› Forums › General Melanoma Community › Melanoma back after 10 years
- This topic has 45 replies, 7 voices, and was last updated 11 years, 4 months ago by
geminilion.
- Post
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- January 18, 2014 at 12:54 am
Had stage 1, wide local incision and removal of satellite nodes. Was given the all clear, was told to only have check ups with derm every 6 months. Went for yearly exam and had a chest x ray that showed a nodule on my lung.
Did CT scan and my dr. was concerned enough to have me go for a PET scan. Scan showed mass, 2 nodules and possible lymph node involvement. This was in October. I Just had a biopsy (doctors not communicating, etc.) and I have several masses in my right lung and lesions on brain (had brain MRI w/contrast), lymph nodes were positive.
I will wait another week for further information as all of the tests have not been completed. I had no symptoms except for a cough and shortness of breath that developed in late Summer. Since then I have grown very weak and feel ill pretty much all of the time.
My thoracic surgeon and primary doctor are going to decide what my next steps should be. I have no idea what to expect. I am scared, the brain lesions really scare me, I am wondering where else the melanoma could be?
So I am assuming I am stage IV, I guess he doesn't want to stage me until all tests are complete. Any advice or suggestions would be greatly appreciated.
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- January 18, 2014 at 1:06 am
If the lung masses are indeed Melanoma you are Stage IV. You don't know for sure until that is verified. if it is an infection then that could also cause lymph nodes to lite up. Are yuou seeing a melanoma specialist, GP, Derm, general Onc? I would pussh them to get busy aand provide answers. Have they did any needle biopsies? I would have expected that to have been done vary soon after the scans. Hop[ing for an infection!
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- January 18, 2014 at 1:06 am
If the lung masses are indeed Melanoma you are Stage IV. You don't know for sure until that is verified. if it is an infection then that could also cause lymph nodes to lite up. Are yuou seeing a melanoma specialist, GP, Derm, general Onc? I would pussh them to get busy aand provide answers. Have they did any needle biopsies? I would have expected that to have been done vary soon after the scans. Hop[ing for an infection!
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- January 18, 2014 at 1:06 am
If the lung masses are indeed Melanoma you are Stage IV. You don't know for sure until that is verified. if it is an infection then that could also cause lymph nodes to lite up. Are yuou seeing a melanoma specialist, GP, Derm, general Onc? I would pussh them to get busy aand provide answers. Have they did any needle biopsies? I would have expected that to have been done vary soon after the scans. Hop[ing for an infection!
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- January 18, 2014 at 2:29 am
Is it true that you had a routine chest X-ray in July that showed a suspicious lesion, a CT and PET in October that showed several masses and you're just gettng a biopsy now and you don't even have the results yet??!! There is no way I would tolerate such delays in getting scans, results and treatment.
If this turns out to be melanoma (which you do not know yet) I strongly suggest that you get to an NCI-designated cancer center that specializes in melanoma as soon as possible. Ask your current doctor and surgeon for copies of all of your medical records AND a CD of all your scan images (you have a legal right to these records) and take them to a melanoma specialty center. If this is Stage IV melanoma with brain mets, you really don't have time to sit around whistleing Dixie while waiting for your your doctors to "communicate" with each other. Do either of them even realize that melanoma treatment has been revolutionized within the last 2 or 3 years and that there are a lot of powerful treatments out there now? I somehow doubt it.
I have heard of more than one example here where an oncologist picked up the phone while the patient was in the office to get a surgical appointment set up for the patient within a couple of days. That is the kind of caring and attention you need and deserve.
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- January 18, 2014 at 2:29 am
Is it true that you had a routine chest X-ray in July that showed a suspicious lesion, a CT and PET in October that showed several masses and you're just gettng a biopsy now and you don't even have the results yet??!! There is no way I would tolerate such delays in getting scans, results and treatment.
