› Forums › General Melanoma Community › 9 lung nodules! Desperate for advice
- This topic has 27 replies, 6 voices, and was last updated 11 years, 4 months ago by
TSchulz.
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- May 19, 2013 at 10:56 am
I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8×8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week.I have had two tiny lung nodules since January ( 2 mm and 3 mm). In march I had a CT scan on lung. Both nodules grew about 1 mm. I had a MRI of brain in April which was clear and a CT on lower body which was clear. Last week I had a CT on lungs again to qualify for IPPI/anti-pd1 trial. I found out I have 7 more tiny nodules in both lungs plus the two nodules have grown about 2 mm. None of the nodules are 1 cm to qualify for study. The biggest is 8×8 mm. Plus I just last week got a 2 inch blister on my upper thigh where I deal with lymphedema. There are doing a biopsy this week. What are my options? Should I wait to get in study or start IPPI right away? Is it possible to do targeted radiation and then immunotherapy ? Can they do surgery on that many lung nodules? I already had one lung nodule removed by surgery before January . I am desperate for advice!!!
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- May 19, 2013 at 7:08 pm
Do you qualify for the Yervoy + Anti-PD-1 trial. If so, I wound contact Dr. Jedd Wolchok at Sloan Kettering. If not I would try Yervoy followed by HD IL-2 if needed.
Best regards,
Jimmy B
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- May 19, 2013 at 7:08 pm
Do you qualify for the Yervoy + Anti-PD-1 trial. If so, I wound contact Dr. Jedd Wolchok at Sloan Kettering. If not I would try Yervoy followed by HD IL-2 if needed.
Best regards,
Jimmy B
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- May 19, 2013 at 7:08 pm
Do you qualify for the Yervoy + Anti-PD-1 trial. If so, I wound contact Dr. Jedd Wolchok at Sloan Kettering. If not I would try Yervoy followed by HD IL-2 if needed.
Best regards,
Jimmy B
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- May 19, 2013 at 7:17 pm
(Yervoy + Anti-PD-1 therapy) a promising combo is accruing at the following: Dana Farber, Mass General, Beth Israel, Moffitt, University of VA., UPENN, University of Indiana, Lehigh Valley Health network (PA)
Jimmy b
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- May 19, 2013 at 7:17 pm
(Yervoy + Anti-PD-1 therapy) a promising combo is accruing at the following: Dana Farber, Mass General, Beth Israel, Moffitt, University of VA., UPENN, University of Indiana, Lehigh Valley Health network (PA)
Jimmy b
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- May 19, 2013 at 7:17 pm
(Yervoy + Anti-PD-1 therapy) a promising combo is accruing at the following: Dana Farber, Mass General, Beth Israel, Moffitt, University of VA., UPENN, University of Indiana, Lehigh Valley Health network (PA)
Jimmy b
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- May 19, 2013 at 7:36 pm
I had a small melanoma removed from my lung last July and as of January had four or five tiny mets in my lungs. Now I am in a similar situation to yours, waiting for lung mets to reach 1 cm so I can have a needle biopsy and meet the requirements for an anti-PD1 trial. My last scan on May 14 showed one met at 8cm. My oncologist is going to scan me in a month, and if it is still not 1 cm, then again in another month. Apparently it is a good thing that the mets are slow growing — more good symptom-free time. My oncologist thinks that waiting a bit for a good clinical trial is preferable to starting IPI at this point. But different oncologists may have differing points of view about that so you should definitely take that question to your oncologist. The hard part is the waiting and the uncertainty.
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- May 19, 2013 at 7:36 pm
I had a small melanoma removed from my lung last July and as of January had four or five tiny mets in my lungs. Now I am in a similar situation to yours, waiting for lung mets to reach 1 cm so I can have a needle biopsy and meet the requirements for an anti-PD1 trial. My last scan on May 14 showed one met at 8cm. My oncologist is going to scan me in a month, and if it is still not 1 cm, then again in another month. Apparently it is a good thing that the mets are slow growing — more good symptom-free time. My oncologist thinks that waiting a bit for a good clinical trial is preferable to starting IPI at this point. But different oncologists may have differing points of view about that so you should definitely take that question to your oncologist. The hard part is the waiting and the uncertainty.
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- May 19, 2013 at 7:36 pm
I had a small melanoma removed from my lung last July and as of January had four or five tiny mets in my lungs. Now I am in a similar situation to yours, waiting for lung mets to reach 1 cm so I can have a needle biopsy and meet the requirements for an anti-PD1 trial. My last scan on May 14 showed one met at 8cm. My oncologist is going to scan me in a month, and if it is still not 1 cm, then again in another month. Apparently it is a good thing that the mets are slow growing — more good symptom-free time. My oncologist thinks that waiting a bit for a good clinical trial is preferable to starting IPI at this point. But different oncologists may have differing points of view about that so you should definitely take that question to your oncologist. The hard part is the waiting and the uncertainty.
