› Forums › General Melanoma Community › Stage III Treatment Without a Lymph Node Dissection?
- This topic has 60 replies, 13 voices, and was last updated 8 years, 10 months ago by
amelanomajourney.
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- June 3, 2015 at 1:54 am
Today, when I presented sources (N ENG J MED, Cancer Research UK, American Cancer Society, and even Wikipedia with footnotes) claiming that lymph node dissection does not increase survival particularly for melanoma patients, my Dr. Molina-Vega, a general oncologist, ignored them and said to stop reading because it definitely does. He stated that LND is the standard of treatment for StageIIIb melanoma based on the National Comprehensive Cancer Network which he stated is the best source available and that he adheres to it. Throughout our converation he repeated, "Stop reading". He said all ocologists advocated lymph node dissection for Stage III and that if I found one who didn't, to have him call. When he said that my SNB still had two more weeks to heal, I said I could use that time to get a second opinion. I assured him that I wasn't refusing the LND – I just wanted answers other than "trust me". And although I was polite and respectful, he became irate and arrogant and said that there was no way he would now treat me, since I don't trust him.
He exited. I did not get a chance to ask if I had the BRAF gene or how often I will be getting PET scans and brain MRI.
It was 2 months after diagnosis before his staff would give me an appointment. He never offered choices. Before the SNB, he said the chances of me having melanoma was 5%. That is for thin lesions – mine was intermediate. He had me sign papers authorizing his nurse practitioner to act on his behalf. At the May 18 SNB follow-up she balked at telling me I had a positive lymph node.She said I was Stage IIIa N1, the lowest Stage III, and that my next step was chemo. Today, June 2, I learned form Dr. Molina-Vega, that I am really Stage IIIb N2, a huge difference in terms of survival. She did not notice the extracapsular extension on the pathology report. Chemo was again offered as a possibilitty.
Is anyone out there getting treatment without a lymph node dissection?
I am scheduling an appointment with the VA in Tampa. A nurse in oncology said that they may be able to send me to Moffitt for a consultation.
- Replies
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- June 3, 2015 at 4:35 am
Dr. Molina-Vega sounds like a complete ass and if I were you I would ask for copies of all of your records, check your BRAF status, and find a Melanoma Specialist ASAP. Going to a general oncologist for someone with melanoma can be hit and miss and if I were you I'd count my lucky stars that Dr. Molina-Vega showed you the kind of doctor he is now, rather than later. – He simply doesn't keep up on the latest research and is egomaniac who cannot be trusted to treat you or anyone that second guesses him.
The VA may not offer any better choices for you or be able to refer you to someone. So, check into clinical trials near you or even out of state if you can swing it. And even if you have to pay out of pocket find a melanoma specialist to consult with who understand this disease and finally check out the ASCO website to see what some of the newest research shows too. You can find it here: http://am.asco.org
And I'd share your experience with Dr. Molina-Vega on Healthgrades, Vitals and Google+. Others need to know what kind of doctor he is.
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- June 3, 2015 at 4:35 am
Dr. Molina-Vega sounds like a complete ass and if I were you I would ask for copies of all of your records, check your BRAF status, and find a Melanoma Specialist ASAP. Going to a general oncologist for someone with melanoma can be hit and miss and if I were you I'd count my lucky stars that Dr. Molina-Vega showed you the kind of doctor he is now, rather than later. – He simply doesn't keep up on the latest research and is egomaniac who cannot be trusted to treat you or anyone that second guesses him.
The VA may not offer any better choices for you or be able to refer you to someone. So, check into clinical trials near you or even out of state if you can swing it. And even if you have to pay out of pocket find a melanoma specialist to consult with who understand this disease and finally check out the ASCO website to see what some of the newest research shows too. You can find it here: http://am.asco.org
And I'd share your experience with Dr. Molina-Vega on Healthgrades, Vitals and Google+. Others need to know what kind of doctor he is.
-
- June 3, 2015 at 4:35 am
Dr. Molina-Vega sounds like a complete ass and if I were you I would ask for copies of all of your records, check your BRAF status, and find a Melanoma Specialist ASAP. Going to a general oncologist for someone with melanoma can be hit and miss and if I were you I'd count my lucky stars that Dr. Molina-Vega showed you the kind of doctor he is now, rather than later. – He simply doesn't keep up on the latest research and is egomaniac who cannot be trusted to treat you or anyone that second guesses him.
