› Forums › General Melanoma Community › New met on iliac
- This topic has 12 replies, 3 voices, and was last updated 11 years, 11 months ago by
mark1101.
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- December 20, 2013 at 6:38 pm
Got the results of my last PET scan. They noted a small (less the 1 cm) shadow on my right posterior iliac and ordered a biopsy. The biopsy confirmed a melona met on the bone. My onc is suggesting we postpone treatment of this for a mont or so, take anothe scan see what changes occur. If it is smaller or gone, do nothing. Apparently Ipi is noted for having a delayed reaction effect on mets sometimes. If it is the same, go in surgically and kill it with a hot or cold needle at the surgeon's recommendation. If it has enlarged or spread to other sites, then we are considering IL-2 HD. I am considered of good general health and good likely tolerate this treatment with high probability of backing the melanoma off.
Anyone else experienced a similar set of choices…how did it go for you. Also anyone familiar wtih IL-2 HD and its benefits relative to the side effects. How did you have it administered?
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- December 20, 2013 at 7:55 pm
I assume that you are now going to the Seidman Cancer Center in Cleveland. They are an NCI Cancer Center of Excellence. Once you hit Stage IV, having a team that specializes in melanoma is very important, so that's great.
What your doctor recommended makes sense to me. Clearly, the ipi is working; you finished your last infusion in May and this is the first time you see something of concern so the ipi must have been doing something. With more time the ipi effect might get even better. So it makes sense to wait a few weeks and see if the lesion gets bigger or smaller before deciding what to do next.
If it gets bigger, you will have some decisions to make. Personally, I would always want a single tumor to be surgically removed if possible. Or zapped with stereotactic radiosurgery (Gamma Knife or Cyber Knife). Then follow up with systemic treatment if your doctor recommends it.
If you can't have or don't want surgery, do you qualify for any anti-PD1 or anti-PDL1 clinical trials? Those seem to be working better than ipi does. You might check into that. Since you already had ipi, your choices will be limited.
Lastly, if you think that IL-2 is your best option, there is some indication that it might help. A study was published just last week that showed that ipi + IL-2 gives a partial to complete response in 25% of patients and the response is long-lasting (see: http://clincancerres.aacrjournals.org/content/18/7/2039 ). And the autoimmune side effects were not any worse than for ipi alone. You might want to get a "booster" of one more ipi infusion before you start the IL-2, so discuss that with your doctor.
IL-2 is a very rough treatment but the side effects don't last long. You really need to be treated in an ICU or a special facilitly set up specifically for IL-2 administration. Hopefully, Seidman has something like that available.
Good luck and please do keep us posted!
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- December 26, 2013 at 8:20 pm
Hi Paul,
Yes I am going to Seidman. You have given me some options to consider. I am very interested to see the results of my next PET to see how this new met is changing. I understand Ipi can continue residually for some time after treatment. My referring onc was very upbeat on IL-2. Seidman is equipped for this treatment and she believed my health other than melanoma to be very good for withstanding the effects of IL-2. I will look into the options of anti PD-1 or PDL1 trials. Have a read a good deal about these. Am also waiting to hear the results from my BRAF test to see if I am a candidate for some of the targeted drugs a mutation opens the door to.
Thanks again,
Mark
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- December 26, 2013 at 8:20 pm
Hi Paul,
Yes I am going to Seidman. You have given me some options to consider. I am very interested to see the results of my next PET to see how this new met is changing. I understand Ipi can continue residually for some time after treatment. My referring onc was very upbeat on IL-2. Seidman is equipped for this treatment and she believed my health other than melanoma to be very good for withstanding the effects of IL-2. I will look into the options of anti PD-1 or PDL1 trials. Have a read a good deal about these. Am also waiting to hear the results from my BRAF test to see if I am a candidate for some of the targeted drugs a mutation opens the door to.
Thanks again,
Mark
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- December 26, 2013 at 8:20 pm
Hi Paul,
Yes I am going to Seidman. You have given me some options to consider. I am very interested to see the results of my next PET to see how this new met is changing. I understand Ipi can continue residually for some time after treatment. My referring onc was very upbeat on IL-2. Seidman is equipped for this treatment and she believed my health other than melanoma to be very good for withstanding the effects of IL-2. I will look into the options of anti PD-1 or PDL1 trials. Have a read a good deal about these. Am also waiting to hear the results from my BRAF test to see if I am a candidate for some of the targeted drugs a mutation opens the door to.
