› Forums › General Melanoma Community › I’d like someone with experience to help with brain cancer (from melanoma)
- This topic has 6 replies, 3 voices, and was last updated 13 years, 2 months ago by
dearfoam.
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- October 4, 2011 at 12:22 am
This bulletin board has been great. We've posted some miraculous results from the B-Raf medicine, Zelboraf, which shrunk all of my wife's tumors by 90% within two months. We've read some awesome stories too. We;ve tried to only post answers and contribute, but now we could really use some perspective.
Now, the melanoma is growing rapidly. Something we were kind of expecting once the B Raf was no longer effective.
My wife has numerous spots in the brain, the femur and hips. There were 4 brain tumors, with the largest being 1.1 centimeters.
This bulletin board has been great. We've posted some miraculous results from the B-Raf medicine, Zelboraf, which shrunk all of my wife's tumors by 90% within two months. We've read some awesome stories too. We;ve tried to only post answers and contribute, but now we could really use some perspective.
Now, the melanoma is growing rapidly. Something we were kind of expecting once the B Raf was no longer effective.
My wife has numerous spots in the brain, the femur and hips. There were 4 brain tumors, with the largest being 1.1 centimeters.
: About 10 days ago, she started complaining of not being able to concentrate and everything was taking twice as long. She then went into surgery to have a rod put into her femur because of an impending break. When she came out, she was disoriented, and had difficulty speaking. I have had to tell her three different times about the surgery on her leg, because she completely forgot what was done. The doctors said she could go into hospice or into whole brain radiation, with the whole brain radiation giving her a 50/50 chance of living a year. She's a fighter, so she chose to do whatever she can do to fight this horrible disease.I've also had to re-explain this situation two more times. It was bad enough the first time.
The doctors assured me the disorientation was the Oxy, but she's been on the same or higher dose of Oxy for 6-7 months and has functioned fine. I told them over and over that it wasn't the pain meds. She just started whole brain radtation a week ago. We finally got the doctor to raise the dose of Decadron from 2 milligrams to 12 milligrams per day, and that helped a lot for a few days. Now she's back in the soup. I got home from work today and she can't answer any questions but yes or no and can't complete an entire sentence. She can't function, and when I ask odd questions like "Are you green today?" or "What did you think of the snow outside today?" she answers with yes, or a gentle nod.She has this blank stare, so it's really scary.
My daughter is considering moving her wedding from January 7th 2012 to 3 weeks from Saturday because she just wants her mom to be there.
My question is this. Could this be from the brain swelling? Is this a symptom of the tumors affecting her thinking? Can whole brain radiation cause this within a day or two? Does anyone think the disease is progressing rapidly? I called the surgeon again tonight and he just said it was from the swelling and increased the decadron from 12 mg to 16 mg per day.
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- October 4, 2011 at 2:41 am
Your post strikes me as someone who is a bit of a realist, and though my Patnet is sorely incomplete; suffice to say I am a high mileage melanoma patient and what follows is only a reflection of that and nothing more.
As you now know, BRAF inhibitor drugs, specifically Zelboraf, have a limited time of effectiveness due to melanoma being able to find workarounds to pathway drugs.
More to your point, certain regions of the brain, when comprimised by cancer, can effect speech, mobility, memory, vision, cognivite function, voluntary and involuntary organ functions. You have not stated the location of her four brain lesions.
I am no doctor, but given the brain involvement of your wife and the physical presentations you describe; two things stand out to me: One Is Decadron (the dek). Dek is a nasty drug and can cause a complete personality change.
Or two, depending on the regions of the brain where your wife is showing melanoma ; what you are seeing is a manifestation of disease.
No level of oxy would suddenly cause what you are describing given the history you describe.
To your question; yes it could be brain swelling, doubtfull radiation would cause this in 24-48 hours and decadron specifically is for brain swelling, doubtfull, given the prescription drug history you describe would have such a sudden impact, the location and activity of brain metastisis regions would be highly suspect to me.
