› Forums › General Melanoma Community › My Melanoma Story
- This topic has 42 replies, 9 voices, and was last updated 9 years, 7 months ago by
RayPMcConnell.
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- October 8, 2015 at 3:37 pm
On October 13, 2013, I asked my primary care physician to look at a mole on my lower right chest. After examining it he stated that it was a benign keratosis.
On October 4, 2014, I first experienced groin pain and swelling that lead to emergency surgery for what was thought to be an incarcerated hernia. It turned out to be a swollen lymph node. The local pathologists eventually referred the specimen to the Mayo Clinic, who diagnosed metastatic melanoma in late October. I was then referred to the Melanoma Clinic at U of M Hospital in Ann Arbor.A PET scan was done on November 7, which revealed no additional hot spots other than the post surgical inflammation in the right groin and the mole on my abdomen. Scattered indeterminate lung nodules were detected that would require follow-up.At my first appointment in Ann Arbor on November 12, I was informed that I would undergo right groin lymph node resection surgery on December 4. The mole was removed, biopsied, and confirmed as the point of origin (Clark's Level IV, Breslow Depth 5.5 mm).The surgery was performed, and, after over a month of recovery time and the removal of the two surgical drains, I was first seen by my oncologist in Ann Arbor, who stated that I was Stage 3C, and would be subsequently seen for surveillance assuming that the chest, abdomen, and pelvis CT and brain MRI were negative.The January 19, CT scan revealed multiple nodules in both lungs, several having quadrupled in size compared to the November 7 PET scan (the largest went from 4 to 17 mm). A lung biopsy on February 6, confirmed that I was Stage 4.I received 2 of 4 infusions of the Nivolumab and Ipilimumab combination immunotherapy treatment on February 27 and March 24, before severe toxicity reactions forced a stoppage.I developed drug-induced autoimmune hepatitis, diabetes requiring insulin injections (blood sugars spiking to over 500), and meningitis-like brain inflammation.I was hospitalized for two weeks and prescribed steroids for a few months until my liver function returned to normal.On the bright side, CT scans in March and July showed continued shrinkage in both the number and size of the lung tumors, and the CT scan done last Friday showed No Evidence of Disease!
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- October 8, 2015 at 4:44 pm
Dear Ray,
So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste
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- October 8, 2015 at 4:44 pm
Dear Ray,
So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste
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- October 8, 2015 at 6:05 pm
Thank you, Celeste!
I'm profoundly blessed, especially with the news this week.
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- October 8, 2015 at 6:05 pm
Thank you, Celeste!
I'm profoundly blessed, especially with the news this week.
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- October 8, 2015 at 6:05 pm
Thank you, Celeste!
I'm profoundly blessed, especially with the news this week.
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- October 8, 2015 at 4:44 pm
Dear Ray,
So sorry for all you have been through, but….CONGRATULATIONS! You are living proof of all the recent studies coming out re immunotherapy generally and the ipi/nivo combo specifically. Yes, sadly, side effects are real and difficult. Yet, with treatment, often prednisone…positive responses are not compromised and side effects can be tamed. And…even when folks have to be taken off treatment, positive responses can continue to develop! That is awesome! Thanks for sharing your story. Wishing you my best! Celeste
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- October 8, 2015 at 5:14 pm
Incredible story Ray. Thanks for sharing and congrats.
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- October 8, 2015 at 6:06 pm
Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐
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- October 8, 2015 at 6:06 pm
Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐
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- October 8, 2015 at 6:06 pm
Thank you, Brian. So glad this roller coaster I've been riding the past year is now going up ๐
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- October 8, 2015 at 6:39 pm
Amazing story ray congrats! Do you still have any side effects?
Jamie-
- October 8, 2015 at 8:01 pm
Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.
My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.
I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐
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- October 8, 2015 at 8:01 pm
Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.
My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.
I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐
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- October 8, 2015 at 8:01 pm
Thank you. I'm still on insulin and my blood pressure, which had been under control since 2003, has really spiked up the past two months.
My oncologist doesn't think the elevated BP is related to the immunotherapy, but he's not completely sure because there are still a lot of unknowns regarding these drugs, especially in combination.
I told him that I feel like I'm playing whack-a-mole with all these health conditions ๐
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- October 9, 2015 at 2:06 am
I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.
So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.
Here's to your continued health!
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- October 9, 2015 at 2:06 am
I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.
So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.
Here's to your continued health!
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- October 9, 2015 at 2:06 am
I read your first sentence and stopped. My doctor examined a mole on my back that I asked him to look at, and his verdict was "seborrheic keratosis." I didn't worry about it for a while, then when it got larger I asked him to take it off. He removed it in his office, and a week later when I went back to get the stitches out, he told me it was melanoma.
So my story starts similiarly to yours. I hope mine ends like yours, too! I've had 4 cycles of Keytruda, and so far things are shrinking.
Here's to your continued health!
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- October 12, 2015 at 3:34 am
Congratulations on your NED status! A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination! I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!
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- October 12, 2015 at 3:34 am
Congratulations on your NED status! A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination! I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!
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- October 12, 2015 at 3:34 am
Congratulations on your NED status! A tough and rocky road to get there to be sure, but you couldn't have arrived at a better destination! I hope your other medical issues resolve quickly and you can get back to living life the way it is meant to be lived!
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Tagged: cutaneous melanoma
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