discouraged and frightened

astlm46
astlm46 Member Posts: 4
edited March 2014 in Esophageal Cancer #1
I had initially joined your discussion back in June and have found it to be most supportive and educational. This is my first post to your site.

My 69 year old husband was diagnosed with esophageal cancer stage 1VB back in March. He had never had any health issues up to that time and led a fairly active healthy lifestyle. A cat scan performed at that time for increasing back pain indicated liver disease. Two days later a colonoscopy,endoscopy and Pet scan revealed the true extent of his illness. He had a mass in his esophagus at the juncture of the stomach (never any complaint of swallowing difficulty)as well as colon, bilateral lung and liver mets. Pathogy report was adenocarcinoma. He very quickly was started on Folfox regimen by an oncologist at Columbia Presbyterian Cancer Center in New York City. He completed his treatments as well as an additional course of oral chemo (Xeloda)in August. The 2 subsequent pet scans have shown no sign of disease(last one late Nov)and we had hoped for a bit of time for him to recover and regain some of his strength. He began to experience headaches , visual difficulty and some stumbling first week of Dec and was diagnosed with brain mets (12 lesions) and completed 15 whole brain radiation treatments on Dec. 21. CA19.9 blood test drawn at that time came back at 600 (normal range up to 37). Repeat value drawn three days later remains elevated. He is now scheduled for a pet scan tomorrow. The back pain which began this whole odyssey has returned, wt loss has begun and fatigue is overwhelming. I'm not sure he will agree to undergo another course of chemo, should it be offered. It's all very scary.

My three children and I are devestated. I am a registered nurse and find myself devoting much time to sites such as yours and researching this terrible disease.

I have read your stories and have gained support in this journey from knowing that many are travelling the same road as our family. I pray for all of you.

Comments

  • Donna70
    Donna70 Member Posts: 852 Member
    #2
    just want to pray for you and your hubby
    Hi,
    You have been given very devastating news. I am not experienced with brain mets so I will hope someone who has had some experience with themselves or a family member come forward and tell you what they know. I will pray for you and your family. This is a terrible disease but you are not alone for sure. Prayers and the hope that the drs can come up with a good plan for your hubby and your family. take care,
    Donna70
  • Unknown
    Unknown
    #3
    This comment has been removed by the Moderator
  • paul61
    paul61 Member Posts: 1,392 Member
    #4
    Prayers coming your way!!
    As a cancer survivor I have often thought about what I would do if I received news like you and your husband have received. While on the one hand I love life and hate the thought of leaving my family, submitting to another round of treatment and the associated side effects (both on myself and my family). It is a difficult decision.

    I know the suffering caused by my cancer is spread farther than me and affects my family and friends as well.

    I can only say that I will pray that you and your husband receive the best medical and spiritual guidance to help you make the best decision about what to do next.

    Best Regards,

    Paul Adams
    McCormick, South Carolina

    DX 10/22/2009 T2N1M0 Stage IIB
    12/03/2009 Ivor Lewis
    2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
    6/21/2010 CT Scan NED

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • sandy1943
    sandy1943 Member Posts: 824
    #5
    Hello, I'm so sorry to read
    Hello, I'm so sorry to read about your husband. Having went thru chemo and surgery , it would be a difficult decision to make whether to take it again. I agree with sherri, that quality of what time is left can sometimes be so much better than Quanity.

    Paul and I had similar diagnosis and treatment. We are two of the lucky ones--Diagnosed at stage 111.

    My prayers are with you and pray that God's guidence will help you all make the right decisions.
    Sandra
  • sandy1943
    sandy1943 Member Posts: 824
    #6
    sandy1943 said:

    Hello, I'm so sorry to read
    Hello, I'm so sorry to read about your husband. Having went thru chemo and surgery , it would be a difficult decision to make whether to take it again. I agree with sherri, that quality of what time is left can sometimes be so much better than Quanity.

    Paul and I had similar diagnosis and treatment. We are two of the lucky ones--Diagnosed at stage 111.

    My prayers are with you and pray that God's guidence will help you all make the right decisions.
    Sandra

    Sorry Paul, I went back and
    Sorry Paul, I went back and looked, You were stage 11. oops! I knew that.
    Sandra
  • Boston67
    Boston67 Member Posts: 61
    #7
    Of Course you are Frightened
    Hi,

    Of course you are frightened, we all are. Most of our lives are driven by fear. I am no different. When I am very afraid, I tell people and they say nice words. It helps me a little.

    I am going to live for quite awhile and will more time for the special bonus' and gifts of grace then I will ever get to have. Every day is filled with one small joy or another, much more then before. A former employee saying how I touched their lives, my families deep and expressed love and caring. Loving words from a caring friend.

    I don't have much time to be frightened, and there is not much to really be frightened about. Most fears never actually materialize. I am not afraid to die, we all die. I have good pain management, so I am not afraid of pain. I am nervous about chemo and haven't started yet, but I don't think it will be fun! Perhaps I will join you in the hard feeling you have expressed. I will try not to, but only time will show me. Now I know why I was tired and in pain and I didn't know anything about that before.

    I will see a cancer therapist for my brain and my emotions and will begin soon, because I think depression of some sort is likely. Therapy always helps these sort of things, even if only a little.

    I have traveled the world and seen abject misery. I was also a soldier and saw a lot. What I have seen in my life tears my hear apart and are all painful memories. We are all so lucky to be in America with the best medical care in the world and the most caring, loving and giving people on earth.

    The moments we spend in fear or depression or dispair are lost and gone forever. I hope you can fight your way through these things to be strong for your loved ones who are suffering with you.

