› Forums › General Melanoma Community › Anyone done the DecisionDX test?
- This topic has 48 replies, 7 voices, and was last updated 9 years, 3 months ago by
Jennab0525.
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- February 20, 2016 at 3:03 am
Hi everyone!! First I must say that I was newly diagnosed Stage IIIB in October and everyone on this board has been so incredibly helpful on my journey through this horrific diagnosis! I read this board daily and although most of you don't know me, I feel I know you all so well!! Your knowledge, courage and strength has given me more comfort than you will ever know! God bless every one of you!
Now on to my question! My oncologist and I have decided to take the watch and wait approach. I have one clear scan under my belt and my next one is March 25th. During my last appt he suggested we run my tumor through the new DecisionDX testing. If I come back as a Class 2 (high likelihood of recurrence) we will begin Opdivo. I came home and started researching what little info I could find on the testing. It appears to be very accurate in the small study that has been done (about 300 people) but most of their data was based on stage 1 and 2 patients. The info I found said that of the stage 3 people they tested "all but one" was classified as Class 2. Class 2 patients have a 70% chance of recurrence! If that is true, why are there so many people who are stage 3 who never have a recurrence? From reading on this board it seems there are so many stage 3 survivors on this board that are NED for many years. Far greater than 30%! I'm confused. I just don't know how much credibility I should give to the results (which I haven't gotten yet). I'm assuming they are going to come back Class 2 so I will probably need treatment. Any Stage 3 people who have had this test and came back Class 1? Class 1 people have a 3% chance of recurrence. Seems a huge swing between the two classifications!
Any input or knowledge on this testing is appreciated!
- Replies
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- February 20, 2016 at 10:27 am
Hi, I am 3c. My melanoma specialist shared all the relevant research papers with me when I was making my treatment decisions, which was good for me as I did biochemistry and cell pathology at university many decades ago.
I did a lot of staring at graphs.I focused on the fact that 3cs who had the affected lymph nodes removed had about an 80% chance of the melanoma coming back. Now that was 3c not 3b but it fits with the information you have found about the DecisionDX testing.
This is how I think about it. There is a massive different between stage 3 and stages 1 and 2. If your cancer cells have made it to your lymph nodes (i.e. you are stage 3) then they are the type that will make it elsewhere in your body. Some people are lucky and the surgeon gets all those nasty mobile cancer cells but in the majority of cases a few have already gone further.
OK, I am going to address the point about stage 3 survivors on this board. I shall use as my example stage 3c people like me. Imagine 100 stage 3c people. 20 stay at stage 3c for years. Those are your long term stage 3c survivors – your 3c NED group. 80 become stage 4. They now identifiy themselves as stage 4. This means that many of the stage 3c survivors are stage 3c NED only because the majority have re-identified themselves as stage 4.
If you have the test done you will (a) have more information and (b) be contributing to the growing data about the DecisionDX test.
How many treatments of Opdivo is your doctor suggesting? I have been told by my doctor that if my cancer begins progressing again she will be offering me Opdico (nivolumab) and that I would have to receive an infusion every few weeks. I would be able to tell if the Opidico was working because I would have tumours to monitor. If it was working, I would conntinue having the infusions indefinitely.
You don't have any tumours to monitor. Have you asked your doctor how they would know if the Opidico was having a positive effect?
I am in the UK. We have Cancer Rsearch UK here and they have an excellent website. This is their page about Opidio/nivolumab.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/nivolumab
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- February 20, 2016 at 10:27 am
Hi, I am 3c. My melanoma specialist shared all the relevant research papers with me when I was making my treatment decisions, which was good for me as I did biochemistry and cell pathology at university many decades ago.
I did a lot of staring at graphs.I focused on the fact that 3cs who had the affected lymph nodes removed had about an 80% chance of the melanoma coming back. Now that was 3c not 3b but it fits with the information you have found about the DecisionDX testing.
This is how I think about it. There is a massive different between stage 3 and stages 1 and 2. If your cancer cells have made it to your lymph nodes (i.e. you are stage 3) then they are the type that will make it elsewhere in your body. Some people are lucky and the surgeon gets all those nasty mobile cancer cells but in the majority of cases a few have already gone further.
