Helena50 - We are moving you to the top so you don't get lost at the end of a string of posts

paul61
paul61 Member Posts: 1,392 Member
edited September 2012 in Esophageal Cancer #1
Helena50

Welcome to our little EC family. I am moving your post to the top under a new topic so it will not be missed at the end of a string of posts.

You posted on Sun, 09/23/2012 - 5:35pm

Need Answers

My husband had stage one cancer three years ago. He had surgery to remove the esophogus and had his stomach streched to be his esophogus. After the first surgery he had an infection and had a second sergury a "C" cut in his back to clear the infection. After that he had a leak and was on a feeding toob for several months. His sergon than place a stent to block the leak and it worked. Two years later he started experincing pain in his lower back after meals. The Doctors did not seem to be concerned with this pain. He began to eat less and less because he was afraid of the pain returning. He went to see his oncologist last year and after a CT scan they found a tumor on the outside of the stomach where the first sergury and where the stomach was attached to the esophogus. They also did an endoscopy and nothing showed up. My husband went through chemo and radiation and was again on a feeding toob. This past February all the chemo was done and he started to feel better and even put on some weight. Three months ago he started having the same back pain and had endoscopy and pet scan and nothing showed up, doctors just perscribed narcotics for the pain. Nothing worked and the pain keeps on getting worst. His Doctors do not know what it is, he has lost weight down to 100 lbs his origional weight was 164 when all this started. He is in the Hospital since Thursday because he was getting very weak and allucinating. I don't know where to turn at this time and looking for any suggestion from anyone. I have no faith in Doctors at this time. Help me and my husband.








It certainly sounds like something is very wrong. If the tumor on the outside of his anastomosis, (the point where his resected stomach was attached to his remaining esophagus), was completely eradicated by the second series of chemotherapy then I would expect his symptoms to be eliminated.

It now sounds like the same symptoms are back again and the fact that they do not see anything with an endoscopy, and a PET scan shows no unusual uptake in the area, seems to rule out a recurrence. It would seem that your husband's doctors should be looking at other tests to define what the problem might be.

I am certainly not a medical professional, but I would be asking:

1. Has a whole body CT scan been done to see if any physical abnormalities show up?
2. Is there anything in your husbands blood tests or organ function tests that is abnormal?
3. Is it possible to do a minimally invasive keyhole surgery to survey the area?

It also seems that they should be able to do a better job of pain management with medications other than, or in addition to, narcotics.

It sounds like you have questions about the competency of your husband's current medical team, perhaps it is time to get a second opinion from a major medical center that specializes in esophageal cancer. If you tell us where you are located we can suggest the nearest major center where your husband could get help from medical teams that are specialists in the treatment of esophageal cancer.

Where is your husband being treated now?

If you can give us a bit more information we are certainly here to help you.

Best Regards,

Paul Adams
Grand Blanc, Michigan

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!
«1

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    #2
    Paul, Glad you moved the
    Paul, Glad you moved the post up, so that we wouldn't miss it.
    Helena50
    I don't have any more info to add to what Paul has said. I will add that I agree with Paul, that maybe it is time to get a second opinion.
    I will be thinking and praying for your husband,
    Sandra
  • Helena50
    Helena50 Member Posts: 20
    #3
    Thank you so very much. We
    Thank you so very much. We are located in the Springfield Mass area. My husband is at Mercy Hospital. I appreciate any suggestions or recomendations.
  • BobHaze
    BobHaze Member Posts: 163 Member
    #4
    Helena50 said:

    Thank you so very much. We
    Thank you so very much. We are located in the Springfield Mass area. My husband is at Mercy Hospital. I appreciate any suggestions or recomendations.

    Mass General
    I know Boston is a bit of a drive from Springfield, but I and another member of this board both had our surgeries at Mass General, by Dr. Christopher Morse who is a wonderful, EC-experienced surgeon and a great guy. I’ve also heard good things about Dr. Raphael Bueno at Brigham and Women’s Hospital in Boston, who is also experienced with esophagectomies. Personally, I would make the drive because there’s a ton of experience with EC in Boston.

