[blair77]

Newly diagnosed at 43

by blair77 on Sat Apr 06, 2013 10:59 am

My husband (43) was just diagnosed with multiple myeloma. I am trying to understand how to figure out if he is high or low risk? We are also located in Richmond, VA and are wondering what the best facility would be to receive treatment from?

[Multibilly]

Re: Newly diagnosed at 43

by Multibilly on Sat Apr 06, 2013 8:01 pm

Hi Blair 77,

So sorry to hear that your young hubby has joined this club. But take heart that there are great treatments out there and one can live a good quality life. Ignore all the life expectancy stats you are likely to find out there. They are very dated and don't reflect current reality.

Do you know what stage of multiple myeloma he has been diagnosed with?

Also, has he already had all the tests outlined here?

http://myeloma.org/ArticlePage.action?tabId=1&menuId=204&articleId=3177&aTab=-1&gParentType=menuitem&gParentId=204&parentIndexPageId=107

https://myelomabeacon.org/resources/2008/10/15/diagnosis/

Below is one of the more recent articles from the Mayo that Ricardo on this site recently posted on the subject of risk classification. However, you may find this a bit overwhelming to understand if you are just learning about this disease. I would encourage you to ask questions of the forum if you aren't following it.

https://myelomabeacon.org/forum/mayo-clinic-multiple-myeloma-guidelines-2013-t1810.html

You will also find that there isn't total agreement in the medical industry on risk classification of multiple myeloma. The above is just what the Mayo group says (the Mayo also tends to be somewhat biased to doing stem cell transplants, which is another controversial subject that this forum can comment on as you get further along in your education on the disease).

Also be sure to seek out a doctor that specializes in multiple myeloma and sees many multiple myeloma patients a year. This makes a huge difference. Don't rush into anything treatment-wise and take the time to really understand all your options. Knowledge is power with this disease.

Best of luck to you and your hubby!

[blair77]

Re: Newly diagnosed at 43

by blair77 on Sat Apr 06, 2013 8:32 pm

Thank you so much for replying! I tried to read through the links you posted but was a bit overwhelmed and confused. We were not told a stage but were told to begin Revlimid and plan on an Auto stem cell transplant in 8-10 months. My husbands M spike is 1.8, bence jones protein in urine, bone thinning but no lesions on the skeletal X-ray, no hypercalcemia, but hgb and platlets have become low ( hgb-11, platlets 105) bone marrow biopsy showed 20% plasma cells lambda light, FISH negative for multiple myeloma changes, karyotype normal, beta 2 micro globulin 3.2, LDH normal. Any insight into these results would be greatly appreciated!!!

[Multibilly]

Re: Newly diagnosed at 43

by Multibilly on Sat Apr 06, 2013 9:20 pm

So, your genetic tests (FISH test, etc) are normal, which is great news. That likely means he is not high risk. But sounds like he is anemic, so you meet the "A" in the CRAB criteria and that makes him symptomatic and not smoldering. It's a bit worrisome to me that the doc hasn't even shared a staging with you, but is talking about putting him on chemo and doing a stem cell transplant, without discussing other options (i.e. chemo only, different chemos, etc).

You can figure out the staging yourself if you have your lab reports. He could very likely be stage 1, but that is just a guess based on incomplete numbers.

http://en.wikipedia.org/wiki/Multiple_myeloma

Rather than worry about the exact risk classification right now, I would again really suggest getting a second opinion on a treatment plan from a specialist that lives and breathes this disease daily with many multiple myeloma patients...and would discuss a choice of proceeding with just chemo versus automatically putting you on a treadmill to do an ASCT (transplant), as well as different options of chemo treatments (there are many out there). A doc that only sees a handful of multiple myeloma patients may not be up on all the latest treatments and options.

You may find this thread to be helpful in understanding the many choices for treatment out there.

https://myelomabeacon.org/forum/looking-for-feedback-on-recommended-first-round-treatment-t1502.html

In any case, don't rush into a treatment program. Take your time, read a lot, ask a lot of questions and talk to at least one other multiple myeloma specialist, if not two others (preferably from different groups/hospitals, since docs in the same cancer group or hospital often tend to share common philosophies on treatment plans).

There are a lot of folks on this forum that are great people, have a lot of experience with multiple myeloma, are quite compassionate and will help you.

[blair77]

Re: Newly diagnosed at 43

by blair77 on Sat Apr 06, 2013 9:34 pm

Thank you so much we will define rely be taking your advice!!