Raco

hoping to get more feed back,

thanks to all who replyed. appreciate it. Yes, lets hope and pray that we all become NED 

Finished OpDivo Treatment 3/21/2019
SORRY FIRST ONE POSTED AS ANONYMOUS
 

Thank you all for your input. So, my Dr. is only talking PET scans every 4 to 5 months and My nuro dr wants a brain MRI done once a year.

I still wounder why some use PET and others use CT.   does not seem to be a pattern.

thank you Susan for the info, My second ACTH came back within normal limits 22.9, and cortisol was 11.9 seems the first draw must have been bad.

Paul, thank you for asking, Ronnie is doing well, he went through surgery and has had several radiation treatments, Face and mouth hurt alot,  and his taste buds are really off.  Hope that retrnes. Looks like he has a major SunBurn on his right cheek.

Also, I am on my 5mg a day of prednisome right now but after this weekend, I am suppose to stop all together.  I went from 20MG per day to 15MG per day for two weeks than to 10mg a day for two weeks than, 10mg one day & 5mg  the net day for 1 week.  Now this past week I have been on only 5mg day until Sunday.  Than Done. I HOPE THE PAIN DOES NOT RETURN.

Do you have any adverse symptions from being on prednisome all the time?

I to have hair loss. Started about the same time as my treatments, small dime size bald spots on back of head only. which started getting bigger and bigger, at the same time, my eye brows, mustache atarting thinning. my head finally got to the point of all the small spots starting to connect and most of my hair on the back of head fell out. everywhere else it thinned a whole lot. SO, yesterday, 10/16/2018 I got my hair removed, BUZZZ CUT.  Now you can really see the areas that had littlt ot no hair but over all I am pleased. Does not look like I have Mange anymore, just a bald head.

Its really crazy how these Meds work on  our bodies. I have alot of other symptions but they are coming and going except for Muscle bone Ache and being tired ALL the time.

Opdivo since April 5th 2018 just had my last treatment  of 26. Finished March 21st 2019

Best of luck to you.

Thank you for your reply. I see where alot of people get CT Scans more often than PET.  I got diagnosed with Melanoma on left flank and two lymphnodes with metastatic cancer.  everything removed with clear margins but I was now listed as stage 3. 

I started Opdivo April 5 th 2018 and finished March 21st 2019 (26 total) during that time, I have had 3 Brain MRI and 3 PET Scans. All came back clear. So I guess my Dr will have a plan for future visits scan etc for X amount of years……..   THis is going to be so weird not going for treatment everyother Thursday for the last year.  Crazy

you really are the best C  and I pray that you will stay NED forever

Thank you Celeste for the kind words. 

Symptions can be different for many people but my worse over the past year is my bone and joint pain which has been off the charts for several months and nothing Pain pills, motrin, advil have not worked. Sometimes it hurts so bad in my knees and hips thats its hard to even get up from a chair. 

Finally, last week at my Oncology appointment, my Dr. prescribed Methylprednisolone 4mg tabs 21 tabs. started taking Friday am, by Sat, I was able to get up without thinking about it and was only hurting a little. Also, I have had a rash for almost a year but this to is going away more and more.   I have two days left of the Methylprednisolone. I REALLY feel like a new person right now, very little to no pain. WHOOP WHOOP.  I did not know how bad it really was until  a few days ago with the pain started to go away.  My wife always says I have a High Tolorance to pain but I am hoping it will not return.

Thank you for sharing all your great knowledge and insite about Melanoma and real life stories.

Robbie