› Forums › General Melanoma Community › Stage IIIa what to do next?
- This topic has 48 replies, 11 voices, and was last updated 8 years, 4 months ago by
Raeofsonshine.
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- January 9, 2017 at 1:36 am
I am 25, had a WLE and SNB, one node had micro-metastasis. Pet scan did not show anything concerning per the doctor. I know I have a few different options now. I can have a complete lymph node dissection (groin) and receive a systemic therpay (doctor said my veins are small and I would need a port) or I could do nothing. I saw Dr. Merrick Ross at MDA and he recommends an aggressive treatment plan. I am a nurse and I work 12 hours shifts on my feet and I fear the surgery will force a career change, which is okay, I just want to be prepared. Any insight, advice or personal stories would be appreciated as I make this decision. I have been reading many of your stories and I hope for the best for all of you!
Thank you, Shawna
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- January 9, 2017 at 4:10 pm
I am also 3a. I had the complete lymph node dissection underarm a total of 21 nodes removed. I am now seeing Dr Amaria at MD Anderson and she suggested no other treaments so far except follow up scans. Did you doctor at MD explain why such an aggessive treatment plan? I know having the lymph node removal could increase your chances of a trail if more mets are found but in my case all were clear so I didn't qualify for any trails.
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- January 10, 2017 at 3:17 am
From my understanding Dr. Ross felt that a total dissection and adjunct therapy would be best as I am so young and I have many years for a possible reoccurrence. And if more positive nodes were identified I would also be a candidate for a clinical trial. How long ago was your surgery for the total dissection, if you don’t mind me asking?
Shawna
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- January 10, 2017 at 3:17 am
From my understanding Dr. Ross felt that a total dissection and adjunct therapy would be best as I am so young and I have many years for a possible reoccurrence. And if more positive nodes were identified I would also be a candidate for a clinical trial. How long ago was your surgery for the total dissection, if you don’t mind me asking?
Shawna
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- January 10, 2017 at 3:17 am
From my understanding Dr. Ross felt that a total dissection and adjunct therapy would be best as I am so young and I have many years for a possible reoccurrence. And if more positive nodes were identified I would also be a candidate for a clinical trial. How long ago was your surgery for the total dissection, if you don’t mind me asking?
Shawna
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- January 9, 2017 at 4:10 pm
I am also 3a. I had the complete lymph node dissection underarm a total of 21 nodes removed. I am now seeing Dr Amaria at MD Anderson and she suggested no other treaments so far except follow up scans. Did you doctor at MD explain why such an aggessive treatment plan? I know having the lymph node removal could increase your chances of a trail if more mets are found but in my case all were clear so I didn't qualify for any trails.
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- January 9, 2017 at 4:10 pm
I am also 3a. I had the complete lymph node dissection underarm a total of 21 nodes removed. I am now seeing Dr Amaria at MD Anderson and she suggested no other treaments so far except follow up scans. Did you doctor at MD explain why such an aggessive treatment plan? I know having the lymph node removal could increase your chances of a trail if more mets are found but in my case all were clear so I didn't qualify for any trails.
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- January 9, 2017 at 4:44 pm
Hi Shawna,
I am the wife of a patient. My hubby had to make very similar decisions just recently. He has had a full groin dissection after micro met was found to one node. Results show no other node involvement from those removed. He was keen to access some adjuvant therapy (drugs to reduce the chance of recurrence) but we don't think he is eligible. We are in the U.K and only way to access for stage 3 is via clinical trials. We were told his tumour burden is too low to be accepted. On the plus side though micro is good. It's all such big decision when your head feels all over the place. For me it felt like I had to get all the info for hubby so he (and I guess we together) could make the 'right' decision. I think I've already learned that with this disease in particular, whilst u need to get all the facts and info from specialists, and become educated, all you can then do is make the best decision that fits with you at the time, based on what you know at that time. Sorry if that doesn't help much. We're new to this too so I'm watching this thread with interest. Hope you're bearing up ok – this whole thing knocks you for six and I've only experienced it as a partner of someone going through it x
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- January 10, 2017 at 3:21 am
Thank you for replying. It is all very new and scary, but reading everyone’s story makes you feel less alone. I have been researching some on my own, but it is overwhelming, and that is why I went to MD Anderson, hoping they could help with the hard decisions. I hope your husband is recovering well!
