› Forums › General Melanoma Community › What are they NOT telling us??
- This topic has 12 replies, 4 voices, and was last updated 8 years, 5 months ago by
Jubes.
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- October 29, 2015 at 12:23 pm
I stated before in a past blog that my husband had a very bad mass (not primary location Im told) removed from his arm in August. So bad, in fact, they had to classify as a stage IV. It didnt, however, spread to his lymph nodes or show in any scans anywhere else. It does not follow the standard definition of a IV, but Im also told this happens in about 3% of cases like his.
They did a brain scan MRI last week, not sure the results until next week. He's had a cough for over a month. He doesnt smoke. He's very weak, tired and sick. In the 10 years Ive known him Ive only seen him sick one time years ago. Now hes been sick with fevers, chills, lethargic and this cough. Says he feels like something is in his lungs.
Now they want him to start immunotherapy with Opdivo. Why? Why are they telling us they got this huge nasty mass, margins clear, calling him a Stage IV, saying things look good, but ramping up treatments, additional MRI's? When I read on this Opdivo, it seems for late stage, nothing else will work treatment.
I assume they thing he has cells floating around and they want to be proactive and kill it before it lands anywhere? Im so confused. Everyday he's weaker. God, whats happening and Im feeling like we are not getting the whole truth on this.
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- October 29, 2015 at 2:06 pm
I am sorry for all that you and your husband are going through. I cannot tell you what is going on with your husband. However, I am glad they have done an MRI of his brain. I would ask that they do a CT scan of his lungs if they have not. Hopefully all those things will come back negative….. Yet, I am very happy that they are recommending that he start of Opdivo (formerly Nivolumab), an anti-PD1 treatment. I have had brain and lung mets….that were completely gone surgery and SRS, rendering me NED (No Evidence of Disease) by the time I started Opdivo/Nivo in December of 2010 in an NED arm of a trial that also included an arm of patients with disease. Those of us in my arm are doing very well….better than any stats for recurrence and death in patients with no treatment after being NED and those who have managed to wrangle other treatments when NED. Though some of my dear ones have passed, currently, I and others in my cohort are 5 years out and remain NED. Others, who enrolled later in the trial are coming along. Additionally, trials with a combination of Ipi (Yervoy)/Nivo (Opdivo) are ongoing for NED folks. These are good things!!! We have learned that immunotherapy (that's what anti-PD1 is) works much better with the lowest tumor burden possible. Now that Opdivo is FDA approved (Neither of the anti-PD1 products – Nivo/Opdivo or Pembro/Ketruda, nor ipi/Yervoy were so when I started this process!) some folks are getting it sooner rather than later. That is really, really good!!! There is a great deal of info about melanoma, its treatments and anti-PD1 specifically on my blog. You can use the search bubble to the top left to find what you need if you are interested. I wish you and your husband well. Celeste
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- October 29, 2015 at 2:31 pm
Thank you Celeste! Your positivity is so needed. Thank you! I will check on your blog! There is a lot of information out there on melanoma. Too much and so much is not good. Ill update on the Brain MRI. I asked him to ask his dr for CT of his lungs but that hasnt happened yet. I see him fading. Im not imagining it. He said he feels it too. This is so heavy on us.
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- October 29, 2015 at 2:31 pm
Thank you Celeste! Your positivity is so needed. Thank you! I will check on your blog! There is a lot of information out there on melanoma. Too much and so much is not good. Ill update on the Brain MRI. I asked him to ask his dr for CT of his lungs but that hasnt happened yet. I see him fading. Im not imagining it. He said he feels it too. This is so heavy on us.
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- October 29, 2015 at 2:31 pm
Thank you Celeste! Your positivity is so needed. Thank you! I will check on your blog! There is a lot of information out there on melanoma. Too much and so much is not good. Ill update on the Brain MRI. I asked him to ask his dr for CT of his lungs but that hasnt happened yet. I see him fading. Im not imagining it. He said he feels it too. This is so heavy on us.