    Good luck.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11
  • Donna70
    Donna70 Member Posts: 852 Member
    #5
    BobHaze said:

    Mass General
    I know Boston is a bit of a drive from Springfield, but I and another member of this board both had our surgeries at Mass General, by Dr. Christopher Morse who is a wonderful, EC-experienced surgeon and a great guy. I’ve also heard good things about Dr. Raphael Bueno at Brigham and Women’s Hospital in Boston, who is also experienced with esophagectomies. Personally, I would make the drive because there’s a ton of experience with EC in Boston.

    Good luck.

    FEC,
    Bob
    T1aN0M0
    Dx 8/3/11
    MIE 9/23/11

    sometimes the scans don't show the cancer
    Hoping this is not the case, but wanted to say sometimes the scans do not show the cancer or the Pet scan does not show uptake and you can still have cancer. My original PET scan when I was first dx'd did not show the 4 cm tumor or the positive node only the EUS showed the cancer after the positive biopsy after the original EGD. So hope the drs will try harder to see as Paul says what the problem is, you have to be persistent and insist that as they can see, your husband is getting worse and there must be a reason. So hoping they will find an answer for you and your hubby. take care,
    Donna70
  • paul61
    paul61 Member Posts: 1,392 Member
    #6
    Helena50 said:

    Thank you so very much. We
    Thank you so very much. We are located in the Springfield Mass area. My husband is at Mercy Hospital. I appreciate any suggestions or recomendations.

    Two NCI certified facilities in Mass
    There are two NCI certified cancer centers in Massachusetts. They are:

    Dana-Farber/ Harvard Cancer Center
    Dana-Farber Cancer Institute
    Edward J. Benz, Jr., M.D.
    Director

    450 Brookline Avenue
    Mailstop: BP332A
    Boston, Massachusetts 02115
    Tel: (617) 632-2100
    Fax: (617) 632-4452

    And

    David H. Koch Institute for Integrative Cancer Research at MIT
    Massachusetts Institute of Technology
    Tyler Jacks, Ph.D.
    Director

    77 Massachusetts Avenue, 76-158
    Cambridge, Massachusetts 02139
    Tel: (617) 324-3533
    Fax: (6170 324-2238

    I have heard good things about Dana Farber perhaps you could request that your husband's case be evaluated by someone there. It looks like both of them are about the same distance from you.


    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    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!
  • Helena50
    Helena50 Member Posts: 20
    #7
    paul61 said:

    Two NCI certified facilities in Mass
    There are two NCI certified cancer centers in Massachusetts. They are:

    Dana-Farber/ Harvard Cancer Center
    Dana-Farber Cancer Institute
    Edward J. Benz, Jr., M.D.
    Director

    450 Brookline Avenue
    Mailstop: BP332A
    Boston, Massachusetts 02115
    Tel: (617) 632-2100
    Fax: (617) 632-4452

    And

    David H. Koch Institute for Integrative Cancer Research at MIT
    Massachusetts Institute of Technology
    Tyler Jacks, Ph.D.
    Director

    77 Massachusetts Avenue, 76-158
    Cambridge, Massachusetts 02139
    Tel: (617) 324-3533
    Fax: (6170 324-2238

    I have heard good things about Dana Farber perhaps you could request that your husband's case be evaluated by someone there. It looks like both of them are about the same distance from you.


    Best Regards,

    Paul Adams
    Grand Blanc, Michigan

    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!

    My husband is still in the
    My husband is still in the Hospital. Today the performed a nerve block near the Anastomosis. We have been asigned a Pallative Doctor that has been wonderful. He told me today that there is a small leak in the Anastomosis. Has anyone on this board ever heard of this? The surgeon sugested to leave it alone, but I am requesting a second opinion.
    Thank you for all your support.
  • paul61
    paul61 Member Posts: 1,392 Member
    #8
    Helena50 said:

    My husband is still in the
    My husband is still in the Hospital. Today the performed a nerve block near the Anastomosis. We have been asigned a Pallative Doctor that has been wonderful. He told me today that there is a small leak in the Anastomosis. Has anyone on this board ever heard of this? The surgeon sugested to leave it alone, but I am requesting a second opinion.
    Thank you for all your support.

