Sarah's MRI

alutiiqmom

Hello friends:
It is with a broken heart that I let you all know that the cancer has come back. First, her speech was slurred, then early this morning, I observed her face drooping. I knew we have to go. They did the MRI this morning instead of Tuesday. The scan showed a new tumor on the right side and possibly two smaller ones.
My heart is broken. I actually feel like I am going crazy. I am right on the brink.
We fedexed two MRI discs. One to Seattle and one to UCSF. What to do? I do not know. I must pray and pray for guidance. Please pray with me. I refuse to give up my faith. I know God is with us and he is with Sarah. God made Sarah.
I will let you all know what we do.
God's blessings to each and every one of you.

Edna and Sarah

sadinholland

I am so sorry to hear the
I am so sorry to hear the news! I will be praying for Sarah and your family. I will pray for guidance and healing. God Bless!

cindysuetoyou

standing in prayer with you
Dear Edna,

I'm so very sorry and sick at heart to hear this about Sarah's MRI. I understand and feel your anguish. It rips my heart for you. Please stay strong....I know what you mean about feeling like you are going crazy. I felt like that several times but I told myself that I couldn't. There was too much at stake for me to give in to my emotions. Sarah needs you and is counting on you to be strong, strong for you and strong for her. Please forgive me if I am putting pressure on you, but thinking like this helped me to keep my sanity.

David and I (and a lot of other family members) all got tattoos that said, "Trusting in God." When we would get bad news (and we got really bad news many times) I would say, "David, now is not the time to stop trusting in God." That became our saying. It strengthened my resolve, like yours, not to give up my faith.

Edna, I am praying very hard for you and for Sarah. I'm praying specifically that UCSF or Seattle will have some good treatment options to suggest to you and Sarah after their tumor board meets. I believe that they will have some viable options--and I pray that you will be able to decide which one to go with and that you will feel a peace from God about the plan you choose.

I'm also praying for strength and peace for you and Sarah and your whole family.

Love and blessings, always,
Cindy

I_Promise

cindysuetoyou said:

standing in prayer with you
Dear Edna,

I'm so very sorry and sick at heart to hear this about Sarah's MRI. I understand and feel your anguish. It rips my heart for you. Please stay strong....I know what you mean about feeling like you are going crazy. I felt like that several times but I told myself that I couldn't. There was too much at stake for me to give in to my emotions. Sarah needs you and is counting on you to be strong, strong for you and strong for her. Please forgive me if I am putting pressure on you, but thinking like this helped me to keep my sanity.

David and I (and a lot of other family members) all got tattoos that said, "Trusting in God." When we would get bad news (and we got really bad news many times) I would say, "David, now is not the time to stop trusting in God." That became our saying. It strengthened my resolve, like yours, not to give up my faith.

Edna, I am praying very hard for you and for Sarah. I'm praying specifically that UCSF or Seattle will have some good treatment options to suggest to you and Sarah after their tumor board meets. I believe that they will have some viable options--and I pray that you will be able to decide which one to go with and that you will feel a peace from God about the plan you choose.

I'm also praying for strength and peace for you and Sarah and your whole family.

Love and blessings, always,
Cindy

Dear Edna,
It is with a heavy heart that I read your message.

Be as strong as you can in front of your daughter but allow yourself to breakdown when she is not there. I hope that you can surround yourself with people who love you and Sarah.

You choose 2 outstanding facilities to send your MRIs.

Is she on any treatment now? Did her current neuro-oncologist add anything else to regimen? Steroids?
Are all the tumors on the same side of her brain? The reason I ask is that the answer to these questions can influence what kind of new treatment she will be getting or what clinical trial she will be eligible for.

I will be thinking of Sarah. She is bright, young and a fighter. I will hope for an another remission.

with Love

Julia

BenLenBo

Prayers for your beautiful
Prayers for your beautiful daughter to receive the treatment plan needed to end the growth of
tumors. May you find the right medical facility to answer all your questions, so you all can
make the right choices in this battle for life. May the Lord hold you all in the palm of his
hand to offer courage, comfort and the ability to FIGHT, FIGHT, FIGHT.

