- November 7, 2021 at 2:54 pm
I am a 35 year-old from San Diego and I was diagnosed with stage IV melanoma with tumors in my lungs, liver, adrenal gland, pancreas, kidney, bone and brain in July of 2021. By the time of my diagnosis I was already quite symptomatic (not only do I have tumors in so many locations, but I also have a high tumor burden in my lungs and liver) with nightly fevers and soaking night sweats, pain in my back and ribcage, and fluid retention in my abdomen. I received my first dose of Ipi/Nivo 2 days after my diagnosis and my second dose in early August. By mid August I had no improvements and my pain and fluid retention was only increasing. I had zero strength or energy and needed help with everyday tasks. I also had a follow up brain MRI (5 weeks after my first) which showed the lesions in my brain had grown and that I had many new lesions. At this time my oncologist had sequencing done for a BRAF mutation, which I am positive for. The day the results came back I switched treatment to BRAF/MEK inhibitors and within 2 days started having noticeable improvements in my level of pain and started losing fluid. The day before I started the BRAF/MEK inhibitors I developed a rash on on my lower legs and stomach, which my oncologist thinks may have been the beginning of a response to the immunotherapy, but as my condition was declining rapidly, we all agreed that switching to BRAF/MEK inhibitors would give me some relief and hopefully returning to immunotherapy once I was in better health would give me a chance for a good response. I was on BRAF/MEK inhibitors for 8 weeks and I regained strength, lost all of the fluid and really felt almost “normal” by the end. I had imaging the last week of October which showed that the larger mets in my brain had all shrunk by roughly 75% and that the new mets that were discovered in August had disappeared. The CT scans showed that larger tumors in my lungs, liver and other organs had shrunk by 50% and smaller mets were gone. The bone disease is harder to monitor, but based on the fact that my pain level is zero, my oncologist thinks that my bones are healing as well. I had a third infusion of Ipi/Nivo the last week of October and now I wait to see if I will respond or start having symptoms again. The night of my infusion and the day after I had flu-like symptoms and a fever which gives me some hope that I may respond. Since then I have had itchy skin and small muscle twitches, which are both symptoms I experienced at the beginning of the BRAF/MEK inhibitors as well. I have also continued to have hair loss, which started a week or two into the BRAF/MEK treatment.
Sorry for the long post, but I wanted to share my story in hopes of connecting with others surviving and fighting this terrible disease. I am so grateful to be feeling so well right now despite still having so much disease in my body. This entire experience has been such a roller coaster that of course has been both physically and mentally draining. I went from running 4 miles on June first and feeling quite normal to being almost completely bed ridden and in indescribable pain by the end of August. The daily anxiety of wondering if I will respond to the new rounds of immunotherapy is so tough to handle. I have a wonderful support system with my husband and family nearby, but would love to connect with others that can relate to my experience.
- November 7, 2021 at 8:02 pm
I was stage 3 for 6 1/2 years and diagnosed with stage 4 the end of May. I am BRAF negative and started immunotherapy (ipi/nivo) the end of May. Like you, I have tumors in many locations and was symptomatic when diagnosed. I had significant side effects to the 4 combo doses of immunotherapy but am doing much better now that I’m on the maintenance dose. My first scan showed improvement and decrease in tumor burden but I still have a long way to go which is scary. You’ll find many survivors on this forum who were in similar situations as us and are NED and doing well which gives me hope and determination to keep going :). I’m sure some of them will chime in and respond to you as well. I’m glad you’re feeling well at this point. That’s great news! If you want to talk or text send me a private message and I’d happy to chat with ya.
- November 8, 2021 at 7:52 am
So sorry for what you have experienced and continue to endure. Melanoma sucks great big green stinky hairy wizard balls!!! And the treatment isn’t easy either!!! I have been dealing with melanoma since the age of 39, though I was Stage IIIb at that time (in 2003). I progressed to Stage IV with brain and lung mets in 2010. As there were no valid treatments during all of that time, I managed with surveillance and surgical “cherry picking”. Finally, in December of 2010, I was enrolled in a Phase 1 trial of Nivolumab (Opdivo) as a single agent. After the 2 1/2 year trial, I remain NED for melanoma to this day.
You clearly have a good understanding of melanoma and its treatments at this point. It sounds as though you and your docs made some good decisions. While immunotherapy, esp the ipi/nivo combo have the best OS rates and durability going (AND we have learned works in the brain AND the body – there was once great debate about that) – it does take longer to work than target therapy for those who are BRAF positive. For BRAF positive folks, targeted therapy can act almost like a miracle! Yet we know that those results are not always durable. So, I think your onc is playing things very wise in using the BRAF/MEK combo to decrease your tumor burden, then switching back to immunotherapy for the longer haul.
I am glad you are feeling a bit better. Hang in there. Melanoma is not for sissies, is it? Ask more questions as you have the need. There are many smart caring peeps on this forum. I wish you my best. Celeste
Hi Grace, I wanted to reach out and say hi. I am 34 years old, stage IV, living in Michigan. I am new to the forums and found your post. Funny enough, my name is also Grace. I have also had a hard time with pain, as I also have a high tumor burden. I am BRAF negative, so my path is somewhat different. I am currently doing radiation and hopefully immunotherapy #2 in early January. If you like, I would be happy to connect and exchange messages if you’re interested in sharing experiences with this stupid, awful disease. Argh. Hang in there!
- December 21, 2021 at 5:40 pm
-Grace (from the Midwest)
Hi Grace! Thank you so much for your reply! I am so sorry to hear about your diagnosis and I hope you are getting some relief from the radiation. I would love to connect and hear more of your experience. I find this platform a little hard to navigate (is there a way to direct message?), so let me know if you would like to exchange emails instead.
- December 22, 2021 at 1:21 pm
sing123ParticipantGrace, thank you for sharing your story and I am glad that you are feeling so much better. Something that I have struggled with as a survivor is that melanoma does not always progress/get treated in a linear way. But so fortunately, our amazing docs and researchers have/are developing more than one trick up their sleeve to outsmart the disease. Best to you, and hope that you are back to running very soon.
- January 3, 2022 at 7:09 pm
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