› Forums › General Melanoma Community › UPDATE on Dad
- This topic has 48 replies, 8 voices, and was last updated 9 years, 3 months ago by
snow white.
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- December 15, 2016 at 5:25 am
Hi everyone,
I had to step away for a few weeks as my depression/anxiety has been bad and on top of that I had to go on a business trip.
I do have a positive update on my Dad. He had is 4th infusion of Opdivo yesterday. He is tolerating it really well, no nausea at all, he says he feels a little yucky for a few hours, but it goes away by the time they drive home. He has gained back all of the weight that he lost, which is a good thing. He is now walking a few blocks by himself everyday. He says he still feels "fuzzy", but we feel that is to be expected so soon after brain surgery. He had a Brain MRI about 10 days ago and got the final results yesterday. This was the first one since he left the hospital. His oncologist said that it looked really great, the only thing she saw was 2 very very small spots that have not grown and she feels are inconsequential at this point. We are definitely feeling some relief now. He will be having a PET scan next month to see whats happening in the rest of the body. He still remains asymptomatic, with absolutely no pain, seizures, etc. We are amazed at his recovery. I just told my mom yesterday that he is more "himself" every day. He still looks a bit "frail", but thats ok. His doctor has encouraged him to start going to the gym so that he can start building his muscle back that he has lost over these few months.
Overall, we are pleased with what we hear, but still a bit reluctant to get to excited. I fear the unknown, is this really the good news we think it is? Is this just temporary? Will the tumors in his brain come back? I guess time will tell. I am trying just to be happy with the postive news that we have gotten and pray that we continue on the road to a possible remission.
I think about everyone on here all of the time, especially Josh, Deb, Gary, Celeste, Niki, Jenn and a few others that I can't remember there names. I hope you are all doing well.
xo Jen
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- December 15, 2016 at 2:03 pm
Hey Jen! That is wonderful news!!. I know well the feeling of "waiting for the other shoe to drop'! But…I have also learned…that even when we don't think it's possible….we can find a way to enjoy each day….one. day. at. a. time! Not easy, I realize.
Wishing you and yours a beautiful Christmas and holiday season! love, celeste
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- December 15, 2016 at 2:03 pm
Hey Jen! That is wonderful news!!. I know well the feeling of "waiting for the other shoe to drop'! But…I have also learned…that even when we don't think it's possible….we can find a way to enjoy each day….one. day. at. a. time! Not easy, I realize.
Wishing you and yours a beautiful Christmas and holiday season! love, celeste
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- December 15, 2016 at 4:42 pm
Thank you Celeste! Great advise, i am working on enjoying each day as it comes, its always been a struggle for me not to look and worry about the days ahead, but I work on it daily.
Take care!
xo Jen
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- December 15, 2016 at 4:42 pm
Thank you Celeste! Great advise, i am working on enjoying each day as it comes, its always been a struggle for me not to look and worry about the days ahead, but I work on it daily.
Take care!
xo Jen
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- December 15, 2016 at 4:42 pm
Thank you Celeste! Great advise, i am working on enjoying each day as it comes, its always been a struggle for me not to look and worry about the days ahead, but I work on it daily.
Take care!
xo Jen
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- December 15, 2016 at 2:03 pm
Hey Jen! That is wonderful news!!. I know well the feeling of "waiting for the other shoe to drop'! But…I have also learned…that even when we don't think it's possible….we can find a way to enjoy each day….one. day. at. a. time! Not easy, I realize.
Wishing you and yours a beautiful Christmas and holiday season! love, celeste
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- December 15, 2016 at 3:18 pm
Jen, I am so happy to hear your dad is doing well on Opdivo and things are looking positive! Hold on to that positive news for this holiday season and worry about what the future may or may not hold next year!
Happy Holidays!
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- December 15, 2016 at 3:18 pm
Jen, I am so happy to hear your dad is doing well on Opdivo and things are looking positive! Hold on to that positive news for this holiday season and worry about what the future may or may not hold next year!
Happy Holidays!
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- December 15, 2016 at 3:18 pm
Jen, I am so happy to hear your dad is doing well on Opdivo and things are looking positive! Hold on to that positive news for this holiday season and worry about what the future may or may not hold next year!
Happy Holidays!
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- December 15, 2016 at 5:26 pm
Ahhhhh! I'm so happy to hear that he is doing well! : ) Going for walks… thinking about hitting the gym… putting on weight again. This is all good news! Hugs to you. Anxiety is a rough ride. Thanks for the update!