The VA may not offer any better choices for you or be able to refer you to someone. So, check into clinical trials near you or even out of state if you can swing it. And even if you have to pay out of pocket find a melanoma specialist to consult with who understand this disease and finally check out the ASCO website to see what some of the newest research shows too. You can find it here: http://am.asco.org
And I'd share your experience with Dr. Molina-Vega on Healthgrades, Vitals and Google+. Others need to know what kind of doctor he is.
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- June 3, 2015 at 5:24 am
Sack the doctor and go to a melanoma centre.
The standard treatment for your diagnosis is a CLND.
I think according to the research the CLND still offers the best OS statistics based on the current therapies available.
I think that is probably going to change with some of the new immuno therapies and some of the viro therapies and intralesional therapies now coming on board but it is still some years away yet.
I guess there are people who for whatever reason couldnt do the operation then it would be the immuno therapy drugs which are promising but still statistically not as effect as the surgery.
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- June 3, 2015 at 5:24 am
Sack the doctor and go to a melanoma centre.
The standard treatment for your diagnosis is a CLND.
I think according to the research the CLND still offers the best OS statistics based on the current therapies available.
I think that is probably going to change with some of the new immuno therapies and some of the viro therapies and intralesional therapies now coming on board but it is still some years away yet.
I guess there are people who for whatever reason couldnt do the operation then it would be the immuno therapy drugs which are promising but still statistically not as effect as the surgery.
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- June 3, 2015 at 12:10 pm
Thank you for your reply.
I am still struggling with abbreviations and I am rather dense. I googled CLND to see what the C means – "Complete". I had a harder time googling OS – "Overall Survival"
This is the first time I have ever cut and pasted – it was a struggle. This link was forwarded to me and is the latest (started 1994 ended 2014) in determining 10 year OS for melanoma patients who had CLND vs those who did not. For intermediate lesions like mine it was 71% vs 65% .The 6% difference seems modest to me for risking complications of CLND and I do not understand how it translates into their headline claim of a 44% OS improval. Moreover, depending on margins for error, a CLND could hypothetically worsen your OS due to a weakened immune system by lowering quality of life due to complications and stress.
Cancer Research UK, the American Cancer Society, and CLND SLNB on Wikipedia all currently state that there is no change in OS. "In addition, there is no compelling evidence that patients (referring to melanoma only) who have had a full node dissection as a result of a positive sentinel lymph node result have improved survival compared to those who do not have a full dissection until later in their disease, when lymph nodes can be felt by a physician." Other melanoma websites simply state that SLNB and CLND is standard melanoma treatment without fully elaborating why.
But here comes the clincher. I have been obsessively reading everything I can about melanoma everyday for hours at a time. Several days ago while perusing a UK melananoma research website, I clicked on a recent press release about a critique of this very study. They found it flawed and using this study's very own data, they deduced that there was indeed no change in OS. Could it be that a billion dollar industry is trying to justify and continue to harvest billions? I hope not… In Europe where health care is subsidized and not for profit, standards for melanoma treatment in many hospitals do not include SLNB or CLND.
Forgive me. I have spent hours trying to ressurect this press release and for the life of me cannot find it again. If anyone else out there has found it, could you please forward the link.
Sorry for being such a dummy.
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- June 3, 2015 at 12:58 pm
Here are the links to the articles:
http://www.sfmn.org/images/iconesGroupes/oncolo/Morton-2014_pub28-02-2014.pdf
Yes, treatment is very different in Europe…not always for the better, but not always worse. Everyone has to make the decision about what is best for them personally. Balch and Faries are experts in their work. I wish you my best. c
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- June 3, 2015 at 12:58 pm
Here are the links to the articles:
http://www.sfmn.org/images/iconesGroupes/oncolo/Morton-2014_pub28-02-2014.pdf
Yes, treatment is very different in Europe…not always for the better, but not always worse. Everyone has to make the decision about what is best for them personally. Balch and Faries are experts in their work. I wish you my best. c
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- June 3, 2015 at 12:58 pm
Here are the links to the articles:
http://www.sfmn.org/images/iconesGroupes/oncolo/Morton-2014_pub28-02-2014.pdf
Yes, treatment is very different in Europe…not always for the better, but not always worse. Everyone has to make the decision about what is best for them personally. Balch and Faries are experts in their work. I wish you my best. c
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- June 3, 2015 at 1:27 pm
Thank you for the links expaining and supporting the CLND study in question. I wish I could find the UK article I read disclaiming it. I wish I could get feedback from anyone who is currently undergoing treatment without CLND. This may all be academic if CLND is the undisputed standard of care in America – if the specialists at Moffitt say jump, I will reply, "How high?". If they give me a choice… I still don't know… maybe I will choose what makes Julie feel better.
