Just found out - Husband stage four - need encouragement

newbutterfly
newbutterfly Member Posts: 7
edited March 2014 in Esophageal Cancer #1
We just found out that my husband, diagnosed with EC on July8th, is stage four, with a tumor on his spine that is so close to the nerve it will paralyze him without immediate radiation which starts Tues. We saw a wholistic herbalist who specializes in CA and had been thinking about no chemo after what he said. But the oncologist said chemo would allow him to eat better. They did admit that even if it went into remission with chemo and radiation for the tumors in his back and his esophagus at the GE junction, that after a period of remission it will come back. With no chemo/radiating life expectancy is 8 months. After some false starts this week the good news is that we have finally assembled a medical team with the right oncologist ( after firing the first one who did not even read the whole PET scan report and said it was stage 2), we have the right radiation Dr and the right herbalist. They think it is inoperable so we had to cancel the hope for MIE with Dr. Kassis at Ohio State Univ. Does anyone have anything positive to say about Stage Four. My heart is broken and I need some suppport and hope.

Comments

  • sal314
    sal314 Member Posts: 599 Member
    #2
    Newbutterfly
    From reading your post, sounds like you've already gotten a second opinion.

    Don't know if it's much encouragement, but my father just got a second opinion and went from a Stage 4 EC terminal diagnosis to a hopeful, cureable Thyroid type of cancer! The mass on the outside of his esophagus is not a true "tumor" according to this new doctor. It's more a nodule and glandular issue. They think it's related to the Thyroid.

    Our heads are all spinning at the moment. I'm a little ticked at the radiologist who I think just saw a spot on the esophagus and swollen nodes and just slapped the esophageal cancer label on him and wrot him off as terminal!!

    Needless to say, this new doctor after studying everything, says she's 98% certain that it's not esophageal cancer, but Thyroid related. So...you go from a 3% survival of 3 years to a 98% chance of total cure! She told him it's very treatable even when it's in the liver or brain! Amazing!!

    We're all a little skeptical, but to be given this as a possiblity is truly a blessing!
    AFter he's done with his chemo he will go see a thyroid specialist and see what they have to say!

    ALl that is to say...things can change on a dime. Keep researching, networking and if you still aren't at peace with the diagnosis or the game plan your doctor has, get another opinion!

    My mother and I always felt there was something "off" with my dad's diagnosis when he started to respond so well to chemo. The liver mets are almost all gone. The nodes and glands are back to "normal" size. The cancer has not spread. He can eat and swallow with no problems whatsoever and his weight, though had dropped originally at the time of diagnoses (March 13, 2010), has remained steady throughout his chemo. His doctors keep asking him how he feels and he says he's feeling better than he ever has. They look at him and think he's lying! LOL.

    Anyway...hang on to hope! Miracles still happen!!

    I will be praying for you and your husband! Please keep us posted.

    Blessings,
    Sally
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #4
    hope
    newbutterfly
    I don't know if I have anything positive to say about stage iv.....but I can cetainly give you some hope. My husband was dx March 09 with stage iv. Radiation and surgery were not options.....he had mets to lung, liver, and peritoneal cavity. Chemo was our only option. If he chose to do nothing...they gave him 3 - 4 months. Well we chose the chemo....4 sessions of Cisplatin, Taxotere, and 5-FU....each session was 120 hours. After 2 rounds, we went into remission. After the 4th round we went on Xeloda (5-FU in an oral form) and Herceptin. That kept him in remission until May of this year. Longer than they expected. Charlie is now on chemo again....Taxol and Carboplatin. He started having strouble swallowing so we may either do some radiation to the esophagus or possibly a stent in the esophagus. But after 2 rounds of chemo, his swallowing is getting better...so the chemo must be working. We will continue to address each issue as we need to. We are now 16 months into this journey and I know how precious each moment is. He has already beaten the odds and we pray he continues to do so. So there is some hope to try to get your husband into remission.
    I will keep both you and your husband in my prayers....
    Stay strong,