    "Leaving it alone" seems to be an odd approach
    I have heard of small leaks in the anastomosis but typically shortly after surgery not this long after surgery. If the surgeon wants to "leave it alone" is it his expectation that it will heal on it's own?

    I would certainly look for a second opinion on this one and not from a general thoracic surgeon but from a surgeon experienced in doing esophagectomies. It is great that they are making progress though, at least they understand the source of the pain. I assume the hallucinations were a side effect of the pain medication

    If they suggest a stent to cover the leak please come back here to discuss experiences with stents.

    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!
  • Helena50
    Helena50 Member Posts: 20
    #9
    paul61 said:

    "Leaving it alone" seems to be an odd approach
    I have heard of small leaks in the anastomosis but typically shortly after surgery not this long after surgery. If the surgeon wants to "leave it alone" is it his expectation that it will heal on it's own?

    I would certainly look for a second opinion on this one and not from a general thoracic surgeon but from a surgeon experienced in doing esophagectomies. It is great that they are making progress though, at least they understand the source of the pain. I assume the hallucinations were a side effect of the pain medication

    If they suggest a stent to cover the leak please come back here to discuss experiences with stents.

    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!

    Home from the Hospital
    My husband was released yesterday from the hospital. The doctors said that they can not do anything else for him. They are still not sure if he has a leak or the tumor is back. This week he will have a PET scan. Either situation is not good. He can not have surgery again thats not an option. Maybe chemo. I am hoping for the best. I just need answers. The doctors tell me that this is a very complex situation. After the PET scan I am planning to take him to Mass General for a second opinion.
    Paul, you have been a great support and I truly appreciate all your recomendations and words of wisdom.

    Helena Ferreira
    wife of Mario that is suffering.
  • Helena50
    Helena50 Member Posts: 20
    #10
    Donna70 said:

    sometimes the scans don't show the cancer
    Hoping this is not the case, but wanted to say sometimes the scans do not show the cancer or the Pet scan does not show uptake and you can still have cancer. My original PET scan when I was first dx'd did not show the 4 cm tumor or the positive node only the EUS showed the cancer after the positive biopsy after the original EGD. So hope the drs will try harder to see as Paul says what the problem is, you have to be persistent and insist that as they can see, your husband is getting worse and there must be a reason. So hoping they will find an answer for you and your hubby. take care,
    Donna70

    Donna,What is EUS and EGD? I
    Donna,What is EUS and EGD? I am not familiar with these terms.

    Thank you,
  • sandy1943
    sandy1943 Member Posts: 824
    #11
    Helena50 said:

    Home from the Hospital
    My husband was released yesterday from the hospital. The doctors said that they can not do anything else for him. They are still not sure if he has a leak or the tumor is back. This week he will have a PET scan. Either situation is not good. He can not have surgery again thats not an option. Maybe chemo. I am hoping for the best. I just need answers. The doctors tell me that this is a very complex situation. After the PET scan I am planning to take him to Mass General for a second opinion.
    Paul, you have been a great support and I truly appreciate all your recomendations and words of wisdom.

    Helena Ferreira
    wife of Mario that is suffering.

    Helena, I am so glad you are
    Helena, I am so glad you are seeking the second opinion. If it is complex, the doctors should be able to explain it to you. When a doctor says that's all we can do,it doesn't mean there's not a doctor that isn't more knowledgeble,

    Good luck, Sandra
  • NLMCEM
    NLMCEM Member Posts: 50
    #12
    Helena50 said:

    Home from the Hospital
    My husband was released yesterday from the hospital. The doctors said that they can not do anything else for him. They are still not sure if he has a leak or the tumor is back. This week he will have a PET scan. Either situation is not good. He can not have surgery again thats not an option. Maybe chemo. I am hoping for the best. I just need answers. The doctors tell me that this is a very complex situation. After the PET scan I am planning to take him to Mass General for a second opinion.
    Paul, you have been a great support and I truly appreciate all your recomendations and words of wisdom.

    Helena Ferreira
    wife of Mario that is suffering.

    Helena
    Helena you wrote, "After the PET scan I am planning to take him to Mass General for a second opinion."

    This is wonderful news that you are going to get the second opinion.

