› Forums › General Melanoma Community › Scared my mom has the worst type of melanoma ever
- This topic has 21 replies, 7 voices, and was last updated 12 years, 5 months ago by
FormerCaregiver.
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- November 16, 2011 at 2:48 pm
Hi,
Hi,
We got some not so good news today. My mom finished her IPI treatments. December 1 is "week 20" when they supposedly do the scans that show if it's working or not. Today, she had a brain scan that showed a new tumor in the back of her brain. it grew in 3 months. She had had a previous met to the brain that was zapped by SRS and is now totally gone (per same brain scan). This second tumor is bleeding. they don't know how big the actual tumor is because of the blood, but with blood included it is 1.5 cm in maximal dimension. My mom had some swelling following the first SRS treatment (both tumors have been asymptomatic – she has no neurological deficits whatsoever – not even a headache). due to the location of this new tumor (back of the brain), SRS therapy is undesirable because swelling from it could potentially affect her eyesight. the plan is to remove the tumor and the hemorrhage surgically, then zap it with the SRS. once the mass is removed, swelling from SRS is apparently less of an issue. her surgeon literally told her that since it's on the surface, it'll be "a piece of cake." But, i can't help but feeling like it's eating a piece of cake while you're going down on the Titanic, you know?
I just feel like my mom is getting the sh–ttiest bum rap around – pardon my friench. She's braf negative, she's got brain mets (disqualifies you for trials), she has psoriasis (autoimmune disorder that can disqualify you for trials), she has visceral mets (that are actively bleeding and causing her to become anemic and require bi-weekly transfusions). Literally in July of this year we went shopping together and she was fine – absolutely fine. it was July, just four months ago. now she's too tired to grocery shop. is it the IPI or is she dying? i know brain mets and visceral mets have like the worst prognosis around. i just feel like we can't get a break.
I'm scared i'm never going to get to go shopping with my mom again. do you think it's OK to cry in front of her? sorry if this is a stupid post. i'm just so scared.
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- November 16, 2011 at 4:37 pm
I can *hear* your fear and sadness in your post and just wish I could reach out and give you a big hug. I don't have any answers for you, I am sorry. I am a mom of 3 older children myself so I wonder at times what their feelings and thoughts are that we don't talk about. We share everything so if you have that kind of relationship with your Mom, then by all means tell her how you are feeling.
Now, don't give up. Treatment is rough. Besides dealing with treatment there are days of being 'bummed out'. You can be tired all the time. Your Mom might just be at that point right now. How about having an internet shopping day for now? Shop, lunch, dessert…whatever. ( I could not walk without a walker and the pain that showed on my face even when I did (March, April and May). I lost 40lbs. I had to sleep in a chair. Today I go shopping with my daughters and we all go out to dinner with the families, etc. Keep the hope! )
Karin
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- November 16, 2011 at 4:37 pm
I can *hear* your fear and sadness in your post and just wish I could reach out and give you a big hug. I don't have any answers for you, I am sorry. I am a mom of 3 older children myself so I wonder at times what their feelings and thoughts are that we don't talk about. We share everything so if you have that kind of relationship with your Mom, then by all means tell her how you are feeling.
Now, don't give up. Treatment is rough. Besides dealing with treatment there are days of being 'bummed out'. You can be tired all the time. Your Mom might just be at that point right now. How about having an internet shopping day for now? Shop, lunch, dessert…whatever. ( I could not walk without a walker and the pain that showed on my face even when I did (March, April and May). I lost 40lbs. I had to sleep in a chair. Today I go shopping with my daughters and we all go out to dinner with the families, etc. Keep the hope! )
Karin
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- November 16, 2011 at 4:37 pm
I can *hear* your fear and sadness in your post and just wish I could reach out and give you a big hug. I don't have any answers for you, I am sorry. I am a mom of 3 older children myself so I wonder at times what their feelings and thoughts are that we don't talk about. We share everything so if you have that kind of relationship with your Mom, then by all means tell her how you are feeling.
Now, don't give up. Treatment is rough. Besides dealing with treatment there are days of being 'bummed out'. You can be tired all the time. Your Mom might just be at that point right now. How about having an internet shopping day for now? Shop, lunch, dessert…whatever. ( I could not walk without a walker and the pain that showed on my face even when I did (March, April and May). I lost 40lbs. I had to sleep in a chair. Today I go shopping with my daughters and we all go out to dinner with the families, etc. Keep the hope! )
Karin
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- November 16, 2011 at 8:10 pm
First, the brain met. In Dec. 2010, I had a craniotomy for a 1CM met at the back of my head. It was pretty scary, but looking back, it really was easy. No pain, so side effects other than a small vision cut out at the periphery of one eye that I cannot even notice unless I'm thinking about it). My surgeon characterized it as a 9 out of 10 on the easy scale so it sounds similar to your mom's met location. I was out of the hospital in one day. I've been met free in the brain now for 10 months and qualify for most trials again. It's not a lifetime exclusion for all of these trials
I don't have any experience with visceral mets, so I cannot offer any input there.