Tony
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- June 3, 2015 at 1:27 pm
Thank you for the links expaining and supporting the CLND study in question. I wish I could find the UK article I read disclaiming it. I wish I could get feedback from anyone who is currently undergoing treatment without CLND. This may all be academic if CLND is the undisputed standard of care in America – if the specialists at Moffitt say jump, I will reply, "How high?". If they give me a choice… I still don't know… maybe I will choose what makes Julie feel better.
Tony
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- June 3, 2015 at 1:27 pm
Thank you for the links expaining and supporting the CLND study in question. I wish I could find the UK article I read disclaiming it. I wish I could get feedback from anyone who is currently undergoing treatment without CLND. This may all be academic if CLND is the undisputed standard of care in America – if the specialists at Moffitt say jump, I will reply, "How high?". If they give me a choice… I still don't know… maybe I will choose what makes Julie feel better.
Tony
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- June 3, 2015 at 12:10 pm
Thank you for your reply.
I am still struggling with abbreviations and I am rather dense. I googled CLND to see what the C means – "Complete". I had a harder time googling OS – "Overall Survival"
This is the first time I have ever cut and pasted – it was a struggle. This link was forwarded to me and is the latest (started 1994 ended 2014) in determining 10 year OS for melanoma patients who had CLND vs those who did not. For intermediate lesions like mine it was 71% vs 65% .The 6% difference seems modest to me for risking complications of CLND and I do not understand how it translates into their headline claim of a 44% OS improval. Moreover, depending on margins for error, a CLND could hypothetically worsen your OS due to a weakened immune system by lowering quality of life due to complications and stress.
Cancer Research UK, the American Cancer Society, and CLND SLNB on Wikipedia all currently state that there is no change in OS. "In addition, there is no compelling evidence that patients (referring to melanoma only) who have had a full node dissection as a result of a positive sentinel lymph node result have improved survival compared to those who do not have a full dissection until later in their disease, when lymph nodes can be felt by a physician." Other melanoma websites simply state that SLNB and CLND is standard melanoma treatment without fully elaborating why.
But here comes the clincher. I have been obsessively reading everything I can about melanoma everyday for hours at a time. Several days ago while perusing a UK melananoma research website, I clicked on a recent press release about a critique of this very study. They found it flawed and using this study's very own data, they deduced that there was indeed no change in OS. Could it be that a billion dollar industry is trying to justify and continue to harvest billions? I hope not… In Europe where health care is subsidized and not for profit, standards for melanoma treatment in many hospitals do not include SLNB or CLND.
Forgive me. I have spent hours trying to ressurect this press release and for the life of me cannot find it again. If anyone else out there has found it, could you please forward the link.
Sorry for being such a dummy.
-
- June 3, 2015 at 12:10 pm
Thank you for your reply.
I am still struggling with abbreviations and I am rather dense. I googled CLND to see what the C means – "Complete". I had a harder time googling OS – "Overall Survival"
This is the first time I have ever cut and pasted – it was a struggle. This link was forwarded to me and is the latest (started 1994 ended 2014) in determining 10 year OS for melanoma patients who had CLND vs those who did not. For intermediate lesions like mine it was 71% vs 65% .The 6% difference seems modest to me for risking complications of CLND and I do not understand how it translates into their headline claim of a 44% OS improval. Moreover, depending on margins for error, a CLND could hypothetically worsen your OS due to a weakened immune system by lowering quality of life due to complications and stress.
Cancer Research UK, the American Cancer Society, and CLND SLNB on Wikipedia all currently state that there is no change in OS. "In addition, there is no compelling evidence that patients (referring to melanoma only) who have had a full node dissection as a result of a positive sentinel lymph node result have improved survival compared to those who do not have a full dissection until later in their disease, when lymph nodes can be felt by a physician." Other melanoma websites simply state that SLNB and CLND is standard melanoma treatment without fully elaborating why.
But here comes the clincher. I have been obsessively reading everything I can about melanoma everyday for hours at a time. Several days ago while perusing a UK melananoma research website, I clicked on a recent press release about a critique of this very study. They found it flawed and using this study's very own data, they deduced that there was indeed no change in OS. Could it be that a billion dollar industry is trying to justify and continue to harvest billions? I hope not… In Europe where health care is subsidized and not for profit, standards for melanoma treatment in many hospitals do not include SLNB or CLND.
