Home Forums Melanoma Diagnosis: Stage IV Moving From Stage 2 to Stage 4

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  • #57141
    rmccuskey1
    Participant

    Got my mask fitting yesterday. Not too bad a process just smelled like fiberglass. Right now the plan is to do a whole brain first and then follow where necessary with Stereotactic Radial Surgery on those lesions that are still available. I meet with my medical oncologist on Monday to determine what happens next with the lungs.

    Working on getting set up with M.D. Anderson for a 2nd. opinion.

    #57142
    Catherine Poole
    Keymaster

    Wishing you all the best on these treatments. If you are anxious, be sure to ask for medication to help with the stress. It is very normal to be anxious. Also, meditation can help and stretching. You sound very strong and upbeat and that is commendable. Let us know how you are doing.

    #57143
    rmccuskey1
    Participant

    My health insurance has denied coverage for my BRAF-V600E Mutation Molecular Testing. They say that the test is experimental/investigational. Is that typical of all insurance companies?

    #57144
    Catherine Poole
    Keymaster

    Absolutely wrong on your insurance company’s part and it isn’t that expensive either. I would call someone at http://www.zelboraf.com and let them know. I will in the meantime reach out to Genentech and ask how they can help you. I can’t believe this, but then again I can.

    #57145
    Catherine Poole
    Keymaster

    I have some further answers for you: First, I would recommend you reach out to the Access Solutions team. They won’t be able to provide direct assistance since it’s not technically a Zelboraf access issue (yet). However, they should be able to direct you to an appropriate resource. Their number is (866)4ACCESS.

    Second, I would recommend you reach out to the Patient Advocate Foundation. They may be able to help pay for the test. Their number is (800) 532-5274

    What is the cost for the test, I don’t believe it is huge? Let me know.

    #57146
    rmccuskey1
    Participant

    Walked into my Medical Oncologist office today for a meeting to go over all of the tests that have been completed and the current radiation plan. He’s the lead on my combined team. When I mentioned that my insurance company refused to cover the BRAF V600 test he said: “I have already taken care of that. I called them and explained to them what the test was (they had never heard of it before) and what the results were going to be used for and they approved the test”. I don’t know about you but I was impressed. He hadn’t waited for me to present the problem he took his own initiative to solve the problem. I have to say that I have been overwhelmed with the quality of care from administrative staff, clerical staff, technicians, nurses and doctors in this whole Methodist Medical System here in Peoria. They all work as if they were all in the same organization. All of the tests are shared electronically between facilities (Both Methodist Hospital and Illinois Cancer care and Illinois Surgical Group) and they communicate daily on just my case as well as all others.

    My medical oncologist just returned from a one year sabatical to Duke University to study cancer research etc. He’s on the oncology board at MAYO Clinic. ;)

    #57147
    rmccuskey1
    Participant

    I start my whole brain radiation treatments today. Right now the schedule is every week day for the next 14 days. Then another MRI and decision on next step.

    Trying to get an earlier in the day appointment (Before 11:40am) so I can play golf each day. It’s a very easy way for me to keep up the physical activity. I walk 18 holes each day. My group goes off the 1st tee at 12:00 noon.

    #57148
    Catherine Poole
    Keymaster

    I’m so happy to hear that your insurance covered the test. I was shocked they refused. I hope you get out for that golfing outing! Sounds like a great way to spend the day. We’ll be thinking of you.

    #57149
    Shirley Z
    Participant

    Hi,

    Just cathching up on some news. So sorry you have had to endure so much.

    I hope your treatments go well for you. My husband is a golfer as well. He finds it very relaxing. Hope it has the same effect on you.

    Good Luck to you!

    Shirley Z

    #57150
    rmccuskey1
    Participant

    Had first radiation treatment yesterday. Will have a total of 14. 1st one took a little longer as they made sure the mask alignment was targeted at the image model. The treatment was unusually quite. No side effects yet but i’m sure i’ll start some of those in further treatments.

    Any advise regarding seizures? My oncologist has forbidden me from driving while i’m taking these treatments because of the possibility of seizures.

    How do you know if they are coming on?

    What happens when they occur?

    What do you do at the time they occur?

    #57151
    rmccuskey1
    Participant

    Had all of my family together this last weekend. We all came together on the future and next steps.

    One thing I made each of my children do for themselves and their children while we were sitting at the kitchen table was to take out their PDA devices and place a calendar event on their calendars for my birthday for each of them to have a full body scan done by a dermatologist. And then I made them repeat it 6 months later. If we can get one positive out of this situation it is that they need to be preventative regarding Nodular Melanoma.

    Got our funeral arrangements done Friday. Should have done that a couple of years ago. The family agreed on what those arrangements would include and setting the plans was easy.

    Going for a review and update on our Will etc next week.

    Starting to feel a little something in the skull now after the 4th treatment. Feels like a little dullness.

    #57152
    Catherine Poole
    Keymaster

    I guess it is always good to get our affairs in order, especially if we drive cars, the liklihood of accidents is high. I am especially happy to learn you have your family going for skin exams and they should examine their own skin and their children too. Take it easy and hope your load is lightened soon. We’ll be thinking of you here.

    #57153
    rmccuskey1
    Participant

    Been having some issues with sunburn like redness and extreme dry skin around my temples and my forhead. Found out that bag balm works great. Dairy farmers use it for their milk cows.

    Broke the radiation machine on Wednesday so no number 12 treatment. The machines only 2 mos old but the problem seemed to be between the machine and the interface to the massive door to the room. Anyway i’ll have to catch up next week.

    Hope all enjoyed thanksgiving. I’m stuffed. These steroids don’t decrease my appetite at all.

    #57154
    rmccuskey1
    Participant

    Got the results back from the BRAF 600 test and i’m negative. I have a chemo training session on next Monday and will start Yervoy IPI (ipilimumab) on the 21st. One treatment every 21 days for 4 times and the one treatment evey 90 days for 4 times. My oncologist has told me that i have a more than normal chance with this chemo because my Melanoma is at stage 4a. It has matastitized in the lungs and the brain and not in the liver or bones. 25% chance of being effective versus 10% or less.

    Today is my last whole brain radiation treatment. This will be number 14. Only real side effect is that i’ve lost most of my hair so i shaved the rest of it off. Kind of cold here in central Illinois. Since i have some side effects such as a Sunburn like condition on my temples and forehead i have to constantly use creams and ointments to treat it. Does anyone know where i can get a head cover the wear at night so that i don’t stain the pillows. I’m scheduled for a follow-up MRI on the 17th to determine the effectiveness of the radiation treatments.

    Looks like i’m going to get a round of golf in today, tomorrow and Friday. Weather is getting better here.

    M.D. Anderson has refused to do a 2nd opinion because i have already started and completed the radiation treatment. My oncologist is going to call them and see if he can get the rethink.

    I’ve been asked to have a follow up PSA test for my prostate cancer and am trying make up my mind if it’s really necessary.

    Have a great Day All.

    #57155
    Cecelia
    Participant

    Sorry to hear about your challenges, but I’m full of admiration for the way you are meeting them. Don’t worry too much about the seizure threat. My partner had SRS two years ago, and like you she lost her license–we do everything together anyway. She has had four or five seizures since then, almost always brought on by a fever and almost always first thing in the morning when she sits up, so we are very careful around that move. She had a bad fever for several weeks at the beginning of the summer so they added kepra to her dilantin and dexamethasone, and she has hadn’t had a seizure since. Our radiologist told us that since she has necrotic tissue in the brain from the SRS, she will always have a chance of seizures, but they are very rare and she recovers quickly.

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