It is so hard to decide where to go, when every area of the country has various treatment options, for brain tumors. Perfect world would be if everybody was on the same page, but that will not happen as people, tumors and treatments are as different as night and day. I belong to the National Brain Tumor Society, they have articles, advise and hope for all patients, maybe one of these articles would beable to answer your questions.

As a parent, it is so hard to watch our children fight for life, it seems so unfair. When Benjamin was diagnoised, I felt like the bottom fell out of my world. We are now at that point as a family, we are so grateful for the blessings we have been given. Benjamin is free of cancer, considered a
survivor, doctor's have called him boring, and don't expect to see a recurrance ever at this point in his life, Thank God!!!!! May your daughter Sarah, be called boring, so she can celebrate
her life as a survivor!!!!!

Stay strong Edna, it's a tough one!

God Bless and Take Care!

Carol

alutiiqmom

cindysuetoyou said:

standing in prayer with you
Dear Edna,

I'm so very sorry and sick at heart to hear this about Sarah's MRI. I understand and feel your anguish. It rips my heart for you. Please stay strong....I know what you mean about feeling like you are going crazy. I felt like that several times but I told myself that I couldn't. There was too much at stake for me to give in to my emotions. Sarah needs you and is counting on you to be strong, strong for you and strong for her. Please forgive me if I am putting pressure on you, but thinking like this helped me to keep my sanity.

David and I (and a lot of other family members) all got tattoos that said, "Trusting in God." When we would get bad news (and we got really bad news many times) I would say, "David, now is not the time to stop trusting in God." That became our saying. It strengthened my resolve, like yours, not to give up my faith.

Edna, I am praying very hard for you and for Sarah. I'm praying specifically that UCSF or Seattle will have some good treatment options to suggest to you and Sarah after their tumor board meets. I believe that they will have some viable options--and I pray that you will be able to decide which one to go with and that you will feel a peace from God about the plan you choose.

I'm also praying for strength and peace for you and Sarah and your whole family.

Love and blessings, always,
Cindy

Thank you cindy
Hi Cindy:
Your words mean so much to me. I do not feel like you are being too tough. Keep praying! I will post when we find out what we are doing. Thank you so much for the support. God Bless you!

Edna and Sarah

alutiiqmom

I_Promise said:

Dear Edna,
It is with a heavy heart that I read your message.

Be as strong as you can in front of your daughter but allow yourself to breakdown when she is not there. I hope that you can surround yourself with people who love you and Sarah.

You choose 2 outstanding facilities to send your MRIs.

Is she on any treatment now? Did her current neuro-oncologist add anything else to regimen? Steroids?
Are all the tumors on the same side of her brain? The reason I ask is that the answer to these questions can influence what kind of new treatment she will be getting or what clinical trial she will be eligible for.

I will be thinking of Sarah. She is bright, young and a fighter. I will hope for an another remission.

with Love

Julia

Thank you Julia
Hi Julia:

thank you for your support. They put Sarah on Decradon, 8mg. 2x a day. We are still waiting to hear what our options are. It sounds like surgically they may be too deep. Our Alaska oncologoist is thinking Gamma Knife, which would involve going outside of Alaska. He is helping us find a facility that will do the Gamma Knife and then start tracking her for a potential trial.

What do you think? We are exhausted from the stess. Sarah is exhauste from the stress and the medicine. She continues to take her 500mg. of Kepra 2x a day. I may call Dr. Liu tomorrow. Today, our Alaska doctor was suppposed to call Dr. Friedman at Duke. Dr. Friedman gave me the name of Dr. Michel Prados, who is at UCSF, he is supposed to be on the same level as Dr. Friedman, but on the West coast.

Thank you for your support. I remain in faith. I am trying to spark that fighting spirit in Sarah. I think she feels like she was punched in the stomach. I feel like we were blind sighted.
I send God's blessings to you and your sister.

Edna and Sarah

alutiiqmom

BenLenBo said:

Prayers for your beautiful
Prayers for your beautiful daughter to receive the treatment plan needed to end the growth of
tumors. May you find the right medical facility to answer all your questions, so you all can
make the right choices in this battle for life. May the Lord hold you all in the palm of his
hand to offer courage, comfort and the ability to FIGHT, FIGHT, FIGHT.

