› Forums › General Melanoma Community › Braf combo working so far
- This topic has 24 replies, 5 voices, and was last updated 8 years, 8 months ago by
Kim K.
- Post
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- September 1, 2015 at 6:51 pm
My husband has Braf stage IV metastatic melanoma. It is in his duodenum, and spots along his small intestine and pelvic area. He has been on the Tafinlar/Mekinist Combo for three months now. After a CT scan yesterday he has some spots that are not there and others shrinking. The wonderful insurance company wont let us have another PET scan yet and I know they are more accurate and show more. Very frustrating. I know this is not a fix but a way to stave off growing and spreading. I have to say I am optimistic. He is feeling wonderful overall with a side of fatigue. We have had a couple of set backs. A couple of weeks ago he had pneumonia in both lungs. Yesterday we found out he has small blood clots in both lungs. Anyone else have any experiences to share? I am wondering what our next steps are. His Dr. said this treatment is working, but for how long we don't know.
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- September 1, 2015 at 10:16 pm
So pleased it is working for you. It is annoying with scans , I personally feel it is so important for progress and should never be an issue in getting scans. I get so angry when you are dealing with any cancer and everything always comes down to money it's our lives.
scooby
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- September 1, 2015 at 10:16 pm
So pleased it is working for you. It is annoying with scans , I personally feel it is so important for progress and should never be an issue in getting scans. I get so angry when you are dealing with any cancer and everything always comes down to money it's our lives.
scooby
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- September 2, 2015 at 3:37 pm
Insurance companies can be so infuriating! He will have another PET scan anyway, so glad they are willing to pay for both instead of just doing the PET scan. Makes no sense. As a patient and family, we want to know if we are on the right track, time is surely of the essence.
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- September 2, 2015 at 3:37 pm
Insurance companies can be so infuriating! He will have another PET scan anyway, so glad they are willing to pay for both instead of just doing the PET scan. Makes no sense. As a patient and family, we want to know if we are on the right track, time is surely of the essence.
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- September 2, 2015 at 3:37 pm
Insurance companies can be so infuriating! He will have another PET scan anyway, so glad they are willing to pay for both instead of just doing the PET scan. Makes no sense. As a patient and family, we want to know if we are on the right track, time is surely of the essence.
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- September 1, 2015 at 10:16 pm
So pleased it is working for you. It is annoying with scans , I personally feel it is so important for progress and should never be an issue in getting scans. I get so angry when you are dealing with any cancer and everything always comes down to money it's our lives.
scooby
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- September 2, 2015 at 3:54 am
How long has he been on the Combo?? My husband is nearly 2 months on it and we get the results from his first scan on Thursday……..after listening to everyone's success on the BRAF I have my hopes up really high…..but am anxious of course, what if he isn't a responder/ We'll see. He has been really fatiqued, and has a previous broken back, wrist and joint problems and the medicine seems to have excalated the pain levels. He has had a few skin cancers frozen off his skin, and headaches.
I was wondering about the PET scan schedule too…..his last one showed subcarinal lymph nodes affected…..his tumor is in his right mid lobe lung…….how do we know it hasn't spread some other evil place? That is one of my questions on Thursday, what is the schedule? Anxiety becomes a new way of life.
Sorry, I see I have offered you no help and vented on top of it! I hope that your husband feels better – take care.
We are really hoping for good news…..wish us luck!
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- September 2, 2015 at 2:50 pm
Well it is good to know all these things. I am just waiting for the results of my biopsy and feel almost certain that it will be positive for melanoma and am scared still so am wondering what the alternatives are so it is good to read your posts. I had a pet scan a year ago for another cancer and am having a scan next Tuesday for my upper part area to include my lungs, just wonder if it will show up my lymph glands because I wonder if they are infected by now. All terrible waiting.
I wish you both good luck and fingers crossed,
Patricia xxx
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- September 2, 2015 at 2:50 pm
Well it is good to know all these things. I am just waiting for the results of my biopsy and feel almost certain that it will be positive for melanoma and am scared still so am wondering what the alternatives are so it is good to read your posts. I had a pet scan a year ago for another cancer and am having a scan next Tuesday for my upper part area to include my lungs, just wonder if it will show up my lymph glands because I wonder if they are infected by now. All terrible waiting.
