› Forums › General Melanoma Community › 1st dose down……
- This topic has 18 replies, 3 voices, and was last updated 9 years, 4 months ago by
snow white.
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- November 8, 2016 at 2:31 pm
Well…my Dad is finally home. He had his 1st dose of NIVO exactly 1 week ago. He did fine, he said it took 1 hour. Not much in the way of side effects, he said he felt slight flu like symptoms but not bad at all. He will go 1 week from today for his 2nd infusion.
When I went up to see him yesterday, he was very weak and tired. He said he didn't sleep well. He seems very tired, his color is off, he is not himself, kind of hunched over etc. It scared me. I came back down to my house and just cried. I am trying so hard to be strong, but it just kills me to see him this way. So far, I have been able to be strong and positive in front of him. I want to push him a bit and get him up and walking around more, but I am not sure how hard I can push. What scares me the most is that I know we have a very long road ahead of us and I am having a hard time thinking about anything else but him. I know I have to be able to live my life with my family, but its so hard not to be focused all of the time on him. Funny thing is, he wants me to keep doing my "normal" rountine, but sometimes I fell like I am betraying him for laughing and having fun. Ugh!
Sorry for rambling so much, I guess I needed to get this off of my chest and talk to people that understand.
I hope you are all doing well not matter what stage of this battle you are in. HANG IN THERE!!!!!!
XO
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- November 8, 2016 at 9:15 pm
Hi Jenn,
Sorry to hear that things are still so very difficult for you all.
Your Dad will really mean it when he says he wants you to have laughs and take pleasure with your family when you get the chance. You have all had to face some really difficult situations and your Dad probably just needs a bit of time to heal after the brain surgery , adjust to being home and to being on Nivo. He sounds like a fighter and will move things up a gear when heis ready. You sometimes forget how much the set up in hospital helps when you are really ill and when you get home you tend to relax a bit more and the fatigue catches up with you.
If you need to cry with him- its OK. I have swapped in and out of tears with most of the family at some point since the last CT scan, then we pick ourselves up and carry on. I don't want my disease to make my grown up kids put their lives on hold. The uncertainty re the future is hard to carry- but no one knows for sure what is round the corner. You are not betraying your Dad- far from it- just trying to juggle things at an emotional and demanding time. Stop beating yourself up… we are allmuddling through to the best of our ability.
Like you say- this could be a long road- you have just had a very intense period with decisions galore- cut yourself some slack and stop beating yourself up. It would probably be a tonic for your Dad to hear that you and your family have had some fun…
Best wishes
Deb
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- November 8, 2016 at 9:15 pm
Hi Jenn,
Sorry to hear that things are still so very difficult for you all.
Your Dad will really mean it when he says he wants you to have laughs and take pleasure with your family when you get the chance. You have all had to face some really difficult situations and your Dad probably just needs a bit of time to heal after the brain surgery , adjust to being home and to being on Nivo. He sounds like a fighter and will move things up a gear when heis ready. You sometimes forget how much the set up in hospital helps when you are really ill and when you get home you tend to relax a bit more and the fatigue catches up with you.
If you need to cry with him- its OK. I have swapped in and out of tears with most of the family at some point since the last CT scan, then we pick ourselves up and carry on. I don't want my disease to make my grown up kids put their lives on hold. The uncertainty re the future is hard to carry- but no one knows for sure what is round the corner. You are not betraying your Dad- far from it- just trying to juggle things at an emotional and demanding time. Stop beating yourself up… we are allmuddling through to the best of our ability.
Like you say- this could be a long road- you have just had a very intense period with decisions galore- cut yourself some slack and stop beating yourself up. It would probably be a tonic for your Dad to hear that you and your family have had some fun…
Best wishes
Deb
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- November 9, 2016 at 3:55 am
Thank you Deb. You are always able to make me feel better! I appreciate your encouragemnt, and you are right, my Dad is happy when he knows that I am doing ok and he does want me to continue living my life. Sometimes I just feel so torn, but it is nice to be reminded, thank you!
