› Forums › General Melanoma Community › Yervoy Reinduction and Medicare
- This topic has 24 replies, 4 voices, and was last updated 11 years, 1 month ago by
awillett1991.
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- March 27, 2013 at 5:51 pm
I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months. After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi. He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi. Have any of you faced a similar
I was at my oncologist's today, and he feels the course of ipi was probably successful given the fact that the one tumor I have has not grown much if at all and, despite having had two brain tumors, there have been no new tumors anywhere over the last two months. After one more set of scans two months from now, if all stays more or less the same (I will have the one tumor removed surgically), he would recommend a reinduction of ipi. He did warn, however, that, as I am on Medicare, that Medicare seems to not pay for a reinduction of ipi. Have any of you faced a similar situation? Was that your take also? Can you think of a path around paying $200,000 or more out of pocket. The University of Michigan Hospitals, not surprisingly, are not going to pick it up.
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- March 27, 2013 at 11:07 pm
Hey buffcody
I'm in similar predicament w / this self pay – out of pocket coverage but concerning another drug.
the Ipi Yervoy predicament: best case scenario I can think of is I have heard of maintenance trials where after you receive four infusions in three months you then receive another infusion every three months – maybe your oncologist can patch you into one of those. I have requested / asked my oncologist and she doesn't think these trials are out there??
Medicare covering FDA approved drug Yervoy
Would your next step be anti PD 1 drug trial ; does medicare participate in drug trials? Many of our cohorts here showing signs of success w / this drug.
all the best, john
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- March 27, 2013 at 11:07 pm
Hey buffcody
I'm in similar predicament w / this self pay – out of pocket coverage but concerning another drug.
the Ipi Yervoy predicament: best case scenario I can think of is I have heard of maintenance trials where after you receive four infusions in three months you then receive another infusion every three months – maybe your oncologist can patch you into one of those. I have requested / asked my oncologist and she doesn't think these trials are out there??
Medicare covering FDA approved drug Yervoy
Would your next step be anti PD 1 drug trial ; does medicare participate in drug trials? Many of our cohorts here showing signs of success w / this drug.
all the best, john
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- March 29, 2013 at 9:45 am
Thanks, John. I'm doing some more thinking now about anti PD1 and seeing if I would qualify for a clinical trial. Since I will not, I hope, have a measurable tumor after the operation next month, I may be even more limited for such a trial, though. Medicare does participate in trials. I'll also look into the maintenance trials.
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- March 29, 2013 at 9:45 am
Thanks, John. I'm doing some more thinking now about anti PD1 and seeing if I would qualify for a clinical trial. Since I will not, I hope, have a measurable tumor after the operation next month, I may be even more limited for such a trial, though. Medicare does participate in trials. I'll also look into the maintenance trials.
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- March 29, 2013 at 9:45 am
Thanks, John. I'm doing some more thinking now about anti PD1 and seeing if I would qualify for a clinical trial. Since I will not, I hope, have a measurable tumor after the operation next month, I may be even more limited for such a trial, though. Medicare does participate in trials. I'll also look into the maintenance trials.
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- March 27, 2013 at 11:07 pm
Hey buffcody
I'm in similar predicament w / this self pay – out of pocket coverage but concerning another drug.
the Ipi Yervoy predicament: best case scenario I can think of is I have heard of maintenance trials where after you receive four infusions in three months you then receive another infusion every three months – maybe your oncologist can patch you into one of those. I have requested / asked my oncologist and she doesn't think these trials are out there??
Medicare covering FDA approved drug Yervoy
Would your next step be anti PD 1 drug trial ; does medicare participate in drug trials? Many of our cohorts here showing signs of success w / this drug.
all the best, john
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- March 29, 2013 at 2:59 am
Not sure of payments but they are always an issue even with insurance. My wife is a patient of Dr. Lao's at U of M. We drive from NC for Dr. Lao's care just wanted to say he is a great Dr. to have in dealing with Melanoma and so is U of M cancer Center. My wife is taking ipi/yervoy now.
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- March 29, 2013 at 2:59 am
Not sure of payments but they are always an issue even with insurance. My wife is a patient of Dr. Lao's at U of M. We drive from NC for Dr. Lao's care just wanted to say he is a great Dr. to have in dealing with Melanoma and so is U of M cancer Center. My wife is taking ipi/yervoy now.
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- March 29, 2013 at 2:59 am
Not sure of payments but they are always an issue even with insurance. My wife is a patient of Dr. Lao's at U of M. We drive from NC for Dr. Lao's care just wanted to say he is a great Dr. to have in dealing with Melanoma and so is U of M cancer Center. My wife is taking ipi/yervoy now.
