› Forums › General Melanoma Community › staging Qs to ask ONC
- This topic has 16 replies, 4 voices, and was last updated 12 years, 12 months ago by
boot2aboot.
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- April 26, 2011 at 6:21 pm
Hi,
Hi,
i need all your experienced help asking the ONC questions about the tumor taken out of my armpit(in earlier posts)…the office called today to give me the news and i haven't called back until i am READY…i read the brochure thingy on this website and of course other stuff on internet and info the hospital sent me home but i still have WIDE gaps of knowledge… i still have questions…like, i read some tumors are hormone receptive and i still don't quite understand things like'mitotic'…and still trying to decifer BRAF and DNA analysis…and on and on…i know i am to hook up with a medical ONC practising with my surgeon and they have already planned immunotherapy for me..i also know i get 'scanned' in 3 mos again..but right now i just need to understand status and pertinent quesions I SHOULD BE ASKING NOW
thank you for your help
boots
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- April 26, 2011 at 7:12 pm
Aren't you the warrior that they were questioning the diagnosis? Melanoma versus something else? Truthfully, at this time I think you need to learn the diagnosis and NOT worry about BRAF and DNA testing and other things. You want to know what you are dealing with first. THEN go from there. BRAF and other treatments are typically more for stage IV warriors. Mitosis is more for people who have a primary lesion. You need to find out the diagnosis. Then find out if it is seen elsewhere in your body. THEN you'll have enough information to start asking intelligent questions. Right now, you don't. It really does make sense to have the staging and diagnosis completed before you take the next step. Clinical trials and other treatments depend upon staging so that part must be completed. When you have all the particulars of your current status, you can post them and then people can make comments and recommendations based on that info. Until then, we can't answer with much certainty about anything.
Best wishes,
Janner
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- April 26, 2011 at 7:12 pm
Aren't you the warrior that they were questioning the diagnosis? Melanoma versus something else? Truthfully, at this time I think you need to learn the diagnosis and NOT worry about BRAF and DNA testing and other things. You want to know what you are dealing with first. THEN go from there. BRAF and other treatments are typically more for stage IV warriors. Mitosis is more for people who have a primary lesion. You need to find out the diagnosis. Then find out if it is seen elsewhere in your body. THEN you'll have enough information to start asking intelligent questions. Right now, you don't. It really does make sense to have the staging and diagnosis completed before you take the next step. Clinical trials and other treatments depend upon staging so that part must be completed. When you have all the particulars of your current status, you can post them and then people can make comments and recommendations based on that info. Until then, we can't answer with much certainty about anything.
Best wishes,
Janner
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- April 26, 2011 at 7:19 pm
Janner,
they re-ran the path on the tumor numerous times and yup, it's melanoma…
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- April 26, 2011 at 7:21 pm
sorry, left out what i know so far…4cm melanoma tumor in axillary lymph nodes…CT body scan, bone scan, brain MRI…all clear except the tumor that was excised on Thursday
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- April 26, 2011 at 7:46 pm
So, you are probably stage IIIB or IIIC. Not sure exactly. Did they remove any other lymph nodes besides the involved one? However, you can do your own searches for clinical trials for stage III individuals who are NED. Most every clinical trial requires that they test you for whatever… so if you found a clinical trial for stage III / BRAF, they would most likely want to test you. Same with any other genetic variations. However, I'm not too sure how many of those trials include a stage III patient. Certainly, Interferon might be offered. It is still the only FDA approved treatment for stage III warriors. It doesn't have great numbers and can be quite toxic. It is, however, an option. Watch and monitor is another valid option for stage III. Other than that, you will have to scour the clinical trials (www.clinicaltrials.gov) to find something that might work for you. There aren't a lot of trials for people who have no obvious disease (adjuvant therapy). Most of the more toxic treatments want to have visible (by scan) tumors to see if there is any change in the tumor size during treatments. If a doctor isn't part of a clinical trial, they might not even know about other trials out there. This is why YOU get to do your own research. You can certainly discuss it with your onc, but nothing is PROVEN at the clinical trial stage. Talk to the doc and get their recommendations. Then look for clinical trials that might also be of interest to you. Those are really your best options.
Best wishes,
Janner
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- April 26, 2011 at 7:46 pm
So, you are probably stage IIIB or IIIC. Not sure exactly. Did they remove any other lymph nodes besides the involved one? However, you can do your own searches for clinical trials for stage III individuals who are NED. Most every clinical trial requires that they test you for whatever… so if you found a clinical trial for stage III / BRAF, they would most likely want to test you. Same with any other genetic variations. However, I'm not too sure how many of those trials include a stage III patient. Certainly, Interferon might be offered. It is still the only FDA approved treatment for stage III warriors. It doesn't have great numbers and can be quite toxic. It is, however, an option. Watch and monitor is another valid option for stage III. Other than that, you will have to scour the clinical trials (www.clinicaltrials.gov) to find something that might work for you. There aren't a lot of trials for people who have no obvious disease (adjuvant therapy). Most of the more toxic treatments want to have visible (by scan) tumors to see if there is any change in the tumor size during treatments. If a doctor isn't part of a clinical trial, they might not even know about other trials out there. This is why YOU get to do your own research. You can certainly discuss it with your onc, but nothing is PROVEN at the clinical trial stage. Talk to the doc and get their recommendations. Then look for clinical trials that might also be of interest to you. Those are really your best options.
