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Keytruda (urethral cancer): What's your experience?
Friend was diagnosed with mucinous adenocarcinoma primary to the urethra and is being treated through Stanford and UCSF. He was told that this is a very aggressive cancer. Info coming in from UCSF (after 20 biopsies) after a month gave some hope as this rare cancer mutates every 26 rounds (usual cancers 2 or 3), and that immunotherapy would give a good chance of interrupting the mutations since they are so elongated. Friend received one dose of Keytruda a month ago and had a severe hives reaction on his trunk and whole scalp peeled. Yesterday, CT Scan with contrast revealed no remaining cancer....a PET scan will be performed in 10 days at Stanford....this was only one dose of immunotherapy. Radiation was to start next week but has been put on HOLD>
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While some large vitamin store may have this, it is not yet likely. Buying online seems best, Simply google "1000 mg 95% curcuminoid with Black pepper extract". Since it seems ginger is becoming a factor in this treatment, you might look for that also. Many pharma companies are getting involved because there is money to be made. Read the ingredient label. Look for trusted sources. I use GNC. Talk to your doctors.
Thank you.
Could you share the name of the treating oncologist at Stanford? I’m attempting to gather treatment data on this orphan tumor.
What is TD1?
Yes true it had a low occurance but it happened
@cann1 I think it’s :
Type 1 diabetes (T1D) can be caused by the immunotherapy drug pembrolizumab (Keytruda). This is a very rare side effect of the drug.
My mom had her third Keytruda infusion on Tuesday. Since she has been on Keytruda her shortness of breath has worsened, very concerning to me, and her eyes are so tired looking. She told me this last treatment and the side effects are worse than the first two. I am so concerned. Please Mayo Clinic representives could help my mom. She hasn’t had a scan yet, nor have the doctors or nurse give her information concerning her immunotherapy, if it curing her cancer. My mom name is Patricia Weber, she goes to the SSM cancer center in St. Peter’s, Missouri. My mom has severe shortness of breath, please help.
Hello @tcellthewinner1. Connect is a forum of patients and caregivers with experience in these various topics. We support and help each other by sharing information. from our experiences. Here is the link for applying for an appointment at Mayo. You might have more success by asking your current doctor to submit a referral for your mom.
http://mayocl.in/1mtmR63
When my husband was on Keytruda for his bladder cancer, the oncologist was monitoring his blood values and symptoms prior to every infusion. Is your mother having this done? Extreme tiredness is a pretty common side effect, but there are serious side effects that will need intervention also. Can you contact her oncologist to discuss her symptoms? Has she discussed her symptoms with her medical team? She can certainly ask to have a break from infusions until her/your concerns are answered.
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