As for crying in front of your mom, I've gotta go with "no". My wife remains constantly upbeat and I find that a relief. I know that she's suffering along with me, but if she were to be expressing her worst fears frequently, I would feel the need to be the upbeat one. When we get bad news, we cry together for a few minutes, then we start modifying our plan and get on with things. We're too busy living to be worrying about dying.
Your mom is lucky to have a daughter that cares so much.
cltml
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- November 16, 2011 at 8:41 pm
I am afraid I am not good with medical issues, and have not dealt with brain mets.
I can answer from a mom with stage 4 melanoma and 3 children in their 20s. This is MY opinion only and what I would want. I would be ok and even maybe relieved if my daughter cried and hugged me and told me she was scared As her mom I can see she and my boys are worried and they are being brave for me and I for them I find it very isolating everyone holding in their emotions/fears isolating for them and for me. Her crying in front of me would NOT make me feel she has given up hope or that she doesnt think I can make it. IT would just be her way of saying out loud she was scared and that is something I already know. It would give me that chance as a mom to hug my child and love her when she was hurting. I am not saying cry all the time, just saying for me it would NOT be a bad thing – again that is my opinion. others will disagree, including my husband.
my prayers are with you and your mom
laurie from maine
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- November 16, 2011 at 8:41 pm
I am afraid I am not good with medical issues, and have not dealt with brain mets.
I can answer from a mom with stage 4 melanoma and 3 children in their 20s. This is MY opinion only and what I would want. I would be ok and even maybe relieved if my daughter cried and hugged me and told me she was scared As her mom I can see she and my boys are worried and they are being brave for me and I for them I find it very isolating everyone holding in their emotions/fears isolating for them and for me. Her crying in front of me would NOT make me feel she has given up hope or that she doesnt think I can make it. IT would just be her way of saying out loud she was scared and that is something I already know. It would give me that chance as a mom to hug my child and love her when she was hurting. I am not saying cry all the time, just saying for me it would NOT be a bad thing – again that is my opinion. others will disagree, including my husband.
my prayers are with you and your mom
laurie from maine
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- November 16, 2011 at 8:41 pm
I am afraid I am not good with medical issues, and have not dealt with brain mets.
I can answer from a mom with stage 4 melanoma and 3 children in their 20s. This is MY opinion only and what I would want. I would be ok and even maybe relieved if my daughter cried and hugged me and told me she was scared As her mom I can see she and my boys are worried and they are being brave for me and I for them I find it very isolating everyone holding in their emotions/fears isolating for them and for me. Her crying in front of me would NOT make me feel she has given up hope or that she doesnt think I can make it. IT would just be her way of saying out loud she was scared and that is something I already know. It would give me that chance as a mom to hug my child and love her when she was hurting. I am not saying cry all the time, just saying for me it would NOT be a bad thing – again that is my opinion. others will disagree, including my husband.
my prayers are with you and your mom
laurie from maine
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- November 16, 2011 at 8:10 pm
First, the brain met. In Dec. 2010, I had a craniotomy for a 1CM met at the back of my head. It was pretty scary, but looking back, it really was easy. No pain, so side effects other than a small vision cut out at the periphery of one eye that I cannot even notice unless I'm thinking about it). My surgeon characterized it as a 9 out of 10 on the easy scale so it sounds similar to your mom's met location. I was out of the hospital in one day. I've been met free in the brain now for 10 months and qualify for most trials again. It's not a lifetime exclusion for all of these trials
I don't have any experience with visceral mets, so I cannot offer any input there.
As for crying in front of your mom, I've gotta go with "no". My wife remains constantly upbeat and I find that a relief. I know that she's suffering along with me, but if she were to be expressing her worst fears frequently, I would feel the need to be the upbeat one. When we get bad news, we cry together for a few minutes, then we start modifying our plan and get on with things. We're too busy living to be worrying about dying.
