› Forums › General Melanoma Community › SEEKING INPUT : SEVERE SIDE EFFECTS FROM BRAF INHIBITOR.
- This topic has 27 replies, 7 voices, and was last updated 11 years, 3 months ago by
Greg.R.
- Post
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- January 29, 2013 at 7:20 am
Hello ,
I am a Stage 4 pallative melanoma patient , I was intially diagnosed with the disease back in 2006.
My host site is behind my left knee which required extraction surgery.
I subsequently relapsed in 2007 ( left groin ) , 2009 ( right temple ) & 2010 ( right temple again ) these relapses all required extraction surgeries.
In August 2012 I discovered a new growth in my abdomen , after Ultrasound & CT scans I was informed that this was indeed a relapse.
Hello ,
I am a Stage 4 pallative melanoma patient , I was intially diagnosed with the disease back in 2006.
My host site is behind my left knee which required extraction surgery.
I subsequently relapsed in 2007 ( left groin ) , 2009 ( right temple ) & 2010 ( right temple again ) these relapses all required extraction surgeries.
In August 2012 I discovered a new growth in my abdomen , after Ultrasound & CT scans I was informed that this was indeed a relapse.
Further investigation led to the dignosis that the metastasis had spread to the heart , lungs , back , brain and chestinal lymph nodes.
I was informed in September that my life expectancy is less than 12 months.I had extraction surgery on the abdomen in November.
Test results showed that I was positive for the BRAF mutation.
I began the BRAF clinical trial on January the 14th.
Since I began the BRAF I have been enduring extreme symptoms that my oncologist does not feel are being caused by this treatment.
Symptoms have been as follows :
– Internal chest and back pain.
– Pressure from the brain feeling like it is pressing against my skull.
– Blackouts. Without warning ranging from 15 – 90 minutes.– Uncontrollable vomiting.
– Hand Shaking / Tremors
– Nausea and Dizziness.
– Constipation.
– Fatigue.The pain level have consistently been in the 7-8 pain scale range , decreasing to 4 – 6 though never disappearing completely. Pain is present 24/7. I have recently had my med's reassessed and have been been prescribed : Morphine 4 times per day ( 3 oral & 1 injection ) , Fentanyl 50gm slow release patch ; Metoclopramide 1 x 3 per day ; Maxolon injection 1 per day ; Dexmethsone 4 per day , plus 2 other medications to assist with the constipation.The constipation has increased dramatically in the last 5 days to the point where I am getting no relief from the medications that are supposed to assist with this.
As you can well imagine I am at a loss as to what to do. This new drug program has been of some assistance , yet , the continual pain drowsiness fatigue and now the high level of constipation related to taking so many medications is proving to be an enormous barrier in attempting to lead a "normal" life.
Before beginning the BRAF I had researched and found that the most participants only experienced sore joints , fatigue , skin irratations , rashes etc
i.e. none of the type of reactions I am getting.
Can anyone assist with any advice as to which direction I should take from here or any alternative therapies that may be of assistance ?
Thank you for taking the time to read my post and I look forward to your feedback.
Greg
- Replies
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- January 29, 2013 at 9:56 am
Hi Greg,I’m so sorry to read everything you’ve been through and going through.
I’m not sure I can answer any of your questions, I come on this forum daily but never really post but i saw your from Melbourne. I’m also from Melbourne. My father has melanoma and is on Zelboraf atm. What hospital are you being treated at? Peter Mac?
I know a lot of people have had a lot of different side effects while on Zelboraf, it tends to all start in the first 10 days or so.
Hopefully someone else will respond with a lot more knowledge then what I have on this horrible disease!I’ll be praying for you.
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- January 29, 2013 at 9:56 am
Hi Greg,I’m so sorry to read everything you’ve been through and going through.
I’m not sure I can answer any of your questions, I come on this forum daily but never really post but i saw your from Melbourne. I’m also from Melbourne. My father has melanoma and is on Zelboraf atm. What hospital are you being treated at? Peter Mac?
I know a lot of people have had a lot of different side effects while on Zelboraf, it tends to all start in the first 10 days or so.
Hopefully someone else will respond with a lot more knowledge then what I have on this horrible disease!I’ll be praying for you.
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- January 29, 2013 at 9:56 am
Hi Greg,I’m so sorry to read everything you’ve been through and going through.
I’m not sure I can answer any of your questions, I come on this forum daily but never really post but i saw your from Melbourne. I’m also from Melbourne. My father has melanoma and is on Zelboraf atm. What hospital are you being treated at? Peter Mac?
I know a lot of people have had a lot of different side effects while on Zelboraf, it tends to all start in the first 10 days or so.
