My Husband was Diagnosed 7/17 with Advanced Stage IV Metastatic Melanoma

[SGHSweethearts]

Hello, I am so glad I found this site, I have no one to talk to and just looking for some moral support, and people who are going through the same thing, and seeing what else is out there, and what to expect. My husband was home ill for 2 weeks with what we thought was a terrible flu, when he still wasn’t getting better he was sent to the ER where he was diagnosed 15 months ago at age 62 with Advanced Stage IV Metastatic Melanoma and was just sent home. His liver was full of cancer, his lungs, 5 areas in his bones, his thyroid, stomach, parotonial cavity, and some lymph nodes. We were devastated to say the least and didn’t know what to do. We were blessed that a friend recommended and we were able to get an appointment with Dr. Steven O’Day at John Wayne Cancer Institute in Santa Monica, CA and he said if you do nothing he will die in 3-7 weeks. We could not believe what we were hearing. Then he said but we can turn this around, and it is going to get worse before it gets better. All this has been true. The 1st 3 months were extremely scary, and I thought it was the end. He was started on Opdivo/Yervoy, but after 2 treatments he couldn’t handle the treatment and was put on just Opdivo, and this still wasn’t working. He was hospitalized 3 times for a week each and his kidneys were failing, rapid weight loss, couldn’t eat. During his 2nd hospital stay he was put on Taf/Mek as well, and still we were expecting the worst. The 3rd hospital stay finally they found a blood infection and he was treated for that, and given steroids which turned out to be his miracle drug. Within 3 weeks he was back to work full time. He stayed on the Taf/Mek for 6 months, then they wanted him to try just Opdivo. He stayed on steroids for 1 year, every time he tried to come off them he would get really sick and need to go back on them. He has now been off the steroids for 6 weeks, and just on the Opdivo. He has been on morphine, and is slowly trying to come off this as well. He is always tired, and has constant pain in his abdomen, but he still is able to go to work. He has good and bad days, but we have learned to live in the moment and never take a day for granted. His latest scans after 15 months show no evidence of disease. I don’t know how that is when he still has a lot of pain, and severe inflammation and swelling, but my husband for now doesn’t want to go back on the steroids. The Dr. has said a few different things. 1) If we need to we are lucky we can still re-introduce the Taf/Mek. 2) If we need to we can re-introduce the steroids and Morphine as well. 3) They have also said that in 3 years if Opdivo is still working they will then stop it. I am very scared about the unknown, and don’t want to give up the Opdivo, I feel it’s our only thing that is keeping him here with me right now. I don’t know if after a while it just doesn’t work anymore. I don’t know how long we can keep the Melanoma under control. Is anyone out this far and have any words to let me know what may be coming in the future.

[kellyOd]

My boyfriend is no where near that far, but you just gave me hope that it CAN get that far.. he’s a week and a half into the taf/mek combo and to be honest we started doing his Will papers.. it is so advanced no doctor is giving any timelines or anything WHICH I GET! But he’s tolerating it pretty well so far. I am SOOOO happy to hear your husband is doing so well my GOD! You guys are so blessed. I will keep following to see if anyone has experience.... thank you so much for sharing

[SGHSweethearts in reply to kellyOd]

KellyOd, Do not give up hope. I was told by our Doctor, a few years ago these drugs, and treatments were not available. It is a little odd to say I am thankful that if this had to happen it has happened at a time where there are different treatments available to try to attack this cancer, and give our loved ones extended and quality of life. Yes, we are blessed. I will pray for your boyfriend, that he too will be blessed with holding this melanoma at bay, and give him quality of life. My husband right now is living with Advanced Metastatic Melanoma, your boyfriend can to. Every moment is a gift from God. I will keep updating here, and looking to see how your boyfriend is doing. The next new treatment is just around the corner, I have to believe that 🙏🏻

[missyrand Ambassador]

Wow, SGHSweethearts!

I only personally know one other person who had a similar presentation (white male, early 60's, ER diagnosis of advanced aggressive melanoma to brain, liver, lungs, bone) and he had surgery to remove 3 of the brain tumors, started on combo Optivo/Yervoy as part of a clinical trial, had a severe reaction to the Yervoy (brain swelling) which docs are unclear if this was due to the combo of the meds or if meds were started too soon after brain surgery, but at any rate he continued for 1 year in the trial and went quickly to NED (no evidence of disease). He was a part of the trial looking at do you need to continue treatment for 24 months or can you stop at 1 year He was in the 1 year arm since he was so responsive.

