› Forums › General Melanoma Community › Oncologist appointment today
- This topic has 15 replies, 3 voices, and was last updated 10 years, 2 months ago by
POW.
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- March 20, 2014 at 7:51 pm
My husband had his first oncologist appointment today since all this started back up. (See previous post for more detail, but the short story is: he was stage 2 since 2008 until Feb 24th this year when we found out he had one brain tumor; it was removed by surgery Feb 26th.)
The recommendation was:
Gamma Knife – we have MRI and radiation oncologist appointment March 31st. (Not sure when the actual procedure will be yet. How long do you usually have to wait after surgery? I have a call in to ask them.)
Scans every three months, starting May 14th with a PET. (He had a slew of scans one month ago, but not a pet.)
They will go ahead with genetic testing for BRAF and all.
Does this plan seem reasonable?
He said that there is an 85-90% chance that he will get additional tumors at some point (I already figured that); however, my husband was in good spirits after the appointment because the only thing he cares about right now is coming off the steroids, which is is tapering from now. He is horribly miserable on them and has gain 29 pounds since March 3rd.
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- March 20, 2014 at 10:22 pm
Rear KatB
I am glad you had a good appointment with the oncologist. I think the plan sounds reasonable. Will your husband have the MRI prior to the meeting with the radiation oncologist? Did you have any discussion about Yervoy or Braf/Mek treatment or clinical trials? One of the key elements in dealing with this is to try to plan a step or two ahead. That is if you can. I can tell you are an excellent advocate for your husband. Use all the resources you can. Ask more questions on this forum and the MIF forum. Write down the questions you have for the docs. Good luck.
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- March 21, 2014 at 2:00 pm
The MRI is scheduled for the morning and the meeting with the radiation oncologist will be that afternoon.
His doctor doesn't think he needs Yervoy or Braf/Mek treatment yet. He did check on a trial that they are participaing in – the one I found and posted the other day which is for those who had their tumor removed by surgery: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional&protocolsearchid=12531762 but apparently they don't accept you if it was a brain tumor. 🙁
I'm going to keep looking into other trials.
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- March 21, 2014 at 2:00 pm
The MRI is scheduled for the morning and the meeting with the radiation oncologist will be that afternoon.
His doctor doesn't think he needs Yervoy or Braf/Mek treatment yet. He did check on a trial that they are participaing in – the one I found and posted the other day which is for those who had their tumor removed by surgery: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional&protocolsearchid=12531762 but apparently they don't accept you if it was a brain tumor. 🙁
I'm going to keep looking into other trials.
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- March 21, 2014 at 2:00 pm
The MRI is scheduled for the morning and the meeting with the radiation oncologist will be that afternoon.
His doctor doesn't think he needs Yervoy or Braf/Mek treatment yet. He did check on a trial that they are participaing in – the one I found and posted the other day which is for those who had their tumor removed by surgery: http://www.cancer.gov/clinicaltrials/search/view?cdrid=692568&version=HealthProfessional&protocolsearchid=12531762 but apparently they don't accept you if it was a brain tumor. 🙁
I'm going to keep looking into other trials.
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- March 20, 2014 at 10:22 pm
Rear KatB
I am glad you had a good appointment with the oncologist. I think the plan sounds reasonable. Will your husband have the MRI prior to the meeting with the radiation oncologist? Did you have any discussion about Yervoy or Braf/Mek treatment or clinical trials? One of the key elements in dealing with this is to try to plan a step or two ahead. That is if you can. I can tell you are an excellent advocate for your husband. Use all the resources you can. Ask more questions on this forum and the MIF forum. Write down the questions you have for the docs. Good luck.
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- March 20, 2014 at 10:22 pm
Rear KatB
I am glad you had a good appointment with the oncologist. I think the plan sounds reasonable. Will your husband have the MRI prior to the meeting with the radiation oncologist? Did you have any discussion about Yervoy or Braf/Mek treatment or clinical trials? One of the key elements in dealing with this is to try to plan a step or two ahead. That is if you can. I can tell you are an excellent advocate for your husband. Use all the resources you can. Ask more questions on this forum and the MIF forum. Write down the questions you have for the docs. Good luck.
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- March 21, 2014 at 12:02 pm
Following up the neurosurgery with Gamma Knife sounds like a smart step. However, with an "85-90% chance" of recurrence, I'm surprised that your oncologist is not recommending any systemic treatments. I know that you were looking for a melanoma specialist in North Carolina a few weeks ago, did you find one? Is the specialist the one who is recommending "watch and wait"?
