› Forums › General Melanoma Community › New to boards-stage3 trial
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fdess056.
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- July 25, 2012 at 6:38 pm
I was dx with melanoma in 2007 when a mole was removed from the back of my neck stage unknown. In 6/2012 was dx as stage 3 when a swollen lymph node was removed and a lymph node dissection was also done to remove 12 other nodes which were all negative. I am being seen at Moffitt in Tampa while finishing up 20 treatments of radiation locally. My next step is the interferon/ipilimumab clinical trial at Moffitt in August. Anyone out there going to Moffitt or used either drug to tell their experiences???I was dx with melanoma in 2007 when a mole was removed from the back of my neck stage unknown. In 6/2012 was dx as stage 3 when a swollen lymph node was removed and a lymph node dissection was also done to remove 12 other nodes which were all negative. I am being seen at Moffitt in Tampa while finishing up 20 treatments of radiation locally. My next step is the interferon/ipilimumab clinical trial at Moffitt in August. Anyone out there going to Moffitt or used either drug to tell their experiences??? I’m really worried about the side effects since I will be going back to work as a school teacher in August when I start my trial.
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- July 25, 2012 at 9:55 pm
My husband was a successful Ipi responder on a clinical and just had scans last Friday and is now NED (no evidence of disease). You can read about him in his profile.
Judy (loving wife of Gene)
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- July 25, 2012 at 10:24 pm
Welcome to the board!! I have just recently joined as well. I wish I could answer your questions, but I need the same answers. I am being considered for the same study. I do want to ask you about radiation. I am considering it, even though my oncologist has said that it is not very effective with melanoma. I am stage III like you, with a story that sounds similar to yours….Can you enlighten me about your experience with radiation, and the opinion of it given by your oncologist?Thanks so much.
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- July 25, 2012 at 11:10 pm
Well I am going to Moffitt Cancer Research Center in Tampa and they never even questioned radiation. They actually recommend it for me. I chose to do the radication closer to home since I would be doing it every day so they referred me to radiation oncologist here. He didn’t question it either so I am now confused by what yours told you. I have to have 20 (5 days a week for 4 weeks) treatments. Today was number 15. My next has the sunburned look but not painful. After the second week I started to get a sore throat. I could only eat soft foods for a few days until they prescribed me “Ron’s Rum”. I have used it some but not very much. I actually feel pretty good besides the throat being sore. Better yet I only have 4 treatments left!!! Hope it helps and good luck, -
- July 25, 2012 at 11:10 pm
Well I am going to Moffitt Cancer Research Center in Tampa and they never even questioned radiation. They actually recommend it for me. I chose to do the radication closer to home since I would be doing it every day so they referred me to radiation oncologist here. He didn’t question it either so I am now confused by what yours told you. I have to have 20 (5 days a week for 4 weeks) treatments. Today was number 15. My next has the sunburned look but not painful. After the second week I started to get a sore throat. I could only eat soft foods for a few days until they prescribed me “Ron’s Rum”. I have used it some but not very much. I actually feel pretty good besides the throat being sore. Better yet I only have 4 treatments left!!! Hope it helps and good luck, -
- July 25, 2012 at 11:10 pm
Well I am going to Moffitt Cancer Research Center in Tampa and they never even questioned radiation. They actually recommend it for me. I chose to do the radication closer to home since I would be doing it every day so they referred me to radiation oncologist here. He didn’t question it either so I am now confused by what yours told you. I have to have 20 (5 days a week for 4 weeks) treatments. Today was number 15. My next has the sunburned look but not painful. After the second week I started to get a sore throat. I could only eat soft foods for a few days until they prescribed me “Ron’s Rum”. I have used it some but not very much. I actually feel pretty good besides the throat being sore. Better yet I only have 4 treatments left!!! Hope it helps and good luck, -
- July 25, 2012 at 10:24 pm
Welcome to the board!! I have just recently joined as well. I wish I could answer your questions, but I need the same answers. I am being considered for the same study. I do want to ask you about radiation. I am considering it, even though my oncologist has said that it is not very effective with melanoma. I am stage III like you, with a story that sounds similar to yours….Can you enlighten me about your experience with radiation, and the opinion of it given by your oncologist?Thanks so much.