    Ask them for a copy of the Pet Scan (I recommend you ask for all test cd's and reports EVERY time) We get Nino's sent to both his local doctors also. He has a primary doctor and he also has his sent to his VA doctor. This way they have a better understanding when Nino comes in for a check up if he is having any new problems and they can compare the test.

    EC Fighter Caregiver,
    Carolyn
  • paul61
    paul61 Member Posts: 1,392 Member
    #13
    Helena50 said:

    Donna,What is EUS and EGD? I
    Donna,What is EUS and EGD? I am not familiar with these terms.

    Thank you,

    EUS vs. EGD
    Helena,

    An EGD is an "Esophagogastroduodenoscopy"; it is an examination of the esophagus, stomach, and and first part of the small intestine. It is done with a small camera (flexible endoscope) that is inserted down the throat. A small extension to the device also allows the doctor to take biopsies for later pathological examination.

    An EUS is Endoscopic ultrasound. (EUS) is a procedure used to image the digestive tract, including the pancreas. A thin, flexible, lighted tube with a small ultrasound probe attached to the end (echoendoscope) is passed through the patient’s mouth into the stomach and the top part of the small intestine called the duodenum. The ultrasound component of the endoscope uses sound waves to create visual images of the pancreas.

    In diagnosing and staging esophageal cancer; the initial diagnosis is usually done with an EGD. Then an EUS is typically done later along with a CT or PET scan to establish the extent the tumor has penetrated the layers of the esophagus and to look elsewhere in the body for potential cancer involvement.

    Both EGD and EUS are endoscopic examinations but the EUS provides more detailed information for cancer staging.

    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!
  • ShellyMac
    ShellyMac Member Posts: 16
    #14
    Helena50 said:

    Thank you so very much. We
    Thank you so very much. We are located in the Springfield Mass area. My husband is at Mercy Hospital. I appreciate any suggestions or recomendations.

    If traveling to Boston isn't
    If traveling to Boston isn't out of the question for you, Dr. Raphael Bueno at Brigham & Women's hospital is phenomenal. He performed my Esophagectomy last January and I trust him with my life! He can come across as being "quick and to the point" but he knows what he is doing.

    Good luck to you and please keep us posted on your progress.

    God Bless!

    Shelly
  • Helena50
    Helena50 Member Posts: 20
    #15
    ShellyMac said:

    If traveling to Boston isn't
    If traveling to Boston isn't out of the question for you, Dr. Raphael Bueno at Brigham & Women's hospital is phenomenal. He performed my Esophagectomy last January and I trust him with my life! He can come across as being "quick and to the point" but he knows what he is doing.

    Good luck to you and please keep us posted on your progress.

    God Bless!

    Shelly

    Pain is back
    We have an appointment with Dana Farber with Doctor Peter Enzinger next Friday 10/12/12.
    Yesterday my husband was in lots of pain again. Didn't want to eat, had a hard time moving standing. I don't know what else to do. He needs to be an out patient for 4 days to have a PET scan done otherwise I would take him back to the Hospital. He is taking Delaudid 5 MG every 4 hours and Fentanyl patch 125mcg.
  • Amjosmom
    Amjosmom Member Posts: 212
    #16
    Helena50 said:

    Pain is back
    We have an appointment with Dana Farber with Doctor Peter Enzinger next Friday 10/12/12.
    Yesterday my husband was in lots of pain again. Didn't want to eat, had a hard time moving standing. I don't know what else to do. He needs to be an out patient for 4 days to have a PET scan done otherwise I would take him back to the Hospital. He is taking Delaudid 5 MG every 4 hours and Fentanyl patch 125mcg.

    Here is a list of meds...
    You shouldn't wait with him in pain. Can you call the doc and ask them to up the pain meds? Maybe ask for morphine or oxycontin. Where is he experiencing his pain?

    This list was composed by several members of this board. Hopefully, it may help.


