Forum Replies Created
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- May 12, 2017 at 11:23 am
I see Dr. Thomjas Gajewski, I think he is pretty awesome. I too am stage 4 with unknown primary. I had a 3 inch tumor resected in September from my back. I did 2 doses of ipi, which gave me colitis. So I could not continue. I currently see all my specialists at U of C because they all work closely together and communicate with one another every week on Friday. I am currently NED. These doctors are great and take time to answer any and all questions you have. I have never felt rushed out of their office or left confused. I highly recommend them, oh and you never have to wait long either. They are really good about keeping up on appointment times!! -
- November 13, 2016 at 6:03 pm
Yes the whole process has been very confusing. I know Dr. Luke is one of the best and I am putting my trust and faith in him right now. I have only had my first dose of ipi and have had no side effects yet. I'm going to pray it stays that way!! I believe I am in a great spot, I live in the burbs of Chicago, so I have access to some of the best Melanoma specialists in the country. And I truly believe it was caught early enough for me to have long term success with being NED!! They say positive thinking can do amazing things and that is what I am going to keep doing. Thinking positive!!
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- November 13, 2016 at 6:03 pm
Yes the whole process has been very confusing. I know Dr. Luke is one of the best and I am putting my trust and faith in him right now. I have only had my first dose of ipi and have had no side effects yet. I'm going to pray it stays that way!! I believe I am in a great spot, I live in the burbs of Chicago, so I have access to some of the best Melanoma specialists in the country. And I truly believe it was caught early enough for me to have long term success with being NED!! They say positive thinking can do amazing things and that is what I am going to keep doing. Thinking positive!!
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- November 13, 2016 at 6:03 pm
Yes the whole process has been very confusing. I know Dr. Luke is one of the best and I am putting my trust and faith in him right now. I have only had my first dose of ipi and have had no side effects yet. I'm going to pray it stays that way!! I believe I am in a great spot, I live in the burbs of Chicago, so I have access to some of the best Melanoma specialists in the country. And I truly believe it was caught early enough for me to have long term success with being NED!! They say positive thinking can do amazing things and that is what I am going to keep doing. Thinking positive!!
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- November 13, 2016 at 5:50 pm
Hi Tom, No my doctor did not do a SLND and I have only had CT Scans. He said I would get false positives because I just had the surgery to remove the tumor. This is all so confusing and everything happened so fast. I have a lot more questions for the doctor on the 22nd. Thank you for your encouragement!
Amy
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- November 13, 2016 at 5:50 pm
Hi Tom, No my doctor did not do a SLND and I have only had CT Scans. He said I would get false positives because I just had the surgery to remove the tumor. This is all so confusing and everything happened so fast. I have a lot more questions for the doctor on the 22nd. Thank you for your encouragement!
Amy
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- November 13, 2016 at 5:50 pm
Hi Tom, No my doctor did not do a SLND and I have only had CT Scans. He said I would get false positives because I just had the surgery to remove the tumor. This is all so confusing and everything happened so fast. I have a lot more questions for the doctor on the 22nd. Thank you for your encouragement!
Amy
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- November 13, 2016 at 7:20 am
Thank you for your reply. I do take my dad and my cousin (who is like more of a sister to me than a cousin) and she is has been a nurse at RUSH Hospital in Chicago for 17yrs. The doctor did say Stage 4 because it was in the fattty part underneath the skin. So I guess that makes it stage 4 because it went beyond the skin. I am just trying to stay strong and show no fear, but I'm sure everyone on here knows that is not the case!! I'm terrified. I am adopted and an only child. I have one daughter and she is 15. My biggest fear in life has always been if I die she will be all alone. I just hope I make it long enough to see her start a family of her own one day. I guess I will just have to wait and see. My next appt is Nov. 22. I meet with Dr. Luke and then go for my 2nd infusion of ipi. I already have questions written down that I want to ask. This will be my 4th meeting with him and everytime I have more questions that I overlooked or thought of after the last appointment. I guess that is to be expected. I really hope they got it all and it doesn't spread!!
