› Forums › General Melanoma Community › IPI Completed Jan 8 need guidance!
- This topic has 24 replies, 7 voices, and was last updated 12 years, 1 month ago by
o2bcheri.
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- February 27, 2012 at 8:02 pm
I completed my 4th dose January 8. At my 2 wk follow up appt I was so anemic it required a double transfusion and I now am on an iron supplement. This happen to anyone else? Also, as I am the only IPI patient in my area (upstate NY) and only the 5th melanoma patient ever, my onc.I completed my 4th dose January 8. At my 2 wk follow up appt I was so anemic it required a double transfusion and I now am on an iron supplement. This happen to anyone else? Also, as I am the only IPI patient in my area (upstate NY) and only the 5th melanoma patient ever, my onc. Is flying blind, although he is meant to be in contact w the specialist at Roswell in Buffalo (who we spoke to this morning and for the second time, can’t find that they have rec’d scans…) My first scans showed no disease in any organs, but he couldn’t tell me if the lesions in my abdomen were even lesions anymore, maybe cysts, and they couldn’t really read the bowel. I am rapidly losing confidence as I was diagnosed in 08 and have been thru Interferon as well as IL2 this past summer. Any advice will be greatly appreciated. I was originally told IPI was a “one-shot” deal and now I read of those of you that are rein ducted. HELP!!! I am beginning to feel these people are just not on top of my case. 53years old with 5children , 2 grandchildren and a new granddaughter literally any second now! I’m a fighter and NOT ready to pack it in!!!!
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- February 27, 2012 at 8:12 pm
do you have someone in your family that goes with you and can keep them in line and act as your advocate? or a social worker at the hospital you go to?
as for the next step…read my thread below
boots
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- February 27, 2012 at 8:12 pm
do you have someone in your family that goes with you and can keep them in line and act as your advocate? or a social worker at the hospital you go to?
as for the next step…read my thread below
boots
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- February 27, 2012 at 9:14 pm
I do, boots, thanks! My husband, daughters, or one of my parents is always with me. And I’m relinquishing to my proxies these days, because I only remember about half of what they tell me. -
- February 27, 2012 at 9:14 pm
I do, boots, thanks! My husband, daughters, or one of my parents is always with me. And I’m relinquishing to my proxies these days, because I only remember about half of what they tell me. -
- February 27, 2012 at 9:14 pm
I do, boots, thanks! My husband, daughters, or one of my parents is always with me. And I’m relinquishing to my proxies these days, because I only remember about half of what they tell me.
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- February 27, 2012 at 8:12 pm
do you have someone in your family that goes with you and can keep them in line and act as your advocate? or a social worker at the hospital you go to?
as for the next step…read my thread below
boots
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- February 27, 2012 at 9:27 pm
I fully understand you concern. The reinduction of Ippi is a fairly new thing, so I am not surprised you were told in the beginning it was a one time thing. However, I would recommed you get yourself to a melanoma center. The closest one I found is listed below. I live in rural Nevada and have to fly 800 miles to get to a Melanoma center, I am so grateful to my dermatologist that he recommended this.
Dartmouth-Hitchcock Medical Center
Norris Cotton Cancer Center
Melanoma Clinical Oncology Group
1 Medical Center Drive
Lebanon, NH 03756
Phone: (603) 650-5534
Fax: (603) 650-7791 -
- February 27, 2012 at 9:27 pm
I fully understand you concern. The reinduction of Ippi is a fairly new thing, so I am not surprised you were told in the beginning it was a one time thing. However, I would recommed you get yourself to a melanoma center. The closest one I found is listed below. I live in rural Nevada and have to fly 800 miles to get to a Melanoma center, I am so grateful to my dermatologist that he recommended this.
Dartmouth-Hitchcock Medical Center
Norris Cotton Cancer Center
Melanoma Clinical Oncology Group
1 Medical Center Drive
Lebanon, NH 03756
Phone: (603) 650-5534
Fax: (603) 650-7791 -
- February 27, 2012 at 9:27 pm
I fully understand you concern. The reinduction of Ippi is a fairly new thing, so I am not surprised you were told in the beginning it was a one time thing. However, I would recommed you get yourself to a melanoma center. The closest one I found is listed below. I live in rural Nevada and have to fly 800 miles to get to a Melanoma center, I am so grateful to my dermatologist that he recommended this.
