› Forums › General Melanoma Community › Good News!
- This topic has 27 replies, 8 voices, and was last updated 9 years, 3 months ago by _Paul_.
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- June 10, 2015 at 1:54 am
I was first diagnosed with melanoma in 1998…Stage 1A. It recurred in February of 2013 in my brain. I had a craniotomy and SRS. Then it was found in my lung, then my spine and well….all over. Radiation, spinal surgery and fusion, Yervoy (pituitary gland didn't like it), failed trial at NIH all followed. But……..After a year of Keytruda, my PET/CT scans and Brain MRI show no evidence of active malignancy!!!! Immunotherapy gives us so much hope!
Keep fighting!
Terrie
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- June 10, 2015 at 3:56 am
Congratulations Terrie! That's phenomenal news! I only wish you could have been spared the treatments that didn't work for you and gone straight to the one that did! One day (I hope soon ) they may be able to tell in advance which treatment is most likely to work for us as individuals. What a timesaver that would be. May you live a long and healthy life!
cheers
Maggie
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- June 10, 2015 at 3:56 am
Congratulations Terrie! That's phenomenal news! I only wish you could have been spared the treatments that didn't work for you and gone straight to the one that did! One day (I hope soon ) they may be able to tell in advance which treatment is most likely to work for us as individuals. What a timesaver that would be. May you live a long and healthy life!
cheers
Maggie
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- June 10, 2015 at 3:56 am
Congratulations Terrie! That's phenomenal news! I only wish you could have been spared the treatments that didn't work for you and gone straight to the one that did! One day (I hope soon ) they may be able to tell in advance which treatment is most likely to work for us as individuals. What a timesaver that would be. May you live a long and healthy life!
cheers
Maggie
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- June 10, 2015 at 1:41 pm
Congrats with your NED status!
If you don't mind, could I ask you what was the depth of your primary in 1998? When Stage 1a recutrrs so many years later, one may wonder why???
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- June 10, 2015 at 5:17 pm
I don't mind at all! Here are the details: Malignant Melanoma, superficial spreading type, Clark level II, Breslow's depth 0.45mm, Ulceration: absent, Mitotic rate per mm2: 0, Regression: Absent, Tumor infiltrating lymphocytes: Mild, Associated melanocytic nevus: absent
At the time, I knew pretty much nothing about melanoma with the exception that it was very serious. I diligently followed up with my dermatologist and had many spots removed but none were malignant.
Melanoma specialists have looked at my records and feel that everything was handled correctly. There is no real answer about why it recurred. One little cell that they didn't get? Mutations? Who knows. I really wish I could get an answer as this has puzzled me. I was a sun bather as a teenager but not at all after I was about 16. Never used tanning beds. My mother had melanoma and was very cautious about the sun. All agree that although such a lapse does happen, it's really quite rare. The oncologists (who are melanoma specialists) that I've seen have had other or have heard of other patients where there was a lapse of many years before it returned. I can tell you that when I was told that i had a mass in my brain and it was presenting as cancer, I was shocked. I just sat there and speechlessly stared at the doctor! I had fallen and thought I had a concussion. After a craniotomy, the tumor proved to be Melanoma.
I guess I should put more information in my profile. When I first posted my information, I wasn't feeling all that well and didn't put much effort into it. Haven't looked at it in a long time!
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- June 10, 2015 at 5:17 pm
I don't mind at all! Here are the details: Malignant Melanoma, superficial spreading type, Clark level II, Breslow's depth 0.45mm, Ulceration: absent, Mitotic rate per mm2: 0, Regression: Absent, Tumor infiltrating lymphocytes: Mild, Associated melanocytic nevus: absent
At the time, I knew pretty much nothing about melanoma with the exception that it was very serious. I diligently followed up with my dermatologist and had many spots removed but none were malignant.
