A lurker finally speaks

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Dena_T
Dena_T Member Posts: 3
My dad was diagnosed with this beast on 2/28/12. I have been a reading machine for this past week...a lot on this very informative discussion board. He lives in a small town in Southwest Kansas (I am in Arkansas, 8 hours away) He was about to have a stent put in which I didn't think sounded good but luckily the Drs opted for a feeding tube instead (G tube I believe) That procedure is being done tomorrow. I am going there tomorrow as well so all of the information I have so far is from other relatives. I have lots of questions and can hopefully get answers with it being the weekend and Drs possibly not being around much. All I know so far is that it is Adenocarcinoma (because Barrett's Esophagus was mentioned), that it is in several lymph nodes, and that it has possibly spread to the pancreas(per CT scan) He hasn't had a PET scan done yet, hopefully that doesn't reveal more bad news. No stage has been mentioned but I'm guessing IV since the pancreas was mentioned and he was told by a Dr that it wasn't curable they were just making his quality of life better. A Dr also told him that he had anywhere from a month to a year left, but I've tried to ignore the statistics. He in Wichita (the closest "city") which is 4 hours away but will be going home soon hopefully to start chemo and radiation. The whole situation just breaks my heart. Luckily at this point he is in little pain (some back aching) and has only some discomfort from his esophagus being completly blocked. Just thought I'd introduce myself. This seems like a strong group with lots of information and support and I'm glad I found you.

Comments

  • sangora
    sangora Member Posts: 213
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    Glad you found us
    Sorry you had to find us, but glad you did. Don't get down over numbers. When I was DX in April 2010, my esophagus was completely blocked and I had mets to the liver. They gave me 3-6 months. I have done very well and 2 years later I am still kicking. I also have a G tube. If your dad can go into this with as upbeat an attitude as possible under the circumstances he will do a whole lot better. I am now on a chemo break but normally take chemo every 21 days non stop. I am on my 5th drug now. Tell him he is not alone with this and that all of us pull for each other. SAm Stage IV
  • Heeran
    Heeran Member Posts: 171
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    Welcome
    Hi and welcome to the site. As a caregiver myself to my mother, it's a long road but you've made a great decision in reading the posts from this board. It's really informative here and there's a lot of caring people. I really don't know how I would have gotten through with all the ups and downs without visiting this board. Please keep us posted with the weeks and months ahead.

    Heeran
  • monica_sss
    monica_sss Member Posts: 54
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    New too
    Hello, I am pretty new here as well (Mom was dx in late November). The circumstances stink but I'm glad you found this resource. My Mom is stage 3. Safe travels this weekend.
  • BobHaze
    BobHaze Member Posts: 162 Member
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    Heeran said:

    Welcome
    Hi and welcome to the site. As a caregiver myself to my mother, it's a long road but you've made a great decision in reading the posts from this board. It's really informative here and there's a lot of caring people. I really don't know how I would have gotten through with all the ups and downs without visiting this board. Please keep us posted with the weeks and months ahead.

    Heeran

    How's your mother doing?
    Heeran:

    I haven't seen you post in quite some time. How is your mother doing?

    Bob
    T1aN0M0
    dx 8/3/11
    MIE 9/23/11
  • Ginny_B
    Ginny_B Member Posts: 532
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    G-Tube is good!
    Hi Dena, sorry you had to find your way to this forum, but it is loaded with help and information!

    My mom had a G-Tube placed and it was the BEST thing! Mom is 85 and is inoperable. She finished chemo and 30 days of rads. She's now doing 4 treatments of internal rads. Very difficult for her.

    Had it not been for the G-tube she would not have been able to eat. I was giving her food and 3 boosts a day to consume. I was feeding the other 3 Boosts via G-tube. Now, after her second round of internal rads, she cannot pass anything down the esophagus, so all feedings are through the tube.

    She feels no adverse effects. Don't fret the G-tube. We have a home health nurse who comes weekly and a PT who comes to help mom. They are angels from God! Hospice was here to give us an orientation for when that time comes. For now, mom is going to proceed with another round of chemo - Erbitux. She had 5FU originally via 24/7 pump. that was hard on her.