Hopefully someone else will respond with a lot more knowledge then what I have on this horrible disease!I’ll be praying for you.
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- January 29, 2013 at 12:54 pm
Oh, Greg, you really are being put through the ringer, aren't you?! You are a poster child for the concept that sometimes the treatment is worse than the disease. Melanoma sucks!
I wonder if your oncologist told you that Zelboraf only works in 50-60% of the people who take it. When it does work, it works quickly– people start to see visible tumors shrinking in 1-2 weeks. But Zelboraf doesn't work in everyone. I have never heard of some of your symptoms being associated with Z– especially the blackouts, so I have to wonder if some of your problems are due to the tumors themselves.
Some patients who experience severe side effects from Zelboraf benefit by stopping Z for a week and then starting again at a lower dose. You might discuss that with your oncologist. I will be praying for you.
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- January 29, 2013 at 12:54 pm
Oh, Greg, you really are being put through the ringer, aren't you?! You are a poster child for the concept that sometimes the treatment is worse than the disease. Melanoma sucks!
I wonder if your oncologist told you that Zelboraf only works in 50-60% of the people who take it. When it does work, it works quickly– people start to see visible tumors shrinking in 1-2 weeks. But Zelboraf doesn't work in everyone. I have never heard of some of your symptoms being associated with Z– especially the blackouts, so I have to wonder if some of your problems are due to the tumors themselves.
Some patients who experience severe side effects from Zelboraf benefit by stopping Z for a week and then starting again at a lower dose. You might discuss that with your oncologist. I will be praying for you.
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- January 29, 2013 at 12:54 pm
Oh, Greg, you really are being put through the ringer, aren't you?! You are a poster child for the concept that sometimes the treatment is worse than the disease. Melanoma sucks!
I wonder if your oncologist told you that Zelboraf only works in 50-60% of the people who take it. When it does work, it works quickly– people start to see visible tumors shrinking in 1-2 weeks. But Zelboraf doesn't work in everyone. I have never heard of some of your symptoms being associated with Z– especially the blackouts, so I have to wonder if some of your problems are due to the tumors themselves.
Some patients who experience severe side effects from Zelboraf benefit by stopping Z for a week and then starting again at a lower dose. You might discuss that with your oncologist. I will be praying for you.
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- January 29, 2013 at 1:29 pm
Greg – I’m so sorry to hear this is such a miserable experience you for. You don’t say which BRAF you are taking, but it could very well be that some of these symptoms are drug related because of everything you’re taking, or from the tumors. Do you KNOW you are getting the drug as part of the trial? If its dabrafenib, maybe if its not working you could try switching to Zelboraf which I believe is commercially available in Aust now.Either way, push for a brain MRI. Those blackouts are scary business and your push hard on you dr. Remember sometimes they are more concerned about their trial data that the patient.
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- January 30, 2013 at 3:01 am
Hi Greg,
I just looked at your profile and since your sub-q’s disappeared, it does seem like you are a responder to the dabrafenib.
What does you’re oncologist say about these symptoms?
They sound potentially quite serious and I agree that you should have an MRI and other relevant tests done yesterday.
Also, the constipation increase could be caused by the narcotics.
I will keep you in my thoughts-please let us know what’s happening.
karen -
- January 30, 2013 at 3:01 am
Hi Greg,
I just looked at your profile and since your sub-q’s disappeared, it does seem like you are a responder to the dabrafenib.
What does you’re oncologist say about these symptoms?
They sound potentially quite serious and I agree that you should have an MRI and other relevant tests done yesterday.
Also, the constipation increase could be caused by the narcotics.
I will keep you in my thoughts-please let us know what’s happening.
karen -
- January 30, 2013 at 3:01 am
Hi Greg,
I just looked at your profile and since your sub-q’s disappeared, it does seem like you are a responder to the dabrafenib.
What does you’re oncologist say about these symptoms?
They sound potentially quite serious and I agree that you should have an MRI and other relevant tests done yesterday.
Also, the constipation increase could be caused by the narcotics.
I will keep you in my thoughts-please let us know what’s happening.
karen
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- January 29, 2013 at 1:29 pm
Greg – I’m so sorry to hear this is such a miserable experience you for. You don’t say which BRAF you are taking, but it could very well be that some of these symptoms are drug related because of everything you’re taking, or from the tumors. Do you KNOW you are getting the drug as part of the trial? If its dabrafenib, maybe if its not working you could try switching to Zelboraf which I believe is commercially available in Aust now.Either way, push for a brain MRI. Those blackouts are scary business and your push hard on you dr. Remember sometimes they are more concerned about their trial data that the patient.
