possible Myeloma ? big shocking surprise !!

Jen:

Good to hear from you. I now live north of San Antonio in Spring Branch.

We still have a home in Houston, near Hobby Airport. Hop, skip and jump to MDA.

Your Mom might know of one of my good friends ..... retired Astronaut - Anna Lee Fisher.
She was in the first group of women Astronauts (1978). She flew as Mission Specialist on STS-51-A in 1984. First Mother in Space. She retired in 2018. Met her about 35 years ago. Our daughters were in the same gymnastics class.

Jackie Geist

I was also given a diagnosis of MGUS. This was about nine months ago shortly before my husband died. I was in such a stupor I certainly didn't respond to this, nor did I understand it. At this point I didn't care. But I did keep up with my two blood draws. Mines a little different from yours some thing about the CLL, and a few other things I don't understand. I'm praying for you to have a good outcome for what you are going through. I seem to be in a holding pattern, so I guess it's good.
I had cancer diagnosis July 2012, which I had surgery right away and then went to treatment chemo and radiation. I wish I had tried to find another way around radiation. This was kind of rough on me, and I came away with some bad side effects. But I'm still here! Quality of life is not what I would like it to be but I'm still doing pretty good in spite of it all!

I'm also a 3b-stage cancer survivor of 10 years. With the diagnosis of MGUS. I've had a bone marrow biopsy and not have developed MM. just in a holding pattern for watching in case of development. It's been about 7-9 months since the diagnosis and am doing as well as can be expected.
What foods would be best to eat to prevent MM? Thanks 😊

@red53 I am not aware of specific foods to prevent MM. Following a general healthy diet, moderate exercise plan, and not dwelling on the future works for many. The vast majority of people do not advance beyond MGUS, and for others it is a very slow advancement. Staying on top of your situation will go a long way to easing concerns.
Ginger

Donyork, I was told by an oncologist/hematologist about 7 years ago that I "could not have bone marrow or any other such cancers because they are just too rare". Today we discovered a series of new bone lesions on my skull, inner mouth and pelvis. Say a word of thanks to your supporters, oncologists, etc for their words to keep you going. My largest spot is just above my left eye on the hairline, about the size of a 50-cent piece. And another two groups of 6 and 8 smaller spots, and about 200 Torres del Muir over the rest of my head and shoulders, down to my crotch. I will be 83 in April, tired all the time, mouth full of tooth and gum pain with 6 T-M in lower mouth, and a splitting area of my upper mouth. COVT, LGMDr23, colorectal dx, Chronic leukemias and anemias, Ankylosing spondylitis, etc. My PCP is not ambitious enough to help me. oldkarl

https://www.facebook.com/photo?fbid=488680226637801&set=pb.100064874824712.-2207520000. Please call this number to find your nearest qualified Multiple Myeloma specialist. Ask the person who answers for as much help as they can give. I am assuming that you will need help getting there and they will need as much records of your results as possible. Those skull lesions and amenias are very important. Please keep us dated. I wish you all the help possible. They need to make an urgent referral.

Red, you might be interested in this discussion:
- What’s the science on diet and MGUS/SMM? https://connect.mayoclinic.org/discussion/whats-the-science-on-diet-and-mgussmm/

Red, I am seen at CARTI in Little Rock Arkansas. My oncologist/hematologist was unimpressed by the theories which advance the idea that there are spices and/or foods that will slow or stop the progression of MGUS, stating that there is insufficient data to support this.
My general philosophy is not to worry about things I can’t control. I do believe that a healthy diet contributes to overall good health and I think that is supported by data…of course that keeps changing.
I try to watch my weight (sometimes I watch it going in the wrong direction !) , exercise irregularly. If you avoid the stuff we know is toxic, that can’t hurt and will better prepare you to fight off any physical challenge.
I have type 2 diabetes so I actively work on reducing my A1C.
This wait-and-see business is maddening, but there are things we can do to optimize our health and our ability to fend off disease. Everything that I have read about MGUS is that patients mostly die of something else besides MM. Optimizing our overall health should be our focus. At least that’s my perspective. We had quite a discussion on this in another thread and I decided to stay the course.
Glad you found us. Sorry you share our focus.
Patty

@gingerw -- Hey Ginger !! Checking in ..... my endocrinologist PA at MDA Houston pushed through and got me a consultation appointment with Lymphoma/Myeloma Dept. for 11/3/22 @ 11am with Dr. Neeraj Saini !! We drove in from our home north of San Antonio the day before. We are staying at our other house near Hobby Airport. My husband (Kurt) went with me to appt. Dr. Saini very easy going, clear and concise in conversation. After our discussion, I went to lab and had many vials of blood taken. He also set up appointment for tomorrow - Tuesday, 11/8/22 @ 10am for X-Ray of bones. Also was sent home with items needed for 24 hr urine collection, which I have done and will return to lab before X-Rays. The bloodwork results started hitting "My Chart" before we left the hospital. Lots of line entries of results. Two other doctors made notes about certain lines. Dr. Saini wants to do bloodwork every 3 months. I expect to hear from Dr. after results come in from Urine and X-Rays. We are headed back home on Thursday 11/10, I have a haircut scheduled in New Braunfels. Rescheduled from 11/2 as I was headed to Houston. Hope all is well with you. Jackie

@redgiles My apologies for not getting back to you. This post missed my radar. Shame on me! So glad you got the consultation appointment and now that a bit of time has passed, what have you found out? Yep, there are many blood tests run, it seems like each one takes different tubes, doesn't it!?

It can be a pretty nervous time while we wait for complete information, and seeing additional notes on your chart may trigger a reaction of "oh, no! why are they commenting?" I am here for you, and will definitely support you through whatever is said. Bloodwork every three months is fairly normal. While that was the protocol for me before starting chemo, I now do it every month at the cancer center. Plus bloodwork for the kidney stuff.

Please let me know how you are doing!
Ginger