› Forums › General Melanoma Community › My melanoma story
- This topic has 18 replies, 5 voices, and was last updated 8 years, 9 months ago by
jennunicorn.
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- September 13, 2016 at 3:04 pm
My first 44 months(was supposed to be only 6 months) in the Army my face was exposed to radiation almost on a daily basis with plastice safety glasses as my only protection. Ten years later I had my first basel cell while still on active duty. That was in 2002 and until June of 2015 I had 15 basel and squamos cancers removed from my face area. In June of 2015 I had 2 melanomas, one on my forehead and a stage 2B to the lower left of my crown. The stage 2B took 3 surguries and I was left with a huge hole in the back of my head. The PET Scan was negative. On June 8th this year while drying off after a shower I felt a knot in my lower left neck and immediately I knew what it was. That was on Friday. Monday morning I called my onocology surgeon and he asked If I could come see him then. I live 3 hours away from Audie Murphy VA Hospital so I left to go see him. He scheduled me for surgury the next Monday and a PET scan that Wednesday. The Pet scan results came back before my surgury. The results were not positive on the knot in my neck but had multiple tumors in both lungs consistant with melanoma that were not there in my last PET scan a year earlier. The knot in my neck was matatisized melanoma. The diagnosis was stage 4 non-surgical mataisized melanoma in both lungs. I have had more than my share of horror storys dealing with the VA over the years but with my cancer they have been excellent. I am the first veteran at Audie Murphy hospital to receive the yervoy/opdivo combo mainly because I am the first veteran whose overall health was good enough to risk the side effects. The cost of these drugs for my treatment is $800,000 and had to be signed off by a finace board which only took 2 days. Within a month of my diagnosis I received my first dose of drugs. I had my 4th and last combo on 9/9/2016. I now have 4 doses of opdivo then back to the combo. The VA has really came through on my treatment. Before my first treatment they gave me presciptions for steriod cream for the rash and steriod pills that I could take if serious side effects developed but could only take I they told me to. I have been very lucky on side effects. After the first I did get a rash on my arms, chest and shoulders but only 3 or 4 spots itched and no burning. The steriod cream took care of the itch. I had a lot of fatigue the firat 4 to 5 weeks and ran fever for 6 weeks which is just now going away as it comes and goes. I took motrin every 4 hours to keep it under control. I did not have an appetite the first 4 or 5 weeks and lost 27 pounds. I tell people nothing beats the melanoma diet, all you have to do is wake up to lose weight. I have continued to work with usually working 3 to 4 days a week. I spent 3 days in the hospital running test for infection due to the fever but it was determined the fever was just a side effect and no infection. My dr did a CT scan at 8 weeks due to several chest xrays looking good. The scan had several tumors so small they could not determine if they were gone or not, 3 tumors were smaller and 2 were slightly larger. My guess is that 27 days passed between my PET scan and my first dose of drugs so I assume the tumors had continued to grow and have probably skrunk. I think I have been luckier than most on the side effects as I have been mowing the yard, and still doing all the things I did before my diagnosis. I am looking forward to my scan at 14 weeks.
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- September 13, 2016 at 10:30 pm
Welcome!
It sounds like your tumours are responding to the immunotherapy.
I also had immunotherapy rather than surgery to treat my tumours. In my case it was Ipi (Yervoy). I have also worked throughout the process and also lost weight. My advice is to keep your eyes out for any endocrine side effects – if I had realised what was happening earilier, the doctors have saved my anterior pituitary gland – it was damaged badly by the Ipi (Yervoy).
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- September 13, 2016 at 10:30 pm
Welcome!
It sounds like your tumours are responding to the immunotherapy.
I also had immunotherapy rather than surgery to treat my tumours. In my case it was Ipi (Yervoy). I have also worked throughout the process and also lost weight. My advice is to keep your eyes out for any endocrine side effects – if I had realised what was happening earilier, the doctors have saved my anterior pituitary gland – it was damaged badly by the Ipi (Yervoy).
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- September 13, 2016 at 10:30 pm
Welcome!
It sounds like your tumours are responding to the immunotherapy.
I also had immunotherapy rather than surgery to treat my tumours. In my case it was Ipi (Yervoy). I have also worked throughout the process and also lost weight. My advice is to keep your eyes out for any endocrine side effects – if I had realised what was happening earilier, the doctors have saved my anterior pituitary gland – it was damaged badly by the Ipi (Yervoy).
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- September 14, 2016 at 3:01 pm
Congrats on what appears to ge great results with not too bad side effects. Great to hear a positive VA story. I echo the awareness for the endocrine side effects. Watch for headaches. Anyone lasting more than 24 hours could be hypophysitis.
