1. < Blood Cancers & Disorders

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?

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Mentor
Patty, Volunteer Mentor | @pmm | May 5, 2023
In reply to @laurie6 "I’ve been “sitting on it and watching it” with my primary care physician and my hematologist...." + (show)
@laurie6

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…

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I loved this. Beautifully said.
“My dr said to look for horses before we look for zebras.”
To this I say, “amen.”
I am with you on the bone biopsy. My medical team and I have discussed and it does not change the trajectory of my treatment. We watch the blood analysis and if it gets wanky we will take action.
I try to eat right and exercise. I’ll do my part and I expect my medical team to do theirs. Sometimes I feel that they are a little too solicitous. Most of the time I am grateful that they are invested in my care. They are good clinicians.
I have added gratitude to my morning routine. I am grateful for each new day and the opportunity to watch and experience all that surrounds me. I will be 71 in a few days and I hope to have another 20 or so more years of beautiful spring mornings.
I have baby birds nesting in my front door wreath.
Life is good.
Patty
REPLY
1 reply
laurie6 | @laurie6 | May 5, 2023
In reply to @pmm "I loved this. Beautifully said. “My dr said to look for horses before we look for..." + (show)
@pmm

I loved this. Beautifully said.
“My dr said to look for horses before we look for zebras.”
To this I say, “amen.”
I am with you on the bone biopsy. My medical team and I have discussed and it does not change the trajectory of my treatment. We watch the blood analysis and if it gets wanky we will take action.
I try to eat right and exercise. I’ll do my part and I expect my medical team to do theirs. Sometimes I feel that they are a little too solicitous. Most of the time I am grateful that they are invested in my care. They are good clinicians.
I have added gratitude to my morning routine. I am grateful for each new day and the opportunity to watch and experience all that surrounds me. I will be 71 in a few days and I hope to have another 20 or so more years of beautiful spring mornings.
I have baby birds nesting in my front door wreath.
Life is good.
Patty

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Love the nest! Wow! We had doves one year but stray cats made that a bad idea. A neighbor home has a seagull nest AGAIN THIS YEAR it is halfway made and they are settling in on the roof where we can all watch the babies learn to fly…

No idea how the homeowner stands the poop AND fish bones! LOL

Very grateful for tolerant neighbors!

I definitely have spent a good deal of my life seeking the elusive diagnosis.

I’m not going to be doing anything differently except lifestyle and self care habits.

That’s no fun at all! But life is the stuff in between the stuff that we are paying attention to.

I am still able to do my jobs safely, so I better GET TO WORK.

I got myself a couple of jobs I can do while lying down when needed. Created both jobs before it got cool to work from home…

I’ve wanted a diagnosis with a proper label and a handicapped - parking - placard, forever.

But my therapist mentioned the other spots in front of stores are often available to anyone! LOL. So I get my front parking 🅿️ near those assigned spots. It helps! Being NEAR the store is possible without a special designation.

Got an injured thumb from getting an unauthorized bone away from a dog and I’ve been “crippled” by the lack of a fully functioning thumb on my right hand. It’s VERY FRUSTRATING and I’m SO GLAD I’m not unwell every minute of the day. That would suck.
All of my friends are in their 70’s and 80’s and apparently there is lots of stuff to do if we simply take care of our own health.

REPLY
Mentor
Patty, Volunteer Mentor | @pmm | May 5, 2023

Ouch to the thumb story. Those dogs get so territorial when it comes to something that they consider their food. Frustrating not to have full use of your hands.
Feeling like doing things is so much better than feeling sucky. I agree. Self care is key.
I just retired a year ago and am figuring out a good balance between productivity and just enjoying not having a work schedule. You’re so smart to have figured out how to be able to work from home. Even during Covid I was “essential” and had to be at the hospital. I wanted to be less essential. 😂
Take care of yourself. We want you with us!
Patty

REPLY
yusbe | @yusbe | May 8, 2023

Hola, amigo, si las cadenas kappa y L... te dan alteradas eso responde a una Ganmatía Monoclonal, y según ese 1% debe ser la cantidad de células filtradas que tienes, mi esposo tiene un 50%, y ha sido diagnosticado con Mieloma Múltiple, ha sido bien doloroso para todos, solo tenía anemia. Parece que ese diagnóstico nos sacudió un poco más de lo que esperábamos,ya le pusieron el primer suero citostático y luego de varios días ha comenzado a mejorar el apetito y su palidez ya no es tan apreciable. Tenemos mucha fe y mente positiva. Queremos ver nuestros nietos juntos.

