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April 7, 2013 at 3:53 pm #21174Mom2BeccaParticipant
It seems like it has taken so long for Becca’s treatment to begin but on Monday she will be taking her first dose of Zelboraf, under the direction of Dr. Paul Chapman at Memorial Sloan-Kettering. He has prescribed approximately 900 mg daily for two months and will then switch to Yervoy by IV for about three months. Becca does have the BRAF mutation but the NRAS and C-KIT mutations were not detected. Your responses to k_dub’s question about side effects will be helpful, although we know each case is different. Dr. Chapman said he saw no reason Becca will not be able to care for her daughter, Brooklyn, but the side effects sound pretty dramatic to me.
It’s been an up and down few weeks, that’s for sure – – especially emotionally for our precious girl. One thing she/we have discovered is fatigue is a very present factor in her life now and if she doesn’t rest every day, depression quickly overwhelms her. Also, anger has reared its ugly head on more than one occasion. We are so blessed to have a large and supportive group of people with us on this journey but ultimately it is our faith in the Lord that truly sustains us.
Question – I read “somewhere” that a stage IV metastasized melanoma diagnosis means an automatic Social Security Disability Insurance approval. Is that true? Any direction you can provide will be appreciated. Becca worked full time before Brooklyn was born but has not worked steadily outside the home since then.
Thank you so much.
Mom JudyApril 7, 2013 at 4:26 pm #60003jmmmParticipant
Best of luck with Zelboraf….it has been a miracle drug for my husband. As for social security disability…yes, stage IV metastatic melanoma is an automatic qualifier…not sure about benefits for her, but if she’s paid into the system, she should qualify for something (along with her daughter). The only big problem is that benefits don’t start for 6 months after she becomes “disabled.”. Probably a little harder to prove if she’s not working, but the paperwork is easy to fill out on line. My husband was approved immediately, but had to wait the full 6 months (7 months until the first check came in) before we received any benefits, during this 6 month waiting period and for the entire time she will receive benefits, she will not be able to earn more than $1000 a month. Our family drained most of our savings just to survive during this time. The benefits are helpful, but certainly not enough to live on. Please don’t quote me on all of this…we went through this process last year.April 7, 2013 at 4:34 pm #60004Catherine PooleKeymaster Your daughter should absolutely apply for benefits and as mentioned, for her daughter too. Here are a few direct resources for you to check out in that regard. And check with your state health department too for assistance. Let us know how things are going. If side effects are too bothersome, the dosage can be lowered and there are some alternative braf drugs about to be approved. Here are the resources:
Medicare & Medicaid
7500 Security Blvd
Baltimore, MD 21244-1850
Medicare is a federal system of health insurance for people over 65 years of age, low-income individuals and for certain younger people with disabilities.
National Patient Advocate Foundation (NPAF)
725 15 th St, NW, 10 th Floor
Washington, DC 20005
NPAF provides professional case management services to individuals facing barriers to healthcare access for chronic and disabling disease, medical debt crisis and employment-related issues at no cost.April 7, 2013 at 6:10 pm #60005rochelleParticipant
with Social Security, there is a requirement of having worked “x” amount of quarters during an “x” amount of time. I don’t know exactly what the requirements are…I just know I did not meet them because I had not worked outside the home for ten years before I was diagnosed…though I had worked for 25 years (and paid into SS) before thatApril 8, 2013 at 8:36 pm #60006erinmay22Participant Mom Judy –
I did Z last May-Sept. (You can search my blog for some details on side effects –
http://www.meleanomaandthecity.blogspot.com). I’d pull up specific ones but I can’t access it on my work computer.
As Catherine said – dosage can always be lowered. I only lasted about 10-15 days on full dose before I ended up with a head to toe rash and awful joint pain. After a week off and lower dose (3 pills 2x’s per day) I got by. I’m also a patient at Sloan and Chapman’s plan sounds about right – start on Z to get shrinkage or things to go away and switch to Ipi which can take longer. I was only supposed to do Z for about 4-5 months and switch to Ipi. We switched at 4 months because I had growth again. Did ipi and surgery. Still had some growth on a lymph node they couldn’t remove. So in Jan I started anti-PD1 trial in Sloan’s immunotherapy clinic. Will find out in a week if it’s working! Scans on Friday and results/treatment on Monday the 15th.
And interesting info on the SS disability. I have continued to work full time (with now over 2 years as Stage 4 patient). Although some days I just really want a nap! lol!
Hang in there! Sounds like your daughter is in good hands!
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