› Forums › General Melanoma Community › new brain tumors…
- This topic has 30 replies, 3 voices, and was last updated 11 years, 1 month ago by
susanr.
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- March 4, 2013 at 7:01 pm
After only a short time on Zel my father's tumors in his body grew. He is on a very low dose as he doesn't tolerate Z well. His last brain scan showed new tumors and we are meeting today with his neurological radiologist to discuss options, if any, today. (Dad is 82, diagnosed stage IV in October.) I expect to hear some talk about gamma knife today. Wondering about anyone's experience with this, effectiveness, side effects, etc. He is continuing on the Z for now until the brain mets are dealt with. Then they will do another body scan to see if it's working.
After only a short time on Zel my father's tumors in his body grew. He is on a very low dose as he doesn't tolerate Z well. His last brain scan showed new tumors and we are meeting today with his neurological radiologist to discuss options, if any, today. (Dad is 82, diagnosed stage IV in October.) I expect to hear some talk about gamma knife today. Wondering about anyone's experience with this, effectiveness, side effects, etc. He is continuing on the Z for now until the brain mets are dealt with. Then they will do another body scan to see if it's working. Dad continues to be weak and tired, losing weight, and his mental capacity is dwindling. He has no pain or nausea. We are giving him medical marijuana tincure for seizures and that seems to be doing the trick. I continue to count every small blessing.
Thank you. I'm sending you all love and light. ~Michelle
- Replies
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- March 4, 2013 at 11:18 pm
Michelle,
i am sorry about your Dad. I don't know what to say. I can't comment on gamma knife or WBR. I am thankful my brother did not have to do that. He died this past December at the age of 45. I don't think he had brain mets. He was too sharp at the end. If you review the recent posts, there are many patients fighting brian mets, and many had gamma knife, WBR.
Your Dad is 82, his age is a factor. You need to get his nutrition up and keep him comfortable. Pain and malnitrition will be worse than the melanoma. Keep up the fight…as long as this is what he wants. Nothing is 1,000 % in medicine. Keep up the fight for him and keep us posted. My thoughts are with you and ypur family.
Susan
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- March 4, 2013 at 11:18 pm
Michelle,
i am sorry about your Dad. I don't know what to say. I can't comment on gamma knife or WBR. I am thankful my brother did not have to do that. He died this past December at the age of 45. I don't think he had brain mets. He was too sharp at the end. If you review the recent posts, there are many patients fighting brian mets, and many had gamma knife, WBR.
Your Dad is 82, his age is a factor. You need to get his nutrition up and keep him comfortable. Pain and malnitrition will be worse than the melanoma. Keep up the fight…as long as this is what he wants. Nothing is 1,000 % in medicine. Keep up the fight for him and keep us posted. My thoughts are with you and ypur family.
Susan
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- March 5, 2013 at 7:41 pm
thank you susan. i appreciate your message. i'm so sorry about your brother. this disease is a beast.
we are lucky he has no pain at all. it's a miracle considering the amount of tumors he has.
the doctor visit left us with the option of stopping all treatment since it seems to be harder on him than the disease. his quality of life has suffered. so today we are discussing stopping treatment and seeing how he fares. maybe he will get some appetite back and gain weight and then be able to handle the gamma knife treatment. no one knows. no one really knows anything. it all seems like one big crap shoot sometimes.
dad is a fighter so stopping treatment is a huge decision for him. my mom is holding on by a thread. this is so hard.
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- March 5, 2013 at 7:54 pm
just off phone w/ doc. he says he thinks the new brain tumors are a game changer and does not recommend any more treatment at this time. he thinks dad should concentrate on being comfortable at home with family and not deal with any more hospitals and treatments. i so appreciate his candor!!! hard to hear but refreshing nonetheless. and now i must go call my parents and tell them this. *sigh* xo ~m
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- March 5, 2013 at 7:54 pm
just off phone w/ doc. he says he thinks the new brain tumors are a game changer and does not recommend any more treatment at this time. he thinks dad should concentrate on being comfortable at home with family and not deal with any more hospitals and treatments. i so appreciate his candor!!! hard to hear but refreshing nonetheless. and now i must go call my parents and tell them this. *sigh* xo ~m
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- March 5, 2013 at 7:54 pm
just off phone w/ doc. he says he thinks the new brain tumors are a game changer and does not recommend any more treatment at this time. he thinks dad should concentrate on being comfortable at home with family and not deal with any more hospitals and treatments. i so appreciate his candor!!! hard to hear but refreshing nonetheless. and now i must go call my parents and tell them this. *sigh* xo ~m
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- March 6, 2013 at 5:28 pm
I am sorry. I truly understand what you are going through…trust me. Within 2 mths, my brother went from some response to treatment to falling off a cliff and his onc. said….nothing is working and then hospice.
