Update: The Gambler ups the stakes – Stage 4

Deb,

I just want you to know that I'm sorry about this news and I will be praying for you and Bob as you make your decision for treatment.  I remember your postings earlier and enjoyed your honest, heart-felt posts.  I have no experience with what you are dealing with, but I'm sure others will comment.  Just know that you are not alone. 

Amy S. in Michigan

Deb,

I just want you to know that I'm sorry about this news and I will be praying for you and Bob as you make your decision for treatment.  I remember your postings earlier and enjoyed your honest, heart-felt posts.  I have no experience with what you are dealing with, but I'm sure others will comment.  Just know that you are not alone. 

Amy S. in Michigan

Deb,

I am so sorry to hear this!  Was he having symptoms that he had a brain mri?  My Dr. only does brain MRI's when there are symptoms.

You didn't say if it was one tumor or more or the size, I know that determines the treatments. There have been those on the board that have had successful crainectomies and also SRS (I belive that's what it's called). If you don't get any replies from those who have had experience with this you might want to change your heading. 

Not how you wanted to start the New Years but gather your info and go in fighting!

Linda

Deb,

I am so sorry to hear this!  Was he having symptoms that he had a brain mri?  My Dr. only does brain MRI's when there are symptoms.

You didn't say if it was one tumor or more or the size, I know that determines the treatments. There have been those on the board that have had successful crainectomies and also SRS (I belive that's what it's called). If you don't get any replies from those who have had experience with this you might want to change your heading. 

Not how you wanted to start the New Years but gather your info and go in fighting!

Linda

Well $hit, Deb! This was not the news I was hoping for, for Bob and yourself *duh! Stating the bleeding obvious here!*. Linda is right though, it's hard to comment or give advice without knowing the number, size and location- Best to wait until the neuro talks with you both and makes his suggestions as to possible directions to head re: treatment.  All I can say is, I've done both SRS and had surgeries numerous time for my (20+) brain mets, and I'm still plodding along over 2.5 years since diagnosis (and probably 3 years since the symptoms began which probably indicated the first appearance of my brain mets) If you have anything specific re:SRS or craniotomies that you'd like to discuss, feel free to email or ask on here (though am fairly sporadic with visits to here).

Hoping for a good, straighforward and unambigious talk with the neuro, for you both. So sorry to hear your news, and terror seems like a normal reaction to the news, but you'll (hopefully) find that will lessen as your plan of attack is in place, and you feel like you've wrestled back a certain amount of control. If the neuro is not to your liking (or his/her treatment suggestions aren't) go for a second opinion. It's very important to be comfortable and confident in your care team

Nic xxx

Well $hit, Deb! This was not the news I was hoping for, for Bob and yourself *duh! Stating the bleeding obvious here!*. Linda is right though, it's hard to comment or give advice without knowing the number, size and location- Best to wait until the neuro talks with you both and makes his suggestions as to possible directions to head re: treatment.  All I can say is, I've done both SRS and had surgeries numerous time for my (20+) brain mets, and I'm still plodding along over 2.5 years since diagnosis (and probably 3 years since the symptoms began which probably indicated the first appearance of my brain mets) If you have anything specific re:SRS or craniotomies that you'd like to discuss, feel free to email or ask on here (though am fairly sporadic with visits to here).

Hoping for a good, straighforward and unambigious talk with the neuro, for you both. So sorry to hear your news, and terror seems like a normal reaction to the news, but you'll (hopefully) find that will lessen as your plan of attack is in place, and you feel like you've wrestled back a certain amount of control. If the neuro is not to your liking (or his/her treatment suggestions aren't) go for a second opinion. It's very important to be comfortable and confident in your care team

Nic xxx

Darling Deb,

Your posts have been so inspiring, I am so sorry to hear this devastating news.  We have a couple people hear that are well versed on what drugs that are being tested actually get past the "brain barrier", I hope the speak up and provide a list.  Please keep relying on the board to air out whatever fears, frustrations or anything else you might need.  I'm sure many will try their best to help.

Good Luck.

Mary

Stage 3

Darling Deb,

Your posts have been so inspiring, I am so sorry to hear this devastating news.  We have a couple people hear that are well versed on what drugs that are being tested actually get past the "brain barrier", I hope the speak up and provide a list.  Please keep relying on the board to air out whatever fears, frustrations or anything else you might need.  I'm sure many will try their best to help.

Good Luck.

Mary

Stage 3

Hi Deb.

Don't lose faith and keep him sticking to the lifestyle that will optimize the immune system.