Forgive me. I have spent hours trying to ressurect this press release and for the life of me cannot find it again. If anyone else out there has found it, could you please forward the link.
Sorry for being such a dummy.
-
- June 3, 2015 at 5:24 am
Sack the doctor and go to a melanoma centre.
The standard treatment for your diagnosis is a CLND.
I think according to the research the CLND still offers the best OS statistics based on the current therapies available.
I think that is probably going to change with some of the new immuno therapies and some of the viro therapies and intralesional therapies now coming on board but it is still some years away yet.
I guess there are people who for whatever reason couldnt do the operation then it would be the immuno therapy drugs which are promising but still statistically not as effect as the surgery.
-
- June 3, 2015 at 11:33 am
Are you able to get an appointment with dr weber at mofffitt in Tampa? Not just any moffit dr but dr weber. Just call moffit yourself and ask if he is taking new patients and if he is voila setup the appointment. The doc visit might be an out of pocket expense of a few hundred dollars depending on your insurance but I believe it would be worth it. The huge costs of treatment would be covered by a trial so you would only have to pay for travel, lodging and food. Probably the yervoy vs pd1 trial for stage 3 folks but he would know better than I.
Artie
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- June 3, 2015 at 12:38 pm
Thanks again Artie.
I called Moffitt – the cost for an appointment with a melanoma specialist is $1230. CarePlus has extremely limited providers – no melanoma specialists – hence its low cost. It does not cover anything outside its network. Dr. Molina-Vega, who dumped me, said I still have 2 more weeks of healing to do from my May 7 SLNB before I can have the proposed CLND. He also hinted that I could not get into a clinical trial without a CLND because that is the standard. An oncology nurse at the Tampa VA said that the VA would pay for a consultation with Moffitt – it is done frequently. So as soon as I finish typing this, I am following a friend's advice on how to expedite my first VA appointment. I will insist on Dr. Weber. Thank you.
Tony
-
- June 3, 2015 at 12:38 pm
Thanks again Artie.
I called Moffitt – the cost for an appointment with a melanoma specialist is $1230. CarePlus has extremely limited providers – no melanoma specialists – hence its low cost. It does not cover anything outside its network. Dr. Molina-Vega, who dumped me, said I still have 2 more weeks of healing to do from my May 7 SLNB before I can have the proposed CLND. He also hinted that I could not get into a clinical trial without a CLND because that is the standard. An oncology nurse at the Tampa VA said that the VA would pay for a consultation with Moffitt – it is done frequently. So as soon as I finish typing this, I am following a friend's advice on how to expedite my first VA appointment. I will insist on Dr. Weber. Thank you.
Tony
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- June 3, 2015 at 1:58 pm
Hello,
My husband never had a CLND and he participated in a clinical trial. He was Stage IV with lesions in the liver, lungs and an inoperable one on the cervical spine C-1 C2 area. He started in a clinical trial in March 2011 for Ipi 10 mg/kg and GMCSF. He became NED and went off of the trial and has been NED for over 2 1/2 years now. If you wish to read more about his travels with this disease then you can read about it on his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- June 3, 2015 at 1:58 pm
Hello,
My husband never had a CLND and he participated in a clinical trial. He was Stage IV with lesions in the liver, lungs and an inoperable one on the cervical spine C-1 C2 area. He started in a clinical trial in March 2011 for Ipi 10 mg/kg and GMCSF. He became NED and went off of the trial and has been NED for over 2 1/2 years now. If you wish to read more about his travels with this disease then you can read about it on his profile.
Judy (loving wife of Gene Stage IV and now NED)
-
- June 3, 2015 at 1:58 pm
Hello,
My husband never had a CLND and he participated in a clinical trial. He was Stage IV with lesions in the liver, lungs and an inoperable one on the cervical spine C-1 C2 area. He started in a clinical trial in March 2011 for Ipi 10 mg/kg and GMCSF. He became NED and went off of the trial and has been NED for over 2 1/2 years now. If you wish to read more about his travels with this disease then you can read about it on his profile.
Judy (loving wife of Gene Stage IV and now NED)
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- June 3, 2015 at 5:22 pm
What were the results of the SNB? Had the melanoma moved to the lymph nodes from the original tumor? If no, you should be done. If yes, then the standard procedure is lymph node removal in the next layer near the lymph nodes taken in the SNB.