What my family did first was… talked to my brother…what were his wishes…fight or not. He did not want to do anymore treatment. It killed us that he said that but at least we knew what his wishes were and did all that we could.
We did find some comfort in this decision by him. It does not make it easier but just that all was done and this was my brother's and God's decision. I guess what I am trying to say is,,,If you sit down and talk to your parents…find out what he wants, it will make the next step easier to make. If he wants to fight..then talk to the docotrs. If he wants peace and quality time then make him comfortable and make everyday special. If your family are believers in faith then that will get you through. My faith has been tested so don't rely on my input about faith…there are quite a few patients on this forum that are very spiritual and very good to talk to…I hope this helps. Keep us posted. My thoughts to you and your family.
Susan
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- March 6, 2013 at 5:28 pm
I am sorry. I truly understand what you are going through…trust me. Within 2 mths, my brother went from some response to treatment to falling off a cliff and his onc. said….nothing is working and then hospice.
What my family did first was… talked to my brother…what were his wishes…fight or not. He did not want to do anymore treatment. It killed us that he said that but at least we knew what his wishes were and did all that we could.
We did find some comfort in this decision by him. It does not make it easier but just that all was done and this was my brother's and God's decision. I guess what I am trying to say is,,,If you sit down and talk to your parents…find out what he wants, it will make the next step easier to make. If he wants to fight..then talk to the docotrs. If he wants peace and quality time then make him comfortable and make everyday special. If your family are believers in faith then that will get you through. My faith has been tested so don't rely on my input about faith…there are quite a few patients on this forum that are very spiritual and very good to talk to…I hope this helps. Keep us posted. My thoughts to you and your family.
Susan
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- March 6, 2013 at 9:40 pm
Thank you again Susan. We are discussing all this with Dad, but he often seems so confused. I'm not really sure he can make this decision sometimes, but then other times he seems he can. It's so hard to watch this.
I'm sorry about your brother. I'm glad your fath has pulled you through somehow… even if it has been tested. So much is unknown about this dreaded disease… and the way it tricks the body, immune system, and treatments, is just insanity.
If it's any comfort, to you, to me, to anyone… sometimes I try to think that we are all exactly where we are supposed to be at any given time and we must find the blessings and small gratitudes somehow. Some days that is harder than others.
My philosophy and faith is "be here now". I try to preach that to my parents. I think they get it but they still wonder "why"?
Sending love, peace, and warmth,
Michelle
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- March 6, 2013 at 9:40 pm
Thank you again Susan. We are discussing all this with Dad, but he often seems so confused. I'm not really sure he can make this decision sometimes, but then other times he seems he can. It's so hard to watch this.
I'm sorry about your brother. I'm glad your fath has pulled you through somehow… even if it has been tested. So much is unknown about this dreaded disease… and the way it tricks the body, immune system, and treatments, is just insanity.
If it's any comfort, to you, to me, to anyone… sometimes I try to think that we are all exactly where we are supposed to be at any given time and we must find the blessings and small gratitudes somehow. Some days that is harder than others.
My philosophy and faith is "be here now". I try to preach that to my parents. I think they get it but they still wonder "why"?
Sending love, peace, and warmth,
Michelle
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- March 8, 2013 at 12:10 am
Michelle, Again, I am so sorry. You sound likea very nice person who loves their parents. This cancer really "sucks"..hope you don't mind my bluntness. I just hope your dad finds comfort. Your words are very soothing and I am sure you all can make a plan. I still feel anything can happen. Just try to homor his wishes even if he still wants to fight. I do believe the treatment is sometimes worse than the disease and this decides patients minds on continuing treatment. I wish I could say something to make things better or make sense. I really know what you are going through. if you need to vent or talk I will look out for your post.
Thank you for your kind thoughts about my brother. It destroyed us and changed us forever. It destroyed me watching my parents and his kids bury their son/father. He was only 45 and all his kids are under the age of 13.
