› Forums › Cutaneous Melanoma Community › scan results on vermurafenib
- This topic has 15 replies, 3 voices, and was last updated 13 years, 10 months ago by
lhaley.
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- November 11, 2011 at 4:08 am
Well I was a bit floored to say the least today. My dad as usual went for his scan results on his own (he wants this way).
According to his scan first month scan results (on paper) he had had a complete metabolic response and the oncologist told my dad (so he says – my dad does have hearing issues) that his tumors were not visible on scan.
WRONG.
Well I was a bit floored to say the least today. My dad as usual went for his scan results on his own (he wants this way).
According to his scan first month scan results (on paper) he had had a complete metabolic response and the oncologist told my dad (so he says – my dad does have hearing issues) that his tumors were not visible on scan.
WRONG.
Firstly we were confused that CMR was the same as CR – WRONG. He has had a partial response in that all the target leisons are shrinking and none are active on PET 30-70% shrinkage. We also find out that he has 2 nodules in a lung and in the subcutaneous part of the fat near the kidney. We never even knew these ones were there, but apparently they are not new since he started vermurfenib.
So….feeling like we've had a crash, when really the results are still positive. My dad just didn't ask the right questions and we were'nt there to ask them for him. There's so much one needs to learn medically in order to read between the lines of the oncologist.
Im feeling quite stressed out and sad because my dad was pretty emotional about it all. He understands that the results are still good, but he naively believed that he had no tumors visible on scan. I seems like my dad's MM is very aggressive and I am worried that things will turn nasty quickly. In saying that we won't give up and probably just need to get our heads around this new information and celebrate that things could already be nasty.
What a day in life of this dreaded disease, and I hope I don't offend anyone with my winging, because I know there are many of you out there fighting a tougher battle than my dad at the moment.
Nahmi from Melbourne
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- November 11, 2011 at 6:23 am
Nahmi, I am sorry to read about the confusion over the scan results. However, the news isn't all bad as your dad has had a partial response with some significant shrinkage.
Do you have a copy of the scan report(s)? I certainly think that it is important to have something in writing to help overcome any misunderstandings. It also is an idea to keep any relevant reports or test results in a folder or file, so that they can easily be found if needed.
Take care
Frank from Australia
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- November 11, 2011 at 6:23 am
Nahmi, I am sorry to read about the confusion over the scan results. However, the news isn't all bad as your dad has had a partial response with some significant shrinkage.
Do you have a copy of the scan report(s)? I certainly think that it is important to have something in writing to help overcome any misunderstandings. It also is an idea to keep any relevant reports or test results in a folder or file, so that they can easily be found if needed.
Take care
Frank from Australia
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- November 11, 2011 at 6:23 am
Nahmi, I am sorry to read about the confusion over the scan results. However, the news isn't all bad as your dad has had a partial response with some significant shrinkage.
Do you have a copy of the scan report(s)? I certainly think that it is important to have something in writing to help overcome any misunderstandings. It also is an idea to keep any relevant reports or test results in a folder or file, so that they can easily be found if needed.
Take care
Frank from Australia
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- November 11, 2011 at 9:00 am
Nahmi,
It does sound like your dad is having a partial responding. Unfortunately that with the braf drugs often there is a response but not that elusive NED. When they show you the scans they often don't tell every tumors. With the PET scan sometimes it might tell you that they are innumberable. Sometimes it is small where they can see something but not lighting up. In the past they can then see the tumor growing but was too small to light up at the time – they don't see it actually growing until the next scan and then they look back and then realize that the tumor was growing.
I've had a few spots in the lungs that going backwards they now can see it in retrospective in the past year. In my case they are still thinking it's lung junk but can now spot it that way so they can watch it. There are also different interpretations depending on who reads the scan. I had one scan that was told was clear. This time at the appointment I told my Dr that my arm was hurting (where the last site had surgery 6 months earlier). The wet read had been done but not final report. After I told the Dr that my arm was hurting the Dr called the radiologist to take another look. The SUV was very low and not totally forming into a tumor. They then had them do an mri to see a clearer picture. Mel was back. If I hadn't spoken up it would have been noticed 3 months later.
