@jend33
Forum Replies Created
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- April 9, 2014 at 7:05 pm
I am so sorry to hear that. My husband has stage 4 ,also has brain mets . They did whole brain radiation first then went to zelboraf. God that was great we could actually see some of them shrinking.The zelboraf just stopped working2 weeks ago. He just had scan and most of them are gone or very small except he just got a new one, I feel like we are just cant catch a break. We are waiting for insurance to approve ipilumimab. Dr wants to do pd1 but we have to wait until it comes out fda. They never gave us option of surgery because of location and to many. I hope everything works out for you. Please keep me informed on pd1 he also has multiple sclerosis so he wont qualify for any trials. We are willing to try whats wver available. Even with certain risks we dont have any other option .I camt loose my best friend and husband of 23 yrs. I sincerely wish you the best.
Jen -
- April 9, 2014 at 7:05 pm
I am so sorry to hear that. My husband has stage 4 ,also has brain mets . They did whole brain radiation first then went to zelboraf. God that was great we could actually see some of them shrinking.The zelboraf just stopped working2 weeks ago. He just had scan and most of them are gone or very small except he just got a new one, I feel like we are just cant catch a break. We are waiting for insurance to approve ipilumimab. Dr wants to do pd1 but we have to wait until it comes out fda. They never gave us option of surgery because of location and to many. I hope everything works out for you. Please keep me informed on pd1 he also has multiple sclerosis so he wont qualify for any trials. We are willing to try whats wver available. Even with certain risks we dont have any other option .I camt loose my best friend and husband of 23 yrs. I sincerely wish you the best.
Jen -
- April 9, 2014 at 7:05 pm
I am so sorry to hear that. My husband has stage 4 ,also has brain mets . They did whole brain radiation first then went to zelboraf. God that was great we could actually see some of them shrinking.The zelboraf just stopped working2 weeks ago. He just had scan and most of them are gone or very small except he just got a new one, I feel like we are just cant catch a break. We are waiting for insurance to approve ipilumimab. Dr wants to do pd1 but we have to wait until it comes out fda. They never gave us option of surgery because of location and to many. I hope everything works out for you. Please keep me informed on pd1 he also has multiple sclerosis so he wont qualify for any trials. We are willing to try whats wver available. Even with certain risks we dont have any other option .I camt loose my best friend and husband of 23 yrs. I sincerely wish you the best.
Jen -
- April 9, 2014 at 3:26 pm
Hi,
My husband had a mole on his upper chest and had many dr and specialist look at it no one said anything about it over several month it grew got itchy, then it started bleeding. Went to er for sprained ankle Dr looked at said it was melanoma within 2 weeks had surgery they went pretty deep to make as sure they got it and removed lymph nodes to make sure it didnt spread . We caught it in time and he was free for 15 yrs. Please relax you will make yourself sick, absolutely stay positive. I was on the other side of things I didnt have it but my best friend did ,what he went threw I went threw he still did everything as he would before knowing he had it but was very careful about the sun to make things worse he worked as a landscaper and had multiple sclerosis. I pray all goes well for you. Jen -
- April 9, 2014 at 3:26 pm
Hi,
My husband had a mole on his upper chest and had many dr and specialist look at it no one said anything about it over several month it grew got itchy, then it started bleeding. Went to er for sprained ankle Dr looked at said it was melanoma within 2 weeks had surgery they went pretty deep to make as sure they got it and removed lymph nodes to make sure it didnt spread . We caught it in time and he was free for 15 yrs. Please relax you will make yourself sick, absolutely stay positive. I was on the other side of things I didnt have it but my best friend did ,what he went threw I went threw he still did everything as he would before knowing he had it but was very careful about the sun to make things worse he worked as a landscaper and had multiple sclerosis. I pray all goes well for you. Jen -
- April 9, 2014 at 3:26 pm
Hi,
My husband had a mole on his upper chest and had many dr and specialist look at it no one said anything about it over several month it grew got itchy, then it started bleeding. Went to er for sprained ankle Dr looked at said it was melanoma within 2 weeks had surgery they went pretty deep to make as sure they got it and removed lymph nodes to make sure it didnt spread . We caught it in time and he was free for 15 yrs. Please relax you will make yourself sick, absolutely stay positive. I was on the other side of things I didnt have it but my best friend did ,what he went threw I went threw he still did everything as he would before knowing he had it but was very careful about the sun to make things worse he worked as a landscaper and had multiple sclerosis. I pray all goes well for you. Jen -
- April 13, 2014 at 12:44 am
Hi,
Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4 15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.
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- April 13, 2014 at 12:44 am
Hi,
Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4 15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.
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- April 13, 2014 at 12:44 am
Hi,
Thank you for the response I am defiantly up to date on the pd-1 that is what we are waiting for hopefully it will be fda approved soon, but in the mean time we will be starting the IPI on 4/23. It has been a roller coaster waiting for the insurance to approve around 2 weeks, felt like months. The approval for the zelboraf only took literally 10 min.. I am very happy he was approved when we received the email i was doing the happy dance. Were you able to see the IPI working (shrinking tumors).I am very happy for you and all your success with the drug. they are doing wonderful things now for melanoma, if he was at stage 4 15 years ago he never would of had a chance.Believe me i inquire about all procedures i am his biggest supporter. I agree with you hopefully one day it will just be a chronic disorder. Thank you for taking your time to tell me your story, it does give me hope and we all need to believe.
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- April 12, 2014 at 11:52 pm
It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children speak to soon ill keep you posted on the ipi. take care and good luck ill be praying for you and your family.
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- April 12, 2014 at 11:52 pm
It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children speak to soon ill keep you posted on the ipi. take care and good luck ill be praying for you and your family.
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- April 12, 2014 at 11:52 pm
It was great talking to you, we will deff. keep in touch . Again Happy Birthday and i know you had a wonderfull time at your party jealous of the lobster lol… that was awesome of your children speak to soon ill keep you posted on the ipi. take care and good luck ill be praying for you and your family.
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