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July 23, 2013 at 9:11 pm #21468JudeParticipant
Like Ursula, I too posted a few times on the Stage III site where I was given very helpful advice for finding a melanoma specialist. I am in Illinois and am being treated at the University of Chicago.
I spent several months on Zelboraf but had an adverse reaction that hospitalized me for awhile. My dose had to be cut in half but for several months it kept the melanoma from growing. As with a lot of us, after six months, the Zelboraf stopped working and the 4cm tumor on my back took off. I kept asking my doctor if it could be removed but he wanted to try something to shrink it so after waiting three months, while still taking the Zelboraf and the tumor increasing to 12 cm, I was put on the MEK/BRAF combo trial.
I spent a month and a half on that trial before being taken off of it because the tumor grew to 16cm. The specialist sent me to his surgeon after all of this but the surgeon said we waited too long because the tumor was embedded in the muscle and he would have to remove a huge portion of the muscle and still not get all of the tumor.
Now, I’ve started Yervoy but the back tumor has grown again. It hurts so much.
I have a choice; stay on Yervoy and ride out the pain hoping this works, or doing the surgery that will put off any other treatments for a long time. I have a couple other areas that are not nearly as big in my back and chest wall.
Anyone have any advice of any sort I’d be grateful!
God Bless this site and All of You!
JudeJuly 23, 2013 at 10:24 pm #61911PatWParticipant
Oh, shoot! What can I say?! Sounds like you got dealt a really bad hand this time around. But please don’t despair. You still have a lot of arrows in your quiver.
As you know, melanoma is a very complex and unpredictable disease. Melanoma treatments are equally complex and unpredictable. I think that you and your oncologist made a good choice in going for the BRAF/MEK combo. There were very good reasons to be optimistic about it. Unfortunately, it didn’t work for you. Damn! But please don’t second-guess yourself or your oncologist. When battling this beast, all that any of us can do is make the best choice we can with the information we have at the time and never look back.
They Yervoy may just do the trick. Unfortunately, it can take quite some time to exert its effect. Waiting for the 12-week scans is one of the most difficult aspects of this whole melanoma journey. How are you doing on Yervoy? Are you having much trouble with side effects?
Isn’t there something they can do for that huge tumor on your back that is causing you so much pain? Can they irradiate it (radiation sometimes enhances Yervoy’s effectiveness)? Can the surgeon remove enough of the tumor to relieve your pain even if he can’t “get it all”? Maybe if he doesn’t remove so much muscle tissue your recovery period will be shorter.
If you are generally pretty healthy, I hope you can stay with the Yervoy. When it does work, it can keep the melanoma in check for quite a while. Meanwhile, you can start looking into other clinical trials. Anti-PD1 is very promising. The anti-PD1/ipi combo is looking even more promising. I suggest you really push your doctors to do whatever is necessary to get your pain under control. Try to stick with the Yervoy if at all possible. And start looking into a Plan B so that you know what you want to do should that turn out to be necessary.
You sound like a real fighter. You have been through a lot, but you’re doing all the right things. Keep on doing what you have been doing and believe that one of these arrows is going to hit the mark!July 23, 2013 at 11:35 pm #61912msue5Participant
I vote for radiation and staying on the Yervoy to stabilize things while you search for a trial. Pain control definitely needs to be addressed. You don’t need to suffer. I have used Lidocaine patches for various pain issues sometimes helping, sometimes not. This should be used along with other pain meds. I doubt they would help alone. I was a nurse for 33 years and came across so many patients that would refuse pain meds. They thought it was a sign of weakness. Nobody gets a gold star for toughing it out.
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