SO stage 4: So, my significant other has... - Melanoma Caregivers

Melanoma Caregivers

SO stage 4

kellyOd profile image

So, my significant other has stage 4 melanoma. He got diagnosed in 2012 (hes 28 now), got the Yervoy; was in remission for almost 3 years, and just in august he went to an urgent care with a serious headache and it ended up being a brain tumor about 4cm. Went to Johns Hopkins; got it removed; got targeted radiation, and then found out he has a 4.7 cm tumor in his lung which YESTERDAY we found out was ALSO melanoma.. this is bad. so bad. and i dont know how to think, act.. we are in our 20's.. talking about starting a family, and i dont know what to do. Keytruda is being started on Tuesday (october 16th, 2018) and im praying to god it works. (keeps the disease as is, or shrinks the tumor in his chest) ANYONE OUT THERE?!?! can ANYONE relate or talk to me?!?! im loosing my mind!

12 Replies
missyrand profile image
missyrandAmbassador

Dear KellyOd

You have gotten suddenly on the metastatic melanoma train and I’m sorry it has you both careening right now.

I’m hopeful that you all have a melanoma specialist directing care who is looking at his whole body.

Keytruda is a different immunologic from Keytruda that will hopefully work in addressing what the Yervoy no longer has. The side effects are in a similar class, but my husband has had both treatments and the Yervoy was far more troublesome to live with.

Do you already have a good working knowledge about melanoma and treatment? If not, here is a document that was published this year: nccn.org/patients/guideline....

Have you considered asking about a local support group for either you as a caregiver or for both of you? Some of us have been trained by the Melanoma Research Foundation to provide support groups or to be a phone/ email buddy. MRF can help you locate both of these resources.

You will get through this overwhelming time, but this point is scary and has a high information gathering and decision making burden. Some folks find writing down questions with space to input answers helps keep track of these thoughts so you can put them down to sleep.

We will be here

Missy

kellyOd profile image
kellyOd in reply to missyrand

Unfortunately I spend a lot of time reading about melanoma, and any drug they speak about.. which can be good because I get educated, but is bad because the reality of the situation is made apparent.. we are located in Baltimore, so Johns Hopkins and GBMC have been apart of this journey. His oncologist team is primarily at Greater Baltimore Medical Center. The oncology support team has offered me and him counseling, and I definitely took it! He didn’t.. maybe he will in time.. I write down all my questions in my phone whenever I think of anything. Makes it easier when I get there and I’m speechless.. I’m loooking for any outlet at all! And I found MRF so hopefully I can meet some people so I don’t feel so alone :(

Hang in there Kelly! I’ve heard good things about the Keytruda!

Kellyodd, it's crazy making but you can do this. You are stronger than you know based on what you've been through already.

Hi KellyOd,

I'm sorry you are going through this as well. My mom was diagnosed with stage 4 metastatic melanoma about a year ago. She had a past history ulcerative colitis so was concerned about immunotherapy but really had no other options. She has had about 6 infusions of Opdivo and is doing great. She went from tumors rapidly growing to feeling like her normal self and no tumors. When these drugs work they work and I sure hope they do for your SO. The doctor team is so important. We're near one of the ten melanoma centers of excellence and feel we are in good hands. If you can be in one I think it helps a lot. These drugs are having such an impact on people the inventors just won the Nobel Prize. It really is revolutionary and it sounds like Melanoma has a higher success rate than many others. I heard a podcast where they interviewed the inventor and he said it's about 60%. It was an NPR On Point podcast from last Thursday if you are interested. I know it's scary and your SO is so young, but know there is hope. We also found the Calm app helps us sleep when anxiety and worry keep is awake. Not so much about my mom but other family things. I wish you both well.

Is he seeing Dr Sharfman? He is very good and recommended as one of the best experts in melanoma. I suggest you speak to him about any options that may be available to you about family planning. Hopefully, the Keytruda will have a long lasting effect for your husband. Best of luck to you both.

Crycleo profile image
Crycleo in reply to Crycleo

Sorry, I see you are at GBMC, but if they are giving him Keytruda there then he is in good hands, and I do not recommend you switch doctors at this critical point in your treatment. When I replied above I was under the impression that you were being seen at Hopkins.

Best of luck to you.

kellyOd profile image
kellyOd in reply to Crycleo

I actually looked up Dr. Sharfman last night, thank you for mentioning him cause second opinions aren’t a bad thing.. he gets his first infusion on Tuesday.. I’m just praying it works.. the part that gets me is all they can do for him now is give him pain medicine :( and it’s hard even watching that. He needs to take so much to even be comfortable, and sometimes that doesn’t even work..

Hopkins has a Palliative Care Department. It’s for anyone who is experiencing severe pain. They are like pain management specialists for cancer. Not all hospitals have them, so maybe you can ask your doctor for a referral or call them directly at /Hopkins. They can evaluate your husband to see if he would qualify for a pain pump. That’s when if you are experiencing pain you just push a button and it gives you a dose. It’s taylored to each person, so he can get all pain meds intravenously. It’s small, and lightweight, and he can wear it on a holster they have that fits around your shoulder. It’s not confining where you have to stay in the house all the time. He can come and go as he pleases. Palliative Care is for BOTH curative and end of life treatments—so don’t let that scare you. Lots of patients are seen there who are still in curative status. They also have counselors to help you navigate your illness and process this very difficult time. The doctor that runs it is Dr. Thomas Smith. Get an appointment with him. He is very kind to his patients.

kellyOd profile image
kellyOd in reply to Crycleo

I’m looking into him now! Thanks SOOO much for the recommendation!!!

I’m here Kelly, I willl respond to you my story of my significant other... you are not alone, remember you are strong and so is he and there is a way, and it’s my job and Jim’s job to let you know that and keep the faith! I will respond to you shortly

Thank you, today is Ryan’s first infusion of keytruda at 1:45pm. I will be looking forward to a success story :) thank you for responding!

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