Stage IV Metastatic Melanoma – 36 years old

No advice to speak of, but just empathy that that is a LOT to deal with. Nov. 4th is right around the corner, so at least you’re in the right town to get help. Regarding your bosses, people can surprise us positively sometimes. Let’s hope that’s the case here. Anyone who wouldn’t have appreciation for the situation you’re in has some real issues. I’m starting combo therapy on Friday, which might be what they give to you, so hoping for the best for both of us.

Hi Jennifer,

I am so sorry that you are going through all of this. I;m sure you will get great care through MD Anderson, and luckily Nov 4th is next week. I know it seems like an eternity right now. Make sure you see a Melanoma specialist, that is critically important. They will likely start you on immunotherapy and probably check to see if you are BRAF +, which would allow for targeted therapies too. My husband was diagnosed with Stage IV , with an unknown primary, one year ago. He did the Ipi/Nivo combination and had several side effects, but they were tolerable and the worst of it was over in about two months. The advancements that have been made with immunotherapy are truly amazing and have radically changed the outcomes for Stage IV Melanoma patients. There is lots of hope and there are many survivors for you to talk to!!! Another big benefit of immunotherapy is that you probably won’t look like a typical cancer patient during your treatment. You’re not likely to loose your hair or get a grey pallor. I know this seems like a trivial detail, but it will be helpful to you as you navigate this process with your new employer. Good luck!!

This is a scary time but there are treatments and you are fortunately headed in the right direction at MDA!
Please use search bubble to find Bubbles, where you can find concise, up to date information. Celeste has created a “primer” for new patients. She may chime in here.
Many people survive Stage 4. I became Stage 3 in 2016 and Stage 4 in 2017. It has been business-as-usual ( homeschooling mom of a child with Down syndrome and manager of the family and home!) during all of my immunotherapy and most people are able to continue working outside of the home throughout.
MDA accepts many insurance plans. Go on and refer yourself. I did. Good you are getting the images sent. They also wanted biopsy tissue from Ky so that was also sent.
You will get excellent care.
Good luck to you.

Hi Jennifer. Sorry for all you are dealing with. My best advice: See a melanoma specialist. MDA certainly covers that one. Arm yourself with knowledge about treatment options. Here is a link to the primer that was referred to: https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/08/melanoma-intel-primer-for-current.html There is a link to a list of acronyms at the end. And finally, take heart and keep hope. I was Stage 3b in 2003 when there were NO effective treatment options with a 10 and 12 year old. I progressed to Stage IV with brain and lung mets in 2010. Still – NO effective FDA approved treatments, but lucked into a Phase 1 anti-PD-1 trial. With my last dose in June of 2013 – I’m still here and NED (no evidence of disease) for melanoma. The treatment options currently available only became so in 2011. But they are there for you and you have every reason to expect a good response. Ask more questions as you have the need. There are many smart and caring peeps on this board. I wish you my best. Celeste

Hi Jennifer,

My name is Jackie. I’m sorry I’ve been mostly away from the board for the past four weeks since I’ve been covering for several work colleagues for the past month that are out of the country for family emergencies. But I just saw your post and wanted to offer support. I live in Pearland about 12 miles south of Houston. Was just over by MD Anderson twice last week (my daughter is doing physical therapy at Children’s hospital right there by MD Anderson). I’m a medical librarian and clinical research manager and actually know the librarian at MD Anderson that runs the patient library and some of the librarians that run the medical library. We can get you support! I’m familiar with the MD Anderson system and the oncologists there and their areas of research. They are all top of their field. We had just moved here from Michigan when my husband was diagnosed, it felt a little bit like fate that we were by MD Anderson. His surgeon was fabulous, highly recommend Dr. Cormier and she worked with Dr. Amaria. If you need ANY help navigating the system, I WILL GLADLY HELP. I can share my experience getting through the gatekeepers at MD Anderson (aka the schedulers). WE can support you to advocate for you and what you need. MD Anderson also has patient advocates on staff and social workers that will help coordinate as well and can help you with any insurance questions, issues, etc.