Your dad wants to be independent. Help your dad form a of questions. Ask for the Dr to also write the answers so your dad can review again at home and you also then have a chance to see the Dr's opinion. Last time after a procedure I was on valium. I had written the questions but Sammy listened but didn't think to write the answers, he knows that next time! I have been stage IV now for over 5 years. I'm the one that has done the reading ect. This is the first time where he's had to also become an active caretaker. I dread the time that he actually have to make a call with a question! He has started asking his own questions now and will also give the Dr his interpretations that he has seen what is going on at home that is different then my opinion. It's been a process.
I hope this long response (steroids have kept me awake at 4am) just helps you realize that part of this your dad is "hearing' what he wants to hear. Part of this is also a normal response to the braf drugs. A 2ml can grow but is still considered standard that it is stable. Maybe your dad is still being your dad and just is protecting you.
Linda
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- November 12, 2011 at 10:24 am
Linda,
congratulations on being at the 4yr mark, it certainly gives us hope.
Regarding dad's scan results we naturally assumed we would be given all the facts regarding new mets. Im sure that there are valid reasons why dad's oncologist did not tell us everything about the scan results – but wouldn't you think it's our right to know? If they don't mentions new mets, you assume there aren't any. The day my dad received his braf tablets we asked how the scan results were, the oncologist told us he didn't have the results on screen at the moment but there was nothing to worry about. I think any new growth is something to worry about it. This is what has really upset my parents (especially the lung tumor which I believe was 25mm) and has left us all wondering what else they haven't told us.
I sound like I'm ranting sorry, it's all so scarey.
Thank you for your insight on matters and take care.
Nahmi from Melbourne
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- November 12, 2011 at 10:24 am
Linda,
congratulations on being at the 4yr mark, it certainly gives us hope.
Regarding dad's scan results we naturally assumed we would be given all the facts regarding new mets. Im sure that there are valid reasons why dad's oncologist did not tell us everything about the scan results – but wouldn't you think it's our right to know? If they don't mentions new mets, you assume there aren't any. The day my dad received his braf tablets we asked how the scan results were, the oncologist told us he didn't have the results on screen at the moment but there was nothing to worry about. I think any new growth is something to worry about it. This is what has really upset my parents (especially the lung tumor which I believe was 25mm) and has left us all wondering what else they haven't told us.
I sound like I'm ranting sorry, it's all so scarey.
Thank you for your insight on matters and take care.
Nahmi from Melbourne
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- November 12, 2011 at 2:41 pm
I do think you should be told that much of a diffence. Sometimes not having the final read does give a slightly different view but that does seem large. I would request the last few scans so that you can compare yourself. I also go to a local oncologist and since my reads are always wet the local oncologist gets the final report, then I get a copy. I also get a cd of the scan and always keep a copy.
Like I said, 2mm is still considered stable, but 25 mm is considerably different.
It's ok to rant! We all do!!!!
Linda
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- November 12, 2011 at 2:41 pm
I do think you should be told that much of a diffence. Sometimes not having the final read does give a slightly different view but that does seem large. I would request the last few scans so that you can compare yourself. I also go to a local oncologist and since my reads are always wet the local oncologist gets the final report, then I get a copy. I also get a cd of the scan and always keep a copy.
Like I said, 2mm is still considered stable, but 25 mm is considerably different.
It's ok to rant! We all do!!!!
Linda
-
- November 12, 2011 at 2:41 pm
I do think you should be told that much of a diffence. Sometimes not having the final read does give a slightly different view but that does seem large. I would request the last few scans so that you can compare yourself. I also go to a local oncologist and since my reads are always wet the local oncologist gets the final report, then I get a copy. I also get a cd of the scan and always keep a copy.
Like I said, 2mm is still considered stable, but 25 mm is considerably different.
It's ok to rant! We all do!!!!
Linda
-
- November 12, 2011 at 10:24 am
Linda,
congratulations on being at the 4yr mark, it certainly gives us hope.
Regarding dad's scan results we naturally assumed we would be given all the facts regarding new mets. Im sure that there are valid reasons why dad's oncologist did not tell us everything about the scan results – but wouldn't you think it's our right to know? If they don't mentions new mets, you assume there aren't any. The day my dad received his braf tablets we asked how the scan results were, the oncologist told us he didn't have the results on screen at the moment but there was nothing to worry about. I think any new growth is something to worry about it. This is what has really upset my parents (especially the lung tumor which I believe was 25mm) and has left us all wondering what else they haven't told us.