But, this is your choice, your body, etc. One thing to keep in mind, is the statistics your quoting are very old. For example, the survival rate of the first 10 years of the staticstics you are quoting are much different than the last 5 years because of Yervoy and now other drugs that are extending even advanced melanoma beyond anything possible 2 or 3 years ago
I understand medical insurance and the lack of it can have effects on the care you can receive, but, keep trying for ways to see a specialist in melanoma, it's worth it
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- June 3, 2015 at 5:22 pm
What were the results of the SNB? Had the melanoma moved to the lymph nodes from the original tumor? If no, you should be done. If yes, then the standard procedure is lymph node removal in the next layer near the lymph nodes taken in the SNB.
But, this is your choice, your body, etc. One thing to keep in mind, is the statistics your quoting are very old. For example, the survival rate of the first 10 years of the staticstics you are quoting are much different than the last 5 years because of Yervoy and now other drugs that are extending even advanced melanoma beyond anything possible 2 or 3 years ago
I understand medical insurance and the lack of it can have effects on the care you can receive, but, keep trying for ways to see a specialist in melanoma, it's worth it
-
- June 3, 2015 at 5:22 pm
What were the results of the SNB? Had the melanoma moved to the lymph nodes from the original tumor? If no, you should be done. If yes, then the standard procedure is lymph node removal in the next layer near the lymph nodes taken in the SNB.
But, this is your choice, your body, etc. One thing to keep in mind, is the statistics your quoting are very old. For example, the survival rate of the first 10 years of the staticstics you are quoting are much different than the last 5 years because of Yervoy and now other drugs that are extending even advanced melanoma beyond anything possible 2 or 3 years ago
I understand medical insurance and the lack of it can have effects on the care you can receive, but, keep trying for ways to see a specialist in melanoma, it's worth it
-
- June 3, 2015 at 10:50 pm
One of my two lymph nodes tested positive with extracapsular extension – the melanoma had broken through the node wall and was growing outside it, usually a sign of rapid growth.
Indeed the choice should be mine and not the edict I got from Dr. Molina-Vega along with his order to stop reading.
The pro-CLND study I quoted was completed March 2014 and has already been refuted in a recent press release. Even if it is valid – is a sketchy survival improvement from 65% to 71% for my Stage III worth the risk? If I receive a miracle drug in a clinical trial, wouldn't that also cure the possible melanoma in my lymph node basin? In related studies and cases it has. Of course these are the questions I will ask of a melanoma specialist, hopefully soon.
I have seen this in many posts – For positive SLN as you stated, the standard American procedure is CLND. Standard American Stage III procedure is interferon, radiation, and chemo, all of which adversely affect quality of life with no increase in survival. You have to wait to reach Stage 4 before you can take the miracle drugs. Or volunteer for a clinical trial. So far that seems like the most desirable path.
I registered with the VA in Tampa today. Moffitt is right across the street. Tommorow I have an appointment with my new PCP who will send me to oncology, who may send me to Moffitt.
-
- June 3, 2015 at 10:50 pm
One of my two lymph nodes tested positive with extracapsular extension – the melanoma had broken through the node wall and was growing outside it, usually a sign of rapid growth.
Indeed the choice should be mine and not the edict I got from Dr. Molina-Vega along with his order to stop reading.
The pro-CLND study I quoted was completed March 2014 and has already been refuted in a recent press release. Even if it is valid – is a sketchy survival improvement from 65% to 71% for my Stage III worth the risk? If I receive a miracle drug in a clinical trial, wouldn't that also cure the possible melanoma in my lymph node basin? In related studies and cases it has. Of course these are the questions I will ask of a melanoma specialist, hopefully soon.
I have seen this in many posts – For positive SLN as you stated, the standard American procedure is CLND. Standard American Stage III procedure is interferon, radiation, and chemo, all of which adversely affect quality of life with no increase in survival. You have to wait to reach Stage 4 before you can take the miracle drugs. Or volunteer for a clinical trial. So far that seems like the most desirable path.
I registered with the VA in Tampa today. Moffitt is right across the street. Tommorow I have an appointment with my new PCP who will send me to oncology, who may send me to Moffitt.
-
- June 4, 2015 at 1:32 am
You may get lucky with the VA. Where I live, it is near a cancer center and cancer center docs do rounds at the VA, too. My Dad saw the main melanoma surgical oncologist from our cancer center while at the VA. For his lung cancer, he was sent to the cancer center for a new type of treatment not done at the VA. I realize thAt doesn't always happen but it never hurts to ask.
