AllysonRuth

I have had 8 doses of Pembro almost ready to have dose number 9.  I have a 3 and 4 year old so I completely understand your positiion.  While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired.  However, my side effects have increased with almost every dose.  I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro."   Even with the side effects, it isn't that bad.

Good luck!  

Allyson

I have had 8 doses of Pembro almost ready to have dose number 9.  I have a 3 and 4 year old so I completely understand your positiion.  While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired.  However, my side effects have increased with almost every dose.  I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro."   Even with the side effects, it isn't that bad.

Good luck!  

Allyson

I have had 8 doses of Pembro almost ready to have dose number 9.  I have a 3 and 4 year old so I completely understand your positiion.  While the side effects are individualized and varied, after first dose I had very few side effects, just a bit tired.  However, my side effects have increased with almost every dose.  I won't bother you with listing all of my side effects, my doctor at Mayo just keeps telling me, "Well, we don't normally see this with Pembro."   Even with the side effects, it isn't that bad.

Good luck!  

Allyson

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

Hi,

I have five children, ages 14, 12, 9, 4 and 3.  I was diagnosed last October.  I am stage IV with two brain tumors, lung and intestinal mets.   I am treated at the Mayo Clinic and have been gone from home for weeks at a time, with radiation, treatment, etc.   It has been very hard on my family.  

One of the things that has been helpful is giving a forum for the kids to express their feelings on a regular basis in a safe environment, we will do it over Skype if I am gone, so we can keep the consistent routine which helps kids feel more safe.   Most evenings we gather as a family for a family devotional.   We read a scripture, say a prayer and each go around in a circle and talk about our "high lights and low lights" of the day.  We each share a good thing about our day "high light" and one thing that wasn't so good about our day "low light."  Most days it doesn't have anything to do with cancer, although my low light is usually "Mommy's cough."   It helps all of usfocus on the many blessings we have despite the hell we are going through.  It helps the kids think of the "good" in their life as well as acknowledging the bad.  Additionally, the times when they want to say something about the cancer, they do and we talk about it for a few minutes and then move on.  My 3 and 4 year old really have no concept, they just know mommy goes to the doctor a lot because of her cough.  

As far as dealing with the actual diagnosis, we have been open with the kids, but not frightening.  I really think they get the sense of how to deal with all of this from us as parents.  I express my fear, but then follow up with confidence and gratitude that I am being treated with the best doctors.  I often bury my fear, trying to give a sense of security for my kids, comforting them and giving them hope, they don't need to face fear.  I don't know what the future brings so why not focus on the good for them!

Finally, I went to a counselor at the Mayo Clinic who specialized in helping people with cancer.    I was seeking advice on how to deal with this with all of this and my kids if I die.  She said something that really hit me.   She said, "Whether you live or die, the process of dealing with this disease is traumatic for your kids."   She also advised that I have them go to therapy to help them deal with all the stress.  We haven't done that yet, but might do so in the future.

I don't know if any of this is helpful.  I am sorry you are going through this.  It is so hard.

Allyson

I am sorry that you are having such a hard time.  I read your posts and I have compassion for you.   It is clear you are under stress and suffering. Many of us here know the difficulty of facing dealth.  However, as you describe in your post, that you just know you are going to die, the mole is changing and it must be melanoma, tells me that you need to get some help.  Your fears are not based on reason.  I have stage IV melanoma and the orignal mole wasn't black, wasn't big, and didn't fit any of the profiles.  Many of my moles, that look JUST LIKE YOURS, have been biopsied and NONE of them came back abnormal.  You ABSOLUTLEY can not tell if a mole is Melanoma except by biopsy.  Period.  

 I am not sure if my post will help you, I hope it will.  However, it seems you mind is made up, despite the fact that many of us have actually traveled down the road of Melanoma and are telling you otherwise.  I am glad you are seeing a doctor.  I truly hope you can find some peace.  

Allyson

I am sorry that you are having such a hard time.  I read your posts and I have compassion for you.   It is clear you are under stress and suffering. Many of us here know the difficulty of facing dealth.  However, as you describe in your post, that you just know you are going to die, the mole is changing and it must be melanoma, tells me that you need to get some help.  Your fears are not based on reason.  I have stage IV melanoma and the orignal mole wasn't black, wasn't big, and didn't fit any of the profiles.  Many of my moles, that look JUST LIKE YOURS, have been biopsied and NONE of them came back abnormal.  You ABSOLUTLEY can not tell if a mole is Melanoma except by biopsy.  Period.  

 I am not sure if my post will help you, I hope it will.  However, it seems you mind is made up, despite the fact that many of us have actually traveled down the road of Melanoma and are telling you otherwise.  I am glad you are seeing a doctor.  I truly hope you can find some peace.  

Allyson

I am sorry that you are having such a hard time.  I read your posts and I have compassion for you.   It is clear you are under stress and suffering. Many of us here know the difficulty of facing dealth.  However, as you describe in your post, that you just know you are going to die, the mole is changing and it must be melanoma, tells me that you need to get some help.  Your fears are not based on reason.  I have stage IV melanoma and the orignal mole wasn't black, wasn't big, and didn't fit any of the profiles.  Many of my moles, that look JUST LIKE YOURS, have been biopsied and NONE of them came back abnormal.  You ABSOLUTLEY can not tell if a mole is Melanoma except by biopsy.  Period.  

 I am not sure if my post will help you, I hope it will.  However, it seems you mind is made up, despite the fact that many of us have actually traveled down the road of Melanoma and are telling you otherwise.  I am glad you are seeing a doctor.  I truly hope you can find some peace.  

Allyson

So glad all went well.  When they were putting the head frame on me I felt like an alien.  I struggled with speaking for a few days, I stuttered really badly, but then all came back in about a week.   Also, my scalp went numb for about a month and some parts still are numb, 6 months out.  They told me it was a rare side effect, hopefully you don't have it too!  It feels so weird to brush my hair.  

I am thrilled they didn't find another tumor.  In my follow up MRI my two tumors had shrunk almost completely.  It works!

Allyson

So glad all went well.  When they were putting the head frame on me I felt like an alien.  I struggled with speaking for a few days, I stuttered really badly, but then all came back in about a week.   Also, my scalp went numb for about a month and some parts still are numb, 6 months out.  They told me it was a rare side effect, hopefully you don't have it too!  It feels so weird to brush my hair.  

I am thrilled they didn't find another tumor.  In my follow up MRI my two tumors had shrunk almost completely.  It works!

Allyson

So glad all went well.  When they were putting the head frame on me I felt like an alien.  I struggled with speaking for a few days, I stuttered really badly, but then all came back in about a week.   Also, my scalp went numb for about a month and some parts still are numb, 6 months out.  They told me it was a rare side effect, hopefully you don't have it too!  It feels so weird to brush my hair.  

I am thrilled they didn't find another tumor.  In my follow up MRI my two tumors had shrunk almost completely.  It works!

Allyson

Yes, I have had it.  It started after infusion number 5.  Mostly in my hands and feet.  Hurts all of the time, but not so much that I can't do things.  Doctor is considering steriods now.  

Allyson

Yes, I have had it.  It started after infusion number 5.  Mostly in my hands and feet.  Hurts all of the time, but not so much that I can't do things.  Doctor is considering steriods now.  

Allyson

Yes, I have had it.  It started after infusion number 5.  Mostly in my hands and feet.  Hurts all of the time, but not so much that I can't do things.  Doctor is considering steriods now.  

Allyson