Melanoma: CT scan showed metastatic mass on my left ventricular wall

Hi i am just starting opdualag 3 rd treatment today. Did you have positive results?

@ch3763, I'm tagging @rebmar to make sure that they see your question about treatment with
Opdualag (nivolumab and relatlimab), a combination immunotherapy treatment.

@ch3763, how are you doing on Opdualag?

@colleenyoung
I just began Opdualag for melanoma metastasis to my lungs. Does anyone have any comments regarding their experience with Opdualag? I’ve only had one infusion almost 3 weeks ago and 2 days ago began feeling awful. I don’t know if it’s related but would like to hear if others experienced similar side effects.

@uma1: I m also treating with immunotherapy for melanoma mets to lung, albeit a different protocol. I found the patient guides put out by AIM Melanoma Foundation to be beneficial in becoming familiar with what to expect with the various treatments.

Specifically for Opdualag: https://www.aimatmelanoma.org/wp-content/uploads/Nivo_Rela_ACTIONPLAN-Final-AIM-Logo-Only.pdf

It’s not first-hand experience, but does that help?

I can’t thank you enough! I had looked at AIM and completely missed what you provided the link for. May I ask what protocol you’re on?
I think I’m very nervous since I had been going to a top cancer hospital in Boston since my surgery 3 years ago. Due to no longer having transportation to there, I had to transfer to a much closer hospital and I’m very discouraged with their services, in fact they’re terrible. But, I have no choice unfortunately.
I’m in my 70’s with numerous health issues. Perhaps I’m being paranoid but I guess I must get used to the current hospital being sub-par.
Thank you again, if there’s anything you might share about your experience I’d love to hear it.

@uma1: I've been undergoing treatment with pembrolizumab (Keytruda) for the past year and did encounter some adverse reactions initially that the AIM protocol helped me to identify, report and seek treatment for early on - a skin rash, then a thyroid issue. The good news is the Keytruda has been very effective in treating my lung mets as my one year PET scan showed no active lesions, for which I'm obviously grateful; I'll continue on this regimen for another year.

I also have some co-morbidities which can complicate matters, in fact, I'm in the midst of one such issue now that has me rather worn out following a hospitalization two weeks ago and has resulted in having to cancel a planned total hip replacement (I'd had pins placed 7 years ago following a fall and now the bone is eroding) but more disappointing to me is my husband and I had to cancel a trip where we were to meet friends this week. So one thing I've learned in this whole process is the need to be flexible. Kind of expect and accept the unanticipate and roll with the flow; prioritizing my health is the most important consideration.

I'm sorry to hear you've been dissatisfied with your new hospital. I will also be going to a new facility this summer when we're in another state for a few months so I can appreciate having qualms about changing - I know I tend to get very accustomed to what has become familiar and where I've developed a relationship with staff. One thing to keep in mind is that the protocol is generally the same at institutions regardless of where the immunotherapy is being provided. Is this a concern of yours or have there been other factors adding to your unease?

@uma1 I hope you can find a way to return to the top cancer hospital. Here are a few suggestions for assistance in traveling for cancer treatment.
Google: Many organizations offer travel assistance for cancer care, ranging from ground transportation to free flights and lodging. The type of assistance often depends on eligibility criteria such as financial need, distance to treatment, and specific diagnosis.

General & Ground Transportation
American Cancer Society (ACS): Road To Recovery® This program provides free rides to and from cancer treatment appointments using volunteer drivers. Availability varies by community, and patients can call 1-800-227-2345 for more information. The ACS also provides lodging through their Hope Lodge® program, which offers free temporary housing for patients and caregivers traveling far from home for treatment.
CancerCare Offers limited financial assistance for transportation, home care, and child care for eligible patients. Patients can call 1-800-813-HOPE (4673) to check eligibility and apply.
Mercy Medical Angels Provides free transportation for medical care for low-income patients, including gas cards, and bus or train tickets for long-distance travel. Veterans may also be eligible for special assistance.
Society of St. Vincent de Paul Offers various types of local assistance, including emergency transportation, based on need. Contact your nearest Catholic Church to find a local conference.

Air Transportation
Air Care Alliance A national network of volunteer pilot groups providing free air transportation for patients needing to reach distant medical care facilities.
Air Charity Network Facilitates free air transportation for patients who must travel to specialized healthcare facilities located far from home.
Corporate Angel Network Arranges free flights for cancer patients using vacant seats on corporate jets flying routine business.
Lazarex Cancer Foundation Assists with travel and lodging expenses for eligible patients participating in clinical trials.
Miracle Flights Provides free commercial flights to children and adults in need of specialized medical care far from home.