Get a great surgeon (but don't lose too much time in selecting one…tough balance sometimes, I know).

I'm sure that there are many on here that went through the brain mets. and are doing OK.

I seem to remember that Mariel Hemingway's ex husband had this as well and he was doing very well after he changed his ways.

There is no guarantee that any one thing will work but I say "Do the best you can" and that means the best of the conventional medicine combined with the best ot the healthy mind and body medicine.

Best wishes.

Hi Deb.

Don't lose faith and keep him sticking to the lifestyle that will optimize the immune system.

Get a great surgeon (but don't lose too much time in selecting one…tough balance sometimes, I know).

I'm sure that there are many on here that went through the brain mets. and are doing OK.

I seem to remember that Mariel Hemingway's ex husband had this as well and he was doing very well after he changed his ways.

There is no guarantee that any one thing will work but I say "Do the best you can" and that means the best of the conventional medicine combined with the best ot the healthy mind and body medicine.

Best wishes.

HI Deb,

I am so sorry that things have progressed as they have.  Don't lose hope and keep up the faith and healthy lifestyle. 

From what I have seen on this board and learned from Dr. Spitler in California brain mets are treatable. 

I will keep you and your husband in my prayers and send you lots of positive energy. 

Many blessings to you,

Shelly

HI Deb,

I am so sorry that things have progressed as they have.  Don't lose hope and keep up the faith and healthy lifestyle. 

From what I have seen on this board and learned from Dr. Spitler in California brain mets are treatable. 

I will keep you and your husband in my prayers and send you lots of positive energy. 

Many blessings to you,

Shelly

Deb,

I'm sorry you've gotten such news. I hope the appointment with the Neuro goes great. We do know folks here who've been successfully treated for brain mets, but as Nic says..not knowing how many or size or anything makes it tough to comment.

I know we've had folks who've had one or two mets who had them surgically removed. Carole, for one, has been NED for many years after surgical removal. Many others have had some kind of gammaknife. Nic seems to be getting radiated every few months! So while it is certainly a bad diagnosis, there is still hope.

Good luck, and I wish you and your husband much strength for the coming times.

dian in spokane

Deb,

I'm sorry you've gotten such news. I hope the appointment with the Neuro goes great. We do know folks here who've been successfully treated for brain mets, but as Nic says..not knowing how many or size or anything makes it tough to comment.

I know we've had folks who've had one or two mets who had them surgically removed. Carole, for one, has been NED for many years after surgical removal. Many others have had some kind of gammaknife. Nic seems to be getting radiated every few months! So while it is certainly a bad diagnosis, there is still hope.

Good luck, and I wish you and your husband much strength for the coming times.

dian in spokane

Deb, I know of three therapies that may help.

1) Radiation

2) Ipililumab (Yervoy)

3) BRAF + MEK if  bob is Braf positive.

Take care

Jimmy B

Deb, I know of three therapies that may help.

1) Radiation

2) Ipililumab (Yervoy)

3) BRAF + MEK if  bob is Braf positive.

Take care

Jimmy B

Deb, I am so very sorry to hear this.   I am hoping and praying that the Doctors can get those tumors out of the brain quickly.  Jim had tumors all over his body, probably in the brain also..I could see places growing on his head.  His main area was that it mestazied to the intestines.  He could not eat, drink…He became so very weak and was in awful pain.  We had 4 very good years with no treatment, then boom in September, it attacked him like everything.

Be glad you are working with only 1 area.  I think they can zap them there.  I know I have read of this.  I don't come back much now.  Still waiting to write the last entry on Jim's profile.  Just have not been up to it.  I am hoping the best for you and your husband.

Take Care,

Sherron, wife to Jim FOREVER

Deb, I am so very sorry to hear this.   I am hoping and praying that the Doctors can get those tumors out of the brain quickly.  Jim had tumors all over his body, probably in the brain also..I could see places growing on his head.  His main area was that it mestazied to the intestines.  He could not eat, drink…He became so very weak and was in awful pain.  We had 4 very good years with no treatment, then boom in September, it attacked him like everything.

Be glad you are working with only 1 area.  I think they can zap them there.  I know I have read of this.  I don't come back much now.  Still waiting to write the last entry on Jim's profile.  Just have not been up to it.  I am hoping the best for you and your husband.

Take Care,

Sherron, wife to Jim FOREVER

Deb,

I lost a few messages I tried to send you on CSN but found you here…

I'm sorry doesn't express the sadness I'm feeling for you and Bob… there is a candle lit

for you at our church today.  Keep the faith.  I am so encouraged by the number of stage 4 patients 

contributing to these sites.  