Dartmouth-Hitchcock Medical Center
Norris Cotton Cancer Center
Melanoma Clinical Oncology Group
1 Medical Center Drive
Lebanon, NH 03756
Phone: (603) 650-5534
Fax: (603) 650-7791 -
- February 28, 2012 at 1:25 am
Hi, I understand your situation. I have had a very good response with IPI,but had to go on blood thinners because of a cardiac issue (stent put in this past July). Almost immediately, I developed severe anemia (down to 8.0 hematocrit) and had to have 2 units infusion, and taken off the Plavix. They did an upper and lower GI endoscopy, which showed 4 or 5 melanoma nodes in my duodenum. These were too small to see with a CT scan. I was taken off Plavix right away, put on iron supplements, and am back up to a reasonable level (about 11.5 hematocrit). Doing fine otherwise, and now on IPI reinduction, waiting to see the results in 3 weeks.
So my strong advice to you is to get an endoscopy to see if you're bleeding in your GI tract. Also,I would adivise you get yourself to a center of excellence in melanoma. Roswell is known as a center for IL-2, which I absolutely hated, and I'm wondering if you can get down to Memorial Sloan Kettering in NYC. They're a major center of excellence and great care. I'm at Yale, which I love. The other great option in the northeast is Boston/Harvard and Dana Farber.
Best,
Jon
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- February 28, 2012 at 2:00 am
Hi,
When I first did ipi about 9 months ago, I was told it was a 1-shot deal. I guess the thinking has changed. Ipi is a strong drug and I strongly advocate being one of many at a melanoma center of excellence where all the docs know exactly how to treat all the possible side-effects. I highly recommend Sloan, where I am treated. When I was on IL2 at Yale new haven, (Sloan doesn’t do IL2) we drove the 2+ hours and my docs from both places were in constant contact. I can’t say enough about the docs at both hospitals.
All the best ,
karen -
- February 28, 2012 at 2:00 am
Hi,
When I first did ipi about 9 months ago, I was told it was a 1-shot deal. I guess the thinking has changed. Ipi is a strong drug and I strongly advocate being one of many at a melanoma center of excellence where all the docs know exactly how to treat all the possible side-effects. I highly recommend Sloan, where I am treated. When I was on IL2 at Yale new haven, (Sloan doesn’t do IL2) we drove the 2+ hours and my docs from both places were in constant contact. I can’t say enough about the docs at both hospitals.
All the best ,
karen -
- February 28, 2012 at 2:00 am
Hi,
When I first did ipi about 9 months ago, I was told it was a 1-shot deal. I guess the thinking has changed. Ipi is a strong drug and I strongly advocate being one of many at a melanoma center of excellence where all the docs know exactly how to treat all the possible side-effects. I highly recommend Sloan, where I am treated. When I was on IL2 at Yale new haven, (Sloan doesn’t do IL2) we drove the 2+ hours and my docs from both places were in constant contact. I can’t say enough about the docs at both hospitals.
All the best ,
karen
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- February 28, 2012 at 1:25 am
Hi, I understand your situation. I have had a very good response with IPI,but had to go on blood thinners because of a cardiac issue (stent put in this past July). Almost immediately, I developed severe anemia (down to 8.0 hematocrit) and had to have 2 units infusion, and taken off the Plavix. They did an upper and lower GI endoscopy, which showed 4 or 5 melanoma nodes in my duodenum. These were too small to see with a CT scan. I was taken off Plavix right away, put on iron supplements, and am back up to a reasonable level (about 11.5 hematocrit). Doing fine otherwise, and now on IPI reinduction, waiting to see the results in 3 weeks.
So my strong advice to you is to get an endoscopy to see if you're bleeding in your GI tract. Also,I would adivise you get yourself to a center of excellence in melanoma. Roswell is known as a center for IL-2, which I absolutely hated, and I'm wondering if you can get down to Memorial Sloan Kettering in NYC. They're a major center of excellence and great care. I'm at Yale, which I love. The other great option in the northeast is Boston/Harvard and Dana Farber.