If this turns out to be melanoma (which you do not know yet) I strongly suggest that you get to an NCI-designated cancer center that specializes in melanoma as soon as possible. Ask your current doctor and surgeon for copies of all of your medical records AND a CD of all your scan images (you have a legal right to these records) and take them to a melanoma specialty center. If this is Stage IV melanoma with brain mets, you really don't have time to sit around whistleing Dixie while waiting for your your doctors to "communicate" with each other. Do either of them even realize that melanoma treatment has been revolutionized within the last 2 or 3 years and that there are a lot of powerful treatments out there now? I somehow doubt it.
I have heard of more than one example here where an oncologist picked up the phone while the patient was in the office to get a surgical appointment set up for the patient within a couple of days. That is the kind of caring and attention you need and deserve.
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- January 18, 2014 at 12:57 pm
I was at NYU Lagone in NYC and I know they have some of the best doctors in the country. I am not whistling Dixie, I've been on the phone constantly..what could I have done differently?
And I do know it's melanoma, 2 different doctors told me it was and it's on my discharge papers. Thanks for making me feel even worse.
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- January 18, 2014 at 12:57 pm
I was at NYU Lagone in NYC and I know they have some of the best doctors in the country. I am not whistling Dixie, I've been on the phone constantly..what could I have done differently?
And I do know it's melanoma, 2 different doctors told me it was and it's on my discharge papers. Thanks for making me feel even worse.
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- January 18, 2014 at 12:57 pm
I was at NYU Lagone in NYC and I know they have some of the best doctors in the country. I am not whistling Dixie, I've been on the phone constantly..what could I have done differently?
And I do know it's melanoma, 2 different doctors told me it was and it's on my discharge papers. Thanks for making me feel even worse.
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- January 18, 2014 at 6:17 pm
Hey, geminiooion, I'm sorry if my post made you feel badly. That most certainly was not my intention. However, your original post on this thread did not provide any specifics about your location or doctors and I jumped to the conclusion that you were not going to a melanoma specialty center. You have since clarified that you are going to NYU and that you have been trying without success to move this process along more quickly.
I think the most important question now is not what you could have done differently, but what you should do differently going forward from here. I hope and expect that others on this forum can give you advice about what to do when you encounter unacceptable delays when trying to get scans, tests and treatments.
If you want to stay with NYU, I have heard several patients speak highly of Dr. Anna Pavlick. Perhaps you could make an appointment to see her. If you are willing to leave NYU, Memorial Sloan Kettering also has an outstanding melanoma program. Given the unconscionable delays you've been experiencing with your current treatment team, I would still advise you to physically get your medical records (including a CD of your scans) from NYU and bring them to whatever other institution you want to go to. Do not wait for NYU to send them for you. It's fine if both you and NYU transmit the records– so they get sent twice, so what?– but you really don't want to risk any more delays.
It is sad but true that to get the best care possible for melanoma, you have to be your own best health advocate. You have to go to the trouble of educating yourself about the disease and the possible treatment options available– which you are doing by reading and posting on this site. Once you understand the treatments and your options, you often have to push your doctors to do things they don't usually do– maybe asking them to order CT scans instead of PET scans, or assessing treatment results sooner than they normally do, or prescribing a radiological or chemical treatment they aren't all that familiar with. Advocating for yourself politely but with persistence is going to get you the best result. If you know that it usually takes 2 or 3 days to get a test result and you haven't heard after 4 or 5 days, start calling every day– maybe 2 or 3 times a day– until you get the information you need. Most people know that doctors are busy and patients don't like to make a pest of themselves. But when you are dealing with Stage IV melanoma, go ahead and make a pest of yourself if that's what it takes.
Lastly, while 2 doctors have told you that these lesions are melanoma and they are probably correct, no insurance company is going to pay for melanoma treatments unless and until a board-certified pathologist looks at the microscope slides and makes the diagnosis. So getting a copy of your path report is going to be crucial for your future treatment. Also ask if your tumor tissue was tested for the BRAF mutation. If it was, get a copy of that report, too. If it was not, insist that the tissue be sent out for testing.
Again, I do apologize my prior post made you feel badly. But, please, on Monday morning go to the medical records department at NYU and get copies of all of your records– pay the photocopy fee if necessary. Every patient should always keep copies of every test result and physician notes. Then go to the oncology department and make an appointment with another oncologist– hopefully Dr. Pavlick. Or go to MSK and make an appointment there. I'm sure that there are people here who can recommend a good melanoma specialist at MSK.