Keep in touch
Susan
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- March 8, 2013 at 12:10 am
Michelle, Again, I am so sorry. You sound likea very nice person who loves their parents. This cancer really "sucks"..hope you don't mind my bluntness. I just hope your dad finds comfort. Your words are very soothing and I am sure you all can make a plan. I still feel anything can happen. Just try to homor his wishes even if he still wants to fight. I do believe the treatment is sometimes worse than the disease and this decides patients minds on continuing treatment. I wish I could say something to make things better or make sense. I really know what you are going through. if you need to vent or talk I will look out for your post.
Thank you for your kind thoughts about my brother. It destroyed us and changed us forever. It destroyed me watching my parents and his kids bury their son/father. He was only 45 and all his kids are under the age of 13.
Keep in touch
Susan
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- March 8, 2013 at 12:10 am
Michelle, Again, I am so sorry. You sound likea very nice person who loves their parents. This cancer really "sucks"..hope you don't mind my bluntness. I just hope your dad finds comfort. Your words are very soothing and I am sure you all can make a plan. I still feel anything can happen. Just try to homor his wishes even if he still wants to fight. I do believe the treatment is sometimes worse than the disease and this decides patients minds on continuing treatment. I wish I could say something to make things better or make sense. I really know what you are going through. if you need to vent or talk I will look out for your post.
Thank you for your kind thoughts about my brother. It destroyed us and changed us forever. It destroyed me watching my parents and his kids bury their son/father. He was only 45 and all his kids are under the age of 13.
Keep in touch
Susan
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- March 8, 2013 at 4:03 am
Susan, That is so young! I lost a friend from this disease who was my age… 54. He left his young son, too. It's a heart breaker for sure. I'm so sorry for your loss. Of course this changed you. That's how we learn and grow, through lifes experiences, all of them, but the hardest ones leave us scarred, for sure.
Today the decision was made to stop all treatment except the marijuana tincture. We are hoping his appetite will improve and therefore his strength and quality of life. Someone said "one day at a time" and my Mom said "that's all we ever had anyway". So true.
So we count our blessings, share our love, cherish small things and go on.
Thank you for being here for me. I am here for you, too.
Peace and Love,
Michelle
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- March 8, 2013 at 4:03 am
Susan, That is so young! I lost a friend from this disease who was my age… 54. He left his young son, too. It's a heart breaker for sure. I'm so sorry for your loss. Of course this changed you. That's how we learn and grow, through lifes experiences, all of them, but the hardest ones leave us scarred, for sure.
Today the decision was made to stop all treatment except the marijuana tincture. We are hoping his appetite will improve and therefore his strength and quality of life. Someone said "one day at a time" and my Mom said "that's all we ever had anyway". So true.
So we count our blessings, share our love, cherish small things and go on.
Thank you for being here for me. I am here for you, too.
Peace and Love,
Michelle
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- March 8, 2013 at 4:36 am
Michelle, you are a dear daughter and a very sensitive caregiver. I am so glad that you and your family asked your father about his wishes and then acted accordingly. I wish him many months of living in comfort, finding joy with his family, and fun pursuing his usual activites. Being off the "treatment treadmill" can be very liberating.
You should feel good about how lovingly you have tried to make your father's journey be what HE wanted it to be– during treatment and after. Please let us know how things progress.
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- March 8, 2013 at 4:36 am
Michelle, you are a dear daughter and a very sensitive caregiver. I am so glad that you and your family asked your father about his wishes and then acted accordingly. I wish him many months of living in comfort, finding joy with his family, and fun pursuing his usual activites. Being off the "treatment treadmill" can be very liberating.
You should feel good about how lovingly you have tried to make your father's journey be what HE wanted it to be– during treatment and after. Please let us know how things progress.
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- March 8, 2013 at 4:41 am
thank you POW. i really appreciate hearing that. you are so kind to take the time out to say these things to me.
peace and love, michelle
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- March 8, 2013 at 4:41 am
thank you POW. i really appreciate hearing that. you are so kind to take the time out to say these things to me.
peace and love, michelle
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- March 8, 2013 at 4:41 am
thank you POW. i really appreciate hearing that. you are so kind to take the time out to say these things to me.
peace and love, michelle
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- March 8, 2013 at 4:36 am
Michelle, you are a dear daughter and a very sensitive caregiver. I am so glad that you and your family asked your father about his wishes and then acted accordingly. I wish him many months of living in comfort, finding joy with his family, and fun pursuing his usual activites. Being off the "treatment treadmill" can be very liberating.