First, HUGS. You’ve had a huge shock and I’m so sorry. Please know that waiting a week until insurance kicks in will not mean anything and try not to worry about work (easier said than done), they need to support you, I believe there might be legal implications if they try to fire you. Let them worry about that right now (again, easier said than done, but you do have so much on your plate) You are doing the single most important thing by going to MD Anderson, just like Bubbles said. Many on the board will tell you seeing a melanoma specialist is most important variable, they understand all the options available to you and at a place like MD Anderson, you WILL have access to every option including more than just standard of care. The other most important variable is that treatment options have changed drastically in a few short years so you will have access to this treatment. My husband has been going to the Melanoma Clinic for 5 years and sees Dr. Amaria.

By the way, I also suffered from anxiety in my 20’s (and now sometimes) and when my husband was diagnosed in early 2014, he had every bad prognostic criteria, it was overwhelming. Had to find support. If I’m good at anything, it’s getting support 🙂 But he is still here like the others and has been No Evidence of Disease so far, just to provide you some positive stories.

I know you have a lot but this group will help you. If you need in person help, I will gladly meet up anywhere and can sit with you at appointments, show you around MD Anderson (it is huge) or anything you need as a newbie to Houston. When we first moved here, I came two weeks earlier than my family (we dont have family here in Houston) and it was so lonely, I understand. I work at home remotely for University of Michigan so I can meet up with you for coffee, etc. And my husband, who hates anything medical or research based, will even meet up and tell you how great it is that you are going to MD Anderson and how one of his coworkers is getting treated there and one of my best friends is getting treated there right now for Breast Cancer. My husband works at Baylor College of Medicine which is within walking distance of MD Anderson.

WThis board has got your back. Please feel free to email me at [email protected] or text me at 248-207-1520. Will gladly help in any way. I had gone to college here before and have a large support of moms here in Pearland that could help you as well.

Many hugs,
Jackie

I’m sorry to hear your news. I have four stage after a 2B a few years ago. It was very disruptive because my brain met was a found Terrible Illness was supposed to be at the end. (Unrelated brain tumor). I have three kids (12, 10, 6) and that is the worst. I am on the combo now and thinking of now. (Oddly, a law librarian).

There are so many good people here who know a lot about this fight…much more than I do. I just wanted to say that I have a 4 year old and a 7 year old , and while I am not stage IV ..I know how scary, stressful and anxiety inducing melanoma is. I know I speak for a lot of people who normally lurk and dont post a lot in saying our hearts go out to you and we are rooting for you and together with you as you take this on. Just by posting and asking questions you are helping so many others. I’ll be praying and sending you lots of good energy. You got this.

Jennifer, i just wanted to let you know you are in my thoughts and prayers and I am sending you strength and good vibes!

I’m sorry you are having to go through this Jennifer. I live in NC but received my last treatment from MDA in late 2016. Will actually be down there on the Nov 12 and 13 for 6 month scans. MDA has some fantastic Melanoma Doctors. I see Dr. Tawbi who is great. Dr. Davies is amazing also. There are many others also but you couldn’t go wrong with either of those two. Hang in there and vent here anytime. We all know what you are going through. It’s scary as hell right now. I had a 1 and 3 year old when I was initially diagnosed and wondered if I would get to see them grow up. They are now 9 and 10 and I plan to watch them grow up for many years to come. It will get better as you start to see a treatment path formed.

Brian

I’m about your age and am also going to MDA. Don’t worry too much about your job right now. Hopefully they will work with you, but even if they don’t, you can be fast tracked on disability if needed, and you can pay the premium to continue your work’s insurance through Cobra, or you can find another policy. It’s not cheap, but those things can be worked out so don’t worry about them too much. Right now focus on treatment.

Good Luck!

You need to address your insurance status immediately. Since you have no coverage with your new job you have to contact your California insurer and make a clear record in writing that you were diagnosed with your current condition during their policy period. You may have a reporting Requirement under the terms of the policy to notify them of all applicable dates. If your health insurance in California was employer provided you may be able to lawfully extend coverage for a period of time, I.e. 18 months. Don’t delay taking care of this even though you are trying to cope with the new diagnosis, the new move and other pressures. If you receive a cancellation notice of health insurance coverage consult with an attorney familiar with health insurance policies.