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- June 4, 2015 at 1:32 am
You may get lucky with the VA. Where I live, it is near a cancer center and cancer center docs do rounds at the VA, too. My Dad saw the main melanoma surgical oncologist from our cancer center while at the VA. For his lung cancer, he was sent to the cancer center for a new type of treatment not done at the VA. I realize thAt doesn't always happen but it never hurts to ask.
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- June 4, 2015 at 1:32 am
You may get lucky with the VA. Where I live, it is near a cancer center and cancer center docs do rounds at the VA, too. My Dad saw the main melanoma surgical oncologist from our cancer center while at the VA. For his lung cancer, he was sent to the cancer center for a new type of treatment not done at the VA. I realize thAt doesn't always happen but it never hurts to ask.
-
- June 3, 2015 at 10:50 pm
One of my two lymph nodes tested positive with extracapsular extension – the melanoma had broken through the node wall and was growing outside it, usually a sign of rapid growth.
Indeed the choice should be mine and not the edict I got from Dr. Molina-Vega along with his order to stop reading.
The pro-CLND study I quoted was completed March 2014 and has already been refuted in a recent press release. Even if it is valid – is a sketchy survival improvement from 65% to 71% for my Stage III worth the risk? If I receive a miracle drug in a clinical trial, wouldn't that also cure the possible melanoma in my lymph node basin? In related studies and cases it has. Of course these are the questions I will ask of a melanoma specialist, hopefully soon.
I have seen this in many posts – For positive SLN as you stated, the standard American procedure is CLND. Standard American Stage III procedure is interferon, radiation, and chemo, all of which adversely affect quality of life with no increase in survival. You have to wait to reach Stage 4 before you can take the miracle drugs. Or volunteer for a clinical trial. So far that seems like the most desirable path.
I registered with the VA in Tampa today. Moffitt is right across the street. Tommorow I have an appointment with my new PCP who will send me to oncology, who may send me to Moffitt.
-
- June 3, 2015 at 11:06 pm
Thanks for the feedback. It was 2 months after stage 2 diagnosis before I could get an appointment. My sintinel node biopsy was May 7, a day after yours, and Dr. Molina-Vega told me it would be 2 weeks before he could get the results. My follow-up appointment was with his nurse practitioner on May 18 because he was not available until June 2, at which time he said I needed 2 more weeks before he could do the complete node dissection. Dr. Molina-Vega – what a rare find…
Thank you for the valuable feedback – I am pretty fit so I hope if I have one that I will have no problems post-op either.
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- June 3, 2015 at 11:06 pm
Thanks for the feedback. It was 2 months after stage 2 diagnosis before I could get an appointment. My sintinel node biopsy was May 7, a day after yours, and Dr. Molina-Vega told me it would be 2 weeks before he could get the results. My follow-up appointment was with his nurse practitioner on May 18 because he was not available until June 2, at which time he said I needed 2 more weeks before he could do the complete node dissection. Dr. Molina-Vega – what a rare find…
Thank you for the valuable feedback – I am pretty fit so I hope if I have one that I will have no problems post-op either.
-
- June 3, 2015 at 11:06 pm
Thanks for the feedback. It was 2 months after stage 2 diagnosis before I could get an appointment. My sintinel node biopsy was May 7, a day after yours, and Dr. Molina-Vega told me it would be 2 weeks before he could get the results. My follow-up appointment was with his nurse practitioner on May 18 because he was not available until June 2, at which time he said I needed 2 more weeks before he could do the complete node dissection. Dr. Molina-Vega – what a rare find…
Thank you for the valuable feedback – I am pretty fit so I hope if I have one that I will have no problems post-op either.
-
- June 3, 2015 at 12:38 pm
Thanks again Artie.
I called Moffitt – the cost for an appointment with a melanoma specialist is $1230. CarePlus has extremely limited providers – no melanoma specialists – hence its low cost. It does not cover anything outside its network. Dr. Molina-Vega, who dumped me, said I still have 2 more weeks of healing to do from my May 7 SLNB before I can have the proposed CLND. He also hinted that I could not get into a clinical trial without a CLND because that is the standard. An oncology nurse at the Tampa VA said that the VA would pay for a consultation with Moffitt – it is done frequently. So as soon as I finish typing this, I am following a friend's advice on how to expedite my first VA appointment. I will insist on Dr. Weber. Thank you.