REPLY
1 reply
pherbag | @pherbag | May 9, 2023
In reply to @yusbe "Hola, amigo, si las cadenas kappa y L... te dan alteradas eso responde a una Ganmatía..." + (show)
@yusbe

Hola, amigo, si las cadenas kappa y L... te dan alteradas eso responde a una Ganmatía Monoclonal, y según ese 1% debe ser la cantidad de células filtradas que tienes, mi esposo tiene un 50%, y ha sido diagnosticado con Mieloma Múltiple, ha sido bien doloroso para todos, solo tenía anemia. Parece que ese diagnóstico nos sacudió un poco más de lo que esperábamos,ya le pusieron el primer suero citostático y luego de varios días ha comenzado a mejorar el apetito y su palidez ya no es tan apreciable. Tenemos mucha fe y mente positiva. Queremos ver nuestros nietos juntos.

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If it helps, I have a long time customer that has MM. He had a stem cell transfusion 5 years and has been doing great ever since. His blood work is always good and lives a normal life. I have LC MGUS so I ask him a lot of questions and talking with him makes me feel better about my possible future.

REPLY
tlgreen12605 | @tlgreen12605 | May 10, 2023

I was diagnosed with 6% MGUS last year May after bone marrow biopsy. Doctor Hematologist/Oncologist said watch it may never change. 6 months blood work and annual biopsy. At 6 months my blood work showed dramatic jump in lambda light chain. He decided another biopsy and came back MM. In treatment now and numbers in bloodwork changed for good. He said rarely do they find it early. 2 more months then biopsy to see.

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1 reply
vgen | @vgen | Jun 23 10:19am
In reply to @JustinMcClanahan "Hello @oregongirl. You may notice I moved your discussion to the Blood Cancers & Disorders group...." + (show)
@JustinMcClanahan

Hello @oregongirl. You may notice I moved your discussion to the Blood Cancers & Disorders group. I am inviting a few members who have experience and have discussed myeloma to share their experience. @1nan, @beckyoutlaw1115, @ozys, @jeanroberts, @stephanieprieto, and @lisa54 have all discussed being diagnosed with a form of myeloma or being a caretaker for a loved one who has been diagnosed. They may be able to share some of their experiences with the diagnosis process and what they will be facing next.

@oregongirl, You mentioned you are sending note to your primary care physician and your RA, have you had a chance to discuss these results with a hematologist?

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My sister passed away from Multiple Myeloma last November. She was diagnosed very late in her illness.
I have had abnormal low indicators as well. My rheumatologist referred me to a hematologist. Getting appointment soon. I will let you know where I’m at after more blood tests. The Watch and Wait is scary to me as well.

REPLY
vgen | @vgen | Jun 23 10:21am
In reply to @tlgreen12605 "I was diagnosed with 6% MGUS last year May after bone marrow biopsy. Doctor Hematologist/Oncologist said..." + (show)
@tlgreen12605

I was diagnosed with 6% MGUS last year May after bone marrow biopsy. Doctor Hematologist/Oncologist said watch it may never change. 6 months blood work and annual biopsy. At 6 months my blood work showed dramatic jump in lambda light chain. He decided another biopsy and came back MM. In treatment now and numbers in bloodwork changed for good. He said rarely do they find it early. 2 more months then biopsy to see.

Jump to this post

Yes only reason i was tested was because of my sister had it and i was referred to rheumatology for inflammation issues. My GP didn’t think there was a issue, but referred me if i REALLY wanted a referral. Yes, please i would like to know before i am too far gone.

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