Expect more changes when increasing dek from 12 to 16……………….and as sorry as I am to say, that is not going to resolve the problem she faces in my no nothing opinion……………look further for the root cause rather than just the symptoms.
Charlie S
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- October 4, 2011 at 2:41 am
Your post strikes me as someone who is a bit of a realist, and though my Patnet is sorely incomplete; suffice to say I am a high mileage melanoma patient and what follows is only a reflection of that and nothing more.
As you now know, BRAF inhibitor drugs, specifically Zelboraf, have a limited time of effectiveness due to melanoma being able to find workarounds to pathway drugs.
More to your point, certain regions of the brain, when comprimised by cancer, can effect speech, mobility, memory, vision, cognivite function, voluntary and involuntary organ functions. You have not stated the location of her four brain lesions.
I am no doctor, but given the brain involvement of your wife and the physical presentations you describe; two things stand out to me: One Is Decadron (the dek). Dek is a nasty drug and can cause a complete personality change.
Or two, depending on the regions of the brain where your wife is showing melanoma ; what you are seeing is a manifestation of disease.
No level of oxy would suddenly cause what you are describing given the history you describe.
To your question; yes it could be brain swelling, doubtfull radiation would cause this in 24-48 hours and decadron specifically is for brain swelling, doubtfull, given the prescription drug history you describe would have such a sudden impact, the location and activity of brain metastisis regions would be highly suspect to me.
Expect more changes when increasing dek from 12 to 16……………….and as sorry as I am to say, that is not going to resolve the problem she faces in my no nothing opinion……………look further for the root cause rather than just the symptoms.
Charlie S
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- October 4, 2011 at 3:40 am
What Charlie said…
I had some cognition problems due to 2 brain tumors in May. I couldn not "task" very well — took minutes to figure out how to use the phone, couldn't figure out how to advance to the next email, etc. This helped them figure out I had new brain tumors. On decadron the week before surgery the symptoms cleared up maybe 30%. I got lucky with surgery/resection a week later — immediately (when I woke up from surgery) I could tell I was feeling much better.
Every situation is going to be different. I don't know if removing the tumor was the trick per se, or the removal of pressure on the rest of the brain from removing a 2 cm+ and 3 cm+ mass from two differrent lobes.
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- October 4, 2011 at 3:40 am
What Charlie said…
I had some cognition problems due to 2 brain tumors in May. I couldn not "task" very well — took minutes to figure out how to use the phone, couldn't figure out how to advance to the next email, etc. This helped them figure out I had new brain tumors. On decadron the week before surgery the symptoms cleared up maybe 30%. I got lucky with surgery/resection a week later — immediately (when I woke up from surgery) I could tell I was feeling much better.
Every situation is going to be different. I don't know if removing the tumor was the trick per se, or the removal of pressure on the rest of the brain from removing a 2 cm+ and 3 cm+ mass from two differrent lobes.
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- October 4, 2011 at 5:05 am
My dad had similar disorientation due to brain swelling from tumors. We have only ever known of this disease after the 6 or 7 tumors were discovered. He was on 8mg Dechadron and has been tapered down a couple times. He is on 1 mg right now and the more physical symptoms are coming back. He has not been on Zelboraf yet (pending test). I have to call the Doc tomorrow as I feel like there must be some swelling happening.
Sorry to hear to hear you are going throug this. I know it is hard explaining things to the patient.
-DF
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- October 4, 2011 at 5:05 am
My dad had similar disorientation due to brain swelling from tumors. We have only ever known of this disease after the 6 or 7 tumors were discovered. He was on 8mg Dechadron and has been tapered down a couple times. He is on 1 mg right now and the more physical symptoms are coming back. He has not been on Zelboraf yet (pending test). I have to call the Doc tomorrow as I feel like there must be some swelling happening.
Sorry to hear to hear you are going throug this. I know it is hard explaining things to the patient.
-DF
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