› Forums › General Melanoma Community › Good Endocrinopathy! No 4th ipi / Yervoy. Scans 3/20.
- This topic has 12 replies, 4 voices, and was last updated 12 years ago by
Tina D.
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- March 8, 2013 at 1:54 pm
Just an update on what has been going on with me. One day after my third ipi treatment, I developed a headache ( which is an unusual thing for me). The first few days I figured maybe it was sinus related, but after the 5th day, hubby insisted I call St Louis. Over the next 23 days, it quickly worsened, even to the point of extreme light sensitivity and nausea and vomiting. Nothing I took helped at all. It became a 24 hr/day thing. During that course of time, an MRI of my brain was done and it was negative.
Just an update on what has been going on with me. One day after my third ipi treatment, I developed a headache ( which is an unusual thing for me). The first few days I figured maybe it was sinus related, but after the 5th day, hubby insisted I call St Louis. Over the next 23 days, it quickly worsened, even to the point of extreme light sensitivity and nausea and vomiting. Nothing I took helped at all. It became a 24 hr/day thing. During that course of time, an MRI of my brain was done and it was negative. When I went for my 4th ipi treatment, the Dr decided not to go ahead with it until he ruled out serious side effects. Labs done that day revealed endocrinopathy of my pituitary, and it was concluded that was the cause of the headache. I was started on 60 mg of prednisone and by the following day, the horrible headache was history!! YAY! As more labs came in, I received a call saying that they would not be giving me the 4th treatment at all. I was disappointed ( I was very geared up to "make it through all 4" and this felt like failing, I suppose), but the nurse quickly explained… "But, you don't NEED it!" The goal of the ipi is to get your immune system ramped up, and yours IS now ramped up. The endocrinopathy is an immune response. We dont want to get it any more ramped up than it is right now, or you can end up with serious autoimmune problems." . So, my labs are being monitored here at home in Indiana ( this has apparently affected the pituitary hormones that stimulate the thyroid and adrenals) . I may be started on Synthroid at a future date, just depending on the labs. I am being slowly tapered off the prednisone… now taking 30 mg/day. So far, doing great. I have been feeling wonderful and enjoying very busy days here at home. My first post-ipi PET scan is ordered for 3/20. Leaving it in God's hands and trying to always focus on the blessing of this very day with my family. I am sure the scanxiety will inevitably come as the day draws closer, but for now, I have been blissfully busy and feeling very well. I have not been on here much lately and apologize for taking so long to update. I am nearly constantly aware, however of the daily struggles faced by so many on here…. even on these days when I am feeling so well.
Thanking God for the day,
Tina
- Replies
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- March 8, 2013 at 2:24 pm
Nice to see your post.Really so much positive news after such a rough month.Keep that PMA and your faith for you inspire me and so many more.Beat the Beast. Al
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- March 8, 2013 at 2:24 pm
Nice to see your post.Really so much positive news after such a rough month.Keep that PMA and your faith for you inspire me and so many more.Beat the Beast. Al
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- March 8, 2013 at 2:24 pm
Nice to see your post.Really so much positive news after such a rough month.Keep that PMA and your faith for you inspire me and so many more.Beat the Beast. Al
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- March 9, 2013 at 1:54 am
RE: "Leaving it in God's hands"
Since you are leaving it in God's hands perhaps it would be beneficial if you read and follow
the info in the book "The Maker's Diet". Give God some help!
also see the "Curing cancer from the inside out" DVD which includes a stage IV melanoma patient.
I would strongly suggest having your blood tested for a vitamin D-3 deficiency.
Since you live in the Midwest I would be willing to bet that you are very deficient.
Best wishes,
Gene
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- March 9, 2013 at 1:54 am
RE: "Leaving it in God's hands"
Since you are leaving it in God's hands perhaps it would be beneficial if you read and follow
the info in the book "The Maker's Diet". Give God some help!
also see the "Curing cancer from the inside out" DVD which includes a stage IV melanoma patient.
I would strongly suggest having your blood tested for a vitamin D-3 deficiency.
Since you live in the Midwest I would be willing to bet that you are very deficient.
Best wishes,
Gene
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- March 9, 2013 at 1:54 am
RE: "Leaving it in God's hands"
Since you are leaving it in God's hands perhaps it would be beneficial if you read and follow
the info in the book "The Maker's Diet". Give God some help!
also see the "Curing cancer from the inside out" DVD which includes a stage IV melanoma patient.
