Update on Dad

unclaw2002
unclaw2002 Member Posts: 599
edited March 2014 in Esophageal Cancer #1
Hi All,

This has been a difficult post to write. In some ways I felt as if I didn’t write this post it wouldn’t be true, but I know in my heart it is time to get those big girl panties out as Moe would say and hold on tight for this part of the roller coaster.

Yesterday my Dad got his biopsy results back from Oschner in New Orleans and the spots on the PET scan are confirmed as esophageal cancer which has metastasized to the liver. he has 2 spots, one in each lobe, and there was no evidence of any cancer in the liver from the April Pet so this has grown pretty fast. The oncologist at Oschner told my dad that all they could offer as treatment in New Orleans was chemo and that he should (w/in the next five days) get a second opinion and seek treatment. She told him very unceremoniously that he was no longer Stage III but now Stage IV. She told him that since he had already been to Sloan he should probably go there find out what options he had. I can tell you her approach really floored my dad --- like so many on this site have experienced before in a room with a doctor who really seems ready to send you home to die.

The good news is that in anticipation of the biopsy results I had already made an appointment for my dad at Sloan for next Thursday. So he and my mom are flying up on Tuesday and we will see what happens and what the doctors at Sloan say. I have talked to my dad about the Therasphere treatments and the success of some on this board with the treatment. He said most of the literature speaks about using that treatment for colon cancer that has mets to the liver – but he is open to anything since he isn’t ready to check out yet. I also had a chance to speak with my mom and tell her that if there are treatments available other than chemo they will need to be done at Sloan.

Taking things one day at a time we will see what the docs say on Thursday and go from there. Right now the things I know for sure are my dad wants to fight, prayers make a difference and miracles can happen. And I am going to enjoy being able to spend some time with him and my mom and being able to take some of the load off of them, if only for the time they are here.

So I will ask for prayers from my CSN family for next week while my dad travels from New Orleans, luckily we got a direct flight, and for wisdom for the doctors as they consider and recommend treatment options. And if anyone here has any suggestions, questions I should pose to the doctor or any other insights or web links to read before next week that would be great.

Best,
Cindy

Comments

  • K_ann1015
    K_ann1015 Member Posts: 500
    #2
    Go for it CINDY!!!! Dad is lucky to have an advocate like you!
    OH Cindy---I am sorry, but know this is not the end of the story!

    I feel your pain-us daughters always have that lump in our throat---even when we trust in God--but you have prepared well-(used your talents :) )--you should not feel that you have not "done enough" because you are so far past most that are in this situation. You actually set the example of the "caregiver PRE-EMPTIVE STRIKE"!!!! I am very impressed! Take it one day at a time---it is so hard, but then again all the others on this site have never said "wow - that was a piece of cake!" SO, now for the NEW reality...day by day--enjoy your dad and others as never before no matter the circumstances. But you all have the fight in you and the docs don't always expect that. Some how how I know you are already doing this, bc I think you & I may be alot alike??? (nothing is going to take our dads down if we have a chance to make a difference....?)---but Cindy, don't share all your "knowledge" with him even though it scares you to death!!! Some of it is like "statistics"--that only apply to a certain portion of EC folks. He needs the "glass is half full" now. This stage may be harder than the initial diagnosis time.

    I am so impressed that you had already made the Sloan appt and your dad agreed! We all will be praying for you---please FB or intant messge me if you want/need---I will respond!
    I think this is the hardest thing we have had to do---as daughters...
    God BLess
    Kim
  • paul61
    paul61 Member Posts: 1,391 Member
    #3
    Praying for positive results at Sloan
    Cindy,

    I am sorry to hear about the results of your Dad’s tests. It seems there is a general trend among oncologists that once a patient is diagnosed as Stage IV they back away and suggest there is nothing additional they have to offer. I can understand the oncologist not wanting to raise “false hope” but clearly there is evidence of other Stage IV survivors moving ahead with treatment and continuing with their lives.

    I think as patients we have to keep in mind that only God knows when our time has come and only we decide when we are done fighting cancer. I think the worst thing about medical statistics is that they discourage people rather than encourage survivors. I think sometimes we give our doctors too much power. They are educated people who we hire to offer their best advice but in the end we have to remember that we are the consumer and we decide when it is time to seek other advice.

    I hope your Dad continues to stay strong and hears more positive options at Sloan.

    We will be praying for your Dad’s progress and positive outcomes.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0
    12/03/2010 Ivor Lewis
    2/8 – 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • cfight
    cfight Member Posts: 69
    #5
    Hi Cindy,
    My father was
    Hi Cindy,

    My father was diagnosed with Stage IV in December. He had total tumor reduction in his esophagus and the hot spot in his bone disappeared. He ended up having mets to the liver and started a second line of treatment in June (2 weeks out from being completely done). The good news is that we found out last week that he is responding to the second line and the tumors in the liver are shrinking.