Your mom is lucky to have a daughter that cares so much.
cltml
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- November 16, 2011 at 8:10 pm
First, the brain met. In Dec. 2010, I had a craniotomy for a 1CM met at the back of my head. It was pretty scary, but looking back, it really was easy. No pain, so side effects other than a small vision cut out at the periphery of one eye that I cannot even notice unless I'm thinking about it). My surgeon characterized it as a 9 out of 10 on the easy scale so it sounds similar to your mom's met location. I was out of the hospital in one day. I've been met free in the brain now for 10 months and qualify for most trials again. It's not a lifetime exclusion for all of these trials
I don't have any experience with visceral mets, so I cannot offer any input there.
As for crying in front of your mom, I've gotta go with "no". My wife remains constantly upbeat and I find that a relief. I know that she's suffering along with me, but if she were to be expressing her worst fears frequently, I would feel the need to be the upbeat one. When we get bad news, we cry together for a few minutes, then we start modifying our plan and get on with things. We're too busy living to be worrying about dying.
Your mom is lucky to have a daughter that cares so much.
cltml
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- November 16, 2011 at 8:24 pm
Sorry to hear about the problems with your mom. For many of us who suffer from this ourselves, I know it would be hard to see my children crying about it, thankfully, but unthankfully (I'm unthankful that they are so young as I want to see them grow up!), they are still too young to understand the horrible cancer that we have. it all depends on how close you too are , I'm sure she doesn't want you to be all depressed about it too, since it's already ruining her life, please don't let it ruin yours! You need to be her inspiration, a reason for her to keep fighting and want to make it thru each step.
You can always tell her, whether you do now, or not, is that you LOVE HER and want to see her beat this beast, no matter what it takes, and that you will be there for her thru the good & bad days and you'll cry with her if she needs it.
Besides my husband, there is nobody else in my family who wants to hear all the bad things, they all say "prayer will get you thru", even my own parents don't want to listen to me complain about how much cancer sucks, my mom lives in fear of it I think, and my dad wants me to stay strong and fight it with all I have and hope that more treatments continue to come out. I'm not a religious person, so prayers do nothing for me, so that doesn't hold any value in my belief that I am going to fight this beast will all I have. I believe it's up to me & my doctors and our decisions together or me by myself, that is going to get me as far as I can.
You just need to make sure as her daughter, you are there to help see these treatments thru and help her get thru them. Don't talk badly about the treatments in front of her, you can explain your opinion of what treatment you think would be better though, etc.
I had a Craniotomy in June 2011, had about a 10 inch incision on the front of head, and my tumor was above my left eye, it affected my vision for a few weeks before I went to the doctor, which is when they discovered I had cancer during that scan, Stage IV (Brain, Liver & Right Lung). It was not until they went in and removed it, and sent it away that they found out it was Melanoma. Up until a few days ago, I never realized how crazy Brain surgery is, but these people know what they are doing! They aren't going deep within the brain, they are on the surface for many of these, and easier to get ahold of and remove, with after treatments to treat what's left (Gamma Knife, SRS, etc).
I just wish her the best of luck no matter what they do, and you stay strong for her!
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- November 16, 2011 at 8:24 pm
Sorry to hear about the problems with your mom. For many of us who suffer from this ourselves, I know it would be hard to see my children crying about it, thankfully, but unthankfully (I'm unthankful that they are so young as I want to see them grow up!), they are still too young to understand the horrible cancer that we have. it all depends on how close you too are , I'm sure she doesn't want you to be all depressed about it too, since it's already ruining her life, please don't let it ruin yours! You need to be her inspiration, a reason for her to keep fighting and want to make it thru each step.
You can always tell her, whether you do now, or not, is that you LOVE HER and want to see her beat this beast, no matter what it takes, and that you will be there for her thru the good & bad days and you'll cry with her if she needs it.
Besides my husband, there is nobody else in my family who wants to hear all the bad things, they all say "prayer will get you thru", even my own parents don't want to listen to me complain about how much cancer sucks, my mom lives in fear of it I think, and my dad wants me to stay strong and fight it with all I have and hope that more treatments continue to come out. I'm not a religious person, so prayers do nothing for me, so that doesn't hold any value in my belief that I am going to fight this beast will all I have. I believe it's up to me & my doctors and our decisions together or me by myself, that is going to get me as far as I can.
You just need to make sure as her daughter, you are there to help see these treatments thru and help her get thru them. Don't talk badly about the treatments in front of her, you can explain your opinion of what treatment you think would be better though, etc.
I had a Craniotomy in June 2011, had about a 10 inch incision on the front of head, and my tumor was above my left eye, it affected my vision for a few weeks before I went to the doctor, which is when they discovered I had cancer during that scan, Stage IV (Brain, Liver & Right Lung). It was not until they went in and removed it, and sent it away that they found out it was Melanoma. Up until a few days ago, I never realized how crazy Brain surgery is, but these people know what they are doing! They aren't going deep within the brain, they are on the surface for many of these, and easier to get ahold of and remove, with after treatments to treat what's left (Gamma Knife, SRS, etc).
