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5 years NED 3c…then THIS happened!

Forums General Melanoma Community 5 years NED 3c…then THIS happened!

  • Post
    mom3girlsFL
    Participant

    Hi Everyone,

    It has been a very long time since I've been here.  I guess after so many clean scans and decent health I just went about life.  I really, truly NEVER thought I'd find my way back here.  I guess I am searching for some positive feedback as I begin a new melanoma journey.  I don't know why this time feels different, but I am a bit freaked out – unusual because I've always prided myself with a strong and positive outlook.  Maybe it's because the past two weeks have been unbelievable and I've just now let myself settle with all the news?

    I promise to update my profile soon but briefly my history with mel started in 2003 stage 1 surgery, all cured. In 2010 I had recurrence in my groin lymph nodes, had surgery and did hd interferon for a month and 1 month self injection but stopped due to recurrence.  Had surgery again and have had clean scans until two weeks ago.  Through CT , PET and biopsy I have multiple enlarged retroperitoneal nodes, para aortic nodes, and lung node involvement.  Several of the nodes measure up to and slightly above 2 cm.

    Oncologist is starting me on Tafinlar and Mekinist.  This process just started yesterday so I should hear from pharmacy by the end of the week.  Ive read it is very expensive.  Onc also wants me to have surgery consult, which i have scheduled Thursday, but he feels there are too many to consider surgery at this point.  I am also having Brain MRI Thursday.

    I feel like I have been living in the twilight zone for two weeks.  It broke my heart to tell my husband and children.  They were so young before and they still are.  My oldest is special needs, almost 17.  My other two are (almost) 15, and 12.

    PLEASE tell me your good stories and your positive experience with taf/mek, but please tell me also what to expect, no sugar coating!  I am scared.

    God Bless this MPIP community!

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  • Replies
      RaquelP
      Participant

      Where are you being seen? Your username suggest FL, possibly? I would get a second opinion at Moffit if possible. Not because your doctor is wrong, but I wonder if you had treatment options presented to you. If not, you should have. What you will hear on the forum is that the BRAF inhibitors usually only run their course for about 8-10 months. Of course there are always exceptions to the rule.

      How are you feeling? If you are feeling overall healthy, I would suggest looking into the PD1 drugs as they are showing the most promise for a durable response, and in lung mets in particular.

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      RaquelP
      Participant

      Where are you being seen? Your username suggest FL, possibly? I would get a second opinion at Moffit if possible. Not because your doctor is wrong, but I wonder if you had treatment options presented to you. If not, you should have. What you will hear on the forum is that the BRAF inhibitors usually only run their course for about 8-10 months. Of course there are always exceptions to the rule.

      How are you feeling? If you are feeling overall healthy, I would suggest looking into the PD1 drugs as they are showing the most promise for a durable response, and in lung mets in particular.

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      RaquelP
      Participant

      Where are you being seen? Your username suggest FL, possibly? I would get a second opinion at Moffit if possible. Not because your doctor is wrong, but I wonder if you had treatment options presented to you. If not, you should have. What you will hear on the forum is that the BRAF inhibitors usually only run their course for about 8-10 months. Of course there are always exceptions to the rule.

      How are you feeling? If you are feeling overall healthy, I would suggest looking into the PD1 drugs as they are showing the most promise for a durable response, and in lung mets in particular.

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      Mat
      Participant

      Sorry to hear.  Sounds like you have a relatively light tumor burden.  If it were me, I'd go for the expanded access ipi-nivo trial.  This should be available at Moffitt.  I'd only start with BRAF-MEK with a heavy tumor burden.  You can always do BRAF-MEK later.  Of course, it is important to have the brain checked, which you are doing, as this could influence treatment.

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      Mat
      Participant

      Sorry to hear.  Sounds like you have a relatively light tumor burden.  If it were me, I'd go for the expanded access ipi-nivo trial.  This should be available at Moffitt.  I'd only start with BRAF-MEK with a heavy tumor burden.  You can always do BRAF-MEK later.  Of course, it is important to have the brain checked, which you are doing, as this could influence treatment.

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        jamieth29
        Participant
        I think it all depends on the context of what the doctor’s plans are. My doctor put me on braf inhibitors solely for them to work quickly and get me surgically resectable. I had one lymph node lite up that was 18mm, it shrunk to 7mm in 6 weeks. My doctor is going to pull me off braf drugs after surgery and start me on immunotherapy. He also said the drugs should work at a later date if we need them.

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        jamieth29
        Participant
        I think it all depends on the context of what the doctor’s plans are. My doctor put me on braf inhibitors solely for them to work quickly and get me surgically resectable. I had one lymph node lite up that was 18mm, it shrunk to 7mm in 6 weeks. My doctor is going to pull me off braf drugs after surgery and start me on immunotherapy. He also said the drugs should work at a later date if we need them.

