Finally Joined The Discussion Forum And Need Assistance

I have been reading this message board since my husband, 57, was told he has stage IV esophageal cancer last September 2006. He was told the standard 6 months to a year if the chemo worked on the tumors to the lungs and liver, and less time if the chemo treatment was unsuccessful. It obviously worked, ( up until a few weeks ago), as he is still with us..and had been continuing to work full time, ( he's an attorney with a triple A personality), ate as he liked, and survived 3 stent placements and 3 stent removals after they all migrated to his stomach. He now has a 'permanet stent', and he is not the better for it. It is causing pain, and he has vertigo so severly  he is unable to walk, eat without throwing up and can no longer track his work, so is staying home for the first time since our journey began with this terrible disease..He has lost 24 lbs in the last three weeks and his doctor finally ordered a scan to check for possible brain tumors and or the stent causing a pinched nerve to create the vertigo, (?).anyway, I guess i am reaching out to ask if anyone else has expereinced the things I am mentioning after they have had a stent put in?

I am so alarmed at the way he is looking and feeling I am beside myself! He is gaunt, sleeps alot, gets confused and disoriented, can't eat, lost his appetite,  he is hydrated, though..but he is so dizzy he walks like a man who has been out to sea for a long time. He complains that the back of his head hurts,  and he has numb feet, both of them, are icey to the touch, elevated blood pressure, and has lost all the feeling in his left hand and most in his right hand, very greyish hue to his skin. All of the last few symptoms happened within the last few days.

 I am very proactive in advocating for my husband but it really took some aggressive action to get them to order this test for him tomorrow..which is not in character with his doctor....My husband really does look like he is nearing death.

Could they be thinking my husband is at the end of his journey and the tests are no longer needed, or is this just so common they are just taking it in stride? Does anyone know if these symptoms are common? I have asked the dr.'s assistant to answer the questions but she has become very vague and said they would call us in for a consult after they get the results of the scanning....

If anyone has any ideas please let me know. When a person you love is facing this formidable foe it is the most agonizing thing to watch, and the most frustrating experience imaginable when you can't help them other than to be there and keep praying the pain and the suffering will just go away by some miracle.

Thank you for taking the time to read this. I have followed many of your stories and have cried while reading them when someone was lost to this disease, and found solace, also, in many of your wise words of comfort and grace.

   

Hi whymd - I am so sorry to hear your husband is having difficulties.  It sounds like you have been a great team for the past year.  It's wonderful that he has done so well and beat the odds the doctors presented him with a year ago.  I lost my Dad to his first round of chemo.  he wasw Stage IV and couldn't swallow, had a feeding tube and trach because the tumors were paralyzing his vocal chords so he couldn't talk and was starting to have difficulty breathing until he had the trach.  Anyway, I am certain you are feeling completely panicked right now and for good reason.  This is a deadly beast no doubt.  But, there is always hope.  I am amazed at the number of people diagnosed stage IV that are doing well years after their diagnosis and many did not have any surgery!  On Cathy's EC Cafe (you can find the link if you google it), there are many patients on their that have been Stage IV for a long, long time and are doing quite well.  Many have hit some very big pot holes as they journey on this road and have rallied back.  I don't have any medical advice to give you and I can't share a similar experience.  I can only tell you that you are not alone in your journey.  The folks on this board are wonderful, courageous, fighters and all are compassionate and no matter what is going on in their lives, they take the time to let you know they are here for you.  I will say, fight for whatever you and your husband feel is important.  Don't let the doctors control your lives.  Yell until you are heard if you need to.  Get your answers so you can fight accordingly.  Check on Cathy's EC Cafe - you may very well find someone that has had a very similar experience.  There are a lot of patients that post regularly on that board and they have been through it all!   My thoughts are prayers are with you and your husband.  Please keep us posted on his progress.  God speed .   karen

Hi there! I have read your story and I'm very sorry to hear that your husband is not getting any better. It sounds like something is definitely wrong with his CNS. I hope the doctors can find the source of pain etc... Prayers are with you both and your family.