What should you have done differently? Nothing–you were stuck. What can you do differently in the future? Take the bull by the horns and don't take "No" for a answer.
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- January 18, 2014 at 6:17 pm
Hey, geminiooion, I'm sorry if my post made you feel badly. That most certainly was not my intention. However, your original post on this thread did not provide any specifics about your location or doctors and I jumped to the conclusion that you were not going to a melanoma specialty center. You have since clarified that you are going to NYU and that you have been trying without success to move this process along more quickly.
I think the most important question now is not what you could have done differently, but what you should do differently going forward from here. I hope and expect that others on this forum can give you advice about what to do when you encounter unacceptable delays when trying to get scans, tests and treatments.
If you want to stay with NYU, I have heard several patients speak highly of Dr. Anna Pavlick. Perhaps you could make an appointment to see her. If you are willing to leave NYU, Memorial Sloan Kettering also has an outstanding melanoma program. Given the unconscionable delays you've been experiencing with your current treatment team, I would still advise you to physically get your medical records (including a CD of your scans) from NYU and bring them to whatever other institution you want to go to. Do not wait for NYU to send them for you. It's fine if both you and NYU transmit the records– so they get sent twice, so what?– but you really don't want to risk any more delays.
It is sad but true that to get the best care possible for melanoma, you have to be your own best health advocate. You have to go to the trouble of educating yourself about the disease and the possible treatment options available– which you are doing by reading and posting on this site. Once you understand the treatments and your options, you often have to push your doctors to do things they don't usually do– maybe asking them to order CT scans instead of PET scans, or assessing treatment results sooner than they normally do, or prescribing a radiological or chemical treatment they aren't all that familiar with. Advocating for yourself politely but with persistence is going to get you the best result. If you know that it usually takes 2 or 3 days to get a test result and you haven't heard after 4 or 5 days, start calling every day– maybe 2 or 3 times a day– until you get the information you need. Most people know that doctors are busy and patients don't like to make a pest of themselves. But when you are dealing with Stage IV melanoma, go ahead and make a pest of yourself if that's what it takes.
Lastly, while 2 doctors have told you that these lesions are melanoma and they are probably correct, no insurance company is going to pay for melanoma treatments unless and until a board-certified pathologist looks at the microscope slides and makes the diagnosis. So getting a copy of your path report is going to be crucial for your future treatment. Also ask if your tumor tissue was tested for the BRAF mutation. If it was, get a copy of that report, too. If it was not, insist that the tissue be sent out for testing.
Again, I do apologize my prior post made you feel badly. But, please, on Monday morning go to the medical records department at NYU and get copies of all of your records– pay the photocopy fee if necessary. Every patient should always keep copies of every test result and physician notes. Then go to the oncology department and make an appointment with another oncologist– hopefully Dr. Pavlick. Or go to MSK and make an appointment there. I'm sure that there are people here who can recommend a good melanoma specialist at MSK.
What should you have done differently? Nothing–you were stuck. What can you do differently in the future? Take the bull by the horns and don't take "No" for a answer.
-
- January 18, 2014 at 6:17 pm
Hey, geminiooion, I'm sorry if my post made you feel badly. That most certainly was not my intention. However, your original post on this thread did not provide any specifics about your location or doctors and I jumped to the conclusion that you were not going to a melanoma specialty center. You have since clarified that you are going to NYU and that you have been trying without success to move this process along more quickly.
I think the most important question now is not what you could have done differently, but what you should do differently going forward from here. I hope and expect that others on this forum can give you advice about what to do when you encounter unacceptable delays when trying to get scans, tests and treatments.
If you want to stay with NYU, I have heard several patients speak highly of Dr. Anna Pavlick. Perhaps you could make an appointment to see her. If you are willing to leave NYU, Memorial Sloan Kettering also has an outstanding melanoma program. Given the unconscionable delays you've been experiencing with your current treatment team, I would still advise you to physically get your medical records (including a CD of your scans) from NYU and bring them to whatever other institution you want to go to. Do not wait for NYU to send them for you. It's fine if both you and NYU transmit the records– so they get sent twice, so what?– but you really don't want to risk any more delays.