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        jamieth29
        Participant
        I think it all depends on the context of what the doctor’s plans are. My doctor put me on braf inhibitors solely for them to work quickly and get me surgically resectable. I had one lymph node lite up that was 18mm, it shrunk to 7mm in 6 weeks. My doctor is going to pull me off braf drugs after surgery and start me on immunotherapy. He also said the drugs should work at a later date if we need them.

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      Mat
      Participant

      Sorry to hear.  Sounds like you have a relatively light tumor burden.  If it were me, I'd go for the expanded access ipi-nivo trial.  This should be available at Moffitt.  I'd only start with BRAF-MEK with a heavy tumor burden.  You can always do BRAF-MEK later.  Of course, it is important to have the brain checked, which you are doing, as this could influence treatment.

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      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

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      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

      Loading spinner
      mom3girlsFL
      Participant

      Thank you all for your responses. If i am not mistaken, PD1 is immunotherapy?  If so, my oncologist is hesitant t put me on ANY immunotherapies as i have an auto-immune disease (Sjogren's Syndrome) and would not do well – I did horribly on interferon. A last resort I'm thnking.

      I also believe he is hoping for tumor shrinkage as well, followed by surgery, as an option.

      As for Moffit, i was there years ago (last battle) and saw Dr Weber. Due to my compromised immune system he did not even want me on interferon, just surgery and"watch and wait". I was not comfortable with that approach. I am very happy with the care i am receiving now, and my oncologist's group is now part of florida hospitals cancer center so i feel i am in good hands

      I will know more after brain mri and will post results.

      I know taf/mek is a temporary fix, but i have read about complete responders. Am i in complete denial?

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      RaquelP
      Participant

      You are absolutely not in denial. There are members on this forum who have been on inhibitors for quite some time. Each doctor has a different approach and the truth is no one has it all figured out, but thankfully there are options! I have a friend who has an autoimmune disease and is on Keytruda and is doing excellent. But I understand your doctor's reason for concern as there is a justifiable reason for having concern.

       

      Sounds like you are happy with your treatment plan. If you do a search on this forum, you will be able to see many threads on the braf inhibitors as it has been discuss in length. I believe combining with MEK can reduce the side effects and prolong the response, but each person is different.

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      RaquelP
      Participant

      You are absolutely not in denial. There are members on this forum who have been on inhibitors for quite some time. Each doctor has a different approach and the truth is no one has it all figured out, but thankfully there are options! I have a friend who has an autoimmune disease and is on Keytruda and is doing excellent. But I understand your doctor's reason for concern as there is a justifiable reason for having concern.

       

      Sounds like you are happy with your treatment plan. If you do a search on this forum, you will be able to see many threads on the braf inhibitors as it has been discuss in length. I believe combining with MEK can reduce the side effects and prolong the response, but each person is different.

      Loading spinner
      RaquelP
      Participant

      You are absolutely not in denial. There are members on this forum who have been on inhibitors for quite some time. Each doctor has a different approach and the truth is no one has it all figured out, but thankfully there are options! I have a friend who has an autoimmune disease and is on Keytruda and is doing excellent. But I understand your doctor's reason for concern as there is a justifiable reason for having concern.

       

      Sounds like you are happy with your treatment plan. If you do a search on this forum, you will be able to see many threads on the braf inhibitors as it has been discuss in length. I believe combining with MEK can reduce the side effects and prolong the response, but each person is different.

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      Bakerman1960
      Participant

      To say what to expect can be difficult. These drugs and treatments can react to each of us individually. Digestive issues are a common theme and live culture yogurts like Activia etc. seemed to help. A food journal can be helpful. record what you feel within an hour after eating something than also 4 hours later. This can help clue you in an what your body tolerates and what it craves. Trust your body to know what it wants. Be cautous with supplemts or herbal medications of any kind (including herbal teas)  and discuss with your doctor  before using any. I brought up herbal teas and these alos can be helpful but, like I said, discuss this with your doctor. 

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      Bakerman1960
      Participant

      To say what to expect can be difficult. These drugs and treatments can react to each of us individually. Digestive issues are a common theme and live culture yogurts like Activia etc. seemed to help. A food journal can be helpful. record what you feel within an hour after eating something than also 4 hours later. This can help clue you in an what your body tolerates and what it craves. Trust your body to know what it wants. Be cautous with supplemts or herbal medications of any kind (including herbal teas)  and discuss with your doctor  before using any. I brought up herbal teas and these alos can be helpful but, like I said, discuss this with your doctor. 

      Loading spinner
      Bakerman1960
      Participant

      To say what to expect can be difficult. These drugs and treatments can react to each of us individually. Digestive issues are a common theme and live culture yogurts like Activia etc. seemed to help. A food journal can be helpful. record what you feel within an hour after eating something than also 4 hours later. This can help clue you in an what your body tolerates and what it craves. Trust your body to know what it wants. Be cautous with supplemts or herbal medications of any kind (including herbal teas)  and discuss with your doctor  before using any. I brought up herbal teas and these alos can be helpful but, like I said, discuss this with your doctor. 

