KAF

HI Kathy

im sorry to hear of your diagnosis.  When I was diagnosed stage 4 in may 2016 it hit me like a ton of bricks but once the shock wore off I decided to just treat it like any other illness and take the meds the doc ordered and just work through it until nothing worked.  I immediately started on yervoy and Opdivo.  My side affects were pretty mild (itching but meds helped by the next day) some arthritis in my right knee that meds help and pituitary swelling which is controlled by steroids. Oh yeah, and my hair went white.  None of these things got in the way of living my life, going out with friends, work, etc…

I am now NED and if my next scans in July are clean, I will be completing my last transfusion next month.

keep your hopes up and be sure to live your life while doing treatment.  Don’t get down until you’ve run out of options.  As long as there are treatments to try there’s always hope

Great news!!!  You basically told my story – vitiligo, steroids, 2 years of treatment, etc…  I have one more set of scans next month and if those are clean like the ones before then my doc is taking me off treatment.  Can you keep me/us updated on the weaning of her steroids?  I’m nervous to do it after being on them almost 2 years and I was told that very few ever get off of them.  I hope you’re sister is successful with that and I look forward to the updates 

HI

I was one of the very few who lost hair – went almost bald.  Hair came in pure white but my scans have been clean and will hopefully be finished with Nivo sometime in August.  Everyone reacts differently…i had an itchy rash afte the first ipi/nivo treatment; hypophisitis after my 3rd ipi/nivo treatment along with hair loss.  Since then i've had some RA in my right knee but thats about it….

I met with an rhumatoid arthritis specialist and she did say it was an autoimmune response to the Nivo.  She gave me Meloxicam (anti inflammatory -non steroid) .  If i take it as soon as I start to feel pain, the pain doesn't seem to increase.  I do have flare ups but the meloxicam seems to work the best if I take it early

HI Stephanie

Same story for me (although I only did IPI/NIVO and only made it through 3 cycles before hypophisitis.

I also lost my hair and it came back in all white – pure white – but i found an amazing colorist who has added blonde lowlights so now I'm a blonde!

I was on steroids until i got down to 8mg and then started seeing double and diagnosed with hypophisitis again.  Took 3 months until I was able to start on Nivo.  I've now been on Nivo almost 17 months and I'm NED.

Have you had scans done since your hypophisitis?

HI Shelby,

The link doesn't seem to work.

Karen

I had 2 bouts of hypophysitis and both times had to go on heavy doses on prednisone.  the 2nd time the doc said that once I got down to 10 mg she would try Nivo (not ipi again).  I have been on daily 5mg and been doing nivo every two weeks since November 2016

HI

I too developed bad joint pain and swelling in my knees after my 5th month on Opdivo.  specialists ruled out any ortho problems and after seeing a doc specializing in rhematoid arthritis she assesed that it was a side affect due to the Opdivo.  She was trying to avoid additional steroids (I'm on daily 5mg from my hypophisitis from the combo opdivo/yervoy last summer) and she put me on Meloxiam – she said was like a heavy duty advil – and pantaprazole to avoid acid reflux due tot eh meloxicam.  the swelling would come and go for about 3 months but I have been off the drugs and no swelling since end of July.  I'm hoping it won't flare up again but at least I know now which drugs to take to keep it at bay until it goes down again

My girlfriend is a pediatrician and when I told her about the itching I was having she told me to ask my doctor for a rx of Atarax.  Its a non-steroid heavy duty anit-histamine.  It worked like a charm and I stopped having the itch the next day.  Now I take it whenver I feel a flare-up and its gone almost immediately.

hope that helps (my doctor had neve even heard of atarax but it did a great job)

HI. 

I was diagnosed stage 4 in may 2016.  Started going white fall of 2016.  I now have white hair on every part of my body and i never had much color on my skin but now I'm even whiter.  I look like an albino.  I am deciding to rock the new look and screw everyone else who doesn't like it 🙂   I work for a fashion tradeshow and when our fashion director saw me in February he told me not to color it and to wear red lipstick to show it off (not that you're going to wear lipstick – not that there's anything wrong with it).  Just be proud of it and think of it like a scar of what you've survived.  Wear it like a badge of courage!!

Heck yeah. I have a drink once or twice a week.  I have had over 2 years of treatment and I wouldn’t have made it through if I couldn’t go out with friends and have some drinks.  I don’t get drunk and it hasn’t affects my labs. Enjoy life even when fighting this damn disease

I’m back on the boards again because I too had a lymphnode light up after being NED for 2 years after 2 years of Opdivo. My oncologist put me on Opdivo 1x/month with double the dose I had before. Keeping my fingers crossed that our side affects don’t come back.  Keep us updated!

I lost my hair (extremely thinned out) after my 2nd ipi/nivo treatment.  It started growing in a month later but it came in total white.  That was in September 2016. My hair has remained totally white since then (with my fair skin, light blue eyes and white hair I've got a snow queen look happening).  I haven't heard of anyone getting their hair color back.  So far, no sign of anything but white…