It is sad but true that to get the best care possible for melanoma, you have to be your own best health advocate. You have to go to the trouble of educating yourself about the disease and the possible treatment options available– which you are doing by reading and posting on this site. Once you understand the treatments and your options, you often have to push your doctors to do things they don't usually do– maybe asking them to order CT scans instead of PET scans, or assessing treatment results sooner than they normally do, or prescribing a radiological or chemical treatment they aren't all that familiar with. Advocating for yourself politely but with persistence is going to get you the best result. If you know that it usually takes 2 or 3 days to get a test result and you haven't heard after 4 or 5 days, start calling every day– maybe 2 or 3 times a day– until you get the information you need. Most people know that doctors are busy and patients don't like to make a pest of themselves. But when you are dealing with Stage IV melanoma, go ahead and make a pest of yourself if that's what it takes.
Lastly, while 2 doctors have told you that these lesions are melanoma and they are probably correct, no insurance company is going to pay for melanoma treatments unless and until a board-certified pathologist looks at the microscope slides and makes the diagnosis. So getting a copy of your path report is going to be crucial for your future treatment. Also ask if your tumor tissue was tested for the BRAF mutation. If it was, get a copy of that report, too. If it was not, insist that the tissue be sent out for testing.
Again, I do apologize my prior post made you feel badly. But, please, on Monday morning go to the medical records department at NYU and get copies of all of your records– pay the photocopy fee if necessary. Every patient should always keep copies of every test result and physician notes. Then go to the oncology department and make an appointment with another oncologist– hopefully Dr. Pavlick. Or go to MSK and make an appointment there. I'm sure that there are people here who can recommend a good melanoma specialist at MSK.
What should you have done differently? Nothing–you were stuck. What can you do differently in the future? Take the bull by the horns and don't take "No" for a answer.
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- January 19, 2014 at 12:22 pm
That's okay, I was being sensitive anyway 🙂 Believe me, if it weren't for the fact I was on the phone with primary and surgeon I would probably still be waiting. I should have just gone to another doctor but I guess that's water under the bridge.
Thanks for all of your suggestions, I appreciate it greatly.
Be well my friend.
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- January 19, 2014 at 12:22 pm
That's okay, I was being sensitive anyway 🙂 Believe me, if it weren't for the fact I was on the phone with primary and surgeon I would probably still be waiting. I should have just gone to another doctor but I guess that's water under the bridge.
Thanks for all of your suggestions, I appreciate it greatly.
Be well my friend.
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- January 19, 2014 at 12:22 pm
That's okay, I was being sensitive anyway 🙂 Believe me, if it weren't for the fact I was on the phone with primary and surgeon I would probably still be waiting. I should have just gone to another doctor but I guess that's water under the bridge.
Thanks for all of your suggestions, I appreciate it greatly.
Be well my friend.
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- January 18, 2014 at 2:29 am
Is it true that you had a routine chest X-ray in July that showed a suspicious lesion, a CT and PET in October that showed several masses and you're just gettng a biopsy now and you don't even have the results yet??!! There is no way I would tolerate such delays in getting scans, results and treatment.
If this turns out to be melanoma (which you do not know yet) I strongly suggest that you get to an NCI-designated cancer center that specializes in melanoma as soon as possible. Ask your current doctor and surgeon for copies of all of your medical records AND a CD of all your scan images (you have a legal right to these records) and take them to a melanoma specialty center. If this is Stage IV melanoma with brain mets, you really don't have time to sit around whistleing Dixie while waiting for your your doctors to "communicate" with each other. Do either of them even realize that melanoma treatment has been revolutionized within the last 2 or 3 years and that there are a lot of powerful treatments out there now? I somehow doubt it.
I have heard of more than one example here where an oncologist picked up the phone while the patient was in the office to get a surgical appointment set up for the patient within a couple of days. That is the kind of caring and attention you need and deserve.
