FreeBird's Journey:

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Lost Loved One: Pancreatic Cancer > Exocrine Tumor > Adenocarcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: over 5 years ago, Male, Stage IV

  1. 1
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Diagnosed

    Oh No

    The loved one I care for has been through skin cancer, survived non-small-cell lung cancer, and received the big "oh no" this year-- a diagnosis of stage IV adenocarcinoma of the pancreas and bile ducts, with metastases to the liver, which is where it was discovered after a routine scan for follow-up on the lung cancer. There is nothing like the feeling of sitting in the exam room with someone you love, after the emotional, physical and financial expense of battling lung cancer, and hearing that there's a new cancer with no good treatment options. http://www.lustgarten.org/document.doc?id=73 http://www.lustgarten.org/page.aspx?pid=634 http://www.cancer.gov/cancertopics/pdq/treatment/pancreatic/Patient/page1/AllPages http://www.cancer.org/acs/groups/cid/documents/webcontent/003131-pdf.pdf http://pathology.jhu.edu/pc/pledge.php http://www.mayoclinic.com/health/pancreatic-cancer/DS00357/METHOD=print

    0 Comments
  2. 2
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Pain medicine

    Drug or Chemo Therapy

    For pain management, they started with Morphine Sulfate, extended release, which is a wonderful drug that provided visible relief. For any additional pain, Oxycodone, immediate release was made available. After a while, this provided relief, but left him feeling doped up and drowsy. http://www.cancer.gov/cancertopics/coping/paincontrol2012 http://www.cancer.gov/cancertopics/pdq/supportivecare/pain/Patient http://www.cancer.gov/cancertopics/factsheet/Support/FS8_17.pdf http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/Pain/index http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/morphine http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/oxycodone

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The chemotherapy treatment is aimed mostly at palliative care for a stage IV pancreatic cancer, and extending survival for probably a short time. The drug used is gemcitabine (Gemzar), IV, that takes about an hour for him to complete each visit. First we check in, pay the co-pay, and sit in the waiting room. Then we move into another room where bloodwork and vitals are taken, and they monitor weight. Then we go see the doctor. Then we move into another big room for the chemo. So far, not too bad on the side effects. Very tired. With the pancreas and drugs involved, they also test blood sugar. How will they know if there is any progress at all? They will test the blood for a tumor marker called CA19-9. Prior to chemotherapy, this number was on the rise. http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you.pdf http://www.cancer.org/acs/groups/cid/documents/webcontent/003321-pdf.pdf http://www.cancer.org/acs/groups/cid/documents/webcontent/003025-pdf.pdf http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/treatment/Chemotherapy.php http://www.chemocare.com/bio/gemcitabine.asp http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/gemcitabine http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diagnosis/CA19_9.php

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  4. 4
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Nausea medicine

    Drug or Chemo Therapy

    The doctor prescribed Compazine at home for any nausea from chemotherapy. They explained that they give the drug Aloxi on the day of the chemo to help with nausea, and that it wears off after a few days. So, they like patients to have Compazine available at home just in case. Another drug they're using on the day of chemo is called Decadron/Dexamethasone, a steroid that helps with appetite for the first and second day. http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/index http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/palonosetron http://www.drugs.com/mtm/compazine.html http://www.cancer.org/Treatment/TreatmentsandSideEffects/GuidetoCancerDrugs/dexamethasone

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  5. 5
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Weight loss

    Side Effects

    There has been roughly a 10% loss of body weight, and some noticeable loss of lean muscle. update: In two or three months, about 18% loss of body weight, and additional visible loss of lean muscle in upper arms.

    0 Comments
  6. 6
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Eating problems (anorexia)

    Side Effects

    There is a loss of appetite, feeling full and bloated like you just finished a Thanksgiving dinner and couldn't eat another bite. So it has been difficult getting much nutrition in. Two things help somewhat with appetite on the day they occur. One is when he receives the steroid on the day of chemo. The other is on a day when he's able to have a good bowel movement, which is not often. Writing down the foods he eats and the fluids he drinks, helps to get a picture of how he's doing with eating and hydration. If you have any experience with how you handle nutrition without being able to eat much, please comment. http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diet_and_nutrition/index.php http://www.cancer.org/Treatment/SurvivorshipDuringandAfterTreatment/NutritionforPeoplewithCancer/index http://www.cancer.gov/cancertopics/pdq/supportivecare/nutrition/Patient http://www.cancer.gov/cancertopics/coping/eatinghints.pdf

    1 Comment
  7. 7
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Confusion

    Side Effects

    There is some confusion, but all-in-all, he has been doing well with this. I think part of it is just the sleepiness from all the meds.

    0 Comments
  8. 8
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Depression/Anxiety

    Side Effects

    It's been an emotional rollercoaster for dad and the family. Right now, one of the toughest things for him to cope with is that he can't exercise his independence to get up and do what he wants whenever he wants to do it. He's always been the one to help people.

    1 Comment
  9. 9
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Fatigue (tiredness)

    Side Effects

    He is experiencing a great deal of fatigue, without doing much.

    0 Comments
  10. 10
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    He did have flu-like symptoms, only two or three times so far. It lasted about a day. Fever, chills, sweats, a cough, congestion and shortness of breath.

