› Forums › General Melanoma Community › Terrified!!!!!
- This topic has 30 replies, 6 voices, and was last updated 9 years, 8 months ago by
SarahW.
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- July 31, 2014 at 8:08 pm
Hi! Well- for the past few months I was posting as stage 1b- But my surgeon just called and said they sent my lymph node to another pathologist who found 1 microscopic melanoma cell. I guess from here I get all other nodes removed will take interferon. I am terrified! I have a 6 month old baby and am afraid I won't see her turn 5. Is there hope???? Please tell me stage 3a could survive.
- Replies
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- July 31, 2014 at 8:14 pm
I guess I should say I'm 3a as Long as no other nodes have any cells. I'm praying not since the sln only had 1 microscopic cell.
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- July 31, 2014 at 8:14 pm
I guess I should say I'm 3a as Long as no other nodes have any cells. I'm praying not since the sln only had 1 microscopic cell.
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- July 31, 2014 at 8:31 pm
Hi! regret the news, but you have to be quiet.
My husband is the 3A stage since July 2012, also with lymph node micrometastasis in Centinella node . My husband made pegylated interferon since october 2012.
Pegylated interferon therapy is 2 years is an adjunct treatment (preventive).
In addition he has scans every 6 months (PET or CT), and you should not expose yourself to the sun.
The future is uncertain but now there are many medicines that years ago there was.
regards
Gaby
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- July 31, 2014 at 8:31 pm
Hi! regret the news, but you have to be quiet.
My husband is the 3A stage since July 2012, also with lymph node micrometastasis in Centinella node . My husband made pegylated interferon since october 2012.
Pegylated interferon therapy is 2 years is an adjunct treatment (preventive).
In addition he has scans every 6 months (PET or CT), and you should not expose yourself to the sun.
The future is uncertain but now there are many medicines that years ago there was.
regards
Gaby
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- July 31, 2014 at 8:31 pm
Hi! regret the news, but you have to be quiet.
My husband is the 3A stage since July 2012, also with lymph node micrometastasis in Centinella node . My husband made pegylated interferon since october 2012.
Pegylated interferon therapy is 2 years is an adjunct treatment (preventive).
In addition he has scans every 6 months (PET or CT), and you should not expose yourself to the sun.
The future is uncertain but now there are many medicines that years ago there was.
regards
Gaby
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- August 1, 2014 at 4:45 pm
I had micro amounts only in the SNL back in 2000. I had the full node dissection and a year of Interferon. I wanted you to hear that YES stage 3 is certainly survivable! It has been 14 years since my original dx. I have not had a reoccurrence or issues with the dissection. I also know of at least 2 others from the board that were dx as stage 3 around the same time as me, did Interferon, and have continued to do well. I remember at the beginning thinking "Stage 3 is only 1 step away from 4! Is it only a matter of time?" This fear eventually lessens but sometimes still creeps into my thoughts. Keep in mind that MANY people that have become NED (regardless of stage) have gone on with their lives and don't return to the board on a regular basis. This makes it difficult to get a LOT of positive results of those who are stage 3 that have never progressed.
As for the Interferon, I was one of the lucky ones that was able to tolerate it very well. I had headaches for the year and was nauseous a lot but was still able to keep up with the regular routines of my kids who were 5 and 7 at the time and still work 30 hours a week as an accountant. I would strongly recommend that you look into other treatments to see if there is something that might be better suited for you. However, I would HIGHLY suggest that if you are going to do NOTHING, please at least try Interferon for the high dose 1 month phase. Some studies are showing that you really only need the 1 month. You may be one like me that is able to tolerate it. I know my personal decision was I HAD to be there as my kids got older and was willing to do whatever it took. I would not have been able to forgive myself had I done nothing and melanoma reoccurred. Did the node dissection take care of all the melanoma or was it the Interferon that has kept it at bay? Not sure and don't really care! I'm thrilled to be here 14 years later as NED.
Whatever you decide to do, stand behind that decision 110% and don't look back! Please feel free to contact me if I can be of assistance. My email is [email protected].
Best of luck! Take care!
Cara
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- August 1, 2014 at 4:45 pm
I had micro amounts only in the SNL back in 2000. I had the full node dissection and a year of Interferon. I wanted you to hear that YES stage 3 is certainly survivable! It has been 14 years since my original dx. I have not had a reoccurrence or issues with the dissection. I also know of at least 2 others from the board that were dx as stage 3 around the same time as me, did Interferon, and have continued to do well. I remember at the beginning thinking "Stage 3 is only 1 step away from 4! Is it only a matter of time?" This fear eventually lessens but sometimes still creeps into my thoughts. Keep in mind that MANY people that have become NED (regardless of stage) have gone on with their lives and don't return to the board on a regular basis. This makes it difficult to get a LOT of positive results of those who are stage 3 that have never progressed.