OK, I am going to address the point about stage 3 survivors on this board. I shall use as my example stage 3c people like me. Imagine 100 stage 3c people. 20 stay at stage 3c for years. Those are your long term stage 3c survivors – your 3c NED group. 80 become stage 4. They now identifiy themselves as stage 4. This means that many of the stage 3c survivors are stage 3c NED only because the majority have re-identified themselves as stage 4.
If you have the test done you will (a) have more information and (b) be contributing to the growing data about the DecisionDX test.
How many treatments of Opdivo is your doctor suggesting? I have been told by my doctor that if my cancer begins progressing again she will be offering me Opdico (nivolumab) and that I would have to receive an infusion every few weeks. I would be able to tell if the Opidico was working because I would have tumours to monitor. If it was working, I would conntinue having the infusions indefinitely.
You don't have any tumours to monitor. Have you asked your doctor how they would know if the Opidico was having a positive effect?
I am in the UK. We have Cancer Rsearch UK here and they have an excellent website. This is their page about Opidio/nivolumab.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/nivolumab
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- February 20, 2016 at 1:28 pm
Thank you so much for your reply! You bring up a very good point about the Opdivo treatment. My oncologists reasoning for doing Opdivo is to us it as a preventative similar to Ippi or Interferon. He said Opdivo has far less side effects than the other drugs. You are correct though that without tumors to monitor we won't know if it's working or not but the hope would be that if the test comes back as a Class 2 we are just lessening my percentage of the cancer returning. My concern with the Opdivo is from what I have read it can cause some serious side effects that can be permanent. Then I question if it's worth doing since right now I'm perfectly healthy!
I think my Oncologist wants to do this testing because he (as well as my surgeon and dermatologist) question whether I am a true Stage 3b. My tumor presented with ulceration however the doctors question if it was truly ulcerated since I had it frozen months prior to its removal which could have made it appear ulcerated but it actually wasn't. Also I only had two isolated tumor cells in one node which they feel is so minimal that they would almost classify my node as negative (in breast cancer patients that would be the case). So I think he is just trying to get a more clear picture of my actual prognosis.
I guess I'm just hoping I will defy the odds and be one of the lucky Class 1 people and this will probably never return but I also want to be realistic and prepare myself for the worst. Like I told my husband, thinking that I could have Stage 3 cancer and survive without any treatment is very wishful thinking!
Jenna
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- February 20, 2016 at 1:28 pm
Thank you so much for your reply! You bring up a very good point about the Opdivo treatment. My oncologists reasoning for doing Opdivo is to us it as a preventative similar to Ippi or Interferon. He said Opdivo has far less side effects than the other drugs. You are correct though that without tumors to monitor we won't know if it's working or not but the hope would be that if the test comes back as a Class 2 we are just lessening my percentage of the cancer returning. My concern with the Opdivo is from what I have read it can cause some serious side effects that can be permanent. Then I question if it's worth doing since right now I'm perfectly healthy!
I think my Oncologist wants to do this testing because he (as well as my surgeon and dermatologist) question whether I am a true Stage 3b. My tumor presented with ulceration however the doctors question if it was truly ulcerated since I had it frozen months prior to its removal which could have made it appear ulcerated but it actually wasn't. Also I only had two isolated tumor cells in one node which they feel is so minimal that they would almost classify my node as negative (in breast cancer patients that would be the case). So I think he is just trying to get a more clear picture of my actual prognosis.
I guess I'm just hoping I will defy the odds and be one of the lucky Class 1 people and this will probably never return but I also want to be realistic and prepare myself for the worst. Like I told my husband, thinking that I could have Stage 3 cancer and survive without any treatment is very wishful thinking!
Jenna
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- February 20, 2016 at 6:19 pm
Thank you so much! He is an amazing Doctor and I trust him so much! Even gives all his patients his personal cell number so we can call anytime we need him. I've actually called him once and he answered on the second ring! 🙂
Well that's the question of the day! Ha! At the time he suggested the test I was all for it because I want to know for sure if this is going to come back! But now as the weeks have progressed I've been doing so great! I hardly even think about the melanoma and my life is finally getting back to normal. I feel like once I get these results it's going to blow my world apart again. I just don't want to deal with melanoma again unless I have to and right now it's so peaceful not dealing with it because I'm NED. But it's too late now because I'm getting the results whether I want them or not. Then tough decisions will have to be made again!