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- January 29, 2013 at 1:29 pm
Greg – I’m so sorry to hear this is such a miserable experience you for. You don’t say which BRAF you are taking, but it could very well be that some of these symptoms are drug related because of everything you’re taking, or from the tumors. Do you KNOW you are getting the drug as part of the trial? If its dabrafenib, maybe if its not working you could try switching to Zelboraf which I believe is commercially available in Aust now.Either way, push for a brain MRI. Those blackouts are scary business and your push hard on you dr. Remember sometimes they are more concerned about their trial data that the patient.
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- January 30, 2013 at 7:07 am
Hi Greg
I am on Dabrafenib (non-MEK combo) since Nov 2012. I have experienced a lot of the expected side effects – hair loss, rashes come and go, intermittent joint pain. Before I started Dabrafenib, I was diagnosed with 2 brain mets – this diagnosis was prompted by some of the symtpoms you describe – tremors, nausea, headache that would not go away, intermittent inability to write coherent text messages/emails. I agree with AWillet – some of your symptoms sound like neuro-symptoms so push for an MRI asap.
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- January 30, 2013 at 7:07 am
Hi Greg
I am on Dabrafenib (non-MEK combo) since Nov 2012. I have experienced a lot of the expected side effects – hair loss, rashes come and go, intermittent joint pain. Before I started Dabrafenib, I was diagnosed with 2 brain mets – this diagnosis was prompted by some of the symtpoms you describe – tremors, nausea, headache that would not go away, intermittent inability to write coherent text messages/emails. I agree with AWillet – some of your symptoms sound like neuro-symptoms so push for an MRI asap.
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- January 30, 2013 at 7:07 am
Hi Greg
I am on Dabrafenib (non-MEK combo) since Nov 2012. I have experienced a lot of the expected side effects – hair loss, rashes come and go, intermittent joint pain. Before I started Dabrafenib, I was diagnosed with 2 brain mets – this diagnosis was prompted by some of the symtpoms you describe – tremors, nausea, headache that would not go away, intermittent inability to write coherent text messages/emails. I agree with AWillet – some of your symptoms sound like neuro-symptoms so push for an MRI asap.
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- January 30, 2013 at 2:04 pm
Thank you to everyone that has replied to my post.
I had a meeting with my oncologist on Tuesday and he advised me that he does not believe that any of these side effects are being caused by the BRAF.
I have had more compliacations resulting from the constipation and am having an x-ray and ultrasound on my abdomen this Friday. My GP is of the opinion that I have developed a blockage in the bowel.
I requested to have a PET scan and should have the test in the next few days.
The BRAF I am on is : GSK2118436 DABRAFENIB (compassionate) 75g capsules ; 2 x 75g every 12 hours.
Thank you all once agaim for your kind words and thoughts.
I'll keep you posted as yo how I am progressing in t he coming days.
Greg
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- January 30, 2013 at 2:04 pm
Thank you to everyone that has replied to my post.
I had a meeting with my oncologist on Tuesday and he advised me that he does not believe that any of these side effects are being caused by the BRAF.
I have had more compliacations resulting from the constipation and am having an x-ray and ultrasound on my abdomen this Friday. My GP is of the opinion that I have developed a blockage in the bowel.
I requested to have a PET scan and should have the test in the next few days.
The BRAF I am on is : GSK2118436 DABRAFENIB (compassionate) 75g capsules ; 2 x 75g every 12 hours.
Thank you all once agaim for your kind words and thoughts.
I'll keep you posted as yo how I am progressing in t he coming days.
Greg
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- January 30, 2013 at 2:39 pm
Dabarfenib is a drug that is very similar to Zelboraf except it is made my a different company. Thereofre, I expect the side effects from dabrafenib would be the same as those from Zelboraf. Given the level of your distress, your GP may be correct– you may have an intestinal blockage. What did your doctors say about your blackouts? Are they ordering a brain MRI? Please do let us know the results of your tests this week. We will be praying for you.
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- January 30, 2013 at 2:39 pm
Dabarfenib is a drug that is very similar to Zelboraf except it is made my a different company. Thereofre, I expect the side effects from dabrafenib would be the same as those from Zelboraf. Given the level of your distress, your GP may be correct– you may have an intestinal blockage. What did your doctors say about your blackouts? Are they ordering a brain MRI? Please do let us know the results of your tests this week. We will be praying for you.
-
- January 30, 2013 at 2:39 pm
Dabarfenib is a drug that is very similar to Zelboraf except it is made my a different company. Thereofre, I expect the side effects from dabrafenib would be the same as those from Zelboraf. Given the level of your distress, your GP may be correct– you may have an intestinal blockage. What did your doctors say about your blackouts? Are they ordering a brain MRI? Please do let us know the results of your tests this week. We will be praying for you.