As for the Interferon, I was one of the lucky ones that was able to tolerate it very well. I had headaches for the year and was nauseous a lot but was still able to keep up with the regular routines of my kids who were 5 and 7 at the time and still work 30 hours a week as an accountant. I would strongly recommend that you look into other treatments to see if there is something that might be better suited for you. However, I would HIGHLY suggest that if you are going to do NOTHING, please at least try Interferon for the high dose 1 month phase. Some studies are showing that you really only need the 1 month. You may be one like me that is able to tolerate it. I know my personal decision was I HAD to be there as my kids got older and was willing to do whatever it took. I would not have been able to forgive myself had I done nothing and melanoma reoccurred. Did the node dissection take care of all the melanoma or was it the Interferon that has kept it at bay? Not sure and don't really care! I'm thrilled to be here 14 years later as NED.
Whatever you decide to do, stand behind that decision 110% and don't look back! Please feel free to contact me if I can be of assistance. My email is [email protected].
Best of luck! Take care!
Cara
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- August 1, 2014 at 4:45 pm
I had micro amounts only in the SNL back in 2000. I had the full node dissection and a year of Interferon. I wanted you to hear that YES stage 3 is certainly survivable! It has been 14 years since my original dx. I have not had a reoccurrence or issues with the dissection. I also know of at least 2 others from the board that were dx as stage 3 around the same time as me, did Interferon, and have continued to do well. I remember at the beginning thinking "Stage 3 is only 1 step away from 4! Is it only a matter of time?" This fear eventually lessens but sometimes still creeps into my thoughts. Keep in mind that MANY people that have become NED (regardless of stage) have gone on with their lives and don't return to the board on a regular basis. This makes it difficult to get a LOT of positive results of those who are stage 3 that have never progressed.
As for the Interferon, I was one of the lucky ones that was able to tolerate it very well. I had headaches for the year and was nauseous a lot but was still able to keep up with the regular routines of my kids who were 5 and 7 at the time and still work 30 hours a week as an accountant. I would strongly recommend that you look into other treatments to see if there is something that might be better suited for you. However, I would HIGHLY suggest that if you are going to do NOTHING, please at least try Interferon for the high dose 1 month phase. Some studies are showing that you really only need the 1 month. You may be one like me that is able to tolerate it. I know my personal decision was I HAD to be there as my kids got older and was willing to do whatever it took. I would not have been able to forgive myself had I done nothing and melanoma reoccurred. Did the node dissection take care of all the melanoma or was it the Interferon that has kept it at bay? Not sure and don't really care! I'm thrilled to be here 14 years later as NED.
Whatever you decide to do, stand behind that decision 110% and don't look back! Please feel free to contact me if I can be of assistance. My email is [email protected].
Best of luck! Take care!
Cara
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- August 2, 2014 at 7:47 pm
Thanks so much for your thoughts. I may be emailing you soon. :). I am just terrified at this point with so much unknown. I'm getting another opinion since I now have a 1 and 1. I pathologist said I was clear- 1 said microscopic cell…. I'm tryibg to not imaging my little girl growing up without her mom – so hard not to do…have been praying big time! I'm so happy for you that you have had such wonderful results. I hope to follow in your footsteps!
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- August 2, 2014 at 7:47 pm
Thanks so much for your thoughts. I may be emailing you soon. :). I am just terrified at this point with so much unknown. I'm getting another opinion since I now have a 1 and 1. I pathologist said I was clear- 1 said microscopic cell…. I'm tryibg to not imaging my little girl growing up without her mom – so hard not to do…have been praying big time! I'm so happy for you that you have had such wonderful results. I hope to follow in your footsteps!
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- August 2, 2014 at 8:31 pm
Also did you get frequent scans?
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- August 2, 2014 at 8:31 pm
Also did you get frequent scans?
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- August 2, 2014 at 8:31 pm
Also did you get frequent scans?
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- August 2, 2014 at 7:47 pm
Thanks so much for your thoughts. I may be emailing you soon. :). I am just terrified at this point with so much unknown. I'm getting another opinion since I now have a 1 and 1. I pathologist said I was clear- 1 said microscopic cell…. I'm tryibg to not imaging my little girl growing up without her mom – so hard not to do…have been praying big time! I'm so happy for you that you have had such wonderful results. I hope to follow in your footsteps!
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- July 31, 2014 at 8:14 pm
I guess I should say I'm 3a as Long as no other nodes have any cells. I'm praying not since the sln only had 1 microscopic cell.
