I’m so sorry to hear you are in a similar situation as me. I don’t feel I was given enough information to make decisions, but I know they are waiting for the next MRI to see how things are going. I hope all turns out well for you!

Take care!
Jenn

Thank you so much for your response! This is all great information to have going into my appointment next week. I have a couple of questions if you don’t mind:

Does your husband currently work, or has he during any of this?
Is he allowed to drive?
How would you consider his quality of life dealing with all of this? Not to mention yours…Read more

Appreciate your response!

Take care,
Jenn

It’s been a while since I posted; things had been going well since being diagnosed with brain mets and having the CyberKnife treatments done in October 2021. However, I had a grand mal seizure on June 12th and ended up in the ICU. Follow-up with my radiation onc and medical onc later that week seems to have determined I have necrosis in my…Read more

I have been on the BRAF/MEK combo twice. I started it in April last year when it was decided IPI/NIVO wasn’t working for me. Combine that with my 2nd COVID shot and I got really sick. Rash, fever, throwing up, etc. We kept lowering the dose until I couldn’t even handle 1 pill of Braftovi so we stopped. Had surgery in June (tumor removal…Read more

I see the experts have weighed in on your wife’s case (they are the best). I just wanted to chime in on my personal experience. I did Opdivo single immuno for 10 months for stage IIIc melanoma until it stopped working. Went to Opdivo/Yervoy for 3 cycles until it was determined it wasn’t working, so we moved to Braf/Mek, which I had…Read more

I am currently on Braf/Mek for the second time. My first go-round I was on the 6/6 dosage and I had the same vision problems day one – everything was blurry. Fortunately for me, it went away in a day or two. I ended up having some major issues about 2 weeks in, which we now think was due to my stopping Ipi/Nivo after 2 rounds and going…Read more

I also had a “ground glass nodule” show up in one of my CT scans last year. My oncologist said it could be related to some type of respiratory infection or something like that. It was gone by my next CT scan. However, I have not had any lung mets so I can understand your worry. I was scared too until it was gone.

I don’t know if this…Read more

I am currently on Braktovi/Mektovi (again) but I was on the same path as you, although I am in North Carolina (UNC). I had IIIC melanoma that had spread to my lymph nodes, and after immunotherapy stopped working they put me on Braktovi/Mektovi prior to surgery to help reduce things. I will say, my first experience did not go well and after…Read more

Wishing you health and happiness!
Jenn

Many wishes for a happy New Year to everyone!

I thought I would share some good news…I had my first brain MRI two months after CyberKnife radiation and re-starting Braf/Mek in October. My brain mets have shrunk 1/3-1/4 and some of the smaller ones (I have 8) are barely detectable. The swelling of my brain has gone down and the mid-line shift caused by the mets has started to right…Read more

So sorry to hear about this – I, unfortunately, know how awful this feels. I was told I was NED in June of this  after I had surgery to remove my primary tumor and a lymphadenectomy. Had my first 3 month check-up in September and they found 8 mets in my brain. So I’m back at it as well! I almost wish I’d never…Read more

Thank you for the encouragement and positive stories! It definitely helps me get through the day knowing others have survived this battle. We can do it too!

Appreciate your support!

Keeping up the fight,

Jenn

I don’t have any advice but I am new to brain mets so I am following your post to see what the experts on the forum chime in with. They found my 8 brain mets on September 24th; I’ve done one round of Cyberknife radiation so far and I am on Braftovi/Mektovi again after being declared NED in June. My medical oncologist is keeping the…Read more

Sorry to hear you are having tummy troubles! I don’t or haven’t had a stomach met but I have had issues with eating while on targeted therapy meds. Some ideas – some others have suggested:

plain hummus and wheat crackers, peanut butter plain on a spoon or on something, mild soups, toast, grilled chicken, beans, chicken salad, cheese…Read more

Thank you for sharing! I already have an appointment with my oncologist this week to discuss meds following the radiation. Glad to hear you are NED again! I have 8 mets right now…hoping for no more!

Take care!

Jenn

Take care,

Jenn

Appreciate you sharing your experiences!

Jenn

I had my first set of follow-up scans last Friday. I had been having headaches for a few weeks but thinking everything Melanoma-wise was gone I assumed it was allergy/sinus stuff. I finally went to the doctor and got some antibiotics for what I thought was a sinus infection but they didn’t help at all. I had already alerted my oncology…Read more

I have white eyelashes and most of my eyebrows are still turning white. Mine didn’t change until recently after I was off medication and post-surgery, but my nurse navigator said it’s still a good sign. I have a LOT of vitiligo, but I started getting it within 2 months of being on Opdivo only. How are you feeling? I remember you posted…Read more

Sorry my response is late. I was on Braf/Mek for about 6 weeks and absolutely could not handle it. They took me off, restarted, took me off again and put me back on lower and lower doses…everytime I would get sick. They suggested over the counter nausea meds, still didn’t help. I was also battling fevers. They finally took me off of…Read more