Shawna -
- January 10, 2017 at 3:21 am
Thank you for replying. It is all very new and scary, but reading everyone’s story makes you feel less alone. I have been researching some on my own, but it is overwhelming, and that is why I went to MD Anderson, hoping they could help with the hard decisions. I hope your husband is recovering well!
Shawna -
- January 10, 2017 at 3:21 am
Thank you for replying. It is all very new and scary, but reading everyone’s story makes you feel less alone. I have been researching some on my own, but it is overwhelming, and that is why I went to MD Anderson, hoping they could help with the hard decisions. I hope your husband is recovering well!
Shawna
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- January 9, 2017 at 4:44 pm
Hi Shawna,
I am the wife of a patient. My hubby had to make very similar decisions just recently. He has had a full groin dissection after micro met was found to one node. Results show no other node involvement from those removed. He was keen to access some adjuvant therapy (drugs to reduce the chance of recurrence) but we don't think he is eligible. We are in the U.K and only way to access for stage 3 is via clinical trials. We were told his tumour burden is too low to be accepted. On the plus side though micro is good. It's all such big decision when your head feels all over the place. For me it felt like I had to get all the info for hubby so he (and I guess we together) could make the 'right' decision. I think I've already learned that with this disease in particular, whilst u need to get all the facts and info from specialists, and become educated, all you can then do is make the best decision that fits with you at the time, based on what you know at that time. Sorry if that doesn't help much. We're new to this too so I'm watching this thread with interest. Hope you're bearing up ok – this whole thing knocks you for six and I've only experienced it as a partner of someone going through it x
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- January 9, 2017 at 4:44 pm
Hi Shawna,
I am the wife of a patient. My hubby had to make very similar decisions just recently. He has had a full groin dissection after micro met was found to one node. Results show no other node involvement from those removed. He was keen to access some adjuvant therapy (drugs to reduce the chance of recurrence) but we don't think he is eligible. We are in the U.K and only way to access for stage 3 is via clinical trials. We were told his tumour burden is too low to be accepted. On the plus side though micro is good. It's all such big decision when your head feels all over the place. For me it felt like I had to get all the info for hubby so he (and I guess we together) could make the 'right' decision. I think I've already learned that with this disease in particular, whilst u need to get all the facts and info from specialists, and become educated, all you can then do is make the best decision that fits with you at the time, based on what you know at that time. Sorry if that doesn't help much. We're new to this too so I'm watching this thread with interest. Hope you're bearing up ok – this whole thing knocks you for six and I've only experienced it as a partner of someone going through it x
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- January 9, 2017 at 7:25 pm
I am going to have PET scan in few hours and groin SLnB tomorrow. So my question is the same, what is next? My understanding was interferon treatment was next? Very keen to hear what is the plan suggested to u? 26 yo, male, Dx-ed mid Nov.
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- January 9, 2017 at 7:25 pm
I am going to have PET scan in few hours and groin SLnB tomorrow. So my question is the same, what is next? My understanding was interferon treatment was next? Very keen to hear what is the plan suggested to u? 26 yo, male, Dx-ed mid Nov.
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- January 9, 2017 at 8:29 pm
Until you know the results of your SLNB you don't know what your next step is… if the SLNB is negative then systemic treatment will not be an option, just regular follow ups and skin checks with your derm.
If your SLNB is positive for mel…
Did you have a doctor tell you Interferon would be next option? A melanoma oncologist is the doctor you will need to see after your SLNB (only if it is positive) to go over your options for treatment. Interferon was used for many years as it was the only option for adjuvant treatment… but does very very little to help the patient other than make them feel like total crap for a year. Yervoy is approved in the adjuvant setting and there are some good trials happening as well with other even better immunotherapy drugs. Watch and wait is also a viable option too.
Wishing you the best in surgery and hoping for negative results!
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- January 9, 2017 at 8:29 pm
Until you know the results of your SLNB you don't know what your next step is… if the SLNB is negative then systemic treatment will not be an option, just regular follow ups and skin checks with your derm.