-
- January 18, 2014 at 11:08 am
I'm sorry to hear about your situation–it reminds me of mine (recurrence after 10 years). I agree that you must, must, must get with a mel specialist. Post your location so folks can make suggestions. Hopefully the brain lesions can be treated with targeted radiation (gamma knife), which is an easy procedure. You should also be tested for the BRAF mutation to determine whether you are eligible for a BRAF inhibitor. You also want to consider the possibility of a trial. Since you are treatment naive, you may be eligible for a PD-1 trial.
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- January 18, 2014 at 11:08 am
I'm sorry to hear about your situation–it reminds me of mine (recurrence after 10 years). I agree that you must, must, must get with a mel specialist. Post your location so folks can make suggestions. Hopefully the brain lesions can be treated with targeted radiation (gamma knife), which is an easy procedure. You should also be tested for the BRAF mutation to determine whether you are eligible for a BRAF inhibitor. You also want to consider the possibility of a trial. Since you are treatment naive, you may be eligible for a PD-1 trial.
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- January 18, 2014 at 12:55 pm
The doctor told me it was melanoma and that I had brain lesions. Also, that the path report was not complete so maybe there's more? My discharge paper clearly says melanoma. As for the delays, I didn't really tolerate it, I was on the phone every 4 days or so..what was I going to do? If there are a limited number of doctors that take my insurance?
When I told the resident and the nurse at NYU how long I had been waiting for biopsies their eyebrows shot up and thier mouths opened like What! So now I have to wonder how the delay has effected my outcome and how much worse my situation got while waiting.
Thanks for the replies and God bless you all…..I'm a fighter but I'm also a realist..I'll give it all I got.
Hugs to all…..
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- January 18, 2014 at 12:55 pm
The doctor told me it was melanoma and that I had brain lesions. Also, that the path report was not complete so maybe there's more? My discharge paper clearly says melanoma. As for the delays, I didn't really tolerate it, I was on the phone every 4 days or so..what was I going to do? If there are a limited number of doctors that take my insurance?
When I told the resident and the nurse at NYU how long I had been waiting for biopsies their eyebrows shot up and thier mouths opened like What! So now I have to wonder how the delay has effected my outcome and how much worse my situation got while waiting.
Thanks for the replies and God bless you all…..I'm a fighter but I'm also a realist..I'll give it all I got.
Hugs to all…..
-
- January 18, 2014 at 5:42 pm
Important to get tested for BRAF (done via FNA or biopsy). To the extent you have a heavy tumor burden (I did) and you are postive for BRAF, the BRAF/MEK inhibitors are the quickest way to get a reduction (when they work) and hopefully move on to immunotherapy or a trial following treatment of brain mets.
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- January 18, 2014 at 5:42 pm
Important to get tested for BRAF (done via FNA or biopsy). To the extent you have a heavy tumor burden (I did) and you are postive for BRAF, the BRAF/MEK inhibitors are the quickest way to get a reduction (when they work) and hopefully move on to immunotherapy or a trial following treatment of brain mets.
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- January 18, 2014 at 5:42 pm
Important to get tested for BRAF (done via FNA or biopsy). To the extent you have a heavy tumor burden (I did) and you are postive for BRAF, the BRAF/MEK inhibitors are the quickest way to get a reduction (when they work) and hopefully move on to immunotherapy or a trial following treatment of brain mets.
-
- January 18, 2014 at 12:55 pm
The doctor told me it was melanoma and that I had brain lesions. Also, that the path report was not complete so maybe there's more? My discharge paper clearly says melanoma. As for the delays, I didn't really tolerate it, I was on the phone every 4 days or so..what was I going to do? If there are a limited number of doctors that take my insurance?
When I told the resident and the nurse at NYU how long I had been waiting for biopsies their eyebrows shot up and thier mouths opened like What! So now I have to wonder how the delay has effected my outcome and how much worse my situation got while waiting.
Thanks for the replies and God bless you all…..I'm a fighter but I'm also a realist..I'll give it all I got.
Hugs to all…..
