@trishahimm
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- February 22, 2012 at 4:18 am
My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis. His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.
He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment. After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.
He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!
I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.
Trisha
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- February 22, 2012 at 4:18 am
My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis. His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.
He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment. After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.
He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!
I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.
Trisha
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- February 22, 2012 at 4:18 am
My dad recently finished his 12 weeks on IPI and his PET scan showed significant decreases in the number and size of most of his mets. He had numerous on his liver, lungs, spleen and one on his spine along with many on the skin in several places on his body and in the groin area where his lymph nodes were removed from the original metastasis. His original tumor was on the ball of his foot. He had immediate changes to the visible skin lesions after the first infusion and they all completely disappeared long before the treatment was over, so we were hopeful that his PET scan would show the results it did after seeing the response by the visible lesions. A couple of mets increased in size, one on the spleen and the one in his spine, but they didn't start IPI until nearly 3 weeks after the PET scan that they compared to, so there is a chance that they are actually responding as well. We won't know for sure until the next scan in May. Whatever the case, the Drs are amazed that he is with us and doing so well today, considering how heavy the cancer load was at the beginning of the IPI treatment. They had never treated with IPI before and were shocked at his response.
He had very little side effects after the first 2 infusions. Mostly just fatigue. Then just before his 3rd treatment, he wasn't feeling well, and it turns out his liver counts went out of whack and they nearly stopped the treatment. After discussion, they decided that the cancer would take him if they stopped so they would take the risk with his liver to give him the treatment. He took very good care of himself and was able to get his liver counts to drop, not back to normal, but enough to feel confident to finish the treatments. His liver is back within normal ranges now. He has developed a rash after the end of treatment that he is still dealing with, but a small price to pay he feels.
He is by no means NED, but IPI has certainly prolonged his time with us and he is able to function very well right now. He is doing his regular routine and taking short trips on the weekends with my mom. He just celebrated his 60th Bday and he was just ecstatic since he didn't expect to see it! Hopefully he stays stable for much longer!
I hope your experience is as good or better than my dad's! Keep a positive attitude. My dad says that is the most important thing he has done throughout his experience so far. Good luck to you.
Trisha
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- October 27, 2011 at 2:28 am
Thanks Alison,
Thank you for the info about the treatments. I will write them down for my dad to discuss with the dr if he doesn't mention them.
He did have a scan before they did any surgery at all and was cleared of any cancer other than the foot according to the PET scan. But then they found it in 4 of the 5 sentinel nodes they removed in the groin and went back a couple weeks later and took all the nodes and tissue from the groin area, and got as much as they could but couldn't get it all. He was stage IIIC. They did radiation on the groin as well as the foot.
It was just the long waiting to start any treatment as the delayed healing was holding up the radiation and then the radiation held up starting interferon, and no additional scans. I am not a Dr., but I was concerned that the initial scans were "clear" yet his groin was filled with cancer through the nodes, tissues, and into the vessels and surrounding areas that they could not cut out. So I felt like they should have had a scan at 3 months which I thought was pretty standard. Everything has been reactionary and that is what has been upsetting to me.
Anyway, I just spoke on the phone with him and he is exhausted and so am I, so I am going to sign off and try to calm my emotions before tomorrow.
Thank you,
Trisha
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- October 27, 2011 at 2:28 am
Thanks Alison,
Thank you for the info about the treatments. I will write them down for my dad to discuss with the dr if he doesn't mention them.
He did have a scan before they did any surgery at all and was cleared of any cancer other than the foot according to the PET scan. But then they found it in 4 of the 5 sentinel nodes they removed in the groin and went back a couple weeks later and took all the nodes and tissue from the groin area, and got as much as they could but couldn't get it all. He was stage IIIC. They did radiation on the groin as well as the foot.
It was just the long waiting to start any treatment as the delayed healing was holding up the radiation and then the radiation held up starting interferon, and no additional scans. I am not a Dr., but I was concerned that the initial scans were "clear" yet his groin was filled with cancer through the nodes, tissues, and into the vessels and surrounding areas that they could not cut out. So I felt like they should have had a scan at 3 months which I thought was pretty standard. Everything has been reactionary and that is what has been upsetting to me.
Anyway, I just spoke on the phone with him and he is exhausted and so am I, so I am going to sign off and try to calm my emotions before tomorrow.
Thank you,
Trisha
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- October 27, 2011 at 2:28 am
Thanks Alison,
Thank you for the info about the treatments. I will write them down for my dad to discuss with the dr if he doesn't mention them.
He did have a scan before they did any surgery at all and was cleared of any cancer other than the foot according to the PET scan. But then they found it in 4 of the 5 sentinel nodes they removed in the groin and went back a couple weeks later and took all the nodes and tissue from the groin area, and got as much as they could but couldn't get it all. He was stage IIIC. They did radiation on the groin as well as the foot.