If your SLNB is positive for mel…
Did you have a doctor tell you Interferon would be next option? A melanoma oncologist is the doctor you will need to see after your SLNB (only if it is positive) to go over your options for treatment. Interferon was used for many years as it was the only option for adjuvant treatment… but does very very little to help the patient other than make them feel like total crap for a year. Yervoy is approved in the adjuvant setting and there are some good trials happening as well with other even better immunotherapy drugs. Watch and wait is also a viable option too.
Wishing you the best in surgery and hoping for negative results!
-
- January 9, 2017 at 8:29 pm
Until you know the results of your SLNB you don't know what your next step is… if the SLNB is negative then systemic treatment will not be an option, just regular follow ups and skin checks with your derm.
If your SLNB is positive for mel…
Did you have a doctor tell you Interferon would be next option? A melanoma oncologist is the doctor you will need to see after your SLNB (only if it is positive) to go over your options for treatment. Interferon was used for many years as it was the only option for adjuvant treatment… but does very very little to help the patient other than make them feel like total crap for a year. Yervoy is approved in the adjuvant setting and there are some good trials happening as well with other even better immunotherapy drugs. Watch and wait is also a viable option too.
Wishing you the best in surgery and hoping for negative results!
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- January 9, 2017 at 11:57 pm
Hello Shawna,
I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear). At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".
After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma. I am completing the last injections this month and all has been relatively straightforward. Very few side efects and wonderful care at Huntsman.
I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.
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- January 9, 2017 at 11:57 pm
Hello Shawna,
I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear). At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".
After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma. I am completing the last injections this month and all has been relatively straightforward. Very few side efects and wonderful care at Huntsman.
I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.
-
- January 9, 2017 at 11:57 pm
Hello Shawna,
I was diagnosed in November 2014 as a 3a with only my sentinal impacted (all other 33 nodes from my eft armpit were clear). At the time, my options were Interferon or to "watch and wait". Statistically, Interferon was just not as option that I was willing to consider and elected to "watch and wait".
After approximately 1 month my oncologist recommended that I participate in a new (at the time) clinical trial. The trial is vaccine based and named Seviprotimut-L by Polynoma. I am completing the last injections this month and all has been relatively straightforward. Very few side efects and wonderful care at Huntsman.
I am not recommending this path, as I am not even certain I am on the active drug or placebo but it most definitely offered an option where I felt that I was able to take a more aggressive approach.
-
- January 9, 2017 at 7:25 pm
I am going to have PET scan in few hours and groin SLnB tomorrow. So my question is the same, what is next? My understanding was interferon treatment was next? Very keen to hear what is the plan suggested to u? 26 yo, male, Dx-ed mid Nov.
-
- January 10, 2017 at 1:28 am
TYou can probably go on a clinical trial: pembro vs ipi or interferon
i was placed on the ipi arm but you might get lucky and receive the pembro (keytruda) instead
i am not sure why the doctor recommends aggressive treatment ( mine did too although he said it was up to me) – either they are worried that it looks aggressive or they think that immunotherapy could really benefit you and has a strong chance of success, you would have to ask the doctor. But i think its a good sign the doctor is being proactive.so i would go for something but do watch side effects and modify treatment accordingly.
good luck mark
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- January 10, 2017 at 1:28 am
TYou can probably go on a clinical trial: pembro vs ipi or interferon
i was placed on the ipi arm but you might get lucky and receive the pembro (keytruda) instead
i am not sure why the doctor recommends aggressive treatment ( mine did too although he said it was up to me) – either they are worried that it looks aggressive or they think that immunotherapy could really benefit you and has a strong chance of success, you would have to ask the doctor. But i think its a good sign the doctor is being proactive.so i would go for something but do watch side effects and modify treatment accordingly.
good luck mark
-
- January 10, 2017 at 1:28 am
TYou can probably go on a clinical trial: pembro vs ipi or interferon
i was placed on the ipi arm but you might get lucky and receive the pembro (keytruda) instead
i am not sure why the doctor recommends aggressive treatment ( mine did too although he said it was up to me) – either they are worried that it looks aggressive or they think that immunotherapy could really benefit you and has a strong chance of success, you would have to ask the doctor. But i think its a good sign the doctor is being proactive.so i would go for something but do watch side effects and modify treatment accordingly.
good luck mark
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- January 10, 2017 at 3:29 am
Mark,
Are you also stage IIIa? The medical oncologist I saw at home in Albuquerque, NM wants me to participate in that trail to receive ipi vs. pembro. I also think that the doctor being proactive is great, but then again my mind wonders and I consider that the doctor is more concerned with having research participants then my actual well-being, at least that is the vibe I got from the appointment. How are you tolerating the ipi? Thanks for your post.