 My mom has just found an malignant adenocarcinoma in her lower esophagus, but hasnt yet been diagnosed. We're still having more tests, but we're very scared of the results. She's feeling pain on her left chest side and now there is a small bruise on her abdomem. She can still swallow but cant eat all foods like before. What were your husband's symptoms?

 

First off..  what a great partner and caregiver you are!  This is definately something that brings out the best in relationships. 

You are concerned for a good reason.  Obviously there is something wrong BUT it may be something that can be addressed and taken care of without the worst.  Faith is the one thing that has brought me through my husbands illness and it will bring you through yours. 

Take time before the Dr's appointment to write down your questions and concerns.  Once in there is is not always easy to remember what you wanted to ask, especially if they give you information you were not ready to get.  Write down his specific symptoms and time of day when you tend to notice them occuring and write down his daily routine, sleep patterns, etc. 

Seek a counsel with his Dr alone if you can and ask what to expect in the future (IF this is a life altering episode) of his recovery.  Most Dr's are willing to open up more with the caregiver because they form such a close bond to their patient.

Keep in contact with the great people of this message board.  We can share our life experiences to help guide each other through this journey called Cancer.

L.

 

On 9/8/2007 Worriedsick wrote:

Hi whymd - I am so sorry to hear your husband is having difficulties.  It sounds like you have been a great team for the past year.  It's wonderful that he has done so well and beat the odds the doctors presented him with a year ago.  I lost my Dad to his first round of chemo.  he wasw Stage IV and couldn't swallow, had a feeding tube and trach because the tumors were paralyzing his vocal chords so he couldn't talk and was starting to have difficulty breathing until he had the trach.  Anyway, I am certain you are feeling completely panicked right now and for good reason.  This is a deadly beast no doubt.  But, there is always hope.  I am amazed at the number of people diagnosed stage IV that are doing well years after their diagnosis and many did not have any surgery!  On Cathy's EC Cafe (you can find the link if you google it), there are many patients on their that have been Stage IV for a long, long time and are doing quite well.  Many have hit some very big pot holes as they journey on this road and have rallied back.  I don't have any medical advice to give you and I can't share a similar experience.  I can only tell you that you are not alone in your journey.  The folks on this board are wonderful, courageous, fighters and all are compassionate and no matter what is going on in their lives, they take the time to let you know they are here for you.  I will say, fight for whatever you and your husband feel is important.  Don't let the doctors control your lives.  Yell until you are heard if you need to.  Get your answers so you can fight accordingly.  Check on Cathy's EC Cafe - you may very well find someone that has had a very similar experience.  There are a lot of patients that post regularly on that board and they have been through it all!   My thoughts are prayers are with you and your husband.  Please keep us posted on his progress.  God speed .   karen

Thank you each and everyone for replying to my message. I am home now to just gather a few things to return to the hospital. It seems he had a 3"x4" TUMOR in his head that was cancerous and they removed it Friday night..I think now the doctor will be more attentive when I tell him,' you know he just isn't feeling good, looking well, or acting like himself!'.

He has been out of ICU for a few hours and to the shock of the neurosurgeon he was up walking to the bathroom when the dr. entered the room, he then came back to bed, crossed his legs and started to read the paper when the dr asked if he was having large or small motor skills problems, he laughed and said it felt so good to have the vertigo and other symptoms gone he hadn't noticed anything else.. He is still jumbling a few words, but all else has been ok'd by occupational & physical  therapists and he is already eating his, albeit bland and cremey, food with a gusto. My husband has had the paralyzed vocal chords for almost 6 months, and the numbness in both feet and hands from chem for 5 months. 

He has been removed from his trail drug, and they predict he will be getting the cancer back in various parts of his body as the point of origin, the esophagas, is becoming so large and accelerating at such a rate we can only plan for Hospice or using the Oregon Right to Choose in our final days together.....but, because of the surgery, his days will not be so horrible and the risk of going blind and unable to move has abated. Now he has time for a choice, and to have some quality living before the winding down to the final choice of hospice and/or ORDA, (Oregon Right to Die Act) ...depending on the severity of the pain, etc. We haven't come close to deciding yet, but as that is a very personal ethical question I really won't be discussing that in this forum, or inviting anyone to express their feelings on that subject in a message back to me.