Tony
-
- June 3, 2015 at 11:33 am
Are you able to get an appointment with dr weber at mofffitt in Tampa? Not just any moffit dr but dr weber. Just call moffit yourself and ask if he is taking new patients and if he is voila setup the appointment. The doc visit might be an out of pocket expense of a few hundred dollars depending on your insurance but I believe it would be worth it. The huge costs of treatment would be covered by a trial so you would only have to pay for travel, lodging and food. Probably the yervoy vs pd1 trial for stage 3 folks but he would know better than I.
Artie
-
- June 3, 2015 at 11:33 am
Are you able to get an appointment with dr weber at mofffitt in Tampa? Not just any moffit dr but dr weber. Just call moffit yourself and ask if he is taking new patients and if he is voila setup the appointment. The doc visit might be an out of pocket expense of a few hundred dollars depending on your insurance but I believe it would be worth it. The huge costs of treatment would be covered by a trial so you would only have to pay for travel, lodging and food. Probably the yervoy vs pd1 trial for stage 3 folks but he would know better than I.
Artie
-
- June 4, 2015 at 12:17 am
Hi Tmelanio, stage 3b oh boy what to do. I was there in 2012 in Ottawa Canada, all the early talks were with the surgeon who at the time seemed very experienced and new what she was doing. Of all my Melanoma experiences this is the one I regret the most, I opted for the CLND after having two positive nodes from the SNB. Fast forward to last weekend at ASCO in Chicago and the Germany research showing no improvement in survival for CLND over observation with scaning. The land scape has been changing very quickly in Melanoma and keeping up with all the new research and drugs is no easy job. Who to trust? What is the right choice? I am coming up on 2 years stage 4 and I am in a clincial trial of Ipi and Nivo combined or seperate. Asking questions is important but make sure it is to the right kind of person. Find a Melanoma specialist, and make sure you are comfortable with them. I learn something every time I see my Oncologist and I have been luck to develop a relationship that allows for back and forth discussions. When I read your post I paused on the part where they were talking to you about Chemo as the next step. This to me is a red flag and run don't walk to get an appointment with a Melanoma specialist. Wishing you the best and keep asking questions? Ed
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- June 8, 2015 at 9:35 pm
I have a link up to the ASCO presentation in my blog, such a rapidly changing landscape for Stage 3 melanoma.
It is a balance at this point – are our North American ultrasound techs experienced enough to follow lymph node surveillance like they do in Germany? If it comes back, would you regret not having the procedure?
Would your quality of life be higher without the procedure? Do you have access to a good melanoma doctor who advocates for current treatments and would be able to quickly get you treatment should you progress to stage 4?
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- June 8, 2015 at 9:35 pm
I have a link up to the ASCO presentation in my blog, such a rapidly changing landscape for Stage 3 melanoma.
It is a balance at this point – are our North American ultrasound techs experienced enough to follow lymph node surveillance like they do in Germany? If it comes back, would you regret not having the procedure?
Would your quality of life be higher without the procedure? Do you have access to a good melanoma doctor who advocates for current treatments and would be able to quickly get you treatment should you progress to stage 4?
-
- June 8, 2015 at 9:35 pm
I have a link up to the ASCO presentation in my blog, such a rapidly changing landscape for Stage 3 melanoma.
It is a balance at this point – are our North American ultrasound techs experienced enough to follow lymph node surveillance like they do in Germany? If it comes back, would you regret not having the procedure?
Would your quality of life be higher without the procedure? Do you have access to a good melanoma doctor who advocates for current treatments and would be able to quickly get you treatment should you progress to stage 4?