    Love,
    Keith
    Boston age 67
    EC stage IV
  • astlm46
    astlm46 Member Posts: 4
    #8
    Donna70 said:

    just want to pray for you and your hubby
    Hi,
    You have been given very devastating news. I am not experienced with brain mets so I will hope someone who has had some experience with themselves or a family member come forward and tell you what they know. I will pray for you and your family. This is a terrible disease but you are not alone for sure. Prayers and the hope that the drs can come up with a good plan for your hubby and your family. take care,
    Donna70

    more discouraging news
    Thank you for your kind words. My husband (Gene) had a pet scan on Wednesday and results are reoccurrence of cancer in right lung and spine (other areas too?) so we have an appt. on Tuesday to consult the radiologist about some more radiation. Oncologist wants him to have more chemo also. Gene has told the oncologist he can't do anymore chemo so we'll cross that bridge after the radiation. He continues without any swallowing difficulty and eating well. He's trying to keep going with his usual routines before we begin again the next course of treatment.
    Our children still pray for the miracle to save their father from this nightmare.
  • linda1120
    linda1120 Member Posts: 389
    #9
    wondering how you are doing
    I just re-read your original post and wondered how you are doing and what your husband has decided to do. Prayers and thoughts are with you.

    Linda
  • Pat Davis
    Pat Davis Member Posts: 8
    #10
    Hi, my partner of 18 years
    Hi, my partner of 18 years was diagnosed in December. His adenocarcinoma was in the same place as your husband's. He is 67. He had no symptoms at all except for an acute gall bladder attack and the esophageal tumor was discovered by accident.It is Stage IV with mets to liver, which is quite involved. He has just begun the chemo on Jan 24, has had only one infusion of Capecitabine and Oxaliplatin, and taking the oral chemo, Xeloda. He has had relatively few side effects so far and is eating well, no difficulty swallowing but his appetite is down. He is in pretty good spirits and is getting his affairs in order. We were told that the average person with his diagnosis lives for one year. We were stunned. It has all unfolded so quickly and we are trying to live each day at a time and enjoy each day. Not sweating the small stuff so much any more. I know we have a difficult road ahead, and someday I will in all likelihood be facing what you have to face today. I will keep you in my thoughts and prayers and know that I am not alone to come to terms with losing a dear dear life partner. It is frightening at times to think of what will become of us without the other person, but we must go on. One step at a time.
  • astlm46
    astlm46 Member Posts: 4
    #11
    linda1120 said:

    wondering how you are doing
    I just re-read your original post and wondered how you are doing and what your husband has decided to do. Prayers and thoughts are with you.

    Linda

    Gene
    Thanks for checking on us.

    Gene was admitted to Columbia after one radiation treatment to the spine, and has remained an inpatient. He became very dizzy and unsteady on his feet and the pain in his back was not controlled by his pain med while at home. Today he will complete the 8th rad treatment(of 10). He no longer has any back pain complaint, but remains dizzy(the brain mets?)and very fatigued. His appetite is fair. He's basically bedridden except for visits from physical therapy in their attempts to get him moving. Plans for once he completes the radiation are unsure. We're hopeful that once radiation is completed he can regain some of his strength. He's so weak now that the discussion of chemo for the lung cancer doesn't come up. In the past 10 months he has undergone 5 months of chemo, whole brain radiation, and now spine radiation. It's an extremely sad situation.

    I do periodically read the messages on this site, but haven't felt much like posting. Just trying to put one foot in front of the other and be supportive to both Gene and our family.

    I pray for all of those suffering from this scourge and hope God will show mercy.
  • astlm46
    astlm46 Member Posts: 4
    #12
    Pat Davis said:

    Hi, my partner of 18 years
    Hi, my partner of 18 years was diagnosed in December. His adenocarcinoma was in the same place as your husband's. He is 67. He had no symptoms at all except for an acute gall bladder attack and the esophageal tumor was discovered by accident.It is Stage IV with mets to liver, which is quite involved. He has just begun the chemo on Jan 24, has had only one infusion of Capecitabine and Oxaliplatin, and taking the oral chemo, Xeloda. He has had relatively few side effects so far and is eating well, no difficulty swallowing but his appetite is down. He is in pretty good spirits and is getting his affairs in order. We were told that the average person with his diagnosis lives for one year. We were stunned. It has all unfolded so quickly and we are trying to live each day at a time and enjoy each day. Not sweating the small stuff so much any more. I know we have a difficult road ahead, and someday I will in all likelihood be facing what you have to face today. I will keep you in my thoughts and prayers and know that I am not alone to come to terms with losing a dear dear life partner. It is frightening at times to think of what will become of us without the other person, but we must go on. One step at a time.

    Gene
    It's truly amazing that this disease can be so advanced before it is diagnosed.
    We are continuing to struggle with treatments and the progression of this scourge.

    I hope that the treatments will go well for your partner, and that you will get to spend lots more time together.

    I pray for all that travel this road and hope God will show mercy.
  • rose20
    rose20 Member Posts: 258
    #13
    unknown said:

    This comment has been removed by the Moderator

    How to delete posts
    I am sorry but I see where you can edit a post but not how to delete a post.
  • sandy1943
    sandy1943 Member Posts: 824
    #14
    astlm46 said:

    Gene
    It's truly amazing that this disease can be so advanced before it is diagnosed.
    We are continuing to struggle with treatments and the progression of this scourge.

    I hope that the treatments will go well for your partner, and that you will get to spend lots more time together.

    I pray for all that travel this road and hope God will show mercy.

    That's what is so bad with
    That's what is so bad with EC. So often symtoms are not there until it is advanced.
    I try to tell everyone I know, who does have some symtoms to get their dr. to find out what's wrong before it's too late.
    I've never understood why drs put off scoping, but yesterday I was reading that the endoscopy was too dangerous to be routine.
    Praying for you and your husband,
    Sandra

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