    0 Comments
  11. 11
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    involuntary muscle movement

    Side Effects

    Mostly in his arms, he has sudden movements or tics.

    1 Comment
  12. 12
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    cold hands and feet

    Side Effects

    Cold legs, feet, and hands, that are ordinarily warm.

    0 Comments
  13. 13
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Swelling (edema)

    Side Effects

    swelling of feet and ankles

    0 Comments
  14. 14
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Pain

    Side Effects

    There is a lot of pain, that is being managed with medication. So it is not a constant pain. He has breakthrough pain periodically. If it starts to worsen, they up the medication dose. Most of the pain is in the upper right abdomen. Some right shoulder pain. A little back pain. The pain is usually worse when laying down. Before the medication, he described the pain as the worst he has ever felt-- including the pain from his operation.

    0 Comments
  15. 15
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    celebrating good days

    Celebration

    The prognosis for this disease, at this stage, is extremely poor, and there's not a XXX thing I can do about it. A good day is a day when we can laugh together and talk about something other than cancer or whether he had a poop today, when he has an appetite, and is able to walk around with a little less effort, when visitors come take his mind off things, and when he's comfortable. I tell him I love him, and he tells me he loves me-- sometimes at 2:00 in the morning talking about worries. It hasn't always been perfect, but I feel lucky to have him for a father. That's something that I have to celebrate.

    2 Comments
  16. 16
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Money

    Oh No

    Cancer is expensive, even when there is help from insurance. In many cases, your ability to produce an income drops off at the same time expenses start to climb. Cancer of the wallet. We've had co-pays for medication that keeps changing, over-the-counter medication, doctor visits, emergency room. Over the past two years, in addition to his other chronic health issues, dad was hit with lung cancer first, before the pancreatic cancer. There was surgery, hospital for pneumonia, chemotherapy. At one point I tried to keep track of the transportation with the hospital visits, chemotherapy, countless doctor visits, outpatient scans, biopsies, pharmacy, blood lab, and so on. But it adds up to weeks of driving- back and forth, back and forth. Add in living expenses, and after a while the credit cards are busting at the seams, and you start to worry about all the debt that piles up. He thinks about that as much as anything else. I have no insurance for myself. So, as a caregiver, I think about eating right and remembering to get sleep so I can stay healthy. I'm sure that's on the mind of many of you or your families too. With the economy the way it is, even the public parks around here have started to charge. The best money spent was for the internet, that has opened up a world of information that the doctor doesn't have time to explain, helped to save money, and helped to share experiences with other people.

    0 Comments
  17. 17
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    hoarse voice

    Side Effects

    This comes and goes.

    0 Comments
  18. 18
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Constipation

    Side Effects

    After trying various recommended laxatives, a daily regimen of MiraLax (polyethylene glycol 3350) + a store brand of Senokot has worked after about 4 days, to have a normal bowel movement. http://www.drugs.com/mtm/miralax.html http://www.drugs.com/cdi/senokot.html

    0 Comments
  19. 19
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Sleep disturbances

    Side Effects

    Dad wakes up usually twice during the night, with pain or just because he can't sleep. That may be partly because the fatigue causes him to take frequent naps during the day. The pain seems to worsen when laying down. Oxycodone helps with that, and then he usually sleeps it off in the recliner. update after round 1, treatment 3 chemo-- He has more trouble sleeping through the night.

    0 Comments
  20. 20
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Anemia (low red blood cell counts)

    Side Effects

    RBC, WBC and platelets have dropped low from the Gemzar chemotherapy. First cycle, week 3. http://www.chemocare.com/managing/low_blood_counts.asp

    0 Comments
  21. 21
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Low platelet counts (thrombocytopenia)

    Side Effects

    (RBC, WBC and platelets have dropped low from the Gemzar chemotherapy. First cycle, week 3.) http://www.mayoclinic.com/health/thrombocytopenia/DS00691/METHOD=print http://www.chemocare.com/managing/low_blood_counts.asp

    0 Comments
  22. 22
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    (RBC, WBC and platelets have dropped low from the Gemzar chemotherapy. First cycle, week 3. )

    0 Comments
  23. 23
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neupogen to be given after first round of chemo. for the pancreatic cancer.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  24. 24
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Rash

    Side Effects

    Rash on lower legs, with a little bleeding. It started off just looking like a few insect bites. Now it is spreading. Add it to the list of things to figure out. update: The intervention for this was antibiotics to prevent infection, recommendation for probiotic to keep away the antibiotic-associated diarrhea, and a drive across town for a venous doppler ultrasound test to check for blood clots in the legs. They also recommended to elevate his legs when sitting down to reduce swelling in the ankles, which may be part of the cause. update: Approximately 1 week after the beginnings of the rash, it covers the lower legs and looks like a bad sunburn. Doctor tomorrow. update: He received more antibiotics. However, I believe the rash was related to his low blood platelets. Looking at his blood counts, the rash coincided with the drop in platelets, and disappeared when the platelets returned to normal range. It was identical to rashes I looked at online, that were caused by thrombocytopenia, or low blood platelets.

