› Forums › General Melanoma Community › Getting resistant to the Braf/Mek combo
- This topic has 21 replies, 5 voices, and was last updated 9 years ago by
MELK.
- Post
-
- April 21, 2016 at 3:52 am
Hi All,
This is my first post.
I was misdiagnosed with stage IV breast cancer in August 2014, and put on chemo for 4 months. This misdiagnosis was because I had a tumor in my breast and it is very unusual for melanoma to metastasize to the breast. I also had lesions in my lungs, liver and bones.
I was given Braf/Mek combo in January of 2015. It worked. Lots of my tumors were gone, only a couple in the liver remained. I was feeling really well. I had been doing lots of bush walking and going to the gym. I had gone back to work and was feeling great.
In January, 2016, I went to the gym and the next day I thought I must have overdone it, as that’s what the pain felt like. After three days though, the Panadol were not working. I had really strong pain all around my rib cage, in my legs and my arms. I saw a GP to get some stronger pain killers and found out I had very low oxygen levels, so I went to hospital.
My bloods were quite alarming. My haemoglobin and platelets were very low and my LDH reached 21,000. My oncologist and his team were puzzled. I also had some fluid on the lungs, which I had drained and analysed for any infection or cancer cells. No infection or cancer cells found in the fluid. I also had an MRI of my spine and a biopsy of my bone marrow. The cancer had gone into my bone marrow. At first my Oncologist thought it could be a completely different cancer, but it was determined it was the melanoma. Apparently it is very unusual that melanoma metastasize into the bone marrow. I not only had the cancer spread to my bone marrow, but I had more tumors/lesions in my liver and many in my thoracic and lumbar vertebrae and pelvis. I was on high doses of Oxycodone and I had to have several blood and platelet transfusions. Then I was put on Keytruda.
After a week or so and a few more blood transfusions, my bloods came right and I went home from hospital. I was there for 21 days. I was so not expecting “getting resistant” to look like that.
I am having some success with the Keytruda, although experiencing some auto immune of the liver and we are dealing with that presently.
Mel
- Replies
-
-
- April 21, 2016 at 12:27 pm
Welcome! I have found this to be the best site for calm, smart responses. My 18 yr old son had progression w 9 months of keytruda and has started the Mek/Taf combo. This is exactly my fear. I have had several stories of short response but worse the fallout is fast and furious! Without having a PD1 to fall back on this is difficult. However, we do go from treatment to treatment. What do you all think about a shorter time on the combo then moving straight to ipi?
For us the keytruda did work on some tumors quickly! Hope this can shrink your Mets and help w the pain. Prayers for few side effects as these are so different for everyone. Stay in touch!
kerri–momofjake
-
- April 21, 2016 at 12:27 pm
Welcome! I have found this to be the best site for calm, smart responses. My 18 yr old son had progression w 9 months of keytruda and has started the Mek/Taf combo. This is exactly my fear. I have had several stories of short response but worse the fallout is fast and furious! Without having a PD1 to fall back on this is difficult. However, we do go from treatment to treatment. What do you all think about a shorter time on the combo then moving straight to ipi?
For us the keytruda did work on some tumors quickly! Hope this can shrink your Mets and help w the pain. Prayers for few side effects as these are so different for everyone. Stay in touch!
kerri–momofjake
-
- April 21, 2016 at 8:15 pm
Kerri,
my father has been on BRAF/MEK inhibitor combo for 16 months now.
It is definitely true that a good number of patients develop resistance within 12/14 months. But that doesn't mean everyone does.
As Dr. Jeffrey Weber, NYU, says
The “urban legend” was that the BRAF and MEK inhibitors had a high response rate, but almost all of the patients would progress quickly, progression-free survival would be less than 1 year, and most patients would have to go on another therapy or would die of their disease.
That’s not exactly true. There does appear to be a plateau in the curve at about 30% for the patients who receive dabrafenib and trametinib. I am sure it will be virtually identical for vemurafenib and cobimetinib, which have a very similar median survival and 1-year survival track record as dabrafenib and trametinib. –Full interview at: http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma#sthash.fbKt4WQw.dpuf
So if your son responds, there is a significant chance that the response will be durable.
This diseases is unpredictable, and every patient has his/her own specific responses to treatments, that are impossible to predict in advance. I truly hope your son will be among that 30% whose response lasts long term.
Guido
-
- April 21, 2016 at 8:15 pm
Kerri,
my father has been on BRAF/MEK inhibitor combo for 16 months now.
It is definitely true that a good number of patients develop resistance within 12/14 months. But that doesn't mean everyone does.
As Dr. Jeffrey Weber, NYU, says
The “urban legend” was that the BRAF and MEK inhibitors had a high response rate, but almost all of the patients would progress quickly, progression-free survival would be less than 1 year, and most patients would have to go on another therapy or would die of their disease.
