[gloria k.]

In the dark

by gloria k. on Sat Aug 23, 2014 8:12 pm

I was diagnosed August 13th and I am shocked.

I did have the MGUS cells for 3 years and I have had 2 hip operations, November 2012 and March 2014. When I went for my pre-op in March they said my hemoglobin was extremely low. They gave me an infusion and I had the surgery. This discovery prompted a whole battery of tests, a skeletal survey, many vials of blood, and a gallon of urine ... which led to a bone marrow biopsy.

I feel great, my hemoglobin is normal, my blood pressure is normal, I have no cholesterol, no heart problems and the only pill I take is for an underactive thyroid. I eat only fresh food, rarely eat out, and now my whole world is upside down.

The oncologist is talking about a lethal dose of chemo, and a cell transplant as a slow-down effect. The bone survey last February was perfect, no trouble there. I don't ache anywhere except my hip and back area on the side where the hip was replaced. Assuming that is normal. The other hip was done 2012 and is now perfect.

I am so scared having witnessed so many friends and relatives fade away suffering after chemo. My mother passed away 3 years ago and in the last month of her life in hospital they discovered multiple myeloma. She was never sick and was extremely mobile, lived alone and never presented with any bone pain or kidney complications.

When she passed I got tested and the results were MGUS cells. Now on another routine investigation because of the hemoglobin my doctor ordered all those tests which landed me back in the oncologist office.

Is there anyone out there that has this disease and no symptoms. I guess it is stage one.

[Multibilly]

Re: In the dark

by Multibilly on Sat Aug 23, 2014 10:49 pm

Hi Gloria,

Thanks for reaching out to the forum. Lots of folks here are happy to help you.

I am a little confused about exactly where things are for you right now as far as your markers and symptoms are concerned.

What is your M-spike, and plasma cell percentage and free light chain ratio (include units of measure please)? Have the doctors told you that you have any adverse cytogenetics (genetic mutations)?

Do you in fact have anemia or any of the CRAB symptoms?

[C] Calcium elevation in the blood S. Calcium >10.5 mg/l or upper limit of normal{}
[R] Renal insufficiency S. Creatinine > 2 mg/dl
[A] Anemia Hemoglobin < 10 g/dl or 2 g < normal (maybe "yes", maybe "no" based on what you said below?)
[B] Lytic bone lesions or osteoporosis (it sounds like "no" based on what you said about
the bone survey results)

You mentioned a "hemoglobin" issue: ".... because of the hemoglobin my doctor ordered all those tests which landed me back in the oncologist office". But you said earlier that "my hemoglobin is normal". So, I'm a bit confused on this point.

I'm basically just trying to understand what is prompting your doc to think you have symptomatic multiple myeloma and therefore recommending a transplant at this time?

[Cheryl G]

Re: In the dark

by Cheryl G on Sat Aug 23, 2014 11:46 pm

Welcome to the forum, Gloria. Sorry you have to find yourself here, but I think you'll find it a very helpful group of people.

Multibilly has given you a great set of questions to pursue with your doctors. The key questions you need to ask first are the ones about why you got the multiple myeloma diagnosis.

It's perfectly understandable that you would be shocked by the diagnosis, but you also need to understand that, these days, people often live for many, many years after their diagnosis. There are people here in the forum who were diagnosed 10 or 15 years ago, when treatments were not nearly as advanced as they are today. And more treatments are on the way.

I don't know where you are located, but if you're not far from a major cancer center, you should consider having your case reviewed by a doctor who specializes in multiple myeloma. Multiple myeloma is not a common cancer, and research related to myeloma is constantly advancing. So it really helps to be under the care of a physician who specializes in the cancer.

If you let us know where you are, we can give you advice on where you might find a myeloma specialist. Or you can consult the treatment center list here on this site,

https://myelomabeacon.org/treatment-centers/

Good luck!