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- March 29, 2013 at 1:31 pm
Congrats on your success w Ipi! I had a weird MRI this week – both tumors still there but showing a tiny bit of extra edema worse than prior scan ( finished Ipi 12/1) like a mm “growth” each, but both smaller than when found, and wait until June to confirm whether its Ipi reaction, or they believe radiation necrosis. And thank God nothing new.Call other hospitals and get them to negotiate their rate. Vandy charged my ins $200k but I had a friend here in Nashville negotiate w St Thomas and he got them down to $80k for all 4 infusions., Ipi still showing effects on my lymphocytes plus other lovely side effects. How will they know yours has stopped working or you need more? Is it the new met? Just curious. I finished 12/1.
Regards,
Amy-
- March 29, 2013 at 1:52 pm
Thanks, Amy. All in all, I thought the news was good, though I am not looking forward to the operation on my left buttock met. As for the two brain tumors, one has disappeared. The other seems to be behaving like yours. The decision is to do a craniotomy in two months unless it is shrinking or gone. My oncologist does think it is a treatment effect but would rather be safe than sorry. As for the continued effects of IPI, which I finished January 2, he believes it was working because I have no new tumors. Again, no certainty. I wish my absolute lymphocyte count were up. It's been pretty steady. Apparently C Reactive Protein may be another marker. However, I am sure continuing to get skin side effects. Not only rash and itching but things that appear like small bruises that go from red to purple to black and disappear. The onc thinks they are reactions to cortisone cream. I don't . I haven't used that much of it. I think it is the immune system at work. Anyone have these reactions during and after ipi?
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- March 29, 2013 at 1:52 pm
Thanks, Amy. All in all, I thought the news was good, though I am not looking forward to the operation on my left buttock met. As for the two brain tumors, one has disappeared. The other seems to be behaving like yours. The decision is to do a craniotomy in two months unless it is shrinking or gone. My oncologist does think it is a treatment effect but would rather be safe than sorry. As for the continued effects of IPI, which I finished January 2, he believes it was working because I have no new tumors. Again, no certainty. I wish my absolute lymphocyte count were up. It's been pretty steady. Apparently C Reactive Protein may be another marker. However, I am sure continuing to get skin side effects. Not only rash and itching but things that appear like small bruises that go from red to purple to black and disappear. The onc thinks they are reactions to cortisone cream. I don't . I haven't used that much of it. I think it is the immune system at work. Anyone have these reactions during and after ipi?
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- March 29, 2013 at 1:52 pm
Thanks, Amy. All in all, I thought the news was good, though I am not looking forward to the operation on my left buttock met. As for the two brain tumors, one has disappeared. The other seems to be behaving like yours. The decision is to do a craniotomy in two months unless it is shrinking or gone. My oncologist does think it is a treatment effect but would rather be safe than sorry. As for the continued effects of IPI, which I finished January 2, he believes it was working because I have no new tumors. Again, no certainty. I wish my absolute lymphocyte count were up. It's been pretty steady. Apparently C Reactive Protein may be another marker. However, I am sure continuing to get skin side effects. Not only rash and itching but things that appear like small bruises that go from red to purple to black and disappear. The onc thinks they are reactions to cortisone cream. I don't . I haven't used that much of it. I think it is the immune system at work. Anyone have these reactions during and after ipi?
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- March 29, 2013 at 3:11 pm
My ALC bounces all over the place. It was .94 this week, but was .33 a month earlier. What is “good” supposed to Be?I’m also on Zel which muddies the waters. I plan to ask about this at my next appt. I have remaining endocrine issues which they think are probably permanent plus fatigue, but nothing skin related. Also trapped on prednisone. Cannot taper off yet.
When did you finish?
Amy
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- March 29, 2013 at 3:11 pm
My ALC bounces all over the place. It was .94 this week, but was .33 a month earlier. What is “good” supposed to Be?I’m also on Zel which muddies the waters. I plan to ask about this at my next appt. I have remaining endocrine issues which they think are probably permanent plus fatigue, but nothing skin related. Also trapped on prednisone. Cannot taper off yet.
When did you finish?
Amy
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- March 29, 2013 at 7:21 pm
Normal range for ALC is between 1 and 4. Mine has run between 1 and 1.6 throughout my ipi infusions and after as well with no clear pattern up or down since before I began on October 30 and March 27, almost three months after my last infusion. I have no idea what my C Reactive Protein is, as they did not measure that. I have read that Jedd Wolchok at Sloan Kettering wrote that he feels that a level of 2.5 is predictive that ipi is working. I'm sure that is not an infallible sign one way or the other. I have been fortunate that, except at the time of the last infusion when I showed mild anemia in 3 measures., all my blood measurements have falllen in the normal range.