He has since developed some seizure activity which started about a year after the brain surgery. He is on antiseizure meds and they are trying to learn what triggers it, what the best dose of meds are to prevent them. He has had 1 grand mal and one petit mal He had no history of BRAF meds or ongoing prednisone.

To me, your story is a great example of how individualized medicine can be at this point in melanoma.

It sounds like you have ongoing questions for your oncologist, as do most of us.

Right now my husband is having ongoing GI side effects even though his last dose of Yervoy was 8/31/18. He looks to be in the 1% of folks who have this lingering chronic nausea all day, tired, shaky, diarrhea, with lots of uncomfortable gurgling, lots of pooting of impressively stinky proportions all day and abdominal pain that can be sharp at times. He is also working fulltime. He has not been able to come off the high prednisone dose very much (was on 80, now 60mg plus immodium). I don't know if tumors in the liver or bone, once "killed" still occupy space, or create negative space in the liver/bone which could still cause pain?

Learning how to live with a chronic, life threatening/ shortening illness is a shift in our hearts and feet. I can relate to the anxiety of "letting go" of protocols that have produced such impressive improvements in longevity and quality of life for your husband and you. We were talking about this a little last night at the melanoma support group we attend here in Alexandria, VA: How much is the immunotherapy/ BRAF/ steroids/other interventions/ lifestyle/eatingsleepingfoodplan keeping the cancer at bay? Will stopping an intervention open the floodgates for the melanoma to come back and spread? How much intervention is enough? What is too much? At what cost of side effects? And our partners in medicine (ie, physicians and NP's and PA's) are still figuring out the answers to these same questions How long will these side effects go on? What other new ones tend to show up and when (and in our little group of about a dozen folks, 3 are in the 1% of some weird and oddball side effects from immunotherapy).

I'm reminded that as much as I am a sponge for information to give me a roadmap, there is really a lot of 4-wheel drive uncharted roads for melanoma. So how can I manage my anxiety, my inability to "know".

I've been drawn in recent months (ha, dragged by a friend and husband) to reading Anne Lamott. Two of her books are Help, Thanks, Wow and Bird By Bird. Here is a TED talk where she lists the 12 things she KNOWS. It gave me pause, made me weep and laugh. Maybe you will, too.

youtube.com/watch?v=X41iulk...(Not working as expected?)

Peace in the journey,

missy

[SGHSweethearts in reply to missyrand]

missyrand, thank you for sharing your wealth of information. I definitely have ongoing questions for our Doctor, and staff. I try to read anything and everything I can, but I must say a lot I have found is not current information, so I was very happy to find this site. I definitely enjoyed the Ted talks thank you for sharing. I have always been a planner, never lived in the spur of the moment, but since my husband’s diagnosis, we are living in the moment. God has blessed us with time, and we will live it the best we can grateful for every single moment.

Michele

[Bigsister3 in reply to SGHSweethearts]

It is so great to hear how well the combo has worked for your husband. I agree with missy this disease and the reaction to the drugs is so different and it is so encouraging to hear your husband has had such a positive reaction. I am planner as well and besides reading everything I could get my hands on about the disease I also made sure to try and plan trips and gatherings with family and friends just to make sure we didn’t get caught in the dr visits and scan cycle which can be exhausting for both of you. Please keep us posted

[SGHSweethearts in reply to Bigsister3]

Bigsister3, thank you. I have been doing the same thing. I have been taking my husband everywhere. We are trying ever restaurant I can find, go to all kinds of crazy festivals, anything I find on the internet that is different we go. We to have been planning more family activities, we have been Apple picking, berry picking, lemon festival, avocado festival, we go to diners, drive ins and dives picks, auto shows, crazy pop up museums, regular museums, and we do a lot of philanthropy work as well. If he’s having a good day we are off on an adventure. This diagnosis has given us a new perspective on life. We are enjoying life and each other to the fullest now, and living in the ever present.

[HSsweetheart]

Oh my, that is a lot to handle. So many changes in a short period of time. Sending all my positive energy for peace and healing.

[Bigsister3]

Love the crazy festival idea