› Forums › General Melanoma Community › Ipi / Yervoy response! Tumors shrinking.
- This topic has 51 replies, 11 voices, and was last updated 12 years, 8 months ago by
bigb0624.
- Post
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- March 20, 2013 at 11:37 pm
I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.
It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!).
Tina
I went to St Louis today for my first post-ipi PET/CT. Scans show the main tumor shrunk from 3.6cm to 2.1cm. Dr L is very pleased with this response. We will rescan in 2 months. Meanwhile, my endocrine issues are steadying out a little. Prednisone decreased to 20/day.
It is amazing to still be alive, it truly is. I am so thankful. We are rejoicing this fine evening and first day of spring ( even though it is below freezing here in St Louis!).
Tina
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- March 21, 2013 at 12:21 am
Way to go Tina.So very happy seeing your positve post.It is wonderful to be alive.Keep that PMA going strong.Freezing up here in N.E. also.In my prayers.Beat the Beast. Al
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- March 21, 2013 at 12:21 am
Way to go Tina.So very happy seeing your positve post.It is wonderful to be alive.Keep that PMA going strong.Freezing up here in N.E. also.In my prayers.Beat the Beast. Al
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- March 21, 2013 at 12:21 am
Way to go Tina.So very happy seeing your positve post.It is wonderful to be alive.Keep that PMA going strong.Freezing up here in N.E. also.In my prayers.Beat the Beast. Al
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- March 21, 2013 at 12:43 am
Yay! Many congrats and well deserved good news for a truly valiant warrior who has been through so much!Amy
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- March 21, 2013 at 12:43 am
Yay! Many congrats and well deserved good news for a truly valiant warrior who has been through so much!Amy
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- March 21, 2013 at 12:43 am
Yay! Many congrats and well deserved good news for a truly valiant warrior who has been through so much!Amy
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- March 21, 2013 at 2:38 am
That is wonderful news! I’m so happy for you.
Holly -
- March 21, 2013 at 2:38 am
That is wonderful news! I’m so happy for you.
Holly -
- March 21, 2013 at 2:38 am
That is wonderful news! I’m so happy for you.
Holly -
- March 21, 2013 at 8:24 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 8:24 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 8:24 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 8:25 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 8:25 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 8:25 am
Fabulous news!! My husband has had 1 treatment, we are praying !!
When I awake in the middle of the night and see a positive post like yours
it makes my day (plus gets me back to sleep lol).
I noticed in your profile you are a Miami Dolphins fan? we live in fort
lauderdale and are huge fans as well.
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- March 21, 2013 at 10:14 am
Congratulations, Tina! Incredible news. Thanks for starting my day off on such a happy note!
Good luck and God bless.
Brendan
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- March 22, 2013 at 10:28 pm
Tina,
Great news! I had my 3rd infusion on Tues. and i am experiencing a little itching so far. Dr. L is great and we are in great hands. I pray for your continued good results and hope we both hear the R word soon. By the way, winter storm watch for St. Louis on Sunday with 2-4 inches of snow. Has not been a great spring so far. Keep up the great work.
Barry
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- March 22, 2013 at 10:28 pm
Tina,
Great news! I had my 3rd infusion on Tues. and i am experiencing a little itching so far. Dr. L is great and we are in great hands. I pray for your continued good results and hope we both hear the R word soon. By the way, winter storm watch for St. Louis on Sunday with 2-4 inches of snow. Has not been a great spring so far. Keep up the great work.
Barry
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- March 22, 2013 at 10:28 pm
Tina,
Great news! I had my 3rd infusion on Tues. and i am experiencing a little itching so far. Dr. L is great and we are in great hands. I pray for your continued good results and hope we both hear the R word soon. By the way, winter storm watch for St. Louis on Sunday with 2-4 inches of snow. Has not been a great spring so far. Keep up the great work.
Barry
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- March 23, 2013 at 1:32 am
I am very happy to hear of this news also! Congratulations and, like you say, it's amazing how we now appreciate every little thing in every little day to have our loved ones still with us, fighting this horrific disease.
My thoughts and prayers are with you.
Janet Lee
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- March 23, 2013 at 1:32 am
I am very happy to hear of this news also! Congratulations and, like you say, it's amazing how we now appreciate every little thing in every little day to have our loved ones still with us, fighting this horrific disease.
My thoughts and prayers are with you.
Janet Lee
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- March 23, 2013 at 1:32 am
I am very happy to hear of this news also! Congratulations and, like you say, it's amazing how we now appreciate every little thing in every little day to have our loved ones still with us, fighting this horrific disease.
