› Forums › General Melanoma Community › I need some questions to take to my doctor
- This topic has 12 replies, 3 voices, and was last updated 11 years, 11 months ago by
lhaley.
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- May 18, 2012 at 7:53 pm
I am clueless about my Melanoma, all I know is that I am stage 1V , was misdiagnosed in 2006 as insitu, had part of my finger removed also SNB done at that time too and was clear. 2010 devolped a lump on the same arm and was told it was Metastic Melanoma since then have had many surguries and done interferon 2-11, could just do the month was too hard on me. Isolated limb perfusion was suggested and was seen at University of Illinois and was told that since I was cancer free at that time he would not do it, a month later I devolped another lump and again another surgery.
I am clueless about my Melanoma, all I know is that I am stage 1V , was misdiagnosed in 2006 as insitu, had part of my finger removed also SNB done at that time too and was clear. 2010 devolped a lump on the same arm and was told it was Metastic Melanoma since then have had many surguries and done interferon 2-11, could just do the month was too hard on me. Isolated limb perfusion was suggested and was seen at University of Illinois and was told that since I was cancer free at that time he would not do it, a month later I devolped another lump and again another surgery. Fast forward now it is in my lungs, and lymph node (which I thought all was removed in 12-10) I have several lumps on my arm too, had the ipi this year, just 3 treatments since I had a bad reaction, no 4 th is recommended. Now I need to have another scan on 6-4-12 and if someone here can help me with what questions I need to ask of the doctor. I do not know how deep my original cancer was, I thought I had the pathology report but don't have that either. I really thought I was up on this cancer but since coming to this board I know now that I am clueless. Would appreciate any input…thanks..
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- May 18, 2012 at 11:02 pm
It really doesn't matter now what the depth was of the primary. Once it metasticizes you really won't need the path unless they want to know the type of melanoma. If you transfer to another cancer center the larger centers will want to read the pathology again.
Have you had one of the tumors looked at to see if you have one of the mutations? Also ask if your cancer center has any trials that are available. Would they help you find another trial. It sounds like you are not on any treatments at this time due to the Ipi side effects. If I was you I would ask what you should be doing now.
When you go to your appointment make sure that your questions are written down.
Linda
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- May 19, 2012 at 12:23 am
Linda, I am going to a bigger cancer center, they are hoping that the ipi still worked since my last treatment was 2-20-12. If it hasn't then he was talking about PD 1 trial. I am Braf=negative so I don't have too many options. I am for sure going towrite everything down since I won't have my sisters with me this time, they did alot of questioning, and a person gets nervous just waiting for the results of the scan.
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- May 19, 2012 at 1:20 am
My blood pressure is usually so high when I'm waiting for my results that I usually can't even hear! My ears just feel as if there is just white noise 🙁 During the exam he has commented that my heart is beating so loudly and quickly that it hurts his ears!!
My Dr has gotten to know me enough that he does a visual for me. He always shows me the scans – even if ok. Because of a trial I'm in for the durabond used during the crainectomy, this time the nuerosurgeon is the one who is seeing me first. I have no idea of how he is going to tell me how the scan is. My oncologist is used to how my heart is going crazy.
It really does sound like you have more information than you realize. Have you also thought to ask if they know of any just MEK trials?
Linda
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- May 19, 2012 at 1:20 am
My blood pressure is usually so high when I'm waiting for my results that I usually can't even hear! My ears just feel as if there is just white noise 🙁 During the exam he has commented that my heart is beating so loudly and quickly that it hurts his ears!!
My Dr has gotten to know me enough that he does a visual for me. He always shows me the scans – even if ok. Because of a trial I'm in for the durabond used during the crainectomy, this time the nuerosurgeon is the one who is seeing me first. I have no idea of how he is going to tell me how the scan is. My oncologist is used to how my heart is going crazy.
It really does sound like you have more information than you realize. Have you also thought to ask if they know of any just MEK trials?
Linda
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- May 19, 2012 at 1:20 am
My blood pressure is usually so high when I'm waiting for my results that I usually can't even hear! My ears just feel as if there is just white noise 🙁 During the exam he has commented that my heart is beating so loudly and quickly that it hurts his ears!!
My Dr has gotten to know me enough that he does a visual for me. He always shows me the scans – even if ok. Because of a trial I'm in for the durabond used during the crainectomy, this time the nuerosurgeon is the one who is seeing me first. I have no idea of how he is going to tell me how the scan is. My oncologist is used to how my heart is going crazy.
It really does sound like you have more information than you realize. Have you also thought to ask if they know of any just MEK trials?
Linda
-
- May 19, 2012 at 12:23 am
Linda, I am going to a bigger cancer center, they are hoping that the ipi still worked since my last treatment was 2-20-12. If it hasn't then he was talking about PD 1 trial. I am Braf=negative so I don't have too many options. I am for sure going towrite everything down since I won't have my sisters with me this time, they did alot of questioning, and a person gets nervous just waiting for the results of the scan.
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- May 19, 2012 at 12:23 am
Linda, I am going to a bigger cancer center, they are hoping that the ipi still worked since my last treatment was 2-20-12. If it hasn't then he was talking about PD 1 trial. I am Braf=negative so I don't have too many options. I am for sure going towrite everything down since I won't have my sisters with me this time, they did alot of questioning, and a person gets nervous just waiting for the results of the scan.
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- May 18, 2012 at 11:02 pm
It really doesn't matter now what the depth was of the primary. Once it metasticizes you really won't need the path unless they want to know the type of melanoma. If you transfer to another cancer center the larger centers will want to read the pathology again.
Have you had one of the tumors looked at to see if you have one of the mutations? Also ask if your cancer center has any trials that are available. Would they help you find another trial. It sounds like you are not on any treatments at this time due to the Ipi side effects. If I was you I would ask what you should be doing now.
When you go to your appointment make sure that your questions are written down.
Linda
-
- May 18, 2012 at 11:02 pm
It really doesn't matter now what the depth was of the primary. Once it metasticizes you really won't need the path unless they want to know the type of melanoma. If you transfer to another cancer center the larger centers will want to read the pathology again.
Have you had one of the tumors looked at to see if you have one of the mutations? Also ask if your cancer center has any trials that are available. Would they help you find another trial. It sounds like you are not on any treatments at this time due to the Ipi side effects. If I was you I would ask what you should be doing now.
When you go to your appointment make sure that your questions are written down.
Linda
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