I just wish her the best of luck no matter what they do, and you stay strong for her!
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- November 16, 2011 at 8:24 pm
Sorry to hear about the problems with your mom. For many of us who suffer from this ourselves, I know it would be hard to see my children crying about it, thankfully, but unthankfully (I'm unthankful that they are so young as I want to see them grow up!), they are still too young to understand the horrible cancer that we have. it all depends on how close you too are , I'm sure she doesn't want you to be all depressed about it too, since it's already ruining her life, please don't let it ruin yours! You need to be her inspiration, a reason for her to keep fighting and want to make it thru each step.
You can always tell her, whether you do now, or not, is that you LOVE HER and want to see her beat this beast, no matter what it takes, and that you will be there for her thru the good & bad days and you'll cry with her if she needs it.
Besides my husband, there is nobody else in my family who wants to hear all the bad things, they all say "prayer will get you thru", even my own parents don't want to listen to me complain about how much cancer sucks, my mom lives in fear of it I think, and my dad wants me to stay strong and fight it with all I have and hope that more treatments continue to come out. I'm not a religious person, so prayers do nothing for me, so that doesn't hold any value in my belief that I am going to fight this beast will all I have. I believe it's up to me & my doctors and our decisions together or me by myself, that is going to get me as far as I can.
You just need to make sure as her daughter, you are there to help see these treatments thru and help her get thru them. Don't talk badly about the treatments in front of her, you can explain your opinion of what treatment you think would be better though, etc.
I had a Craniotomy in June 2011, had about a 10 inch incision on the front of head, and my tumor was above my left eye, it affected my vision for a few weeks before I went to the doctor, which is when they discovered I had cancer during that scan, Stage IV (Brain, Liver & Right Lung). It was not until they went in and removed it, and sent it away that they found out it was Melanoma. Up until a few days ago, I never realized how crazy Brain surgery is, but these people know what they are doing! They aren't going deep within the brain, they are on the surface for many of these, and easier to get ahold of and remove, with after treatments to treat what's left (Gamma Knife, SRS, etc).
I just wish her the best of luck no matter what they do, and you stay strong for her!
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- November 16, 2011 at 8:25 pm
Cancer is not an individual disease it effects the family as a whole. My husband has melanoma and is undergoing treatment. I am so sorry to hear about your mom. She sounds likes a fighter.
You are going to have to learn to stay in the present. Enjoy life day by day, hour by hour and sometimes it will be minute by minute. It's okay to cry in front of your mom and let her comfort you. Some days she may cry in front of you and need your comfort.
My best wishes and prayers.
Pamela
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- November 16, 2011 at 8:25 pm
Cancer is not an individual disease it effects the family as a whole. My husband has melanoma and is undergoing treatment. I am so sorry to hear about your mom. She sounds likes a fighter.
You are going to have to learn to stay in the present. Enjoy life day by day, hour by hour and sometimes it will be minute by minute. It's okay to cry in front of your mom and let her comfort you. Some days she may cry in front of you and need your comfort.
My best wishes and prayers.
Pamela
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- November 16, 2011 at 8:25 pm
Cancer is not an individual disease it effects the family as a whole. My husband has melanoma and is undergoing treatment. I am so sorry to hear about your mom. She sounds likes a fighter.
You are going to have to learn to stay in the present. Enjoy life day by day, hour by hour and sometimes it will be minute by minute. It's okay to cry in front of your mom and let her comfort you. Some days she may cry in front of you and need your comfort.
My best wishes and prayers.
Pamela
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- November 17, 2011 at 12:26 am
I’m so sorry you’re growing so scared and not positive at all in regards to your mom.
I’m 41 with a 2 year old daughter and just had scan after ipi. Almost all the mets in my lungs has shrunk by 50 percent and some have disappeared. They also found 2 brain tumours which obviously made their way to my brain from July onwards. I just had gamma knife yesterday and feel great. I’m hoping both will shrink and go away. I have spoken to a couple of people who claim they also had new brain mets after a successful ipi treatment. One man hasn’t had anymore for 17 months likely because the ipi is keeping them from growing, this is my hope for myself.Once your mom gets her scan news from ipi, you’ll know how she’s done on it. She may be able to get those brain tumours gamma knifed and then they may never grow again. Please believe this as hard as you can and keep your mom positive as well. I feel fantastic despite having cancer in my lungs and now brain. It’s hard to imagine I have cancer, but I refuse to put my mind in a horrible place.