Brisn
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- September 14, 2016 at 3:01 pm
Congrats on what appears to ge great results with not too bad side effects. Great to hear a positive VA story. I echo the awareness for the endocrine side effects. Watch for headaches. Anyone lasting more than 24 hours could be hypophysitis.
Brisn
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- September 14, 2016 at 3:01 pm
Congrats on what appears to ge great results with not too bad side effects. Great to hear a positive VA story. I echo the awareness for the endocrine side effects. Watch for headaches. Anyone lasting more than 24 hours could be hypophysitis.
Brisn
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- September 15, 2016 at 8:41 pm
I am scared for my husand, he is currently going through ipi/odivo which he had 4 infusions of and now he is down to 1 drug every two weeks. Blood work returning to normal so we think it is working. Having trouble with his eyes, one showed some melanoma, which the previous PET scan did pick up, so nothing new after starting treatment. He is scheduled to see an ocular oncologist on Monday. He is now having blurring vision in his good eye and is worried. I don't know if it's just because he is so fixated on losing his vision and causing some of the worry or if it is because of the treatment. He also has blood in his urine, with no other side effects, no pain, fever, blood pressure and pulse good. We have an appointment with a urologist, but not until 10/13, there earliest rush appointment, if you can believe it.
Wondering if I should push with a second opionion at Stanford or just let things play out. Life doen't prepare you for any of this. Emotional roller coaster and I hate roller coasters. Anyone out there is positive stories and suggestions, I would love to hear from you.
Pamela Carpenter
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- September 15, 2016 at 8:41 pm
I am scared for my husand, he is currently going through ipi/odivo which he had 4 infusions of and now he is down to 1 drug every two weeks. Blood work returning to normal so we think it is working. Having trouble with his eyes, one showed some melanoma, which the previous PET scan did pick up, so nothing new after starting treatment. He is scheduled to see an ocular oncologist on Monday. He is now having blurring vision in his good eye and is worried. I don't know if it's just because he is so fixated on losing his vision and causing some of the worry or if it is because of the treatment. He also has blood in his urine, with no other side effects, no pain, fever, blood pressure and pulse good. We have an appointment with a urologist, but not until 10/13, there earliest rush appointment, if you can believe it.
Wondering if I should push with a second opionion at Stanford or just let things play out. Life doen't prepare you for any of this. Emotional roller coaster and I hate roller coasters. Anyone out there is positive stories and suggestions, I would love to hear from you.
Pamela Carpenter
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- September 15, 2016 at 8:41 pm
I am scared for my husand, he is currently going through ipi/odivo which he had 4 infusions of and now he is down to 1 drug every two weeks. Blood work returning to normal so we think it is working. Having trouble with his eyes, one showed some melanoma, which the previous PET scan did pick up, so nothing new after starting treatment. He is scheduled to see an ocular oncologist on Monday. He is now having blurring vision in his good eye and is worried. I don't know if it's just because he is so fixated on losing his vision and causing some of the worry or if it is because of the treatment. He also has blood in his urine, with no other side effects, no pain, fever, blood pressure and pulse good. We have an appointment with a urologist, but not until 10/13, there earliest rush appointment, if you can believe it.
Wondering if I should push with a second opionion at Stanford or just let things play out. Life doen't prepare you for any of this. Emotional roller coaster and I hate roller coasters. Anyone out there is positive stories and suggestions, I would love to hear from you.
Pamela Carpenter
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- September 15, 2016 at 11:12 pm
If you want a second opinion at a really great research hospital besides Stanford, you could check out UCSF, they have a very good ocular oncology clinic. I go to the melanoma center there, even though Stanford is closer to home. Been very please with my experience at UCSF. Second opinions from different places is really good.
https://www.ucsfhealth.org/clinics/ocular_oncology/
Wishing your husband all the best,
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- September 15, 2016 at 11:12 pm
If you want a second opinion at a really great research hospital besides Stanford, you could check out UCSF, they have a very good ocular oncology clinic. I go to the melanoma center there, even though Stanford is closer to home. Been very please with my experience at UCSF. Second opinions from different places is really good.
https://www.ucsfhealth.org/clinics/ocular_oncology/
Wishing your husband all the best,
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- September 15, 2016 at 11:12 pm
If you want a second opinion at a really great research hospital besides Stanford, you could check out UCSF, they have a very good ocular oncology clinic. I go to the melanoma center there, even though Stanford is closer to home. Been very please with my experience at UCSF. Second opinions from different places is really good.
https://www.ucsfhealth.org/clinics/ocular_oncology/
Wishing your husband all the best,
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