Anyway, thank you so much for this support and your time in writng to me. I am amazed by the kindness of strangers and am so grateful for all of your suggestions and willing accept al the prayers you want to throw out way!  I will continue to send positive thoughts and prayers to you and your loved ones, too!

WhyMD

 

 

 

On 9/9/2007 sydoz wrote:

Hi there! I have read your story and I'm very sorry to hear that your husband is not getting any better. It sounds like something is definitely wrong with his CNS. I hope the doctors can find the source of pain etc... Prayers are with you both and your family.

 My mom has just found an malignant adenocarcinoma in her lower esophagus, but hasnt yet been diagnosed. We're still having more tests, but we're very scared of the results. She's feeling pain on her left chest side and now there is a small bruise on her abdomem. She can still swallow but cant eat all foods like before. What were your husband's symptoms?

 

I am so sorry you are experiencing this horrible fear about your mother's condition. The symptoms my husband had, and has, are typical of stage IV esophageal cancer patients, I think.

I wouldn't want you to take this as your mothers inevitability, since each person is very different and the stages are diagnosed through a battery of tests which your specialist/oncologist will share with you. 

To answer your question, though, his intial symptoms were:

Clearing his throat often as if something were stuck in his throat. Difficulty swallowing. Ache near his solar plexus. Sweats from just walking across the room. Exhaustion. Just feeling off and out of sorts.

By the time we finally went to the doctor he had stage IV cancer.

I can't stress enough that a cancer specialist is the only way to go, and that Cancer Centers, Cancer Clinics at University Hospitals, and very reputable Cancer Hospitals are dedicated and always up to the minute on the latest break-throughs and theories, and trial drugs...all of which can mean every difference in the world to  your mother's recovery and/or survival time and the quality of that time. 

 The first doctor we went to was my husbands GP who said go home, make peace, get ready to die in 3 months..that was almost 1 year ago this month!!!!

My thoughts are with you and please let me know how things turn out for your mother.    whyMD

I just finished reading your first post and the post about the tumor that was removed from your husbands brain.  I say HOORAY that he is so much better after the surgery.  He now has his quality of life back and hopefully it will give you much more time than you originally thought.

Take advantage of how your husband is feeling and do things that the two of you have always wanted to do.  Enjoy life to the fullest.  You never know when a miracle will happen - and they DO happen!

My husband is 64 years old, and was diagnosed with EC stage IV on Dec. 21, 2006.  He was originally only given 3 weeks!  I fought hard for Harley to be treated at Palo Alto CA, and I do believe that is why he is still here with me.  He went from a very, very sick man who couldn't eat, and who lost 35 pounds, to a man who looked perfectly healthy within 3 months of starting his chemo treatments.  (Carboplatin infusion and Xeloda chemo by mouth).

His March CT scan showed a 50% reduction of all the tumors (lungs and liver and of course the esophagus).  May CT scan showed no change.  However, the August CT scan showed the tumors were still shrinking - so miracles to happen.  He has also gained most of his 35 pounds back.

I have no idea what is in the future for Harley and me - but we are taking every advantage of his good health right now.  We leave on a cruise this Sunday - in October we are taking our son, daughter-in-law and grandson to Disneyland, and we've already made plans to take a road trip next year.

We are thankful for each day.  I pray that your husband will continue to improve, continue to eat with gusto, and enjoy life.

Gentle hugs,

Azzie

Wow and double wow!!! I am so happy to hear about your husband, and both of you going on a cruise..that's wonderful!!!

I was raised on the coast, but  not far from Palo Alto , are you talking about Stanford U? Love that place. My mother went there for her breast cancer years ago and they were able to save her life and give her the much needed mental as well as physical tools to have a long and happy life.

All of my husbands latest tests are in and he has many small tumors in his brain left so they are giving him the radiation mask..anyone ever heard of this? They are going to radiate for 3 weeks so he can fend off the worries of blindness, loss of cognitive skills and movement.