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- December 15, 2016 at 5:26 pm
Ahhhhh! I'm so happy to hear that he is doing well! : ) Going for walks… thinking about hitting the gym… putting on weight again. This is all good news! Hugs to you. Anxiety is a rough ride. Thanks for the update!
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- December 15, 2016 at 8:32 pm
Thank you Niki! I hope you are dong well.
xo Jen
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- December 15, 2016 at 8:32 pm
Thank you Niki! I hope you are dong well.
xo Jen
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- December 15, 2016 at 8:32 pm
Thank you Niki! I hope you are dong well.
xo Jen
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- December 16, 2016 at 3:03 pm
Body and brain scans were 5 weeks ago… and are still clear! With the exception of that tiny tid bit, already gamma zapped last Feb, which is still hanging out in my head….. probably just scar tissue at this point. It's not growing, but it's not melting away either. Sooooo… I figure if it's going to hang out, I'm going to name it. I've started referring to it as "Mike". Affectionately named after my initial medical oncologist, who moved upward and onward to MD Anderson in Texas. : ) HA!
It's nice to enjoy the holiday season without any added melanoma stress. Sooooo thankful each year for research and doctors who actually CARE. : )
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- December 16, 2016 at 5:09 pm
That is so awesome Niki!!!! So glad Mike is not growing! I always appreciate your replies and positivity.
Wishing you the best for the upcoming new year 🙂
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- December 16, 2016 at 5:09 pm
That is so awesome Niki!!!! So glad Mike is not growing! I always appreciate your replies and positivity.
Wishing you the best for the upcoming new year 🙂
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- December 16, 2016 at 5:09 pm
That is so awesome Niki!!!! So glad Mike is not growing! I always appreciate your replies and positivity.
Wishing you the best for the upcoming new year 🙂
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- December 16, 2016 at 3:03 pm
Body and brain scans were 5 weeks ago… and are still clear! With the exception of that tiny tid bit, already gamma zapped last Feb, which is still hanging out in my head….. probably just scar tissue at this point. It's not growing, but it's not melting away either. Sooooo… I figure if it's going to hang out, I'm going to name it. I've started referring to it as "Mike". Affectionately named after my initial medical oncologist, who moved upward and onward to MD Anderson in Texas. : ) HA!
It's nice to enjoy the holiday season without any added melanoma stress. Sooooo thankful each year for research and doctors who actually CARE. : )
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- December 16, 2016 at 3:03 pm
Body and brain scans were 5 weeks ago… and are still clear! With the exception of that tiny tid bit, already gamma zapped last Feb, which is still hanging out in my head….. probably just scar tissue at this point. It's not growing, but it's not melting away either. Sooooo… I figure if it's going to hang out, I'm going to name it. I've started referring to it as "Mike". Affectionately named after my initial medical oncologist, who moved upward and onward to MD Anderson in Texas. : ) HA!
It's nice to enjoy the holiday season without any added melanoma stress. Sooooo thankful each year for research and doctors who actually CARE. : )
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- December 15, 2016 at 5:26 pm
Ahhhhh! I'm so happy to hear that he is doing well! : ) Going for walks… thinking about hitting the gym… putting on weight again. This is all good news! Hugs to you. Anxiety is a rough ride. Thanks for the update!
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- December 15, 2016 at 5:51 pm
Dear snow white,
great to hear you dad is doing better, i'm sure he will be feeling better and better every day…
Hugs!
Patrisa
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- December 15, 2016 at 8:33 pm
Thank you Patrisa. We are enjoying every minute of good news. I hope your mom is doing well.
xo Jen
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- December 15, 2016 at 8:33 pm
Thank you Patrisa. We are enjoying every minute of good news. I hope your mom is doing well.
xo Jen
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- December 15, 2016 at 8:33 pm
Thank you Patrisa. We are enjoying every minute of good news. I hope your mom is doing well.
xo Jen
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- December 15, 2016 at 8:37 pm
ooops… I meant DAD.
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- December 15, 2016 at 8:37 pm
ooops… I meant DAD.
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- December 15, 2016 at 8:37 pm
ooops… I meant DAD.
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- December 15, 2016 at 7:41 pm
Hi Jen,
So pleased to hear that your news is so upbeat. Hope you andyour Mum are coping with the stress of dealing with all of this. Direction of travel sounds good … am really pleased for you and your family. will post my latest news in a tick..
Enjoy the holidays,
Deb
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- December 15, 2016 at 7:41 pm
Hi Jen,
So pleased to hear that your news is so upbeat. Hope you andyour Mum are coping with the stress of dealing with all of this. Direction of travel sounds good … am really pleased for you and your family. will post my latest news in a tick..
