[kuntrylover]

New to the board and new with MGUS

by kuntrylover on Mon Nov 24, 2014 4:50 pm

Hey all,

I have been lurking on these boards for about a week now. Reading and learning as much as I can about MGUS and multiple myeloma.

I am 35 years old, and my long-time boyfriend and I have two lovely little ladies in our lives (2.5 and 4.5 years old). So this diagnosis struck me with fear and panic like I cannot describe. The days in between the diagnosis of MGUS and waiting to see if it was multiple myeloma or just MGUS were unbearable, as I'm sure many of you know.

So now, I've joined the 'wait and watch' group which I completely suck at. I'm a worrier, and quite possibly, a smidge of a hypochondriac! And Google doesn't help. So I spend most of my days reminding myself to be positive and fighting back tears.

I was diagnosed with myasthenia gravis (autoimmune disease) when I was 13. It had been in remission until a few months ago when I tested positive for it again. I do not have any symptoms so the positive test, according to one study, COULD BE because of the monoclonal activity going on with me now. Who knows... Sometimes it's all very overwhelming.

I'm trying to be positive, and reading so many posts from all of you has definitely helped.

I will be followed (and treated) at the Cleveland Clinic (at least, those are the plans now).

I just wanted to introduce myself and say 'hi' and 'thank you' for all the help (AND HOPE!) you all have already given me.

Happy Thanksgiving!

[Toni]

Re: New to the board and new with MGUS

by Toni on Mon Nov 24, 2014 11:52 pm

Hi Kuntrygal!

Oh boy can I relate

Hang in there. If they're pretty sure it's MGUS, there's a pretty good chance it is just that. Do you know what your test results are? M-spike? light chains? blood tests for protein, calcium, etc? And have they had you do any bone scans yet?

The best part of your whole message is that you are at Cleveland Clinic. You're in good hands!'

I was diagnosed last March/April. I'd had a lot of pain, tingling and fatigue. So I've had my paraprotein/M-spike checked 3 times already. So far it seems to be stable and they like to see that. I have IgG Kappa MGUS and my m-spike seems to hover around 1.0. We ended up doing a bone biopsy which also confirmed MGUS.

Please do share a little bit and that will help us to help you. You are not alone! That's what these boards are for.

[tindreamer]

Re: New to the board and new with MGUS

by tindreamer on Tue Nov 25, 2014 9:59 am

Glad to see you are looking around. I don't post too often, but as a father of 3 from the age of 6 to 16, the news of MGUS was not fun.

Please make sure to get a second recommendation. I am being treated by Mayo after originally working with the U of M. Both are great programs, but the process and approach to the treatment plans were completely different. In the end, Mayo's approach was to target the MGUS with radiation, versus starting an intense chemo plan at the U before a bone marrow draw. Recent studies and potential studies that will be ready in 2015 address your specific concern of "do I wait or not".

Just continue to watch your light chains and proteins. If there are no changes every time you go in to the doctor for check-up, then you are in a percentage that may not need a treatment plan. But if that light chain starts to move, ask your doctor (who should specialize in MGUS) about hoping not to wait and doing half or moderate chemo plan.

[kuntrylover]

Re: New to the board and new with MGUS

by kuntrylover on Tue Nov 25, 2014 11:26 am

Hi Toni and Tindreamer! Thank you for the replies!

Toni - My numbers aren't all that great. I actually feel fine. I have a little fatigue in my arms and legs, so they've tested me for muscular problems, and all those tests are negative. All of this MGUS stuff was discovered because I had bad heartburn in the summer and they tested me for celiac. When my test came back really high for IgG, my gastro doc referred me to a hema­tol­ogist.

My CRAB is all normal, and those numbers are steady from August. I've had a CBC and complete metabolic panels twice before they knew about the IgG and M protein, and they were trying to figure out what was going on with my heartburn. But the other numbers have me a little on edge. My M-spike is a 2.2. Barely any M protein in my urine. My FLC ratio is low at 0.01. My Beta is normal and my LDH is a little elevated. I'm a mix of good and bad, it seems. I'm IgG lambda. My nurse oncologist asked the oncologist who will be seeing me in February if he wanted me to have a bone marrow biopsy due to my M-spike being a little higher than it normally is in MGUS, but he said no. Bone scans were all normal.