I hope you are coping well with your latest discoveries, I wish you and your family nothing but positive thoughts and lots of virtual ((hugs)).
xo
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- November 9, 2016 at 3:55 am
Thank you Deb. You are always able to make me feel better! I appreciate your encouragemnt, and you are right, my Dad is happy when he knows that I am doing ok and he does want me to continue living my life. Sometimes I just feel so torn, but it is nice to be reminded, thank you!
I hope you are coping well with your latest discoveries, I wish you and your family nothing but positive thoughts and lots of virtual ((hugs)).
xo
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- November 9, 2016 at 3:55 am
Thank you Deb. You are always able to make me feel better! I appreciate your encouragemnt, and you are right, my Dad is happy when he knows that I am doing ok and he does want me to continue living my life. Sometimes I just feel so torn, but it is nice to be reminded, thank you!
I hope you are coping well with your latest discoveries, I wish you and your family nothing but positive thoughts and lots of virtual ((hugs)).
xo
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- November 8, 2016 at 9:15 pm
Hi Jenn,
Sorry to hear that things are still so very difficult for you all.
Your Dad will really mean it when he says he wants you to have laughs and take pleasure with your family when you get the chance. You have all had to face some really difficult situations and your Dad probably just needs a bit of time to heal after the brain surgery , adjust to being home and to being on Nivo. He sounds like a fighter and will move things up a gear when heis ready. You sometimes forget how much the set up in hospital helps when you are really ill and when you get home you tend to relax a bit more and the fatigue catches up with you.
If you need to cry with him- its OK. I have swapped in and out of tears with most of the family at some point since the last CT scan, then we pick ourselves up and carry on. I don't want my disease to make my grown up kids put their lives on hold. The uncertainty re the future is hard to carry- but no one knows for sure what is round the corner. You are not betraying your Dad- far from it- just trying to juggle things at an emotional and demanding time. Stop beating yourself up… we are allmuddling through to the best of our ability.
Like you say- this could be a long road- you have just had a very intense period with decisions galore- cut yourself some slack and stop beating yourself up. It would probably be a tonic for your Dad to hear that you and your family have had some fun…
Best wishes
Deb
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- November 9, 2016 at 4:02 pm
Jennifer, I could have written that post myself. I struggle with the same issues. I have a beautiful family and two young children. But I feel like my whole life is wrapped up in my dad’s disease. I can’t seem to shake it no matter how I try. I walk around with a constant sadness in my heart. Then I feel like I am wasting precious time with my kids worrying about things I have no control over. I don’t want to look back on these years of my children’s life and it all be a blur. I want to appreciate every minute with them while they are still little.I am not close to my father since they are in Europe and I am in America. It makes it extremely difficult. I want to be able to be there with him. Whether it is to deal with doctors or just hold him in my arms. But unfortunately I cannot go over there right now.
6 days ago my dad had his third seizure and is back in the hospital. He is able to walk and feed himself again but not really speaking much. I worry so much about his speech issues being permanent. He had come back from the previous seizures pretty well, and now this. These seizures have really been the breaking point for me. It is a constant worry and fear about the ramifications.
Just wanted to share so you know you’re not alone. What you are feeling is completely normal and understandable. We really do need to live in the moment and cherish our lives. I know that is what are fathers would want us to do as well.
Deb, your words helped me as well, so thank you for that.
Annie
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- November 9, 2016 at 4:02 pm
Jennifer, I could have written that post myself. I struggle with the same issues. I have a beautiful family and two young children. But I feel like my whole life is wrapped up in my dad’s disease. I can’t seem to shake it no matter how I try. I walk around with a constant sadness in my heart. Then I feel like I am wasting precious time with my kids worrying about things I have no control over. I don’t want to look back on these years of my children’s life and it all be a blur. I want to appreciate every minute with them while they are still little.I am not close to my father since they are in Europe and I am in America. It makes it extremely difficult. I want to be able to be there with him. Whether it is to deal with doctors or just hold him in my arms. But unfortunately I cannot go over there right now.