Best wishes,
Janner
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- April 26, 2011 at 7:21 pm
sorry, left out what i know so far…4cm melanoma tumor in axillary lymph nodes…CT body scan, bone scan, brain MRI…all clear except the tumor that was excised on Thursday
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- April 26, 2011 at 7:19 pm
Janner,
they re-ran the path on the tumor numerous times and yup, it's melanoma…
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- April 26, 2011 at 11:45 pm
As far as the melanoma goes, it seems you are currently stage three. Do not worry about mitotic rate at this point as it applies to stage one and two.
Ask you onc what stage you are, and what they are type of melanoma immunotherapy they are planning on doing at this juncture. Ask the onc if they are possibly looking at interferon too.
BRAF is discussed with stage four and not stage three, but you could also have the tumor tested to see if you are BRAF positive. If positive, this may be an option for the future if needed as well.
Since you mentioned immunotherapy in your post, I took the liberty and found 10 trials for melanoma immunotherapy for stage three and four at clinicaltrials.gov. I did also find one of those 10 trials is for melanoma DNA immunotherapy for both stage three and four. You could also be involved in a trial with something called adoptive immunotherapy which has trials with tumor infiltrating lymphocytes (TIL) and interleukin-2 (IL-2).
But please discuss this with the doctors first, as researching these trials yourself first may just confuse you further.
Good luck,
Michael
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- April 26, 2011 at 11:45 pm
As far as the melanoma goes, it seems you are currently stage three. Do not worry about mitotic rate at this point as it applies to stage one and two.
Ask you onc what stage you are, and what they are type of melanoma immunotherapy they are planning on doing at this juncture. Ask the onc if they are possibly looking at interferon too.
BRAF is discussed with stage four and not stage three, but you could also have the tumor tested to see if you are BRAF positive. If positive, this may be an option for the future if needed as well.
Since you mentioned immunotherapy in your post, I took the liberty and found 10 trials for melanoma immunotherapy for stage three and four at clinicaltrials.gov. I did also find one of those 10 trials is for melanoma DNA immunotherapy for both stage three and four. You could also be involved in a trial with something called adoptive immunotherapy which has trials with tumor infiltrating lymphocytes (TIL) and interleukin-2 (IL-2).
But please discuss this with the doctors first, as researching these trials yourself first may just confuse you further.
Good luck,
Michael
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- April 27, 2011 at 12:16 am
As I think further over dinner…..Please do not research this further either here or online until you talk to your doctor.
I say this with all due respect, but I think you have been reading both here and online too much. Keep in mind there are many here with different stages, circumstances and treatments, as well as hundreds of clinical trials on clinical trials.gov. I do not wish for you to get tied up further in what goes on here until you have a clear understanding of what you, yourself are dealing with.
Believe me, I know where you are coming from, as 2 and 1/2 years ago when I was first diagnosed I made the mistake of misdiagnosing myself based on what my derm told me and what I found online. It can be overwhelming and confusing at first.
Also, take someone with you to all future appointments, take notes, and ask the doctor if they will mind you recording the conversation for future reference. Get copies of your pathology reports and all future doctor visits, so you have a paper record. I did not fully understand what was going on until I had the pathology report and other information in my hands and was able to read it.
Michael
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- April 27, 2011 at 12:16 am
As I think further over dinner…..Please do not research this further either here or online until you talk to your doctor.
I say this with all due respect, but I think you have been reading both here and online too much. Keep in mind there are many here with different stages, circumstances and treatments, as well as hundreds of clinical trials on clinical trials.gov. I do not wish for you to get tied up further in what goes on here until you have a clear understanding of what you, yourself are dealing with.
Believe me, I know where you are coming from, as 2 and 1/2 years ago when I was first diagnosed I made the mistake of misdiagnosing myself based on what my derm told me and what I found online. It can be overwhelming and confusing at first.
Also, take someone with you to all future appointments, take notes, and ask the doctor if they will mind you recording the conversation for future reference. Get copies of your pathology reports and all future doctor visits, so you have a paper record. I did not fully understand what was going on until I had the pathology report and other information in my hands and was able to read it.
Michael
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- April 27, 2011 at 3:53 am
I have always thought that Knowledge is power. There is not a single thing that you can do, that will do any good, until you know where you stand. Then you can figure out where you need to go. Take that next step….and then the next, and the next…… you can't make decisions about your future until you know what you holding onto now. GOOD LUCK!!!
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- April 27, 2011 at 3:53 am
I have always thought that Knowledge is power. There is not a single thing that you can do, that will do any good, until you know where you stand. Then you can figure out where you need to go. Take that next step….and then the next, and the next…… you can't make decisions about your future until you know what you holding onto now. GOOD LUCK!!!
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