    0 Comments
  25. 25
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    platelet transfusion

    Other Care

    Oncologist discussed the probability of a blood platelet transfusion, for low blood platelets, coming up soon. http://www.cancer.org/acs/groups/cid/documents/webcontent/002989-pdf.pdf http://www.nlm.nih.gov/medlineplus/ency/article/000556.htm http://www.nlm.nih.gov/medlineplus/bloodtransfusionanddonation.html update: platelet count not bad enough, so no transfusion at this time.

    0 Comments
  26. 26
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Nausea/Vomiting

    Side Effects

    Two days after third chemotherapy treatment with Gemzar, he is experiencing nausea. http://www.cancer.org/acs/groups/cid/documents/webcontent/003200-pdf.pdf http://www.cancer.gov/cancertopics/pdq/supportivecare/nausea/Patient/page1/AllPages

    0 Comments
  27. 27
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Confusion

    Side Effects

    After round 1, week 3 chemo with Gemzar, he is experiencing additional confusion in which he drops off mid-sentence, a few hallucinations where he saw people standing in front of him who are not there, and extra fatigue. Between the cancer, pain meds, the chemo, and the dropping blood counts, I'm not sure what causes this.

    0 Comments
  28. 28
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Dehydration

    Side Effects

    A little dehydrated. Another trip to the cancer center for doctor and IV fluids. They do this to head off a trip to the hospital if it gets too bad. He looked and felt much better after the fluids.

    0 Comments
  29. 29
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Pain

    Side Effects

    Increase in pain- upper right abdomen, side, and back. The pain is worse when laying down. Slight increase in meds to manage pain.

    0 Comments
  30. 30
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    CT or CAT scan

    Other Care

    CT, or CAT Scan This is a scan commonly used to take a picture of your insides when you are receiving standard cancer care. It's not the first time dad has been through this. This time, a problem was detected on an x-ray for another doctor, so they want to take a better look with this scan. http://www.mayoclinic.com/health/ct-scan/MY00309 http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/ImagingRadiologyTests/imaging-radiology-tests-ct http://imaging.cancer.gov/patientsandproviders/cancerimaging/ctscans http://www.nlm.nih.gov/medlineplus/tutorials/ctscan/htm/video.htm http://www.cancer.gov/cancertopics/factsheet/Detection/CT The day before, there's a phone call reminding us of the appointment and explaining not to eat or drink before the test. On arrival, we filled out another form. Get used to writing the same information over and over when going to the doctors. I find it helps to keep a notebook with all of the information you need together in one place-- list of medications, list of doctors, list of previous surgeries and current health issues, any insurance numbers, social security number, phone number and address (you'd be surprised how you can draw a blank on this when you're tired), and your preferred pharmacy location in case they want to send the prescription directly. Then there was an injection of contrasting iodine. Then the scan. The whole appointment took about a half hour.

    0 Comments
  31. 31
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Hospital for biliary drainage tube procedure

    Procedure or Surgery

    There is a leak or blockage of the bile from the liver, that is causing significant problems and additional pain. So in this procedure, and what is expected to be a brief hospital stay barring any complications, an "interventional radiologist" will insert a tube/catheter into the liver to drain the accumulated fluid. http://www.radiology.ucsf.edu/patient-care/sections/ir update: this has turned into a longer hospital stay, and more complicated procedure than anticipated. It looks like maybe a week. update: The hospital stay was 8 1/2 days.

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  32. 32
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    used wheelchair gift

    Other Care

    Grateful to a man in our town who gave us a wheelchair that he no longer needs. I bet this country is full of garages with unused wheelchairs in them. Make use of the online want ads as a resource. This is going to be a big help getting dad around, and maybe getting him out to enjoy a change of scenery if he feels up to it.

    3 Comments
  33. 33
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Nuclear Medicine

    Other Care

    Hepatobiliary Iminodiacetic Acid (HIDA) scan http://www.mayoclinic.com/health/hida-scan/MY00320/DSECTION=what-you-can-expect Due to blockage or damage in the liver, they are draining bile and using this test to see what's happening inside the liver with the production and transport of bile from the liver to the small intestine. This was a long, uncomfortable test where he had to lay still for about 1 1/2 hours while the bile traveled.

    1 Comment
  34. 34
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Possible chemotherapy-induced peripheral neuropathy in the feet. Dad has been feeling a stinging sensation in his feet. http://www.cancer.org/acs/groups/cid/documents/webcontent/002908-pdf.pdf

    0 Comments
  35. 35
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Home care

    Other Care

    Home care nurse visit. She was very good, and we found out she can even draw the blood for the bloodwork so we don't have to travel.

    0 Comments
  36. 36
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Continue or stop chemotherapy

    Decision Point

    Dad is pretty certain that he does not want to continue with chemotherapy. He doesn't want to spend the good time he has left feeling crappy. My concern is not knowing what to expect, and we both want the softest landing-- the path of least suffering, with the most quality of life. Chemo with gemcitabine may shrink the tumor, but it is not curative, and comes with a bag of unpleasant side effects. Although, I'm not sure how many of those side effects were caused by the chemo, or how many were caused by the complications of the liver biopsy.

    2 Comments
  37. 37
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Weight loss

    Side Effects

    17% loss of body weight in about 2 months. One indication of the volume of fluid he was holding, is a 30 pound drop during a relatively brief hospitalization in which he was eating much better simply because that pressure was relieved, as well as pain. Water weighs roughly 8.3 pounds per gallon, which if it was only water would equate to 3.6 gallons.