-
- January 18, 2014 at 11:08 am
I'm sorry to hear about your situation–it reminds me of mine (recurrence after 10 years). I agree that you must, must, must get with a mel specialist. Post your location so folks can make suggestions. Hopefully the brain lesions can be treated with targeted radiation (gamma knife), which is an easy procedure. You should also be tested for the BRAF mutation to determine whether you are eligible for a BRAF inhibitor. You also want to consider the possibility of a trial. Since you are treatment naive, you may be eligible for a PD-1 trial.
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- January 18, 2014 at 7:11 pm
Dear G,
So sorry for the gut punch you are now dealing with. I think Mat has given you some sound advice. Hang in there and pursue answers through a melanoma specialist about exactly what options you have. His tentative plan of Gamma knife or SRS (Stereotactic radiation) on the brain mets then either a BRAF/MEK or even just BRAF treatment (but you must find out if your lesions are BRAF positive) or straight on to an immunotherapy (like anti-PD1, ipi, or even new studies with anti-PDL) might be good options. One thing in your favor is that since you went 10 years before a recurrence your melanoma, it is rather "indolent". Not all melanoma waits around like that. But, it seems, and some research indicates, that patients with those long breaks between melanoma episodes have something going for them..though the researchers and docs are not sure exactly what that is. Hang in there. Let me know if there is something I can help you answer. You can check my blog (just google "chaotically precise") and you can enter treatments or topics in the search bar and see if there is information there that will help you. Not to mention you can search this site for info on treatments as well as the Melanoma International site. You are not alone, even though somedays it really feels like, I know.
Yours, Celeste
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- January 18, 2014 at 7:11 pm
Dear G,
So sorry for the gut punch you are now dealing with. I think Mat has given you some sound advice. Hang in there and pursue answers through a melanoma specialist about exactly what options you have. His tentative plan of Gamma knife or SRS (Stereotactic radiation) on the brain mets then either a BRAF/MEK or even just BRAF treatment (but you must find out if your lesions are BRAF positive) or straight on to an immunotherapy (like anti-PD1, ipi, or even new studies with anti-PDL) might be good options. One thing in your favor is that since you went 10 years before a recurrence your melanoma, it is rather "indolent". Not all melanoma waits around like that. But, it seems, and some research indicates, that patients with those long breaks between melanoma episodes have something going for them..though the researchers and docs are not sure exactly what that is. Hang in there. Let me know if there is something I can help you answer. You can check my blog (just google "chaotically precise") and you can enter treatments or topics in the search bar and see if there is information there that will help you. Not to mention you can search this site for info on treatments as well as the Melanoma International site. You are not alone, even though somedays it really feels like, I know.
Yours, Celeste
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- January 18, 2014 at 7:11 pm
Dear G,
So sorry for the gut punch you are now dealing with. I think Mat has given you some sound advice. Hang in there and pursue answers through a melanoma specialist about exactly what options you have. His tentative plan of Gamma knife or SRS (Stereotactic radiation) on the brain mets then either a BRAF/MEK or even just BRAF treatment (but you must find out if your lesions are BRAF positive) or straight on to an immunotherapy (like anti-PD1, ipi, or even new studies with anti-PDL) might be good options. One thing in your favor is that since you went 10 years before a recurrence your melanoma, it is rather "indolent". Not all melanoma waits around like that. But, it seems, and some research indicates, that patients with those long breaks between melanoma episodes have something going for them..though the researchers and docs are not sure exactly what that is. Hang in there. Let me know if there is something I can help you answer. You can check my blog (just google "chaotically precise") and you can enter treatments or topics in the search bar and see if there is information there that will help you. Not to mention you can search this site for info on treatments as well as the Melanoma International site. You are not alone, even though somedays it really feels like, I know.
Yours, Celeste
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- January 18, 2014 at 8:13 pm
Celeste, I hope you (and the research) are right about the long breaks! Funny (well, not really), no doctor has mentioned that to me–and I've seen some good mel specialists. I read your blog from time to time. I think you do a great service for our little melanoma community–there is life after a Stage IV diagnosis, as evidenced by your experience.