    Jane
  • zinniemay
    zinniemay Member Posts: 522
    #5
    JaneE2366 said:

    hope
    newbutterfly
    I don't know if I have anything positive to say about stage iv.....but I can cetainly give you some hope. My husband was dx March 09 with stage iv. Radiation and surgery were not options.....he had mets to lung, liver, and peritoneal cavity. Chemo was our only option. If he chose to do nothing...they gave him 3 - 4 months. Well we chose the chemo....4 sessions of Cisplatin, Taxotere, and 5-FU....each session was 120 hours. After 2 rounds, we went into remission. After the 4th round we went on Xeloda (5-FU in an oral form) and Herceptin. That kept him in remission until May of this year. Longer than they expected. Charlie is now on chemo again....Taxol and Carboplatin. He started having strouble swallowing so we may either do some radiation to the esophagus or possibly a stent in the esophagus. But after 2 rounds of chemo, his swallowing is getting better...so the chemo must be working. We will continue to address each issue as we need to. We are now 16 months into this journey and I know how precious each moment is. He has already beaten the odds and we pray he continues to do so. So there is some hope to try to get your husband into remission.
    I will keep both you and your husband in my prayers....
    Stay strong,

    Jane

    hope
    Jane,
    I almost (Well I did) cry reading your post, my husband had E.C. t4 n1 Jan 2009 they treated him with Cisplatin, they thought they got it but in Dec they saw nudules but said they would watch them, then May this year they had grown and now he is taking chemo Carbosplatin, I am scared and worried all the time but you give me hope. I read so much of these post , that I don't know what is going on. So Thank you so very much.
    We go Thursday for a C.T. scan and chemo they said they will know if it is helping then so you know the fear that is always around us.
  • cfight
    cfight Member Posts: 69
    #6
    My father was diagnosed with
    My father was diagnosed with Stage IV EC with mets to bone in arm in December. He started chemo in January and has had limited side effects. His biggest issue has been fatigue, but we figured out that his blood pressure medication needed adjustment and he's much better now!

    He had total tumor reduction in his esophagus after 3 rounds of chemo. Then, we found out it had spread to his liver. He's responding to the second line of chemotherapy treatment and the tumors are shrinking. I did encourage my parents to explore homeopathic options to boost his immune system, but they decided not to go that route as of right now.

    The past 7 months have been a roller coaster to stay the least. There's been good days and challenging days, but he continues to fight.

    You've found a wonderful resource at CSN -- this site and the people on here have been a lifeline for me.


    My thoughts go out to your family!
  • JaneE2366
    JaneE2366 Member Posts: 289 Member
    #7
    zinniemay said:

    hope
    Jane,
    I almost (Well I did) cry reading your post, my husband had E.C. t4 n1 Jan 2009 they treated him with Cisplatin, they thought they got it but in Dec they saw nudules but said they would watch them, then May this year they had grown and now he is taking chemo Carbosplatin, I am scared and worried all the time but you give me hope. I read so much of these post , that I don't know what is going on. So Thank you so very much.
    We go Thursday for a C.T. scan and chemo they said they will know if it is helping then so you know the fear that is always around us.

    you are welcome
    zinniemay,
    You are welcome. Will be praying for good results of Thursday. Charlie will be having another PET soon to determine if the chemo is working. All you can do if try to stay on top of everything...not a small task...and hope and pray it all works.
    Stay strong,
    Jane
  • zinniemay
    zinniemay Member Posts: 522
    #8
    JaneE2366 said:

    you are welcome
    zinniemay,
    You are welcome. Will be praying for good results of Thursday. Charlie will be having another PET soon to determine if the chemo is working. All you can do if try to stay on top of everything...not a small task...and hope and pray it all works.
    Stay strong,
    Jane

    Again
    Jane,
    Thank you so much , I am not good with all the terms , but am learning . We have a hard road ! I wish you and all the best I can. My mind is so wrapped in THursday it is hard to think. I can't go to sleep but when I finally get to sleep I can't get up. Greg is very tired but he sure keeps going. So hold us in your thoughs and we will do the same for you all,
  • sandy1943
    sandy1943 Member Posts: 824
    #9
    zinniemay said:

    Again
    Jane,
    Thank you so much , I am not good with all the terms , but am learning . We have a hard road ! I wish you and all the best I can. My mind is so wrapped in THursday it is hard to think. I can't go to sleep but when I finally get to sleep I can't get up. Greg is very tired but he sure keeps going. So hold us in your thoughs and we will do the same for you all,

    So many of the post are
    So many of the post are given by caregivers. I am a cancer survivor--scans indicate cancer free since Nov. 08. I was stage 3. I'm new and like you I don't know all the terms. My husband and daughter are my care givers. I say are because the doubt of cure is always in the back of our minds. My husband refers to my treatment as our journey and he is right! They have taken every step with me and had pressure on them I didn't have. I understand the worry! I still see it in my husband. He is so protective of all that I do. This is a hard road each of you are traveling. Since joining in July. I try to read posts everyday, Because the one thing I can do is pray for each of you. My thoughts and prayers are with you,
    Sandra
  • zinniemay
    zinniemay Member Posts: 522
    #10
    sandy1943 said:

    So many of the post are
    So many of the post are given by caregivers. I am a cancer survivor--scans indicate cancer free since Nov. 08. I was stage 3. I'm new and like you I don't know all the terms. My husband and daughter are my care givers. I say are because the doubt of cure is always in the back of our minds. My husband refers to my treatment as our journey and he is right! They have taken every step with me and had pressure on them I didn't have. I understand the worry! I still see it in my husband. He is so protective of all that I do. This is a hard road each of you are traveling. Since joining in July. I try to read posts everyday, Because the one thing I can do is pray for each of you. My thoughts and prayers are with you,
    Sandra

    friends
    Sandy,
    My husband has been my caregiver since we married in 1974. He took care of me with love and support. I had my left foot amputated at age 2, I have H.H.M.L. it is rare. So He had always been in good health till 2008 by Jan 2009 he found out he had E.C. , we went to Ann Arbor Mi.For treatment. May 2010 it had came back in his lungs. So now I am his care giver, I can't say that I do that much for him. He is still doing things . He just gets tired very easy. So I spend allot of time watching him sleep. We go THursday for a C.T. scan to see if it is helping . Thank you for the prayers.
  • newbutterfly
    newbutterfly Member Posts: 7
    #11
    unknown said:

    This comment has been removed by the Moderator

    Thanks for the suggestions
    Because of your suggestion, I convinced my husband to get the chemo port. It is being put in on Friday, July 30th. Paul is 60. We started radiation today targeted to the mass on his spine. We are hoping for some relief to his pain with the radiation. Thank goodness for this site.
  • colleen B
    colleen B Member Posts: 25
    #12
    curcumin
    My husband also has stage IVb with esophageal cancer in the liver. He has had now 9 rounds with oxaliplatin and 5 FU

    This is part of the report from the cat scan done on June 7, 2010 and he had a 50% decrease in the original esophageal tumor.

    Thoracic nodes:

    A 1.2 x 0.8 high right paratracheal node was 1.3 x 0.9 previously. A right lower paratracheal node is 1 x 0.6 cm, decreased from 2.4 x 2.1 cm. The subcarinal node seen previously has decreased. There is decrease in the extent of esophageal mass with the thickest mural component now 0.8, decreased from 0.4 cm. (sic..it looks like an error was made...and the numbers 0.8 and 0.4 were reversed in the report.)

    Hepatobiliary:

    The liver is not enlarged and there is no biliary dilation. 2.6 x 0.9 cm focal area of low attentuation anteriorly within segment 4B is unchanged from prior study. A 1.1 x 0.4 cm low attentuation mass within segment 6 is the remnant of what had been a 3.4 x 2.2 cm mass on March 11, 2010. No new hepatic masses. Gall bladder is unremarkable.

    Abdominopelvic Nodes:

    The periceliac adenopathy seen previously has resolved. The largest remaining node medial to the portal vein is 1.3 x 0.5, decreased from 1.4 x 0.8 ( series 2 image 65)

    Impression:

    1. Since March 11, 2010 marked decrease or resolution of mediastinal lymphadenopathy with a stable high right paratracheal node and a much smaller right lower
    paratracheal node remaining.
    2. Interval decrease in the extent of esophageal mass.
    3. Interval decrease in size of hepatic metastasis within segment 6. Low attentuation lesion anteriorly in segment 4B is stable
    4. Decrease in size of abdominal lymphadenopathy.


    Everything else was unremarkable except that his prostate is enlarged and the urinary bladder is poorly distended and not well evaluated.

    I had sent an email to Dr Aggarwal at MD Anderson and he recommended using curcumin and these are the curcumin supplements we use:

    Theracumin http://theravalues.com/english/products/mat_curcumin.html

    Longvida http://www.longvida.com/Longvida-Research-Part-II_dfc172.html

    AFI Curcuminoids http://www.amazon.com/Curcuminoids-Complex-Antioxidants-Extracted-Turmeric/dp/B00110I0AU

    I have been following the anti cancer book by Servan Screiber

    http://www.amazon.com/Anticancer-New-Way-Life/dp/0670021644/ref=sr_1_1?ie=UTF8&s=books&qid=1280196577&sr=8-1

    and I am now giving my husband a clove of garlic several times a day after cutting it up and putting it into a capsule.

    We are also beginning to use shitake and maitake mushrooms...

    You can research different food and supplements here:

    at Sloan kettering... http://www.mskcc.org/mskcc/html/58481.cfm

    and you can email them to ask a question about supplements...

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