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- July 25, 2012 at 10:24 pm
Welcome to the board!! I have just recently joined as well. I wish I could answer your questions, but I need the same answers. I am being considered for the same study. I do want to ask you about radiation. I am considering it, even though my oncologist has said that it is not very effective with melanoma. I am stage III like you, with a story that sounds similar to yours….Can you enlighten me about your experience with radiation, and the opinion of it given by your oncologist?Thanks so much.
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- July 26, 2012 at 2:38 pm
Why was the initial stage unknown? Was there a pathology report that staged it?
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- July 26, 2012 at 5:49 pm
I put unknown because I wasn’t ever told a stage by doctors then. I was also told be a second doctor that my chances were less than 10% for it coming back. I didn’t know much about melanoma then either and I guess was clueless…until this time.
Here is what my pathology report said back in 2007:
Malignant Melanoma
Breslow depth 1.2 mm
Clark’s level III-IV
No regression
No lymphovascular invasion
Mitotic index: low
MART-1 ans s-100 positiveI am still not an expert on how to read this. I was thinking stage 1 but not for sure. Any ideas??
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- July 26, 2012 at 5:49 pm
I put unknown because I wasn’t ever told a stage by doctors then. I was also told be a second doctor that my chances were less than 10% for it coming back. I didn’t know much about melanoma then either and I guess was clueless…until this time.
Here is what my pathology report said back in 2007:
Malignant Melanoma
Breslow depth 1.2 mm
Clark’s level III-IV
No regression
No lymphovascular invasion
Mitotic index: low
MART-1 ans s-100 positiveI am still not an expert on how to read this. I was thinking stage 1 but not for sure. Any ideas??
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- July 26, 2012 at 5:49 pm
I put unknown because I wasn’t ever told a stage by doctors then. I was also told be a second doctor that my chances were less than 10% for it coming back. I didn’t know much about melanoma then either and I guess was clueless…until this time.
Here is what my pathology report said back in 2007:
Malignant Melanoma
Breslow depth 1.2 mm
Clark’s level III-IV
No regression
No lymphovascular invasion
Mitotic index: low
MART-1 ans s-100 positiveI am still not an expert on how to read this. I was thinking stage 1 but not for sure. Any ideas??
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- July 27, 2012 at 12:46 am
Hi,
I hear Moffitt is a great place to be! I did 30 radiation treatments last summer…no problem. I also did interferon back in 2009. I finished the full year…rough, but doable. Everyone reacts differently to it. I teach first grade and didn't miss a day during treatment, so I was very lucky. Ipi worries me because a lot of people have stomach issues with it, and being a teacher, you have to think of will you have access to a bathroom at a moment's notice? Good luck to you with whatever treatment you choose. Please feel free to email me if you have any other questions.
Tricia
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- July 27, 2012 at 12:46 am
Hi,
I hear Moffitt is a great place to be! I did 30 radiation treatments last summer…no problem. I also did interferon back in 2009. I finished the full year…rough, but doable. Everyone reacts differently to it. I teach first grade and didn't miss a day during treatment, so I was very lucky. Ipi worries me because a lot of people have stomach issues with it, and being a teacher, you have to think of will you have access to a bathroom at a moment's notice? Good luck to you with whatever treatment you choose. Please feel free to email me if you have any other questions.
Tricia
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- July 27, 2012 at 2:01 am
Tricia,
How may I ask, do you manage to do the interferon and not miss a day of school? Did you do the first month during the summer or school year? I teach kindergarten so I have a bathroom right in my classroom but I guess I never really thought about the stomach issue like that until now. I am just really nervous how either drug will work with school… -
- July 27, 2012 at 2:01 am
Tricia,
How may I ask, do you manage to do the interferon and not miss a day of school? Did you do the first month during the summer or school year? I teach kindergarten so I have a bathroom right in my classroom but I guess I never really thought about the stomach issue like that until now. I am just really nervous how either drug will work with school… -
- July 27, 2012 at 2:01 am
Tricia,
How may I ask, do you manage to do the interferon and not miss a day of school? Did you do the first month during the summer or school year? I teach kindergarten so I have a bathroom right in my classroom but I guess I never really thought about the stomach issue like that until now. I am just really nervous how either drug will work with school…
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- July 27, 2012 at 12:46 am
Hi,
I hear Moffitt is a great place to be! I did 30 radiation treatments last summer…no problem. I also did interferon back in 2009. I finished the full year…rough, but doable. Everyone reacts differently to it. I teach first grade and didn't miss a day during treatment, so I was very lucky. Ipi worries me because a lot of people have stomach issues with it, and being a teacher, you have to think of will you have access to a bathroom at a moment's notice? Good luck to you with whatever treatment you choose. Please feel free to email me if you have any other questions.