I sound like I'm ranting sorry, it's all so scarey.
Thank you for your insight on matters and take care.
Nahmi from Melbourne
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- November 11, 2011 at 9:00 am
Nahmi,
It does sound like your dad is having a partial responding. Unfortunately that with the braf drugs often there is a response but not that elusive NED. When they show you the scans they often don't tell every tumors. With the PET scan sometimes it might tell you that they are innumberable. Sometimes it is small where they can see something but not lighting up. In the past they can then see the tumor growing but was too small to light up at the time – they don't see it actually growing until the next scan and then they look back and then realize that the tumor was growing.
I've had a few spots in the lungs that going backwards they now can see it in retrospective in the past year. In my case they are still thinking it's lung junk but can now spot it that way so they can watch it. There are also different interpretations depending on who reads the scan. I had one scan that was told was clear. This time at the appointment I told my Dr that my arm was hurting (where the last site had surgery 6 months earlier). The wet read had been done but not final report. After I told the Dr that my arm was hurting the Dr called the radiologist to take another look. The SUV was very low and not totally forming into a tumor. They then had them do an mri to see a clearer picture. Mel was back. If I hadn't spoken up it would have been noticed 3 months later.
Your dad wants to be independent. Help your dad form a of questions. Ask for the Dr to also write the answers so your dad can review again at home and you also then have a chance to see the Dr's opinion. Last time after a procedure I was on valium. I had written the questions but Sammy listened but didn't think to write the answers, he knows that next time! I have been stage IV now for over 5 years. I'm the one that has done the reading ect. This is the first time where he's had to also become an active caretaker. I dread the time that he actually have to make a call with a question! He has started asking his own questions now and will also give the Dr his interpretations that he has seen what is going on at home that is different then my opinion. It's been a process.
I hope this long response (steroids have kept me awake at 4am) just helps you realize that part of this your dad is "hearing' what he wants to hear. Part of this is also a normal response to the braf drugs. A 2ml can grow but is still considered standard that it is stable. Maybe your dad is still being your dad and just is protecting you.
Linda
-
- November 11, 2011 at 9:00 am
Nahmi,
It does sound like your dad is having a partial responding. Unfortunately that with the braf drugs often there is a response but not that elusive NED. When they show you the scans they often don't tell every tumors. With the PET scan sometimes it might tell you that they are innumberable. Sometimes it is small where they can see something but not lighting up. In the past they can then see the tumor growing but was too small to light up at the time – they don't see it actually growing until the next scan and then they look back and then realize that the tumor was growing.
I've had a few spots in the lungs that going backwards they now can see it in retrospective in the past year. In my case they are still thinking it's lung junk but can now spot it that way so they can watch it. There are also different interpretations depending on who reads the scan. I had one scan that was told was clear. This time at the appointment I told my Dr that my arm was hurting (where the last site had surgery 6 months earlier). The wet read had been done but not final report. After I told the Dr that my arm was hurting the Dr called the radiologist to take another look. The SUV was very low and not totally forming into a tumor. They then had them do an mri to see a clearer picture. Mel was back. If I hadn't spoken up it would have been noticed 3 months later.
Your dad wants to be independent. Help your dad form a of questions. Ask for the Dr to also write the answers so your dad can review again at home and you also then have a chance to see the Dr's opinion. Last time after a procedure I was on valium. I had written the questions but Sammy listened but didn't think to write the answers, he knows that next time! I have been stage IV now for over 5 years. I'm the one that has done the reading ect. This is the first time where he's had to also become an active caretaker. I dread the time that he actually have to make a call with a question! He has started asking his own questions now and will also give the Dr his interpretations that he has seen what is going on at home that is different then my opinion. It's been a process.
I hope this long response (steroids have kept me awake at 4am) just helps you realize that part of this your dad is "hearing' what he wants to hear. Part of this is also a normal response to the braf drugs. A 2ml can grow but is still considered standard that it is stable. Maybe your dad is still being your dad and just is protecting you.
Linda
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Tagged: cutaneous melanoma
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