It is so hard to decide where to go, when every area of the country has various treatment options, for brain tumors. Perfect world would be if everybody was on the same page, but that will not happen as people, tumors and treatments are as different as night and day. I belong to the National Brain Tumor Society, they have articles, advise and hope for all patients, maybe one of these articles would beable to answer your questions.

As a parent, it is so hard to watch our children fight for life, it seems so unfair. When Benjamin was diagnoised, I felt like the bottom fell out of my world. We are now at that point as a family, we are so grateful for the blessings we have been given. Benjamin is free of cancer, considered a
survivor, doctor's have called him boring, and don't expect to see a recurrance ever at this point in his life, Thank God!!!!! May your daughter Sarah, be called boring, so she can celebrate
her life as a survivor!!!!!

Stay strong Edna, it's a tough one!

God Bless and Take Care!

Carol

Thank you Carol
Hi! Carol:

Thank you for your words of encouragement. Fight! Fight! We will. I just love my daughter so much, sometimes, I feel physically ill.
I should check the National Brain Tumor Society - it has been a while. I am not a member, maybe I should join. I am glad to hear that Ben is doing well and has a good prognosis.
What a blessing.

God Bless you and Ben Carol.

Love, Edna and Sarah

PBJ Austin

alutiiqmom said:

Thank you Carol
Hi! Carol:

Thank you for your words of encouragement. Fight! Fight! We will. I just love my daughter so much, sometimes, I feel physically ill.
I should check the National Brain Tumor Society - it has been a while. I am not a member, maybe I should join. I am glad to hear that Ben is doing well and has a good prognosis.
What a blessing.

God Bless you and Ben Carol.

Love, Edna and Sarah

So very sorry
Dear Edna and Sarah,

When people on this board go into remission I share the joy, but when things go the wrong way I also feel the pain. My kid sister is currently in remission and it is my nightmare that the day will come when her cancer returns. According to the doctors it is only a matter of time but I refuse to believe that. So when I read about your Sarah my heart breaks for you.

I will pray every day for Sarah's healing, as I pray for everyone on this board.

Pam

I_Promise

PBJ Austin said:

So very sorry
Dear Edna and Sarah,

When people on this board go into remission I share the joy, but when things go the wrong way I also feel the pain. My kid sister is currently in remission and it is my nightmare that the day will come when her cancer returns. According to the doctors it is only a matter of time but I refuse to believe that. So when I read about your Sarah my heart breaks for you.

I will pray every day for Sarah's healing, as I pray for everyone on this board.

Pam

Plan of attack
Dear Edna,

With the steroids, Sarah should start having some resolution/improvement of her symptoms. When my sister had some swelling causing a facial drop and her left arm weakness within 24 hours it improved with decadron. By 72 hours she was playing the piano again. Steroids buy you time.

These are a few humble ideas: (look on clinicaltrial.gov for more information).

1) If she can have surgery, then she needs to have it at a center that will create a vaccine from the tumor sample. This is one of the biggest regrets that I have regarding my sister. There are several brain tumor centers doing it.

2) If it is inoperable, then yes gamma knife is an option. Also less known is MRI guided laser heat therapy: http://visualaseinc.com/
she might be eligible for either or even both.

Let me know what her neuro-oncologists will suggest. I know that right now you feel overwhelmed and desperate for a magic solution. I think we all have been there. Weight the pro and cons of the options suggested to you by the different neuro-oncologists and neurosurgeons.

Please post about what is going on with Sarah. I want her to beat this monster.

Love

Julia

sadinholland

I_Promise said:

Plan of attack
Dear Edna,

With the steroids, Sarah should start having some resolution/improvement of her symptoms. When my sister had some swelling causing a facial drop and her left arm weakness within 24 hours it improved with decadron. By 72 hours she was playing the piano again. Steroids buy you time.

These are a few humble ideas: (look on clinicaltrial.gov for more information).

1) If she can have surgery, then she needs to have it at a center that will create a vaccine from the tumor sample. This is one of the biggest regrets that I have regarding my sister. There are several brain tumor centers doing it.

