I was treated with TVEC in 2017 for 3 tumors in my lower leg. I remained stable for a short time-5 months and then was on Opdivo for 2 years. I wish your wife much luck!
I did not qualify for the 3rd shot as I am no longer on steroids or any treatment. I do teach over 500 kiddos a week but that’s not a qualifier. I will be wearing a mask.
Although not NED for 5 years I am still here 12 years after being diagnosed. Lots of recurrences, surgeries, interferon, clinical trial, T-vec and most recently completed 2 years of Opdivo. Grateful for all the bonus time.
Nodular melanoma diagnosis 2009 with at least 8 recurrences-I lost count. I completed 2 years Opdivo October 2020. My November scan showed no active disease but I have learned how sneaky melanoma can be. No organ involvement just all over my right leg. Just stay vigilant. Grateful for all my BONUS time.
Hello!
I have been dealing with this disease since 2009. I just completed 2 years of Opdivo. I tried the monthly dose but my body could not handle it so twice a month at half the dose was decided. I’m so glad I have my port as after interferon my veins went to crap. I plan on keeping it for another year and get it flushed monthly. I’ve had 8+ recurrences so I am.keeping port in case. Through my 2 years of treatment I’ve had PET scans every 6 months to ensure Opdivo was doing its job. My melanoma specialist wants to follow me closely and never uses the terms cancer free. I’m currently. NED but with my history of recurrences I’ll be monitored for the rest of my life. I’m stage 3C. Every doctor is so different on how often to scan and using CT versus PET. One doctor only wanted PET and only a year of Opdivo. Another feels CT is sufficient and 2 years treatment. I opted for 2 years of treatment and PET scans. Best of luck to you!
I had 3 tumors in my right leg that responded well to T-Vec, in fact they were annihilated. Unfortunately a year later I had another tumor pop up so I am going on year 2 of Opdivo.
As far as pain I’d say it was uncomfortable but the team in the room talked to me the whole time and that helped keep my mind off the injections. Best of luck to you!
Although my journey is vastly different from your wife’s (I am not Braf+), I want you to know my local oncologist (not a specialist) was not willing to give me prednisone when I was experiencing a myriad of inflammation and joint issues. I emailed Dr. Jeffrey Weber, whom I last saw in 2012! He responded that 5mg of daily prednisone would not decrease the efficacy of Opdivo (I was on Opdivo 2 years). Once on prednisone I was able to return to work and my exercise regiment. I mow have osteoporosis, but a small price to pay for a better quality of life. I’ve been winning many battles with melanoma since 2009.
Prayers to you, your wife and your family. There is hope!
I opted for a port due to terrible veins. Best decision. I tried the monthly infusion but my joints became inflamed and calcium levels skyrocketed. Went to 2 twice monthly infusions which helped decrease side effects but I also needed 5mg prednisone for inflammation. I also did treatments for 2 years. I’m stage 3C and have had 8 recurrences in 11 years. Best of luck!
Thank you for responding, Ted! UW Health (I’m in WI) has a prototype mask/shield combo that I think would work great for teachers. It’s being tested and I’m not sure when or if it will be made available to purchase. https://www.facebook.com/56887600728/posts/10158339149945729/
I’m just so anxious as I need my job for the health insurance so I can’t just work anywhere. I’ve been teaching for 30 years. I didn’t work so hard fending off cancer only to be killed by Co-vid.
Thank you to everyone who took the time to respond to my post. I have not made a decision yet. I have until October. I am one who takes my time with making decisions in all aspects of my life. I have had 11 years of dealing with this disease and realize whatever I decide is the choice I make for me and not influenced by my loved ones. So much is a crap shoot with melanoma. So grateful for this forum. Thanks again!
Hi!
I’ve been dealing with this beast for 11 years. As I write this I am getting my Opdivo treatment. I almost had to quit back in January 2019 because I had the less frequent side effects of swelling and severe joint pain. I saw an endocrinologist and rheumatologist. In the end a prominent melanoma specialist was contacted and he prescribed a low dose of prednisone (5mg). Made a world of difference and the prednisone does not negate the effects of Opdivo in low doses. Good luck!