Tricia
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- July 27, 2012 at 10:03 pm
Hi,
I have been a patient at Moffitt since 2005 when the melanoma spread to my liver. My medical oncologist there is Dr. Jeff Weber. I have heard very good things about your oncologist…Dr. Kudchadkar.
I did Interferon in 2004-2005 when I was first diagnosed with Stage III melanoma with an unknown primary site. The melanoma was in my groin lymph node basin. I did the 12 months of Interferon. I was a RN and working full time when I was diagnosed. I took a medical LOA to have the lymph node dissection and then for the month of high dose Interferon. I had to keep extending my leave since there was no way I could work a 12 hour shift and take care of people. Interferon makes most people very tired and gives most people "brain fog". Of course, there can be many other side effects. Everyone responds differently but I can't imagine working, being a mother to 2 small children and doing Interferon (plus the drive time to Moffitt). I think getting lots of rest is very important when receiving treatment.
I'm not familiar with the trial but I just tried to quickly research it. Is it that you will be in either the Interferon arm or the Ipi arm? If that is correct and you are in the Interferon arm, is it for the high dose month only or is it longer? Amy from Michigan (I think her sign on is akls) is a teacher and did Interferon a couple of years ago. Hopefully, she'll see your post and respond.
There is a man named JimM who goes to Moffitt and also is a member of this board. He also lives in your hometown. He was on the Ipi trial at Moffitt a couple of years ago as a Stage III patient. I'm sure he'd be happy to share his experience with you. He's a social worker. If he does not respond and you are interested in contacting him (or him contacting you) I would be happy to arrange that.
I'm guessing here but I think radiation might have been part of your treatment plan since your lymph node/tumor had extra capsular extension.
We're here for you. Please feel free to contact me ([email protected])
Stay Strong
King (Kathie)
Stage IV 7/05 Liver mets
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- July 28, 2012 at 12:23 am
Thanks Kathie for replying. Yes you found the right trial interferon arm or ipi arm. If I get the interferon arm it will be the high dose for a month everyday and injections at home 3x a week. It is hard to think about how this will all work with school. It makes me very nervous indeed. I did find the one teachers profile you mentioned so I’ll contact her. However, I didn’t find JimM so any help you can give me there would be greatly appreciated. Thanks so much. I love this board and how everyone can be so caring and helpful through the tough times!! -
- July 28, 2012 at 3:25 am
I just dropped JimM an email. If I don't hear from him in a day or two, I will give him a call. I know that he will be happy to talk to you. When will you know what arm of the trial you'll be in? I want to stay positive but also realistic. If you get in the Interferon arm and will be receiving the high dose treatments at Moffitt, how could you possibly commute, get the infusions and teach? That's not even considering any side effects. I wasn't being treated at Moffitt when I received Interferon but I received the standard dose based on my BSA (body surface area). I, too, did the 11 months of low dose after the high dose month (BootCamp). I did drive while I did Interferon but some people have said their doctors told them not to drive.
Do you have family and friend support? This will be a time that you wil have to accept it.
One day at a time.
Stay Strong
King
Stage IV 7/05 Liver mets
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- July 28, 2012 at 3:25 am
I just dropped JimM an email. If I don't hear from him in a day or two, I will give him a call. I know that he will be happy to talk to you. When will you know what arm of the trial you'll be in? I want to stay positive but also realistic. If you get in the Interferon arm and will be receiving the high dose treatments at Moffitt, how could you possibly commute, get the infusions and teach? That's not even considering any side effects. I wasn't being treated at Moffitt when I received Interferon but I received the standard dose based on my BSA (body surface area). I, too, did the 11 months of low dose after the high dose month (BootCamp). I did drive while I did Interferon but some people have said their doctors told them not to drive.
Do you have family and friend support? This will be a time that you wil have to accept it.
One day at a time.