Best,
Jon
-
- February 28, 2012 at 1:25 am
Hi, I understand your situation. I have had a very good response with IPI,but had to go on blood thinners because of a cardiac issue (stent put in this past July). Almost immediately, I developed severe anemia (down to 8.0 hematocrit) and had to have 2 units infusion, and taken off the Plavix. They did an upper and lower GI endoscopy, which showed 4 or 5 melanoma nodes in my duodenum. These were too small to see with a CT scan. I was taken off Plavix right away, put on iron supplements, and am back up to a reasonable level (about 11.5 hematocrit). Doing fine otherwise, and now on IPI reinduction, waiting to see the results in 3 weeks.
So my strong advice to you is to get an endoscopy to see if you're bleeding in your GI tract. Also,I would adivise you get yourself to a center of excellence in melanoma. Roswell is known as a center for IL-2, which I absolutely hated, and I'm wondering if you can get down to Memorial Sloan Kettering in NYC. They're a major center of excellence and great care. I'm at Yale, which I love. The other great option in the northeast is Boston/Harvard and Dana Farber.
Best,
Jon
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- February 28, 2012 at 12:01 pm
Hi Kim! I'm not sure if you remember me, but my husband Dave did IL-2 the same time as you at Roswell. I just wanted to let you know that Roswell is also participating in the MDX-1105 trial, which Dave may have to look into. You may want to have your onc contact Khushalani, and he may be able to give some insight into the IPI re-introduction as well.
You have to push Roswell – get the number for the nurses (ask for Tammy or Karen) if you can't get through to Khush. They'll get the ball rolling for you.
Best wishes,
Maria
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- February 28, 2012 at 12:01 pm
Hi Kim! I'm not sure if you remember me, but my husband Dave did IL-2 the same time as you at Roswell. I just wanted to let you know that Roswell is also participating in the MDX-1105 trial, which Dave may have to look into. You may want to have your onc contact Khushalani, and he may be able to give some insight into the IPI re-introduction as well.
You have to push Roswell – get the number for the nurses (ask for Tammy or Karen) if you can't get through to Khush. They'll get the ball rolling for you.
Best wishes,
Maria
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- February 28, 2012 at 12:15 pm
Hey girl!! Of course I remember you well and think of you often! Hope things are as good as they can be! IL2 failed miserably w me… We spoke with Tammy yesterday in fact, and she is trying to track down my scans from last month. I’m starting to wrap my head around where we go next. Thanks to this forum, I’m FINALLY getting some really good direction! -
- February 28, 2012 at 12:15 pm
Hey girl!! Of course I remember you well and think of you often! Hope things are as good as they can be! IL2 failed miserably w me… We spoke with Tammy yesterday in fact, and she is trying to track down my scans from last month. I’m starting to wrap my head around where we go next. Thanks to this forum, I’m FINALLY getting some really good direction! -
- February 28, 2012 at 6:18 pm
http://www.ncrf.org go there… read the testimonials…
i can't help but spread the word…. if i had cancer.. i would call Fred…
i called him for myself… he is amazing.. helpful and brilliant…
amazing testimonials… healings daily…
xxxx
-
- February 28, 2012 at 6:18 pm
http://www.ncrf.org go there… read the testimonials…
i can't help but spread the word…. if i had cancer.. i would call Fred…
i called him for myself… he is amazing.. helpful and brilliant…
amazing testimonials… healings daily…
xxxx
-
- February 28, 2012 at 6:18 pm
http://www.ncrf.org go there… read the testimonials…
i can't help but spread the word…. if i had cancer.. i would call Fred…
i called him for myself… he is amazing.. helpful and brilliant…
amazing testimonials… healings daily…
xxxx
-
- February 28, 2012 at 12:15 pm
Hey girl!! Of course I remember you well and think of you often! Hope things are as good as they can be! IL2 failed miserably w me… We spoke with Tammy yesterday in fact, and she is trying to track down my scans from last month. I’m starting to wrap my head around where we go next. Thanks to this forum, I’m FINALLY getting some really good direction!
-
- February 28, 2012 at 12:01 pm
Hi Kim! I'm not sure if you remember me, but my husband Dave did IL-2 the same time as you at Roswell. I just wanted to let you know that Roswell is also participating in the MDX-1105 trial, which Dave may have to look into. You may want to have your onc contact Khushalani, and he may be able to give some insight into the IPI re-introduction as well.
You have to push Roswell – get the number for the nurses (ask for Tammy or Karen) if you can't get through to Khush. They'll get the ball rolling for you.
Best wishes,
Maria
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