ThinkingPositive

Hi luberhill, melanoma can be so sneaky like that. I’m sorry you’re dealing with it again. I didn’t realize that genetic testing changes the staging. Hard to wait, best wishes…Cindy

Hi M,
My dermatologist also has a pathologist on staff. In the last year, lesions were identified (BCC and moderate atypical) and I was referred to the university where a repeat of the pathology and treatment was done. It was right on.
Best wishes!
Cindy

Great news Bill! If I might ask, how long is surveillance? I had a complete response and stopped pembro 8 months ago and get CT scans every 3 months.
Cindy

Hi Annette, you’ll want your doctor to look at that. It does sound like blood blister though.
Cindy

Hi Karen Sue,
I’m sorry you are dealing with side effects to treatment. It is unknown how long the diarrhea will last after triggered by Keytruda. Thankfully, melanoma survivors are now living because of immunotherapy (Yay)! However, the side effects from treatment are challenging. My oncologist is seeing diarrhea as a side effect but no answers as to how long we have to deal with it.

I have dealt with diarrhea and nausea for 7 months triggered by Keytruda (and after my last infusion) and have tried many remedies with did nothing (BRAT diet, carob powder, pectin powder, eliminating coffee, probiotics). Imodium is tricky, because too much gives me constipation. So for now, I eat what I want, generally a plant-based diet which has lots of fiber. A year ago I had a routine colonoscopy which showed a beautiful colon, so my onc did not recommend a colonoscopy for now, as she thought the findings would be inflammation, which she said we already know.

Here is my intuition: Even off Keytruda for 7 months, I feel my body is still in an inflammatory state which I hope means I am still fighting off the cancer. While no cancer is seen on my scans, the body might be fighting on a cellular level, and in fact, it’s documented that immunotherapy keeps working after immunotherapy is finished, but for how long is unknown. Maybe the cancer tries to come back and my T cells remember and activate a defense again.

I do hope our guts settle down, and one day we can report when this side effect disappears.
Cindy K.

Daisy you are such a pioneer. I really wished TIL worked for you and I’m sorry for your disappointment not to mention the suffering that went along with the treatment.
Hugs to you as you decide the next step.
Cindy

Hi Skip,
Melanoma can look different than the classic poster on the wall of the exam room. Also, there are so many different kinds of lesions, many benign. So, two more days to wait for biopsy results! In the mean time, breathe! We can get ourselves worked up when facing the unknown. You could also see your dentist about the jaw pain and the lymph nodes in the neck.
Best wishes for a good outcome, Cindy

Dear Sister,
Congratulations to your sister and your family! Immunotherapy has made such a difference to many of us.
Best,
Cindy
1 year NED

Hi Anxietyallday,
I agree with Celeste. Also, I had Covid in November 2021 while on pembro (stage 4) and I continued to have great response to the immunotherapy. Now NED for one year!!!
Have a good weekend!

PS I don’t have my smell back yet but I intend to get it back:)
Cindy

Great news Affinity! I wish you the best going forward too!!!

Hi Adam, I reached NED after 10 months on pembro and my onc said I need to stay on for 18 months minimum to 24 months max. I jumped off at 18 months with next CT scan in July! So far, 4 months since last infusion and getting my energy back.

Wishing you well!
Cindy

Hi Kimbo,
Ed gave a great response and I’ll chime in with my experience. I was on Keytruda for 18 months and experienced several grade 1 adverse events, thankfully not at the same time. After every 6 week infusion, there was a “bloom” of symptoms. Sometimes it was a rash, itchiness, nausea, or joint pain. Always fatigue and a feeling my body was 20 years older than it is. My provider assured me the side effects are treatable and I was on low dose prednisone 3x. After my last infusion 4 months ago, I developed diarrhea and currently need to take Imodium prn to bulk up the stool.

Through the whole ordeal, I looked normal and acquaintances did not know I have cancer. I have my people I talk to about it and further discussion with other people seemed draining and non-productive. Today, 4 months after my last infusion, the joint pain has decreased to a 2/10 and I feel stronger every day.

I dare say I felt quite old and arthritic on Keytruda, not really the ideal I pictured for myself at age 66 and newly retired, but now as Keytruda clears my system, I feel good and very glad to live cancer free!

Good luck, and post as you need to for support!
Cindy K (11 months NED)!

That’s great news Steve! Also, good reminder to stay on track with derm visits. Sorry to hear about another melanoma! Here is an article on new primary melanoma lesions after immunotherapy. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7495326/

I had a WLE two weeks ago for a moderate atypical nevus, and don’t like the two inch incision, but do appreciate the thoroughness of my dermatologist.

Have a great day! Cindy

Best wishes on a great scan Greg!
Cindy

Hi Keisha,
In addition to the others advice, make sure your name is listed as a contact at all his doctors. That way, now and when you move, you can have access to his patient portals and speak to clinical staff .
I had a lot of that monitoring my dad’s appointments. But that’s what we do for family and loved ones.
Best, Cindy