Stay Strong
King
Stage IV 7/05 Liver mets
-
- July 28, 2012 at 3:25 am
I just dropped JimM an email. If I don't hear from him in a day or two, I will give him a call. I know that he will be happy to talk to you. When will you know what arm of the trial you'll be in? I want to stay positive but also realistic. If you get in the Interferon arm and will be receiving the high dose treatments at Moffitt, how could you possibly commute, get the infusions and teach? That's not even considering any side effects. I wasn't being treated at Moffitt when I received Interferon but I received the standard dose based on my BSA (body surface area). I, too, did the 11 months of low dose after the high dose month (BootCamp). I did drive while I did Interferon but some people have said their doctors told them not to drive.
Do you have family and friend support? This will be a time that you wil have to accept it.
One day at a time.
Stay Strong
King
Stage IV 7/05 Liver mets
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- July 28, 2012 at 12:23 am
Thanks Kathie for replying. Yes you found the right trial interferon arm or ipi arm. If I get the interferon arm it will be the high dose for a month everyday and injections at home 3x a week. It is hard to think about how this will all work with school. It makes me very nervous indeed. I did find the one teachers profile you mentioned so I’ll contact her. However, I didn’t find JimM so any help you can give me there would be greatly appreciated. Thanks so much. I love this board and how everyone can be so caring and helpful through the tough times!! -
- July 28, 2012 at 12:23 am
Thanks Kathie for replying. Yes you found the right trial interferon arm or ipi arm. If I get the interferon arm it will be the high dose for a month everyday and injections at home 3x a week. It is hard to think about how this will all work with school. It makes me very nervous indeed. I did find the one teachers profile you mentioned so I’ll contact her. However, I didn’t find JimM so any help you can give me there would be greatly appreciated. Thanks so much. I love this board and how everyone can be so caring and helpful through the tough times!!
-
- July 27, 2012 at 10:03 pm
Hi,
I have been a patient at Moffitt since 2005 when the melanoma spread to my liver. My medical oncologist there is Dr. Jeff Weber. I have heard very good things about your oncologist…Dr. Kudchadkar.
I did Interferon in 2004-2005 when I was first diagnosed with Stage III melanoma with an unknown primary site. The melanoma was in my groin lymph node basin. I did the 12 months of Interferon. I was a RN and working full time when I was diagnosed. I took a medical LOA to have the lymph node dissection and then for the month of high dose Interferon. I had to keep extending my leave since there was no way I could work a 12 hour shift and take care of people. Interferon makes most people very tired and gives most people "brain fog". Of course, there can be many other side effects. Everyone responds differently but I can't imagine working, being a mother to 2 small children and doing Interferon (plus the drive time to Moffitt). I think getting lots of rest is very important when receiving treatment.
I'm not familiar with the trial but I just tried to quickly research it. Is it that you will be in either the Interferon arm or the Ipi arm? If that is correct and you are in the Interferon arm, is it for the high dose month only or is it longer? Amy from Michigan (I think her sign on is akls) is a teacher and did Interferon a couple of years ago. Hopefully, she'll see your post and respond.
There is a man named JimM who goes to Moffitt and also is a member of this board. He also lives in your hometown. He was on the Ipi trial at Moffitt a couple of years ago as a Stage III patient. I'm sure he'd be happy to share his experience with you. He's a social worker. If he does not respond and you are interested in contacting him (or him contacting you) I would be happy to arrange that.
I'm guessing here but I think radiation might have been part of your treatment plan since your lymph node/tumor had extra capsular extension.
We're here for you. Please feel free to contact me ([email protected])
Stay Strong
King (Kathie)
Stage IV 7/05 Liver mets
-
- July 27, 2012 at 10:03 pm
Hi,
I have been a patient at Moffitt since 2005 when the melanoma spread to my liver. My medical oncologist there is Dr. Jeff Weber. I have heard very good things about your oncologist…Dr. Kudchadkar.
I did Interferon in 2004-2005 when I was first diagnosed with Stage III melanoma with an unknown primary site. The melanoma was in my groin lymph node basin. I did the 12 months of Interferon. I was a RN and working full time when I was diagnosed. I took a medical LOA to have the lymph node dissection and then for the month of high dose Interferon. I had to keep extending my leave since there was no way I could work a 12 hour shift and take care of people. Interferon makes most people very tired and gives most people "brain fog". Of course, there can be many other side effects. Everyone responds differently but I can't imagine working, being a mother to 2 small children and doing Interferon (plus the drive time to Moffitt). I think getting lots of rest is very important when receiving treatment.