Enjoy the holidays,
Deb
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- December 15, 2016 at 7:41 pm
Hi Jen,
So pleased to hear that your news is so upbeat. Hope you andyour Mum are coping with the stress of dealing with all of this. Direction of travel sounds good … am really pleased for you and your family. will post my latest news in a tick..
Enjoy the holidays,
Deb
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- December 16, 2016 at 12:34 am
Hi Jen,
Such fantastic news! Time to relax and enjoy the holidays with the family you so love. Go Dad go!
Gary
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- December 16, 2016 at 5:11 pm
Thank you Gary. I love to hear from you, your such a great cheerleader and have brought me great comfort with your replies to my posts.j
Wishing you the very best in the coming New Year!
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- December 16, 2016 at 5:11 pm
Thank you Gary. I love to hear from you, your such a great cheerleader and have brought me great comfort with your replies to my posts.j
Wishing you the very best in the coming New Year!
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- December 16, 2016 at 5:11 pm
Thank you Gary. I love to hear from you, your such a great cheerleader and have brought me great comfort with your replies to my posts.j
Wishing you the very best in the coming New Year!
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- December 16, 2016 at 1:04 pm
Jen, I have been wondering about your dad. So glad to hear the latest MRI was good news! Didn’t he have multiple lesions? And there are only two small ones left? That is fantastic! Keeping fingers crossed for a good pet scan as well.Sounds like he is recovering really well and getting stronger every day. It is scary when you see your parents so weak and frail, but it’s amazing also what the body can do! It also depends on the person’s will to get better. My dad bounced back from his first two seizures. Even the doctors were amazed! This third one kind of knocked him down though. He is now in the hospital with side effects from his 5th immunotherapy infusion. Started having some diarrhea and then heart fibrillations. He is very weak and can only walk a few steps by himself. I’m not sure why this is happening. But it could be from the immunotherapy. A couple of his tumours had actually grown on the latest scan, with some of them unchanged and some had shrunk. They think the one that grew the most could have had some bleeding though so they are not sure. Nevertheless they are taking him off of immunotherapy and switching to the BRAF Inhibitors. He started that last night. I am getting really scared. Since his overall well-being is not well, he has a hard time taking care of himself. This is not good. They think it is ramifications from the last seizure and not the brain tumours since the tumours are still very small.
Anyway, I am so glad your dad is not experiencing seizures. That has been by far the worst part of this whole journey so far. How much prednisone is he on? With 2 small lesions the risk of a seizure is probably non-existent. I hope the immunotherapy kicks his cancer’s back end!! You should relax now and just enjoy the Christmas season. Best wishes to you!
Annie
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- December 16, 2016 at 5:25 pm
Thank you Annie! Yes, he ended up having 15 lesions total when they did the Gamma Knife. It has been remarkable to see his recovery since he had Gamma Knife and then a Craniotomy just 6 days later! He has been on Keppra since about 1 month before his Gamma procedure and never did have any seizures. He is not on ANY prednisone, just blood pressure meds, keppra and of course NIVO (and vitamins). His only real complaint is that he is dizzy, but he will see his Neuro the first of January.
I am so very sorry to hear that your Dad is not doing well. Its just aweful as a caregiver and daughter to see our Dad's sick. I am really hoping that your Dad will be feeling better now that he is off of the immunotherapy, fortuanately for him the BRAF inhibitors are any option. My Dad was BRAF negative. Have they considered a crainiotomy for him? I know for my Dad the swelling (bleeding of 3 larger tumors) is what caused all of his physical symptoms (steroids wasn't touching the swelling). It is a scary surgery, but in my opinion well worth it.
Hang in there, I know firsthand what you are feeling right now, actually just typing this I feel it in the pit of my stomach, im so sorry you are going through this 🙁 We are STRONG though and have to be for our WARRIORS that we are supporting.
xo Jen
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- December 16, 2016 at 5:25 pm
Thank you Annie! Yes, he ended up having 15 lesions total when they did the Gamma Knife. It has been remarkable to see his recovery since he had Gamma Knife and then a Craniotomy just 6 days later! He has been on Keppra since about 1 month before his Gamma procedure and never did have any seizures. He is not on ANY prednisone, just blood pressure meds, keppra and of course NIVO (and vitamins). His only real complaint is that he is dizzy, but he will see his Neuro the first of January.
I am so very sorry to hear that your Dad is not doing well. Its just aweful as a caregiver and daughter to see our Dad's sick. I am really hoping that your Dad will be feeling better now that he is off of the immunotherapy, fortuanately for him the BRAF inhibitors are any option. My Dad was BRAF negative. Have they considered a crainiotomy for him? I know for my Dad the swelling (bleeding of 3 larger tumors) is what caused all of his physical symptoms (steroids wasn't touching the swelling). It is a scary surgery, but in my opinion well worth it.