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- May 19, 2013 at 9:30 pm
Thank you both for your advice. I very much appreciate it!! As of now, I don’t qualify because the largest is 8×8 mm and you need 1 cm lung nodule to qualify. I don’t know whether to risk waiting a month to see if I will then be able to join the study. Do you Jim because of your vast knowledge on melanoma know if they can do STRD with IPI if you have 9 lung nodules? Otherwise I have written Dr. Rosenberg to see if I qualify for the ACT study.-
- May 21, 2013 at 11:16 pm
I am not familiar with the ipi/anti-PD-1 trial and any results but in reading through your thread I thought I'd make a suggestion for you to consider. If you are like me – your 8mm nodule will soon be big enough for you to qualify for any trial – hopefully not but it seems to be growing.
Without knowing all of you details you may want to consider trying HD IL-2 or starting on ipilibumab soon, it sounds as if you have a low tumor volume and it is pretty slow growing. You may respond which would be great, and possibly a long durable response. If you don't and your tumors continue to grow you then have other options. You could pursue a TIL trial at NIH, MDA or Moffitt. You need to have harvestable tumors to proceed – usually a subcutaneous nodule but I think they will go after other tumors to get the cells too. Although there is no specific data… there have been rumblings that ACT/TIL treatments may be more successful after ipilibumab. If you don't select the TIL approach you could find an individual Anti-PD1 trial.
Personally, I like the idea of preserving possible treatments for as long as possible.
Good luck. I've been through this decision making process all to recently and know how difficult it is.
All the best,
Troy
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- May 21, 2013 at 11:16 pm
I am not familiar with the ipi/anti-PD-1 trial and any results but in reading through your thread I thought I'd make a suggestion for you to consider. If you are like me – your 8mm nodule will soon be big enough for you to qualify for any trial – hopefully not but it seems to be growing.
Without knowing all of you details you may want to consider trying HD IL-2 or starting on ipilibumab soon, it sounds as if you have a low tumor volume and it is pretty slow growing. You may respond which would be great, and possibly a long durable response. If you don't and your tumors continue to grow you then have other options. You could pursue a TIL trial at NIH, MDA or Moffitt. You need to have harvestable tumors to proceed – usually a subcutaneous nodule but I think they will go after other tumors to get the cells too. Although there is no specific data… there have been rumblings that ACT/TIL treatments may be more successful after ipilibumab. If you don't select the TIL approach you could find an individual Anti-PD1 trial.
Personally, I like the idea of preserving possible treatments for as long as possible.
Good luck. I've been through this decision making process all to recently and know how difficult it is.
All the best,
Troy
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- May 22, 2013 at 12:21 am
Thank you Troy for your advice! We are on the same wavelength. I wrote Dr. Rosenberg this weekend and we have an appointment next week. I think highly of the ACT/TIL trial. I hope it works. Where did you hear it works better to have IPI first? -
- May 22, 2013 at 12:21 am
Thank you Troy for your advice! We are on the same wavelength. I wrote Dr. Rosenberg this weekend and we have an appointment next week. I think highly of the ACT/TIL trial. I hope it works. Where did you hear it works better to have IPI first? -
- May 22, 2013 at 1:55 am
Hi Anonymous,
Dr. Rosenberg is doing a webinar for the Melanoma International Foundation tomorrow. These webinars are usually available a day or two later if you don't get a chance to catch it live. See: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34256
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- May 22, 2013 at 1:55 am
Hi Anonymous,
Dr. Rosenberg is doing a webinar for the Melanoma International Foundation tomorrow. These webinars are usually available a day or two later if you don't get a chance to catch it live. See: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34256
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- May 22, 2013 at 1:55 am
Hi Anonymous,
Dr. Rosenberg is doing a webinar for the Melanoma International Foundation tomorrow. These webinars are usually available a day or two later if you don't get a chance to catch it live. See: http://www.z2systems.com/mif/viewtopic.php?f=54&t=34256
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- May 22, 2013 at 3:04 am
Good luck with the process. I found the whole experience to be interesting. I just passed a year since my treatment there and would be happy to share any advice should you want. You can email offline at:
[email protected]I don’t recall where I heard that the TIL results may be better in those who recently had ipi. It may have been on one of my visits to NIH but be certain – it is not proven, and possibly only observed in a small number of patients if there is anything to it at all. You may want to ask them about it while you are there.
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- May 22, 2013 at 3:04 am
Good luck with the process. I found the whole experience to be interesting. I just passed a year since my treatment there and would be happy to share any advice should you want. You can email offline at:
[email protected]I don’t recall where I heard that the TIL results may be better in those who recently had ipi. It may have been on one of my visits to NIH but be certain – it is not proven, and possibly only observed in a small number of patients if there is anything to it at all. You may want to ask them about it while you are there.
