How has your MGRS journey been going?

Posted by lor333 @lor333, 4 days ago

Hi, my name is Lori, and I live in Vancouver Island in the Canadian Pacific NW.
I was diagnosed with MGRS in the spring of 2022, age 63. By this time I was at stage 3A kidney disease
and was very tired.

I began a 9 month weekly chemo treatment in July of that year, with shots and pills
and it turned out to be a very rough start. I ended up needing a blood transfusion in August and in September ended up in the hospital for 3 weeks because I had a drug induced psychosis from the dexamethasone. It took them awhile to diagnose this. Was certainly a hard time and I was off the chemo drugs til December. Then I restarted the treatment without the dex.

Things went pretty good with this treatment and I finished up in August of 2023.

I'm seeing my oncologist/hematologist and nephrologist every 6 months now for check ins and still doing bloodwork every 3 months.

My light chain numbers are slowly going up again while other numbers such as my hemoglobin and GFR have shown small but good increases.

I ve not had any stem cell harvesting so far. I suspect my next treatment will be the chemo regime again.

How has your journey been going?

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

Colleen Young, Connect Director | @colleenyoung | 4 days ago

Welcome, @lor333. I'm tagging a few members like @edna68 @tdseid1961 @like2dance2 @f019521 who can share about their experiences living with MGRS.

You may also be interested in this related discussion:
- MGRS (monoclonal gammopathy of renal significance): Let's connect https://connect.mayoclinic.org/discussion/mgrs-diagnosis/

That must've been scary for you and the people around you when you experienced drug-induced psychosis. Am I understanding correctly that you are currently between treatment and not on chemo at the moment? Great picture of you mountain climbing!

tdseid1961 | @tdseid1961 | 3 days ago

It is so nice to hear from someone with MGRS I started my journey in 2022. I was 61 and shocked! I go to the Mayo Clinic in Rochester. I also have a team at home in Boise Idaho. I have don't the stem cell collection, hopefully I won't need them for a long time.
It sounds like you had a very rough road. I sure would love to stay connected as I have no one with this to communicate with.

f019521 | @f019521 | 3 days ago

Here is a follow-up to my previous post. I was diagnosed with MGRS in the fall of 2022. I was treated with CyBORD therapy from Dec 2022-June 2023. My testing looked great until late July 2023. At that time my symptoms returned (blood in urine, rising creatinine levels, swelling in lower extremities, etc.) I was enrolled in a study using Daratumumab injections, but my symptoms continued to get worse. From October-December 2023 I was hospitalized four times for a total of 30 days and was officially diagnosed with Multiple Myeloma. During that time, I was on the verge of kidney failure among other serious complications. The bridge treatment that helped me through this was plasma exchange therapy using apheresis. This helped cleanse my kidneys from the deposits that were affecting my kidney function. Also, during this time, I was treated with various chemotherapies to treat the Multiple Myeloma. By the end of December and through most of 2024 my Multiple Myeloma was well controlled with continued treatments of Daratumumab injections and an oral medication, Revlimid. To further consolidate my treatment, my hematologist recommended a Bone Marrow Transplant (BMT). At the time, I was feeling good and my testing indicated that my Multiple Myeloma was almost undetectable, but my hematologist said that it was best to undergo the BMT while I was feeling good. I started the BMT process with a week of testing to confirm that my heart and other systems were healthy enough handle the BMT process. The BMT process started with four days of shots to stimulate my bone marrow to release stem cells. My stem cells were collected for two days using apheresis. A few days after collection, I received chemotherapy to wipe out my Multiple Myeloma cells and reboot my immune system. Two days later my stem cells were infused (transplanted) back into my system. This was the time when I was most vulnerable to complications and would have to endure the chemotherapy side effects. Unfortunately, I came down with a staph infection and was hospitalized for ten days. During my hospitalization I also came down with Covid. In early October 2024, I was released and returned home to recover. To further treat the staph infection, I needed daily infusions of antibiotic for 30 days. Now the good news. My BMT was extremely successful and lab tests and bone marrow biopsy results show no sign of disease. My transplant team and hematologist couldn't be happier with my response. During 2025 I will have monthly infusions of Daratumumab as a preventative therapy. Since the BMT, I have steadily regained my strength and look forward to returning to a relatively normal life. I will be forever grateful to my Mayo medical team for their persistence and creativity dealing with such a complicated case.

tdseid1961 | @tdseid1961 | 2 days ago

It sounds like hopefully you have the hard stuff behind you. Thank you for sharing.

lor333 | @lor333 | 2 days ago

Hi, I just read your first post and realized this was the follow-up.
Glad to see there was sime good news through all of what you endured. Getting staph and covid at a time like that! You re a fighter. 👏

lor333 | @lor333 | 2 days ago

In reply to @colleenyoung "Welcome, @lor333. I'm tagging a few members like @edna68 @tdseid1961 @like2dance2 @f019521 who can share about..." + (show)

Yes, I'm currently not in treatment of any kind.
Thanks, That is Hurricane Ridge across the ocean from here in Mt Olympic National Park.

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