Shawna -
- January 10, 2017 at 3:29 am
Mark,
Are you also stage IIIa? The medical oncologist I saw at home in Albuquerque, NM wants me to participate in that trail to receive ipi vs. pembro. I also think that the doctor being proactive is great, but then again my mind wonders and I consider that the doctor is more concerned with having research participants then my actual well-being, at least that is the vibe I got from the appointment. How are you tolerating the ipi? Thanks for your post.
Shawna -
- January 10, 2017 at 3:29 am
Mark,
Are you also stage IIIa? The medical oncologist I saw at home in Albuquerque, NM wants me to participate in that trail to receive ipi vs. pembro. I also think that the doctor being proactive is great, but then again my mind wonders and I consider that the doctor is more concerned with having research participants then my actual well-being, at least that is the vibe I got from the appointment. How are you tolerating the ipi? Thanks for your post.
Shawna
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- January 10, 2017 at 1:03 pm
Here's a great opinion by Jason Luke from the university of Chicago who trained at Sloan Kettering: http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHTbVVUrKM8
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- January 10, 2017 at 1:03 pm
Here's a great opinion by Jason Luke from the university of Chicago who trained at Sloan Kettering: http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHTbVVUrKM8
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- January 10, 2017 at 1:03 pm
Here's a great opinion by Jason Luke from the university of Chicago who trained at Sloan Kettering: http://melanomainternational.org/2016/12/adjuvant-therapy-decisions/#.WHTbVVUrKM8
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- January 11, 2017 at 9:43 pm
Hi there! I am 43 and was diagnosed 3a in August of 2016. The tumor itself was over 5 mm, nodular, non ulcerrated. The full groin deisection was not fun and honestly given the chance I would not do it again. I was told to go the wait and watch route. I have been scanned twice since (PET and brain MRI) and have skin checks every three months as well. I am shocked at how different each doctor's approach is. Some stage 2 patients are being offered adjuvent therapy and then otherds like myself, are just sent on about their business. And yes I have very good health insurnace. At any rate, chin up0. Don't live in the moment. After the sting of this diagnosis lessons you will be able to get back to feeling like you! I never thought I would and although I am covere din scars, have one swollen leg despite being very active and diet concious, I am happy again. Prayers with you all!
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- January 11, 2017 at 9:43 pm
Hi there! I am 43 and was diagnosed 3a in August of 2016. The tumor itself was over 5 mm, nodular, non ulcerrated. The full groin deisection was not fun and honestly given the chance I would not do it again. I was told to go the wait and watch route. I have been scanned twice since (PET and brain MRI) and have skin checks every three months as well. I am shocked at how different each doctor's approach is. Some stage 2 patients are being offered adjuvent therapy and then otherds like myself, are just sent on about their business. And yes I have very good health insurnace. At any rate, chin up0. Don't live in the moment. After the sting of this diagnosis lessons you will be able to get back to feeling like you! I never thought I would and although I am covere din scars, have one swollen leg despite being very active and diet concious, I am happy again. Prayers with you all!
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- January 11, 2017 at 9:43 pm
Hi there! I am 43 and was diagnosed 3a in August of 2016. The tumor itself was over 5 mm, nodular, non ulcerrated. The full groin deisection was not fun and honestly given the chance I would not do it again. I was told to go the wait and watch route. I have been scanned twice since (PET and brain MRI) and have skin checks every three months as well. I am shocked at how different each doctor's approach is. Some stage 2 patients are being offered adjuvent therapy and then otherds like myself, are just sent on about their business. And yes I have very good health insurnace. At any rate, chin up0. Don't live in the moment. After the sting of this diagnosis lessons you will be able to get back to feeling like you! I never thought I would and although I am covere din scars, have one swollen leg despite being very active and diet concious, I am happy again. Prayers with you all!
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