[lori_j]

Plasmacytoma & high-risk myeloma with del17 at age 42

by lori_j on Fri Sep 25, 2020 8:52 pm

A big hug and thank you to everyone who’s shared their myeloma stories. I’ve been a long-time forum lurker and your paths helped me a ton when I needed guidance. Every multiple myeloma patient has a different journey, and mine definitely hasn’t been usual. My lengthy recap below is the short version.

I was diagnosed with multiple myeloma in 2017 after my right arm broke putting my bag up into the overhead compartment while boarding a plane to Iceland. I ended up staying on the plane and after landing in Reykjavik, spent the day in the ER. At the age of 42, this was my very first visit to a hospital.

After returning home from a pleasant, yet painful holiday, it took a few scans and a couple bone biopsies to learn I had a huge plasmacytoma in my humerus. My blood work was normal and didn’t show any of the traditional myelomaindicators, except my kappa light chains. At the time of my diagnosis, my kappa light chains were 31 mg/L, just outside the normal range, but not bonkers.

I finally had surgery to remove the plasmacytoma and get a post nailed into my humerus. Unfortunately, the plasmacytoma’s cytogenetics had all the worst high-risk mutations for multiple myeloma, including del17. So while I didn’t have an M-spike or any other traditional indicators, the bone involvement, slightly elevated kappa light chains, and high-risk cytogenetic status put me in the multiple myeloma club.

I started radiation for the plasmacytoma. And with a high-risk status, my initial treatment was Kyprolis, Revlimid, and dexamethasone. I tolerated Kyprolis fine. But 25 mg of Revlimid was too much for my liver. The first week at 25 mg my ALT was over 600 U/L. After a drug holiday to let my liver recover, I re-started Revlimid at 10 mg and my liver numbers would fluctuate, but still safe. Dex elevated my blood pressure like crazy, so we brought down the dose.

I live super close to the hospital, so I decided to do my autologous stem cell transplant (ASCT) as an outpatient. Incredibly, I never became nauseous, but did have diarrhea, passed out one time because of low blood pressure, and lost my appetite.

On Day 9, I developed a neutropenic fever and had to be admitted to the hospital for a couple of days. The antibiotics were the worst (yuck!). The care I received, however, was outstanding. I began to lose my hair, and my nurse was kind enough to shave my head. I was so glad we didn’t have to figure this out at home. I was released from the hospital on Day 12 when my blood counts recovered. It’s not a speed record, but I did pretty well.

A couple weeks later, I returned to normal. But then around Day 50 I had a pain in my belly and my ALT was over 900 U/L. I ended up back in the hospital with an inflamed gallbladder. Since I was still immune compromised and considered a stem cell transplant patient, I was luckily admitted back to the stem cell transplant ward. I was in the hospital for over a week waiting for surgery (longer than my transplant!).

As I understand it, it isn't completely uncommon for stem cell transplant patients’ gallbladders to become inflamed. One nurse practitioner mentioned the treatment with melphalan and all those antibiotics (yuck!) really throws our microbiomes for a loop, but who knows what could have triggered my gallbladder to get so angry.

I returned to work around Day 90. But soon after, I started to experience numbness and tingling in my right fingers. The neuropathy grew to my whole hand. Several scans, tests, and specialists later, it was determined I had suffered nerve damage to my median nerve from radiation treat­ment a year earlier. It's my understand that this is not common.

The neurologist I saw couldn’t help much, and there’s no treatment except physical therapy. In fact, when I emailed her office for more info, I was sent the same article I found on the Internet copied and pasted back to me: “Radiation-induced peripheral neuropathy is a rare chronic handicap that's progressive and usually irreversible." Oh great.

I started physical therapy, but because this type of ‘injury’ is so uncommon, it took a long time to find a therapist I liked who actually helped. Two years later, the sensitivity in my fingers is 99% back to normal, and the tingling neuropathy in my hand comes on only when I’m using my arm in a strenuous way for a bit. I will take this as a win when confronted with something that’s rare, progressive, and irreversible!

Last year, I developed the common gastrointestinal issues from Revlimid and I take a daily packet of cholestyramine (Prevalite) first thing in the morning to manage.

I’m still on Revlimid maintenance therapy. Because I didn’t have the regular multiple myeloma indicators, we monitor my kappa light chains and bone scans. My last bone marrow biopsy indicated I'm minimal residual disease (MRD) negative and my last bone scan was also negative. My kappa light chains remain in the normal range. All positive so far considering del17 realities.

As many of us find with our multiple myeloma adventures, I focus on what I can control and on what is the most important. And I thankfully discovered an incredible support system: my friends, family, doctors, nurses and co-workers helped me more than I could ever thank them.

Wishing you all wellness.