Lodging Assistance
Joe's House An online database of hotels and lodging facilities across the country that offer a discount for patients and their families traveling for medical treatment.
Fisher House Foundation Provides a network of comfort homes where military and veterans' families can stay for free while a loved one is receiving treatment at a nearby VA health care facility.

Condition-Specific & Other Resources
Alex's Lemonade Stand Foundation Offers financial assistance for travel for childhood cancer treatment at institutions across the U.S. and Canada.
Blood Cancer United Provides grants for ground transportation, airfare, lodging, and other travel expenses for eligible blood cancer patients.
Patient Advocate Foundation (PAF) Offers co-payment assistance and case management services to help patients navigate the healthcare system and find resources.

For the most comprehensive list and specific eligibility details, you can also search the database provided by the Cancer Financial Assistance Coalition.

Just diagnosed with Stage 4 Metastatic Melanoma in upper left lung 2 days ago. First appt w/ Mayo is next Wed. I have been having chest x-rays (former smoker quit 15 years ago) and visiting the Dermatologist religiously for years (life in the sun here in Florida). No skin melanoma ever seen to date. Lung nodule first showed up in April on a regular chest CT scan. Was still there on follow-up scan Aug 3 with no real change or growth. Chose to do biopsy done Aug 7 anyway instead of waiting to do another follow-up scan in 3 months. Biopsy showed this. Hoping this is a place to track to see what I'm in for. Thanks.

@silversurfer51 : Welcome to Mayo, both to Connect and to your upcoming appointment. I'm glad you found us here; I'm going to look into seeing whether we can create a new header for your post this was included on one from a few years back for ventricular melanoma.

First of all, let me commend you on your smoking cessation of 15 years and for being so diligent about skin checks. In addition to the critical importance of applying - and reapplying - sunscreen daily esoecially in sunny climates that's one of the best steps to check for early signs of skin cancer - basal cell (BCC), squamous cell (SCC) or melanoma, the most aggressive form most frequently associated with malignancy.

Unfortunately, there are also cases where there is no known primary site that had formerly been detected on the skin when melanoma has been found in a distant site - such as the lymph nodes or distant organs, like the lung which has occurred in your case. Like you, I was found to have a lung nodule when a CT had been performed for another reason; unlike you, I had had a history of skin melanoma although it had been classified as unlikely to metastasize. So I know these results are suprising and very unnerving, to say the least.

To help you understand what you're in for, let me ask you some questions first if I may. You mentioned you live in FL so will you be having your appointment at Mayo in Jacksonville? Will you be meeting with an oncologist? Have you been able to set up your online patient portal at Mayo yet? The portal will allow you to have full access to your medical records, documetation of visits, lab tests and imaging as well as the ability to contact your providers with questions and for them to contact you. This information will help guide you as to how to do that and how to best prepare for your first visit: https://www.mayoclinic.org/patient-visitor-guide/how-to-make-the-most-of-your-appointment

This is an overall guide as to what to expect following a melanoma diagnosis in terms of diagnostic testing and possible treatment, and provides a link specifically to care at Mayo Clinic: https://www.mayoclinic.org/diseases-conditions/melanoma/diagnosis-treatment/drc-20374888

If and when you're ready, there is also an online support group through Mayo, open to anyone who treating for metastatic melanoma. I have been participating in this forum since my own diagnosis going on 2 years ago and have found it very helpful. Here is some information on it: https://connect.mayoclinic.org/event/melanoma-support-group-meeting-2-8b4043b9/

Wishing you the best with your appointment next Wednesday. I'm anxious to hear how it goes. Can you fill me in here afterward to let me know?

Thank you, Susan. Definitely unsettling just 3 days in here. I'm sure you know the feelings we are going through. In answer to your questions... Yes, going to Mayo in Jacksonville. My wife and I were both born and raised there and now live down in Flagler County. My appointment on Wednesday is with Dr. Doonan (hematology/oncology). I also have an appointment at Advent Palm Coast with Dr. Sai (also hematology/oncology) on the 25th. I was originally referred to Dr. Sai by Dr. Alvaro Martin (Advent Daytona Pulmonologist) who did my biopsy a week ago. I originally called Mayo for two reasons; I wanted a second opinion, and I wanted an appointment sooner than the 25th. We'll see what path this takes but I would be happy for Mayo to run things in consult Advent so that maybe some treatments can be done in Flagler without driving to Jax. I also have an appointment with my Dermatologist tomorrow at the suggestion of Dr. Martin to bring her into the loop and get a good body scan. I will try to update you once I have my appointment Wednesday. I am open to any advice or comments as this is all brand new to me. Thank you for all the info you provided. I appreciate you for taking the time. By the way, I turn 75 in 8 days, and we have a short weeklong vacation planned to celebrate which we will cancel if the Dr. says we should. Oh... almost forgot. Yes, I am set up on the Mayo Clinic Patient Portal.