My thoughts and prayers are with you.
Janet Lee
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- March 23, 2013 at 1:29 pm
Tina,
How did you know you had "endocrine" issues (what were your symptoms)? Did you have any other side effects from the IPPI?
Barry
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- March 23, 2013 at 1:50 pm
Barry,
We could absolutely not say enough good about Dr L! I feel so blessed to be able to go there for my care.
You asked about endocrine symptoms and side effects. I had absolutely none after the first tx ( like many people), sometime after the 2nd I developed a fine rash that was somewhat itchy, but really not a big deal at all. It was on my arms, trunk and legs. The day after my 3rd treatment, I got a headache ( rare for me). That headache progressively got worse until it was constant. The main pain was right at the crown of my head, but felt deep, and then it also traveled to my ears and eyes, and sometimes forehead. It caused great light sensitivity ( so that even with my eyes closed if there was a small light on I would get shooting pains in my eyes and head), and at times it caused nausea and vomiting. Pretty bad. I was put on a couple different things to try for the headache and nothing helped one bit. Also, had a brain MRI during that time that was normal. When it was time for my 4th treatment, the headache remained intense. More labs were done and my pituitary hormones were found to be very low ( just the ones from the anterior piruitary affecting the thyroid and adrenals). I also started having diarrhea that day, but only had to take one dose of immodiium.At that point, the 4th treatment was deemed unecessary and I was started on 60mg of prednisone. They are slowly tapering the prednisone, and currently I am down to 20mg. The headache went away the very next morning after starting the prednisone, and the diarrhea went away, as well.YAY! JoAnne has regular conversations with me, and keeps constant updates if I have any problems or changes. I have had a handful of days since starting the ipi that I had pretty good fatigue, but other than that, and the headache, I have felt great!! How are you doing thus far?
We live in SW Indiana, which is 3 – 3 1/2 hrs travel to get there, depending on the traffic at the bridge going over to St Louis. We always stay over the night after appts, and that makes the drive home quite relaxing, as well. FINALLY got to do a little touring around after this last appt and enjoyed an afternoon at the Science museum. We plan to take a couple days at some point and bring the kids over to "see St Louis".
Tina
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- March 23, 2013 at 5:40 pm
Tina,
Thanks for getting back to me. Your explanation was great and i appreciate it. So far after 3 infusions i have had some fatigue and some itching and mild rash. Benadryl & Clairiton have helped. My 4th infusion is April 9th so we will see what happens in the next 2 1/2 weeks as far as side effects.
If you do visit St. Louis i would like to meet you and your family. We have some great attractions here for your kids and you. Our zoo is one of the best (and it is free), we have the Magic House, City Museum, Top of the Arch, etc. and the Cardinals. If you need any assistance with regard to visiting here let me know. By the way, are you near Peru, In.? My ex-wife use to live there.
Have a great day and the best to you,
Barry
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- March 23, 2013 at 5:40 pm
Tina,
Thanks for getting back to me. Your explanation was great and i appreciate it. So far after 3 infusions i have had some fatigue and some itching and mild rash. Benadryl & Clairiton have helped. My 4th infusion is April 9th so we will see what happens in the next 2 1/2 weeks as far as side effects.
If you do visit St. Louis i would like to meet you and your family. We have some great attractions here for your kids and you. Our zoo is one of the best (and it is free), we have the Magic House, City Museum, Top of the Arch, etc. and the Cardinals. If you need any assistance with regard to visiting here let me know. By the way, are you near Peru, In.? My ex-wife use to live there.
Have a great day and the best to you,
Barry
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- March 25, 2013 at 7:15 pm
Wait until the snow melts before coming here. We had 10 inches of snow yesterday and it's spring? When you come to St. Lou let me know. My email is bigb0624@sbcglobal.net.
Stay positive and keep up the good work. I'll tell Joann we have met on the MRF website. Keep up the good work.
Barry
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- March 25, 2013 at 7:15 pm
Wait until the snow melts before coming here. We had 10 inches of snow yesterday and it's spring? When you come to St. Lou let me know. My email is bigb0624@sbcglobal.net.
Stay positive and keep up the good work. I'll tell Joann we have met on the MRF website. Keep up the good work.
Barry
-
- March 25, 2013 at 7:15 pm
Wait until the snow melts before coming here. We had 10 inches of snow yesterday and it's spring? When you come to St. Lou let me know. My email is bigb0624@sbcglobal.net.
Stay positive and keep up the good work. I'll tell Joann we have met on the MRF website. Keep up the good work.