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- February 20, 2016 at 6:19 pm
Thank you so much! He is an amazing Doctor and I trust him so much! Even gives all his patients his personal cell number so we can call anytime we need him. I've actually called him once and he answered on the second ring! 🙂
Well that's the question of the day! Ha! At the time he suggested the test I was all for it because I want to know for sure if this is going to come back! But now as the weeks have progressed I've been doing so great! I hardly even think about the melanoma and my life is finally getting back to normal. I feel like once I get these results it's going to blow my world apart again. I just don't want to deal with melanoma again unless I have to and right now it's so peaceful not dealing with it because I'm NED. But it's too late now because I'm getting the results whether I want them or not. Then tough decisions will have to be made again!
-
- February 20, 2016 at 6:19 pm
Thank you so much! He is an amazing Doctor and I trust him so much! Even gives all his patients his personal cell number so we can call anytime we need him. I've actually called him once and he answered on the second ring! 🙂
Well that's the question of the day! Ha! At the time he suggested the test I was all for it because I want to know for sure if this is going to come back! But now as the weeks have progressed I've been doing so great! I hardly even think about the melanoma and my life is finally getting back to normal. I feel like once I get these results it's going to blow my world apart again. I just don't want to deal with melanoma again unless I have to and right now it's so peaceful not dealing with it because I'm NED. But it's too late now because I'm getting the results whether I want them or not. Then tough decisions will have to be made again!
-
- February 20, 2016 at 1:28 pm
Thank you so much for your reply! You bring up a very good point about the Opdivo treatment. My oncologists reasoning for doing Opdivo is to us it as a preventative similar to Ippi or Interferon. He said Opdivo has far less side effects than the other drugs. You are correct though that without tumors to monitor we won't know if it's working or not but the hope would be that if the test comes back as a Class 2 we are just lessening my percentage of the cancer returning. My concern with the Opdivo is from what I have read it can cause some serious side effects that can be permanent. Then I question if it's worth doing since right now I'm perfectly healthy!
I think my Oncologist wants to do this testing because he (as well as my surgeon and dermatologist) question whether I am a true Stage 3b. My tumor presented with ulceration however the doctors question if it was truly ulcerated since I had it frozen months prior to its removal which could have made it appear ulcerated but it actually wasn't. Also I only had two isolated tumor cells in one node which they feel is so minimal that they would almost classify my node as negative (in breast cancer patients that would be the case). So I think he is just trying to get a more clear picture of my actual prognosis.
I guess I'm just hoping I will defy the odds and be one of the lucky Class 1 people and this will probably never return but I also want to be realistic and prepare myself for the worst. Like I told my husband, thinking that I could have Stage 3 cancer and survive without any treatment is very wishful thinking!
Jenna
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- February 20, 2016 at 5:22 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
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- February 20, 2016 at 5:22 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
-
- February 20, 2016 at 5:22 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
-
- February 20, 2016 at 5:23 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
-
- February 20, 2016 at 5:23 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
-
- February 20, 2016 at 5:23 pm
The truth is, we do not know. Two contained substantial tumours. I am a very atypical case. I have an extreme phobia of doctors and hospitals [because they contain doctors]. I had the initial lesion removed (day surgery, no admission, most terrifying experience of my life) but no other surgery. Initially, based on a CT scan I was staged as stage 4 and Ipi was suggested, which only required me to visit the hospital as an outpatient four times and be treated by nurses, which I could do. Then I had a PET scan and it became clear that the two remote lumps weren't active (goodness knows what they are – I am not volunteering for a biopsy!). Being 3c rather than 4 meant surgery rather than Ipi but I couldn't do that because it required days in hospital. In the end, the team decided the phobia made me 'inoperable' and let me have the Ipi and I turned out to be a responder.
I did ask about radiation but my oncologist (who is fantastic given that she has to stay on the other side of the consulting room because I am so terrified of her) said they did not use it.