It was just the long waiting to start any treatment as the delayed healing was holding up the radiation and then the radiation held up starting interferon, and no additional scans. I am not a Dr., but I was concerned that the initial scans were "clear" yet his groin was filled with cancer through the nodes, tissues, and into the vessels and surrounding areas that they could not cut out. So I felt like they should have had a scan at 3 months which I thought was pretty standard. Everything has been reactionary and that is what has been upsetting to me.
Anyway, I just spoke on the phone with him and he is exhausted and so am I, so I am going to sign off and try to calm my emotions before tomorrow.
Thank you,
Trisha
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- September 29, 2011 at 10:59 pm
As far as I have heard chemo doesn't touch melanoma. The oncologist said they don't even bother giving it anymore because it doesn't help.
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- September 29, 2011 at 10:59 pm
As far as I have heard chemo doesn't touch melanoma. The oncologist said they don't even bother giving it anymore because it doesn't help.
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- September 29, 2011 at 10:56 pm
Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.
There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.
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- September 29, 2011 at 10:56 pm
Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.
There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.
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- September 29, 2011 at 10:56 pm
Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.
There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.
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- September 29, 2011 at 10:56 pm
Sorry it should have said 11mm, not cm. His original tumor was 11mm deep. My dad spoke with the oncologist yesterday. After these recent tumors, they are now going to push up the interferon starting in 2.5 weeks instead of 5.5 weeks. My dad was asking how long does the Dr think he might have ballpark. The Dr. said that he wished he had a crystal ball, but "it doesn't look good". He hasn't had a scan in 4 months. Nothing showed in his initial scans other than the original foot tumor, but after they checked the sentinel lymph nodes as a precaution- 4 out of the 5 nodes had cancer and they did a radical lymphadenctomy. The surgeon said it was into the blood vessels there and that she got as much as she could.
There haven't been any tests showing it in organs or other areas of the skin other than these recent new ones near the original tumor site. If he is officially just stage 3 right now, why are they already so hopeless? I see people on this board who are stage 4 that have been living with melanoma for a long time. Is his case different from other peoples' somehow? I just don't understand why suddenly after these recent tumors they have almost no hope for my dad's cancer. I am confused.
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- July 10, 2011 at 6:10 pm
It doesn't say Acral, it just says Malignant Melanoma. Other stuff it says:
Ulcerated
Clark's level IV at least
Maximal depth 3.05 mm, at least
Transected at base and laterally
perineural involvement present
Immunohistochemical reactivity for S100 and HMB45 and lack of reactivity for CK5/6 and Pan-Cytokeratin supports malignant melanoma
Tumor infiltrating lymphocytes – absent
Mitotic rate low
regression absent
vascular or lymphatic invasion absent
This was from the foot biopsy about 6 weeks ago. He hasn't received anything else with details like this, all just word of mouth. I am not sure I understand about the PET scan and how it would have false negatives. If he has at least 8 black LN but it didn't get picked up, does that mean they were less than 5 or 6 millimeters? The Dr suggested clicnical trials too. I think we will discuss it with the dr this week.
I am heading over to see him now at the hsopital. He had a bad night with fevers, so I will check in again when I get home. Thank you for your response , or that we should have had a CT scan?? I
Trisha
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- July 10, 2011 at 6:10 pm
It doesn't say Acral, it just says Malignant Melanoma. Other stuff it says:
Ulcerated
Clark's level IV at least
Maximal depth 3.05 mm, at least
Transected at base and laterally
perineural involvement present
Immunohistochemical reactivity for S100 and HMB45 and lack of reactivity for CK5/6 and Pan-Cytokeratin supports malignant melanoma
Tumor infiltrating lymphocytes – absent
Mitotic rate low
regression absent
vascular or lymphatic invasion absent
This was from the foot biopsy about 6 weeks ago. He hasn't received anything else with details like this, all just word of mouth. I am not sure I understand about the PET scan and how it would have false negatives. If he has at least 8 black LN but it didn't get picked up, does that mean they were less than 5 or 6 millimeters? The Dr suggested clicnical trials too. I think we will discuss it with the dr this week.
I am heading over to see him now at the hsopital. He had a bad night with fevers, so I will check in again when I get home. Thank you for your response , or that we should have had a CT scan?? I
Trisha
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- July 10, 2011 at 5:58 pm
Hi Mary,
Thank you, we are in So San Francisco at Kaiser. I am not sure if the doctor he is going to meet this week is a melanoma specialist, I will ask. I guess the surgeon discussed his case with a tumor board, so the treatment plan has been determined by a committee.
Trisha
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