There are many clinical trials available for Stage IV patients. Unfortunately (in your case) not so many for Stage IV NED patients. However, there are some. The hard part is finding them. And as Brent said, your husband probably qualifies for Yervoy.
I strongly suggest that you get a second opinion about your husband's treatment options. Second or even third opinions are always a good idea with Stage IV melanoma, especially when the first opinion is "watch and wait". It would also be very helpful if you copied the diagonsis and treatment history you posted before and put it in your profile. That way teh people here can quickly find it so that they can give you the most helpful information.
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- March 21, 2014 at 2:08 pm
The doctor we was yesterday was his original specialst that we've gone to for 5+ years. He is the one who recommends the gamma knife and then watch and wait.
I will try to get us in at the facility in Charlotte soon for a 2nd opinion.
And I will update my profile. 🙂
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- March 21, 2014 at 5:31 pm
If you are going to go for a second opinion, it would be best to go to an NCI-designated cancer center. The closest one to you would be Wake Forest Comprehensive Cancer Center in Winston-Salem, NC. I remember reading posts from a couple of members here who were very happy with the care they received there. Perhaps your primary care physician could set you up with Wake Forest more quickly than if you called yourself.
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- March 21, 2014 at 5:31 pm
If you are going to go for a second opinion, it would be best to go to an NCI-designated cancer center. The closest one to you would be Wake Forest Comprehensive Cancer Center in Winston-Salem, NC. I remember reading posts from a couple of members here who were very happy with the care they received there. Perhaps your primary care physician could set you up with Wake Forest more quickly than if you called yourself.
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- March 21, 2014 at 5:31 pm
If you are going to go for a second opinion, it would be best to go to an NCI-designated cancer center. The closest one to you would be Wake Forest Comprehensive Cancer Center in Winston-Salem, NC. I remember reading posts from a couple of members here who were very happy with the care they received there. Perhaps your primary care physician could set you up with Wake Forest more quickly than if you called yourself.
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- March 21, 2014 at 2:08 pm
The doctor we was yesterday was his original specialst that we've gone to for 5+ years. He is the one who recommends the gamma knife and then watch and wait.
I will try to get us in at the facility in Charlotte soon for a 2nd opinion.
And I will update my profile. 🙂
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- March 21, 2014 at 2:08 pm
The doctor we was yesterday was his original specialst that we've gone to for 5+ years. He is the one who recommends the gamma knife and then watch and wait.
I will try to get us in at the facility in Charlotte soon for a 2nd opinion.
And I will update my profile. 🙂
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- March 21, 2014 at 12:02 pm
Following up the neurosurgery with Gamma Knife sounds like a smart step. However, with an "85-90% chance" of recurrence, I'm surprised that your oncologist is not recommending any systemic treatments. I know that you were looking for a melanoma specialist in North Carolina a few weeks ago, did you find one? Is the specialist the one who is recommending "watch and wait"?
There are many clinical trials available for Stage IV patients. Unfortunately (in your case) not so many for Stage IV NED patients. However, there are some. The hard part is finding them. And as Brent said, your husband probably qualifies for Yervoy.
I strongly suggest that you get a second opinion about your husband's treatment options. Second or even third opinions are always a good idea with Stage IV melanoma, especially when the first opinion is "watch and wait". It would also be very helpful if you copied the diagonsis and treatment history you posted before and put it in your profile. That way teh people here can quickly find it so that they can give you the most helpful information.
-
- March 21, 2014 at 12:02 pm
Following up the neurosurgery with Gamma Knife sounds like a smart step. However, with an "85-90% chance" of recurrence, I'm surprised that your oncologist is not recommending any systemic treatments. I know that you were looking for a melanoma specialist in North Carolina a few weeks ago, did you find one? Is the specialist the one who is recommending "watch and wait"?
There are many clinical trials available for Stage IV patients. Unfortunately (in your case) not so many for Stage IV NED patients. However, there are some. The hard part is finding them. And as Brent said, your husband probably qualifies for Yervoy.
I strongly suggest that you get a second opinion about your husband's treatment options. Second or even third opinions are always a good idea with Stage IV melanoma, especially when the first opinion is "watch and wait". It would also be very helpful if you copied the diagonsis and treatment history you posted before and put it in your profile. That way teh people here can quickly find it so that they can give you the most helpful information.
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