This may seems like the worst, but people have been treated before for brain mets and some are still here years later. Don’t give up!
Lisa
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- November 17, 2011 at 12:26 am
I’m so sorry you’re growing so scared and not positive at all in regards to your mom.
I’m 41 with a 2 year old daughter and just had scan after ipi. Almost all the mets in my lungs has shrunk by 50 percent and some have disappeared. They also found 2 brain tumours which obviously made their way to my brain from July onwards. I just had gamma knife yesterday and feel great. I’m hoping both will shrink and go away. I have spoken to a couple of people who claim they also had new brain mets after a successful ipi treatment. One man hasn’t had anymore for 17 months likely because the ipi is keeping them from growing, this is my hope for myself.Once your mom gets her scan news from ipi, you’ll know how she’s done on it. She may be able to get those brain tumours gamma knifed and then they may never grow again. Please believe this as hard as you can and keep your mom positive as well. I feel fantastic despite having cancer in my lungs and now brain. It’s hard to imagine I have cancer, but I refuse to put my mind in a horrible place.
This may seems like the worst, but people have been treated before for brain mets and some are still here years later. Don’t give up!
Lisa
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- November 17, 2011 at 12:26 am
I’m so sorry you’re growing so scared and not positive at all in regards to your mom.
I’m 41 with a 2 year old daughter and just had scan after ipi. Almost all the mets in my lungs has shrunk by 50 percent and some have disappeared. They also found 2 brain tumours which obviously made their way to my brain from July onwards. I just had gamma knife yesterday and feel great. I’m hoping both will shrink and go away. I have spoken to a couple of people who claim they also had new brain mets after a successful ipi treatment. One man hasn’t had anymore for 17 months likely because the ipi is keeping them from growing, this is my hope for myself.Once your mom gets her scan news from ipi, you’ll know how she’s done on it. She may be able to get those brain tumours gamma knifed and then they may never grow again. Please believe this as hard as you can and keep your mom positive as well. I feel fantastic despite having cancer in my lungs and now brain. It’s hard to imagine I have cancer, but I refuse to put my mind in a horrible place.
This may seems like the worst, but people have been treated before for brain mets and some are still here years later. Don’t give up!
Lisa
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- November 17, 2011 at 3:15 am
Sorry to read about your mother's latest scan results. Surgery, if possible, is generally the best way to deal with any tumour that may appear. It is encouraging that the surgeon thinks that it will be "a piece of cake". If there is no reason to think otherwise, then I would certainly have confidence in the surgeon's abilities for a successful outcome.
Can you tell me about your mother's psoriasis? I am interested in this area, and have written about it some time ago. What sort of treatment has she had for that?
Please consider any treatments that your mother might be eligible for. There are new drugs being developed all the time, and there is always a chance that something might be effective.
Tiredness or fatigue can be caused by many things including melanoma and/or its treatment. Perhaps, it would be wise to discuss your concerns with the oncologist?
Hope this helps
Frank from Australia
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- November 17, 2011 at 3:15 am
Sorry to read about your mother's latest scan results. Surgery, if possible, is generally the best way to deal with any tumour that may appear. It is encouraging that the surgeon thinks that it will be "a piece of cake". If there is no reason to think otherwise, then I would certainly have confidence in the surgeon's abilities for a successful outcome.
Can you tell me about your mother's psoriasis? I am interested in this area, and have written about it some time ago. What sort of treatment has she had for that?
Please consider any treatments that your mother might be eligible for. There are new drugs being developed all the time, and there is always a chance that something might be effective.
Tiredness or fatigue can be caused by many things including melanoma and/or its treatment. Perhaps, it would be wise to discuss your concerns with the oncologist?
Hope this helps
Frank from Australia
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- November 17, 2011 at 3:15 am
Sorry to read about your mother's latest scan results. Surgery, if possible, is generally the best way to deal with any tumour that may appear. It is encouraging that the surgeon thinks that it will be "a piece of cake". If there is no reason to think otherwise, then I would certainly have confidence in the surgeon's abilities for a successful outcome.
Can you tell me about your mother's psoriasis? I am interested in this area, and have written about it some time ago. What sort of treatment has she had for that?
Please consider any treatments that your mother might be eligible for. There are new drugs being developed all the time, and there is always a chance that something might be effective.
Tiredness or fatigue can be caused by many things including melanoma and/or its treatment. Perhaps, it would be wise to discuss your concerns with the oncologist?
Hope this helps
Frank from Australia
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