MEK Trial VS Yervoy – HELP – Melanoma Research Foundation

This topic has 16 replies, 5 voices, and was last updated 13 years, 8 months ago by ddevito1224.

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- September 10, 2011 at 8:48 pm
- Quote
Steve in Detroit
Participant
The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

Hello all…

The following was posted acidentaly by "kris herrington" in the "off topic" forum and I am re-posting for her. Thank you in advance for any advice for Kris

Hello all…

Got a big decision to make…and I'm looking for some advice. I am stage 4. met in my lungs and abdomen, all over really. I just finished taking the BRAF Plexxicon drug in august, since being off the drug the mets have gone crazy and are increasing rapidly. I am BRAF V600K, not V600E so they think thats why I may not have responded to the Plexxicon. I was just rejected at the NIH for the TIL trial. So now my options are to start the MEK trial or start on Yeroy.

The trial doctor doesn't have any stats on the MEK except to tell me that people that did not respond to the Plexxicon did respond to the MEK, but couldn't tell me much more.

My oncologist tells me to start Yeroy that I need something different than a BRAF drug. I'm concerned about the Yeroy as it is very toxic and that the response rates are so low. I was told today that the overall survival was 2.1 months but that others, less than 10% of the people were out 1-3 years.

If I take the Yeroy now, it basically excludes me from any trials at this time if it doesn't work. All I got left is chemo and we all know this doesn't have great results.

I progressed slightly on the Plexxicon (2011)

Did not respond to IL-2 (2011)

Did not respond to Interferon (2009)

Soo I'll take any suggestions, advice, stories.. anything… HELP!!!

Kris

Viewing 5 reply threads

Replies

- - September 12, 2011 at 3:42 pm
  - Quote
  chenrydh
  Participant
  Kris –
  
  I'm sorry for you've got decisions to make as it's hard enough fighting this disease then add all the treatment stress to it. I can only speak for myself – but Yervoy (formerly IPI) has kept me here on this earth. I've don't look at statistics, nor do my drs. share it with me as I feel the only one that truly knows when it's my time is God. Honestly, I've been fighting this disease since late 2008 with brain mets since 2009. I know by what I've heard that by statistics I shouldn't be here but I'm blessed to still be fighting. I did the IPI in clinical trial and didn't have much success, did it again after it was FDA approved and it worked greatly by shrinking all tumors and not having anymore mets at this time. I currently have melanoma in my lungs, stomach and brain. I was taken off the Yervoy due to the fact it was destroying my immune system but I'm going to be hopefully starting it again in the next week. Also along with the IPI I did Temodar. My side effects were pretty standard but I will admit the rash and itching drove me crazy. I know everyone responds differently to each treatment and you have to decide what's best for you but for me personally I say IPI (Yervoy) totally rocks.
  
  I will keep you in my prayers that you make the right decision for you and that you continue to fight this demon and that you can get into stablization, remission or even NED. Remember anything is possible is you just believe.
  
  Prayers –
  
  Chris
- - September 12, 2011 at 3:42 pm
  - Quote
  chenrydh
  Participant
  Kris –
  
  I'm sorry for you've got decisions to make as it's hard enough fighting this disease then add all the treatment stress to it. I can only speak for myself – but Yervoy (formerly IPI) has kept me here on this earth. I've don't look at statistics, nor do my drs. share it with me as I feel the only one that truly knows when it's my time is God. Honestly, I've been fighting this disease since late 2008 with brain mets since 2009. I know by what I've heard that by statistics I shouldn't be here but I'm blessed to still be fighting. I did the IPI in clinical trial and didn't have much success, did it again after it was FDA approved and it worked greatly by shrinking all tumors and not having anymore mets at this time. I currently have melanoma in my lungs, stomach and brain. I was taken off the Yervoy due to the fact it was destroying my immune system but I'm going to be hopefully starting it again in the next week. Also along with the IPI I did Temodar. My side effects were pretty standard but I will admit the rash and itching drove me crazy. I know everyone responds differently to each treatment and you have to decide what's best for you but for me personally I say IPI (Yervoy) totally rocks.
  
