Mat.in.Brooklyn

Hi there,
Did your dr. test you for ACTH hormone? Both low thyroid and low adrenal gland hormone are often due to pituitary gland inflammation from treatment-not uncommon.
I suffered extreme fatigue after my third ipi/nivo treatment and low adrenal gland hormone was the culprit. Along with synthroid they prescribed hydocortisone pills. (Cortef)
I have close to normal energy levels from taking 20mg (4 pills of 5mg) daily.
Best wishes,
Mat

Hi there.

I had a ALND in December 2018. I had the exact same thing. It would also spiral down the drainage tube. Not sure what it is but it didn’t concern my doctor when they took out the tube.
I wish your husband a speedy recovery.

Mat

Hi Lea. I’m sorry to hear that your father is going through this. The Ipi/Nivo combo can be tough but there are many people here who have benefited including me. I am stage IV and had 4 brain mets and a ALND and I am currently NED. Your father’s side effects sound very familiar and the loss of function can be disheartening. Barb has offered some good questions. Your dad’s difficulty getting up the stairs and his lack of energy are typical but if they are pronounced you may want to check his ACTH hormone. It’s usually not included in the routine blood work but a test will show if his hormone is low and therefore his adrenal function is compromised. On the Ipi I felt like I was wearing a concrete suit.
I understand the frustration in reduced activity- I have a dog walking business in NYC and walk 10 miles a day- I couldn’t on Ipi but once we moved on to the Nivo phase I was able to get back to it.
Hang in there, things CAN get better. Mat

Hi. I'm sorry your husband has to deal with this. I live in NYC and am currently being treated for Stage IV melanoma under Dr. Jeffrey Weber at Perlmutter Cancer Center NYU Langone. They have an excellent melanoma research and treatment program. Dr. Weber is one of the big dogs when it comes to melanoma treatment. Dr. Pavlak and Dr. Wilson are also excellent and treat there as well. The main thing is to see a melanoma specialist who can guide you and stop this in it's tracks! I wish you bot the best, Mat.

Hi Fi.

I was diagnosed with Stage IV/brain mets in December 2017 and , like you, went with the ipi/nivo combo. I was able to have all 4 treatments and gained some endocrine issues (manageable) and vitiligo. I had a good response after two treatments and six months later a clean MRI. The ipi/nivo combo worked wonders for me and I wouldn't hesitate knowing what I know now. I wish you the best and I hope it takes care of the rest!

Back on the Opdivo train! Good luck with #6 Mike.

Hi there. I was diagnosed with Stage IV brain mets in December 2017. I had no symptoms, just a lymph node in my underarm that was swollen and, after growing, was biopsied and showed melanoma. Further testing revealed 4 brain mets. I don't think you will necessarily find a definitive answer. If you are concerned, you should find a melanoma specialist to address whatever symptoms Jim is experiencing. Wishing you the best, Mat.

Hi Jessica.

If your gut is telling you to get a second opinion then it seems like a wise idea at least for peace of mind. I am at NYU as well (Dr. Weber). I'm wondering if there is a peer review and he wouldn't be available to take a look. Either way, it is an excellent idea.

Best to you,

Mat.

 

Hi Mike.

Yeah, I have the same, lower back, hips, knees, ankles. Dr. Weber at NYU told me that's the "dirty little secret" and it will get better after treatment. He told me to take Advil, which surprised me, but I have to admit it has helped somewhat-when I remember to take it.  I feel like i'm getting enough drugs in my system, reluctant to take more.

Hey Mike.

I don't post much on here but I have been following your treatment and am always impressed with your attitude.

I'm happy that you are starting the ipi/nivo treatment. After two treatments my scans showed brain mets had gone from 4 to 3 and after finishing the next two and having a few nivo treatments I now have two "faintly punctate" lesions.

I hope you get some good news as well to point the way and that this stuff works well for you!

Best,

Mat.

Hi Steve.

I am currently on the once every 4 weeks Opdivo treatment after finishing the 12 week ipi/nivo combo in February. They had me on the 2 week treatment and then we switched to 4. I haven't noticed a significant difference other than what feels like a more pronounced fatigue for a couple of days after the infusion.

As to side effects, the ipi/nivo treatment did some endocrine damage. I am now on a synthroid and a hydro cortisone replacement dose. I also developed vitiligo and my beard turned white. I know that the ipilimumab had a lot to do with all. Now that I am on Opdivo only, I notice a bit of joint pain.

All in all it's all manageable, and once the endocrinologist ( yep, adding to the list of specialists) dialed in the meds, I feel pretty good.

I wish you the best in your treatment. The side effects are just an obstacle to the ultimate goal.

Mat.