› Forums › General Melanoma Community › Treatment Options -Stage 3c
- This topic has 18 replies, 8 voices, and was last updated 12 years, 7 months ago by
Scott_MK.
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- September 23, 2011 at 2:01 am
Hello all,
Hello all,
This past Tuesday I met with my surgeon regarding the surgery from a couple of weeks ago. Based on the path results, I am Stage 3c. 3 positive nodes, 2 of which were matted. Plus, the Cloquets node came back positive (after a negative result when frozen and tested while I was under in the operating room…the negative result caused him to skip taking out the deep nodes). The Cloquets was positive for a 1mm spot in the middle of the node. Of course, this worries me because the melanoma could have gotten to the deep nodes which remain in my body. The doctor does not believe we need to go back in for the deep nodes because he believes it is unlikely the melanoma got past the Cloquets node since it is only 1mm.
I am being referred to the oncologist to begin treatment once I heal from surgery. My concern is that the doctor told me that interferon is my only option because I am stage 3. He told me that Yervoy and other options were for stage 4 patients. Of course, I haven't heard this from the onc yet but I want to be prepared when I walk in the door.
Any feedback that may be helpful for my consult with the onc?
Many thanks,
Jacki
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- September 23, 2011 at 2:39 am
Hi Jacki,
From earlier posts I understand that Yervoy is an option for stage 3 patients with unresectable melanoma, or metastisized and not responsive to other treatments, along with stage 4.
I was on Ipi in 08 in a clinical trial and I was (still am) stage 3C with resected melanoma.
You are certainly welcome to email my doctor, Jeffrey Weber, one of the foremost immunologists (and Yervoy gurus) in the U.S. He responds quickly to emails, usually during the same work day. His email is: [email protected]
God Bless and much success,
Jim M.
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- September 23, 2011 at 2:39 am
Hi Jacki,
From earlier posts I understand that Yervoy is an option for stage 3 patients with unresectable melanoma, or metastisized and not responsive to other treatments, along with stage 4.
I was on Ipi in 08 in a clinical trial and I was (still am) stage 3C with resected melanoma.
You are certainly welcome to email my doctor, Jeffrey Weber, one of the foremost immunologists (and Yervoy gurus) in the U.S. He responds quickly to emails, usually during the same work day. His email is: [email protected]
God Bless and much success,
Jim M.
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- September 23, 2011 at 4:20 am
Jacki, I have just checked your profile and see that the depth of your primary was 0.9mm. This means that the malignant cells will tend to stay confined to the lymph system, although nothing is certain with melanoma.
I am concerned that your oncologist has told you that interferon was only option. I don't like the concept of restricting treatments to stages because melanoma is so unpredictable.
These are some treatments that show promise and are worth considering regardless of the stage that you are at now: GM-CSF (Leukine) and surgery when needed, BRAF and similar inhibitors, Yervoy, IL-2, and anti PD-1 (MDX-1106). Of course, there is also ongoing research regarding vaccines and this may also be good to keep in mind.
Hope this helps.
Frank from Australia
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- September 23, 2011 at 4:20 am
Jacki, I have just checked your profile and see that the depth of your primary was 0.9mm. This means that the malignant cells will tend to stay confined to the lymph system, although nothing is certain with melanoma.
I am concerned that your oncologist has told you that interferon was only option. I don't like the concept of restricting treatments to stages because melanoma is so unpredictable.
These are some treatments that show promise and are worth considering regardless of the stage that you are at now: GM-CSF (Leukine) and surgery when needed, BRAF and similar inhibitors, Yervoy, IL-2, and anti PD-1 (MDX-1106). Of course, there is also ongoing research regarding vaccines and this may also be good to keep in mind.
Hope this helps.
Frank from Australia
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- September 23, 2011 at 7:06 am
There are varioous vacine trials that many Stage III patients are elgible for. There are very few approved treatments for stage III people that have had the known tumors removed. One questio is what shwed up on A PET/CT scan?
In my case there were lare bright spots at the location of both the supeerficial and the deep nodes.
A reafernce to have available when you discuss this with the Oncologist (hopefully a melanoma specialist) is found at: http://www.ncbi.nlm.nih.gov/pubmed/11069226
With that small a growth in the node there is a good chance that the spread hadd not progressed farther. i would want to know what the Onc prefers to do, whether to go deeper or to keep a close watch o the other nodes or what.