    Good luck! Post often and ask a million questions!
  • JReed
    JReed Member Posts: 428
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    Glad you found us!
    Hi Dena_T:

    We are so sorry to hear that your dad has esophageal cancer. We are happy that you found us - you'll find a ton of support here and if you have any questions at all, you have a wealth of knowledge at your hands just from the members of this site. Hopefully Paul will see this and respond with some helpful questions that you may want to ask the doctor. I remember when my dad was sick, my mom and him were both glad to have one of the kids there to ask questions - they'd get so riled up they couldn't remember what they wanted to ask. I was like you are - I research and find the questions to ask and the answers I would expect to hear.

    This is heartbreaking - anytime your loved one/s have something you cannot fix yourself - it is very heartbreaking. So glad you are going and you can see dad for yourself and ask the doctors questions. When you find out more information - and have some time, maybe you can update us with what you have found out.

    We will be thinking of you and your dad and praying for the best. Again, please do not hesitate to ask any questions, make any comments, or just plain ol' vent here. And - like they told me when I joined this group - sorry you had to find us, but so glad you did.

    Hugs,
    Judy
    wife of Don
    T3N1M0 dx 11-21-11
    treatment began 1-4 and ended 2-14-12
    chemo and radiation
    surgery scheduled 3-22-12
  • paul61
    paul61 Member Posts: 1,391 Member
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    Welcome to our little EC family
    Dena,

    I am sorry you find us under these circumstances. I hope your Dad is staged at something other than Stage IV, so surgery would be an option, but if they feel the cancer has spread to another major organ like the pancreas you are probably correct in assuming it is Stage IV.
    There are good reasons for ignoring the statistics. They certainly don’t take into consideration the overall health of the patient, the attitude of the survivor, and the support system around the survivor.
    You will find a number of people here who have survived with cancer for some time after being staged at Stage IV. It sounds like your Dad has a strong support system around him; with you and your family, and that is very important.

    I am glad your Dad has a feeding tube rather than a stent, some people here have had good results with a stent but in aggregate it seems most survivors do not have good long term results with a stent.

    As a Stage IV survivor I would be asking my oncologist:

    1. What chemotherapy regimen has the best chance for results; while still maintaining a good quality of life?

    2. How will we measure the level of success of the treatment plan?

    3. Do we have a plan to evaluate the effect of the treatment plan after a few treatments to determine the need to change direction as we proceed with treatment?

    4. What side effects do most patients receiving this treatment plan experience and how will we mitigate those side effects?

    5. Are there any changes in diet, medication, or supplements that my Dad may be taking that should be changed to insure the treatment plan is effective and he has minimal side effects?

    6. What side effects or physical changes should he be looking for that would necessitate a call to your office?

    7. How does he reach your office after hours if he has a question or issue that needs to be addressed?

    I hope your Dad’s oncologist has a positive treatment plan to review with your family when you meet with him. Your Dad is very fortunate that he has a loving family to support him through this difficult time.


    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
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!
  • AngieD
    AngieD Member Posts: 493
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    paul61 said:

    Welcome to our little EC family
    Dena,

    I am sorry you find us under these circumstances. I hope your Dad is staged at something other than Stage IV, so surgery would be an option, but if they feel the cancer has spread to another major organ like the pancreas you are probably correct in assuming it is Stage IV.
    There are good reasons for ignoring the statistics. They certainly don’t take into consideration the overall health of the patient, the attitude of the survivor, and the support system around the survivor.
    You will find a number of people here who have survived with cancer for some time after being staged at Stage IV. It sounds like your Dad has a strong support system around him; with you and your family, and that is very important.

    I am glad your Dad has a feeding tube rather than a stent, some people here have had good results with a stent but in aggregate it seems most survivors do not have good long term results with a stent.

    As a Stage IV survivor I would be asking my oncologist:

    1. What chemotherapy regimen has the best chance for results; while still maintaining a good quality of life?

    2. How will we measure the level of success of the treatment plan?

    3. Do we have a plan to evaluate the effect of the treatment plan after a few treatments to determine the need to change direction as we proceed with treatment?

