. I have been given hope of a possibly longer remission depending on my treatment choices.

I would recommend consulting a multiple myeloma specialist. This website is also a great place for support and research.

Best wishes to you.

[Beacon Staff]

Re: High-risk multiple myeloma - what does it mean?

by Beacon Staff on Sun Mar 16, 2014 6:13 am

Hi Vicstir,

Kim's explanation is a good one.

If you need further information, here are two links that may be helpful.

The first is an article published last year at The Beacon that describes the latest consensus definitions of low-risk, standard-risk, and high-risk multiple myeloma.

Experts Publish Consensus Risk Classification For Multiple Myeloma

In addition to the above article, there also are a number of other articles The Beacon has published over time related to high-risk myeloma. You can find most of them at the high-risk myeloma topic (tag) page,

https://myelomabeacon.org/tag/high-risk-multiple-myeloma/

Please always bear in mind the point that Kim made about classifications such as "high risk" being based on "typical", or "average", responses to treatment. There is still variation from person to person.

Good luck!

[blessthischick]

Re: High-risk multiple myeloma - what does it mean?

by blessthischick on Sun Mar 16, 2014 8:53 am

Hello Vicstir

It should be noted that my high risk, which I mentioned here, is in relation to my genetics, there are other parameters that indicate high risk. Although you want an answer in laymens terms, I think the tables in the following article may be helpful for you, it is pretty clear and when I saw them at first it really hit home:

http://www.cancer.gov/cancertopics/pdq/treatment/myeloma/healthprofessional/page2

I do not need treated as yet, I am still MGUS/smoldering awaiting further bone marrow biopsy soon so our situation is different because you have already started treatment.

From what I have gathered there are difficulties treating high risk patients due to our genetics that mean they will be hit hard with chemo/treatment but the myeloma will be very resistant to it and unfortunately the median outcome survival is around 2 years. This has put a completely different slant on how I will live my life as I possibly have not made the most of it before. I am glad I know what is ahead of me so I can make more informed decisions at the moment.

I hope this is not too much information for you especially as you might not be feeling well with your treatment. I always feel that honesty and openness is best. I feel I would have done you a disservice if I was not completely honest with you. There are breakthroughs all the time in myeloma, Vicstir and remember that the statistics they gathered for these tables above were gathered starting from 2 years ago and treatments have moved on since then so there is always hope.

My very best wishes to you xxx

[vicstir]

Re: High-risk multiple myeloma - what does it mean?

by vicstir on Mon Mar 17, 2014 2:32 am

Thank you. The answers given are much what I had thought from what I had read and taken in from various sources. I don't know about anyone else, but some of the information is just too confusing, and when your head is kind of on other things you wonder if you are reading too much into all that you see and hear.

So thanks for a bit of clarity.

I realise that all that we receive treatment-wise is a suck it and see proposition in the long run. Nonetheless, I decided some months ago that I have much to survive for (my two children 5 & 4) and that I am not ready to die. Sp lets see how far positive thinking will get me to go with my treatment.

Much Love & Hope to all..
Vic