possible Myeloma ? big shocking surprise !!

Posted by redgiles @redgiles, Sep 26, 2022

Just received 2nd blood work results .... Quest's 1st blood work "Interpretation" was Possible monoclonal protein (M-protein) present. Suggest serum immunofixation.

Had 2nd blood work done for this -- IMMUNOFIXATION, SERUM
IFE Interpretation -- IgG lambda monoclonal band present. Have read so much about this, my head is spinning.

PCP suggested making an appointment with Hematologist. Duhhh, of course.

History: I am 24 year breast cancer survivor. Had chemo, surgery and radiation. 24 years no issues, now this. Previous lived in Houston, moved to Hill Country (San Antonio) area in 2009. My original treatments/surgery were done in Clear Lake area and Deke Slayton Cancer Center. We moved to Midtown in 2011 and transferred my continuing care (not an easy task !!) to M D Anderson/Houston. I continue to have my annual mammogram & OV at MDA Houston as well as seeing an endocrinologist for bone density/blood work at MDA Houston.

There is a UT Health MD Anderson in San Antonio that has a few specialists in hematology/oncology. I have sent all the blood work results to MD Anderson Houston for their opinion on how to proceed next. Asked for referral to specialists in SA. If necessary, will go to Houston and have tests/treatment if necessary.

I am at the beginning of this adventure. Would love some feedback from others with similar diagnosis.

This appears to run from MGUS to serious situation. Just got 2nd blood work back yesterday, so I am just at beginning of this journey.

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

ognj | @ognj | Sep 28, 2022

In reply to @gingerw "@ognj If your dad's medical team hasn't already, I hope they will consider a group conference..." + (show)

@gingerw thank you- great input!
We’re getting closer & at a good (local) teaching hospital.

redgiles | @redgiles | Sep 30, 2022

In reply to @gingerw "@redgiles My left leg neuropathy started Feb 2021. After several scans/X-rays, nerve conduction studies, etc to..." + (show)

@gingerw This morning I sent a message to my MDA Endocrinologist PA -- asking what to expect going forward. Would the myeloma team contact me soon. She answered that my appointment would show up in my chart. She said she would contact them to see if they could hurry it along.

Jackiae

redgiles | @redgiles | Oct 1, 2022

@gingerw @ognj

Success !! Late yesterday afternoon I get email from MDA. Went to "My Chart" and there was consultation appt. for Nov. 3 @ 11am with Dr. Neeraj Saini of Lymphoma & Myeloma Center. Of course, I would have liked an appointment sooner, but with MDA you are lucky to get an appt. so soon. So, I'll will keep on with my regular activities and head to Houston a few days ahead of Nov. 3rd appt.

Ginger, Volunteer Mentor | @gingerw | Oct 1, 2022

In reply to @redgiles "@gingerw @ognj Success !! Late yesterday afternoon I get email from MDA. Went to "My Chart"..." + (show)

@redgiles Yeah! If it fits your plans, perhaps you can ask them to place you on a cancellation list, in case an opening comes up before then? I know that it sometimes doesn't work out like that, but you never know! My husband had scheduled a dermatology appointment for a spot that I felt needed to be addressed, but it was out into December. They just called him two days ago, and gave him a cancellation opening for this coming Monday!

Deep breath for you, now. Chin up, do something for yourself this weekend. What do you think that might be?
Ginger

redgiles | @redgiles | Oct 1, 2022

@gingerw
Ginger:

Thanks for the reminder about cancellation list. Will do that next week. If a last minute reservation opened up, I could fly to Houston; otherwise the drive from Spring Branch to MDA is about 3 1/2 hours.

Today is the Susan G Komen Race for the Cure in Houston. I get my Survivor T-Shirt every year. In fact, it arrived in mail today !

I have good friend/neighbor - 3 doors down. We walk together most every morning around 6-6:30am. So we walked this morning ..... nice cool 53 degrees. Somewhere between 2.5 mi - 3 mi

My husband is off visiting friends in Blanco, so I'm treating myself to nice quiet day. Listening to an audio book. Enjoying the sunny day.

Thanks !
Jackie

ognj | @ognj | Oct 1, 2022

In reply to @redgiles "@gingerw Ginger: Thanks for the reminder about cancellation list. Will do that next week. If a..." + (show)

@gingerw great news!!!

Ginger, Volunteer Mentor | @gingerw | Oct 2, 2022

In reply to @redgiles "@gingerw Ginger: Thanks for the reminder about cancellation list. Will do that next week. If a..." + (show)

@redgiles Jackie, wear that shirt with pride! We have several shirts we get at different volunteer events we work at. They are great reminders to everyone that there are so many of us who have overcome so much.

A walk that long would be heaven for me, now. I used to be able to do that. A mile is about my limit at the moment. Hoping as I feel better the longer I am on dialysis, [Yep, I am on active treatment for myeloma plus on kidney dialysis, unrelated to myeloma] That will be a good goal!
Ginger

donyork | @donyork | Oct 6, 2022

I was diagnosed with MGUS around five years ago. Have just been having lab work done every three months. I am scheduled for my third bone marrow soon. My anemia is getting really bad.doctor is probably going to put me on medication. I only have little neuropathy. I have stage three kidney disease also. Has been stable for a long time. I am tired all the time. Will be 83 in December.

Ginger, Volunteer Mentor | @gingerw | Oct 6, 2022

In reply to @donyork "I was diagnosed with MGUS around five years ago. Have just been having lab work done..." + (show)

@donyork Welcome to Mayo Clinic Connect. It's nice to hear you have been having lab work every three months and it has worked for your monitoring of MGUS. You are in the majority, so many go for years with no progression of disease.

One of the things that was important to me was the need to be careful with my diet. While many doctors don't seem to ascribe to following good diet habits with kidney disease, limiting processed foods, eating fruits and vegetables that have low potassium/phosphorous/calcium, eating quality protein, keeping well-hydrated play roles. Not only do you feel better, but you help your kidneys out, too.

Like you, I am a chronic kidney patient, now on dialysis. But being aware of your own health, and doing all you can for yourself, gives you a step ahead, and makes you feel good physically and mentally! Been there, done that.

Here is a link to a discussion on recipes you can peruse: https://connect.mayoclinic.org/discussion/my-ckd3-meals/
And if you need more information about Stage 3 kidney disease, there are several useful discussion in the kidney and bladder group: https://connect.mayoclinic.org/group/kidney-conditions/

Any questions, please ask away!
Ginger

jjtex | @jjtex | Oct 14, 2022

In reply to @redgiles "@gingerw Thanks for your quick response to my post. Very informative. Of all the symptoms on..." + (show)

Hi Jackie,

Biggest congratulations and much admiration on two decades of crushing breast cancer.

I just saw this but want to let you know I live in Spring, and am happy to help in ANY way when you come to Houston and MDA.

I was treated for Stage IV colon cancer at MDA (but my surgeons consulted with Mayo docs on my messed-up labs!), and I was on a surgical stepdown floor with some advanced breast cancer patients. This was due to COVID crowding, but I’m forever grateful because we all helped each other through some rough things.