-
- February 20, 2016 at 10:27 am
Hi, I am 3c. My melanoma specialist shared all the relevant research papers with me when I was making my treatment decisions, which was good for me as I did biochemistry and cell pathology at university many decades ago.
I did a lot of staring at graphs.I focused on the fact that 3cs who had the affected lymph nodes removed had about an 80% chance of the melanoma coming back. Now that was 3c not 3b but it fits with the information you have found about the DecisionDX testing.
This is how I think about it. There is a massive different between stage 3 and stages 1 and 2. If your cancer cells have made it to your lymph nodes (i.e. you are stage 3) then they are the type that will make it elsewhere in your body. Some people are lucky and the surgeon gets all those nasty mobile cancer cells but in the majority of cases a few have already gone further.
OK, I am going to address the point about stage 3 survivors on this board. I shall use as my example stage 3c people like me. Imagine 100 stage 3c people. 20 stay at stage 3c for years. Those are your long term stage 3c survivors – your 3c NED group. 80 become stage 4. They now identifiy themselves as stage 4. This means that many of the stage 3c survivors are stage 3c NED only because the majority have re-identified themselves as stage 4.
If you have the test done you will (a) have more information and (b) be contributing to the growing data about the DecisionDX test.
How many treatments of Opdivo is your doctor suggesting? I have been told by my doctor that if my cancer begins progressing again she will be offering me Opdico (nivolumab) and that I would have to receive an infusion every few weeks. I would be able to tell if the Opidico was working because I would have tumours to monitor. If it was working, I would conntinue having the infusions indefinitely.
You don't have any tumours to monitor. Have you asked your doctor how they would know if the Opidico was having a positive effect?
I am in the UK. We have Cancer Rsearch UK here and they have an excellent website. This is their page about Opidio/nivolumab.
http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/nivolumab
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- February 20, 2016 at 5:29 pm
Is Opdivo (nivo) available for stage 3 patients? I thought only Yervoy (ipi) was available. Unless you're talking about a trial? Does coming back as Class 2 change it and make it so insurance would allow Opdivo maybe? Just curious, thanks 🙂
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- February 20, 2016 at 5:29 pm
Is Opdivo (nivo) available for stage 3 patients? I thought only Yervoy (ipi) was available. Unless you're talking about a trial? Does coming back as Class 2 change it and make it so insurance would allow Opdivo maybe? Just curious, thanks 🙂
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- February 20, 2016 at 5:29 pm
Is Opdivo (nivo) available for stage 3 patients? I thought only Yervoy (ipi) was available. Unless you're talking about a trial? Does coming back as Class 2 change it and make it so insurance would allow Opdivo maybe? Just curious, thanks 🙂
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- February 20, 2016 at 6:12 pm
Hi Jenni! Yes according to my oncologist it was recently approved for Stage 3. Doesn't dound like its a trial. Not really sure how the DecisionDX affects insurance but I do know that whatever my insurance doesn't pay for Castle (who the test is through) covers the rest so it is free to me. I'm assuming because it's new and they want people to try it?
Ugh to be honest I haven't even thought about insurance coverage for any drug treatments. I just know I do not want to do them!! They all sound pretty horrible to me. I swear I get side effects from everything I take so I'm sure I would be one of the unlucky ones to have horrific side effects from any adjuvant treatment. That's why I've been avoiding it like the plague! 🙂 my mom keeps saying "if it ain't broke don't fix it" and like I said right now I'm perfectly healthy so I'm trying to determine if I should continue on the watch and wait and then move on to treatment if I progress. All my docs keep telling me I have such a good prognosis. That's why I'm terrified of the results of this DecisionDX test. Maybe I just would be better off not knowing. :/
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- February 20, 2016 at 9:26 pm
Hi Jennab0525-
I ahd the test done in Sept. 2013 when fist diagnosed as 1B…It was a very odd situation…I went to see a surgical oncolgist when first found and inital path report came back, prior to having the WLE. This by the way was NOT the DOC whom I ultimately chose…
He asked if would be willing to have this test done……he explained it was in its early stages…After completing my surgery, whcih ended being done at MSK I started calling back to the guy who wordered this Decision DX test…I continued to ask for the resluts and he would never give them to me. AFter quite some time, and few not so nice phone calls, his staff finally called me back and said that the doc the reuslts didnt mean anyhtig, and that every patient to whom he gave the test came back with same results and he wasnt considering it to be a reliable test…I did later ask about this test to both MSK and NYU and both sadi it was early and they werent sing it or paying it much attention.
