Starting the battle and wondering?

EagleMark
EagleMark Member Posts: 4
edited December 2013 in Esophageal Cancer #1

Hi, I'm Mark, 53 year old male with a newly diagnosed esophougous cancer and scared to say the least, came here looking for hope and advice on how to win this battle.

Been having heartburn issues that got worse and loosing weight since I had a gall bladder removal in June 2013. Pain never really went away as eating became harder. Don't think it had anything to do with the gall bladder?

Had some blood in urine again, also had a kidney stone removed a couple years back and no signs of new stones. It goes away but as preventitive did a CT scan of kidney and found a spot. MRI shows the spot as well but benign so just need to check it every 6 months.

But the CT scan showed some thickening of esophougous which explained the problem eating and was probably caused by the heartburn?

So I was scheduled for endiscope (SP?) and found the thickening of esophougous to be much larger tumor and byopsies were taken. They came back positive for cancer.

Tuesday I get a PET scan to see if the cancer has spread. Chemo and radiation is being sheduled. The doctors are not sure where to send me for surgery after that because I have had a bariatric Ruen Y bypass years ago... so advise on this complication would be appriciated?

Eating any solid food has slowly gone away and I'm down to liquids at this time. Have lost 55 pounds since June. Trying to keep some nutrition and health wise most of my food intake is protien drinks and vitimans. Advice on nutition would be apprciated?

Zantac and Carafate seem to be keeping the heartburn under control. I've added benafiber to proteirn drinks to get constipation under control along with more water. But seems even water and drinks are getting harder, must sip slowly or it backs up and very painful. Feeling weak and tired from the lack of nutrition and all the weight loss.

Really scared at the moment from all this and looking up survival rates for esphogous cancer has NOT helped! Seen many survivors here with many years so there may be hope?

I'll add more info when I get it like stage and? I guess the PET scan will tell me more?

Would like some help as to how to get through the chemo, radiation as well as keeping nutrition up to keep the body healthy for the fight! Am I going to loose my hair? Just wondering if I should shave the head and beard before I get started? I'm not a very hansome guy to begin with!  LOL!

Comments

  • bob0008943
    bob0008943 Member Posts: 11
    #2
    sorry

    i am sorry to hear about your cancer. i was told i had cancer over the phone by my doctor. your first step is to accept you have cancer, then move on. the emotional side is a biggy. face it. if you need surgery, get a second opion. get the best surgery done by someone who has done lots of them at the big hospitals. just remember, you are in God's hands. be positive no matter what. God will be with you.

  • dfd24
    dfd24 Member Posts: 91
    #3
    help with keeping weight on

    hello, 

    when my husband was first diagnosed and about to start chemo an nurse told him to eat plenty of cream, rich heavy cream , non liquid cream  , ice cream etc  . in fact it does help with the weight .

    all the best,

    danièle

  • dfd24
    dfd24 Member Posts: 91
    #4
    help with treatment

    Hello again,

    My husband was diagnosed in march 2010. had the chemo radiation and Ivor lewis. He had a relapse last year, 2012,  so more chemo . When he had his relapse they forgot to test for HER2  and they tested this year when I asked them about it and he turned out to  HER2 positive . Now he gets Herceptin along with the chemo. Make sure to ask them to test you for HER2.

    so My husband has had a lot of treatment, but he feels really good right now. What has helped him a lot is keeping up with physical exercise, even when he feels a bit tired. In his case he bicycles all over Paris as a mode of transport. Also of course keep up with nutrition in any way you can .

    again, wish you all the best,

    danièle

  • EagleMark
    EagleMark Member Posts: 4
    #5
    dfd24 said:

    help with treatment

    Hello again,

    My husband was diagnosed in march 2010. had the chemo radiation and Ivor lewis. He had a relapse last year, 2012,  so more chemo . When he had his relapse they forgot to test for HER2  and they tested this year when I asked them about it and he turned out to  HER2 positive . Now he gets Herceptin along with the chemo. Make sure to ask them to test you for HER2.

    so My husband has had a lot of treatment, but he feels really good right now. What has helped him a lot is keeping up with physical exercise, even when he feels a bit tired. In his case he bicycles all over Paris as a mode of transport. Also of course keep up with nutrition in any way you can .

    again, wish you all the best,

    danièle

    PET Scan

    Hard to find good news when you have been diagnosed with cancer... but I had the PET Scan and came back with nothing other then the esouphougous cancer, no lymph nodes or nothing showing! Woo Hoo! Guy at scan was sympithetic when I asked for something, anything as tomorrow is Christmas and I have to wait? He showed me it all and said to not let doc know and act suprised... but he did say, "At this point, you know this is the best news you could here!"

     

    Start Chemo and radiation on Monday.

  • Tkincaid2
    Tkincaid2 Member Posts: 13
    #6
    Keep us posted!

    I'm a 46 year old female diagnosed 11/7/2013. I'm in my 5th week or chemo/radiation. My 4th week was somewhat my toughest week so we had to change up my chemo a little this week. I was on cisplatin/5FU and daily radiation...switched from cisplatin to carboplatin but nausea and dehydration have been my issues. Make sure to have good anti-nausea meds available but be mindful that zofran can cause severe constipation (I, painfully, figured that one out!). Good luck to you - keep us posted!

  • BruceInFla
    BruceInFla Member Posts: 7
    #7
    Hair loss

    Mark,

    I've had several different chemotherapy regimens and some caused me to lose some hair, all of my hair, and none of my hair.  The worst was Carboplatin with taxol.  Bald as a bowling ball, everywhere.   Currently am on FOLFOX/5fu which does not seem to cause hair loss in my case.  I decided to shave my head when it started to come out in clumps.  I read somewhere that hair loos is not generally noticeable until you lose around 50%, but when it starts coming out it comes out fast.  I didn't think I would look good bald either, but was sastisfied with the outcome.  Now I think every bald person I see is beautiful.

  • mardigras
    mardigras Member Posts: 215 Member
    #8
    Welcome Mark

    Hello Mark and welcome to our growing community. I'm so sorry that you find yourself here.

    Do you know, my husband sailed through his chemo and then had the Ivor Lewis OP. He is

    almost two years post surgery and going from strength to strenght. I'm not saying for a moment

    that post surgery was an easy ride, but he got there and now eats almost anything he wants.

    The biggie at the moment for you is to make sure that you have a diagnosis from a very

    experienced upper GI consultant. Get checked for the HER2 gene and try and keep as healthy as

    possible until your treatment. Rob lost his hair yes and it grew back AND??????.

    Positive thinking, that's the key.

    Don't ever let anyone tell you that you aren't beautiful. Everyone here is a beautiful person and we

    all want to help one another. That's what makes our club great.

    I wish you all the luck in the world.

    Prayers. love and a hug,

    Marci

  • trainscotch
    trainscotch Member Posts: 10
    #9
    Hang in there

    Mark,

    Don't know where to start, you have had quite a trip. Hopefully it gets better.

    I am 11 months post diagnosis of esophageal cancer. I was lucky, I was in chemotherapy and radiation at MISTI within a month. Then after a negative pet scan, surgery to remove most of the stomach and esophagus. All is well, except for the eating. I am limited by the volume I can take at one time. The snacking is good anything I want, and liquids are easier. I take generic  Ensure daily. 

Discussion Boards