I wish you both good luck and fingers crossed,
Patricia xxx
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- September 2, 2015 at 2:50 pm
Well it is good to know all these things. I am just waiting for the results of my biopsy and feel almost certain that it will be positive for melanoma and am scared still so am wondering what the alternatives are so it is good to read your posts. I had a pet scan a year ago for another cancer and am having a scan next Tuesday for my upper part area to include my lungs, just wonder if it will show up my lymph glands because I wonder if they are infected by now. All terrible waiting.
I wish you both good luck and fingers crossed,
Patricia xxx
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- September 2, 2015 at 3:35 pm
He has been on the combo for three months. We just had a CT scan (which won't show as good at the PET), because the evil insurance companies won't pay for the PET again yet. Not sure on a schedule, but our Dr. said he is making progress and some spots have decreased in size while others aren't showing up.No new areas found right now! My husband hasn't really had any side effects except for fatigue. We know his immune system is not up to par because a few weeks back he had pneumonia in both lungs. Now he has scattered blood clots in both lungs and is being treated for that. The Dr. said he is responding well to the combo. Luck and prayers to you and keep me posted!
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- September 2, 2015 at 3:35 pm
He has been on the combo for three months. We just had a CT scan (which won't show as good at the PET), because the evil insurance companies won't pay for the PET again yet. Not sure on a schedule, but our Dr. said he is making progress and some spots have decreased in size while others aren't showing up.No new areas found right now! My husband hasn't really had any side effects except for fatigue. We know his immune system is not up to par because a few weeks back he had pneumonia in both lungs. Now he has scattered blood clots in both lungs and is being treated for that. The Dr. said he is responding well to the combo. Luck and prayers to you and keep me posted!
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- September 2, 2015 at 3:35 pm
He has been on the combo for three months. We just had a CT scan (which won't show as good at the PET), because the evil insurance companies won't pay for the PET again yet. Not sure on a schedule, but our Dr. said he is making progress and some spots have decreased in size while others aren't showing up.No new areas found right now! My husband hasn't really had any side effects except for fatigue. We know his immune system is not up to par because a few weeks back he had pneumonia in both lungs. Now he has scattered blood clots in both lungs and is being treated for that. The Dr. said he is responding well to the combo. Luck and prayers to you and keep me posted!
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- September 2, 2015 at 3:42 pm
He as been on the combo for 3 months now with no side effects other than fatigue. We had a set back with double pneumonia a few weeks ago and now has blood clots in both lungs that we are currently being treated for. Not sure on the scan schedule. We only received the CT this time because the insurance company would not pay for another PET at this time. Stupid really, they will be paying for both anyway. The Dr. said he is responding well to the combo and that some spots have decreased in size and others do not appear. However, being a CT we cannot see the main tumors in the duodenum :/ This waiting game is tough but I know we are on the right track. Luck and prayers headed your way! Keep me posted!
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- September 2, 2015 at 3:42 pm
He as been on the combo for 3 months now with no side effects other than fatigue. We had a set back with double pneumonia a few weeks ago and now has blood clots in both lungs that we are currently being treated for. Not sure on the scan schedule. We only received the CT this time because the insurance company would not pay for another PET at this time. Stupid really, they will be paying for both anyway. The Dr. said he is responding well to the combo and that some spots have decreased in size and others do not appear. However, being a CT we cannot see the main tumors in the duodenum :/ This waiting game is tough but I know we are on the right track. Luck and prayers headed your way! Keep me posted!
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- September 2, 2015 at 3:42 pm
He as been on the combo for 3 months now with no side effects other than fatigue. We had a set back with double pneumonia a few weeks ago and now has blood clots in both lungs that we are currently being treated for. Not sure on the scan schedule. We only received the CT this time because the insurance company would not pay for another PET at this time. Stupid really, they will be paying for both anyway. The Dr. said he is responding well to the combo and that some spots have decreased in size and others do not appear. However, being a CT we cannot see the main tumors in the duodenum :/ This waiting game is tough but I know we are on the right track. Luck and prayers headed your way! Keep me posted!