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- January 18, 2014 at 8:13 pm
Celeste, I hope you (and the research) are right about the long breaks! Funny (well, not really), no doctor has mentioned that to me–and I've seen some good mel specialists. I read your blog from time to time. I think you do a great service for our little melanoma community–there is life after a Stage IV diagnosis, as evidenced by your experience.
-
- January 18, 2014 at 8:13 pm
Celeste, I hope you (and the research) are right about the long breaks! Funny (well, not really), no doctor has mentioned that to me–and I've seen some good mel specialists. I read your blog from time to time. I think you do a great service for our little melanoma community–there is life after a Stage IV diagnosis, as evidenced by your experience.
-
- January 18, 2014 at 8:57 pm
Oh, Mat. You are sweet to say that….I guess I feel I should do what little I can to help out my fellow peeps. Yes, it is hard to get docs to talk about things they don't know, can't prove, or don't understand. But, even Weber has agreed that there is such a thing as "indolent" disease…though he doesn't understand it…and agrees that it can be beneficial….as long as it lasts. I've tried to get more info on it and did find one group of researchers working to address it. (I posted about it on April 1, 2012). Anyhow, hang in there and keep me posted on your decisions. Yours, c
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- January 18, 2014 at 8:57 pm
Oh, Mat. You are sweet to say that….I guess I feel I should do what little I can to help out my fellow peeps. Yes, it is hard to get docs to talk about things they don't know, can't prove, or don't understand. But, even Weber has agreed that there is such a thing as "indolent" disease…though he doesn't understand it…and agrees that it can be beneficial….as long as it lasts. I've tried to get more info on it and did find one group of researchers working to address it. (I posted about it on April 1, 2012). Anyhow, hang in there and keep me posted on your decisions. Yours, c
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- January 18, 2014 at 8:57 pm
Oh, Mat. You are sweet to say that….I guess I feel I should do what little I can to help out my fellow peeps. Yes, it is hard to get docs to talk about things they don't know, can't prove, or don't understand. But, even Weber has agreed that there is such a thing as "indolent" disease…though he doesn't understand it…and agrees that it can be beneficial….as long as it lasts. I've tried to get more info on it and did find one group of researchers working to address it. (I posted about it on April 1, 2012). Anyhow, hang in there and keep me posted on your decisions. Yours, c
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- January 19, 2014 at 12:24 pm
Thank you Celeste! I was on the site way back when and it sure has changed a lot!
I appreciate all of you taking the time to give me suggestions.
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- January 19, 2014 at 12:24 pm
Thank you Celeste! I was on the site way back when and it sure has changed a lot!
I appreciate all of you taking the time to give me suggestions.
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- January 19, 2014 at 12:24 pm
Thank you Celeste! I was on the site way back when and it sure has changed a lot!
I appreciate all of you taking the time to give me suggestions.
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- January 18, 2014 at 11:08 pm
I am so sorry you are going through this. Melanoma sucks and only the folks unfortunate enough to be battling it really know what it's like. That is what I like about this forum. I often go through my daily life and think 'geez, these people have no clue what I'm going through.' I find it hard to talk to anyone about this disease, but the folks on this site understand. Hang in there, stay strong, and keep us posted. Everyone on this site cares and will help you out in any way possible.
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- January 18, 2014 at 11:08 pm
I am so sorry you are going through this. Melanoma sucks and only the folks unfortunate enough to be battling it really know what it's like. That is what I like about this forum. I often go through my daily life and think 'geez, these people have no clue what I'm going through.' I find it hard to talk to anyone about this disease, but the folks on this site understand. Hang in there, stay strong, and keep us posted. Everyone on this site cares and will help you out in any way possible.
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- January 18, 2014 at 11:08 pm
I am so sorry you are going through this. Melanoma sucks and only the folks unfortunate enough to be battling it really know what it's like. That is what I like about this forum. I often go through my daily life and think 'geez, these people have no clue what I'm going through.' I find it hard to talk to anyone about this disease, but the folks on this site understand. Hang in there, stay strong, and keep us posted. Everyone on this site cares and will help you out in any way possible.
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