    1 Comment
  38. 38
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Home sweet home.

    Celebration

    Happy to be settled in at home, and everything is relatively stable. Nobody move. Good appetite. Working on walking a little more, which has paid off in becoming more stable and able to walk farther. Blood pressure looks better. It would be good to have a few weeks in a positive direction. We'll take what we can get.

    0 Comments
  39. 39
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    blood lab results

    Oh No

    Rising CA19-9, the tumor marker for pancreatic cancer http://labtestsonline.org/understanding/analytes/ca19-9/tab/test http://www.pancan.org/section_facing_pancreatic_cancer/learn_about_pan_cancer/diagnosis/CA19_9.php I hoped to see it move in the opposite direction following a round of chemo. But I guess it's not possible to say how much higher it would have been without the chemo. It's horrible not knowing whether chemo does any good, because he can at least feel a little better without it.

    3 Comments
  40. 40
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Money

    Oh No

    August, 2012. The running total for known medical expenses for the year, for just medical and prescriptions, not including all related expenses, is over $126,000. That's only what shows up in the paperwork so far. Most of the activity was from May-August. Thank goodness for insurance taking care of a big chunk of that. How do people without any insurance possibly deal with cancer? It's expensive even with it.

    4 Comments
  41. 41
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    continue treatment, or Hospice

    Decision Point

    Dad has decided for the time being to continue with chemotherapy if possible or practical, and see what happens from there. He has his ups and downs, but overall is feeling fairly good right now. A rest period was helpful. His swelling has mostly disappeared, and he is able to eat healthy. The pain situation is stable. It's good to see him relieved. So much so, that I wish he didn't have to go through the chemo side-effects again.

    0 Comments
  42. 42
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Cancer is shrinking

    Celebration

    After consultation with the oncologist, tumor shrinkage was reported in the secondary liver cancer, despite higher CA19-9 tumor marker results, indicating that it has been responsive to chemotherapy with Gemzar/gemcitabine. This gives a green light to continue with chemotherapy.

    0 Comments
  43. 43
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Back to chemotherapy. Gemzar, or gemcitabine. Cycle 2. We'll see what happens. http://www.drugs.com/gemzar.html

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  44. 44
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Weight loss

    Side Effects

    In about 3 1/2 months, dad has lost 19% of his body weight, and continues to lose despite eating exceptionally well during the past few weeks. I am hoping that his appetite sticks around during chemo, if not for weight maintenance, at least to be able to enjoy the food he likes.

    1 Comment
  45. 45
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Nausea and constipation

    Side Effects

    Once again, on the third day the side effects of chemotherapy started. Not too bad. Some nausea and constipation. Nausea is managed at home with compazine, and constipation dad has learned to manage with MiraLax (Polyethylene glycol 3350) and Senokot (store brand version of it- Senna).

    3 Comments
  46. 46
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Low white blood cell counts (neutropenia)

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  47. 47
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Fall

    Side Effects

    He has a little difficulty with balance and strength again. It seems to be more associated with the chemotherapy, because he was doing well for a few weeks. But he also has other chronic health issues. He had a little fall. But he's okay. Update: continuing pain from the fall. Probable broken rib. Not much he can do for that except wait and treat the pain. The pain from the fall is masking the other pain in his side, making it impossible to track that new pain.

    0 Comments
  48. 48
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    CAM (Complementary and Alternative Medicine)

    Other Care

    This person has yet to add any details about this experience.

    0 Comments
  49. 49
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Cold body, especially feet

    Side Effects

    After the second chemo session of the second cycle, out came the flannel shirt and blanket. Dad had this last time also. No fever. He just feels very cold, and it lasts a few hours a day. At this time, fatigue is also an increasing problem. He can exert himself for a short time, then becomes very tired and has to sit down. So, there is a decreasing mobility. He is still on chemotherapy, three weeks on-- one week off. Gemzar/gemcitabine.

    2 Comments
  50. 50
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Pain

    Side Effects

    Overall, the pain has improved. Following 5 chemo sessions, and the procedure to drain fluid from the liver, the pain in his upper right abdomen has decreased to where he no longer uses the oxycodone. He uses morphine. There is a new pain on the left side. We have to see what happens over time. Bloodwork showed the sugar, kidneys and liver are still in the normal range. He'll take results like that every month.

    3 Comments
  51. 51
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Skin changes

    Side Effects

    Thrombocytopenic petechiae and purpura. Development of what appears to be a rash, probably caused by low blood platelets. Itching. Extreme skin dryness and flaking, arms and legs

    0 Comments
  52. 52
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    Bleeding

    Side Effects

    Nosebleed (low blood platelets) Other minor bleeding.

    0 Comments
  53. 53
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    MILESTONE

    Celebration

    Passed three months since preliminary diagnosis. Knock wood, he is doing fair, despite some problems. To be honest, I think 21st century standard of care for stage IV pancreatic or biliary cancers stinks. It has so far caused more problems than it has solved, and costs are incredible. I am hoping and looking forward to real breakthroughs in cancer care for all people who go through it in the future.

    1 Comment
  54. 54
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    about 5 years ago
    FreeBird's Avatar

    celebrating good people

    Celebration

    We are grateful for excellent, skilled, and experienced nurses who have really put the "care" part into health care.

