› Forums › General Melanoma Community › Little Advice?
- This topic has 27 replies, 6 voices, and was last updated 12 years, 9 months ago by
kristine.
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- August 17, 2012 at 7:57 pm
I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area….Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr.
I am at a crossroads and looking for advice, so please feel free to chime in. I am about 1.5 yrs NED but didn't have the typical diagnosis. I had a small bump removed which pathology suggested was metatstatic melanoma. I had seen 3 oncologists in Chicago area….Dr. Marilyn Evrard, Dr. Howard Kaufman and Dr. Jon Richards. All had/have varying opinions. Dr. Evrard not being a melanoma specialist suggested seeing Dr. Clark at Loyola, Dr. Gajewski at U of C or the two aforementioned doctors as they are the regional experts.Dr. Evrard had the scans performed(no mets anywhere) concurred with doctors and said I potentially have a good prognosisbased on her dealings with melanoma but I'd be better served by seeing an expert. Based on nisurance I saw Richards with a second opinion from Kaufman. Since there is no primary leison I'm lumped into a unique group of unknow primary. Now for the adivce from you, the valiant warriors out there. Not to create prejuidice against either doctor I will only say that one feels I'm stage 4 with uknown primary and require extensive scanning (3 months CT of Chest down to Pelvis & semi annual brain MRI). Risk of recurrence is low/medium.
The other feels that there possibly was no primary or my body had immune reaction to destroy it and I'm low risk for recurrence and require semi annual scan of chest & neck. Let me mention that both had my original path slides reviewd and both were suggestive of metastatic disease but didn't say metastatic. Dermal melanoma has been thrown around and I have researched it and it seems a possibility but again nothing is concrete and as I have realized anything is possible with this ugly disease…just doesn't seem fair. I don't post much here but I do follow and check to see how people are doing. I figured with all the good advice and support I see on here, someone can help me with making a choice in regards to which doctor's follow up plan do I go with. I'm scared, confused and lost. I just want to stay on top of this but not subject myself to scans etc that may be harmful in future.
Finally anyone familiar with hematocrit on blood test? Mine has been low on last 2 tests but not bad….not bad enough for doctors to be concerned. Anyone have any ideas on that?
Stay the course and fight the fight. You're some of the bravest people out there!!! God bless!!!
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- August 17, 2012 at 8:13 pm
this probably isn't too helpful, but you have 2 differing opinions from Kaufman and Richards. . what about trying to get a 3rd opinion from Gajewski or Clark or Kuzel (at Northwestern) or Brockstein (North Shore University Health System), or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)? then if the 3rd opinion agrees with one of the two opinions you have, maybe that will bring some clarity
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- August 17, 2012 at 8:23 pm
http://answers.yahoo.com/question/index?qid=20100705163337AAqCOI9
Best Answer – Chosen by Voters
Could still be melanoma, the human immune system doesn't attack all forms of cancer and the change in the hematocrit won't make a difference (its just to do with changes in oxygen levels) neither will the platelet counts as it isn't associated with cancer (except bone cancer).Was there a mention of any skin moles or lesions? If so what was the outcome of the ABCD test? (asymetry, border, color and diameter). That will be key in finding out if the diagnosis is melanoma.
But based on the results and if they have several signs of skin cancer then yes it is still likely that they have skin cancer.
Source(s):
Husband is a bio professor and is sitting next to me!- 2 years ago
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- August 17, 2012 at 8:23 pm
http://answers.yahoo.com/question/index?qid=20100705163337AAqCOI9
Best Answer – Chosen by Voters
Could still be melanoma, the human immune system doesn't attack all forms of cancer and the change in the hematocrit won't make a difference (its just to do with changes in oxygen levels) neither will the platelet counts as it isn't associated with cancer (except bone cancer).Was there a mention of any skin moles or lesions? If so what was the outcome of the ABCD test? (asymetry, border, color and diameter). That will be key in finding out if the diagnosis is melanoma.
But based on the results and if they have several signs of skin cancer then yes it is still likely that they have skin cancer.