    Suggestions For Pain Relief
    Gabapentin (neurotin) bone mets
    Dexamethasone, bone mets...good appetite producer
    Adderall, great for energy booster, and focus, especially for
    Stage ivs
    Ritalin works too
    Jtube, godsend for nutrition, and hydration
    Oxycontin, for general pain
    Oxycodone, breakthrough pain
    Tramadol, pain relief
    Dilaudid for pain, short acting
    Morphine, better manages overall pain, not as loopy as the oxy's
    And helps with breathing issues and mets to the lungs.
    Please note some people may be resistant and have to
    Drugs to what works best to manage the pain.
    Intercoastal nerve block, for pain in vertebrate or ribs
    Ativan, calms nerves, but helps with swallowing too, helps with breathing
    Emend, great anti nausea drug...my opinion, works the best
    Zofran, anti nausea, close second
    Lorazapam, heavy hitter for nausea
    Compezine, nausea..didn't work for jim
    Magic mouth wash, for thrush...happens all the time...look at their
    Tongues for white patches...will give the nausea
    Antibiotic melt tabs, thrush
    Baking soda and water, thrush, baking soda and sakt rinse
    5 times per day.
    Therespheres, mets to liver
    Ginger supplements, helps with nausea a lot
    immodium, diarrhea
    Vegetable laxatives, for constipation...must be taken with all
    Narcotics
    Tincture of opium for diarrhea
    Fish oil, weight gain, works wonders...high epa, dha
    Iv hydration, saline but better is lactated ringers
    Exercise, push yourself...walk, walk and walk...use hand grips
    Try ec stretch before stent...stent should be last resort.
    To keep away neuropathy, bvitamins
    Easy foods to go down...high carbs...easy to digest, will make you
    Hungrier sooner....kraft mac and cheese...chinese lomein, etc
    Fruit smoothies with whey protein...add two scoops of whey
    To blender, add frozen fruit, yogurt, ice cream, milk or cream,
    Flax seed oil
    Loosely scrambled eggs, with cheese, bacon bits, salsa, etc...
    Panera soups, cream of anything
    Best friend, pressure cooker!...pulvarize soups...chicken, beef, add veggies,
    Whey protein, cream, and if needed, strain
    In beginning stages, stay away from sugar...new stage iv...empty
    Calories...will make you full quickly. Diabetic ice cream...
    Herbal tea, smoothe move, walgreens.
    L lysine during radiation and chemo to help with mouth sores

    Don't be intimidated by hospice...they help manage the pain better
    Then anyone else and will butt out if you don't want them to be there.
    Best meds, delivered at your door, free of charge
  • ptom
    ptom Member Posts: 41 Member
    #17
    Amjosmom said:

    Here is a list of meds...
    You shouldn't wait with him in pain. Can you call the doc and ask them to up the pain meds? Maybe ask for morphine or oxycontin. Where is he experiencing his pain?

    This list was composed by several members of this board. Hopefully, it may help.


    Suggestions For Pain Relief
    Gabapentin (neurotin) bone mets
    Dexamethasone, bone mets...good appetite producer
    Adderall, great for energy booster, and focus, especially for
    Stage ivs
    Ritalin works too
    Jtube, godsend for nutrition, and hydration
    Oxycontin, for general pain
    Oxycodone, breakthrough pain
    Tramadol, pain relief
    Dilaudid for pain, short acting
    Morphine, better manages overall pain, not as loopy as the oxy's
    And helps with breathing issues and mets to the lungs.
    Please note some people may be resistant and have to
    Drugs to what works best to manage the pain.
    Intercoastal nerve block, for pain in vertebrate or ribs
    Ativan, calms nerves, but helps with swallowing too, helps with breathing
    Emend, great anti nausea drug...my opinion, works the best
    Zofran, anti nausea, close second
    Lorazapam, heavy hitter for nausea
    Compezine, nausea..didn't work for jim
    Magic mouth wash, for thrush...happens all the time...look at their
    Tongues for white patches...will give the nausea
    Antibiotic melt tabs, thrush
    Baking soda and water, thrush, baking soda and sakt rinse
    5 times per day.
    Therespheres, mets to liver
    Ginger supplements, helps with nausea a lot
    immodium, diarrhea
    Vegetable laxatives, for constipation...must be taken with all
    Narcotics
    Tincture of opium for diarrhea
    Fish oil, weight gain, works wonders...high epa, dha
    Iv hydration, saline but better is lactated ringers
    Exercise, push yourself...walk, walk and walk...use hand grips
    Try ec stretch before stent...stent should be last resort.
    To keep away neuropathy, bvitamins
    Easy foods to go down...high carbs...easy to digest, will make you
    Hungrier sooner....kraft mac and cheese...chinese lomein, etc
    Fruit smoothies with whey protein...add two scoops of whey
    To blender, add frozen fruit, yogurt, ice cream, milk or cream,
    Flax seed oil
    Loosely scrambled eggs, with cheese, bacon bits, salsa, etc...
    Panera soups, cream of anything
    Best friend, pressure cooker!...pulvarize soups...chicken, beef, add veggies,
    Whey protein, cream, and if needed, strain
    In beginning stages, stay away from sugar...new stage iv...empty
    Calories...will make you full quickly. Diabetic ice cream...
    Herbal tea, smoothe move, walgreens.
    L lysine during radiation and chemo to help with mouth sores