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- November 13, 2016 at 7:20 am
Thank you for your reply. I do take my dad and my cousin (who is like more of a sister to me than a cousin) and she is has been a nurse at RUSH Hospital in Chicago for 17yrs. The doctor did say Stage 4 because it was in the fattty part underneath the skin. So I guess that makes it stage 4 because it went beyond the skin. I am just trying to stay strong and show no fear, but I'm sure everyone on here knows that is not the case!! I'm terrified. I am adopted and an only child. I have one daughter and she is 15. My biggest fear in life has always been if I die she will be all alone. I just hope I make it long enough to see her start a family of her own one day. I guess I will just have to wait and see. My next appt is Nov. 22. I meet with Dr. Luke and then go for my 2nd infusion of ipi. I already have questions written down that I want to ask. This will be my 4th meeting with him and everytime I have more questions that I overlooked or thought of after the last appointment. I guess that is to be expected. I really hope they got it all and it doesn't spread!!
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- November 13, 2016 at 7:20 am
Thank you for your reply. I do take my dad and my cousin (who is like more of a sister to me than a cousin) and she is has been a nurse at RUSH Hospital in Chicago for 17yrs. The doctor did say Stage 4 because it was in the fattty part underneath the skin. So I guess that makes it stage 4 because it went beyond the skin. I am just trying to stay strong and show no fear, but I'm sure everyone on here knows that is not the case!! I'm terrified. I am adopted and an only child. I have one daughter and she is 15. My biggest fear in life has always been if I die she will be all alone. I just hope I make it long enough to see her start a family of her own one day. I guess I will just have to wait and see. My next appt is Nov. 22. I meet with Dr. Luke and then go for my 2nd infusion of ipi. I already have questions written down that I want to ask. This will be my 4th meeting with him and everytime I have more questions that I overlooked or thought of after the last appointment. I guess that is to be expected. I really hope they got it all and it doesn't spread!!
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- November 13, 2016 at 7:20 am
Thank you for your reply. I do take my dad and my cousin (who is like more of a sister to me than a cousin) and she is has been a nurse at RUSH Hospital in Chicago for 17yrs. The doctor did say Stage 4 because it was in the fattty part underneath the skin. So I guess that makes it stage 4 because it went beyond the skin. I am just trying to stay strong and show no fear, but I'm sure everyone on here knows that is not the case!! I'm terrified. I am adopted and an only child. I have one daughter and she is 15. My biggest fear in life has always been if I die she will be all alone. I just hope I make it long enough to see her start a family of her own one day. I guess I will just have to wait and see. My next appt is Nov. 22. I meet with Dr. Luke and then go for my 2nd infusion of ipi. I already have questions written down that I want to ask. This will be my 4th meeting with him and everytime I have more questions that I overlooked or thought of after the last appointment. I guess that is to be expected. I really hope they got it all and it doesn't spread!!
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- November 13, 2016 at 7:20 am
Thank you for your reply. I do take my dad and my cousin (who is like more of a sister to me than a cousin) and she is has been a nurse at RUSH Hospital in Chicago for 17yrs. The doctor did say Stage 4 because it was in the fattty part underneath the skin. So I guess that makes it stage 4 because it went beyond the skin. I am just trying to stay strong and show no fear, but I'm sure everyone on here knows that is not the case!! I'm terrified. I am adopted and an only child. I have one daughter and she is 15. My biggest fear in life has always been if I die she will be all alone. I just hope I make it long enough to see her start a family of her own one day. I guess I will just have to wait and see. My next appt is Nov. 22. I meet with Dr. Luke and then go for my 2nd infusion of ipi. I already have questions written down that I want to ask. This will be my 4th meeting with him and everytime I have more questions that I overlooked or thought of after the last appointment. I guess that is to be expected. I really hope they got it all and it doesn't spread!!
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