2) If it is inoperable, then yes gamma knife is an option. Also less known is MRI guided laser heat therapy: http://visualaseinc.com/
she might be eligible for either or even both.

Let me know what her neuro-oncologists will suggest. I know that right now you feel overwhelmed and desperate for a magic solution. I think we all have been there. Weight the pro and cons of the options suggested to you by the different neuro-oncologists and neurosurgeons.

Please post about what is going on with Sarah. I want her to beat this monster.

Love

Julia

Edna,
When the tumor board saw something on my husband's scan at the Cleveland Clinic they said gamma knife would have possibly been the next step, so maybe ask your NO about the Cleveland Clinic for treatment for Sarah. We have been pleased with them and their treatment for my husband. I will be praying!

I_Promise

sadinholland said:

Edna,
When the tumor board saw something on my husband's scan at the Cleveland Clinic they said gamma knife would have possibly been the next step, so maybe ask your NO about the Cleveland Clinic for treatment for Sarah. We have been pleased with them and their treatment for my husband. I will be praying!

Hello Edna
I have been thinking about you and Sarah. Any news yet about her treatment plan? Did some of her symptoms diminished with the steroids?

Love Julia

ravirajagopalan

alutiiqmom said:

Thank you Carol
Hi! Carol:

Thank you for your words of encouragement. Fight! Fight! We will. I just love my daughter so much, sometimes, I feel physically ill.
I should check the National Brain Tumor Society - it has been a while. I am not a member, maybe I should join. I am glad to hear that Ben is doing well and has a good prognosis.
What a blessing.

God Bless you and Ben Carol.

Love, Edna and Sarah

Options
Hi Edna, UCSF is a great facility with excellent surgeons. Hopefully they will be able to help.

Please also consider vaccine trials if the tumor is respectable. Two very good facilities on the West Coast are UCLA (Dr. Linda Liau) and Cedar Sinai (dr. Keith Black or Dr. John Yu). UCLA has an all organic Tcell trial open for recurrent GBMs and Cedar Sinai has a vaccine trial.

Good luck,
Ravi

Tubbs

ravirajagopalan said:

Options
Hi Edna, UCSF is a great facility with excellent surgeons. Hopefully they will be able to help.

Please also consider vaccine trials if the tumor is respectable. Two very good facilities on the West Coast are UCLA (Dr. Linda Liau) and Cedar Sinai (dr. Keith Black or Dr. John Yu). UCLA has an all organic Tcell trial open for recurrent GBMs and Cedar Sinai has a vaccine trial.

Good luck,
Ravi

Not to confuse with too much
Not to confuse with too much info, but Dr. Mirhadi and Dr. Yu at Cedars worked on my wife's case. They team up for gamma knife procedures and it felt like we were getting two big-time doctors at the same time, which was a bit of relief, knowing there were two opinions working on my wife's case for one procedure.

alutiiqmom

I_Promise said:

Hello Edna
I have been thinking about you and Sarah. Any news yet about her treatment plan? Did some of her symptoms diminished with the steroids?

Love Julia

More bad news
Hi Julia

It is very rough. Sarah's reoccurrence does not make her a gamma knife candidate because it is to spread out and there is healthy tissue mixed in with bad. UCSF has not told us if they have a trial for Sarah yet.
We should go to UCLA!
We are in Seattle and today we heard possible 3 weeks of radiation with avastin. Followed by the Novacure device? I do not think Sarah will wear that because she has to cut her hair off. It looks like that anyway. There is another trial at the U of W that involves an old chemo drug primarily used for leukemia but they know it ill make Sarah very sick. She will not do that one. UCSF was talking about Temodar trial and U of W says that will not work for her. So scary and confusing.

Do you know the at T cell trial criteria ?
I am sick with worry. They tell us it is not curable and we are just buying time.
God bless you

Edna

I_Promise

Tubbs said:

Not to confuse with too much
Not to confuse with too much info, but Dr. Mirhadi and Dr. Yu at Cedars worked on my wife's case. They team up for gamma knife procedures and it felt like we were getting two big-time doctors at the same time, which was a bit of relief, knowing there were two opinions working on my wife's case for one procedure.