Tindreamer, thank you for your experience. When you go to another hospital, are you paying out of pocket? You have me wondering if I should make an appointment to see my doctor sooner than February since I've only seen the CNP-Oncology so far. So are you MGUS but you're being treated with radiation already? How is it going? What were your numbers like when you started? Were they changing or steady? What made you decide to start treatment now? You have me very curious!

Right now I've changed my diet and am trying to take some supplements that are supposed to help, but supplements are meds, and I know whatever this disease wants to do, it will do.

[Carolee888]

Re: New to the board and new with MGUS

by Carolee888 on Tue Nov 25, 2014 4:53 pm

Tindreamer, instead of MGUS, are you saying that Mayo is treating your high risk smoldering myeloma, multiple myeloma or light chain disease? As far as I know, Mayo has not started treating MGUS. Just want to clarify. Thank you.

[NYscienceteach]

Re: New to the board and new with MGUS

by NYscienceteach on Tue Nov 25, 2014 7:52 pm

tindreamer

I too am curious as to whether you meant smoldering multiple myeloma or MGUS in regards to treatment at Mayo. As far as I know, no medical facility here in the US has started administering any form of treatment to MGUS patients. Just wondering if it was a typo.

[EPatty]

Re: New to the board and new with MGUS

by EPatty on Wed Nov 26, 2014 12:33 am

I was diagnosed with MGUS this July, new with this rare condition and diagnosed by my GYN during a routine bone density test. She referred me to a hematologist oncologist who ordered a skeleton survey and suggested to have a dose of zoledronic acid [Zometa]. Since I never heard about MGUS, I decided to get a second opinion with the Mayo Clinic at Jacksonville, FL.

I'm currently a patient of Dr Chanan-Khan. He ordered more blood tests and confirmed: SPEP positive for monoclonal protein, with an M-spike of 0.3 g/dL (3g/L), and IFE confirms IgG lambda monoclonal protein.

Since I have osteopenia, he ordered a marrow biopsy (I donate for research) and aspirate. He will be monitor with a bone density in six months (next March 2015). If pro­gressive, he will considered Bonviva (ibandronic acid).

I'm schedule for a blood work on December 12. I am reading all kind or articles, exercising, and started doing yoga.

Reading today this site, someone has heartburn and digestive problems linked to MGUS. Well, I've having serious problems with bloating. My GI ordered a colonoscopy and endoscopy that came normal. I'm taking pantoprazole (Protonix) and Culturelle, but still my stomach sometimes looks like a balloon.

[Multibilly]

Re: New to the board and new with MGUS

by Multibilly on Wed Nov 26, 2014 9:28 am

Hi Kuntrylover,

I'm a little surprised that your doc has not recommended a BMB yet. You say your FLC ratio is 0.01 (which is an involved/uninvolved ratio of 100). What are your actual lambda and kappa FLC values (with units of measure)?

[kuntrylover]

Re: New to the board and new with MGUS

by kuntrylover on Thu Nov 27, 2014 5:19 pm

MultiBilly,

I would have to look in my chart again to get the exact numbers. I actually asked again about the BMB and FLC ratio and they explained that there are "need to know" and "nice to know" things. And right now, it is just "nice to know."

They said that because I am MGUS, insurance will not yet pay for expensive tests that they need to determine risks factors and other things. They said they will monitor me every month and see what is happening with my M-spike If it goes up this month (December; that will be one month from my diagnosis), they'll do the BMB. If it is going down, then they want to monitor. They said my M-spike could move or it could stay constant and they don't want me going through a BMB twice really close together if they don't have to.

Another reason they want to follow my M-spike every month is because of my myasthenia gravis could be inflating my protein number.

Happy Thanksgiving!!
Elissa