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- November 25, 2020 at 2:08 pm
Hello nanwithaplan,
My husbands body does not produce enough cortisol since he was on Ipi (Yervoy 10 mg/kg) and GMCSF and he became NED in July 2012 but stayed on the meds until Dec. 2013. He is unable to go without his prednisone which he takes every day 5mg in the morning and 2.5mg every evening. But it was a small price to pay for NED. And 7.5 mg is what your body produces in cortisol every day.Judy (loving wife of Gene Stage IV and now NED for over 8 years
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- November 9, 2020 at 2:56 pm
Hello,I am not the patient but I wanted to give you some hope. In 2008, when there weren’t the options there are today my husband had a 10.5 mm Melanoma removed off of his scalp. His WLE was 10.5 cm and his SNL was negative. He had the skin graft which he said was the worst part of the procedure as far as pain. He had several more surgeries because there was nothing for Stage III at that time. He proceeded and became Stage IV in Oct. 2010 and started a clinical trial in March of 2011. He became NED (no evidence of disease) in July 2012 and has remained that way since which is over 8 years. If you would like to read more check out his profile.
The now have treatments for stage III which they did not when he was diagnosed. And a lot more treatments to consider. He is still going strong and his age was much older. So here is hoping you will find something that is successful for you and live a long life and watch those children grow up and do lots with them.
Judy the loving wife of Gene Stage IV and with a clinical trial of Ipi (Yervoy) and GMCSF he has been NED for over 8 years.
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- September 24, 2020 at 2:00 pm
Hello Mr. Bill,My husband had a 10.5 mm nodular melanoma on his head and when they did his surgery it was a 10.5 cm taken off and then they cinched the area down to about 4 cm. In closing the area up he had a skin graft taken from his thigh. He said the worst part was the skin graft area on the thigh but that his head felt like he had a stocking cap on that was small and felt to tight. He got the face lift from all of that skin being pulled together from the surgery. His SNB came back negative. At the time his was done they weren’t doing anything for stage III as this was in 2008. He later progressed to Stage IV and did a clinical trial with Ipi (Yervoy) 10 mg/kg and GMCSF and has been cancer free since July 2012. The best of luck to you.
Judy the loving wife of Gene
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- August 12, 2020 at 2:10 pm
My husband always had his scans in the morning and the Dr. Appointment in the afternoon. The doctor would go on the computer and look through the scans and let him know the outcome.July loving wife of Gene (Stage IV and now NED after IPI ((Yervoy)) 10 mg/kg and GMCSF) NED since July 2012
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- July 14, 2020 at 2:06 pm
Hello John,
My husband was on Yervoy and he developed vitiligo and the white eyebrows and beard. This also made his face white down to the collar bone.
He also has white spots on his arms. He has been NED for 8 years and still has all of the things that turned white.He stopped the Yervoy in Dec. 2013.
Judy the loving wife of Gene Stage !V Clinical Trial of Ipi (Yervoy) 10 mg/kg and GMCSF self injections
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- February 6, 2020 at 3:01 pm
My husband when he started treatment have very little grey hair and he was 56 years old. He started his Clinical Trial of Ipi (10 mg/kg) and GMCSF daily injections. His eyebrows started turning white and his oncologist said it was great news and that it meant it was working and he also lost pigmentation in his skin down to his collar bone. He had lots of stress from the cancer, 5 retina surgeries which left him blind in that eye and glaucoma. His daughter had cervical cancer and later developed colon cancer and cancer of the peritoneum and unfortunately passed. Her husband passed 22 months later. He still have very little grey hair and the only white hair is in his eyebrows and beard and this is 11 years later. He has been NED for over 7 years.Judy the loving wife of Gene Stage IV and NED for over 7 years
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- January 30, 2020 at 3:24 pm
Hello,My husband had a melanoma on his scalp and it was 10.5 mm. It was not from a blue nevus but a black mole.
They removed a big area off of his head/scalp at 10.5 cm and did a skin graft from his thigh. His SLN biopsy was clear.He had a reoccurrence on his head 9 months later. He had several more surgeries on his head and 1 on his neck.
Then he had an unresectable lesion at 2 years 9 months after the initial diagnosis with numerous subcutaneous ones
at that site. Then it was discovered from scans that he also had lesions in his liver and lungs. It never went into his brain.He was put on a clinical trial for IPI (10 mg/kg) and GMCSF. He became NED in July 2012 and has remained that status.
