Husband diagnosed stage IV- spousal anxiety

There are MANY, Many, Many, long term stage 4 survivors here on this board. In general, they have been seen by oncologists who see a lot of melanoma and keep up with the rapidly changing research. They have also been at centers where clinical trials are offered. And they advocate and communicate well with their docs.

If you need help finding a melanoma specialist, post another topic saying where you live and what you’re looking for. Someone here will help, I”m sure. There’s also a list on the MRF website. The site has been restructured, but I’d start under Patients & Caregivers.

Finally, yes, this is scary. We have been / are there. Keep going and reach out.

Wishing you peace!
Julie

-Rocco, Ipilimumab (10mg/kg) responder. NED since 2009.

I’m glad you found this group, they can give some perspective to this. First, most important variable is to see a melanoma specialist as the others have said. I personally am shocked any numbers were presented to you at all. As those on the board have said, any prognostic data by nature has to be from the past. We go to MD Anderson and not one of my husband’s doctors have ever given me a percentage in the five years we’ve been there, they’ve never even talked about “how long he has”, they are focused on monitoring him appropriately and treating the disease with whatever tools are available if he needs them. I’m not sure where your doctor is getting these numbers from, there are a lot of variables that would need to be known that would go into even trying to get an accurate prognostic survival rate. Second, this board will give you some information so you can be informed and advocate for your loved one. You’ll get a lot of information coming your way, so let this group know if you need help deciphering what it all means. Third, there are many success stories and the good thing is your husband is starting from a relatively good place, which is No Evidence of Disease and will have access to the top treatments if needed. Best thing would be to get to a melanoma specialist or get a second opinion, and decide on treatment plan. Definitely should be testing for BRAF status. Many hugs to your family.

Much has changed since the dark ages of melanoma, prior to 2011 when NONE of the current melanoma treatments were FDA approved, and that is good! While melanoma still sucks great big green stinky hairy wizard balls, today’s treatment options offer real hope! I know. I was diagnosed with Stage IIIb melanoma in 2003 with a 10 and 12 year old. With no treatment options other than excision and observation, I did advance to Stage IV with brain and lung mets in 2010. But with surgery to lung, SRS to brain met, and immunotherapy, Opdivo via a phase 1 trial from Dec 2010 – June of 2013, I remain melanoma free with no further treatment.

While melanoma is a rough ride, you and your husband can do this! You have found a group of super smart and caring peeps here. I wish you both my best. Celeste

At a Mayo Clinic melanoma symposium yesterday an oncologist said that when he began treating stage 4 melanoma patients their median survival time was 9 months. Recently the median survival time of his stage 4 melanoma patients has been 3 years.

I was diagnosed with Stage 3 Melanoma in October of 2016, when my daughter was eleven months old. I, too, was told I had a survival rate of around 30% (initial staging after PET/CT was Stage IIIC, but this was later downgraded to IIIA-N2A or IIIB-N2B after three of my largest tumors spontaneously regressed prior to treatment). After a major surgery and a year of treatment on a clinical trial for Keytruda, I have now been cancer free for over two years, and my second daughter who was born just after completing treatment just turned one.

Let me start by saying that I am sorry for what you and your family are going through. I can only imagine how difficult this is for you and your husband, especially with a young daughter. For me, the most difficult part of dealing with cancer was the thought that I may not live to see my daughter grow up. However, this also encouraged me to live my best life now, and cherish every moment with my family. While you have a long and difficult road ahead, there are so many reasons to be hopeful, especially given the amazing advances in Melanoma treatment within the past few years.