    0 Comments
  55. 55
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Third series of chemo, side effects earlier than usual

    Side Effects

    We have reached the third series of gemcitabine chemotherapy, that has been given on a planned schedule of three weeks on, one week off, with breaks when necessary for other health issues. Nausea arrived earlier and worse than usual-- but managed with Compazine meds. Decreased appetite due to the nausea. Early appearance of petechiae on arms. Dad's comment was that this is the worst round of chemo so far, as far as the way he feels. Some additional pain has popped up, across his upper abdomen. On weeks when he is not on chemo, he feels really good.

    3 Comments
  56. 56
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Good days

    Celebration

    Celebrating good days. Dad was able to move around well today, strong and without the oxygen tank.

    0 Comments
  57. 57
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Home caregiving and self-care: First Aid to First Care

    Other Care

    I found this chemotherapy side effects worksheet on the American Cancer Society website http://www.cancer.org/Treatment/TreatmentsandSideEffects/TreatmentTypes/Chemotherapy/index (6th item down on the list), added a few items to help track blood pressure, pain, and other side effects. This type of system works well to stay aware, and keep track of any side effects experienced during chemotherapy. A chart or calendar where you can keep all that data in one place, is better than relying on memory or scraps of paper when you go to speak with your health care team.

    0 Comments
  58. 58
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Low platelet counts (thrombocytopenia)

    Side Effects

    Chemotherapy postponed due to low blood platelets. http://www.cancer.org/Treatment/TreatmentsandSideEffects/PhysicalSideEffects/DealingwithSymptomsatHome/caring-for-the-patient-with-cancer-at-home-blood-counts http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/understanding-your-lab-test-results http://labtestsonline.org/understanding/analytes/cbc/tab/sample http://www.mayoclinic.com/health/first-aid-nosebleeds/HQ00105 If your blood platelets drop low, and you are on blood thinners such as aspirin, be sure to bring this up with your doctor.

    0 Comments
  59. 59
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    PET/CT scan combo Buy One Get One special

    Other Care

    http://www.cancer.org/Treatment/UnderstandingYourDiagnosis/ExamsandTestDescriptions/ImagingRadiologyTests/imaging-radiology-tests-nuc-scan http://imaging.cancer.gov/patientsandproviders/cancerimaging/nuclearimaging http://www.radiologyinfo.org/en/info.cfm?pg=pet Approximately 4 months have passed since the preliminary diagnosis. Since the CA19-9 tumor marker for pancreatic cancer has been increasing monthly for dad, and he is experiencing additional pain as well as a little swelling in the upper right abdomen, the side of the liver, the oncologist has ordered the PET/CT scan combination to attempt to see if chemotherapy with Gemzar/gemcitabine is working, and to determine what is happening with regard to the additional pain. There is a sugar fast the day before the scan-- no bread, pasta, potatoes, fruit, or anything else with sugar, and nothing at all to eat or drink 6 hours before the scan. A radiologist will interpret the results, and make a report for the doctor. This report will include a description of any tumors and their size. Be sure to get a copy of these reports as they become available. The treatment schedule up to this point was to have once-a-week chemo with Gemzar/gemcitabine, three weeks on, and one week off. On the off week, there is a visit for blood tests-- complete blood count, and a complete metabolic profile. Once a month for CA19-9 tumor marker test. Chemo has been interrupted by a hospital stay, and a couple delays from low blood platelets that has caused one nosebleed, and what looks like a skin rash once severely on the lower legs with swelling, and then twice lightly on the arms. So, at this point there have been seven chemo infusions for this cancer.

    0 Comments
  60. 60
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Fever

    Side Effects

    Monitoring a fluctuating 103 degree fever, chills, a little more congestion than usual, and cold-like symptoms. Despite being fastidious in daily disinfecting of surfaces, handwashing, using fresh clean cups, using masks if necessary, even wiping grocery carts, it's impossible to keep all the little buggers away all the time, when life goes on as it should. I am hoping this is not a cold or flu. Colds have been going around here. No chemotherapy this week anyway.

    0 Comments
  61. 61
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Where to go now.

    Decision Point

    It appears that the first line of chemotherapy for dad's cancer-- Gemzar or gemcitabine-- has failed at this point. The PET/CT scan showed an increase in tumor size, as well as a couple other potential new problems. It's upsetting, disappointing, but not a surprise as this is usually what happens. We will visit the oncologist for a more thorough interpretation of the report, and figure out what is happening. Then comes a probable decision about Hospice care, or trying other options..

    2 Comments
  62. 62
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Fork in the road- end of October 2012

    Decision Point

    There are currently no known cures for pancreatic cancer, and very few treatment options available for stage 4. After failure of Gemzar (gemcitabine) dad is faced with limited options: 1. Clinical trial with Xeloda (capecitabine)-- an oral 5-FU pro-drug, and another drug that may be a placebo. 2. Second opinion from a specialist with a lot of experience with pancreatic cancer, for a fresh perspective, and to double check everything to date. I have contacted helpful resources to find doctors with the most experience in this type of cancer. The most helpful was the Pancreatic Cancer Action Network. pancan.org 3. Quit all treatment and continue with the doctor for palliative care, letting the disease run its course. 4. Choose Hospice care and prepare for end-of-life as comfortably as possible. I have visited Hospice and picked up some materials to look over... as well as their little booklet for caregivers. 5. Something unknown that we haven't yet considered. If you have any ideas, I am listening. I have looked at a lot of Complimentary and Alternative Medicine, and nothing looks all that promising. Many claims, but nothing solid to back them up.