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- June 4, 2015 at 12:17 am
Hi Tmelanio, stage 3b oh boy what to do. I was there in 2012 in Ottawa Canada, all the early talks were with the surgeon who at the time seemed very experienced and new what she was doing. Of all my Melanoma experiences this is the one I regret the most, I opted for the CLND after having two positive nodes from the SNB. Fast forward to last weekend at ASCO in Chicago and the Germany research showing no improvement in survival for CLND over observation with scaning. The land scape has been changing very quickly in Melanoma and keeping up with all the new research and drugs is no easy job. Who to trust? What is the right choice? I am coming up on 2 years stage 4 and I am in a clincial trial of Ipi and Nivo combined or seperate. Asking questions is important but make sure it is to the right kind of person. Find a Melanoma specialist, and make sure you are comfortable with them. I learn something every time I see my Oncologist and I have been luck to develop a relationship that allows for back and forth discussions. When I read your post I paused on the part where they were talking to you about Chemo as the next step. This to me is a red flag and run don't walk to get an appointment with a Melanoma specialist. Wishing you the best and keep asking questions? Ed
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- June 4, 2015 at 12:17 am
Hi Tmelanio, stage 3b oh boy what to do. I was there in 2012 in Ottawa Canada, all the early talks were with the surgeon who at the time seemed very experienced and new what she was doing. Of all my Melanoma experiences this is the one I regret the most, I opted for the CLND after having two positive nodes from the SNB. Fast forward to last weekend at ASCO in Chicago and the Germany research showing no improvement in survival for CLND over observation with scaning. The land scape has been changing very quickly in Melanoma and keeping up with all the new research and drugs is no easy job. Who to trust? What is the right choice? I am coming up on 2 years stage 4 and I am in a clincial trial of Ipi and Nivo combined or seperate. Asking questions is important but make sure it is to the right kind of person. Find a Melanoma specialist, and make sure you are comfortable with them. I learn something every time I see my Oncologist and I have been luck to develop a relationship that allows for back and forth discussions. When I read your post I paused on the part where they were talking to you about Chemo as the next step. This to me is a red flag and run don't walk to get an appointment with a Melanoma specialist. Wishing you the best and keep asking questions? Ed
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- June 4, 2015 at 2:35 am
PV10 or the Rose Bengal intralesional therapy might be an option as that can be injected to the area.
Results have been really good from this therapy and it is very low toxicity so if I was you I would see if you could qualify for this in lieu of getting the CLND.
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- June 4, 2015 at 2:35 am
PV10 or the Rose Bengal intralesional therapy might be an option as that can be injected to the area.
Results have been really good from this therapy and it is very low toxicity so if I was you I would see if you could qualify for this in lieu of getting the CLND.
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- June 4, 2015 at 2:35 am
PV10 or the Rose Bengal intralesional therapy might be an option as that can be injected to the area.
Results have been really good from this therapy and it is very low toxicity so if I was you I would see if you could qualify for this in lieu of getting the CLND.
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- June 4, 2015 at 3:53 am
Hi Tony,
I am very happy that you are going to pursue seeing a melanoma specialist. Your ex-oncologist should have a pile of skulls outside his office, one for each patient whose life he has cut short because of his failure to stay current.
I suspect that choosing whether or not to have a CLND in your case is not going to be a simple decision. In my case, where I had micrometastisis in one lymph node only, I chose not to have one. And as you know results are coming in that show it does not have much of an effect on outcome.
However in your case, where the melanoma has escaped the node, perhaps the CLND is something to consider. You will always be stage 3 now, but what you don't want to do is advance to stage 4. That happens when melanoma gets into your blood. So if you have other nodes that have an extracapsular extension my thinking would be to remove them before the exposed melanoma cells escape.
If it were me, I would be having this type of discussion with my melanoma oncologist.
I wish you the best of luck – Paul.
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- June 4, 2015 at 3:53 am
Hi Tony,
I am very happy that you are going to pursue seeing a melanoma specialist. Your ex-oncologist should have a pile of skulls outside his office, one for each patient whose life he has cut short because of his failure to stay current.
I suspect that choosing whether or not to have a CLND in your case is not going to be a simple decision. In my case, where I had micrometastisis in one lymph node only, I chose not to have one. And as you know results are coming in that show it does not have much of an effect on outcome.
However in your case, where the melanoma has escaped the node, perhaps the CLND is something to consider. You will always be stage 3 now, but what you don't want to do is advance to stage 4. That happens when melanoma gets into your blood. So if you have other nodes that have an extracapsular extension my thinking would be to remove them before the exposed melanoma cells escape.
If it were me, I would be having this type of discussion with my melanoma oncologist.
I wish you the best of luck – Paul.
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- June 4, 2015 at 3:53 am
Hi Tony,
I am very happy that you are going to pursue seeing a melanoma specialist. Your ex-oncologist should have a pile of skulls outside his office, one for each patient whose life he has cut short because of his failure to stay current.
I suspect that choosing whether or not to have a CLND in your case is not going to be a simple decision. In my case, where I had micrometastisis in one lymph node only, I chose not to have one. And as you know results are coming in that show it does not have much of an effect on outcome.
However in your case, where the melanoma has escaped the node, perhaps the CLND is something to consider. You will always be stage 3 now, but what you don't want to do is advance to stage 4. That happens when melanoma gets into your blood. So if you have other nodes that have an extracapsular extension my thinking would be to remove them before the exposed melanoma cells escape.
If it were me, I would be having this type of discussion with my melanoma oncologist.
I wish you the best of luck – Paul.
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