› Forums › General Melanoma Community › Greatly appreciate any Info
- This topic has 24 replies, 5 voices, and was last updated 12 years, 6 months ago by
POW.
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- May 28, 2013 at 5:55 am
Quick rundown… 2004 Mole left ankle biopsy Melanoma 1.05 mm, Clark’s level IV, neg ulceration , miotic rate 2/mm2. I had a wide Excision and negative sentinel lymph node biopsy.
Jan 2011 new nodular lesion left shin area, melanoma
March 2011 wide excision and skin flap
Sept 2011 2 nodular looking lesions left shin area
Dec 2011 ILP MDAnderson with Melphalan and Dactamycian (I know I spelled that wrong sorry) not very successful .
May 2012 2 more lesions ..revealed dermal s100-positive spindle cell proliferation similar to the one seen in previous biopsy.
Dec 2012 Clinical Trial ILP with Temozolomide .. Unsuccessful, removed from trial and proceeded with 5 wide excisions and skin graft Feb 2013
March 2013 1month later finished skin graft on shin and had reexcision on 2 areas where the margins were not clear and skin graft on ankle where I found Sub Q?
May 2013 found new suspicious lesion left calf .. Referred to medical oncology at MDA
They had been talking about treatment with Zelboraf since I am BRAF positive, but I thought I understood it to be used as a last resort type of thing, and that people become resist to it after a short period of time. So far all my scans up until now are clear. So would another treatment be better before Z ?
I sure would appreciate any advice you have. It’s late and I’m tired and worried so I hope I haven’t confused anyone too much. Thanks ahead of time.Dee
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- May 28, 2013 at 11:42 am
Dee, I don't understand what you are describing. You said "So far all my scans up until now are clear." Does that mean that you have had CT and MRI scans and the only mets you have are dermal? No lymph node involvement? No mets in your internal organs or your brain? If that is the case, why would your doctors recommend Zelboraf? Skin lesions won't kill you. What is the problem?
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- May 28, 2013 at 4:37 pm
As far as I know there is no lymph node involvement, my last scans in Feb were clear, no organ involvement or brain. I’am stage 3B due to Intransist disease. I’m not sure why the surgeon just doesn’t want to remove the new lesion, I have an appt with the oncologist today to talk. I’m sorry if I’m so confusing. Thank you for your help. -
- May 28, 2013 at 4:37 pm
As far as I know there is no lymph node involvement, my last scans in Feb were clear, no organ involvement or brain. I’am stage 3B due to Intransist disease. I’m not sure why the surgeon just doesn’t want to remove the new lesion, I have an appt with the oncologist today to talk. I’m sorry if I’m so confusing. Thank you for your help. -
- May 28, 2013 at 4:37 pm
As far as I know there is no lymph node involvement, my last scans in Feb were clear, no organ involvement or brain. I’am stage 3B due to Intransist disease. I’m not sure why the surgeon just doesn’t want to remove the new lesion, I have an appt with the oncologist today to talk. I’m sorry if I’m so confusing. Thank you for your help.
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- May 28, 2013 at 11:42 am
Dee, I don't understand what you are describing. You said "So far all my scans up until now are clear." Does that mean that you have had CT and MRI scans and the only mets you have are dermal? No lymph node involvement? No mets in your internal organs or your brain? If that is the case, why would your doctors recommend Zelboraf? Skin lesions won't kill you. What is the problem?
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- May 28, 2013 at 11:42 am
Dee, I don't understand what you are describing. You said "So far all my scans up until now are clear." Does that mean that you have had CT and MRI scans and the only mets you have are dermal? No lymph node involvement? No mets in your internal organs or your brain? If that is the case, why would your doctors recommend Zelboraf? Skin lesions won't kill you. What is the problem?
