› Forums › General Melanoma Community › My husband Stage IV
- This topic has 18 replies, 6 voices, and was last updated 10 years, 11 months ago by
buffcody.
- Post
-
- May 6, 2013 at 2:36 pm
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August.
Hello, my husband has Melanoma stage IV. He was first diganose Feb 15, 2012. At that time he had a mole that was bleeding and was removed and sent for test. Two days after it being removed he had a knot on the right side of the neck. The test came back regarding his back and it was Stage III Melanomia. A PET scan was done and the knot was cancer as well. AT the time they did surgery on the back and next. He had radiation and was done in August. The Aug scan was good and the Nov scan was good. January 2013 scan showed something on the lung. They didnt believe it was cancer but since it grow from Aug and Nov scan (at that time was a small dot and they were not concern). And also there were lesions on the spleen and we was never told about that until later. The surgeron said they are not sure if its cancer that we can wait until next scan or remove it, she advised us she would remove it so we agreed. Sugery was done and was tested and it was Melanomia. Now April its in the lower left lung and still shows lesion on the spleen. They are saying it doesnt look like melanomia but neither did the right lung and it was. I requested to have it removed and they said they cant keep operating on him because it keeps coming back. They want my husband to take Lukine. We are waiting now on that. My question is.. what will this Lukine do.. will it slow it down, will it shrink what is there? No one will tell me what to expect with him in this stage.. How long he has, what do they think is next? I love this hosptial and the dr. are great.
With him being in this stage and it coming back so fast I want to know what to expect. Can anyone help?
- Replies
-
-
- May 6, 2013 at 3:01 pm
Are you being treated at a melanoma center?? Leukine is not the first choice for someone in your husband’s situation! What about Ipi/Yervoy or AntiPD1 trial, what about Zelboraf if he is Braf positive. Even a try at high dose IL2 if he is in good condition! Many choices, but you need a melanoma specialist up on all the current treatments and trials. My first choice would be AntiPD1 trial, so try to investigate all your options. All the best, Valerie (Phil’s wife)-
- May 6, 2013 at 4:03 pm
I totally agree with Valerie – there are trials for anti PD1 with open spots now and more coming. Yervoy and BRAF drugs will be there. This site has some excellents education materials as well as the webinars on the melanoma international foundation. Get a second opinion please! -
- May 6, 2013 at 4:03 pm
I totally agree with Valerie – there are trials for anti PD1 with open spots now and more coming. Yervoy and BRAF drugs will be there. This site has some excellents education materials as well as the webinars on the melanoma international foundation. Get a second opinion please! -
- May 6, 2013 at 4:03 pm
I totally agree with Valerie – there are trials for anti PD1 with open spots now and more coming. Yervoy and BRAF drugs will be there. This site has some excellents education materials as well as the webinars on the melanoma international foundation. Get a second opinion please!
-
- May 6, 2013 at 3:01 pm
Are you being treated at a melanoma center?? Leukine is not the first choice for someone in your husband’s situation! What about Ipi/Yervoy or AntiPD1 trial, what about Zelboraf if he is Braf positive. Even a try at high dose IL2 if he is in good condition! Many choices, but you need a melanoma specialist up on all the current treatments and trials. My first choice would be AntiPD1 trial, so try to investigate all your options. All the best, Valerie (Phil’s wife) -
- May 6, 2013 at 3:01 pm
Are you being treated at a melanoma center?? Leukine is not the first choice for someone in your husband’s situation! What about Ipi/Yervoy or AntiPD1 trial, what about Zelboraf if he is Braf positive. Even a try at high dose IL2 if he is in good condition! Many choices, but you need a melanoma specialist up on all the current treatments and trials. My first choice would be AntiPD1 trial, so try to investigate all your options. All the best, Valerie (Phil’s wife) -
- May 6, 2013 at 3:15 pm
From what you describe, it does appear that your husband has stage IV melanoma. Every case is unique, of course, but leukine is not usually the first treatment of choice for stage IV. I suggest that you get your husband to a melanoma specialty clinic as soon as possible. If you don't know of one in your area, ask the people on this forum; they usually have excellent suggestions about melanoma clinics and melamona oncologists.
It's also a very good idea to always get copies of every report (pathology reports, radiology reports, doctor's notes, etc) and a CD of any scan images (PET, CAT, MRI) and keep them all together. If you don't have any yet, go back to your doctors and request copies. If you're like the rest of us, you will be going from doctor to doctor for a while and it's very helpful to be able to produce your husband's medical records quickly rather than waiting for weeks to have them sent from institution to institution.
Unfortunately, you have now joined the ranks of us who have to educate ourselves about melanoma and its various treatment options. You and your husband will have to be your own health advocates and will sometimes have to push your medical team to perform tests or attempt treatments they may not be familiar with. This forum is a great place to get information and support. I also recommend that you view the melanoma webinars on the Melanoma International Foundation web site. They are sometimes complex and technical, but well worth the effort to try to understand.
-
- May 6, 2013 at 3:15 pm
From what you describe, it does appear that your husband has stage IV melanoma. Every case is unique, of course, but leukine is not usually the first treatment of choice for stage IV. I suggest that you get your husband to a melanoma specialty clinic as soon as possible. If you don't know of one in your area, ask the people on this forum; they usually have excellent suggestions about melanoma clinics and melamona oncologists.