Hang in there, I know firsthand what you are feeling right now, actually just typing this I feel it in the pit of my stomach, im so sorry you are going through this 🙁 We are STRONG though and have to be for our WARRIORS that we are supporting.
xo Jen
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- December 16, 2016 at 5:25 pm
Thank you Annie! Yes, he ended up having 15 lesions total when they did the Gamma Knife. It has been remarkable to see his recovery since he had Gamma Knife and then a Craniotomy just 6 days later! He has been on Keppra since about 1 month before his Gamma procedure and never did have any seizures. He is not on ANY prednisone, just blood pressure meds, keppra and of course NIVO (and vitamins). His only real complaint is that he is dizzy, but he will see his Neuro the first of January.
I am so very sorry to hear that your Dad is not doing well. Its just aweful as a caregiver and daughter to see our Dad's sick. I am really hoping that your Dad will be feeling better now that he is off of the immunotherapy, fortuanately for him the BRAF inhibitors are any option. My Dad was BRAF negative. Have they considered a crainiotomy for him? I know for my Dad the swelling (bleeding of 3 larger tumors) is what caused all of his physical symptoms (steroids wasn't touching the swelling). It is a scary surgery, but in my opinion well worth it.
Hang in there, I know firsthand what you are feeling right now, actually just typing this I feel it in the pit of my stomach, im so sorry you are going through this 🙁 We are STRONG though and have to be for our WARRIORS that we are supporting.
xo Jen
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- December 16, 2016 at 1:04 pm
Jen, I have been wondering about your dad. So glad to hear the latest MRI was good news! Didn’t he have multiple lesions? And there are only two small ones left? That is fantastic! Keeping fingers crossed for a good pet scan as well.Sounds like he is recovering really well and getting stronger every day. It is scary when you see your parents so weak and frail, but it’s amazing also what the body can do! It also depends on the person’s will to get better. My dad bounced back from his first two seizures. Even the doctors were amazed! This third one kind of knocked him down though. He is now in the hospital with side effects from his 5th immunotherapy infusion. Started having some diarrhea and then heart fibrillations. He is very weak and can only walk a few steps by himself. I’m not sure why this is happening. But it could be from the immunotherapy. A couple of his tumours had actually grown on the latest scan, with some of them unchanged and some had shrunk. They think the one that grew the most could have had some bleeding though so they are not sure. Nevertheless they are taking him off of immunotherapy and switching to the BRAF Inhibitors. He started that last night. I am getting really scared. Since his overall well-being is not well, he has a hard time taking care of himself. This is not good. They think it is ramifications from the last seizure and not the brain tumours since the tumours are still very small.
Anyway, I am so glad your dad is not experiencing seizures. That has been by far the worst part of this whole journey so far. How much prednisone is he on? With 2 small lesions the risk of a seizure is probably non-existent. I hope the immunotherapy kicks his cancer’s back end!! You should relax now and just enjoy the Christmas season. Best wishes to you!
Annie
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- December 16, 2016 at 1:04 pm
Jen, I have been wondering about your dad. So glad to hear the latest MRI was good news! Didn’t he have multiple lesions? And there are only two small ones left? That is fantastic! Keeping fingers crossed for a good pet scan as well.Sounds like he is recovering really well and getting stronger every day. It is scary when you see your parents so weak and frail, but it’s amazing also what the body can do! It also depends on the person’s will to get better. My dad bounced back from his first two seizures. Even the doctors were amazed! This third one kind of knocked him down though. He is now in the hospital with side effects from his 5th immunotherapy infusion. Started having some diarrhea and then heart fibrillations. He is very weak and can only walk a few steps by himself. I’m not sure why this is happening. But it could be from the immunotherapy. A couple of his tumours had actually grown on the latest scan, with some of them unchanged and some had shrunk. They think the one that grew the most could have had some bleeding though so they are not sure. Nevertheless they are taking him off of immunotherapy and switching to the BRAF Inhibitors. He started that last night. I am getting really scared. Since his overall well-being is not well, he has a hard time taking care of himself. This is not good. They think it is ramifications from the last seizure and not the brain tumours since the tumours are still very small.
Anyway, I am so glad your dad is not experiencing seizures. That has been by far the worst part of this whole journey so far. How much prednisone is he on? With 2 small lesions the risk of a seizure is probably non-existent. I hope the immunotherapy kicks his cancer’s back end!! You should relax now and just enjoy the Christmas season. Best wishes to you!
Annie
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