Melanoma specialists have looked at my records and feel that everything was handled correctly. There is no real answer about why it recurred. One little cell that they didn't get? Mutations? Who knows. I really wish I could get an answer as this has puzzled me. I was a sun bather as a teenager but not at all after I was about 16. Never used tanning beds. My mother had melanoma and was very cautious about the sun. All agree that although such a lapse does happen, it's really quite rare. The oncologists (who are melanoma specialists) that I've seen have had other or have heard of other patients where there was a lapse of many years before it returned. I can tell you that when I was told that i had a mass in my brain and it was presenting as cancer, I was shocked. I just sat there and speechlessly stared at the doctor! I had fallen and thought I had a concussion. After a craniotomy, the tumor proved to be Melanoma.
I guess I should put more information in my profile. When I first posted my information, I wasn't feeling all that well and didn't put much effort into it. Haven't looked at it in a long time!
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- June 10, 2015 at 5:17 pm
I don't mind at all! Here are the details: Malignant Melanoma, superficial spreading type, Clark level II, Breslow's depth 0.45mm, Ulceration: absent, Mitotic rate per mm2: 0, Regression: Absent, Tumor infiltrating lymphocytes: Mild, Associated melanocytic nevus: absent
At the time, I knew pretty much nothing about melanoma with the exception that it was very serious. I diligently followed up with my dermatologist and had many spots removed but none were malignant.
Melanoma specialists have looked at my records and feel that everything was handled correctly. There is no real answer about why it recurred. One little cell that they didn't get? Mutations? Who knows. I really wish I could get an answer as this has puzzled me. I was a sun bather as a teenager but not at all after I was about 16. Never used tanning beds. My mother had melanoma and was very cautious about the sun. All agree that although such a lapse does happen, it's really quite rare. The oncologists (who are melanoma specialists) that I've seen have had other or have heard of other patients where there was a lapse of many years before it returned. I can tell you that when I was told that i had a mass in my brain and it was presenting as cancer, I was shocked. I just sat there and speechlessly stared at the doctor! I had fallen and thought I had a concussion. After a craniotomy, the tumor proved to be Melanoma.
I guess I should put more information in my profile. When I first posted my information, I wasn't feeling all that well and didn't put much effort into it. Haven't looked at it in a long time!
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- June 10, 2015 at 2:08 pm
Congrats Terrie. That is great.
Artie
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- June 10, 2015 at 2:08 pm
Congrats Terrie. That is great.
Artie
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- June 10, 2015 at 2:08 pm
Congrats Terrie. That is great.
Artie
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- June 10, 2015 at 6:06 pm
Awesome news Terrie! I also had what Celeste calls indolent melanoma (10years between Stages 1 and 4). If I may ask–what was your early experience with Keytruda? Dramatic reduction, stability with slow reduction? Thanks!
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- June 10, 2015 at 9:21 pm
Hi Mat! I had a dramatic reduction with Keytruda. I started Keytruda right after I had participated in a trial at NIH. The trial was called MAGE TCR and involved t-cells. (The trial failed.) My doctor, Dr. Atkins, felt the combination of the t-cell therapy and Keytruda (Pembro at the time) contributed to a quick response.
Take care!
Terrie
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- June 10, 2015 at 9:21 pm
Hi Mat! I had a dramatic reduction with Keytruda. I started Keytruda right after I had participated in a trial at NIH. The trial was called MAGE TCR and involved t-cells. (The trial failed.) My doctor, Dr. Atkins, felt the combination of the t-cell therapy and Keytruda (Pembro at the time) contributed to a quick response.
Take care!
Terrie
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- June 10, 2015 at 9:21 pm
Hi Mat! I had a dramatic reduction with Keytruda. I started Keytruda right after I had participated in a trial at NIH. The trial was called MAGE TCR and involved t-cells. (The trial failed.) My doctor, Dr. Atkins, felt the combination of the t-cell therapy and Keytruda (Pembro at the time) contributed to a quick response.
Take care!
Terrie
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