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- September 2, 2015 at 3:54 am
How long has he been on the Combo?? My husband is nearly 2 months on it and we get the results from his first scan on Thursday……..after listening to everyone's success on the BRAF I have my hopes up really high…..but am anxious of course, what if he isn't a responder/ We'll see. He has been really fatiqued, and has a previous broken back, wrist and joint problems and the medicine seems to have excalated the pain levels. He has had a few skin cancers frozen off his skin, and headaches.
I was wondering about the PET scan schedule too…..his last one showed subcarinal lymph nodes affected…..his tumor is in his right mid lobe lung…….how do we know it hasn't spread some other evil place? That is one of my questions on Thursday, what is the schedule? Anxiety becomes a new way of life.
Sorry, I see I have offered you no help and vented on top of it! I hope that your husband feels better – take care.
We are really hoping for good news…..wish us luck!
-
- September 2, 2015 at 3:54 am
How long has he been on the Combo?? My husband is nearly 2 months on it and we get the results from his first scan on Thursday……..after listening to everyone's success on the BRAF I have my hopes up really high…..but am anxious of course, what if he isn't a responder/ We'll see. He has been really fatiqued, and has a previous broken back, wrist and joint problems and the medicine seems to have excalated the pain levels. He has had a few skin cancers frozen off his skin, and headaches.
I was wondering about the PET scan schedule too…..his last one showed subcarinal lymph nodes affected…..his tumor is in his right mid lobe lung…….how do we know it hasn't spread some other evil place? That is one of my questions on Thursday, what is the schedule? Anxiety becomes a new way of life.
Sorry, I see I have offered you no help and vented on top of it! I hope that your husband feels better – take care.
We are really hoping for good news…..wish us luck!
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- September 2, 2015 at 6:51 pm
Just a comment on the blood clots…
Cancer patients are at higher risk for them regardless of tumor load. I hope your husband is on a blood thinner.
I only had a BB sized met in my chest muscle and a 1cm lung nodule that was removed with VATS. The night after surgery I had a pulmonary embolus that could have killed me. I was already up and walking around, had the stockings with pumps, and a very low tumor burden. It felt like I was shot in the back with a molten rod.
Fortunately it resolved on its own and I was put on blood thinners for 5 days. 5 years later when I had ACL reconstruction on my knee, my surgeon was concerned enough he put me on blood thinners after surgery for 3 weeks.
Don't let the clots get him first.
Take care,
KK
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- September 2, 2015 at 6:51 pm
Just a comment on the blood clots…
Cancer patients are at higher risk for them regardless of tumor load. I hope your husband is on a blood thinner.
I only had a BB sized met in my chest muscle and a 1cm lung nodule that was removed with VATS. The night after surgery I had a pulmonary embolus that could have killed me. I was already up and walking around, had the stockings with pumps, and a very low tumor burden. It felt like I was shot in the back with a molten rod.
Fortunately it resolved on its own and I was put on blood thinners for 5 days. 5 years later when I had ACL reconstruction on my knee, my surgeon was concerned enough he put me on blood thinners after surgery for 3 weeks.
Don't let the clots get him first.
Take care,
KK
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- September 2, 2015 at 6:51 pm
Just a comment on the blood clots…
Cancer patients are at higher risk for them regardless of tumor load. I hope your husband is on a blood thinner.
I only had a BB sized met in my chest muscle and a 1cm lung nodule that was removed with VATS. The night after surgery I had a pulmonary embolus that could have killed me. I was already up and walking around, had the stockings with pumps, and a very low tumor burden. It felt like I was shot in the back with a molten rod.
Fortunately it resolved on its own and I was put on blood thinners for 5 days. 5 years later when I had ACL reconstruction on my knee, my surgeon was concerned enough he put me on blood thinners after surgery for 3 weeks.
Don't let the clots get him first.
Take care,
KK
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