    Don't be intimidated by hospice...they help manage the pain better
    Then anyone else and will butt out if you don't want them to be there.
    Best meds, delivered at your door, free of charge

    Amjosmom
    Ativan is the brand name for Lorazepam (generic). L lysine is good (herbal) but Zovirax (prescription) works much better for mouth sores.

    ptom
  • Amjosmom
    Amjosmom Member Posts: 212
    #18
    ptom said:

    Amjosmom
    Ativan is the brand name for Lorazepam (generic). L lysine is good (herbal) but Zovirax (prescription) works much better for mouth sores.

    ptom

    Thanks!
    I borrowed this list from a friend, but I will edit it with these changes. Thanks for the input.
  • Helena50
    Helena50 Member Posts: 20
    #19
    Amjosmom said:

    Here is a list of meds...
    You shouldn't wait with him in pain. Can you call the doc and ask them to up the pain meds? Maybe ask for morphine or oxycontin. Where is he experiencing his pain?

    This list was composed by several members of this board. Hopefully, it may help.


    Suggestions For Pain Relief
    Gabapentin (neurotin) bone mets
    Dexamethasone, bone mets...good appetite producer
    Adderall, great for energy booster, and focus, especially for
    Stage ivs
    Ritalin works too
    Jtube, godsend for nutrition, and hydration
    Oxycontin, for general pain
    Oxycodone, breakthrough pain
    Tramadol, pain relief
    Dilaudid for pain, short acting
    Morphine, better manages overall pain, not as loopy as the oxy's
    And helps with breathing issues and mets to the lungs.
    Please note some people may be resistant and have to
    Drugs to what works best to manage the pain.
    Intercoastal nerve block, for pain in vertebrate or ribs
    Ativan, calms nerves, but helps with swallowing too, helps with breathing
    Emend, great anti nausea drug...my opinion, works the best
    Zofran, anti nausea, close second
    Lorazapam, heavy hitter for nausea
    Compezine, nausea..didn't work for jim
    Magic mouth wash, for thrush...happens all the time...look at their
    Tongues for white patches...will give the nausea
    Antibiotic melt tabs, thrush
    Baking soda and water, thrush, baking soda and sakt rinse
    5 times per day.
    Therespheres, mets to liver
    Ginger supplements, helps with nausea a lot
    immodium, diarrhea
    Vegetable laxatives, for constipation...must be taken with all
    Narcotics
    Tincture of opium for diarrhea
    Fish oil, weight gain, works wonders...high epa, dha
    Iv hydration, saline but better is lactated ringers
    Exercise, push yourself...walk, walk and walk...use hand grips
    Try ec stretch before stent...stent should be last resort.
    To keep away neuropathy, bvitamins
    Easy foods to go down...high carbs...easy to digest, will make you
    Hungrier sooner....kraft mac and cheese...chinese lomein, etc
    Fruit smoothies with whey protein...add two scoops of whey
    To blender, add frozen fruit, yogurt, ice cream, milk or cream,
    Flax seed oil
    Loosely scrambled eggs, with cheese, bacon bits, salsa, etc...
    Panera soups, cream of anything
    Best friend, pressure cooker!...pulvarize soups...chicken, beef, add veggies,
    Whey protein, cream, and if needed, strain
    In beginning stages, stay away from sugar...new stage iv...empty
    Calories...will make you full quickly. Diabetic ice cream...
    Herbal tea, smoothe move, walgreens.
    L lysine during radiation and chemo to help with mouth sores