Not sure if anything has changed, so cant comment on current opions, mine were from late 2014.
aLSo, my insurance Denied it, and Castle ended up laying for it…
Alos, reagrding NIVO being approved for stage III…..I dont think that is the case though some DOCS are saying they can order it and get it approved in certain cased, I dont believe it has been "formally" approved for stage III adjuvant treatment.
Hope some of this helpful!
best,
jenny
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- February 20, 2016 at 9:53 pm
No I understood just fine Jenny! Thanks for the reply! So did you ever get your results? Were you a class 2? Did the melanoma return?
Jenna
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- February 20, 2016 at 11:22 pm
I did the Maintrac Circulation Tumour Cell test when i was in Germany.It measures how much dead tumor cells are floating around your blood stream. There are similar tests in the US and they are pretty accurate.
I was stage 3 at the time and that test qute accurately predicted i would progress to stage 4 which happened about 8 months later.
The problem is that even thou i knew it there wasnt much i could do about it other than doing a bunch of alternative treatments like hypertherma. mistletoe therapy, vitamins diet , lifestyle etc
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- February 20, 2016 at 11:22 pm
I did the Maintrac Circulation Tumour Cell test when i was in Germany.It measures how much dead tumor cells are floating around your blood stream. There are similar tests in the US and they are pretty accurate.
I was stage 3 at the time and that test qute accurately predicted i would progress to stage 4 which happened about 8 months later.
The problem is that even thou i knew it there wasnt much i could do about it other than doing a bunch of alternative treatments like hypertherma. mistletoe therapy, vitamins diet , lifestyle etc
-
- February 20, 2016 at 11:22 pm
I did the Maintrac Circulation Tumour Cell test when i was in Germany.It measures how much dead tumor cells are floating around your blood stream. There are similar tests in the US and they are pretty accurate.
I was stage 3 at the time and that test qute accurately predicted i would progress to stage 4 which happened about 8 months later.
The problem is that even thou i knew it there wasnt much i could do about it other than doing a bunch of alternative treatments like hypertherma. mistletoe therapy, vitamins diet , lifestyle etc
-
- February 20, 2016 at 9:53 pm
No I understood just fine Jenny! Thanks for the reply! So did you ever get your results? Were you a class 2? Did the melanoma return?
Jenna
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- February 20, 2016 at 9:53 pm
No I understood just fine Jenny! Thanks for the reply! So did you ever get your results? Were you a class 2? Did the melanoma return?
Jenna
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- February 20, 2016 at 9:26 pm
Hi Jennab0525-
I ahd the test done in Sept. 2013 when fist diagnosed as 1B…It was a very odd situation…I went to see a surgical oncolgist when first found and inital path report came back, prior to having the WLE. This by the way was NOT the DOC whom I ultimately chose…
He asked if would be willing to have this test done……he explained it was in its early stages…After completing my surgery, whcih ended being done at MSK I started calling back to the guy who wordered this Decision DX test…I continued to ask for the resluts and he would never give them to me. AFter quite some time, and few not so nice phone calls, his staff finally called me back and said that the doc the reuslts didnt mean anyhtig, and that every patient to whom he gave the test came back with same results and he wasnt considering it to be a reliable test…I did later ask about this test to both MSK and NYU and both sadi it was early and they werent sing it or paying it much attention.
Not sure if anything has changed, so cant comment on current opions, mine were from late 2014.
aLSo, my insurance Denied it, and Castle ended up laying for it…
Alos, reagrding NIVO being approved for stage III…..I dont think that is the case though some DOCS are saying they can order it and get it approved in certain cased, I dont believe it has been "formally" approved for stage III adjuvant treatment.