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- October 29, 2015 at 2:06 pm
I am sorry for all that you and your husband are going through. I cannot tell you what is going on with your husband. However, I am glad they have done an MRI of his brain. I would ask that they do a CT scan of his lungs if they have not. Hopefully all those things will come back negative….. Yet, I am very happy that they are recommending that he start of Opdivo (formerly Nivolumab), an anti-PD1 treatment. I have had brain and lung mets….that were completely gone surgery and SRS, rendering me NED (No Evidence of Disease) by the time I started Opdivo/Nivo in December of 2010 in an NED arm of a trial that also included an arm of patients with disease. Those of us in my arm are doing very well….better than any stats for recurrence and death in patients with no treatment after being NED and those who have managed to wrangle other treatments when NED. Though some of my dear ones have passed, currently, I and others in my cohort are 5 years out and remain NED. Others, who enrolled later in the trial are coming along. Additionally, trials with a combination of Ipi (Yervoy)/Nivo (Opdivo) are ongoing for NED folks. These are good things!!! We have learned that immunotherapy (that's what anti-PD1 is) works much better with the lowest tumor burden possible. Now that Opdivo is FDA approved (Neither of the anti-PD1 products – Nivo/Opdivo or Pembro/Ketruda, nor ipi/Yervoy were so when I started this process!) some folks are getting it sooner rather than later. That is really, really good!!! There is a great deal of info about melanoma, its treatments and anti-PD1 specifically on my blog. You can use the search bubble to the top left to find what you need if you are interested. I wish you and your husband well. Celeste
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- October 29, 2015 at 2:06 pm
I am sorry for all that you and your husband are going through. I cannot tell you what is going on with your husband. However, I am glad they have done an MRI of his brain. I would ask that they do a CT scan of his lungs if they have not. Hopefully all those things will come back negative….. Yet, I am very happy that they are recommending that he start of Opdivo (formerly Nivolumab), an anti-PD1 treatment. I have had brain and lung mets….that were completely gone surgery and SRS, rendering me NED (No Evidence of Disease) by the time I started Opdivo/Nivo in December of 2010 in an NED arm of a trial that also included an arm of patients with disease. Those of us in my arm are doing very well….better than any stats for recurrence and death in patients with no treatment after being NED and those who have managed to wrangle other treatments when NED. Though some of my dear ones have passed, currently, I and others in my cohort are 5 years out and remain NED. Others, who enrolled later in the trial are coming along. Additionally, trials with a combination of Ipi (Yervoy)/Nivo (Opdivo) are ongoing for NED folks. These are good things!!! We have learned that immunotherapy (that's what anti-PD1 is) works much better with the lowest tumor burden possible. Now that Opdivo is FDA approved (Neither of the anti-PD1 products – Nivo/Opdivo or Pembro/Ketruda, nor ipi/Yervoy were so when I started this process!) some folks are getting it sooner rather than later. That is really, really good!!! There is a great deal of info about melanoma, its treatments and anti-PD1 specifically on my blog. You can use the search bubble to the top left to find what you need if you are interested. I wish you and your husband well. Celeste
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- October 29, 2015 at 3:56 pm
I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know – if you and your husband want that information.
Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.
I wish you all the best!
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- October 29, 2015 at 3:56 pm
I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know – if you and your husband want that information.
Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.
I wish you all the best!
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- October 29, 2015 at 3:56 pm
I'm also very sorry about what you and your husband are going through. I strongly think that the doctors should answer all your questions and tell you what you want to know – if you and your husband want that information.
Opdivo is good and has helped many other people. However, the combination Opdivo+Yervoy has higher response rate but also higher toxicity. It has just been approved in the US and it seems that many patients start with that. You need to consider this since the combination is approved for first line and it might be more complicated to get it in case Opdivo does not result in a response.
I wish you all the best!
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- October 29, 2015 at 7:55 pm
Hi
so sorry that you are going through this. if I have any questions for my doctors they encourage me to call them. I usually text them and they call right back. Please get in touch with them and get the information you need. Before I started keytruda I could feel myself going downhill very fast. For the first time I thought, so this is what the beginning of the end feels like. Within a week I was feeling considerably worse. On the other hand when I started keytruda (same as your husbands recommended treatment) it turned around just as quickly, so I really hope for you and your family that you get the same result.
Anne-Louise
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- October 29, 2015 at 7:55 pm
Hi
so sorry that you are going through this. if I have any questions for my doctors they encourage me to call them. I usually text them and they call right back. Please get in touch with them and get the information you need. Before I started keytruda I could feel myself going downhill very fast. For the first time I thought, so this is what the beginning of the end feels like. Within a week I was feeling considerably worse. On the other hand when I started keytruda (same as your husbands recommended treatment) it turned around just as quickly, so I really hope for you and your family that you get the same result.
Anne-Louise
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- October 29, 2015 at 7:55 pm
Hi
so sorry that you are going through this. if I have any questions for my doctors they encourage me to call them. I usually text them and they call right back. Please get in touch with them and get the information you need. Before I started keytruda I could feel myself going downhill very fast. For the first time I thought, so this is what the beginning of the end feels like. Within a week I was feeling considerably worse. On the other hand when I started keytruda (same as your husbands recommended treatment) it turned around just as quickly, so I really hope for you and your family that you get the same result.
Anne-Louise
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