I don’t have answers to your questions but I will say this – if you are not comfortable with the diagnosis you were given get a second opinion. I had a bad experience with a dermatologist in the past and ended up with melanoma stage IIIC a few years later. You have a right to go see someone else for a second opinion. I wish I had earlier,…Read more

Sorry you have a need to be here, but this is a very caring group with a lot of information to share so you are in the right place. I see some of our experts have already chimed in and I agree, you should proceed with the WLE and SLNB so you will have a more accurate picture of what is going on. My case was a little different; they…Read more

Sorry for my late response – I went back to work and my schedule has been crazy trying to recover and get back into the swing of things. They started me on the full dose of Braf/Mek, and about 2 weeks in I was in the hospital with what they said was basically a heat stroke. 3 liters of fluids and started me on 40mg of Prednisone. They took me…Read more

Take care! Jenn

I was put on Levothyroxine in November when my thyroid levels got out of hand due to Opdivo. I have never taken Synthroid but I have had no issues with Levothyroxine. My dosage started at 50mcg and they upped it to 75mcg earlier this year. I was also told to take in the morning with a full glass of water, and not to take calcium or iron…Read more

Sorry to hear about the delay. Here’s hoping July 1 is a go! Still rooting for you. Keep us posted!

Jenn

I did 2 rounds of ipi/nivo earlier this year…my oncologist moved me to targeted therapy because he didn’t feel we were getting the results he had hoped for. I had tummy aches and fatigue, but thankfully nothing worse like so many others, but again only 2 treatments and the second one was a low dose because my labs weren’t the greatest…Read more

I know we have all faced so many challenges and struggles, and many of you have fought a much harder and longer battle than me. A piece of me hesitates to post this but I know I love hearing good news on this forum so I am sharing. After initially being diagnosed as stage IV in April 2020, 9 months of nivo, 2…Read more

Jenn

As always, glad to hear things are progressing for you! Glad your drain(s) are out and hoping your pain does indeed recede and you can get some rest. I am anxiously awaiting my drain removal on Thursday! Did they give you any sleep meds to help? I have Trazodone (which was given to me for anxiety and to help me sleep during my targeted…Read more

Sorry I am late to the party, but I am recovering from a lymphadenectomy and excision of my tumor (yay!) under my left arm and it’s been hard to type. That is wonderful news! So glad to hear ipi/nivo seems to be working for you!! It’s awesome to hear it’s alleviating your previous symptoms. Keep thinking positive! 🙂

Best wishes…Read more

I’ve been waiting to hear how things went for you. Glad to hear the surgery went well; 8 hours, wow! Best of luck with your continued recovery and moving forward to the next step!

Please continue to keep us posted!

Jenn

Wishing you the best of luck next week and hoping all goes well! I’m glad you get a short break from the Braf/Mek before surgery so you can hopefully feel a bit better & stronger going in. Thank goodness for Zofran; it saved my bacon a few times when I was on Braf/Mek!

They are taking me off the targeted meds too before my surgery, even…Read more

I think all of us can relate to the anxiety you are feeling right now. The unknown and waiting for a diagnosis/treatment plan are the worst!! You have every right to be worried and scared. Allow yourself to scream, yell, cry, or whatever. As Danielle said, the internet can be your worst enemy at this point, I made the mistake of googling…Read more

Which immunotherapy will you be on? For me, Opdivo alone was fine, no issues for the most part. We did get to one point where they thought I was on the verge of colitis so we skipped a month. When I stopped responding to Opdivo alone and started Opdivo+Yervoy things were different. I didn’t feel awful but not great either. I had a…Read more

The reason I asked about the Braf/Mek is I have a whole month’s worth of it I can’t use…odd to ask but if you can use it I can send it to you. I know it’s expensive as hell and I have zero copay and no refunds so it’s just sitting here staring at me. If you can use it let me know, I can mail it to you or whatever. It’s a lot of…Read more

Keep the faith!! We’re all cheering you on! I’m scheduled for a wide excision and a complete lymphadenectomy on June 11th after trial and error with targeted therapy. Thankfully, my scans were clear so I’m not dealing with tumor burden. Please keep updating us! We’re all rooting for your success! Are you still on Braktovi/Mektovi? If so…Read more

I am not nearly as educated as the many experts on this forum (they are total rockstars) but I still want to share my story with you, even though it is not exactly a testimonial or proof that immunotherapy does work for liver mets. I was diagnosed in April 2020 with supposed mets on my liver and bones. My oncologist started me on…Read more

Like Tim, I also have United HealthCare and while I am not on the triplet (yet at least) they have covered Opdivo, Opdivo+Yervoy, and targeted therapy (Braftovi+Mektovi and now Trafinlar+Mekinist since I could not handle the Braf/Mek) during the course of my treatment, along with the multitude of scans and biopsies. The only issues I…Read more

My story is a little different but I’ll share anyways. My first COVID shot was while I was on Opdivo/Yervoy and the only side effect I had was COVID arm (swollen, red, and hot to the touch at the injection site) about a week after the shot. Second shot came around and I had moved on to targeted therapy (Braftovi+Mektovi) and I was…Read more