Keytruda Maintenance Therapy: Sharing Experiences

Was your tumor MMR deficient?

Hello @val64,
Yes, my tumor was dMMR, stage IVB. Surgery removed most of the tumor, with near-complete resection. Thank you for asking.

Note to other patients: dMMR is a molecular biomarker indicating a deficiency in the body's ability to repair DNA mismatches, often associated with certain cancers, including endometrial, colorectal, and ovarian cancers. It's essential to clarify the meaning for those who might be unfamiliar.

Kind regards
CC

To continue CC's comment, MMR deficiency is associated with an excellent response to immune checkpoint inhibitors such as Keytruda.

I'm glad you're one of the success stories.

I can't say much here otherwise because carboplatin, paclitaxel, and Keytruda only maintained stable disease for me. I refused Keytruda maintenance after I had had the maximum number of chemo cycles because I was pretty sure it was doing absolutely nothing for me, just making a lot of money for Merck. My tumor is MMR proficient. I'm currently on a clinical trial, but if I stop that at some point, I think I'm going to have to go on Lenvima plus Keytruda, even though I don't think Keytruda works for me. Merck has done a good job of making Keytruda the standard of care in a lot of situations.

One question I've never heard the answer to is if you quit Keytruda now and, God forbid, the cancer recurs, would Keytruda work just as well the second time? The tumor would still be dMMR. But of course that's something you'd rather not learn through your own experience.

Are you actually paying a significant amount for the Keytruda or just watching the crazy bills go by? I was only paying a nominal co-pay for each appointment. The hospital was sending the insurance co. a $45,000 bill, and the insurance co. was paying them ~$15,000. Crazy. But I can't really complain.

@val64

Hello Val, thank you for sharing your journey and insights! I'm grateful to be among the success stories with Keytruda, and I'm thrilled to hear your treatment is progressing well despite being pMMR.

Regarding your question, my oncologist's justification for keeping me on Keytruda for two years is to prevent it from coming back. However, online research mentioned that if I stop Keytruda and the cancer recurs, I may be able to restart Keytruda, as the tumor's dMMR status remains unchanged. However, I'm unsure about the efficacy of re-treatment. Your concern is valid, and I'd love to hear more about others' experiences.

It's fascinating (and concerning) how Keytruda has become a standard of care, often driven by pharmaceutical interests. Your decision to refuse maintenance Keytruda and explore alternative options shows your proactive approach to your care. Would you be willing to share some details about the trial, like what treatment you're receiving and how it's going so far? I respect your privacy, so you don't have to do so.

Please keep sharing your journey and valuable perspectives! We're learning from each other, and our experiences can help shape future treatment decisions.

Kind regards,
Carol

@val64

My apology for being misleading about the cost. My coinsurance payment and copayments gave been almost $20k since last October. Each treatment is $47,711. Thankfully, my insurance has been paying the bulk of it minus the my portion mentioned above.

I'm fine with sharing privacy-wise; my reluctance is because my story is a downer.

I knew before I hit the maximum number of chemo cycles that it wasn't working very well and that I wanted to try a clinical trial. So I had a biopsy done to get the tumor sequenced. I should have done this earlier, although the foot-dragging hospital, which took a month to send the specimen to the sequencing company, didn't help.

This showed a mutation in a gene called ATM, among others. ATM-mutant tumors are sometimes sensitive to drugs that inhibit a functionally related protein called ATR. This is known because something like eight different ATR inhibitors have gone into clinical trials over the last 10 years. There have been complete responses for high grade endometrial cancers (like mine) with ATM mutations. But there have been no phase 3 trials, and definitely no FDA approvals for any of these drugs, which suggests a problem with this class of drugs. But I plowed ahead. And learned by personal experience what the problem is.

Two weeks into the trial, I landed in the hospital for 4 days with 0 neutrophils, a high fever, severe anemia, and feeling dreadful. The infamous neutropenic fever. I needed a transfusion. But I felt like it had worked on the cancer, and the CA125 and later CT scan suggest there was probably a~50% reduction in the tumors over this period.

So after an extra week off and with a ~50% dose reduction, I started the second cycle. That has gone much better in one sense; I don't feel too bad and have neutrophils. But my suspicion is that it's no longer working on the cancer either. I'll see the CA125 on Monday. So I suspect that the problem with these drugs is that there is no dose at which they're both safe and effective. You can have one or the other.

If I don't see the numbers going down (not just remaining stable), I'm going to quit the trial and give Lenvima/Keytruda a try. But that's basically accepting that there's zero chance this will end well (which I knew intellectually already but hadn't really accepted.)

Sorry for the TMI.

I was just wondering if the cost to you was a factor in your decision. Because it wasn't for me. I paid the same amount (65$ copay) for an infusion whether or not it included Keytruda. But I did not like the thought that there was a large profit being made from giving me a useless treatment. (And I'm not sure to what extent my doctor/hospital have a conflict of interest here.)

I know I'm being negative about Keytruda for me, but if I were in your situation, I would stay on it as long as they'd let me, unless I was having side effects.

@val64

Thank you for sharing your update with me. Your courage and resilience inspire me. I'm here for you, and I care. Whatever you decide, I'll support you. Your honesty helps me understand your journey better. Stay positive and do feel free to give Keytruda and Lenvina a try, administered every six weeks. The FDA approved it last March for endomentrial cancer. Of course, I'm not a doctor, but although it worked for me so far, there must be a reason why it's becoming standard.
Without the carbo and taxol, it take less of a toll on your body, I pray.

I also believe in property nutrition to help replenish or bone marrow and cells.

So, during treatment, I took mykind for women daily vitamin, liquid flaxseed oil, a full tablespoon or two, and sprinkled via seeds on my cereal oatmeal. I drank herbal teas ginger, lemon, and chamomile was my go-to at night just before bedtime to help me relax and at least get six hours sleeps.

You might also enjoy reading the book "Outlive" by Dr. Robert Nagourney, who offers guidance on combining conventional and holistic approaches to enhance cancer treatment, manage side effects, and improve overall well-being.

It offers valuable insights and strategies to:

1. Enhance treatment outcomes;
2. Manage side effects;
3. Boost immune function;
4. Promote overall wellness;
5. Improve quality of life.

Key takeaways include:

1. Personalized medicine approaches;
2. Nutritional and lifestyle interventions;
3. Mind-body connections;
4. Evidence-based complementary therapies;
5. Navigating the healthcare system.

Sending you strength, positive thoughts, and a big virtual hug.

@val64

Cost isn't my main concern, but thank you for asking! I'm focused on deciding whether to continue treatment now that I'm cancer-free, considering benefits, side effects, and long-term adverse side effects. For example, the longer I'm on, the more toxic it is and the risk factor that I could also die suddenly. I'm grateful for your valuables insight and openness! Stay well. 💞