topcat2017

I have Desmoplastic Neurotropic Melanoma that has metastasized into the Alveolar nerve in my jaw.  I was on Keytruda for a year and quit because of the side effects.  Nearly all of my endocrine system has failed and I experience chronic fatigue daily.  I assume that most of it is adrenal related since it got a lot better after starting on Cortisone about 6 months ago.  The fatigue has now returned but without a lot of the fever/chills/sweats that I was having before I started on the Cortisone when I tested for NO Cortisol in my system, along with NO testosterone, or Thyroid hormones.  It's amazing that I was alive I think.  I am now beginning the search for a really good endocrinologist who can figure out why I feel so bad.  It can't be that complicated when there are so many clues and missing compounds.  Stress and anxiety are by far the strongest triggers for my symptoms, which would point to Adrenal issues still.  If anyone knows a great Endo in the Bay Area, I'm all ears.  Thanks in advance and God bless you all.  

I have Desmoplastic Neurotropic Melanoma that has metastasized into the Alveolar nerve in my jaw.  I was on Keytruda for a year and quit because of the side effects.  Nearly all of my endocrine system has failed and I experience chronic fatigue daily.  I assume that most of it is adrenal related since it got a lot better after starting on Cortisone about 6 months ago.  The fatigue has now returned but without a lot of the fever/chills/sweats that I was having before I started on the Cortisone when I tested for NO Cortisol in my system, along with NO testosterone, or Thyroid hormones.  It's amazing that I was alive I think.  I am now beginning the search for a really good endocrinologist who can figure out why I feel so bad.  It can't be that complicated when there are so many clues and missing compounds.  Stress and anxiety are by far the strongest triggers for my symptoms, which would point to Adrenal issues still.  If anyone knows a great Endo in the Bay Area, I'm all ears.  Thanks in advance and God bless you all.  

All of these posts sound so familiar.  I received Keytruda for a year and though I only had a partial response, it slowed my tumor enough to keep me alive…still.  I'm told that I'm the poster boy for side effects.  I had them all.  Now, I'm battling the side effects of the drug more than my cancer.  Keytruda shut down my pituitary, thyroid, adrenals, gonads, and everything else you can imagine.  I have not been able to regulate any of these issues lately after feeling pretty good for about six months.  I constantly feel like I've got the flu….with a hangover thrown in.  Though most of my worst symptoms seem to have been caused by the adrenal insufficiency, it's a mystery to me now.  I spend most of my life in bed and I'm normally a super healthy, strong, hard working individual.  I have been reduced to a sick patient who can barely work. I am taking Cortisone for the adrenal problems, Armour Thyroid for that problem, and I get Testosterone injections every two weeks to help with that.  I assume that there are another hundred things that I don't have, that I need to feel somewhat normal but I don't have the doctors who will spend the brain power to try and figure it out.  I'd really like to know if there is any information about the side effects caused by Keytruda and whether they are permanent or not.  I have a client who works for Merck and I've asked her to see if she can find out anything there in the Keytruda department with regard to that and even they don't seem to have any answers.  I was ok for about a year and just took the fatigue in stride, hitting the sack when I needed rest.  I was feeling good a majority of the time and usually had four or five days a week where I felt just fine.  I was even in the gym working out for an hour a day.  All that is impossible now.  It's flipped around now, where I'm spending five days a week in bed and two days up.  The quality of those two days isn't even very good.  I can work for an hour or two and that's about it.