Any experience with Keytruda?

Hi Scott,
That is so great that your throat cancer is gone! However, you do have the other to deal with. That is odd that they want you to have 6 months of Keytruda before they do surgery! My husband had lung cancer. They gave him Keytruda. A side effect of Keytruda is Pancreatitis which he got and almost died. Luckily our primary care doctor, not the cancer doctor got him to the right specialist and my husband survived. My husband refused anymore Keytruda treatments which angered the cancer doctor so she refused to see him. She was mad because Keytruda treatments cost $25,000 per infusion at that time. I know because I asked the insurance company. The insurance company had just approved my husband for a year of Keytruda treatments when he refused them. Needless to say we found another cancer doctor who was very reasonable and respected my husband's wishes. My husband lived for 14 years with lung cancer. He died in 2024.

I would suggest that you research the side effects of Keytruda and there are many before you make your decision. Also you may want to find another doctor who will do what you want without the Keytruda infusions first. Keytruda is a very strong medication. It has helped people and then it's been just terrible for others. Everyone is different. Whatever decision you make remember it's your body and your money.

I would suggest that you also pray about this issue. God is there for you. You just have to ask. He made you and he can fix you! I'll say a prayer for you also.
I wish you the best.
PML

Thank you. My preference would be to just remove the tumor surgically. However, they feel that because it is a metastasis, the 6 months ensures that there are no further metastasis prior to the surgery.

Hi Scott- I'm 63, white male. My liver lesion biopsy isn't until Friday, but we're pretty sure cancer has spread to my liver from the Renal Cell Carcinoma that was surgically removed from my right kidney. If I could go back and change things, I would have had the whole kidney removed 3 years ago, when there was no evidence of spreading or anything like that. I will be getting some more info after the biopsy, and will be glad to share what's presented to me as soon as I can. My Urologist did say that the next step would likely be immunotherapy, but Keytruda wasn't specifically mentioned. I have read, that it is a good idea to get genome sequencing early after diagnosis. This apparently can help decide which therapy might be best for your body and specific cancer. Hope this helps!

@scottmcf1431 As @franklin25 stated, he has metastasis 3 years after surgery. The mindset of treatment prior to surgery, and frequently afterwards, is more common today than ever before to avoid future metastasis. As with all treatments, there are potential side effects. Everyone and every body is different. Unfortunately, treating cancer doesn't have a one size fits all solution. Keep doing your homework. Keep asking questions. Gather as much information as you need to make the best choice that works for you. Ultimately, it is your decision and your consequences of the decision. Be as informed and comfortable as possible when you decide. Make sense?

I had urothelial cancer with spread to kidney. The kidney was removed with clean margins but my oncologist (not Mayo) suggested chemo followed by keytruda. The keytruda has been a nightmare for me. No issues until around the 5 month mark, then it gave me diabetes by triggering the immune system to attack and destroy insulin-producing pancreatic beta cells. By blocking the PD-1 protein, the drug removes "brakes" on T-cells, allowing them to attack cancer, but also causing them to mistakenly attack the pancreas. A month later, my eyes became extremely inflamed and swollen, the eye doctor said they're fine and gave me drops. At the same time I was beyond fatigued, couldn't get off the couch with fatigue. I ended up in the ER and admitted. They found that Keytruda had caused it and worried it had gotten to the back of the eye; it hadn't yet but I was in the hospital 5 days on 3i different antibiotic drips and home for 10 days and still blurry vision. While in the hopital imaging found that Keytruda had destroyed my adrenal gland so I was producing no coritsol, thus the extreme fatigue. I'm now on replacement coritsone for life.

I'm sure Keytruda has done a lot of good things for people, but I stopped after all this. Just beware that it can and does impact many things. Keep alert and best of luck.

Hi all,
Thanks for your thoughts. As an update, I had the initial tumor removed surgically from my liver on January 30th, with no prior Keytruda treatment. The surgery was successful, clear margins etc. Three weeks later had a complete body CT scan that showed the cancer had metastasized to lymph nodes near my liver. Started Keytruda on March 30th. Third dose is next week. So far no side effects, fingers crossed. Next scan in June, but I’m feeling really good.

I am on my 3rd year of HPV16+ and finally got the Keytruda approval 2 months ago. I have had no other treatment at all, avoided Chemo, radiation, and surgery. Now I am on every 6 weeks and trying out subQ rather than IV. The week of my 3rd dose (prior to that dose) my tumor had reduced approx 75%. While doc is still pushing the over the top stuff, we are staying on the Keytruda path. I realize that there may be some scar tissue left internally when all is done, but that's far better than what I have read from all these experiences.

I have had zero side effects from the treatments, blood work is better than fantastic so that went to 6 wk interval also. I was looking at my insurance EOBs and I think insuance is nuts...the cost is about the same from people I've asked...so why stay with standard direction when this route is far far better.

thinking about the HPV vax after its all gone..... not sure still thinking on it

@mrichey55, your reaction to Keytruda sounds brutal. It must be such a betrayal to experience long-lasting side effects from a drug that was meant to help fight the cancer. Like you said, everyone is different. For some people, Keytruda is the right drug.

What treatment are you on now for urothelial cancer? Next steps?