possible Myeloma ? big shocking surprise !!

@redgiles Welcome to Mayo Clinic Connect.

First, congratulations on your 24 year thriver of breast cancer! By your words, you take your health seriously, and that is something to be proud of!

It certainly can be scary to get news like you have, about possible multiple myeloma. But before you get to that stage, there are a couple lower levels. MGUS [monoclonal gammopathy of unspecified significance] is the first level. There are several tests that can be done to see what is going on and give you a picture where you stand. This is a level where many people stay for many years, never progressing beyond that. Personally, I wouldn't automatically think the worst of jumping right to multiple myeloma. The next stage is what is called SMM [smoldering multiple myeloma] before active myeloma.

I know it can be anxiety producing. Here is an article from Mayo Clinic about multiple myeloma, but it does also talk about the lower level of MGUS and SMM, which is where you may want to focus. As a cancer thriver, you understand the need for watching your health, and I would not be truthful if I say "not to worry" because that is what we do! Take a deep breath and go one step at a time. Follow the guidelines of your medical team, ask questions of them, and of me! There are tests to eliminate what is not going on.
https://www.mayoclinic.org/diseases-conditions/multiple-myeloma/symptoms-causes/syc-20353378
Now, pull up a chair, grab a cuppa tea or coffee. Help yourself to a snack, and let's talk. What questions may I answer for you?
Ginger

@gingerw

Thanks for your quick response to my post. Very informative. Of all the symptoms on the list - I don't exhibit any of them except numbness/tingling in my feet most of the day and high levels on some of the bloodwork. I had a neuropathy test in past few years, that was negative at that time.

This condition was only discovered through routine blood work. I am hoping it is only MGUS !

What particular test/bloodwork determines if I have MGUS or MGUS/SMM ??

My endocrinologist at M D Anderson Houston wants to repeat the Quest Labs and refer me to their Myeloma dept. I have asked her to get that appointment for me. I guess they will run the lab work to determine the "stage" of this condition.

So....at this moment I am waiting for reply to my message to MD Anderson last night about referral.

Thanks again for your very informative reply. I'll post as I proceed down the "path" to diagnosis.

Jackie

@redgiles Jackie, understandably, they want to review their own labwork done on their own machines. I have labs pulled at Quest for some things, but my cancer center also does their own set [different labs, different values] so it is consistent within their own records.

I can say that MGUS is almost always the first step. The key values are watching the "M" proteins levels. And usually a bone marrow biopsy to determine if/how much involvement there is from there. Many times it is a "watch and wait" situation. In my case it was unusual to progress so fast, and I tell people that I am an overachiever, and couldn't be held to standard guidelines!
Ginger

Hi. I hope it’s ok to jump in on this thread. @redgiles i admire your strength & pro-active approach & wish you all the best.
@gingerw - my father has a (2nd) bone marrow test in 2 days. His iGg, K/L ratios & m protein (0.48) have elevated since fall. All the MM articles I’ve read list bone pain & breaks / fractures as the primary symptoms. He hasn’t had these so I’ve felt some relief. The article you posted is the first I’ve seen that also lists weight loss, fatigue , confusion & thirst as symptoms. My dad has all of these- he lost 65 pounds in the last year. His hematologist/ oncologist specifically commented last week that weight loss is rarely a precursor for MM. can you comment on this, as well as how confusion may appear with this dx? Not jumping the gun, as I realize the BM test will be telling but now it feels his symptoms may be more aligned than I initially thought, so trying to get clarity as we wait. Thank you so much.

@ognj Good Morning ! Glad you "jumped" in. Appreciate the conversation/thoughts about my newest journey. Prayers for your Dad and his continued treatment. Keep us posted.

Of the common symptoms listed......the only one I can relate to is the consistent numbness in my feet from ankle down. I haven't had weight loss (although I need to lose some pounds) or any of the others listed.

Waiting "patiently" LOL for word from MDA Myeloma team on how to proceed.

I may have mentioned, I live in Spring Branch, north of San Antonio. I still go to MDA Houston annually for mammogram and OV with Cancer Prevention team. Also have endocrinologist that does my bone density bloodwork EOY. Bloodwork from last visit 2/2022 showed high calcium level (a symptom). She suggested I stop taking my calcium supplement and repeat the blood work in 6 months. Fast forward to Aug. 30, 2022 I had my semi-annual visit with my PCP and she ordered routine blood work. Quest suggested on report that I have a "serum immunofixation" test. I had additional blood work done 9/19/2022 for this. Their IFE Interpretation was - IgG lambda monoclonal band present. PCP suggested I see a hematologist.