    My advice is -- keep the faith!! I did bring up Therasphere to my dad's oncologist and he preferred to try a different chemo cocktail vs. thersphere. He wasn't opposed to the idea, he just thought there was something else that may work and it did.

    I will keep you, your father and family in my thoughts.

    Take care,
    Carolyn
  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
    #6
    cfight said:

    Hi Cindy,
    My father was
    Hi Cindy,

    My father was diagnosed with Stage IV in December. He had total tumor reduction in his esophagus and the hot spot in his bone disappeared. He ended up having mets to the liver and started a second line of treatment in June (2 weeks out from being completely done). The good news is that we found out last week that he is responding to the second line and the tumors in the liver are shrinking.

    My advice is -- keep the faith!! I did bring up Therasphere to my dad's oncologist and he preferred to try a different chemo cocktail vs. thersphere. He wasn't opposed to the idea, he just thought there was something else that may work and it did.

    I will keep you, your father and family in my thoughts.

    Take care,
    Carolyn

    Hi Cindy
    Thanks for your
    Hi Cindy
    Thanks for your recent dad update! Yes, as William has said, Sherri and Jim are going through this same exact thing. Jim had ec with mets to the liver, and is have the therasphere treatment, and doing very well. I was happy to hear that the dr. in New Orleans did suggest getting a second opinion. And Sloan in NY is an excellent choice. Good for you being on top of things and already making the appointment! Pat yourself on the back. Glad to hear dad is very positive and willing to fight, that is half the battle.
    We will be thinking of you all and praying for safe travels and a positive outcome at Sloan. May God grant you peace at this difficult time. Keep in touch. Hugs to all of you!
    Tina
  • colleen B
    colleen B Member Posts: 25
    #7
    Sloan Kettering
    Sloan Kettering is where my husband is being treated....so i am very curious whether your Dad will get the same treatment as my husband. He also has two spots of esophageal cancer on the liver. With the last cat scan one of the mets on the liver has shrunk dramatically. The other looked the same ..but we were told it might have been affected by the chemo but it is still showing up on the cat scan.

    If you want to contact me with an email ..please do that. I am not sure how to use the discussion board...but if you want to talk in private I would do that with you...

    I recommend though making an appointment to see Dr. Yeung 646-888-0800

    http://www.mskcc.org/mskcc/html/97472.cfm

    at The Bendheim Integrative Medicine Center at 1429 First Avenue (at 74th Street)

    He runs the herbs web site and can give information about the interactions between foods, herbs and chemotherapy. Ask about curcumin, garlic and mushrooms and what other foods and herbs look "promising." The studies on people have not been done...but there are some indications that some foods and herbs might help...if there is no harm in using them and they might help, why not try them?

    This is the web site that Yeung is in charge of...

    http://www.mskcc.org/mskcc/html/11570.cfm

    and you can ask questions yourself here:
    http://www.mskcc.org/mskcc/html/11917.cfm

    at the botom you can send an email when you click on "contact us"
  • unclaw2002
    unclaw2002 Member Posts: 599
    #8
    colleen B said:

    Sloan Kettering
    Sloan Kettering is where my husband is being treated....so i am very curious whether your Dad will get the same treatment as my husband. He also has two spots of esophageal cancer on the liver. With the last cat scan one of the mets on the liver has shrunk dramatically. The other looked the same ..but we were told it might have been affected by the chemo but it is still showing up on the cat scan.

    If you want to contact me with an email ..please do that. I am not sure how to use the discussion board...but if you want to talk in private I would do that with you...

    I recommend though making an appointment to see Dr. Yeung 646-888-0800

    http://www.mskcc.org/mskcc/html/97472.cfm

    at The Bendheim Integrative Medicine Center at 1429 First Avenue (at 74th Street)

    He runs the herbs web site and can give information about the interactions between foods, herbs and chemotherapy. Ask about curcumin, garlic and mushrooms and what other foods and herbs look "promising." The studies on people have not been done...but there are some indications that some foods and herbs might help...if there is no harm in using them and they might help, why not try them?

    This is the web site that Yeung is in charge of...

    http://www.mskcc.org/mskcc/html/11570.cfm

    and you can ask questions yourself here:
    http://www.mskcc.org/mskcc/html/11917.cfm

    at the botom you can send an email when you click on "contact us"

    Colleen,
    I wanted to send
    Colleen,

    I wanted to send off this quick email. I am getting ready for dinner guests.

    My email is collincin@gmail.com and my home phone is 302-477-1370 (rarely here) and cell is 302-561-4332 best place to contact. I would love to speak with you. His regular oncologist is Dr. Jangigian (sp).

    Thanks for reaching out --- and we may have an opportunity to meet depending on where you are and when you are at the hospital.