    4 Comments
  63. 63
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Stop treatment.

    Decision Point

    Today is November 1, 2012-- the beginning of what they (whoever they are) are calling Pancreatic Cancer Awareness month. Dad has decided to not continue with any further treatment, given the lousy options available at this point in time, and what horrible side effects would be stacked onto his experience in return for not very much gain. He made an evaluation that, for him, the quality of time he has left is more important to him than the quantity. Everyone is different. He will continue with palliative care to manage pain, deal with symptoms as they arise, and be as comfortable as possible during the rest of our journey together. I'm not sure that he's ready to say yes to Hospice yet, but we will either go that route or continue with the doctor for the time being. It is tough. The same standard of care chemo drug has been used since the 90's for this. Before that, from what I understand, they used what is basically the same as the 5-FU pro-drug he would be getting next. They play with combinations of these with other drugs, but there's nothing earthshakingly new and wonderful. You better hope that in the next ten years before they tell you that you have stage 4 pancreatic cancer, there's a better understanding and better treatments for this horrible disease. Treatment is crude, torturous, overpriced, poorly delivered, and absurd-- with very little to show for it at the end. Sometimes it costs almost as much to go to the bathroom as it does to eat. Between just the one cancer and brief hospitalization, the price tag was huge. Thank goodness for the help of insurance. The amount they said the tumor shrank earlier on was wrong. They pointed to the wrong number. I eventually figured that out because I paid attention and kept thinking about it. I was able to determine that there was some shrinkage. So the error did not matter, except it really got our hopes up when we saw it shrinking so dramatically. I hope one day soon no one ever has to go through this ever again. In 60 years, I hope your great great grandchildren look back on the things they did to treat cancer today as an absolute joke in the way we look at bloodletting in barber shops of the past. Science is slow, and pancreatic cancer is fast. I understand and respect people who keep on fighting with everything they have, every technique available. You are tough sons a guns. But it's equally courageous to know when you've had enough. I love my father, I'm thankful, respect his decision, and set as my goal to do everything I can to help land the plane softly. Sooner or later, we all face the inevitable. All of us. It almost never comes at a convenient time. We all try to put it off as long as possible. Different cancers have taken the lives of my father's father and mother, and his sister. Yet, I also had a cousin who suddenly died of an aneurysm without warning, and we all come from a very long line of people who are no longer alive. No amount of money, no amount of big fancy hospitals, doctors with their expensive cars, impressive machines-- nothing is going to change the fact that we are all going to die. That's where medicine ends, and philosophy (or faith) steps in. For now, we will take it one day at a time, and keep open minds about anything else that may come to our attention. Except for the pain, that's managed with medications to the point of comfort, he feels much better without the chemotherapy.

    5 Comments
  64. 64
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Living Will, Health Care Surrogate appointment, and (DNR) Do Not Resuscitate order

    Other Care

    We have reviewed and discussed Dad's living will and appointment of a health care surrogate in the event he is unable to make his own decisions, and provided copies of those to his doctors. Dad has also signed, and had his doctor sign a do-not-resuscitate order, that in Florida I understand is revocable at any time simply by ripping it up. One of those legal things, in Florida: the law states it must be printed on yellow paper. We have done these things to help ensure that his will is carried out with regard to his health care, and to make it clear to everyone that it's what he wants. We have discussed the DNR order with his primary doctor, and clarified that there are gray areas where we may not want it to be carried out.

    0 Comments
  65. 65
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    almost 5 years ago
    FreeBird's Avatar

    Mood changes

    Side Effects

    This person has yet to add any details about this experience.

    0 Comments
  66. 66
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    Dad has made a decision to start Hospice after his next doctor appointment. From my understanding, all they need is an order from the doctor, then they take it from there. It has been seven months since his preliminary diagnosis of pancreatic adenocarcinoma.

    1 Comment
  67. 67
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    A decision was reached about Hospice care. We discussed with the oncologist other options, such as resuming chemotherapy with 5-FU, oxaliplatin, and leucovorin based on a journal report from trials in Torino, Italy on this combination used for second line treatment. We also discussed a possibility that I brought up at an earlier time, visiting another specialist for options such as radiofrequency ablation, chemoembolization, radioembolization, and so on. Dad has decided that, because he feels much better without treatment, and that the prognosis really doesn't change much, that his quality of life is more important than quantity of life and all of the unknowns of outside-the-box procedures. Hospice care begins.

    1 Comment
  68. 68
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Ciprofloxacin- antibiotic

    Drug or Chemo Therapy

    Cipro was prescribed after dad started hearing singing during the night. The doctor explained that sometimes if there's a kidney infection, this can cause this kind of thing.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  69. 69
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    Dad is holding a lot of water, and experiencing swelling in his lower legs and ankles. There is a rash similar to the last time his legs swelled, but not as severe-- what they call petechiae, or little red dots. What Hospice is doing for this is trying two different diuretics to try to get rid of some of that fluid, and they added potassium. There is an increase in pain in the upper right abdomen, across the bottom of the rib cage, about 3/4 the way across to the left side. Morphine was increased, and since starting hospice has been given three times a day on a schedule instead of twice. You can visibly see, and feel, a swelling right below the ribs where the liver is apparently larger than normal. Very tired, and sleeping more often during the day. Still taking one day at a time.