That’s not exactly true. There does appear to be a plateau in the curve at about 30% for the patients who receive dabrafenib and trametinib. I am sure it will be virtually identical for vemurafenib and cobimetinib, which have a very similar median survival and 1-year survival track record as dabrafenib and trametinib. –Full interview at: http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma#sthash.fbKt4WQw.dpuf
So if your son responds, there is a significant chance that the response will be durable.
This diseases is unpredictable, and every patient has his/her own specific responses to treatments, that are impossible to predict in advance. I truly hope your son will be among that 30% whose response lasts long term.
Guido
-
- April 21, 2016 at 8:15 pm
Kerri,
my father has been on BRAF/MEK inhibitor combo for 16 months now.
It is definitely true that a good number of patients develop resistance within 12/14 months. But that doesn't mean everyone does.
As Dr. Jeffrey Weber, NYU, says
The “urban legend” was that the BRAF and MEK inhibitors had a high response rate, but almost all of the patients would progress quickly, progression-free survival would be less than 1 year, and most patients would have to go on another therapy or would die of their disease.
That’s not exactly true. There does appear to be a plateau in the curve at about 30% for the patients who receive dabrafenib and trametinib. I am sure it will be virtually identical for vemurafenib and cobimetinib, which have a very similar median survival and 1-year survival track record as dabrafenib and trametinib. –Full interview at: http://www.onclive.com/web-exclusives/weber-compares-brafmek-immunotherapy-combos-in-melanoma#sthash.fbKt4WQw.dpuf
So if your son responds, there is a significant chance that the response will be durable.
This diseases is unpredictable, and every patient has his/her own specific responses to treatments, that are impossible to predict in advance. I truly hope your son will be among that 30% whose response lasts long term.
Guido
-
- April 21, 2016 at 11:50 pm
Hi Kerri, thanks for your reply.
I know researchers are working on trying to stop the resistance of the targeted therapy, so you never know. The average to get resistant is one year, but hopefully your son goes longer and by then they have figured it out.I hadnt heard or read that when resistance occurs, it can be fast and furious. I expected to be going along and then finding out via a CT scan that the tumors had grown. So at least you are aware and prepared. Stay positive and believe in the treatment, its a better way to live.
-
- April 21, 2016 at 11:50 pm
Hi Kerri, thanks for your reply.
I know researchers are working on trying to stop the resistance of the targeted therapy, so you never know. The average to get resistant is one year, but hopefully your son goes longer and by then they have figured it out.I hadnt heard or read that when resistance occurs, it can be fast and furious. I expected to be going along and then finding out via a CT scan that the tumors had grown. So at least you are aware and prepared. Stay positive and believe in the treatment, its a better way to live.
-
- April 21, 2016 at 11:50 pm
Hi Kerri, thanks for your reply.
I know researchers are working on trying to stop the resistance of the targeted therapy, so you never know. The average to get resistant is one year, but hopefully your son goes longer and by then they have figured it out.I hadnt heard or read that when resistance occurs, it can be fast and furious. I expected to be going along and then finding out via a CT scan that the tumors had grown. So at least you are aware and prepared. Stay positive and believe in the treatment, its a better way to live.
-
- May 3, 2016 at 6:39 pm
Hey Kerri how is Jake doing on the Mek/taf combo? Haven’t seen you posting in awhile so I hope thats because he’s doing well! -
- May 3, 2016 at 6:39 pm
Hey Kerri how is Jake doing on the Mek/taf combo? Haven’t seen you posting in awhile so I hope thats because he’s doing well! -
- May 3, 2016 at 6:39 pm
Hey Kerri how is Jake doing on the Mek/taf combo? Haven’t seen you posting in awhile so I hope thats because he’s doing well!
-
- April 21, 2016 at 12:27 pm
Welcome! I have found this to be the best site for calm, smart responses. My 18 yr old son had progression w 9 months of keytruda and has started the Mek/Taf combo. This is exactly my fear. I have had several stories of short response but worse the fallout is fast and furious! Without having a PD1 to fall back on this is difficult. However, we do go from treatment to treatment. What do you all think about a shorter time on the combo then moving straight to ipi?
For us the keytruda did work on some tumors quickly! Hope this can shrink your Mets and help w the pain. Prayers for few side effects as these are so different for everyone. Stay in touch!
kerri–momofjake
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- April 30, 2016 at 11:13 pm
My brother was on BRAF/MEK for 16 months, then progression, went off for a year, then went BACK ON for second time and got another 16 months of great results. I have read you only need to be off for a few months to build resistence again. DISCUSS this with your doctor. My brother was the one who told the doctor he wanted to go back on the pills. The doctor agreed, said lets give it a month and see and it worked.
PLEASE DISCUSS THIS AS AN OPTION with your doctor.
-
- You must be logged in to reply to this topic.