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- May 28, 2013 at 12:15 pm
Are you stage 3 or 4? I don’t think you qualify for systematic treatment unless it’s progressed past the skin. If it has progressed to nodes or organs, you need to discuss Yervoy as an option. Zelboraf has a bad rap…it is typically deemed as a “last ditch” drug to extend life a bit…for some that is the case. For some it brings the tumor load down enough for them to feel better and tolerate other systematic treatments. For some (like my husband), it is a miracle drug…he’s been on it 19 months and has been NED for over a year (stage 4 for 2 1/2 years with mets everywhere in his body and brain). Before you start discussion late stage treatments, you need to figure out if you really qualify (or even need) then…if the melanoma is contained to the skin, removal is the best treatment and there’s no need to pull out “the big guns.”. Save those for if/when you need them. -
- May 28, 2013 at 12:15 pm
Are you stage 3 or 4? I don’t think you qualify for systematic treatment unless it’s progressed past the skin. If it has progressed to nodes or organs, you need to discuss Yervoy as an option. Zelboraf has a bad rap…it is typically deemed as a “last ditch” drug to extend life a bit…for some that is the case. For some it brings the tumor load down enough for them to feel better and tolerate other systematic treatments. For some (like my husband), it is a miracle drug…he’s been on it 19 months and has been NED for over a year (stage 4 for 2 1/2 years with mets everywhere in his body and brain). Before you start discussion late stage treatments, you need to figure out if you really qualify (or even need) then…if the melanoma is contained to the skin, removal is the best treatment and there’s no need to pull out “the big guns.”. Save those for if/when you need them. -
- May 28, 2013 at 12:15 pm
Are you stage 3 or 4? I don’t think you qualify for systematic treatment unless it’s progressed past the skin. If it has progressed to nodes or organs, you need to discuss Yervoy as an option. Zelboraf has a bad rap…it is typically deemed as a “last ditch” drug to extend life a bit…for some that is the case. For some it brings the tumor load down enough for them to feel better and tolerate other systematic treatments. For some (like my husband), it is a miracle drug…he’s been on it 19 months and has been NED for over a year (stage 4 for 2 1/2 years with mets everywhere in his body and brain). Before you start discussion late stage treatments, you need to figure out if you really qualify (or even need) then…if the melanoma is contained to the skin, removal is the best treatment and there’s no need to pull out “the big guns.”. Save those for if/when you need them. -
- May 28, 2013 at 2:07 pm
My dad was put on implumimab and it just about killed him. He is now on the Zelboraf and it has been working great. We did find a spot in his left femur last week so they are going to up the zelboraf. I have only good things to say about Zelboraf.
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- May 28, 2013 at 4:59 pm
to clear things up, with my melanoma on my skin, scalp, and IN my ear, I have not had lymph node involvement…yet. I am still stage III, and unresectable due to many factors. I am eligible for almost every treatment as Stage IV'ers. the best thing that every happened to me was that Curetech's PD1 trial was not eligible for stage IIIC, because that trial failed. I am stopping Zel in a few days and "hoping" to accrue enough measurable disease (based on last month's intermitant dosing it shouldn't be a problem) to enter Merck's PD1 clinical trial.
again, IIIC is eligible for every PD1 trial that I've seen out there now, Yervoy, and BRAF drugs.
karen
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- May 28, 2013 at 4:59 pm
to clear things up, with my melanoma on my skin, scalp, and IN my ear, I have not had lymph node involvement…yet. I am still stage III, and unresectable due to many factors. I am eligible for almost every treatment as Stage IV'ers. the best thing that every happened to me was that Curetech's PD1 trial was not eligible for stage IIIC, because that trial failed. I am stopping Zel in a few days and "hoping" to accrue enough measurable disease (based on last month's intermitant dosing it shouldn't be a problem) to enter Merck's PD1 clinical trial.
again, IIIC is eligible for every PD1 trial that I've seen out there now, Yervoy, and BRAF drugs.
karen
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- May 28, 2013 at 4:59 pm
to clear things up, with my melanoma on my skin, scalp, and IN my ear, I have not had lymph node involvement…yet. I am still stage III, and unresectable due to many factors. I am eligible for almost every treatment as Stage IV'ers. the best thing that every happened to me was that Curetech's PD1 trial was not eligible for stage IIIC, because that trial failed. I am stopping Zel in a few days and "hoping" to accrue enough measurable disease (based on last month's intermitant dosing it shouldn't be a problem) to enter Merck's PD1 clinical trial.
again, IIIC is eligible for every PD1 trial that I've seen out there now, Yervoy, and BRAF drugs.
karen
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Tagged: cutaneous melanoma
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