    Don't be intimidated by hospice...they help manage the pain better
    Then anyone else and will butt out if you don't want them to be there.
    Best meds, delivered at your door, free of charge

    Thank you for this
    Thank you for this information. His pain is in his lower back.He sits on the sofa crunched over all day and most of the night. He is taking 6 mg of Dilaudid. Has tried oxy's and other pain meds they only work for a short time.We are starting with Pallative care today. He is not eating or drinking much. He needs fluids so the I.V. will help with hydration and I will ask for morphine
    I'm always wondering if he is dying. Is this what people go through when they die of this cancer. It is so hard to deal. He gets frustrated with me when I suggest anything for example: food,fluids and even other positions to try to keep him comfortable.
    Currently taking: Dexamethasone, Ritalin, Ativan & Lorazapan.
  • Amjosmom
    Amjosmom Member Posts: 212
    #20
    Helena50 said:

    Thank you for this
    Thank you for this information. His pain is in his lower back.He sits on the sofa crunched over all day and most of the night. He is taking 6 mg of Dilaudid. Has tried oxy's and other pain meds they only work for a short time.We are starting with Pallative care today. He is not eating or drinking much. He needs fluids so the I.V. will help with hydration and I will ask for morphine
    I'm always wondering if he is dying. Is this what people go through when they die of this cancer. It is so hard to deal. He gets frustrated with me when I suggest anything for example: food,fluids and even other positions to try to keep him comfortable.
    Currently taking: Dexamethasone, Ritalin, Ativan & Lorazapan.

    Hospice
    If the docs are not efficiently managing his pain, then I suggest calling in hospice. They are excellent in pain management, free of charge and can get him a recliner that is more comfortable and easier for him to get up and down. That's what I would do, if it were up to me.

    Best wishes, Helena.
  • Helena50
    Helena50 Member Posts: 20
    #21
    Amjosmom said:

    Hospice
    If the docs are not efficiently managing his pain, then I suggest calling in hospice. They are excellent in pain management, free of charge and can get him a recliner that is more comfortable and easier for him to get up and down. That's what I would do, if it were up to me.

    Best wishes, Helena.

    update
    Took my husband to Faulkner Hospitalin Boston to meet with Doctor Peter Enzinger, oncologist for EC.
    The current oncologist agreed that a second opinion would be a good idea. The radiolegist at Mercy said there was a perforation in the stomach but the oncologist and other doctors said there was not. Doctor Enzinger said there was a perforation but it was contained. Since all records were not received in a timely maner Doctor Enzinger sent us home and requested a list of records from day one. He also wantes to do a endoscopy and get a biopsy to see if there is a tumor. It seems that all of these Doctors are unsure if there is a tumor or not. I pleaded with Doctor Enzinger to admit my husband to this hospital and do want he thought would be best to diognoci this very complex situation. He said to us " I just met you today where have you been in the last three months Untill I receive all the reports I can not do anything." Today I spoke with Doctor Podbielski the surgeon that operated and performed the surgery back in 2009. He is no longer associated with this case since he moved away from the area. He told me he would drive to Mercy hospital to look at the reports and PET scan. He did do all of this and called me to let me know that he does not believe there is a perforation and that the tumor has grown and is in the lemf nodes outside of the stomach which is the same location that it was back in November 2011 the reoccurrence. When my husband left the Hospital 10/9/2012 his oncologist said he has 6-12 months to live. We also found out that his tumor was 5cm in November 2011 and now its 4cm. We were also told by his oncologist back in February 2012 when all the radiation and chemo ended and a PET scann was done that the tumor had shrunk and there was only scar tissue left. It also has come to our attention that the tumor was 3cm in February and not just scar tissue. This has been a night mare for all of us. Now my husband is on pain killers and ivy fluids at home, he is eating very little and has become weaker and continues to loose weight. Doctor Podbielski is calling the Oncologist here in Springfield, Ma to discuss this issue tomorrow. He also feels that the best thing is Hospice to keep my husband comfortable. I hate this beast. I also feel I will always have doughts on the priognosis and if there was a leak or not.
    Thank you all for all your support.
    Helena

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