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Hi Mark,we trust Dr Atkins a lot, he is indeed a true melanoma specialist and I will meet him tomorrow to see what is the next step. I did the interferon at stage 3a when statistically speaking I had a low risk of recurrence just because I felt like I needed to do something other than sit and wait. Never sugested that he will offer this as an option .The ippi trial for stage 3 was not open anymore. I am confident that my doctor will have options for me, I just had a nervous meltdown and was trying to see what other treatment people with similar cases did!

 I will start asking for opinions the the near future as I did in the past , starting with Hopkins continuing with MSK and some other placese for sure!

Thank you!

Thank you so much for your very knowledge responses. I really appreciate them.
 

TIL is the treatment I want to do next, but because I take steroids as dose replacement for adrenal insuficiency this will disqualify me.I will repeat the test soon, hopelully I no longer need steroids.  The TIL treatment was offered to me when I first progressed to stage 4 with just 1 tumor (the second one was removed via VATS surgery) in my body and I decided to enroll in BMS IPPi Nivo trial, with the hopes that I benefit more from it. I never imagined the monster will come back that   aggresively in the spots as bad as the bones and liver, and the treatment would leave me with long lasting side effects. I am waiting for the results of Nras and  retest the Braf hopefullty I can use these treatments as bridge treatments until I figure out what to do next. I'm being treated by a wonderful and very knowledgeble Dr Atkins at Lombardi in Washington DC.  In regards with the humerus met, I consulted with a radoilogist oncologist to treat it, and I will probably see an orthopedist to explore the surgery option. I'm afraid if I treat this with surgery or radioation I will delay the sistemic treatment, so until I have a plan in place we will leave this as is. I'm thinking to do the tour to Sloan and some other places to gather as many info as posible before making a decision. My doctor feels that something happen in the tumor and became so aggresive , it could have something to do with the steroids I'm taking for adrenal insuficiency that made the treatment to stop working. They went back and re read the scans from april and it turnes out, the liver met was visible but it was not noted and this makes me so furious because I waisted 6 precious weeks thinking that the treatment was working. I will have to do something soon because the shoulder started to bother me more and more , especially at night. I need a miracle to happen , and I pray to God to enlighten us to make the best treatment decision as I need to be around for my young kids!!

I will explore the Merck anti PD1 , but I'm not sure if this will work if Nivo failed since they have the same mechanism of action.

I'm sure there are still options . This weekend is ASCO annual meeting hopefully some new ideas will come out of there.

Many thanks to you for all of your answes , I will keep you posted.

 

Dana

 

Thank you so much for your very knowledge responses. I really appreciate them.
 

TIL is the treatment I want to do next, but because I take steroids as dose replacement for adrenal insuficiency this will disqualify me.I will repeat the test soon, hopelully I no longer need steroids.  The TIL treatment was offered to me when I first progressed to stage 4 with just 1 tumor (the second one was removed via VATS surgery) in my body and I decided to enroll in BMS IPPi Nivo trial, with the hopes that I benefit more from it. I never imagined the monster will come back that   aggresively in the spots as bad as the bones and liver, and the treatment would leave me with long lasting side effects. I am waiting for the results of Nras and  retest the Braf hopefullty I can use these treatments as bridge treatments until I figure out what to do next. I'm being treated by a wonderful and very knowledgeble Dr Atkins at Lombardi in Washington DC.  In regards with the humerus met, I consulted with a radoilogist oncologist to treat it, and I will probably see an orthopedist to explore the surgery option. I'm afraid if I treat this with surgery or radioation I will delay the sistemic treatment, so until I have a plan in place we will leave this as is. I'm thinking to do the tour to Sloan and some other places to gather as many info as posible before making a decision. My doctor feels that something happen in the tumor and became so aggresive , it could have something to do with the steroids I'm taking for adrenal insuficiency that made the treatment to stop working. They went back and re read the scans from april and it turnes out, the liver met was visible but it was not noted and this makes me so furious because I waisted 6 precious weeks thinking that the treatment was working. I will have to do something soon because the shoulder started to bother me more and more , especially at night. I need a miracle to happen , and I pray to God to enlighten us to make the best treatment decision as I need to be around for my young kids!!

I will explore the Merck anti PD1 , but I'm not sure if this will work if Nivo failed since they have the same mechanism of action.

I'm sure there are still options . This weekend is ASCO annual meeting hopefully some new ideas will come out of there.