  I will keep you in my prayers that you make the right decision for you and that you continue to fight this demon and that you can get into stablization, remission or even NED. Remember anything is possible is you just believe.
  
  Prayers –
  
  Chris
- - September 12, 2011 at 3:42 pm
  - Quote
  chenrydh
  Participant
  Kris –
  
  I'm sorry for you've got decisions to make as it's hard enough fighting this disease then add all the treatment stress to it. I can only speak for myself – but Yervoy (formerly IPI) has kept me here on this earth. I've don't look at statistics, nor do my drs. share it with me as I feel the only one that truly knows when it's my time is God. Honestly, I've been fighting this disease since late 2008 with brain mets since 2009. I know by what I've heard that by statistics I shouldn't be here but I'm blessed to still be fighting. I did the IPI in clinical trial and didn't have much success, did it again after it was FDA approved and it worked greatly by shrinking all tumors and not having anymore mets at this time. I currently have melanoma in my lungs, stomach and brain. I was taken off the Yervoy due to the fact it was destroying my immune system but I'm going to be hopefully starting it again in the next week. Also along with the IPI I did Temodar. My side effects were pretty standard but I will admit the rash and itching drove me crazy. I know everyone responds differently to each treatment and you have to decide what's best for you but for me personally I say IPI (Yervoy) totally rocks.
  
  I will keep you in my prayers that you make the right decision for you and that you continue to fight this demon and that you can get into stablization, remission or even NED. Remember anything is possible is you just believe.
  
  Prayers –
  
  Chris
- - September 12, 2011 at 3:42 pm
  - Quote
  chenrydh
  Participant
  Kris –
  
  I'm sorry for you've got decisions to make as it's hard enough fighting this disease then add all the treatment stress to it. I can only speak for myself – but Yervoy (formerly IPI) has kept me here on this earth. I've don't look at statistics, nor do my drs. share it with me as I feel the only one that truly knows when it's my time is God. Honestly, I've been fighting this disease since late 2008 with brain mets since 2009. I know by what I've heard that by statistics I shouldn't be here but I'm blessed to still be fighting. I did the IPI in clinical trial and didn't have much success, did it again after it was FDA approved and it worked greatly by shrinking all tumors and not having anymore mets at this time. I currently have melanoma in my lungs, stomach and brain. I was taken off the Yervoy due to the fact it was destroying my immune system but I'm going to be hopefully starting it again in the next week. Also along with the IPI I did Temodar. My side effects were pretty standard but I will admit the rash and itching drove me crazy. I know everyone responds differently to each treatment and you have to decide what's best for you but for me personally I say IPI (Yervoy) totally rocks.
  
  I will keep you in my prayers that you make the right decision for you and that you continue to fight this demon and that you can get into stablization, remission or even NED. Remember anything is possible is you just believe.
  
  Prayers –
  
  Chris
  - September 12, 2011 at 3:44 pm
    
    Quote
    chenrydh
    Participant
    
    Sorry meant to address my reply to Steve –
  - September 12, 2011 at 3:44 pm
    
    Quote
    chenrydh
    Participant
    
    Sorry meant to address my reply to Steve –
- - September 12, 2011 at 4:18 pm
  - Quote
  jim Breitfeller
  Participant
  Steve,
  
  you might want to look into combination studies with MEK as one of the drugs. See the research paper below. You may want to take a copy to your next Dr. visit.
  
  Targeting BRAF for patients with melanoma
  
  http://www.box.net/shared/a130itmxvb
  
  RELEVANCE OF THE AKT PATHWAY
  
  "Preclinical studies have demonstrated a close interconnection of the RAS-RAF-MEK-ERK and the PI3K-AKT-mTOR signalling pathways, with complex inter-related feedback loops. For example, NRAS is mutated in about 15% of melanoma and can activate both the signalling pathways. Although BRAF and NRAS mutations are mutually exclusive in the majority of melanomas, dual pathway signalling is also frequently seen in melanoma through functional loss (deletion, silencing and/or mutation) of the tumour suppressor gene PTEN."
  