I understand how devastating and traumatizing it can be to hear the “survival rate” for late-stage Melanoma. When I was first diagnosed in 2016, the doctor that diagnosed me acted like I had just been given a death sentence, suggested I was not a candidate for surgery, and recommended I start treatment with interferon (an outdated treatment based on the prior standard of care for Melanoma). Because she was not a melanoma specialist, she was unaware of the recent advances in Melanoma treatment, and she did not have access to the clinical trials for new treatments. I immediately got a visit with my regional cancer institute (The Siteman Center), where they quickly got me in to see a melanoma specialist and a surgeon specializing in removing my type of cancer. It was clear that this is where I needed to be because they were more aware of the latest treatment options, which option would be best for me, and how I could access that option through a clinical trial.

Based on my experience, I have the same advice as many of the others who have replied to your post. For melanoma, more than almost any other cancer, it is extremely important that your husband seek treatment at a highly-regarded cancer institute where they conduct clinical drug trials. Doctors there will be the best informed about the types of treatments that are available, including all the new treatments only available through clinical trials. They will also have access to those clinical trials, have established relationships to help facilitate getting him on one of the trials, and will know how to conduct the initial staging and diagnostic tests necessary to preserve his ability to qualify for a clinical trial both now and in the future.

Basically, being treated at a leading cancer institute is essential for melanoma because of the amazing advancements in treatment that have been made over the past few years, and the even more amazing treatment options that are in the final stages of clinical trials. The best treatment options for your husband may be on a clinical trial, rather than going with the currently approved standard of care. Moreover, with Stage IV, your husband go through several rounds of treatments until they find what works best for him.

I am living proof of the amazing advancements in Melanoma treatments over the past several years. My doctor recommended Keytruda because it was just proven to be the most effective treatment (at the time) for Stage IV melanoma, so they knew it would also be the most effective for Stage III, even though it had not been officially approved yet because the clinical trial for Stage III was still ongoing. My doctors at the Siteman center were able to get me onto the a
the clinical trial that helped get Keytruda (pembrolizumab) approved for use as an adjuvant therapy for Stage III melanoma.

I can understand how the survival rate you were told would feel overwhelming, paralyzing, and disheartening. Felling this way is normal. When I was diagnosed, I compulsively scoured the internet for survival rates hoping to find something to confirm that the survival rates were better with the treatment I was on, Keytruda. However, I would advise you not to put too much emphasis on the survival rate numbers.

While “survival rate” numbers are useful and important to help you make treatment decisions, they are not meant as a prediction of a person’s fate, nor are they the be-all and end-all of a person’s cancer treatment. This is particularly true for Melanoma survival rates, which are completely outdated due to the amazing advancements in extremely effective treatments that have become available in the past few years. The historical 10-year and 5-year survival rates for Melanoma are inaccurate because they do, and cannot, not take into account the most effective Melanoma treatments have come out within the past ten years, many of which have only been approved for use by the general public in the past couple years and many others currently in final stages of clinical trials. Since the most effective treatments for Melanoma have only been available since 2011, they have not been used for long enough or by enough people to know what the new 5-year and 10-year survival rates are. Unfortunately, there will not be any more accurate survival rate figures for a very long time because it takes 5 years to know the 5-year survival rate of a new treatment and 10 years to know the 10-year survival rate.

The next couple years will probably feel like an emotional rollercoaster of treatment, scans, decisions, informational overload, and pure exhaustion. I hope you have people to lean on for support, and I strongly encourage you accept any help others offer as you work through this. The support I received from my family was invaluable, both for me and my wife. Given everything that we were both going though, including learning to be parents, having others there for emotional and moral support really helped us cope. While we supported eachother and talked about everything together, we both needed someone other than our spouse to help us process what we were going through individually. I needed to have someone to talk to so that I could process my emotions without adding to the stress my wife was already dealing with. Similarly, my wife needed someone to talk to about what she was going through because she didn’t want to burden me with her feelings given everything I was already dealing with. Having other people to talk to and help us process allowed us to be more present with each other when we were together.

I wish you and your husband all the best, and hope you are both able to stay positive as you go through this difficult process.

Respectfully yours,
Delorian

P.S. – If you would like to talk more, please feel free to send me a direct message.