6 days ago my dad had his third seizure and is back in the hospital. He is able to walk and feed himself again but not really speaking much. I worry so much about his speech issues being permanent. He had come back from the previous seizures pretty well, and now this. These seizures have really been the breaking point for me. It is a constant worry and fear about the ramifications.
Just wanted to share so you know you’re not alone. What you are feeling is completely normal and understandable. We really do need to live in the moment and cherish our lives. I know that is what are fathers would want us to do as well.
Deb, your words helped me as well, so thank you for that.
Annie
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- November 9, 2016 at 4:55 pm
Annie- I am so very sorry to hear that your Dad is having such a hard time. I am guessing he is on anti-seizure meds? It has to be so difficult being so far away, I can't even imagine. I hope that you will be able to get over to see your Dad and give him lots and lots of hugs! I know exactly how you feel about the sadness in your heart. I can't describe the feeling to anyone who has not felt it. I will literally be fine going about my day and then, BAM! My heart starts racing and I feel sick in my stomach with fear and worry. I am fortunate enough to be able to see Dad every day, but it isn't easy to always put on a happy face so that he doesn't worry, but I do it for him.
Thank you so much for sharing your story with me, it helps so much!!!
🙂
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- November 9, 2016 at 4:55 pm
Annie- I am so very sorry to hear that your Dad is having such a hard time. I am guessing he is on anti-seizure meds? It has to be so difficult being so far away, I can't even imagine. I hope that you will be able to get over to see your Dad and give him lots and lots of hugs! I know exactly how you feel about the sadness in your heart. I can't describe the feeling to anyone who has not felt it. I will literally be fine going about my day and then, BAM! My heart starts racing and I feel sick in my stomach with fear and worry. I am fortunate enough to be able to see Dad every day, but it isn't easy to always put on a happy face so that he doesn't worry, but I do it for him.
Thank you so much for sharing your story with me, it helps so much!!!
🙂
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- November 9, 2016 at 4:55 pm
Annie- I am so very sorry to hear that your Dad is having such a hard time. I am guessing he is on anti-seizure meds? It has to be so difficult being so far away, I can't even imagine. I hope that you will be able to get over to see your Dad and give him lots and lots of hugs! I know exactly how you feel about the sadness in your heart. I can't describe the feeling to anyone who has not felt it. I will literally be fine going about my day and then, BAM! My heart starts racing and I feel sick in my stomach with fear and worry. I am fortunate enough to be able to see Dad every day, but it isn't easy to always put on a happy face so that he doesn't worry, but I do it for him.
Thank you so much for sharing your story with me, it helps so much!!!
🙂
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- November 9, 2016 at 4:02 pm
Jennifer, I could have written that post myself. I struggle with the same issues. I have a beautiful family and two young children. But I feel like my whole life is wrapped up in my dad’s disease. I can’t seem to shake it no matter how I try. I walk around with a constant sadness in my heart. Then I feel like I am wasting precious time with my kids worrying about things I have no control over. I don’t want to look back on these years of my children’s life and it all be a blur. I want to appreciate every minute with them while they are still little.I am not close to my father since they are in Europe and I am in America. It makes it extremely difficult. I want to be able to be there with him. Whether it is to deal with doctors or just hold him in my arms. But unfortunately I cannot go over there right now.
6 days ago my dad had his third seizure and is back in the hospital. He is able to walk and feed himself again but not really speaking much. I worry so much about his speech issues being permanent. He had come back from the previous seizures pretty well, and now this. These seizures have really been the breaking point for me. It is a constant worry and fear about the ramifications.
Just wanted to share so you know you’re not alone. What you are feeling is completely normal and understandable. We really do need to live in the moment and cherish our lives. I know that is what are fathers would want us to do as well.
Deb, your words helped me as well, so thank you for that.
Annie
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- November 10, 2016 at 1:37 pm
Thank you Jennifer. They started him on 250 milligrams of Keppra twice a day after he had the first seizure and they found the brain mets. After the second seizure they increased it to 500 milligrams twice a day. Now he is up to 1000 milligrams twice a day.