The healing is much faster and less painful with reduced numbness to the upper leg area if they don't go deeper.
Let us kknow what the Oc says.
JerryfromFauq stage IV (Not NED, but living!)
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- September 23, 2011 at 7:06 am
There are varioous vacine trials that many Stage III patients are elgible for. There are very few approved treatments for stage III people that have had the known tumors removed. One questio is what shwed up on A PET/CT scan?
In my case there were lare bright spots at the location of both the supeerficial and the deep nodes.
A reafernce to have available when you discuss this with the Oncologist (hopefully a melanoma specialist) is found at: http://www.ncbi.nlm.nih.gov/pubmed/11069226
With that small a growth in the node there is a good chance that the spread hadd not progressed farther. i would want to know what the Onc prefers to do, whether to go deeper or to keep a close watch o the other nodes or what.
The healing is much faster and less painful with reduced numbness to the upper leg area if they don't go deeper.
Let us kknow what the Oc says.
JerryfromFauq stage IV (Not NED, but living!)
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- September 23, 2011 at 10:27 am
Hi Jacki,
I agree with others, that there certainly are various treatment methods for your melanoma stage. As melanoma really is unpredictable, different kinds of methods actually should be tried out.
My aunt was diagnosed with melanoma stage 3 in 2007 and after several surgeries, she started virotherapy (it is believed to be the most effective in Latvia) because she was sensitive to chemo. Describing her experience, I just wanted to say, that you should be insistent on your doctor in order to know all the possibilties you have.
wishing all the best,H
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- September 23, 2011 at 10:27 am
Hi Jacki,
I agree with others, that there certainly are various treatment methods for your melanoma stage. As melanoma really is unpredictable, different kinds of methods actually should be tried out.
My aunt was diagnosed with melanoma stage 3 in 2007 and after several surgeries, she started virotherapy (it is believed to be the most effective in Latvia) because she was sensitive to chemo. Describing her experience, I just wanted to say, that you should be insistent on your doctor in order to know all the possibilties you have.
wishing all the best,H
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- September 23, 2011 at 12:19 pm
Hi Jacki, I did biochemotherapy after a Stage IIIc diagnosis in '03 and I'm still here and healthy. There are also clinical trials underway on Ipi/Yervoy for Stage III patients. I'd strongly recommend that you see an oncologist who specializes in melanoma treatment, so you hear all of the treatment options including clinical trials. Yes, Interferon is currently the only FDA-approved option for Stage III patients, but it's not the only option. Best wishes.
Rich
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- September 23, 2011 at 12:19 pm
Hi Jacki, I did biochemotherapy after a Stage IIIc diagnosis in '03 and I'm still here and healthy. There are also clinical trials underway on Ipi/Yervoy for Stage III patients. I'd strongly recommend that you see an oncologist who specializes in melanoma treatment, so you hear all of the treatment options including clinical trials. Yes, Interferon is currently the only FDA-approved option for Stage III patients, but it's not the only option. Best wishes.
Rich
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- September 23, 2011 at 9:33 pm
Hi Jacki,
How are you doing getting around.
Do you have lymphedema & any numbness from the surgery.
I know your positive attitude willgetyou through this.
Mary
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- September 24, 2011 at 1:35 am
Hi Mary,
I'm getting around pretty well. I am back at my apartment from my dad's place, which is a second floor apartment. Fortunately, I have found the stairs to be fairly easy…better than walking actually. The whole front half of my thigh is numb, but that's just at the skin level. I do feel pressure. I do have some pain which I believe is associated with the nerve being nicked or possibly cut during surgery. The pain is inner thigh, almost down to the knee, across the front of the thigh (mostly where my original WLE was done last year), and a little bit up the outside of my thigh all the way up to my bum.
I have an appointment with a lymphedema specialist on Tuesday. The thigh is slightly swollen, but not too bad. I'm only wearing compression up to the knee (any higher and it becomes a tourniquet!). Swelling increases with activity, so I am limiting my standing and walking significantly. I'm not sure how much of the swelling iswhat is normally expected from the surgery itself rather than lymphedema, but I'm trying the keep it away the best I can!
I have my down moments, as I am sure we all do. But, I know I can kick mel in the butt! I'm strong, I'm healthy (other than mel), and I'm driven to succeed!