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- July 31, 2014 at 10:18 pm
You have another option, and that is "wait and watch" rather than interferon. It's hard enough having all your lymph nodes removed. Since your posting Anonymously, we really don't have a history on you so we don't know where those lymph nodes might be. But it's a hard road with drains in for a while and trying to care for a baby. Then you add Interferon after that…..
I chose to "wait and watch" because the stats for interferon just didn't justify the expense and the down time. I had 2 microscopic lymph nodes test positive. As of March I'll be 5 Years NED. Talk to you Oncologist about the best choice for you.
Good Luck,
Mary
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- July 31, 2014 at 10:18 pm
You have another option, and that is "wait and watch" rather than interferon. It's hard enough having all your lymph nodes removed. Since your posting Anonymously, we really don't have a history on you so we don't know where those lymph nodes might be. But it's a hard road with drains in for a while and trying to care for a baby. Then you add Interferon after that…..
I chose to "wait and watch" because the stats for interferon just didn't justify the expense and the down time. I had 2 microscopic lymph nodes test positive. As of March I'll be 5 Years NED. Talk to you Oncologist about the best choice for you.
Good Luck,
Mary
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- July 31, 2014 at 10:18 pm
You have another option, and that is "wait and watch" rather than interferon. It's hard enough having all your lymph nodes removed. Since your posting Anonymously, we really don't have a history on you so we don't know where those lymph nodes might be. But it's a hard road with drains in for a while and trying to care for a baby. Then you add Interferon after that…..
I chose to "wait and watch" because the stats for interferon just didn't justify the expense and the down time. I had 2 microscopic lymph nodes test positive. As of March I'll be 5 Years NED. Talk to you Oncologist about the best choice for you.
Good Luck,
Mary
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- August 1, 2014 at 12:46 am
I should probably create a profile- you are right! Some of my stats until I do though:
1.8mm on back
mitotic rate-3
not ulcerated
did not show lymphatic or blood vessel involvment
partial regression
1 microscopic cell found in sln- so now I will get others taken out to see if they contain melanoma.
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- August 1, 2014 at 12:46 am
I should probably create a profile- you are right! Some of my stats until I do though:
1.8mm on back
mitotic rate-3
not ulcerated
did not show lymphatic or blood vessel involvment
partial regression
1 microscopic cell found in sln- so now I will get others taken out to see if they contain melanoma.
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- August 1, 2014 at 12:46 am
I should probably create a profile- you are right! Some of my stats until I do though:
1.8mm on back
mitotic rate-3
not ulcerated
did not show lymphatic or blood vessel involvment
partial regression
1 microscopic cell found in sln- so now I will get others taken out to see if they contain melanoma.
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- August 1, 2014 at 1:11 pm
Hi Anonymous, I remember sitting down with my oncologist in May of 2012 and asking what are my choices. His response was Interferon or do nothing. Do some reading, educate yourself to these choices is my best advice. There is also a third choice being offered to some and that is clinical study of Ipilumumab, I am not sure of all the details. I know Dr.Jedd Wolchok talked about the early result of this study at the 2014 ASCO meetings. My choice in 2012 was high dose Interferon for one month followed by a year of self injections, but after one month and being sicker than I thought was possible I decided to stop. My liver was about to explode. I found the hardest part other than the physical was not having a way to measure if it was working. I didn't have any visible tumors so you couldn't get a Ct scan to see if it was working or not. Many on the board have said that they didn't progress after taking Interferon. Look at the stats, get a second opinion might be a good idea!!!! There is not a lot of research on if it is better to leave in the Lymph nodes in or not. It is the main tool that Oncologist use for staging of the cancer along with the Sentinal nodes. I have progressed as of July 2013 to stage 4 with Brain and lung mets and I am presently on a clinical trial of Ipi and Nivolumab. Part of me wished I still had the lymph nodes in my arms, since the T-cells are key to the Immumotherapy treatments. Also I have some issue with fluid build up in the region of the surgery. I wish the options were simple at this point but they are not. Members of the forum have a view of Melanoma from very different vantage points and you will probably get many suggestion of what is the best next step. I wish you the best. It would be hard to follow you as Anonymous so may be pick a forum name. Ed
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- August 1, 2014 at 1:11 pm
