Multiple Myeloma

Posted by Texas Freedom @oregongirl, Jul 24, 2018

My RA doctor sent me to an Oncologist and her reason to me included such words that I could not get it. All I remember is that something had to be checked out and they will try one thing and there could be some other means...bla bla,... I have not been good about asking direct questions. Maybe I don;t want the answers. But now after two visits to the Oncologists and one blood work getting messed up, I spoke up. He said that the Free Kappa and Lambada Light chains were showing possible signs of Multiple Myeloma. One more blood test to use a compare and I got a call yesterday saying that the tests results show a 1% read. He wants to wait it out about a year and follow me then. He thinks that maybe this is showing up because of something else is wrong. Gee, don't I get a hint of what that could be? Also, I have read if you put off treating Myeloma, it could be harder to get it. Ok, I am sending a note to my Primary and to my RA and putting them on notice. I want to know what it is that could be causing even the low reading if I don't it? What else is wrong?? Anyone have any experience with Myeloma?

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Colleen Young, Connect Director | @colleenyoung | Feb 13, 2023

In reply to @henriques "But knowing it's a chronic disease makes life very unsettling. For how long is it that..." + (show)

@henriques, I believe you were asking this question of @carolee888 or perhaps @gingerw. I'm tagging them so they see your questions.

richardab | @richardab | Feb 14, 2023

There are numerous blood and urine tests which will be done to diagnose Multiple Myeloma. There is a large amount of excellent information on web sites regarding the disease, possible different stages of it (MGUS, Asymptomatic Myeloma), ways to diagnose the disease, treatments, etc. Numerous excellent support sites including this one and others. Get an oncologist who will be an active partner in this disease, not someone who just talks and doesn't explain. I have an automimmune condition also (PMR) plus possibly something else and the rheumatologist believes my Smoldering Myeloma complicates this.

Ginger, Volunteer Mentor | @gingerw | Feb 14, 2023

In reply to @henriques "But knowing it's a chronic disease makes life very unsettling. For how long is it that..." + (show)

@henriques I will be 70 this year. I was diagnosed with MGUS November 2017, smoldering myeloma November 2018, Active Multiple Myeloma November 2019, and started chemotherapy August 2021. I have been on chemo since then. In addition to the mm, I am a chronic kidney disease patient [unrelated to the myeloma] and am on daily dialysis. This complicates my case, but i have a marvelous team who works together.

By the way, the timeline demonstrated above is not the way most people advance. My hematologist/oncologist and I agree that I must be an overachiever! The vast majority of people go many years with no advancement of their condition.
Ginger

jimbond48 | @jimbond48 | Feb 15, 2023

In reply to @gingerw "@henriques I will be 70 this year. I was diagnosed with MGUS November 2017, smoldering myeloma..." + (show)

I was diagnosed with stage 3 myeloma 31 years ago, and been in remission the last decade. Each case differs. Our lessons learned & strategies are in 4 minute YouTube videos. Search patient 007 myeloma, then hit videos tab to see each episode.

henriques | @henriques | Feb 16, 2023

In reply to @jimbond48 "I was diagnosed with stage 3 myeloma 31 years ago, and been in remission the last..." + (show)

I watched your video.....Very inspiring.....you have tremendous will power....also your wife's efforts truly need to be appreciated. I keep saying to myself my brother will see his children's children.

jimbond48 | @jimbond48 | Feb 16, 2023

Thank you. I agree that my wife deserves the credit. We often virtually tell our story to blood cancer support groups, and welcome more opportunities. No fee, no medical advice, no drug promotions, just our experiences. Kathleen’s caregiver strategies and lessons learned are well received.

laurie6 | @laurie6 | May 4, 2023

In reply to @oregongirl "Yes. His feeling is the low results are not saying I have Myeloma nor are they..." + (show)

I’ve been “sitting on it and watching it” with my primary care physician and my hematologist. They follow patterns in blood results OVER TIME and that diagnosis is WAY PREMATURE still and I’ve had “this” since my mid 30’s and now I’m heading to age 60 and there was still a decision to wait on bone marrow biopsy.

You really can’t DEMAND a diagnosis and weigh it fairly.

I still don’t “have” multiple myeloma but I have anemia and hyponatremia and electrolyte imbalances. We have added elemental iron over the years and then doubled the daily dose to eventually remove iron deficiency as the cause of the lab results similar you are looking at.

Most people get by with increasing ferritin (iron) and there are a zillion other things that can cause such lab results.

My dr said to look for horses before we look for zebras.

I got the feeling I could probably INSIST on getting the bone marrow biopsy to VERIFY I might someday have a form of blood cancer. Then I could have my long-awaited DIAGNOSIS, maybe.

It still looks like could be lupus and could be a lack of proper rest and definitely could be caused by dietary supplements we all use. My choices were diuretics and made the electrolytes worse.

Getting the diagnosis is never a guarantee of anything but an opinion.

I gave it a lot of thought over the years and I decided to “get busy living or get busy dying” and I’ve had 58 years of misunderstood anemia and it’s starting to look worse but the cardiologist said I am ok but will have problems later in life and the nephrologist said I need to EAT PROPERLY and THAT was the most important detail I got.

Eat right, exercise, sleep right. You won’t get multiple myeloma nearly as soon, if ever.

Every dr I have said so.

We are stuck with self care management…

laurie6 | @laurie6 | May 4, 2023

So I’m eating a lot of beans (legumes) and limiting fluids and NOT getting that diagnosis. I kept planning my death but found stuff I wanna do in the future. Adjusting my THINKING is the most important part of my self care routine.

Ginger, Volunteer Mentor | @gingerw | May 4, 2023

In reply to @laurie6 "I’ve been “sitting on it and watching it” with my primary care physician and my hematologist...." + (show)

@laurie6 Welcome to Mayo Clinic Connect. Great attitude! In the end, we need to be our own advocate, and be part of the team who makes up our caregiving people. We are the center of it all. The medical community can give us direction and thoughts all they want, but we make the decision on the action to take.

Most people who get a diagnosis of MGUS will never progress beyond that. Others will go many years before an active diagnosis of multiple myeloma. "Get busy living" is a good motto!
Ginger