@jenc
Forum Replies Created
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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- December 1, 2011 at 5:46 am
Thanks for your replies. I have calmed down, but given my last two years I don't think my concern was unreasonable. I do realize that I am lucky to have found it early. My husband went in to have his mole checked on the top of his head and was sent home being told don't worry about it. period. No suggestion of what to look for or recommendation to see a dermatologist. I had my mole biopsied 7 years ago and it grew back around the scar. I go to the dermatologist annually and for 3 years I have pointed out the regrown mole and asked for a biopsy and was told it did not appear to be anything to worry about – my last visit was in April. Six months later I decided I wanted it gone and asked for a biopsy again. I was told that the doctor determined that it was not suspicious and it would be considered cosmetic surgery and billed as such to my insurance. Even as the doctor was cutting it off she assured me that it had not grown in size. I know this cancer is tricky, but if caught early it is treatable,however why is it so difficult to get a biopsy done? I do hear that it is over diagnosed, but this hasn't been the case in my family. Janner, could you clarify – you said that in situ lacks the ability to spread. If left untreated, could it spread? Is this the beginning of malignant melanoma or a different type completely? My husband had nodular melanoma that started at the mole on his scalp and spread to the lymph nodes and eventually was everywhere. Everyone told us if caught early he would have been fine. Had he not gone through this, I would not have insisted on a biopsy.
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- August 3, 2011 at 5:41 pm
Jill,
You are in my prayers. I, too, lost my husband 4 weeks ago. He was my best friend – my life! I followed your posts since he had tumors similar to Eric's, but they were on his face and neck. We always seemed a step behind you. I found your journaling and outreach an inspiration, and although we were private in our battle, I plan to work hard to raise awareness in his memory. I also wanted to say that we prayed for strength. We don't know God's will, but He does answer prayers… sometimes with a yes, sometimes a no, and sometimes a "later". While our prayers to remain together on this earth were answered with a no, our prayers for strength for both of us and our children was answered with a YES! We are comforted with knowing that we will be together with Daddy again, and that it is our jobs to continue and enjoy life, while keeping the love he gave to us in our hearts and our daily lives. Our Loves will never be forgotten and our lives are better for having known them. Eric is indeed at Peace, and I pray that you will feel that peace as well.
JenC
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- August 3, 2011 at 5:41 pm
Jill,
You are in my prayers. I, too, lost my husband 4 weeks ago. He was my best friend – my life! I followed your posts since he had tumors similar to Eric's, but they were on his face and neck. We always seemed a step behind you. I found your journaling and outreach an inspiration, and although we were private in our battle, I plan to work hard to raise awareness in his memory. I also wanted to say that we prayed for strength. We don't know God's will, but He does answer prayers… sometimes with a yes, sometimes a no, and sometimes a "later". While our prayers to remain together on this earth were answered with a no, our prayers for strength for both of us and our children was answered with a YES! We are comforted with knowing that we will be together with Daddy again, and that it is our jobs to continue and enjoy life, while keeping the love he gave to us in our hearts and our daily lives. Our Loves will never be forgotten and our lives are better for having known them. Eric is indeed at Peace, and I pray that you will feel that peace as well.
JenC
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- February 8, 2011 at 7:51 am
A week after my husband started ippi he got a strange blister-like raised rash in an area near his tumors. I freaked out since some of the (very rare) autoimmune side effects of the treatment cause one's body to reject the skin and it peels off in sheets. We had it checked out and all we could figure out is that he may have had a heat pad on the site and since he has no feeling there from surgeries, he may have burned his skin. It got infected and he got fevers & chills. It has since healed up mostly, but it was strange.
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- February 8, 2011 at 7:51 am
A week after my husband started ippi he got a strange blister-like raised rash in an area near his tumors. I freaked out since some of the (very rare) autoimmune side effects of the treatment cause one's body to reject the skin and it peels off in sheets. We had it checked out and all we could figure out is that he may have had a heat pad on the site and since he has no feeling there from surgeries, he may have burned his skin. It got infected and he got fevers & chills. It has since healed up mostly, but it was strange.
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- January 12, 2011 at 9:08 pm
My husband just started ipi last week and just yesterday got a blister like rash on his shoulder. I recalled this posting and reviewed your replies, and am somewhat relieved. However, upon reviewing the clinical trial paperwork I saw a note about toxic epidermal necrolysis and started worrying. I am waiting to hear back from the oncologist but in the meantime I am somewhat freaking out. I hope that they can evaluate the rash asap – but I was wondering if anyone here had input. His rash is not so much a welt, but it looks like a blister with some fluid in it and there is peeling skin around this. It is near some subq tumors but not immediately on them. Thanks in advance.
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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- December 9, 2011 at 5:45 am
Janner, thank you so much for your input! Turns out you were right on. I had my initial biopsy 7 years ago and it was read by a general pathologist. When they did this biopsy they requested the tissue block from the old biopsy and a dermopathologist re-tested it using a newer technique. The new path report said that it was melanoma in situ associated with an intradermal nevus and that it was present at the margins of the sample. It also said that it was likely the same thing 7 years ago. Since then it spread to a total diameter of 13mm around the scar of the first biopsy (which originally removed the entire mole). Last Friday I had the WLE. I have been a wreck all week, epecially since every one says, "if caught early…." and I now knew that it was there for 7 years. The new WLE pathology shows no abnormal tissue. I feel so much better but I am still so very nervous for my children. God bless everyone here on this board, whether you are here for yourself or a loved one!
JenC
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