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- May 22, 2013 at 3:04 am
Good luck with the process. I found the whole experience to be interesting. I just passed a year since my treatment there and would be happy to share any advice should you want. You can email offline at:
[email protected]I don’t recall where I heard that the TIL results may be better in those who recently had ipi. It may have been on one of my visits to NIH but be certain – it is not proven, and possibly only observed in a small number of patients if there is anything to it at all. You may want to ask them about it while you are there.
-
- May 22, 2013 at 12:21 am
Thank you Troy for your advice! We are on the same wavelength. I wrote Dr. Rosenberg this weekend and we have an appointment next week. I think highly of the ACT/TIL trial. I hope it works. Where did you hear it works better to have IPI first? -
- May 21, 2013 at 11:16 pm
I am not familiar with the ipi/anti-PD-1 trial and any results but in reading through your thread I thought I'd make a suggestion for you to consider. If you are like me – your 8mm nodule will soon be big enough for you to qualify for any trial – hopefully not but it seems to be growing.
Without knowing all of you details you may want to consider trying HD IL-2 or starting on ipilibumab soon, it sounds as if you have a low tumor volume and it is pretty slow growing. You may respond which would be great, and possibly a long durable response. If you don't and your tumors continue to grow you then have other options. You could pursue a TIL trial at NIH, MDA or Moffitt. You need to have harvestable tumors to proceed – usually a subcutaneous nodule but I think they will go after other tumors to get the cells too. Although there is no specific data… there have been rumblings that ACT/TIL treatments may be more successful after ipilibumab. If you don't select the TIL approach you could find an individual Anti-PD1 trial.
Personally, I like the idea of preserving possible treatments for as long as possible.
Good luck. I've been through this decision making process all to recently and know how difficult it is.
All the best,
Troy
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- May 19, 2013 at 9:30 pm
Thank you both for your advice. I very much appreciate it!! As of now, I don’t qualify because the largest is 8×8 mm and you need 1 cm lung nodule to qualify. I don’t know whether to risk waiting a month to see if I will then be able to join the study. Do you Jim because of your vast knowledge on melanoma know if they can do STRD with IPI if you have 9 lung nodules? Otherwise I have written Dr. Rosenberg to see if I qualify for the ACT study. -
- May 19, 2013 at 9:30 pm
Thank you both for your advice. I very much appreciate it!! As of now, I don’t qualify because the largest is 8×8 mm and you need 1 cm lung nodule to qualify. I don’t know whether to risk waiting a month to see if I will then be able to join the study. Do you Jim because of your vast knowledge on melanoma know if they can do STRD with IPI if you have 9 lung nodules? Otherwise I have written Dr. Rosenberg to see if I qualify for the ACT study. -
- May 19, 2013 at 10:47 pm
Just a thought – what is your oncologist recommending? The results on the Ipi+AntiPd1 study certainly are very exciting. I know it’s hard to watch and wait while the tumors grow and new ones form, and in this disease we all know a clear scan of any kind might not be the same tomorrow.If you start Ipi, you are in a 3 mo commitment and so many people cannot finish the 4 rounds due to complications. Any treatment you do could impact getting into a future trial.
No real advice here, I’ve played the waiting game, I’ve waited for trials and ended up w a brain met, (3rd time was finally the charm – Merck anti PD1 started last week), I did Ipi – no problems but I progressed and it didn’t work.
I know we all wish we could see into the future and know we picked the best path. You are doing great. Research, question, then decide the best you and don’t look back.
Good luck to you!
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- May 19, 2013 at 10:47 pm
Just a thought – what is your oncologist recommending? The results on the Ipi+AntiPd1 study certainly are very exciting. I know it’s hard to watch and wait while the tumors grow and new ones form, and in this disease we all know a clear scan of any kind might not be the same tomorrow.If you start Ipi, you are in a 3 mo commitment and so many people cannot finish the 4 rounds due to complications. Any treatment you do could impact getting into a future trial.
No real advice here, I’ve played the waiting game, I’ve waited for trials and ended up w a brain met, (3rd time was finally the charm – Merck anti PD1 started last week), I did Ipi – no problems but I progressed and it didn’t work.
I know we all wish we could see into the future and know we picked the best path. You are doing great. Research, question, then decide the best you and don’t look back.
Good luck to you!
-
- May 19, 2013 at 10:47 pm
Just a thought – what is your oncologist recommending? The results on the Ipi+AntiPd1 study certainly are very exciting. I know it’s hard to watch and wait while the tumors grow and new ones form, and in this disease we all know a clear scan of any kind might not be the same tomorrow.If you start Ipi, you are in a 3 mo commitment and so many people cannot finish the 4 rounds due to complications. Any treatment you do could impact getting into a future trial.
No real advice here, I’ve played the waiting game, I’ve waited for trials and ended up w a brain met, (3rd time was finally the charm – Merck anti PD1 started last week), I did Ipi – no problems but I progressed and it didn’t work.
I know we all wish we could see into the future and know we picked the best path. You are doing great. Research, question, then decide the best you and don’t look back.
Good luck to you!
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