You should feel good about how lovingly you have tried to make your father's journey be what HE wanted it to be– during treatment and after. Please let us know how things progress.
-
- March 8, 2013 at 4:03 am
Susan, That is so young! I lost a friend from this disease who was my age… 54. He left his young son, too. It's a heart breaker for sure. I'm so sorry for your loss. Of course this changed you. That's how we learn and grow, through lifes experiences, all of them, but the hardest ones leave us scarred, for sure.
Today the decision was made to stop all treatment except the marijuana tincture. We are hoping his appetite will improve and therefore his strength and quality of life. Someone said "one day at a time" and my Mom said "that's all we ever had anyway". So true.
So we count our blessings, share our love, cherish small things and go on.
Thank you for being here for me. I am here for you, too.
Peace and Love,
Michelle
-
- March 6, 2013 at 9:40 pm
Thank you again Susan. We are discussing all this with Dad, but he often seems so confused. I'm not really sure he can make this decision sometimes, but then other times he seems he can. It's so hard to watch this.
I'm sorry about your brother. I'm glad your fath has pulled you through somehow… even if it has been tested. So much is unknown about this dreaded disease… and the way it tricks the body, immune system, and treatments, is just insanity.
If it's any comfort, to you, to me, to anyone… sometimes I try to think that we are all exactly where we are supposed to be at any given time and we must find the blessings and small gratitudes somehow. Some days that is harder than others.
My philosophy and faith is "be here now". I try to preach that to my parents. I think they get it but they still wonder "why"?
Sending love, peace, and warmth,
Michelle
-
- March 6, 2013 at 5:28 pm
I am sorry. I truly understand what you are going through…trust me. Within 2 mths, my brother went from some response to treatment to falling off a cliff and his onc. said….nothing is working and then hospice.
What my family did first was… talked to my brother…what were his wishes…fight or not. He did not want to do anymore treatment. It killed us that he said that but at least we knew what his wishes were and did all that we could.
We did find some comfort in this decision by him. It does not make it easier but just that all was done and this was my brother's and God's decision. I guess what I am trying to say is,,,If you sit down and talk to your parents…find out what he wants, it will make the next step easier to make. If he wants to fight..then talk to the docotrs. If he wants peace and quality time then make him comfortable and make everyday special. If your family are believers in faith then that will get you through. My faith has been tested so don't rely on my input about faith…there are quite a few patients on this forum that are very spiritual and very good to talk to…I hope this helps. Keep us posted. My thoughts to you and your family.
Susan
-
- March 5, 2013 at 7:41 pm
thank you susan. i appreciate your message. i'm so sorry about your brother. this disease is a beast.
we are lucky he has no pain at all. it's a miracle considering the amount of tumors he has.
the doctor visit left us with the option of stopping all treatment since it seems to be harder on him than the disease. his quality of life has suffered. so today we are discussing stopping treatment and seeing how he fares. maybe he will get some appetite back and gain weight and then be able to handle the gamma knife treatment. no one knows. no one really knows anything. it all seems like one big crap shoot sometimes.
dad is a fighter so stopping treatment is a huge decision for him. my mom is holding on by a thread. this is so hard.
-
- March 5, 2013 at 7:41 pm
thank you susan. i appreciate your message. i'm so sorry about your brother. this disease is a beast.
we are lucky he has no pain at all. it's a miracle considering the amount of tumors he has.
the doctor visit left us with the option of stopping all treatment since it seems to be harder on him than the disease. his quality of life has suffered. so today we are discussing stopping treatment and seeing how he fares. maybe he will get some appetite back and gain weight and then be able to handle the gamma knife treatment. no one knows. no one really knows anything. it all seems like one big crap shoot sometimes.
dad is a fighter so stopping treatment is a huge decision for him. my mom is holding on by a thread. this is so hard.
-
- March 4, 2013 at 11:18 pm
Michelle,
i am sorry about your Dad. I don't know what to say. I can't comment on gamma knife or WBR. I am thankful my brother did not have to do that. He died this past December at the age of 45. I don't think he had brain mets. He was too sharp at the end. If you review the recent posts, there are many patients fighting brian mets, and many had gamma knife, WBR.
Your Dad is 82, his age is a factor. You need to get his nutrition up and keep him comfortable. Pain and malnitrition will be worse than the melanoma. Keep up the fight…as long as this is what he wants. Nothing is 1,000 % in medicine. Keep up the fight for him and keep us posted. My thoughts are with you and ypur family.
Susan
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