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Update: The Gambler ups the stakes – Stage 4

Forums Cutaneous Melanoma Community Update: The Gambler ups the stakes – Stage 4

  • Post
    lovingwifedeb
    Participant

    I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

    I was really hoping I wouldn't have to come back here writing, exposing my feelings for all to see. But if not here then where? It's not the same in the other places I've been, the support is big here, so I'm back asking for your generous feedback for the one person in my life who is changing before my very eyes.

    It has been only 6 months since melanoma has taken over our lives, to some that is a drop in the bucket. To some of you, your experience is vast, the years long and painful. I will not be able to compare my story to yours and I will not try. I write from the heart only, I am the caregiver, the wife who watches her husband slowly change from the person she married.

    Father's Day – Stage 3B

    July 22nd – Surgery

    Choice – No treatment/Nutrition Based

    5 Months – Happy New Years – New Tests – Stage 4 – Brain Cancer

    No other "hot spots" in body found

     

    My husband's melanoma has crossed the lymph system into the blood system into his brain, 6 short months from diagnosis… now what?

    Appointment with the neurologist on Monday.

    Absolutely Terrified.

     

    Deb

    lovingwife to Bob, stage 4

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  • Replies
      akls
      Participant

      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

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      akls
      Participant

      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

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      lhaley
      Participant

      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

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      lhaley
      Participant

      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

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      NicOz
      Participant

      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

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      NicOz
      Participant

      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

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      washoegal
      Participant

      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

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      washoegal
      Participant

      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

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      JakeinNY
      Participant

      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.

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      JakeinNY
      Participant

      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.

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      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

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      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

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        Vermont_Donna
        Participant

        Dear Deb,

          NEVER lose HOPE! That is the thing that keep us going….always new treatments, always things to try, just keep up a healthy lifestyle, optimize the immune system as previously said (I should talk, need to do this more), and seek treatment. I have read good success stories on this forum about brain mets over the last 4 years….

        Vermont_Donna

        stage 3a

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        Vermont_Donna
        Participant

        Dear Deb,

          NEVER lose HOPE! That is the thing that keep us going….always new treatments, always things to try, just keep up a healthy lifestyle, optimize the immune system as previously said (I should talk, need to do this more), and seek treatment. I have read good success stories on this forum about brain mets over the last 4 years….

        Vermont_Donna

        stage 3a

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      dian in spokane
      Participant

      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

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      dian in spokane
      Participant

      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

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      jim Breitfeller
      Participant

      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

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      jim Breitfeller
      Participant

      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

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      Sherron
      Participant

      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

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      Sherron
      Participant

      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

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      ockelly
      Participant

      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

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      ockelly
      Participant

      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

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      JuleFL
      Participant
      Hi Deb,
      I’m sorry to hear of this recent turn of events and hope that Bob has success in eliminating the brain mets. Prayers going out to you and Bob.

      Jule

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      JuleFL
      Participant
      Hi Deb,
      I’m sorry to hear of this recent turn of events and hope that Bob has success in eliminating the brain mets. Prayers going out to you and Bob.

      Jule

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      lovingwifedeb
      Participant

      Thank you all for responding, my heart is comforted…

      As always I think with my left brain first, not always facts in line but emotions count with me and yes, it does get me in trouble sometimes or at least down the more difficult path… 1 tumor as far as we know before meeting. How large? Not sure but big enough to worry about, and affecting speech slightly.

      Besides that I've had all night to worry more and think before this meeting today, to get madder and madder at my husband's situation (is madder even a word?)… the reason being at stage 3 his options for treatment that were presented to us were so limited. His doctors considered him cancer free because the tumor was surgically removed and nothing else showed up on his scans. But I learned through much reading on my own that NED does not mean the cancer cells are NOT continuing to roam around the body. The melanoma cells are waiting in search of weakness, looking for another place to land, it just means they are too small for any machinery to locate. Melanoma is another kind of animal I am told by his doctors, different from any other cancer out there. Yes, I AM MAD. The way the clinical trials are ran today with new medications that could help save lives at earlier stages mean nothing if the clinitions can not measure (stages without tumors) their success. Damn their rules.

      Oh… I have learned too much.

      I will be thinking of Bill58 today in his honor, with my husband in this meeting no matter what is said, no matter how hard it is to hear. Hopefully I can get The Gambler to post his own results with this board and to ask for your guidence on his new path.

      Deb

      lovingwife to Bob, stage 4

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        LynnLuc
        Participant

        I am also stage 4 NED and am fully aware of those microcells floating around waiting for  a place to happen. I always pray for everyone with melanoma because it will take a miracle for eachof us!

        Praying for Bob abd you!

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        LynnLuc
        Participant

        I am also stage 4 NED and am fully aware of those microcells floating around waiting for  a place to happen. I always pray for everyone with melanoma because it will take a miracle for eachof us!

        Praying for Bob abd you!

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      lovingwifedeb
      Participant

      Thank you all for responding, my heart is comforted…

      As always I think with my left brain first, not always facts in line but emotions count with me and yes, it does get me in trouble sometimes or at least down the more difficult path… 1 tumor as far as we know before meeting. How large? Not sure but big enough to worry about, and affecting speech slightly.

      Besides that I've had all night to worry more and think before this meeting today, to get madder and madder at my husband's situation (is madder even a word?)… the reason being at stage 3 his options for treatment that were presented to us were so limited. His doctors considered him cancer free because the tumor was surgically removed and nothing else showed up on his scans. But I learned through much reading on my own that NED does not mean the cancer cells are NOT continuing to roam around the body. The melanoma cells are waiting in search of weakness, looking for another place to land, it just means they are too small for any machinery to locate. Melanoma is another kind of animal I am told by his doctors, different from any other cancer out there. Yes, I AM MAD. The way the clinical trials are ran today with new medications that could help save lives at earlier stages mean nothing if the clinitions can not measure (stages without tumors) their success. Damn their rules.

      Oh… I have learned too much.

      I will be thinking of Bill58 today in his honor, with my husband in this meeting no matter what is said, no matter how hard it is to hear. Hopefully I can get The Gambler to post his own results with this board and to ask for your guidence on his new path.

      Deb

      lovingwife to Bob, stage 4

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      Sharyn
      Participant

      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 [email protected] 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  

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      Sharyn
      Participant

      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 [email protected] 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  

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