[SparkleTrail]

Is it possible I have multiple myeloma?

by SparkleTrail on Wed Oct 26, 2016 4:30 pm

Hi Everyone.

I don't know if I am in the right place but happy to hear anything you guys have to share with me. My grandmother died of multiple myeloma in 2000. Believe it or not, it was her FOURTH cancer.

When she died, her oncologist told my mom and I that he could test us to see if we were at risk. I'm assuming he meant the MGUS test now that I have read some stuff here. My mom said she would rather not know and although I was 31 years old, I respected her wishes and didn't get tested myself.

My mother, as it so happens, died just nine days after being diagnosed with leukemia in 2006.

I was adopted on my father's side so I only know half my history, but cancer is everywhere in our family. My adopted father's family all died young from heart stuff, so I am my last living family member.

Trying to put together the pieces of my medical history from memory when I'm feeling so poorly isn't very easy. So maybe with what I know and your knowledge you can help me. I do have a lot of medical experience.

Starting in May, I had shoulder pain that would come and go. I hadn't had an injury and am not a consistent fitness person, so there wasn't a good explanation to it. Eventually it was hurting pretty much every day, especially while laying down.

I should also say that I have been "sicker" this year than I have in the last five years combined. I've had the flu (only my second time ever to get it), a tooth infection, four colds, strep that was resistant to treatment (possible because of the antibiotics I had been on for the tooth) that returned twice.

I had a pretty stressful summer due to some other factors and I was getting tired. So when the fatigue started really ramping up in August, I just explained it away as stress. By the end of August I was just sitting around unable to will myself to get up and do things (I own my own business). My kids were back in school so I let myself off the hook that first week thinking I would tackle with gusto the next week, only that couldn't happen. By the end of the third week I knew something was really wrong.

My best friend is an RN and begged me to go to the doctor. I thought perhaps I had depression or something. I was having major body aches, headaches, my shoulder hurt pretty much all the time and couldn't be used normally. My body felt like I had the flu.

I went to my PCP, who I barely know. She did put me on an antidepressant, did some labs, but also wanted to test me for tick diseases. I told her I hate the heat here and am not outside in the summer, but it turned out I tested IgM positive to Rocky Mountain spotted fever. I was shocked.
I don't recall a tick bite, didn't get the rash either. but that's not unheard of.

Also in my lab works I had low RBC and low hematocrit. She said to take a multivitamin.

Rocky Mountain attacks the red blood vessels (not cells), so I thought maybe that was related.

Only I haven't felt better while on the treatment. My best friend, knowing my family history, thought perhaps I should entertain the thought there could be more.

When I put any combination of two of my symptoms, I keep seeing multiple myeloma pop up. So I started reading again and refreshing my memory. My grandmother was older when she got it, so she did have the fatigue, which we blamed on age at the time. Then she had rib pain and that is how it was discovered – tiny holes in her rib bones.

I just got off the phone with my PCP nurse and asked them to refer me to hematology / oncology. I talked with a clinic yesterday who does genetic counseling and then will decided if you need testing or not. And she felt there was enough reason to warrant ruling this out.

What do you guys think? Am I making a mountain out of a molehill? Anything I should know before the appointment?

Thanks in advance.

[SparkleTrail]

Re: Is it possible I have multiple myeloma?

by SparkleTrail on Thu Oct 27, 2016 11:21 am

I see a hematologist-oncologist next Wednesday. The appointment was just made.

[Multibilly]

Re: Is it possible I have multiple myeloma?

by Multibilly on Thu Oct 27, 2016 2:07 pm

SparklTrail,

Glad to see you following up with a specialist. Given your family history and some of your symptoms, it seems reasonable to me to run a few very basic and inexpensive tests to rule out multiple myeloma. At a minimum you would want to have the following tests done:

Serum immunofixation
Serum protein electrophoresis
Serum free light chain assay

Let us know how things go and good luck.

[SparkleTrail]

Re: Is it possible I have multiple myeloma?

by SparkleTrail on Fri Oct 28, 2016 9:32 am

Thank you so much for that list! I will write those down and take them with me. My insurance is paying 100% until the end of the year, so I'm fine with any testing while I don't have added costs and co-pays to manage.

Would those tests tell me if I have MGUS, if I don't indeed have active multiple myeloma?

[Multibilly]

Re: Is it possible I have multiple myeloma?

by Multibilly on Fri Oct 28, 2016 12:25 pm

The above tests will give you a very good idea if you might have a plasma cell disorder or not, but won't definitively tell you the specific diagnosis (MGUS, smoldering myeloma, multiple myeloma, etc) if you do in fact have a plasma cell disorder.

I say this because you've got kind of a tricky situation since some of your symptoms could be ex­plained by either Rocky Mountain fever or a plasma cell disorder. It will be up to the oncolo­gist to help sort all this out once he has your initial test results.

Depending on what the doctor finds, he may suggest additional testing such as a bone marrow biopsy and/or an MRI or PET/CT scan to help confirm a specific diagnosis. With these addi­tional test results and also reviewing your CBC and CMP test results, he would then have enough information to make an exact diagnosis of the kind of plasma cell disorder you have (again, assuming you even have a plasma cell disorder to begin with).

Good luck and let us know what happens.

[SparkleTrail]

Re: Is it possible I have multiple myeloma?

by SparkleTrail on Sun Nov 06, 2016 12:56 pm

I saw the hematologist-oncologist on Wednesday. He did all of the tests you suggested without any prompting from me. He called me a mystery and said he didn't see a glaring red flag that I have multiple myeloma or leukemia (both are in my family), and considering I got so sick so fast, he feels that is not the marker of cancer. So who knows?

He did a lot of testing that was even outside his normal wheelhouse (immunity, viral panels, all branches of the white cells, Rocky Mountain spotted fever, a few other things), but I couldn't get back in for follow-up until the 18th. I'm hoping some of it will show up in the online portal before this, but we shall see.

I need an MRI of my shoulder, as the treatment for that has not been successful. The pain kills me, especially at night. I am trying to hold off of that with ortho until I know more about this blood testing in case I need an MRI from a hematology-oncology perspective, so I don't have to do two of them.

Thanks for the help.