Dr. Liau
Dear Edna,

For the allo Tcell trial, I believe that you need another brain surgery. At least to put a reservoir to deliver the drug directly into the brain.

http://www.clinicaltrial.gov/ct2/show/NCT01144247?term=liau+glioma+t+cells&rank=1

Dr. Liau has also other clinical trials going on.

I cannot imagine what you are going through. Stay as strong as you can for your daughter. I can research more clinical trials but I need information: Is the recurrence in only one spot? Where is is? One side of her brain only or involving both hemisphere?

They said no gamma knife. What about heat laser therapy? The cleveland clinic does it I believe. What about any gene therapy clinical trial, like using a virus... I know there is one at Duke.

I know you must feel overwhelmed and terrified. It rips my heart out that your providers are talking about only buying time. I care very much about your daughter and I still hope she will make through this recurrence.

Julia

I_Promise

I_Promise said:

Dr. Liau
Dear Edna,

For the allo Tcell trial, I believe that you need another brain surgery. At least to put a reservoir to deliver the drug directly into the brain.

http://www.clinicaltrial.gov/ct2/show/NCT01144247?term=liau+glioma+t+cells&rank=1

Dr. Liau has also other clinical trials going on.

I cannot imagine what you are going through. Stay as strong as you can for your daughter. I can research more clinical trials but I need information: Is the recurrence in only one spot? Where is is? One side of her brain only or involving both hemisphere?

They said no gamma knife. What about heat laser therapy? The cleveland clinic does it I believe. What about any gene therapy clinical trial, like using a virus... I know there is one at Duke.

I know you must feel overwhelmed and terrified. It rips my heart out that your providers are talking about only buying time. I care very much about your daughter and I still hope she will make through this recurrence.

Julia

age
I forgot to ask if Sarah is 18 now because some of the clinical trials will divide adults and children.

The gene therapy trial at Duke uses a polio virus:
http://www.clinicaltrial.gov/ct2/show/NCT01491893?term=virus+duke+glioma&rank=1

love,

Julia

cindysuetoyou

alutiiqmom said:

More bad news
Hi Julia

It is very rough. Sarah's reoccurrence does not make her a gamma knife candidate because it is to spread out and there is healthy tissue mixed in with bad. UCSF has not told us if they have a trial for Sarah yet.
We should go to UCLA!
We are in Seattle and today we heard possible 3 weeks of radiation with avastin. Followed by the Novacure device? I do not think Sarah will wear that because she has to cut her hair off. It looks like that anyway. There is another trial at the U of W that involves an old chemo drug primarily used for leukemia but they know it ill make Sarah very sick. She will not do that one. UCSF was talking about Temodar trial and U of W says that will not work for her. So scary and confusing.

Do you know the at T cell trial criteria ?
I am sick with worry. They tell us it is not curable and we are just buying time.
God bless you

Edna

praying
Dear Edna,

I've been checking all the time for posts about Sarah. Thank you for letting us know what is going on.

I feel pain in my heart and such a sick feeling when I read your words about things being rough. I HATE what you and Sarah are going through. I feel helpless when I try to think of what to write to you. I pray for you all the time, for healing for Sarah and strength and peace for both of you and your family too. I think that's the most important thing I can do for you.

Anyone I know who and almost everyone who I've communicated with regarding brain tumors has had their doctors tell them that "it's not curable and we are just buying time." I HATED hearing that about David. At first it made me limp and almost paralyzed with fear (amazing to think of the power of the spoken word), but after a while, I became angry and mentally I stood up and started fighting back against how those words made me feel. I told myself that we could live with "not curable" and our goal would be to manage it and control it. I told myself that there are a lot of non-curable conditions....much, much more minor ones, like diabetes, asthma, etc that were not curable but people fought back and didn't let those things take over their life. I know that brain tumors are in another realm of seriousness, but it helped me to think like this and fight instead of living in terror. Also, as far as buying time.....I told myself we are all "buying time." I know it's not the same as someone who is fighting brain cancer but I had to think like this so I wouldn't go under. And every day that you "buy" is another day closer to a new treatment option or even maybe a cure. Every day that you "buy" is a day in your favor.

