Jennycrn1

Hi there…. back with an update…sorry for the delay. Hadn’t been back to this site since starting. Got infusions right after Halloween and another after Thanksgiving. Going back for another in 4 days. So far, no issues. None. Concerned that my lack of issues will equal a lack of effect on the lung mets. Had a scan and repeat biopsy 2 days ago per the drug study protocol. Waiting for formal CT results from MD, but the biopsy guy said the one he biopsied was either a little smaller or at least unchanged. I hope that’s good. My LDH is down again to 160. My CBC says I’m a little immune compromised, so I’m getting some kind of effect, I guess. Anyone else had anecdotal experience with side effects and effectiveness of their drugs? Should I be feeling worse for the drugs to be working better? Thanks and Merry Christmas!
Jenny

Ok. What does that mean? Your lung got punctured?

Thank You!!

Thank You!!

Thank You!!

Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

Please, I really am seeking advice, not criticism of my decision. I have been seen by two local Oncologists and also at three 'Melanoma Centers' by well known physicians since my diagnosis. I am stage 3b/3c depending on who interprets my path reports. I have persued clinical trials and am not 'eligible' by criteria. I was told most recently in Chicago that I should do NO treatment and just be vigilant with scans and exams every 3 months, and if I move to stage 4, "at least then you'll be eligible for the new drugs."  I am a nurse, I am well educated in drug adverse effects. I cannot sit back and do nothing while I move to metastatic disease when there is a drug with some change of benefit available that has many years of research re: benefits, toxicity, complications, etc.. while these new drugs need more time for better data and long term outcomes. I know there is little chance of stopping reccurance if I choose to wait. I need to do something so I don't regret waiting.

I know Interferon is controversal, but I really would like advice, and I really hope I get some because I have seen many times on this site "Everyone has to make the best decision for themself". I will tolerate Interferon so I know I was trying something. This is the best I can do now.Thank you.

Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey."  Thanks again everyone. I hope I can get as educated as you all are! 

Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey."  Thanks again everyone. I hope I can get as educated as you all are! 

Hi to everyone, thanks for all the great comments! I saw the local oncologist today and left there feeling pretty defeated. He said based on my path, I'm actually 3b because of some 'micro ulceration' Doesn't change treatment much, I know. He offered 1.) Observation 2.) Interferon, or 3.) Go somewhere and get in a clinical trial. I'm going to see Dr. Kendra at OSU in less than 2 weeks, but he also said if I wanted a second 2nd opinion, I should go to Pittsburg and see Dr. Kirkwood. I called there to get scheduled, and their coordinator is supposed to call me back after they gather and review all of my records. Hopefully soon. OSU is getting ready to start a new trial (not enrolling yet) but it's double blinded and randomized to a treatment arm or placebo. I don't want placebo. I see my surgeon tomorrow am for my post op visit after the axillary CLND. She's more of a 'glass half full' kind of girl, and I'm not sure that's what I need right now. I'll travel anywhere I can to get what is considered the best treatment. I know being considered NED is not the end of this saga for me, but just the beginning of a long, life changing experience. My 4 yr old asked me about my surgical scar under my arm and she wanted to know 'how much does it cost to get that?' (We've been talking alot about money and cost lately because she wants every toy she sees on TV) I started to give a snarky answer about money and insurance, and then stopped myself and said "It didn't cost as much as it could have, honey."  Thanks again everyone. I hope I can get as educated as you all are! 

I'm going to be seen at the James Cancer Center at Ohio State University. Can you get these medications locally, or do you have to be part of a trial somewhere? My surgeon talked to me about Interferon, but she said the Oncologist would obviously know more about treatment options.