    0 Comments
  70. 70
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Other

    Symptoms

    Hiccups: Hiccups started recently as just occasional. Now they last for hours, even through the night. Also had a little problem last night, became disoriented and shaky during the night, with nausea and vomiting. There were jerking movements. A nurse commenting here on whatnext, Carm, commented that these may be what are called myoclonic jerks, maybe from the recent increase in morphine. This is the first time he has vomited, even through his treatments. What we have here to manage nausea is Compazine. Good idea to have a bucket readily available, because it is not fun to clean up. He was improved in the daytime, except for the hiccups. I have no idea where the hiccups came from all of a sudden. In looking around, I saw some people online mention hiccups with cancers in the liver. Is it a common thing? I know it's common when on chemotherapy, which he is not doing now. Update: chlorpromazine prescribed for hiccups that don't want to go away.

    0 Comments
  71. 71
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Issues from the liver damage

    Symptoms

    The problems are starting to add up now. Dad is having some hearing difficulties, blurred vision, acts as though he is a little intoxicated, weak, unable to hold onto things without dropping them, hiccups that have lasted about six days so far, his arms jerk frequently, which someone here on whatnext said sounds like "myoclonic jerks," he's getting frustrated, starting to say things that do not make sense, talks through the night in his sleep, and sleeps frequently. Very tired. Appearance-wise, he looks like someone looks when they're extremely tired. They recommended some electrolyte drinks in case he is dehydrated from the diuretics. He lost over ten pounds since starting the water pill, and his swelling decreased in his legs. The pain is still well managed, and mostly felt upon waking up in the morning, Pain in the right shoulder, right upper back, and right upper abdomen. He is still eating well. It has been almost ten months since the preliminary diagnosis, and he started Hospice in January. He is starting just now to not be able to do as much for himself. http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/patient/page1/AllPages#Keypoint8 http://www.mayoclinic.com/health/myoclonus/DS00754

    3 Comments
  72. 72
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    Okay, having many things go wrong at this point, regarding breathing issues, and problems that appear to be related to the liver disease from the secondary tumor, or whatever else is going on in there since the last scan. Managing one thing at a time to the best of my ability with the advice of Hospice. Pain is still well managed. Had a sudden high fever, vomiting, and what appeared to be a seizure. He has periods where he is very alert and even joking. Ups and downs. I have called Hospice twice for emergency, and they were very good about responding. There is a triage nurse who answers the phone, gives instructions for what to do until another nurse is able to arrive.

    4 Comments
  73. 73
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    symptoms presumably from the big tumor in the liver

    Symptoms

    At this point, 10 1/2 months after diagnosis, dad is dealing with at least a growing tumor in his liver. Here are some of the things going on physically: --Swelling of feet, ankles, and lower legs, feeling bloated, and water retention. They manage this with diuretics. When he retains fluid, there's a dramatic increase in body weight. --Very tired and fatigued, sleeps often during the day. This is the problem that doesn't seem to go away. --Sometimes unsteady on his feet, with several falls. Managed as well as possible with mobility devices and fall prevention. --Had one high fever, with a seizure. --Pale stools, and darker than usual urine. --Managing constipation with medication to prevent the morphine from slowing things down. This has also helped to prevent hemorrhoids. --Pain, managed very well with morphine. --Occasional nausea and vomiting, controlled with medication. --Increased salivation that once in a while will just pour out of mouth and nose, particularly when he experiences nausea. --Coughing up phlegm. --Once in a while he will get the shivers, and suddenly start to jerk. The jerking has been called myoclonic jerks. He suddenly jerks backwards, or his arms jerk, and he drops his drink or throws it. -- Frequent hiccups. It appears that this is brought on by the space in the abdomen filling up by the tumor, which pushes the liver up toward the diaphragm. Sometimes eating brings it on, and I think perhaps when he starts to retain fluid, this also pushes up. Both of these recent times were when the hiccups flared up. --Unable to eat much without discomfort and feeling full. There is medication to help push that food through and empty out the stomach. This week he hasn't eaten much. If he feels like it, he'll drink a nutrition drink that I try to make as dense in nutrients as I can without increasing the volume too much. --Some sleep difficulties. --Blood pressure fluctuates. It was very low, then it goes way back up. --Occasional chest pain that is managed with medication, and oxygen. --There's a noticeably large bulge in his right upper abdomen from the liver. That's where most of the pain is. Some pain in the back on the same side. --He had a urinary tract infection, and a lung infection, both managed with antibiotics. --There was some hallucination, but overall not much. He has unusual dreams at night and at times talks loudly in his sleep. Doctor said these are normal things that they see. --Once in a while there are periods of breathlessness where he feels he cannot catch his breath. Generally this happens with the nausea. He has a rescue inhaler from his previous lung problems that helps to bring this under control, in addition to the oxygen. --blurred reading vision from the medication. It's a rollercoaster ride. He has some very good days, then not so good days. So if you're reading this and feel overwhelmed by it, I want you to know that it didn't all happen at once, and there have been breaks-- days that are very comfortable and worth living. Sometimes weeks. I think the most difficult thing for dad is the loss of independence. He liked to get up and do things, but now is tied to the house mostly. It's frustrating. Looking forward one day at a time, enjoying family, and making the most of good days.