    Best,
    Cindy
  • Lylesmyprince
    Lylesmyprince Member Posts: 130
    #9
    Dear Cindy
    I'm sorry to hear that the cancer in your dad has spread...but there is still a lot of fight to be had. Stay strong, Sweetie!! It is a rough road but you seem strong and your dad seems ready for a fight! So many on this site are here to help and encourage you...but so much more...they are here to pray!

    Prayerfully,
    Susie
  • colleen B
    colleen B Member Posts: 25
    #10
    unclaw2002 said:

    Colleen,
    I wanted to send
    Colleen,

    I wanted to send off this quick email. I am getting ready for dinner guests.

    My email is collincin@gmail.com and my home phone is 302-477-1370 (rarely here) and cell is 302-561-4332 best place to contact. I would love to speak with you. His regular oncologist is Dr. Jangigian (sp).

    Thanks for reaching out --- and we may have an opportunity to meet depending on where you are and when you are at the hospital.

    Best,
    Cindy

    e mail problem
    Hi Cindy,

    I tried to send you an email but for some reason it failed

    I used collincin@gmail.com

    colleen
  • colleen B
    colleen B Member Posts: 25
    #11
    unclaw2002 said:

    Colleen,
    I wanted to send
    Colleen,

    I wanted to send off this quick email. I am getting ready for dinner guests.

    My email is collincin@gmail.com and my home phone is 302-477-1370 (rarely here) and cell is 302-561-4332 best place to contact. I would love to speak with you. His regular oncologist is Dr. Jangigian (sp).

    Thanks for reaching out --- and we may have an opportunity to meet depending on where you are and when you are at the hospital.

    Best,
    Cindy

    botanicals-herbs/angiogenesis
    This is part of the email that failed:

    This is my opinion...but I think there is no money to be made with finding out if botanicals can affect cancer. Most botanicals are very inexpensive or very cheap. The cancer trials are funded by pharmaceutical companies that want to make money selling their drugs...and the trials are very expensive and run over several years. So there is very little interest in testing the botanicals because there is no money in them.

    Also sometimes an herb or botanical looks good in tests with mice or in a petri dish but when used with people they do not have an effect.

    My view is that if the herb does no harm ..and looks promising scientifically (promising meaning it might affect cancer) then I will use it...

    I try to follow the book, "Anti Cancer" by Servan-Shreiber

    http://www.amazon.com/Anticancer-New-Way-Life/dp/0670021644/ref=sr_1_fkmr0_1?ie=UTF8&qid=1280664545&sr=8-1-fkmr0

    If you can stop blood vessels from forming to cancer cells you can stop or limit their growth..called angiogenesis

    http://www.youtube.com/watch?v=C_5Z31mUmtc&feature=channel

    http://www.youtube.com/watch?v=ZJ1mTk0ikaI

    http://en.wikipedia.org/wiki/Angiogenesis_inhibitor
  • unclaw2002
    unclaw2002 Member Posts: 599
    #12
    colleen B said:

    e mail problem
    Hi Cindy,

    I tried to send you an email but for some reason it failed

    I used collincin@gmail.com

    colleen

    Thats what I get for sending
    Thats what I get for sending messages in a hurry. My email address is collinscin@gmail.com. Thanks for the information. Best, Cindy
  • unclaw2002
    unclaw2002 Member Posts: 599
    #13
    Lylesmyprince said:

    Dear Cindy
    I'm sorry to hear that the cancer in your dad has spread...but there is still a lot of fight to be had. Stay strong, Sweetie!! It is a rough road but you seem strong and your dad seems ready for a fight! So many on this site are here to help and encourage you...but so much more...they are here to pray!

    Prayerfully,
    Susie

    Thank you everyone for your
    Thank you everyone for your kind words, encouragement and support. I really appreciate it. Learning about the right questions to ask is so important before you see the doctors and I have plenty to read and learn before Thursday --- and of course there is tons of information out there about treatments for mets to the liver from colon cancer . . . but EC cancer as usual is the red headed step child. We all need to begin the effort to have April named EC awareness month in out states and nationally --- research, which means $$$$ and public awareness about reflux and the need for early diagnosis. Years ago before Katie Courich's husband died from colon cancer few people had a colonoscopy - now years later because of the early detection due to the colonoscopy, the incidence of death from colon cancer has dropped dramatically and lots of money is going into research. We need to raise the same level of awareness for EC.
  • sal314
    sal314 Member Posts: 599 Member
    #14
    Prayers Your Way
    Cindy,

    I'll be praying for you and your family. I believe in miracles too (check out my previous posts about my dad's situation)! You just have to keep positive, keep praying and take one day at a time.

    When my Dad was diagnosed in March, I decided to be more intentional about spending time with him. Even if it's sitting on the couch watching golf tournaments wit him (so boring for me!) But I just try to live in the moment with him and enjoy whatever time we may have left.

    Hang in there.

    Blessings,
    Sally

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