[Eileenk]

Newly diagnosed smoldering myeloma & terrified

by Eileenk on Sat Sep 16, 2017 12:24 am

Hello!

Wow, this forum rocks! The information that I have learned here is invaluable and I truly appreciate each of you for sharing information and asking questions that I hadn’t even thought of.

I’m just at the beginning of my journey as I was diagnosed with smoldering myeloma just a few days ago at age 49. I’m generally pretty tough when it comes to powering through health issues (a few highlights: Crohn’s disease, breast cancer, pulmonary AVM, clinical HHT, primary hyper­para­thyroidism, basal cells and migraines), yet this latest diagnosis is the one that has me terrified.

This past March / April 2017 I came down with the flu and it was awful. After 7 days in bed and still feeling lousy, we discovered that I now had bacterial pneumonia, which knocked me out for another week. My husband was doing his best to keep the household together (we have two boys, 13 and 11 years old), but as we say, “the wheels were starting to come off". Lunches were forgotten, homework missing, etc.

I was exhausted and needed to get back into the swing of things and started looking at the numbers on my blood work. I had concerns with my calcium levels and my iron and ferritin and started researching. I asked my doctor to look at my PTH (parathyroid) levels, which was also high, so I was referred to an endocrinologist. He ran my DEXA and discovered I had gone from osteopenia to osteoporosis and the need for parathyroid surgery was determined. After lots of neck scans, we scheduled the surgery and they removed one adenoma on July 5.

At the same time, I had also been referred to a local hematologist / oncologist for what appeared to be iron overload. He ran a crazy amount of tests and determined my iron seemed ok for now, but he had uncovered an IgA monoclonal protein with kappa light chain and IgA serum of 1,237 mg/dL. He told me he wanted to do additional tests to rule out multiple myeloma, but believed I would end up with MGUS and he gave me a printout. I had never even heard of multiple myeloma or MGUS, but he asked if I had time to go for the skeletal xray that day. My answer was of course.

The waiting was terrible. After a few days, I was nervous about the results and called his office. He had sent me for tests the same day as our appointment, so it seemed serious, yet he didn’t call with the results. Thankfully the bones were clean, no lesions. During our call, he made references to having other “anxious” patients and in that moment I knew he wasn’t the right doctor for me. As I already had been treated at a cancer center in New York City seven years earlier, I called and got an appointment with one of their myeloma specialists.

We did the blood work, 24-hour urine, PET/CT scan, and a bone marrow biopsy. My M-spike is 1.72 g/dL (17.2 g/l), IgA is 1409, kappa-lambda ratio is 7, a clean PET/CT scan. However, sadly, my bone marrow results showed 17% in the aspirate and 30-40% in the bone marrow, landing me in the smoldering category. He also mentioned something about the flow cytometry that shows 97% bad cells which somehow ties into higher risk for progression, but at that point I was overwhelmed. I still don’t have my FISH results yet.

My husband and I have been reading as much as we can to understand what we can do to keep me from progressing. Your posts are invaluable. We have read about curcumin and liposomal vitamin C and have started both of those already. I am scheduled for an infusion of Zometa to help with my bones, yet other than that, we are in the wait and watch.

Frankly, we are pretty shocked to be smoldering. My immunoglobulin levels and M-spike didn’t seem that high, but I think the scariest thing is not knowing how long (or short) it took to get this level in my bone marrow.

I am scared about the future. We haven’t shared any of this with our boys and hope to hold off as long as we can, yet know they must sense the nervousness in the house.

We are thrilled to have found this community to share and learn.

[Pepperink]

Re: Newly diagnosed smoldering myeloma & terrified

by Pepperink on Sat Sep 16, 2017 1:16 pm

Eileen,

Well, any diagnosis of multiple myeloma is crappy. However, you did get an advantage when you were diagnosed before serious physical symptoms occurred (especially bone lesions).

I was diagnosed with Stage 3 three months ago and did not have any physical symptoms.

I feel that total trust in your doctor is the first priority, and it looks like your past experiences help you to make that judgment.

We both have another major advantage in that a whole assortment of promising treatments have been approved just in the past several years. For example, when one drug can't be tolerated (in my case it's Revlimid), there are many other treatments available.

As for telling family members, that's a tricky call. I have chosen not to tell family members (I have no children) until a major event occurs. No relatives live in my state, so I can get away with that.

My wife is keeping her family and friends updated as she sees fit.

I know you will find a ton of encouragement and reliable information on this forum.

I will look forward to your upcoming posts.

[Eileenk]

Re: Newly diagnosed smoldering myeloma & terrified

by Eileenk on Sun Sep 17, 2017 9:36 pm

Thanks, Pepperink, for your encouragement. I know this forum will be a source of great learning and support and I hope my experiences will help someone else.

I hope you trust in your doctors and that they will put you on the right path.

Peace.