So, since I had already been a patient at MDA since 2006 (transferred from Clear Lake area Doctors.). I thought I would be able to get "in" much sooner than being a new patient at UT Health San Antonio MDA. Unfortunately MD Anderson and San Antonio MDA branch "systems don't MESH"; therefore, I would be considered new patient.

We are from the Houston area originally and still own a house there (our daughter lives in it), it's a no brainer to go there for testing/diagnosis.

I just happened upon these Mayo discussions and hopped in. I presume most of those chatting are Mayo patients, but situation/treatment/diagnosis are common among us.

It is so comforting to have those that have been down this path already either personally or with family member to chat with. When I was diagnosed with breast cancer at age 47 in 1998, I felt so alone as no one I knew had similar experience. But I soon found out they were there, they just weren't talking.

Enjoyed your comments about your Dad, please keep us up to date in his journey.

I was comforted immediately by @gingerw posting her thoughts right away.

Crossing my fingers, that since my foot is already in the MDA door, I can get appointment for evaluation/blood work soon.

Thanks again to @ognj and @gingerw for your comments.

Talk soon !! Jackie

@redgiles thank you for your thoughtful reply.

My parents are in NJ & have been getting testing locally. This is the first time it has escalated to potentially being more, so we’ll see where we end up for further care based on Fridays none marrow test. I stumbled on this message board as well, just about a week ago, but it’s been very helpful to read through. All the best to you.

@ognj Welcome to Mayo Clinic Connect! We're always happy to see new members post. Really, it's no bother, and we value what you have to share.

Similar to the drug interactions we see scroll across the bottom of the TV screen during a medication commercial, where we wonder how many people experience "that complication", we can look at different conditions in the same manner, I believe. Not everyone may have the same indications or combinations of symptoms in a given health issue.

If your dad has not had a complete physical examination to uncover possible reasons for his weight loss, fatigues, confusion, and so on, that would be a good start. Our bodies are miracle machines, and all the different systems have to play well together. Results of bloodwork and other tests are then evaluated together and possible concerns can be addressed. For me, a weight loss like that is a big red flag! Confusion can be as simple as the body's response to infection of some kind.

As you wait patiently for the testing to get done, and the results to be filtered back to you, how are you doing, handling this? How is your dad handling these confusing times? Ask away with any questions!
Ginger

@redgiles My left leg neuropathy started Feb 2021. After several scans/X-rays, nerve conduction studies, etc to rule out spine issues, it was determined that I have issues in my left hip related to the myeloma. Basically I have no feeling from left knee down to bottom of left foot, except for a small area on the outer edge of my foot. It is not pleasant, and I use a cane to navigate.

You'd be surprised to read the majority of members are not Mayo Clinic patients! This forum is open to everyone from all walks of life, all over the world. While you do need to sign up to be able to post a reply or question, there are multitudes of people who come here simply to read and educate themselves, and like you said, not feel alone in their health journey. I'm not a Mayo Clinic patient, but my oncologist practiced at Mayo Rochester before he moved out this way!

I'm with you on your journey.
Ginger

@gingerw thank you.
Yes, my dad has had numerous MD visits, diagnostics, hospital stays, etc since September 2021 when weight loss & fever started. Only abnormal lab at the time was Sed rate. Then we found extreme diverticulitis on a ct & thought it was “the” answer / dx. He had surgery (2 unfortunately) for colon resection in January. 2nd surgery resulted in Ileostomy. When the weight loss started again in May we were told it would come back once the Ileostomy was reversed. Unfortunately weight loss has continued & he hasn’t been strong enough for the reversal. In the meantime numerous specialists, CTs, ultrasounds, labs, bone marrow test, endoscopes, etc haven’t shown red flags. Until iGg & k/l ratios rose, m spiked & monoclonal bands presented in July….

@ognj If your dad's medical team hasn't already, I hope they will consider a group conference to figure this out, using their collective knowledge in different fields of study. A good teaching hospital, or reknown medical center, can be so helpful. Don't be afraid to advocate for your folks!
Ginger