Hi Anonymous, I remember sitting down with my oncologist in May of 2012 and asking what are my choices. His response was Interferon or do nothing. Do some reading, educate yourself to these choices is my best advice. There is also a third choice being offered to some and that is clinical study of Ipilumumab, I am not sure of all the details. I know Dr.Jedd Wolchok talked about the early result of this study at the 2014 ASCO meetings. My choice in 2012 was high dose Interferon for one month followed by a year of self injections, but after one month and being sicker than I thought was possible I decided to stop. My liver was about to explode. I found the hardest part other than the physical was not having a way to measure if it was working. I didn't have any visible tumors so you couldn't get a Ct scan to see if it was working or not. Many on the board have said that they didn't progress after taking Interferon. Look at the stats, get a second opinion might be a good idea!!!! There is not a lot of research on if it is better to leave in the Lymph nodes in or not. It is the main tool that Oncologist use for staging of the cancer along with the Sentinal nodes. I have progressed as of July 2013 to stage 4 with Brain and lung mets and I am presently on a clinical trial of Ipi and Nivolumab. Part of me wished I still had the lymph nodes in my arms, since the T-cells are key to the Immumotherapy treatments. Also I have some issue with fluid build up in the region of the surgery. I wish the options were simple at this point but they are not. Members of the forum have a view of Melanoma from very different vantage points and you will probably get many suggestion of what is the best next step. I wish you the best. It would be hard to follow you as Anonymous so may be pick a forum name. Ed
-
- August 1, 2014 at 1:11 pm
Hi Anonymous, I remember sitting down with my oncologist in May of 2012 and asking what are my choices. His response was Interferon or do nothing. Do some reading, educate yourself to these choices is my best advice. There is also a third choice being offered to some and that is clinical study of Ipilumumab, I am not sure of all the details. I know Dr.Jedd Wolchok talked about the early result of this study at the 2014 ASCO meetings. My choice in 2012 was high dose Interferon for one month followed by a year of self injections, but after one month and being sicker than I thought was possible I decided to stop. My liver was about to explode. I found the hardest part other than the physical was not having a way to measure if it was working. I didn't have any visible tumors so you couldn't get a Ct scan to see if it was working or not. Many on the board have said that they didn't progress after taking Interferon. Look at the stats, get a second opinion might be a good idea!!!! There is not a lot of research on if it is better to leave in the Lymph nodes in or not. It is the main tool that Oncologist use for staging of the cancer along with the Sentinal nodes. I have progressed as of July 2013 to stage 4 with Brain and lung mets and I am presently on a clinical trial of Ipi and Nivolumab. Part of me wished I still had the lymph nodes in my arms, since the T-cells are key to the Immumotherapy treatments. Also I have some issue with fluid build up in the region of the surgery. I wish the options were simple at this point but they are not. Members of the forum have a view of Melanoma from very different vantage points and you will probably get many suggestion of what is the best next step. I wish you the best. It would be hard to follow you as Anonymous so may be pick a forum name. Ed
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- August 2, 2014 at 9:10 pm
Hi there. My husband was stage 3, cannot remember his sub stage in 1998. He had lymph node mapping and dissection. His tumor was very deep, ulcerated and high mitotic rate. His nodes were negative. Interferon was an option, but he declined. He was not yet my husband then and was working as a consultant. He did not have health insurance and once married and on my policy we could not get any medical treatment related to melanoma covered. He ultimately decided against the interferon. We had paid cash for his outpatient work up, wide local excision, lymph node mapping to the tune of $32,000. So I am sure the financial burden played into his decision. In any case he did not experience any recurrence until 2012. Now on my health insurance with no pre-existing condition clause he has been blessed to receive treatment @ Moffitt Cancer Center in Tampa
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- August 2, 2014 at 9:10 pm
Hi there. My husband was stage 3, cannot remember his sub stage in 1998. He had lymph node mapping and dissection. His tumor was very deep, ulcerated and high mitotic rate. His nodes were negative. Interferon was an option, but he declined. He was not yet my husband then and was working as a consultant. He did not have health insurance and once married and on my policy we could not get any medical treatment related to melanoma covered. He ultimately decided against the interferon. We had paid cash for his outpatient work up, wide local excision, lymph node mapping to the tune of $32,000. So I am sure the financial burden played into his decision. In any case he did not experience any recurrence until 2012. Now on my health insurance with no pre-existing condition clause he has been blessed to receive treatment @ Moffitt Cancer Center in Tampa
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- August 2, 2014 at 9:10 pm
Hi there. My husband was stage 3, cannot remember his sub stage in 1998. He had lymph node mapping and dissection. His tumor was very deep, ulcerated and high mitotic rate. His nodes were negative. Interferon was an option, but he declined. He was not yet my husband then and was working as a consultant. He did not have health insurance and once married and on my policy we could not get any medical treatment related to melanoma covered. He ultimately decided against the interferon. We had paid cash for his outpatient work up, wide local excision, lymph node mapping to the tune of $32,000. So I am sure the financial burden played into his decision. In any case he did not experience any recurrence until 2012. Now on my health insurance with no pre-existing condition clause he has been blessed to receive treatment @ Moffitt Cancer Center in Tampa
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