  I thought you might like to know.
  
  Jimmy B
- - September 12, 2011 at 4:18 pm
  - Quote
  jim Breitfeller
  Participant
  Steve,
  
  you might want to look into combination studies with MEK as one of the drugs. See the research paper below. You may want to take a copy to your next Dr. visit.
  
  Targeting BRAF for patients with melanoma
  
  http://www.box.net/shared/a130itmxvb
  
  RELEVANCE OF THE AKT PATHWAY
  
  "Preclinical studies have demonstrated a close interconnection of the RAS-RAF-MEK-ERK and the PI3K-AKT-mTOR signalling pathways, with complex inter-related feedback loops. For example, NRAS is mutated in about 15% of melanoma and can activate both the signalling pathways. Although BRAF and NRAS mutations are mutually exclusive in the majority of melanomas, dual pathway signalling is also frequently seen in melanoma through functional loss (deletion, silencing and/or mutation) of the tumour suppressor gene PTEN."
  
  I thought you might like to know.
  
  Jimmy B
  - September 12, 2011 at 8:20 pm
    
    Quote
    killmel
    Participant
    
    Jimmy,
    
    Thank you for all your pots & sharing your knowledge.
    
    I am a little stupid & read the article that you posted.
    
    Is the article saying that doing a COMBO BRAF/MEK trial is better than just doing a BRAF alone or MEK trial alone?
    
    Lil stupid
  - September 12, 2011 at 8:20 pm
    
    Quote
    killmel
    Participant
    
    Jimmy,
    
    Thank you for all your pots & sharing your knowledge.
    
    I am a little stupid & read the article that you posted.
    
    Is the article saying that doing a COMBO BRAF/MEK trial is better than just doing a BRAF alone or MEK trial alone?
    
    Lil stupid
  - September 12, 2011 at 8:40 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Yes, you block two pathways, instead of one.
    
    You may want to look for Clinical trials with BRAF + MEK + ERK. Your oncologist can help you.
  - September 12, 2011 at 8:40 pm
    
    Quote
    jim Breitfeller
    Participant
    
    Yes, you block two pathways, instead of one.
    
    You may want to look for Clinical trials with BRAF + MEK + ERK. Your oncologist can help you.
  - September 13, 2011 at 7:59 pm
    
    Quote
    JerryfromFauq
    Participant
    
    Thanks for the article, Jimmy. One interesting thing is that it discusses more than just basic BRAF. This was the first time I have seen mention of there being at least 75 BRAF mutations. (Of course I found the C-kit discussions interesting.) If I interpret the article correctly, the anti-BRAF line of attack should provide approximately 40% of melanoma patients with at least a short time benefit. Now to get further signaling pathways blocked during that time.
  - September 13, 2011 at 7:59 pm
    
    Quote
    JerryfromFauq
    Participant
    
    Thanks for the article, Jimmy. One interesting thing is that it discusses more than just basic BRAF. This was the first time I have seen mention of there being at least 75 BRAF mutations. (Of course I found the C-kit discussions interesting.) If I interpret the article correctly, the anti-BRAF line of attack should provide approximately 40% of melanoma patients with at least a short time benefit. Now to get further signaling pathways blocked during that time.
  - September 16, 2011 at 6:11 pm
    
    Quote
    ddevito1224
    Participant
    
    Hello,
    
    My friend was on GSK's braf drug and started to progress…she had mets in lungs, liver, pancreas and lymph node. Doc moved her immediately to BRAF/MEK combo trial. All her mets are now gone save for the pancreas which has shrunk to be barely visible. I would recommend the combo trial if you can get in one.
  - September 16, 2011 at 6:11 pm
    
    Quote
    ddevito1224
    Participant
    
    Hello,
    
    My friend was on GSK's braf drug and started to progress…she had mets in lungs, liver, pancreas and lymph node. Doc moved her immediately to BRAF/MEK combo trial. All her mets are now gone save for the pancreas which has shrunk to be barely visible. I would recommend the combo trial if you can get in one.