Many thanks to you for all of your answes , I will keep you posted.

 

Dana

 

Thank you so much for your very knowledge responses. I really appreciate them.
 

TIL is the treatment I want to do next, but because I take steroids as dose replacement for adrenal insuficiency this will disqualify me.I will repeat the test soon, hopelully I no longer need steroids.  The TIL treatment was offered to me when I first progressed to stage 4 with just 1 tumor (the second one was removed via VATS surgery) in my body and I decided to enroll in BMS IPPi Nivo trial, with the hopes that I benefit more from it. I never imagined the monster will come back that   aggresively in the spots as bad as the bones and liver, and the treatment would leave me with long lasting side effects. I am waiting for the results of Nras and  retest the Braf hopefullty I can use these treatments as bridge treatments until I figure out what to do next. I'm being treated by a wonderful and very knowledgeble Dr Atkins at Lombardi in Washington DC.  In regards with the humerus met, I consulted with a radoilogist oncologist to treat it, and I will probably see an orthopedist to explore the surgery option. I'm afraid if I treat this with surgery or radioation I will delay the sistemic treatment, so until I have a plan in place we will leave this as is. I'm thinking to do the tour to Sloan and some other places to gather as many info as posible before making a decision. My doctor feels that something happen in the tumor and became so aggresive , it could have something to do with the steroids I'm taking for adrenal insuficiency that made the treatment to stop working. They went back and re read the scans from april and it turnes out, the liver met was visible but it was not noted and this makes me so furious because I waisted 6 precious weeks thinking that the treatment was working. I will have to do something soon because the shoulder started to bother me more and more , especially at night. I need a miracle to happen , and I pray to God to enlighten us to make the best treatment decision as I need to be around for my young kids!!

I will explore the Merck anti PD1 , but I'm not sure if this will work if Nivo failed since they have the same mechanism of action.

I'm sure there are still options . This weekend is ASCO annual meeting hopefully some new ideas will come out of there.

Many thanks to you for all of your answes , I will keep you posted.

 

Dana

 

Hi Jackie,

 

I'm exploring this trial as the next treatment, I hope I will qualify for it because I have adrenal insuficiency, and I need further testing. I'm waiting on the result of the NRAS and also I wanted to retest the BRAF hopefully I will benefit from one of these therapies.

God is Great and He has the power to heal everything!

 

Thanks

Dana

Hi Jackie,

 

I'm exploring this trial as the next treatment, I hope I will qualify for it because I have adrenal insuficiency, and I need further testing. I'm waiting on the result of the NRAS and also I wanted to retest the BRAF hopefully I will benefit from one of these therapies.

God is Great and He has the power to heal everything!

 

Thanks

Dana

Hi Jackie,

 

I'm exploring this trial as the next treatment, I hope I will qualify for it because I have adrenal insuficiency, and I need further testing. I'm waiting on the result of the NRAS and also I wanted to retest the BRAF hopefully I will benefit from one of these therapies.

God is Great and He has the power to heal everything!

 

Thanks

Dana

Thank you everybody for your responses!

I appreciate every single word .

Joe, can I ask where you are treated? Your story is so encuraging, I'm gathering all the strenght to keep fighting. I'm just numbed by the news I received, how fast things can change , from almost NED to this in a matter of weeks. Tonight I will have a brain MRI, tuesday the PET CT , an soon they will unblind me to find out what meds I received.hopeluly soon I will have a plan. Last weeks bloodwork was normal, for what it matters !

Dana

 

Thank you everybody for your responses!

I appreciate every single word .

Joe, can I ask where you are treated? Your story is so encuraging, I'm gathering all the strenght to keep fighting. I'm just numbed by the news I received, how fast things can change , from almost NED to this in a matter of weeks. Tonight I will have a brain MRI, tuesday the PET CT , an soon they will unblind me to find out what meds I received.hopeluly soon I will have a plan. Last weeks bloodwork was normal, for what it matters !

Dana

 

Thank you everybody for your responses!

I appreciate every single word .

Joe, can I ask where you are treated? Your story is so encuraging, I'm gathering all the strenght to keep fighting. I'm just numbed by the news I received, how fast things can change , from almost NED to this in a matter of weeks. Tonight I will have a brain MRI, tuesday the PET CT , an soon they will unblind me to find out what meds I received.hopeluly soon I will have a plan. Last weeks bloodwork was normal, for what it matters !

Dana