Source(s):
Husband is a bio professor and is sitting next to me!- 2 years ago
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- August 17, 2012 at 8:23 pm
http://answers.yahoo.com/question/index?qid=20100705163337AAqCOI9
Best Answer – Chosen by Voters
Could still be melanoma, the human immune system doesn't attack all forms of cancer and the change in the hematocrit won't make a difference (its just to do with changes in oxygen levels) neither will the platelet counts as it isn't associated with cancer (except bone cancer).Was there a mention of any skin moles or lesions? If so what was the outcome of the ABCD test? (asymetry, border, color and diameter). That will be key in finding out if the diagnosis is melanoma.
But based on the results and if they have several signs of skin cancer then yes it is still likely that they have skin cancer.
Source(s):
Husband is a bio professor and is sitting next to me!- 2 years ago
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- August 17, 2012 at 8:13 pm
this probably isn't too helpful, but you have 2 differing opinions from Kaufman and Richards. . what about trying to get a 3rd opinion from Gajewski or Clark or Kuzel (at Northwestern) or Brockstein (North Shore University Health System), or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)? then if the 3rd opinion agrees with one of the two opinions you have, maybe that will bring some clarity
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- August 17, 2012 at 8:13 pm
this probably isn't too helpful, but you have 2 differing opinions from Kaufman and Richards. . what about trying to get a 3rd opinion from Gajewski or Clark or Kuzel (at Northwestern) or Brockstein (North Shore University Health System), or even going outside Chicago to maybe Madison (UW Carbone Cancer Center)? then if the 3rd opinion agrees with one of the two opinions you have, maybe that will bring some clarity
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- August 18, 2012 at 2:26 pm
Hi!
We live in the Chicago area and my son (you can read his profile) has seen all the oncologists you mention (except Dr. Clark). They all are pretty great, but they all have limitations. With that being said, I think you should see Dr. Weber at Moffit, Dr. Hodi at Dana-Farber, Dr. Kirkwood in Philadelphia, and Dr. Ribas and Dr. Hamid in LA. You can also email Dr. Flaherty at Mass General and he will email you back with advice!! These guys are top-notch melanoma specialists, and their opinions on what to do in your situation would be based on years of scientific study. Unfortunately, Chicago is not the best place to be with a melanoma diagnosis. You need to go elsewhere. I know it's expensive, but it's important to get a consensus of opinions from guys who see melanoma day in and day out and study it. Then you can decide what to do after you hear what the very best have to say. That's what we did.
I want you to know that you are in a good spot now. You don't have active disease and have the time to do all this "leg" work to get the very best opinions in the country. Jeff and his wife traveled to see these doctors after he progressed to stage 4 and "failed" IL2. I wish we would have sent him out when he was stage 3 and NED. I hate having regrets, but this is a big one I have…
Please keep us informed and take care. God Bless!
Jeff's Mom (Bridgette)
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- August 18, 2012 at 5:11 pm
Do you say Chicago is limited because they don't do many clinical trials? If someone was in Chicago and couldn't afford to travel all over, what is the best Chicago place you'd recommend? Can the Chicago Docs refer patients out to clinical trials at other places?
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- August 18, 2012 at 5:11 pm
Do you say Chicago is limited because they don't do many clinical trials? If someone was in Chicago and couldn't afford to travel all over, what is the best Chicago place you'd recommend? Can the Chicago Docs refer patients out to clinical trials at other places?
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- August 18, 2012 at 5:11 pm
Do you say Chicago is limited because they don't do many clinical trials? If someone was in Chicago and couldn't afford to travel all over, what is the best Chicago place you'd recommend? Can the Chicago Docs refer patients out to clinical trials at other places?
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- August 18, 2012 at 2:26 pm
Hi!
We live in the Chicago area and my son (you can read his profile) has seen all the oncologists you mention (except Dr. Clark). They all are pretty great, but they all have limitations. With that being said, I think you should see Dr. Weber at Moffit, Dr. Hodi at Dana-Farber, Dr. Kirkwood in Philadelphia, and Dr. Ribas and Dr. Hamid in LA. You can also email Dr. Flaherty at Mass General and he will email you back with advice!! These guys are top-notch melanoma specialists, and their opinions on what to do in your situation would be based on years of scientific study. Unfortunately, Chicago is not the best place to be with a melanoma diagnosis. You need to go elsewhere. I know it's expensive, but it's important to get a consensus of opinions from guys who see melanoma day in and day out and study it. Then you can decide what to do after you hear what the very best have to say. That's what we did.