It's also a very good idea to always get copies of every report (pathology reports, radiology reports, doctor's notes, etc) and a CD of any scan images (PET, CAT, MRI) and keep them all together. If you don't have any yet, go back to your doctors and request copies. If you're like the rest of us, you will be going from doctor to doctor for a while and it's very helpful to be able to produce your husband's medical records quickly rather than waiting for weeks to have them sent from institution to institution.
Unfortunately, you have now joined the ranks of us who have to educate ourselves about melanoma and its various treatment options. You and your husband will have to be your own health advocates and will sometimes have to push your medical team to perform tests or attempt treatments they may not be familiar with. This forum is a great place to get information and support. I also recommend that you view the melanoma webinars on the Melanoma International Foundation web site. They are sometimes complex and technical, but well worth the effort to try to understand.
-
- May 6, 2013 at 3:15 pm
From what you describe, it does appear that your husband has stage IV melanoma. Every case is unique, of course, but leukine is not usually the first treatment of choice for stage IV. I suggest that you get your husband to a melanoma specialty clinic as soon as possible. If you don't know of one in your area, ask the people on this forum; they usually have excellent suggestions about melanoma clinics and melamona oncologists.
It's also a very good idea to always get copies of every report (pathology reports, radiology reports, doctor's notes, etc) and a CD of any scan images (PET, CAT, MRI) and keep them all together. If you don't have any yet, go back to your doctors and request copies. If you're like the rest of us, you will be going from doctor to doctor for a while and it's very helpful to be able to produce your husband's medical records quickly rather than waiting for weeks to have them sent from institution to institution.
Unfortunately, you have now joined the ranks of us who have to educate ourselves about melanoma and its various treatment options. You and your husband will have to be your own health advocates and will sometimes have to push your medical team to perform tests or attempt treatments they may not be familiar with. This forum is a great place to get information and support. I also recommend that you view the melanoma webinars on the Melanoma International Foundation web site. They are sometimes complex and technical, but well worth the effort to try to understand.
-
- May 7, 2013 at 5:07 am
I am sorry to hear that melanoma has thrust itself into your life. Unfortunately, it has – in a big way. I could not agree more with the other posts, you need to see someone who specializes in melanoma. Treating melanoma is rapidly changing and many centers are not as current with many of the latest options to us. Good luck, I wish you the best of luck. Troy
-
- May 7, 2013 at 5:07 am
I am sorry to hear that melanoma has thrust itself into your life. Unfortunately, it has – in a big way. I could not agree more with the other posts, you need to see someone who specializes in melanoma. Treating melanoma is rapidly changing and many centers are not as current with many of the latest options to us. Good luck, I wish you the best of luck. Troy
-
- May 7, 2013 at 5:07 am
I am sorry to hear that melanoma has thrust itself into your life. Unfortunately, it has – in a big way. I could not agree more with the other posts, you need to see someone who specializes in melanoma. Treating melanoma is rapidly changing and many centers are not as current with many of the latest options to us. Good luck, I wish you the best of luck. Troy
-
- May 7, 2013 at 12:59 pm
As far as a melanoma center at which to seek a second opinion, Johns Hopkins is just down the road from the University of Maryland where you are currently getting treatment. I know from what you said that you like U. of M and its personnel and that you trust them. No reason not to. But in the long run you will be better off if you see what others might suggest even if you decide to continue your treatment at U. of M. Insurance companies provide support for seeking second opinions, though you should probably check with yours in advance. You should not feel shy about pushing with Johns Hopkins, if you choose to go in that direction, to get an appointment as soon as possible. See if they want the records in advance or hand carried for your first appointment. Though all pertaining to this disease is in some respects urgent, it is not so urgent that you should rush into a treatment before checking the alternatives And no need to be secretive about it with your friends at the University of Maryland. They will want what is best for your husband and know this is an important part of your seeking it.
-
- May 7, 2013 at 12:59 pm
As far as a melanoma center at which to seek a second opinion, Johns Hopkins is just down the road from the University of Maryland where you are currently getting treatment. I know from what you said that you like U. of M and its personnel and that you trust them. No reason not to. But in the long run you will be better off if you see what others might suggest even if you decide to continue your treatment at U. of M. Insurance companies provide support for seeking second opinions, though you should probably check with yours in advance. You should not feel shy about pushing with Johns Hopkins, if you choose to go in that direction, to get an appointment as soon as possible. See if they want the records in advance or hand carried for your first appointment. Though all pertaining to this disease is in some respects urgent, it is not so urgent that you should rush into a treatment before checking the alternatives And no need to be secretive about it with your friends at the University of Maryland. They will want what is best for your husband and know this is an important part of your seeking it.
-
- May 7, 2013 at 12:59 pm
As far as a melanoma center at which to seek a second opinion, Johns Hopkins is just down the road from the University of Maryland where you are currently getting treatment. I know from what you said that you like U. of M and its personnel and that you trust them. No reason not to. But in the long run you will be better off if you see what others might suggest even if you decide to continue your treatment at U. of M. Insurance companies provide support for seeking second opinions, though you should probably check with yours in advance. You should not feel shy about pushing with Johns Hopkins, if you choose to go in that direction, to get an appointment as soon as possible. See if they want the records in advance or hand carried for your first appointment. Though all pertaining to this disease is in some respects urgent, it is not so urgent that you should rush into a treatment before checking the alternatives And no need to be secretive about it with your friends at the University of Maryland. They will want what is best for your husband and know this is an important part of your seeking it.
Tagged: cutaneous melanoma
- You must be logged in to reply to this topic.