    4. What side effects do most patients receiving this treatment plan experience and how will we mitigate those side effects?

    5. Are there any changes in diet, medication, or supplements that my Dad may be taking that should be changed to insure the treatment plan is effective and he has minimal side effects?

    6. What side effects or physical changes should he be looking for that would necessitate a call to your office?

    7. How does he reach your office after hours if he has a question or issue that needs to be addressed?

    I hope your Dad’s oncologist has a positive treatment plan to review with your family when you meet with him. Your Dad is very fortunate that he has a loving family to support him through this difficult time.


    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
    Two year survivor

    Life may not be the party we hoped for, but while we are here we might as well dance!

    Dena, Paul has given you
    Dena, Paul has given you excellent advice. I would just add to have a written list of the questions with you when you see the oncologist ( so easy to get side-tracked) and insist on getting a satisfactory answer to each. Also, ignore statistics and predictions. Everyone is a statistic of one.
    Angie Stage 2 BC
    Wife of Larry Stage IV EC DX June 2011
  • Dena_T
    Dena_T Member Posts: 3
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    AngieD said:

    Dena, Paul has given you
    Dena, Paul has given you excellent advice. I would just add to have a written list of the questions with you when you see the oncologist ( so easy to get side-tracked) and insist on getting a satisfactory answer to each. Also, ignore statistics and predictions. Everyone is a statistic of one.
    Angie Stage 2 BC
    Wife of Larry Stage IV EC DX June 2011

    Update
    Well after a quick trip im on my way back home. Im glad I went but was sad to leave. He hasnt lost hardly any weight which is great but I can tell he is hurting. He got a PEG tube and we got him started on lots of fluids and ensure. He cant get anything down orally and he coughs and gags quite a bit. I can also tell his back is hurting him. He goes Tuesday for a PET scan and hopefully starts treatment shortly after. They tried to dilate his esophagus for some relief but it didnt offer much. His tumor is 11cm. They also said there was another a few inches up but that it could be a swelled lymph node.

    From your experiences does chemo and radiation shrink the tumor? I think with just a small shrinkage he would feel so much better. I wish he would take pain meds too. Maybe the docs will get him some good stuff next week for his pain.

    Well thats my vent for now *sigh* it all just sucks
  • Dena_T said:

    Update
    Well after a quick trip im on my way back home. Im glad I went but was sad to leave. He hasnt lost hardly any weight which is great but I can tell he is hurting. He got a PEG tube and we got him started on lots of fluids and ensure. He cant get anything down orally and he coughs and gags quite a bit. I can also tell his back is hurting him. He goes Tuesday for a PET scan and hopefully starts treatment shortly after. They tried to dilate his esophagus for some relief but it didnt offer much. His tumor is 11cm. They also said there was another a few inches up but that it could be a swelled lymph node.

    From your experiences does chemo and radiation shrink the tumor? I think with just a small shrinkage he would feel so much better. I wish he would take pain meds too. Maybe the docs will get him some good stuff next week for his pain.

    Well thats my vent for now *sigh* it all just sucks

    This comment has been removed by the Moderator
  • hdwchisholm
    hdwchisholm Member Posts: 20
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    Dena_T said:

    Update
    Well after a quick trip im on my way back home. Im glad I went but was sad to leave. He hasnt lost hardly any weight which is great but I can tell he is hurting. He got a PEG tube and we got him started on lots of fluids and ensure. He cant get anything down orally and he coughs and gags quite a bit. I can also tell his back is hurting him. He goes Tuesday for a PET scan and hopefully starts treatment shortly after. They tried to dilate his esophagus for some relief but it didnt offer much. His tumor is 11cm. They also said there was another a few inches up but that it could be a swelled lymph node.

    From your experiences does chemo and radiation shrink the tumor? I think with just a small shrinkage he would feel so much better. I wish he would take pain meds too. Maybe the docs will get him some good stuff next week for his pain.