In retrospect I wish they would have started him on a larger dose so he might not have had to endure the seizures. Hopefully this dose will keep the seizures at bay though.I spoke with my mom and she had talk to him on the phone today. She was pleasantly surprised to hear he was actually saying a few full sentences.
Going in the right direction. He does have a mild fever now though. This happen the last time he was in the hospital after the seizure as well. They never found out why.Very anxious today though because he is having his first scan after he started Nivo… he has had four infusions so far. It has only been 7 weeks so it is likely nothing will show yet. I think they want to scan because of the latest seizure just to make sure everything is stable. That’s what they did last time.
I am on pins and needles right now. Obviously praying for positive results but also really worried the tumors could have grown.
Your dad will get stronger with each day. It sure is a process but we have to keep faith and try to think positive! Now if only this huge knot in my stomach could ease up a bit….
Annie
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- November 10, 2016 at 1:37 pm
Thank you Jennifer. They started him on 250 milligrams of Keppra twice a day after he had the first seizure and they found the brain mets. After the second seizure they increased it to 500 milligrams twice a day. Now he is up to 1000 milligrams twice a day.
In retrospect I wish they would have started him on a larger dose so he might not have had to endure the seizures. Hopefully this dose will keep the seizures at bay though.I spoke with my mom and she had talk to him on the phone today. She was pleasantly surprised to hear he was actually saying a few full sentences.
Going in the right direction. He does have a mild fever now though. This happen the last time he was in the hospital after the seizure as well. They never found out why.Very anxious today though because he is having his first scan after he started Nivo… he has had four infusions so far. It has only been 7 weeks so it is likely nothing will show yet. I think they want to scan because of the latest seizure just to make sure everything is stable. That’s what they did last time.
I am on pins and needles right now. Obviously praying for positive results but also really worried the tumors could have grown.
Your dad will get stronger with each day. It sure is a process but we have to keep faith and try to think positive! Now if only this huge knot in my stomach could ease up a bit….
Annie
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- November 10, 2016 at 1:37 pm
Thank you Jennifer. They started him on 250 milligrams of Keppra twice a day after he had the first seizure and they found the brain mets. After the second seizure they increased it to 500 milligrams twice a day. Now he is up to 1000 milligrams twice a day.
In retrospect I wish they would have started him on a larger dose so he might not have had to endure the seizures. Hopefully this dose will keep the seizures at bay though.I spoke with my mom and she had talk to him on the phone today. She was pleasantly surprised to hear he was actually saying a few full sentences.
Going in the right direction. He does have a mild fever now though. This happen the last time he was in the hospital after the seizure as well. They never found out why.Very anxious today though because he is having his first scan after he started Nivo… he has had four infusions so far. It has only been 7 weeks so it is likely nothing will show yet. I think they want to scan because of the latest seizure just to make sure everything is stable. That’s what they did last time.
I am on pins and needles right now. Obviously praying for positive results but also really worried the tumors could have grown.
Your dad will get stronger with each day. It sure is a process but we have to keep faith and try to think positive! Now if only this huge knot in my stomach could ease up a bit….
Annie
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- November 10, 2016 at 3:59 pm
ok. good. Glad to know he is on Keppra. Fortunately, my Dad started Keppra upon diagnosis of the brain mets and increased his dose after the Gamma Knife procedure, so far no seizures. Please keep me posted on the scan results, praying for some shrinkage and for moving in the right direction!
🙂
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- November 10, 2016 at 3:59 pm
ok. good. Glad to know he is on Keppra. Fortunately, my Dad started Keppra upon diagnosis of the brain mets and increased his dose after the Gamma Knife procedure, so far no seizures. Please keep me posted on the scan results, praying for some shrinkage and for moving in the right direction!
🙂
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- November 10, 2016 at 3:59 pm
ok. good. Glad to know he is on Keppra. Fortunately, my Dad started Keppra upon diagnosis of the brain mets and increased his dose after the Gamma Knife procedure, so far no seizures. Please keep me posted on the scan results, praying for some shrinkage and for moving in the right direction!
🙂
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