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      Momofjake
      Participant

      We all know how you are feeling here. Nothing in your life looks quite the same. It's a strange time. It's a journey that requires you to dig deep, real deep. You will. 

      My 18yr old son has a heavy tumor load(everywhere, liver, lungs, bones, spine…) and he was able to start the immune therapy keytruda without any other drugs first. (Well after biochemo and radiation and 5 surgeries in 9 months)I actually worried if he could last until the drug kicked in as it takes a few weeks or more usually. He just had his 3 mo scan. Half the cancer is gone. The rest less active. One new tumor. For us it was a huge blessing to not have to go through 3 other drugs(good as they are) to get to the most recently approved. He is up and going for the first time since diagnosis one year ago. It was SO fast from a freckle on his scalp to giant surgeries, biochemo, radiation…it just kept spreading. I thought I would say goodbye to him this summer!! But we kept fighting. Everyday!!! And he graduated. He is 20 min away at college with his brother. It's bazaar, we are like normal people…just living!! It's awesome. There are immune therapies that work!! Your life can be quiet and near normal again….only you appreciate every minute! You got this! Ponder, pray, educate yourself. You will know what path to take!! 

      We will keep you in our prayers–they work!

      kerri–mom of jake

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      Momofjake
      Participant

      We all know how you are feeling here. Nothing in your life looks quite the same. It's a strange time. It's a journey that requires you to dig deep, real deep. You will. 

      My 18yr old son has a heavy tumor load(everywhere, liver, lungs, bones, spine…) and he was able to start the immune therapy keytruda without any other drugs first. (Well after biochemo and radiation and 5 surgeries in 9 months)I actually worried if he could last until the drug kicked in as it takes a few weeks or more usually. He just had his 3 mo scan. Half the cancer is gone. The rest less active. One new tumor. For us it was a huge blessing to not have to go through 3 other drugs(good as they are) to get to the most recently approved. He is up and going for the first time since diagnosis one year ago. It was SO fast from a freckle on his scalp to giant surgeries, biochemo, radiation…it just kept spreading. I thought I would say goodbye to him this summer!! But we kept fighting. Everyday!!! And he graduated. He is 20 min away at college with his brother. It's bazaar, we are like normal people…just living!! It's awesome. There are immune therapies that work!! Your life can be quiet and near normal again….only you appreciate every minute! You got this! Ponder, pray, educate yourself. You will know what path to take!! 

      We will keep you in our prayers–they work!

      kerri–mom of jake

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      Momofjake
      Participant

      We all know how you are feeling here. Nothing in your life looks quite the same. It's a strange time. It's a journey that requires you to dig deep, real deep. You will. 

      My 18yr old son has a heavy tumor load(everywhere, liver, lungs, bones, spine…) and he was able to start the immune therapy keytruda without any other drugs first. (Well after biochemo and radiation and 5 surgeries in 9 months)I actually worried if he could last until the drug kicked in as it takes a few weeks or more usually. He just had his 3 mo scan. Half the cancer is gone. The rest less active. One new tumor. For us it was a huge blessing to not have to go through 3 other drugs(good as they are) to get to the most recently approved. He is up and going for the first time since diagnosis one year ago. It was SO fast from a freckle on his scalp to giant surgeries, biochemo, radiation…it just kept spreading. I thought I would say goodbye to him this summer!! But we kept fighting. Everyday!!! And he graduated. He is 20 min away at college with his brother. It's bazaar, we are like normal people…just living!! It's awesome. There are immune therapies that work!! Your life can be quiet and near normal again….only you appreciate every minute! You got this! Ponder, pray, educate yourself. You will know what path to take!! 

      We will keep you in our prayers–they work!

      kerri–mom of jake

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      Rita and Charles
      Participant

      Hi , my husband has been on that combo for 2 1/2 months. His first CT scan showed the lung tumor shrunk by half!  Sadly, right now he is battling with a side effect that is impacting his left eye – Iritus. He may have to stop the treatment for a few weeks until it clears up…….but it worked fast and we hate to stop it! Good luck – I hope that it works for you.

       

      Rita

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      Rita and Charles
      Participant

      Hi , my husband has been on that combo for 2 1/2 months. His first CT scan showed the lung tumor shrunk by half!  Sadly, right now he is battling with a side effect that is impacting his left eye – Iritus. He may have to stop the treatment for a few weeks until it clears up…….but it worked fast and we hate to stop it! Good luck – I hope that it works for you.

       

      Rita

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      Rita and Charles
      Participant

      Hi , my husband has been on that combo for 2 1/2 months. His first CT scan showed the lung tumor shrunk by half!  Sadly, right now he is battling with a side effect that is impacting his left eye – Iritus. He may have to stop the treatment for a few weeks until it clears up…….but it worked fast and we hate to stop it! Good luck – I hope that it works for you.

       

      Rita

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