Barry
-
- March 23, 2013 at 5:40 pm
Tina,
Thanks for getting back to me. Your explanation was great and i appreciate it. So far after 3 infusions i have had some fatigue and some itching and mild rash. Benadryl & Clairiton have helped. My 4th infusion is April 9th so we will see what happens in the next 2 1/2 weeks as far as side effects.
If you do visit St. Louis i would like to meet you and your family. We have some great attractions here for your kids and you. Our zoo is one of the best (and it is free), we have the Magic House, City Museum, Top of the Arch, etc. and the Cardinals. If you need any assistance with regard to visiting here let me know. By the way, are you near Peru, In.? My ex-wife use to live there.
Have a great day and the best to you,
Barry
-
- March 23, 2013 at 1:50 pm
Barry,
We could absolutely not say enough good about Dr L! I feel so blessed to be able to go there for my care.
You asked about endocrine symptoms and side effects. I had absolutely none after the first tx ( like many people), sometime after the 2nd I developed a fine rash that was somewhat itchy, but really not a big deal at all. It was on my arms, trunk and legs. The day after my 3rd treatment, I got a headache ( rare for me). That headache progressively got worse until it was constant. The main pain was right at the crown of my head, but felt deep, and then it also traveled to my ears and eyes, and sometimes forehead. It caused great light sensitivity ( so that even with my eyes closed if there was a small light on I would get shooting pains in my eyes and head), and at times it caused nausea and vomiting. Pretty bad. I was put on a couple different things to try for the headache and nothing helped one bit. Also, had a brain MRI during that time that was normal. When it was time for my 4th treatment, the headache remained intense. More labs were done and my pituitary hormones were found to be very low ( just the ones from the anterior piruitary affecting the thyroid and adrenals). I also started having diarrhea that day, but only had to take one dose of immodiium.At that point, the 4th treatment was deemed unecessary and I was started on 60mg of prednisone. They are slowly tapering the prednisone, and currently I am down to 20mg. The headache went away the very next morning after starting the prednisone, and the diarrhea went away, as well.YAY! JoAnne has regular conversations with me, and keeps constant updates if I have any problems or changes. I have had a handful of days since starting the ipi that I had pretty good fatigue, but other than that, and the headache, I have felt great!! How are you doing thus far?
We live in SW Indiana, which is 3 – 3 1/2 hrs travel to get there, depending on the traffic at the bridge going over to St Louis. We always stay over the night after appts, and that makes the drive home quite relaxing, as well. FINALLY got to do a little touring around after this last appt and enjoyed an afternoon at the Science museum. We plan to take a couple days at some point and bring the kids over to "see St Louis".
Tina
-
- March 23, 2013 at 1:50 pm
Barry,
We could absolutely not say enough good about Dr L! I feel so blessed to be able to go there for my care.
You asked about endocrine symptoms and side effects. I had absolutely none after the first tx ( like many people), sometime after the 2nd I developed a fine rash that was somewhat itchy, but really not a big deal at all. It was on my arms, trunk and legs. The day after my 3rd treatment, I got a headache ( rare for me). That headache progressively got worse until it was constant. The main pain was right at the crown of my head, but felt deep, and then it also traveled to my ears and eyes, and sometimes forehead. It caused great light sensitivity ( so that even with my eyes closed if there was a small light on I would get shooting pains in my eyes and head), and at times it caused nausea and vomiting. Pretty bad. I was put on a couple different things to try for the headache and nothing helped one bit. Also, had a brain MRI during that time that was normal. When it was time for my 4th treatment, the headache remained intense. More labs were done and my pituitary hormones were found to be very low ( just the ones from the anterior piruitary affecting the thyroid and adrenals). I also started having diarrhea that day, but only had to take one dose of immodiium.At that point, the 4th treatment was deemed unecessary and I was started on 60mg of prednisone. They are slowly tapering the prednisone, and currently I am down to 20mg. The headache went away the very next morning after starting the prednisone, and the diarrhea went away, as well.YAY! JoAnne has regular conversations with me, and keeps constant updates if I have any problems or changes. I have had a handful of days since starting the ipi that I had pretty good fatigue, but other than that, and the headache, I have felt great!! How are you doing thus far?
We live in SW Indiana, which is 3 – 3 1/2 hrs travel to get there, depending on the traffic at the bridge going over to St Louis. We always stay over the night after appts, and that makes the drive home quite relaxing, as well. FINALLY got to do a little touring around after this last appt and enjoyed an afternoon at the Science museum. We plan to take a couple days at some point and bring the kids over to "see St Louis".
Tina
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