Thanks again,
Mark
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- December 20, 2013 at 7:55 pm
I assume that you are now going to the Seidman Cancer Center in Cleveland. They are an NCI Cancer Center of Excellence. Once you hit Stage IV, having a team that specializes in melanoma is very important, so that's great.
What your doctor recommended makes sense to me. Clearly, the ipi is working; you finished your last infusion in May and this is the first time you see something of concern so the ipi must have been doing something. With more time the ipi effect might get even better. So it makes sense to wait a few weeks and see if the lesion gets bigger or smaller before deciding what to do next.
If it gets bigger, you will have some decisions to make. Personally, I would always want a single tumor to be surgically removed if possible. Or zapped with stereotactic radiosurgery (Gamma Knife or Cyber Knife). Then follow up with systemic treatment if your doctor recommends it.
If you can't have or don't want surgery, do you qualify for any anti-PD1 or anti-PDL1 clinical trials? Those seem to be working better than ipi does. You might check into that. Since you already had ipi, your choices will be limited.
Lastly, if you think that IL-2 is your best option, there is some indication that it might help. A study was published just last week that showed that ipi + IL-2 gives a partial to complete response in 25% of patients and the response is long-lasting (see: http://clincancerres.aacrjournals.org/content/18/7/2039 ). And the autoimmune side effects were not any worse than for ipi alone. You might want to get a "booster" of one more ipi infusion before you start the IL-2, so discuss that with your doctor.
IL-2 is a very rough treatment but the side effects don't last long. You really need to be treated in an ICU or a special facilitly set up specifically for IL-2 administration. Hopefully, Seidman has something like that available.
Good luck and please do keep us posted!
-
- December 20, 2013 at 7:55 pm
I assume that you are now going to the Seidman Cancer Center in Cleveland. They are an NCI Cancer Center of Excellence. Once you hit Stage IV, having a team that specializes in melanoma is very important, so that's great.
What your doctor recommended makes sense to me. Clearly, the ipi is working; you finished your last infusion in May and this is the first time you see something of concern so the ipi must have been doing something. With more time the ipi effect might get even better. So it makes sense to wait a few weeks and see if the lesion gets bigger or smaller before deciding what to do next.
If it gets bigger, you will have some decisions to make. Personally, I would always want a single tumor to be surgically removed if possible. Or zapped with stereotactic radiosurgery (Gamma Knife or Cyber Knife). Then follow up with systemic treatment if your doctor recommends it.
If you can't have or don't want surgery, do you qualify for any anti-PD1 or anti-PDL1 clinical trials? Those seem to be working better than ipi does. You might check into that. Since you already had ipi, your choices will be limited.
Lastly, if you think that IL-2 is your best option, there is some indication that it might help. A study was published just last week that showed that ipi + IL-2 gives a partial to complete response in 25% of patients and the response is long-lasting (see: http://clincancerres.aacrjournals.org/content/18/7/2039 ). And the autoimmune side effects were not any worse than for ipi alone. You might want to get a "booster" of one more ipi infusion before you start the IL-2, so discuss that with your doctor.
IL-2 is a very rough treatment but the side effects don't last long. You really need to be treated in an ICU or a special facilitly set up specifically for IL-2 administration. Hopefully, Seidman has something like that available.
Good luck and please do keep us posted!
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- December 21, 2013 at 2:58 am
I was dx with a small tumor in my pelvis in 2011. I had it surgically resected and it was replaced with bone screws, bone cement and a plate. The only lingering effect I have is trying to remember to fill it out on my MRI forms. I certainly cannot say the same for the systemic treatments or other surgeries. I'm not familiar at all with the hot or cold needle you speak of but suggest you use this time in between to speak to an orthopedic oncology surgeon.
Amy
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- December 21, 2013 at 2:58 am
I was dx with a small tumor in my pelvis in 2011. I had it surgically resected and it was replaced with bone screws, bone cement and a plate. The only lingering effect I have is trying to remember to fill it out on my MRI forms. I certainly cannot say the same for the systemic treatments or other surgeries. I'm not familiar at all with the hot or cold needle you speak of but suggest you use this time in between to speak to an orthopedic oncology surgeon.
Amy
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- December 21, 2013 at 2:58 am
I was dx with a small tumor in my pelvis in 2011. I had it surgically resected and it was replaced with bone screws, bone cement and a plate. The only lingering effect I have is trying to remember to fill it out on my MRI forms. I certainly cannot say the same for the systemic treatments or other surgeries. I'm not familiar at all with the hot or cold needle you speak of but suggest you use this time in between to speak to an orthopedic oncology surgeon.
Amy
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