I imagine you are researching clinical trials.  Recurrence certainly opens the doors to many treatment options.

Wondering if you would consider a second opinion with Dr Brendan Curti at Providence Cancer Center.  He is 

a research oncologist.  We had a bad experience at UW with a research onc who didn't seem to care about

my husband's outcome but just wanted another patient in her study.  Not the case with Dr Curti… he is a caring

clinician and would have information on clinical trials for you.  I know Dr Smith consults with him.

I looked at your family blog… nice to see the faces behind the story.  

I wont say I know your pain but it is certainly my biggest fear so I guess I can relate…

I'm nearby if you need to talk.

Thinking of you tomorrow.

Kelly

Deb,

I lost a few messages I tried to send you on CSN but found you here…

I'm sorry doesn't express the sadness I'm feeling for you and Bob… there is a candle lit

for you at our church today.  Keep the faith.  I am so encouraged by the number of stage 4 patients 

contributing to these sites.  

I imagine you are researching clinical trials.  Recurrence certainly opens the doors to many treatment options.

Wondering if you would consider a second opinion with Dr Brendan Curti at Providence Cancer Center.  He is 

a research oncologist.  We had a bad experience at UW with a research onc who didn't seem to care about

my husband's outcome but just wanted another patient in her study.  Not the case with Dr Curti… he is a caring

clinician and would have information on clinical trials for you.  I know Dr Smith consults with him.

I looked at your family blog… nice to see the faces behind the story.  

I wont say I know your pain but it is certainly my biggest fear so I guess I can relate…

I'm nearby if you need to talk.

Thinking of you tomorrow.

Kelly

Jule

Jule

Hi Deb,

I fully understand your worry and fear following a diagnosis of brain mets. Do you know how many there are? Where are are they? How big are they? I was diagnosed with brain mets in Oct 2009, (2 @ 5mm and 13@ 1mm), and I was devastated. Everything I read gave me a prognosis of 6 – 9 mos, very depressing, but I'm still here, doing wonderful. Several doctors advised me to do Whole Brain Radiation, but I had read horror stories of brain damage, so I resisted. Then one of my oncologists told me of an aneshtesiologist at his hospital who had WBR for melanoma brain mets a few years back, and he is now back to work and doing very well. So I relented, and agreed to 10 two-minute sessions of WBR (1 min on each side). The only "bad" thing that happened was that I lost my hair temporarily. It's grown back now.

In April, an MRI showed two more  5mm brain mets, none of the 1mm mets, and shrinkage in the first 2 that I originally had. So in May I had stereotactic radio surgery (gamma knife) on the 4 mets, and by September, I had either more shrinkage or stability on the 4 mets. I've been on Ipi since Sept, and I'm now waiting on the results of my 12 week scan. 

My point in all this is that even though the idea of brain mets is terribly frightening, it is not the end of the world. There are treatments out there, and they are quite effective. Don't dwell on statistics. They are from the past, and every day new treatments are being discovered. So don't look back — look forward.

I wish you all the best with your neurologist appointment. Let us know how things go.

Hugs

Sharyn, Stage IV  

Hi Deb,

I fully understand your worry and fear following a diagnosis of brain mets. Do you know how many there are? Where are are they? How big are they? I was diagnosed with brain mets in Oct 2009, (2 @ 5mm and 13@ 1mm), and I was devastated. Everything I read gave me a prognosis of 6 – 9 mos, very depressing, but I'm still here, doing wonderful. Several doctors advised me to do Whole Brain Radiation, but I had read horror stories of brain damage, so I resisted. Then one of my oncologists told me of an aneshtesiologist at his hospital who had WBR for melanoma brain mets a few years back, and he is now back to work and doing very well. So I relented, and agreed to 10 two-minute sessions of WBR (1 min on each side). The only "bad" thing that happened was that I lost my hair temporarily. It's grown back now.

In April, an MRI showed two more  5mm brain mets, none of the 1mm mets, and shrinkage in the first 2 that I originally had. So in May I had stereotactic radio surgery (gamma knife) on the 4 mets, and by September, I had either more shrinkage or stability on the 4 mets. I've been on Ipi since Sept, and I'm now waiting on the results of my 12 week scan. 

My point in all this is that even though the idea of brain mets is terribly frightening, it is not the end of the world. There are treatments out there, and they are quite effective. Don't dwell on statistics. They are from the past, and every day new treatments are being discovered. So don't look back — look forward.

I wish you all the best with your neurologist appointment. Let us know how things go.

Hugs

Sharyn, Stage IV