I'm not familiar with the trial but I just tried to quickly research it. Is it that you will be in either the Interferon arm or the Ipi arm? If that is correct and you are in the Interferon arm, is it for the high dose month only or is it longer? Amy from Michigan (I think her sign on is akls) is a teacher and did Interferon a couple of years ago. Hopefully, she'll see your post and respond.
There is a man named JimM who goes to Moffitt and also is a member of this board. He also lives in your hometown. He was on the Ipi trial at Moffitt a couple of years ago as a Stage III patient. I'm sure he'd be happy to share his experience with you. He's a social worker. If he does not respond and you are interested in contacting him (or him contacting you) I would be happy to arrange that.
I'm guessing here but I think radiation might have been part of your treatment plan since your lymph node/tumor had extra capsular extension.
We're here for you. Please feel free to contact me ([email protected])
Stay Strong
King (Kathie)
Stage IV 7/05 Liver mets
-
- July 28, 2012 at 10:42 pm
I had a radical neck dissection in 2009 followed by radiation and Interferon. I was also told that melanoma is resistant to radiation but has been known to respond to higher doses. i received 5 treatments of 600 rad (I think triple normal dose) over a 2 1/2 week period. No major problems with it. That was followed by 7 months of interferon. I was forced to drop out before completing the 12 month treatment due to some neurological side effects. I am a runner and was able to run 7 miles before the interferon. After a short time i was not able to walk up 2 flights of stairs without rest. . That being said, I did travel on a cruise vacation while on the self-maintenance. Once i stopped it took about 6 weeks to get back to normal. Everyone seems to handle and respond to Interferon differently. . I remained NED for 20 months after the treatments, so for me it was worth it. However, I don't know if i would have also remained NED without the radiation and Interferon.. I was also on Ipilmumab and was able to handle that much better….just a fair amount of fatigue. After Ippi my lung mets have been reduced by 65%, brain and bone mets remain stable. But a PET scan just showed a new melanoma in my stomach, so whether or not the Ipi worked is still up in the air.
best of luck with you treatments
Frankd brooklyn
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- July 28, 2012 at 10:42 pm
I had a radical neck dissection in 2009 followed by radiation and Interferon. I was also told that melanoma is resistant to radiation but has been known to respond to higher doses. i received 5 treatments of 600 rad (I think triple normal dose) over a 2 1/2 week period. No major problems with it. That was followed by 7 months of interferon. I was forced to drop out before completing the 12 month treatment due to some neurological side effects. I am a runner and was able to run 7 miles before the interferon. After a short time i was not able to walk up 2 flights of stairs without rest. . That being said, I did travel on a cruise vacation while on the self-maintenance. Once i stopped it took about 6 weeks to get back to normal. Everyone seems to handle and respond to Interferon differently. . I remained NED for 20 months after the treatments, so for me it was worth it. However, I don't know if i would have also remained NED without the radiation and Interferon.. I was also on Ipilmumab and was able to handle that much better….just a fair amount of fatigue. After Ippi my lung mets have been reduced by 65%, brain and bone mets remain stable. But a PET scan just showed a new melanoma in my stomach, so whether or not the Ipi worked is still up in the air.
best of luck with you treatments
Frankd brooklyn
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- July 28, 2012 at 10:42 pm
I had a radical neck dissection in 2009 followed by radiation and Interferon. I was also told that melanoma is resistant to radiation but has been known to respond to higher doses. i received 5 treatments of 600 rad (I think triple normal dose) over a 2 1/2 week period. No major problems with it. That was followed by 7 months of interferon. I was forced to drop out before completing the 12 month treatment due to some neurological side effects. I am a runner and was able to run 7 miles before the interferon. After a short time i was not able to walk up 2 flights of stairs without rest. . That being said, I did travel on a cruise vacation while on the self-maintenance. Once i stopped it took about 6 weeks to get back to normal. Everyone seems to handle and respond to Interferon differently. . I remained NED for 20 months after the treatments, so for me it was worth it. However, I don't know if i would have also remained NED without the radiation and Interferon.. I was also on Ipilmumab and was able to handle that much better….just a fair amount of fatigue. After Ippi my lung mets have been reduced by 65%, brain and bone mets remain stable. But a PET scan just showed a new melanoma in my stomach, so whether or not the Ipi worked is still up in the air.
best of luck with you treatments
Frankd brooklyn
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Tagged: cutaneous melanoma
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