    Well thats my vent for now *sigh* it all just sucks

    food supplement option
    Dena, You may want to try a Carnation breakfast drink for your dad. It comes in a can and has 560 calories. A case of 24 can be purchased for $28 to $32. Less expensive and more calories than ensure. I am in remission from throat cancer and and "drank" 3 to 4 cans per day and 1 or 2 Ensures per day. My son is using the carnation drink now because of his esophageal trauma from a caustic substance.
    Prayers for your dad and you. Homer
  • JReed
    JReed Member Posts: 428
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    Dena_T said:

    Update
    Well after a quick trip im on my way back home. Im glad I went but was sad to leave. He hasnt lost hardly any weight which is great but I can tell he is hurting. He got a PEG tube and we got him started on lots of fluids and ensure. He cant get anything down orally and he coughs and gags quite a bit. I can also tell his back is hurting him. He goes Tuesday for a PET scan and hopefully starts treatment shortly after. They tried to dilate his esophagus for some relief but it didnt offer much. His tumor is 11cm. They also said there was another a few inches up but that it could be a swelled lymph node.

    From your experiences does chemo and radiation shrink the tumor? I think with just a small shrinkage he would feel so much better. I wish he would take pain meds too. Maybe the docs will get him some good stuff next week for his pain.

    Well thats my vent for now *sigh* it all just sucks

    Will the tumor shrink
    Hi Dena:

    It must have been very difficult to leave. Hope your travel home is safe. Don's tumor appears to have shrunk - he is eating better than he did at the time of diagnosis. The surgeon said he could not see any change - but he was looking for any signs of spreading, which thankfully, there were none (and knock on wood that it stays that way). All along, the doctors (surgeon, chemo onc, and radiation onc) told Don that there really wasn't a test they do during treatment to tell, but that Don could 'try' things and see.

    Don got so sick and tired of Boost and soup broth and all the soft foods - he just wanted to chew something. One night he actually ate a frozen pot roast dinner. I nuked it for him and gave him an extra plate and left him alone so he could chew it and spit it out. If I remember right, Cheryl's husband Rickie did the same thing with chinese spare ribs. I guess as long as they don't forget and swallow it - what the heck - have at it.

    Keep us posted on dad and know that we're thinking about you too and how difficult it is to not be close by like you would like to be right now. Keep the faith!

    Hugs,
    Judy
  • jgwright
    jgwright Member Posts: 242
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    JReed said:

    Will the tumor shrink
    Hi Dena:

    It must have been very difficult to leave. Hope your travel home is safe. Don's tumor appears to have shrunk - he is eating better than he did at the time of diagnosis. The surgeon said he could not see any change - but he was looking for any signs of spreading, which thankfully, there were none (and knock on wood that it stays that way). All along, the doctors (surgeon, chemo onc, and radiation onc) told Don that there really wasn't a test they do during treatment to tell, but that Don could 'try' things and see.

    Don got so sick and tired of Boost and soup broth and all the soft foods - he just wanted to chew something. One night he actually ate a frozen pot roast dinner. I nuked it for him and gave him an extra plate and left him alone so he could chew it and spit it out. If I remember right, Cheryl's husband Rickie did the same thing with chinese spare ribs. I guess as long as they don't forget and swallow it - what the heck - have at it.

    Keep us posted on dad and know that we're thinking about you too and how difficult it is to not be close by like you would like to be right now. Keep the faith!

    Hugs,
    Judy

    Eating
    Right now (approximately 6 weeks after chemo/rads) I'm eating just about whatever I want. I can't eat sticky rice and white bread. They stick, and then come back up. I've discovered that the Maruchan Instant Lunch and the NongShim Bowl from Walmart is quite good and only costs 94 cents. For some reason, those ramen noodles just go right down.

    Yesterday I even had a T-Bone steak and small baked potato. It did take me 48 minutes to eat dinner, however...

    --Jerry
  • stephikindred
    stephikindred Member Posts: 140
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    jgwright said:

    Eating
    Right now (approximately 6 weeks after chemo/rads) I'm eating just about whatever I want. I can't eat sticky rice and white bread. They stick, and then come back up. I've discovered that the Maruchan Instant Lunch and the NongShim Bowl from Walmart is quite good and only costs 94 cents. For some reason, those ramen noodles just go right down.