Hope some of this helpful!
best,
jenny
-
- February 20, 2016 at 9:26 pm
Hi Jennab0525-
I ahd the test done in Sept. 2013 when fist diagnosed as 1B…It was a very odd situation…I went to see a surgical oncolgist when first found and inital path report came back, prior to having the WLE. This by the way was NOT the DOC whom I ultimately chose…
He asked if would be willing to have this test done……he explained it was in its early stages…After completing my surgery, whcih ended being done at MSK I started calling back to the guy who wordered this Decision DX test…I continued to ask for the resluts and he would never give them to me. AFter quite some time, and few not so nice phone calls, his staff finally called me back and said that the doc the reuslts didnt mean anyhtig, and that every patient to whom he gave the test came back with same results and he wasnt considering it to be a reliable test…I did later ask about this test to both MSK and NYU and both sadi it was early and they werent sing it or paying it much attention.
Not sure if anything has changed, so cant comment on current opions, mine were from late 2014.
aLSo, my insurance Denied it, and Castle ended up laying for it…
Alos, reagrding NIVO being approved for stage III…..I dont think that is the case though some DOCS are saying they can order it and get it approved in certain cased, I dont believe it has been "formally" approved for stage III adjuvant treatment.
Hope some of this helpful!
best,
jenny
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- February 20, 2016 at 10:47 pm
I totally understand how scary the side effects sound. I just finished my 4th infusion of Ipi (Yervoy) and surprisingly have not had any major side effects, mostly just fatigue. I am 3b and instead of watch and wait I decided to do Yervoy since it just got approved for our stage in Oct and it just seemed like strangly perfect timing. I'm 29, pretty healthy, and had no clue how my body would react to doing the Ipi. In my mind, I thought since I am young and healthy that I should be able to take it with minor side effects and any side effect that popped up would be easily taken care of. I guess I was right? Of course, everyone is different and everyone'd bodies react differently.
If Opdivo is available to you after you get your results, then that's great to have that option. Most drug companies help pay for the drugs with programs, they like to track how patients are doing for drugs that are so new. But, even then, insurance usually has to approve the use of that drug for you. I kind of laughed when I got a letter from Blue Shield approving my doctors request for me to do Yervoy… It said something like "we find it medically neccessary".. Um, yeah, I sure hope so! Ha. I have to find the humor in all the madness sometimes.
I really hope the results of your test are good, but even if they aren't and you have to start treatment, keep your positive attitude going and you'll get through it easier than you might think 🙂
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- February 20, 2016 at 10:47 pm
I totally understand how scary the side effects sound. I just finished my 4th infusion of Ipi (Yervoy) and surprisingly have not had any major side effects, mostly just fatigue. I am 3b and instead of watch and wait I decided to do Yervoy since it just got approved for our stage in Oct and it just seemed like strangly perfect timing. I'm 29, pretty healthy, and had no clue how my body would react to doing the Ipi. In my mind, I thought since I am young and healthy that I should be able to take it with minor side effects and any side effect that popped up would be easily taken care of. I guess I was right? Of course, everyone is different and everyone'd bodies react differently.
If Opdivo is available to you after you get your results, then that's great to have that option. Most drug companies help pay for the drugs with programs, they like to track how patients are doing for drugs that are so new. But, even then, insurance usually has to approve the use of that drug for you. I kind of laughed when I got a letter from Blue Shield approving my doctors request for me to do Yervoy… It said something like "we find it medically neccessary".. Um, yeah, I sure hope so! Ha. I have to find the humor in all the madness sometimes.
I really hope the results of your test are good, but even if they aren't and you have to start treatment, keep your positive attitude going and you'll get through it easier than you might think 🙂
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- February 20, 2016 at 10:47 pm
I totally understand how scary the side effects sound. I just finished my 4th infusion of Ipi (Yervoy) and surprisingly have not had any major side effects, mostly just fatigue. I am 3b and instead of watch and wait I decided to do Yervoy since it just got approved for our stage in Oct and it just seemed like strangly perfect timing. I'm 29, pretty healthy, and had no clue how my body would react to doing the Ipi. In my mind, I thought since I am young and healthy that I should be able to take it with minor side effects and any side effect that popped up would be easily taken care of. I guess I was right? Of course, everyone is different and everyone'd bodies react differently.
