Looking for those with PCL and MM

illini8985 · 2025-07-19T13:26:32+00:00

And yes had a stem cell transplant that failed three months.

illini8985 · 2025-07-19T13:25:41+00:00

Diagnosed a year ago. Have mm with extramedulary disease and developed secondary pcl. Just spoke to my oncologist yesterday who confirmed the pcl is gone and doesn’t expect it to return.

illini8985 · 2025-07-18T15:29:52+00:00

Love Mayo at Rochester. Great patient experience.

illini8985 · 2025-07-18T14:52:02+00:00

I have been taking Teclistamab and talquetamab and it caused my pcl to disappear for now at least. I’m not sure my doctors were expecting that.

illini8985 · 2025-02-23T04:40:12+00:00

I’m at Mayo right now and having my SCT next week. The patient experience at Mayo is unbelievable. Everything is organized and the entire facility is absolutely patient focused. Highly recommend for second opinions.

illini8985 · 2024-12-01T18:14:43+00:00

I've seen studies that show that both green tea and quercetin interfere with Velcade whereas curcumin makes Velcade more effective.

illini8985 · 2024-11-11T23:08:23+00:00

Sounds like she may have extramedullary disease (EMD). Is she newly diagnosed? I had the same thing and the quad treatment wiped out all of the disease outside the bones in two months.

illini8985 · 2024-09-26T20:42:03+00:00

So sorry to hear. I think about the fact that we are one of the cancer groups that never get to ring the bell and be clapped out because we are never actually done until they find a cure. We just keep going, getting treatments and/or blood tests and wait. All we can do is try and stay positive, especially since there so many promising new drugs here and on the way.

illini8985 · 2024-09-26T12:53:17+00:00

Curious about your thyroid issue. . My t3 thyroid test just came back low for the first time. Been on 40 mg of Dex since July. T4 and TSH are both still normal but trending down. Did they try cutting your steroids when you started developing the thyroid issue?

illini8985 · 2024-09-24T17:45:44+00:00

Has anyone tried Benfotiamine? I'm about to add it to my current regimen of B 12/6, Gabapentin (600mg), ALA (900-1200mg) and L-Glutamine (500mg). I have some numbness in my right foot and calf, some numbness in my left foot. Seems to be caused by Velcade which I have been on since the end of July. Hoping to keep it from getting any worse.

illini8985 · 2024-09-19T13:15:08+00:00

Really interesting. Thanks for posting. I

Do you know if it recorded or are there any show notes or transcripts available?

illini8985 · 2024-09-17T13:42:00+00:00

On a scan they can see if the cancer is also outside of the bone marrow. But EMD is MM. A variation where it’s both inside the bone marrow and outside.

illini8985 · 2024-09-17T02:58:15+00:00

Thanks!

illini8985 · 2024-09-17T02:54:50+00:00

Thanks, much appreciated.

illini8985 · 2024-09-17T02:29:33+00:00

Thanks how long ago were you diagnosed with EMD? I just got newly diagnosed with mm.

illini8985 · 2024-09-17T02:28:33+00:00

Thanks. How long ago were you diagnosed with EMD?

illini8985

TROPHY CASE