    Yesterday I even had a T-Bone steak and small baked potato. It did take me 48 minutes to eat dinner, however...

    --Jerry

    Eating Well!
    Good for you Jerry! I'm glad you enjoyed a nutritious meal, no matter how long it took!
    Stephanie
  • Ucsf_smile
    Ucsf_smile Member Posts: 79
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    I just wanted to say hi and
    I just wanted to say hi and express my support.
  • TerryV
    TerryV Member Posts: 887
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    jgwright said:

    Eating
    Right now (approximately 6 weeks after chemo/rads) I'm eating just about whatever I want. I can't eat sticky rice and white bread. They stick, and then come back up. I've discovered that the Maruchan Instant Lunch and the NongShim Bowl from Walmart is quite good and only costs 94 cents. For some reason, those ramen noodles just go right down.

    Yesterday I even had a T-Bone steak and small baked potato. It did take me 48 minutes to eat dinner, however...

    --Jerry

    Who cares about time ....
    when you've got a T-Bone and baked potato in front of you! :) Glad you are eating well again, Jerry.

    You're in our thoughts!

    Terry
  • AngieD
    AngieD Member Posts: 493
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    I just wanted to say hi and
    I just wanted to say hi and express my support.

    Dena,
    My husband's

    Dena,
    My husband's swallowing issues went away after the first round of chemo. His esophagus was never completely blocked and he never has had a feeding tube. So, the right chemo will shrink the tumor.

    If, as you suspect, he is Stage IV, I would not think they would do radiation. It can irritate the esophagus and make swallowing more difficult. The radiation/chemo combo is appropriate for Stages below IV in preparation for the surgery. With just doing chemo, they can use a stronger regimen and get those nasty EC cells wherever they are.

    Ignore what any docs or anyone else tells you about time left. Even tho they may think so, they are not God. Try to find some joy in each day and all the time you can spend with your dad, in person, or phoning or whatever.

    We're in KS also--Lawrence.

    Angie Stage 2 BC DX 12/11 Doing chemo
    Wife of Larry: DX stage IV 6/11 Starting new chemo Tuesday
  • Dena_T
    Dena_T Member Posts: 3
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    AngieD said:

    Dena,
    My husband's

    Dena,
    My husband's swallowing issues went away after the first round of chemo. His esophagus was never completely blocked and he never has had a feeding tube. So, the right chemo will shrink the tumor.

    If, as you suspect, he is Stage IV, I would not think they would do radiation. It can irritate the esophagus and make swallowing more difficult. The radiation/chemo combo is appropriate for Stages below IV in preparation for the surgery. With just doing chemo, they can use a stronger regimen and get those nasty EC cells wherever they are.

    Ignore what any docs or anyone else tells you about time left. Even tho they may think so, they are not God. Try to find some joy in each day and all the time you can spend with your dad, in person, or phoning or whatever.

    We're in KS also--Lawrence.

    Angie Stage 2 BC DX 12/11 Doing chemo
    Wife of Larry: DX stage IV 6/11 Starting new chemo Tuesday

    Update
    Well last week Dad went for a consult and his heart rate was high...oxygen was 80 (horrible especially since he's never smoked in his life) turns out there are two blood clots in his lung :( Back to the hospital. He was way less than thrilled. He feels ok since they finally got him pain meds which was another fight. Uugghh. He's home now hopefully he can get treatment started next week. Its like this crap is spreading before our eyes and nothing is being done to stop it!!! Im so glad that i see real life stories here. It seems to help lots more than the scientific statistical stuff. I just feel bad because im so far away and can only go there for a few days at a time. he also got pet scan results...its in his spine :-( a whole new set of stats to read. When he talks to the drs he doesn't want to know his stage or see any of the tests. My mom passed 3 years ago so my aunts are helping him out a lot. He has already mentioned a nursing home which makes me feel bad. He isn't ever very vocal about how he feels or how he wants things handled. Other family members keep saying we need to talk about this but its really not something i even want to think about let alone make him think about. Sigh sorry just had to vent...Goodnight