If Opdivo is available to you after you get your results, then that's great to have that option. Most drug companies help pay for the drugs with programs, they like to track how patients are doing for drugs that are so new. But, even then, insurance usually has to approve the use of that drug for you. I kind of laughed when I got a letter from Blue Shield approving my doctors request for me to do Yervoy… It said something like "we find it medically neccessary".. Um, yeah, I sure hope so! Ha. I have to find the humor in all the madness sometimes.
I really hope the results of your test are good, but even if they aren't and you have to start treatment, keep your positive attitude going and you'll get through it easier than you might think 🙂
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- February 20, 2016 at 6:12 pm
Hi Jenni! Yes according to my oncologist it was recently approved for Stage 3. Doesn't dound like its a trial. Not really sure how the DecisionDX affects insurance but I do know that whatever my insurance doesn't pay for Castle (who the test is through) covers the rest so it is free to me. I'm assuming because it's new and they want people to try it?
Ugh to be honest I haven't even thought about insurance coverage for any drug treatments. I just know I do not want to do them!! They all sound pretty horrible to me. I swear I get side effects from everything I take so I'm sure I would be one of the unlucky ones to have horrific side effects from any adjuvant treatment. That's why I've been avoiding it like the plague! 🙂 my mom keeps saying "if it ain't broke don't fix it" and like I said right now I'm perfectly healthy so I'm trying to determine if I should continue on the watch and wait and then move on to treatment if I progress. All my docs keep telling me I have such a good prognosis. That's why I'm terrified of the results of this DecisionDX test. Maybe I just would be better off not knowing. :/
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- February 20, 2016 at 6:12 pm
Hi Jenni! Yes according to my oncologist it was recently approved for Stage 3. Doesn't dound like its a trial. Not really sure how the DecisionDX affects insurance but I do know that whatever my insurance doesn't pay for Castle (who the test is through) covers the rest so it is free to me. I'm assuming because it's new and they want people to try it?
Ugh to be honest I haven't even thought about insurance coverage for any drug treatments. I just know I do not want to do them!! They all sound pretty horrible to me. I swear I get side effects from everything I take so I'm sure I would be one of the unlucky ones to have horrific side effects from any adjuvant treatment. That's why I've been avoiding it like the plague! 🙂 my mom keeps saying "if it ain't broke don't fix it" and like I said right now I'm perfectly healthy so I'm trying to determine if I should continue on the watch and wait and then move on to treatment if I progress. All my docs keep telling me I have such a good prognosis. That's why I'm terrified of the results of this DecisionDX test. Maybe I just would be better off not knowing. :/
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- February 21, 2016 at 1:37 am
I just got the results from the DecisionDX test and it came back class 1. I plan to call them next week to ask some questions. I am 3A and had Metastasis melanoma removed so am a confused as to what this really means.
Hope this helps, Ken
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- February 21, 2016 at 4:06 am
THANK YOU SO MUCH KEN!! You have given me new found hope!! So it is possible to be a stage 3 and a Class 1! If this testing is accurate (and I hope and pray with all of my being it is for you!) than you are very unlikely to ever have to face melanoma again (around 3% chance).
Unfortunately, there isn't much info out there on this testing and its accuracy (except what Castle, the creators of the test, have put out there). Have you spoke to your doctors about your results? What is their opinion?
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- February 21, 2016 at 4:06 am
THANK YOU SO MUCH KEN!! You have given me new found hope!! So it is possible to be a stage 3 and a Class 1! If this testing is accurate (and I hope and pray with all of my being it is for you!) than you are very unlikely to ever have to face melanoma again (around 3% chance).
Unfortunately, there isn't much info out there on this testing and its accuracy (except what Castle, the creators of the test, have put out there). Have you spoke to your doctors about your results? What is their opinion?
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- February 21, 2016 at 4:06 am
THANK YOU SO MUCH KEN!! You have given me new found hope!! So it is possible to be a stage 3 and a Class 1! If this testing is accurate (and I hope and pray with all of my being it is for you!) than you are very unlikely to ever have to face melanoma again (around 3% chance).
Unfortunately, there isn't much info out there on this testing and its accuracy (except what Castle, the creators of the test, have put out there). Have you spoke to your doctors about your results? What is their opinion?
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