I would strongly suggest having your blood tested for a vitamin D-3 deficiency.
Since you live in the Midwest I would be willing to bet that you are very deficient.
Best wishes,
Gene
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- March 12, 2013 at 3:23 am
Hi Tina,
The same thing happened to me in 2008. I was to get my 5th infusion when I had the severe headaches. After 2 weeks an MRI revealed a swollen pituitary. I had hypophysitis. At that time my oncologist saw this kind of response in 10 to 15% of his patients. I was initially put on prednisone. I tapered off it but then was put on hydrocortisone. The pituitary regained it's normal size but I needed the hydrocortisone as a hormone replacement. Unfortunately I haven't been able to taper off it. Fortunately I've been NED for over 5 years. Initially I was on Synthroid. I've had minor issues with the thyroid since but have not been treated with other meds for it. You will need follow up appts with an endocrinologist with lab work to determine your hormone levels. I've continued to be adrenal insufficient. Your nurse is right. According to my onc. this kind of response is is the best you could have hoped for.
God Bless and much success,
Jim M.
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- March 12, 2013 at 12:41 pm
Thank you, Jim… what an encouraging note 🙂 . I was already somewhat adrenal insufficient before ever starting Ipi, so they are following that closely,as well. Had my TSH and T4 drawn this past week, but no results yet. Your 5 yr NED status is sure an encouragement!!
Thank you!
Tina
Gene and Al, Thanks so much! I really appreciate the advice and resources, Gene and I do have that book, and found it to have lots of good information in it. I am thankful, as always, to have this helpful and great group of people that I find here.
With Gratitude,
Tina
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- March 12, 2013 at 12:41 pm
Thank you, Jim… what an encouraging note 🙂 . I was already somewhat adrenal insufficient before ever starting Ipi, so they are following that closely,as well. Had my TSH and T4 drawn this past week, but no results yet. Your 5 yr NED status is sure an encouragement!!
Thank you!
Tina
Gene and Al, Thanks so much! I really appreciate the advice and resources, Gene and I do have that book, and found it to have lots of good information in it. I am thankful, as always, to have this helpful and great group of people that I find here.
With Gratitude,
Tina
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- March 12, 2013 at 12:41 pm
Thank you, Jim… what an encouraging note 🙂 . I was already somewhat adrenal insufficient before ever starting Ipi, so they are following that closely,as well. Had my TSH and T4 drawn this past week, but no results yet. Your 5 yr NED status is sure an encouragement!!
Thank you!
Tina
Gene and Al, Thanks so much! I really appreciate the advice and resources, Gene and I do have that book, and found it to have lots of good information in it. I am thankful, as always, to have this helpful and great group of people that I find here.
With Gratitude,
Tina
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- March 12, 2013 at 3:23 am
Hi Tina,
The same thing happened to me in 2008. I was to get my 5th infusion when I had the severe headaches. After 2 weeks an MRI revealed a swollen pituitary. I had hypophysitis. At that time my oncologist saw this kind of response in 10 to 15% of his patients. I was initially put on prednisone. I tapered off it but then was put on hydrocortisone. The pituitary regained it's normal size but I needed the hydrocortisone as a hormone replacement. Unfortunately I haven't been able to taper off it. Fortunately I've been NED for over 5 years. Initially I was on Synthroid. I've had minor issues with the thyroid since but have not been treated with other meds for it. You will need follow up appts with an endocrinologist with lab work to determine your hormone levels. I've continued to be adrenal insufficient. Your nurse is right. According to my onc. this kind of response is is the best you could have hoped for.
God Bless and much success,
Jim M.
-
- March 12, 2013 at 3:23 am
Hi Tina,
The same thing happened to me in 2008. I was to get my 5th infusion when I had the severe headaches. After 2 weeks an MRI revealed a swollen pituitary. I had hypophysitis. At that time my oncologist saw this kind of response in 10 to 15% of his patients. I was initially put on prednisone. I tapered off it but then was put on hydrocortisone. The pituitary regained it's normal size but I needed the hydrocortisone as a hormone replacement. Unfortunately I haven't been able to taper off it. Fortunately I've been NED for over 5 years. Initially I was on Synthroid. I've had minor issues with the thyroid since but have not been treated with other meds for it. You will need follow up appts with an endocrinologist with lab work to determine your hormone levels. I've continued to be adrenal insufficient. Your nurse is right. According to my onc. this kind of response is is the best you could have hoped for.
God Bless and much success,
Jim M.
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