    1 Comment
  74. 74
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Update on symptoms

    Symptoms

    "Hepatic encephalopathy." This is what they think is going on with the recent set of symptoms. It's caused by the accumulation of toxins in the bloodstream that are ordinarily removed by a healthy liver. This means there is probably a progression of the liver disease from the secondary cancer in the liver. There are two new drugs to take, that may help remove some of the toxins from the bloodstream, plus diuretics to help reduce the fluid build-up. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001347/ http://www.liverfoundation.org/abouttheliver/info/hepaticencephalopathy/ http://www.merckmanuals.com/home/liver_and_gallbladder_disorders/manifestations_of_liver_disease/hepatic_encephalopathy.html

    0 Comments
  75. 75
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Diarrhea

    Side Effects

    The new medication for hepatic encephalopathy works as a laxative. So we backed off the other laxatives due to diarrhea. There is also a remarkable decrease in the desire or ability to eat during the past week. Appetite returns when the swelling decreases, but he feels full after eating small portions. There is also, with this new problem a difficulty swallowing. We're trying to prepare softer, easier to swallow foods when he feels like eating. I suggest trying nutrition drinks, and he has had a couple of those. It's difficult to not push food, but this is what I've read-- that you should not push food. I make it available, in the best form for him to be able to eat, ask him what he feels like eating, remind him when he last ate, and make a note of what he's eating or drinking.

    0 Comments
  76. 76
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Nausea and vomiting

    Symptom Management

    Something new to get ahead of the nausea and vomiting. ABHR gel-- Ativan, Benadryl, Haldol, Reglan

    1 Comment
  77. 77
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Time since diagnosis

    Milestones

    This week marks 11 months since dad's diagnosis. In June 2012, he was given six months, maybe a little longer with chemo, to live. The median survival for people with stage 4 pancreatic adenocarcinoma who receive Gemzar-only chemotherapy is 6.8 months. The past several weeks have been the most difficult in terms of quality of life, because of the effects of the tumor in his liver. The hospice doctor said they think he has more problems with his liver now, and he's probably going to see more of these episodes more frequently from this point. We have a great tool kit of drugs from hospice to try to manage all of these symptoms.

    0 Comments
  78. 78
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    anorexia-- loss of appetite

    Symptoms

    Dad has eaten very little this week. This is normal for this stage. But they have prescribed a steroid to help with appetite. It worked after the first pill. He has eaten two small meals today. So we'll see how it goes. Diarrhea has been difficult with the prescription for the liver problem. At this point, there are so many drugs that it's difficult to manage them all.

    0 Comments
  79. 79
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    I have a sense that we are nearing the end of the journey in the coming days or weeks. At this point, there is a lot going on, and a longer period where dad is not improving, which is unusual over the course of the journey. I'm seeing many of the things described in literature for the final days or weeks. Hospice is trying new things to keep dad comfortable, and manage symptoms. To this point, the pain is extremely well managed, and is the least of the problems right now. http://www.cancer.gov/cancertopics/pdq/supportivecare/lasthours/healthprofessional/page4/AllPages http://www.charterhealthcaregroup.org/wp-content/uploads/2012/11/Gone-from-my-sight.pdf

    0 Comments
  80. 80
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    frequent lung infections

    Symptoms

    Because of aspirating fluids, dad has had three lung infections in the past couple of months. The benefit of having Hospice is that they get on top of it right away when we start to notice color changes in what he's coughing up. Antibiotics are delivered right to the door the same day. If the pharmacy is closed, they send an order to a 24 hour pharmacy for immediate pickup, for just enough to get through until they can deliver the rest.

    0 Comments
  81. 81
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Hospice

    Other Care

    Foley urinary catheter inserted by the visiting nurse to help with the inability to urinate. This is a new problem. http://www.nlm.nih.gov/medlineplus/ency/article/003981.htm

    0 Comments
  82. 82
    • FreeBird
    • Experience with Adenocarcinoma, Pancr...
    over 4 years ago
    FreeBird's Avatar

    Lost loved one

    Loss

    One year since diagnosis, almost to the day. It's difficult to call something a loss when my dad has given me so much that will always be with me. I'm lucky to be his son, and I miss him very much. It's a huge change in my life to not have him around. He taught me how to care. He was always there when I needed him, loved to help people, and would do anything for his kids. My dad's wish was to die at home. It's the privilege of a lifetime to be able to do that with him, as a thank you. The Hospice doctor came on Friday when he was having additional problems, and told me that he had maybe a few days. Tough. Family visited on Saturday. I pulled the recliner beside his bed and slept with him Friday and Saturday night. When I woke to get up on Sunday morning and get started, I held his hand, and watched as he took his final breath. That's very him. He timed it perfectly, and gave me that last gift. I thought it was me that was helping him. But it was he who was helping me too--again. We got through it together. I love you dad. I hope that sharing our horrible experiences with this cancer continues to help people in some small way. Dad would like that. We did it dad. One year.

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