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- March 29, 2013 at 7:21 pm
Normal range for ALC is between 1 and 4. Mine has run between 1 and 1.6 throughout my ipi infusions and after as well with no clear pattern up or down since before I began on October 30 and March 27, almost three months after my last infusion. I have no idea what my C Reactive Protein is, as they did not measure that. I have read that Jedd Wolchok at Sloan Kettering wrote that he feels that a level of 2.5 is predictive that ipi is working. I'm sure that is not an infallible sign one way or the other. I have been fortunate that, except at the time of the last infusion when I showed mild anemia in 3 measures., all my blood measurements have falllen in the normal range.
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- March 31, 2013 at 1:50 am
Interesting info, thanks Buff. Nothing about me or my Mel is “normal” lol! Except, my LDH. Grateful to God & my drs and nurses at Vandy for keeping me around and mostly functional this long. I don’t know how deep your met is, but I had my entire rt cheek detached and reattached so they could scoop out a pelvic tumor. It wasn’t as bad as I thought and nowhere nearly as difficult a recovery as my lymph node stuff. I was off crutches quickly even with the bone reconstruction.I told my surgeon right beforehand, “just so you know, I usually make a guy buy me dinner first!”
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- March 31, 2013 at 1:50 am
Interesting info, thanks Buff. Nothing about me or my Mel is “normal” lol! Except, my LDH. Grateful to God & my drs and nurses at Vandy for keeping me around and mostly functional this long. I don’t know how deep your met is, but I had my entire rt cheek detached and reattached so they could scoop out a pelvic tumor. It wasn’t as bad as I thought and nowhere nearly as difficult a recovery as my lymph node stuff. I was off crutches quickly even with the bone reconstruction.I told my surgeon right beforehand, “just so you know, I usually make a guy buy me dinner first!”
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- March 31, 2013 at 1:50 am
Interesting info, thanks Buff. Nothing about me or my Mel is “normal” lol! Except, my LDH. Grateful to God & my drs and nurses at Vandy for keeping me around and mostly functional this long. I don’t know how deep your met is, but I had my entire rt cheek detached and reattached so they could scoop out a pelvic tumor. It wasn’t as bad as I thought and nowhere nearly as difficult a recovery as my lymph node stuff. I was off crutches quickly even with the bone reconstruction.I told my surgeon right beforehand, “just so you know, I usually make a guy buy me dinner first!”
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- March 29, 2013 at 7:21 pm
Normal range for ALC is between 1 and 4. Mine has run between 1 and 1.6 throughout my ipi infusions and after as well with no clear pattern up or down since before I began on October 30 and March 27, almost three months after my last infusion. I have no idea what my C Reactive Protein is, as they did not measure that. I have read that Jedd Wolchok at Sloan Kettering wrote that he feels that a level of 2.5 is predictive that ipi is working. I'm sure that is not an infallible sign one way or the other. I have been fortunate that, except at the time of the last infusion when I showed mild anemia in 3 measures., all my blood measurements have falllen in the normal range.
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- March 29, 2013 at 3:11 pm
My ALC bounces all over the place. It was .94 this week, but was .33 a month earlier. What is “good” supposed to Be?I’m also on Zel which muddies the waters. I plan to ask about this at my next appt. I have remaining endocrine issues which they think are probably permanent plus fatigue, but nothing skin related. Also trapped on prednisone. Cannot taper off yet.
When did you finish?
Amy
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- March 29, 2013 at 1:31 pm
Congrats on your success w Ipi! I had a weird MRI this week – both tumors still there but showing a tiny bit of extra edema worse than prior scan ( finished Ipi 12/1) like a mm “growth” each, but both smaller than when found, and wait until June to confirm whether its Ipi reaction, or they believe radiation necrosis. And thank God nothing new.Call other hospitals and get them to negotiate their rate. Vandy charged my ins $200k but I had a friend here in Nashville negotiate w St Thomas and he got them down to $80k for all 4 infusions., Ipi still showing effects on my lymphocytes plus other lovely side effects. How will they know yours has stopped working or you need more? Is it the new met? Just curious. I finished 12/1.
Regards,
Amy -
- March 29, 2013 at 1:31 pm
Congrats on your success w Ipi! I had a weird MRI this week – both tumors still there but showing a tiny bit of extra edema worse than prior scan ( finished Ipi 12/1) like a mm “growth” each, but both smaller than when found, and wait until June to confirm whether its Ipi reaction, or they believe radiation necrosis. And thank God nothing new.Call other hospitals and get them to negotiate their rate. Vandy charged my ins $200k but I had a friend here in Nashville negotiate w St Thomas and he got them down to $80k for all 4 infusions., Ipi still showing effects on my lymphocytes plus other lovely side effects. How will they know yours has stopped working or you need more? Is it the new met? Just curious. I finished 12/1.
Regards,
Amy
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