If you would like to read more about his journey you can read his profile.Judy the loving wife of Gene Stage IV and now NED for 7 years and 7 months.
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- December 2, 2019 at 3:17 pm
Hello, I hope I can ease your mind a little. I do agree with the others to see if you can get into a cancer support group as it at least has many people that are going through the same thing as you.My husband started out as a 3C melanoma cancer patient as well in 2008. He did progress to stage IV in 2010 and started in a clinical trial in 2011. Back then they didn’t have the combo drugs so he was on Yervoy (back then it was called IPI) and GMCSF. He did have some side effects and to this day takes a small dose of prednisone daily as his body does not produce cortisol. He became NED (no evidence of disease) in July 2012 and has remained that way for over 7 years. If you would like to read more about his journey you can read his profile.
Judy loving wife and caregiver to Gene (Stage IV and NED for over 7 years.
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- October 30, 2020 at 1:48 pm
I don’t know if your parents would do this or not but we used to take a small personal recorder with us and asked the doctor if we could record him since it is not so easy to remember everything he said and this way we could listen to it again or let our daughters hear what was discussed at that particular visit.I hope this might could help.
Judy the loving wife of Gene – Stage 1v and now NED for over 8 years – Ipi (Yervoy) 10 mg/kg and GMCSF daily self injections -
- December 16, 2019 at 4:10 pm
First off Gene did not write this article and in research you should check out everything possible and read and learn about it.Second, I believe we all have minds and can make up our own mind if we believe any of this or not. But in some cases Ed Williams and
Hitchens are trying to be rulers of the board. Almost like they are the Liberals or Socialists and trying to govern us. Also neither has a
profile so do they have melanoma or do they work for a big Pharma Company and I believe they might be the same person as they love
to pick on Gene.Third, melanoma is known to work differently for each individual and the drugs work differently on each individual as well. So who is to
say that whatever you are taking to kick out melanoma if you tried some of the unconventional things with it might enhance it and make
it work better. When Gene was going through treatments his nurse worked in research and was doing a big study on Vitamin D3 and was also
monitoring some patients to see which were having any better response while using Vitamin D3. Before going to the melanoma department
she worked in breast cancer and was doing her study there as well on Vitamin D3. She also found that most babies were being born
Vitamin D3 deficient as their mothers were also deficient.Last but not least I normally only post on things people are asking about such as Ipi, Melanoma on the head, a little Stage IV and caregiver things
that I am knowledgeable about or have lived through. And this time which there have been several that my name was included in beware warnings.
So Ed Williams and Hitchens don’t say I post anything that doesn’t have my name on it as I sign all of mine with my name Judy the loving wife
of Gene Stage IV and NED (Ipi 10 mg/kg and GMCSF Self injections 14 days on and 7 days off) for over 7.5 years.Judy the loving wife of Gene Stage IV and NED Judy the loving wife
of Gene Stage IV and NED (Ipi 10 mg/kg and GMCSF Self injections 14 days on and 7 days off) for over 7.5 years (Ipi 10 mg/kg and
GMCSF Self injections 14 days on and 7 days off) for over 7.5 years. -
- November 3, 2019 at 7:18 pm
I have not solicited any treatments. My daughter who passed from cancer (not melanoma) was a very active person and was a mail person who delivers mail by walking house to house. She followed what the oncologist said and did chemo and she lived about 12 months but almost died twice from the chemo before she quit it. I sign my name on what I post as Judy loving wife of Gene in case you missed that in my last post. I do not post as Gene and he doesn’t post as me even though we use the same profile. -
- November 2, 2019 at 11:51 pm
Look at the chart at http://worldpopulationreview.com/countries/best-healthcare-in-the-world/ the USA is in 37th place. Maybe you will understand the overseas part of his post? -
- November 2, 2019 at 4:28 pm
Hitchens, You don’t know me very well as I only post things about giving people insight that some have survived from Ipi since my husband
has survived. I offer help if it is something I know about or to give someone support. I always sign my name Judy loving wife of Gene. Yes
I do use his user name as I see no reason to start another when I am not the patient and have never had melanoma. I am a care giver to
someone who was a Stage IV and had numerous spots of melanoma and whom I thought might not make it. I thank God every day that
he did survive. So from a caregivers stance I think I do know how other caregivers are feeling and can possibly help them. So don’t be so
quick to cut me down.Judy (loving wife of Gene Stage IV and after IPI and GMCSF has been NED for over 7 years)
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