-
- January 30, 2013 at 2:04 pm
Thank you to everyone that has replied to my post.
I had a meeting with my oncologist on Tuesday and he advised me that he does not believe that any of these side effects are being caused by the BRAF.
I have had more compliacations resulting from the constipation and am having an x-ray and ultrasound on my abdomen this Friday. My GP is of the opinion that I have developed a blockage in the bowel.
I requested to have a PET scan and should have the test in the next few days.
The BRAF I am on is : GSK2118436 DABRAFENIB (compassionate) 75g capsules ; 2 x 75g every 12 hours.
Thank you all once agaim for your kind words and thoughts.
I'll keep you posted as yo how I am progressing in t he coming days.
Greg
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- January 30, 2013 at 10:02 pm
Greg, the beautiful part about GSK’s MEK inhibitor, is that it intensifies the BRAf inhibitor’s power to smother the cancer gene, and mollifies the adverse affects at the same time. This, I am told, is rare in pharmacology. Hang in there a few more months and see if you can’t take the combo, as rumor has it, it should be approved late Spring. I am in my 26th month, in the phase II/I trial with the combo, with very little side affects, and a great deal of success. I lovingly call them Smith & Wesson, the partners that continue to save me.As for the fainting maybe your brain is OK. I had low to normal BP, then she told me I had cancer, and took my BP…it was high…she gave me pills to lower it, and I started to faint quite often, until I stopped the pills. Could any of that be going on with you? Haven’t had a power failure in almost two years. Fight like Hell and stay alive with whatever is at hand, until the FDA decides to move a bit faster, pulls up its
stockings, and approves the drugs in combo that saved me and so many other BRAf positive fourth stagers. -
- January 30, 2013 at 10:02 pm
Greg, the beautiful part about GSK’s MEK inhibitor, is that it intensifies the BRAf inhibitor’s power to smother the cancer gene, and mollifies the adverse affects at the same time. This, I am told, is rare in pharmacology. Hang in there a few more months and see if you can’t take the combo, as rumor has it, it should be approved late Spring. I am in my 26th month, in the phase II/I trial with the combo, with very little side affects, and a great deal of success. I lovingly call them Smith & Wesson, the partners that continue to save me.As for the fainting maybe your brain is OK. I had low to normal BP, then she told me I had cancer, and took my BP…it was high…she gave me pills to lower it, and I started to faint quite often, until I stopped the pills. Could any of that be going on with you? Haven’t had a power failure in almost two years. Fight like Hell and stay alive with whatever is at hand, until the FDA decides to move a bit faster, pulls up its
stockings, and approves the drugs in combo that saved me and so many other BRAf positive fourth stagers.-
- February 1, 2013 at 3:27 am
Hi Everyone ,
Just an update to let you know that I think I am starting to come out the other side of my symptoms.
I feel the best today I have since beginning the BRAF.
Had the Ultrasound and Xray on the Bowel today and am waiting to hear about my appointment for the PET.
Had a blackout again last night , but , overall , am feeling great !!!!!!
Greg
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- February 1, 2013 at 3:27 am
Hi Everyone ,
Just an update to let you know that I think I am starting to come out the other side of my symptoms.
I feel the best today I have since beginning the BRAF.
Had the Ultrasound and Xray on the Bowel today and am waiting to hear about my appointment for the PET.
Had a blackout again last night , but , overall , am feeling great !!!!!!
Greg
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- February 1, 2013 at 3:27 am
Hi Everyone ,
Just an update to let you know that I think I am starting to come out the other side of my symptoms.
I feel the best today I have since beginning the BRAF.
Had the Ultrasound and Xray on the Bowel today and am waiting to hear about my appointment for the PET.
Had a blackout again last night , but , overall , am feeling great !!!!!!
Greg
-
- January 30, 2013 at 10:02 pm
Greg, the beautiful part about GSK’s MEK inhibitor, is that it intensifies the BRAf inhibitor’s power to smother the cancer gene, and mollifies the adverse affects at the same time. This, I am told, is rare in pharmacology. Hang in there a few more months and see if you can’t take the combo, as rumor has it, it should be approved late Spring. I am in my 26th month, in the phase II/I trial with the combo, with very little side affects, and a great deal of success. I lovingly call them Smith & Wesson, the partners that continue to save me.As for the fainting maybe your brain is OK. I had low to normal BP, then she told me I had cancer, and took my BP…it was high…she gave me pills to lower it, and I started to faint quite often, until I stopped the pills. Could any of that be going on with you? Haven’t had a power failure in almost two years. Fight like Hell and stay alive with whatever is at hand, until the FDA decides to move a bit faster, pulls up its
stockings, and approves the drugs in combo that saved me and so many other BRAf positive fourth stagers.
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