I know it's not much, Edna, but I long to help you in even a small way. All I can think of to do is try to share from my story and hope that I can give you a little strength. I'm so glad that Julia is on this website and researching trials and giving you suggestions. And of course I will continue to pray every day, very hard, for you and Sarah.

Love, blessings, peace and strength to you,
Cindy

mighty6

alutiiqmom said:

More bad news
Hi Julia

It is very rough. Sarah's reoccurrence does not make her a gamma knife candidate because it is to spread out and there is healthy tissue mixed in with bad. UCSF has not told us if they have a trial for Sarah yet.
We should go to UCLA!
We are in Seattle and today we heard possible 3 weeks of radiation with avastin. Followed by the Novacure device? I do not think Sarah will wear that because she has to cut her hair off. It looks like that anyway. There is another trial at the U of W that involves an old chemo drug primarily used for leukemia but they know it ill make Sarah very sick. She will not do that one. UCSF was talking about Temodar trial and U of W says that will not work for her. So scary and confusing.

Do you know the at T cell trial criteria ?
I am sick with worry. They tell us it is not curable and we are just buying time.
God bless you

Edna

tocagen
Dear Edna,

Have you thought of the gene therapy? my friend's mom is currently on Tocagen. She has recurrent GBM. it is been almost seven months since her tumor recurrence! She had some up and downs, but mostly stable so far:

http://www.clinicaltrial.gov/ct2/show/NCT01156584?term=tocagen&rank=2


She has tried Novacure for a few while, but felt it is very inconvenient. But It does no harm, maybe consider that a back-up option? or even have both?

My best wishes to you and Sarah.

-- Jane

alutiiqmom

I_Promise said:

age
I forgot to ask if Sarah is 18 now because some of the clinical trials will divide adults and children.

The gene therapy trial at Duke uses a polio virus:
http://www.clinicaltrial.gov/ct2/show/NCT01491893?term=virus+duke+glioma&rank=1

love,

Julia

Sarah is 19
Hi julia

Thank you for your help and kind words. Sarah's reoccurrence is on the right side. They think it cannot be surgically removed because it is deep. Where the tumor begins, it reaches down in her brain. She can have re-radiation for 3 weeks or 15 x. We talked about using avastin or tarceva.
They are running a gene test to see if Sarah has the BRAF mutation. They are also running a protein test for EGFR.

In 2011 most of her radiation was on the left side. There is only a small overlap on the right. Seattle recommends that Sarah do the radiation with the Tarceva. Since we used Avastin before they want to try something different.

U of W offered her the radiation with whatever chemo Seattle gives Sarah and they are offering her the Novacure.

We arrived in San Francisco today. Tomorrow we go to UCSF to hear what they have. We should call UCLA. Our Alaska oncologist called Dr.friedman at Duke before we left and he did not have anything for Sarah. Maybe she does not meet the criteria ? I wonder I'd I should have called him myself.

Thank you and God Bless you .

Edna and Sarah

alutiiqmom

I_Promise said:

age
I forgot to ask if Sarah is 18 now because some of the clinical trials will divide adults and children.

The gene therapy trial at Duke uses a polio virus:
http://www.clinicaltrial.gov/ct2/show/NCT01491893?term=virus+duke+glioma&rank=1

love,

Julia

Sarah is 19
Hi julia

Thank you for your help and kind words. Sarah's reoccurrence is on the right side. They think it cannot be surgically removed because it is deep. Where the tumor begins, it reaches down in her brain. She can have re-radiation for 3 weeks or 15 x. We talked about using avastin or tarceva.
They are running a gene test to see if Sarah has the BRAF mutation. They are also running a protein test for EGFR.

In 2011 most of her radiation was on the left side. There is only a small overlap on the right. Seattle recommends that Sarah do the radiation with the Tarceva. Since we used Avastin before they want to try something different.

U of W offered her the radiation with whatever chemo Seattle gives Sarah and they are offering her the Novacure.

We arrived in San Francisco today. Tomorrow we go to UCSF to hear what they have. We should call UCLA. Our Alaska oncologist called Dr.friedman at Duke before we left and he did not have anything for Sarah. Maybe she does not meet the criteria ? I wonder I'd I should have called him myself.

Thank you and God Bless you .

Edna and Sarah