I want you to know that you are in a good spot now. You don't have active disease and have the time to do all this "leg" work to get the very best opinions in the country. Jeff and his wife traveled to see these doctors after he progressed to stage 4 and "failed" IL2. I wish we would have sent him out when he was stage 3 and NED. I hate having regrets, but this is a big one I have…
Please keep us informed and take care. God Bless!
Jeff's Mom (Bridgette)
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- August 18, 2012 at 2:26 pm
Hi!
We live in the Chicago area and my son (you can read his profile) has seen all the oncologists you mention (except Dr. Clark). They all are pretty great, but they all have limitations. With that being said, I think you should see Dr. Weber at Moffit, Dr. Hodi at Dana-Farber, Dr. Kirkwood in Philadelphia, and Dr. Ribas and Dr. Hamid in LA. You can also email Dr. Flaherty at Mass General and he will email you back with advice!! These guys are top-notch melanoma specialists, and their opinions on what to do in your situation would be based on years of scientific study. Unfortunately, Chicago is not the best place to be with a melanoma diagnosis. You need to go elsewhere. I know it's expensive, but it's important to get a consensus of opinions from guys who see melanoma day in and day out and study it. Then you can decide what to do after you hear what the very best have to say. That's what we did.
I want you to know that you are in a good spot now. You don't have active disease and have the time to do all this "leg" work to get the very best opinions in the country. Jeff and his wife traveled to see these doctors after he progressed to stage 4 and "failed" IL2. I wish we would have sent him out when he was stage 3 and NED. I hate having regrets, but this is a big one I have…
Please keep us informed and take care. God Bless!
Jeff's Mom (Bridgette)
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- August 19, 2012 at 1:29 am
Blood tests are completely useless until melanoma completely interrupts your liver and/or kidney functions – and that's obviously not the case for you.
Semi-annual scans for the next couple of years seems reasonable. Also, don't forget to enjoy life! (it's a non-renewable resource).
Best wishes,
Harry
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- August 19, 2012 at 1:29 am
Blood tests are completely useless until melanoma completely interrupts your liver and/or kidney functions – and that's obviously not the case for you.
Semi-annual scans for the next couple of years seems reasonable. Also, don't forget to enjoy life! (it's a non-renewable resource).
Best wishes,
Harry
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- August 19, 2012 at 1:29 am
Blood tests are completely useless until melanoma completely interrupts your liver and/or kidney functions – and that's obviously not the case for you.
Semi-annual scans for the next couple of years seems reasonable. Also, don't forget to enjoy life! (it's a non-renewable resource).
Best wishes,
Harry
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- August 21, 2012 at 6:39 pm
My husband has seen Dr. Richards and currently is seeing Dr. Gajewski. David has been Gajewski's patient for the last 2 years (Stage IV Metastatic Melanoma) with unknown primary. Please check out http://www.skinofsteel.org – Susan Steel – she is an advocate and survivor in the Chicago area. Also, if you email me ([email protected]) I can give you her direct contact information as she is amazing with referrals, suggestions, etc.
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- August 21, 2012 at 6:39 pm
My husband has seen Dr. Richards and currently is seeing Dr. Gajewski. David has been Gajewski's patient for the last 2 years (Stage IV Metastatic Melanoma) with unknown primary. Please check out http://www.skinofsteel.org – Susan Steel – she is an advocate and survivor in the Chicago area. Also, if you email me ([email protected]) I can give you her direct contact information as she is amazing with referrals, suggestions, etc.
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- August 21, 2012 at 6:39 pm
My husband has seen Dr. Richards and currently is seeing Dr. Gajewski. David has been Gajewski's patient for the last 2 years (Stage IV Metastatic Melanoma) with unknown primary. Please check out http://www.skinofsteel.org – Susan Steel – she is an advocate and survivor in the Chicago area. Also, if you email me ([email protected]) I can give you her direct contact information as she is amazing with referrals, suggestions, etc.
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