MikeW

Hi Anon…sorry to hear your husband is in this boat….My experience is similar to those that have already posted but I'll reiterate in the event my story helps. 

I only had 3 treatments of Keytruda and was practically disabled from joint inflammation/arthritis due to the automimmune response. I was first advised to load up on ibuprofen, then, the next dr's visit indicated my blood levels had gone up and the combination of joint pain and blood shut treatments down. I was put on 40 mg of prednisone until I felt better. That acted really fast for me and I was able to walk around with only a bit of pain

We tapered down to 10 mg and at the same time, I had my first scan which came back clean so I discontinued Keytruda and have been on prednisone ever since as the arthralgia continues. 

I'm also seeing a rheumatologist for the arthritis so this may be an option for your husband as well. 

Hi Anon…sorry to hear your husband is in this boat….My experience is similar to those that have already posted but I'll reiterate in the event my story helps. 

I only had 3 treatments of Keytruda and was practically disabled from joint inflammation/arthritis due to the automimmune response. I was first advised to load up on ibuprofen, then, the next dr's visit indicated my blood levels had gone up and the combination of joint pain and blood shut treatments down. I was put on 40 mg of prednisone until I felt better. That acted really fast for me and I was able to walk around with only a bit of pain

We tapered down to 10 mg and at the same time, I had my first scan which came back clean so I discontinued Keytruda and have been on prednisone ever since as the arthralgia continues. 

I'm also seeing a rheumatologist for the arthritis so this may be an option for your husband as well. 

Been a couple months since I was on the board….hope this still helps. I had three infusions of Keytruda and had the rash/itchiness that ended up going away. The thing that surprised us was autom-immune arthritis. It was bad enough to discountinue treatment. It's been treated with prednisone and the symptoms are almost gone. Fortunately, I've had two clean scans. 

Sorry you're going through this….but I echo the above on both going to a specialist and getting a few opinions. Ultimately, the course of treatment will be your decision and you want it to be as informed as possible. 

I went to 3 docs here in Chicago and flew down to MD Anderson in Houston, was able to make an informed decision on choosing my doc and the treatment. I'm only 6 months into this disease but have had a great outcome so far. 

Fight on..

I echo Julie's experience on Keytruda and I'm on a low dose of prednisone right now that's working. I also had my knees shot up locally with steriod…worked wonders. 

I'm a bit of a similar story…I was on Keytruda for 3 treatments and then pulled off due to side effects. But, my first scan came back clean.  I'm not sure what the doc was going to prescribe if the scan came back adverse…

Thoughts are with you….

Great news..

Great news! Keep on looking forward!

Cindy…first, sorry you are going through this…but, it seems like your Mel team is looking for some novel solutions for you. 

I've had two lung biopsies in the last 6 months. The first was to validate the diagnosis and understand any mutations. The second one was prior to beginning treatment in an attempt to understand if I was PDL1 pos or neg. 

For the above, they took a much, much smaller sample than 1 CM so my situation may be much different. I went to the interventional radiation department, took the contrast an hour in advance of the procedure and was then wheeled into the room. For me, I needed to be 'active' for the biopsy…meaning awake enough to take deep breaths and hold them as they inserted the needed into my back to access my lung. This process happened 5-6 times until they had access to the tumor. Once they had access, they 'clipped' a few samples. They have me a sedative as well as something for the pain. Both were over in less than 30 minutes.  Recovery was about 3 days or so. 

Thinking positive thoughts for you in the toughest of times. Do try to take care of yourself….

Congrats! Yes…Take the side effects over stage 4 any day of the week! 

I'm relatively new to Melanoma (Jan diagnosis) and here in Chicago too…The good news is that you have options here in town.

I'm with Dr. Luke at The University of Chicago and think highly of the approach, support and forward looking strategy to manage my stage 4 lung diagnosis. I'd recommend him to anyone. You'll also have access to Dr. Thomjas Gajewski who heads up the program. 

I also talked to Dr. John Richards based out of Park Ridge…he's very experienced and focused on Melanoma. 

Northwestern has a new guy…Dr. Jeff Sosman that came out of Vanderbilt and has a good reputation clinically. 

I took the time to go down to MD Anderson and spoke to Dr. Tawbi there. He's good if you're open to travel. 

If you want to connect direcctly. Shoot me an email at [email protected] and we can talk. 

This is a great post and the threads are fantastic….I definitely choose the positive. Our lives are forever changed when we get diagnosed but it's the path we chose to live that is under our control. 

A had read a solid comment worth repeating….I may have melanoma but it doesn't have me. 

You've got the right attitude about laughter, being upbeat and in tough times, reach out for help from your most positive supporters. 

I don't have answers…I'm in the same boat right now on pembro but I thought I'd pass along my story and keep you posted….my liver enzymes 'inched up'…took steriods and it came down in 5 days and now I'm tapering off steriods. I'll do another blood lab tomorrow and we'll re-assess. 

My doc said…this means we've activated your immune system so that's a good thing. I may have to wait until the first scan in two more weeks before we get back on the therapy.  I've heard other folks go back on afterwards.