Jacki
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- September 24, 2011 at 1:35 am
Hi Mary,
I'm getting around pretty well. I am back at my apartment from my dad's place, which is a second floor apartment. Fortunately, I have found the stairs to be fairly easy…better than walking actually. The whole front half of my thigh is numb, but that's just at the skin level. I do feel pressure. I do have some pain which I believe is associated with the nerve being nicked or possibly cut during surgery. The pain is inner thigh, almost down to the knee, across the front of the thigh (mostly where my original WLE was done last year), and a little bit up the outside of my thigh all the way up to my bum.
I have an appointment with a lymphedema specialist on Tuesday. The thigh is slightly swollen, but not too bad. I'm only wearing compression up to the knee (any higher and it becomes a tourniquet!). Swelling increases with activity, so I am limiting my standing and walking significantly. I'm not sure how much of the swelling iswhat is normally expected from the surgery itself rather than lymphedema, but I'm trying the keep it away the best I can!
I have my down moments, as I am sure we all do. But, I know I can kick mel in the butt! I'm strong, I'm healthy (other than mel), and I'm driven to succeed!
Jacki
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- September 27, 2011 at 7:18 pm
Hi Jacki,
Your oncologist's options sound limited. Bedause they are a big research facility, and the #1 rated cancer facility and the #1 rated Melanoma clinic, please contact the MD Anderson cancer center. They have the most options available for melanoma patients. Phone calls are cheap. Get a second opinion!
You also need to be open to the idea of being in a clinical trial. Have you been checked for the BRAF mutiation yet? You absoluely need to be because there are very viable options for those with the mutation.
Melanoma and Skin Center at MD Anderson (713)792-6800.
Stage III melanoma is nothing to play with. MD Anderson can give you the answers you seek.
Regards,
Scott
Recurrent, in-transit, Melanoma IIIc with 4 positive nodes. I have no disease and have been in several clinical trials, one where they made a vaccinie out of my own blood cells.
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- September 27, 2011 at 7:18 pm
Hi Jacki,
Your oncologist's options sound limited. Bedause they are a big research facility, and the #1 rated cancer facility and the #1 rated Melanoma clinic, please contact the MD Anderson cancer center. They have the most options available for melanoma patients. Phone calls are cheap. Get a second opinion!
You also need to be open to the idea of being in a clinical trial. Have you been checked for the BRAF mutiation yet? You absoluely need to be because there are very viable options for those with the mutation.
Melanoma and Skin Center at MD Anderson (713)792-6800.
Stage III melanoma is nothing to play with. MD Anderson can give you the answers you seek.
Regards,
Scott
Recurrent, in-transit, Melanoma IIIc with 4 positive nodes. I have no disease and have been in several clinical trials, one where they made a vaccinie out of my own blood cells.
-
- September 27, 2011 at 7:18 pm
Hi Jacki,
Your oncologist's options sound limited. Bedause they are a big research facility, and the #1 rated cancer facility and the #1 rated Melanoma clinic, please contact the MD Anderson cancer center. They have the most options available for melanoma patients. Phone calls are cheap. Get a second opinion!
You also need to be open to the idea of being in a clinical trial. Have you been checked for the BRAF mutiation yet? You absoluely need to be because there are very viable options for those with the mutation.
Melanoma and Skin Center at MD Anderson (713)792-6800.
Stage III melanoma is nothing to play with. MD Anderson can give you the answers you seek.
Regards,
Scott
Recurrent, in-transit, Melanoma IIIc with 4 positive nodes. I have no disease and have been in several clinical trials, one where they made a vaccinie out of my own blood cells.
-
- September 27, 2011 at 7:18 pm
Hi Jacki,
Your oncologist's options sound limited. Bedause they are a big research facility, and the #1 rated cancer facility and the #1 rated Melanoma clinic, please contact the MD Anderson cancer center. They have the most options available for melanoma patients. Phone calls are cheap. Get a second opinion!
You also need to be open to the idea of being in a clinical trial. Have you been checked for the BRAF mutiation yet? You absoluely need to be because there are very viable options for those with the mutation.
Melanoma and Skin Center at MD Anderson (713)792-6800.
Stage III melanoma is nothing to play with. MD Anderson can give you the answers you seek.
Regards,
Scott
Recurrent, in-transit, Melanoma IIIc with 4 positive nodes. I have no disease and have been in several clinical trials, one where they made a vaccinie out of my own blood cells.
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