They also told us he has less than 2 months left, hopefully a little more, due to the severe spreading of his cancer to his lungs, liver, nodes and stomach. 

So, we are going on a cruise ourselves..we snuggle on the couch, light the candles and put on ocean music and talk about all of our best moments and our silly fights, and our incredible luck at finding one another, about everything we love about one another and the funny stories about when we first met, etc.

We have invited friends and our family over for a big party in a few weeks and we let everyone know this is to celebrate his life now.

 I have asked people to write him something about how knowing him has changed and or added to their lives, and for eveyone to be upbeat and just enjoy the day with him. I want him to hear all this great stuff now, not at his memorial. He has been very a positive force to many people and so he should see and hear how his life has enriched so many , which in turn, like any kindness, enriched people he's never even met. I want him to see and experience what a difference he made in the world just by existing and being his blunt, funny, honorable self! 

It feels like that's all we can do. We set up an appointment the same day as his app't. with his regular oncologist, with a different oncologist,  to get a second opinion right away, knowing the tests results might be this bad.

 She confirmed our reg. doctors opinion. We respect  both doctors, and as they are both considered pioneers in their field, we feel the diagnosis is correct. Each took time to carefully explain, and show us the test results and my husbands medical file.

So now there is just how to finish this journey together remembering the joy and the love, the passion for life, and the many amazing people we have met...our loving children and grandchildren, and all the happy times we had and have together. I just don't see that there is anything else we can do. Our marriage was and is built on realistic objectives and honesty, so I just want him to have the honor and dignity he values so highly until he closes his eyes for the final time.  

And then a part of me will die right along with him.

I keep praying for a cure, a break through, a miracle.......but, really, this is all we know to do right now.

Thank you for your warm and kind letter and I am sorry I have gone on and on so. 

Have a good time, and thank you again for taking the time to write.

whyMD 

After all this I just wanted to say my husband died October 17, 2006 from further complications of bleeding to the brain, which never really stopped after his brain surgery. (Having radiation so soon after surgery made it impossible for the bleeding to stop completely), and from the ever progressive cancer in his esphagus, things just went bad pretty quickly. The Tarciva worked for his liver and lung mets but it just traveled out further to the brain, which is not an uncommon effect, as I have been told. By the time he passed he was was in such agony that I prayed constantly for him to just be released. He was very busy talking to "people" in his room and kept telling one to let go he wasn't ready yet..then I  knew my prayers were answered and he would finally know peace without the terrible agony of his body. When he died he was reaching out to that 'person', where they seemed to always be standing right next to him, close enough to hold his hand. 

We had a wake several days later which was attended by all his partners/coworkers/clients and freinds and family..and the thing over spilled from a large convention room into the hall and an extra conference room. Everyone had rollickingly great stories, and memories, each presented to me before they started with the wish I would accept this gift of their memory or story. I will never forget it. Clients came from all over the US and his partners sat in amazement as the clients not only told of how my husband was able to save many of  their companies, but how they were all looking for a new firm since he was gone...I learned of a new dimension to my husband, and met many people who enjoyed, loved, cared, or just plain liked him..and for all that I felt all those things about him, too! His keen sense of honor, his dedication to the truth, and his wry and witty humour.

 

I am completely devastated for the loss of the warmth of his arms, the hugs of his heart and the kisses of his sweet, sweet love.

This cancer is not so good, and while people are firmly in HOPE they should still be firmly AWARE and if you are thinking of going to the mountains..GO..making out your trust...DO IT...climbing a mountain..DON"T WAIT..and if your time is longer that expected, well, you can't regret what you have done in joy, in need, in loving preparedness for your loved ones, but you can regret what you refused to do....and that is everything you thought you had time for.

Take to time to see around you, enjoy the wonders, inhale the robust perfume of life, and everyday be sure to remember how loved and cherished you are, and how endearingly treasured your moments are with them. They love you..give them some of you while you give some to yourself. It's all we, any of us, have to sustain us. It is our final gift to each other. To love, unconditionally, forever.

  

Sorry, he died 2007 not 2006. Call it emotional editing!