kashubian's Journey with Adenocarcinoma, Stomach Cancer

  1. 1 Oh No Icon Oh No
  2. 2 Procedure or Surgery Icon Procedure or Surgery
  3. 3 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  4. 4 Oh No Icon Oh No
  5. 5 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  6. 6 Radiation Icon Radiation
  7. 7 Procedure or Surgery Icon Procedure or Surgery
  8. 8 Other Care Icon Other Care
  9. 9 Oh No Icon Oh No
  10. 10 Oh No Icon Oh No
  11. 11 Oh No Icon Oh No
  12. 12 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  13. 13 Procedure or Surgery Icon Procedure or Surgery
  14. 14 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  15. 15 Side Effects Icon Side Effects
  16. 16 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  17. 17 Celebration Icon Celebration
  18. 18 Side Effects Icon Side Effects
  19. 19 Celebration Icon Celebration
  20. 20 Procedure or Surgery Icon Procedure or Surgery
  21. 21 Procedure or Surgery Icon Procedure or Surgery
  22. 22 Procedure or Surgery Icon Procedure or Surgery
  23. 23 Oh No Icon Oh No
  24. 24 Procedure or Surgery Icon Procedure or Surgery
  25. 25 Procedure or Surgery Icon Procedure or Surgery
  26. 26 Oh No Icon Oh No
  27. 27 Procedure or Surgery Icon Procedure or Surgery
  28. 28 Radiation Icon Radiation
  29. 29 Celebration Icon Celebration
  30. 30 Procedure or Surgery Icon Procedure or Surgery
  31. 31 Side Effects Icon Side Effects
  32. 32 Oh No Icon Oh No
  33. 33 Celebration Icon Celebration
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  35. 35 Other Care Icon Other Care
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  37. 37 Celebration Icon Celebration
  38. 38 Celebration Icon Celebration
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  40. 40 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  41. 41 Oh No Icon Oh No
  42. 42 Procedure or Surgery Icon Procedure or Surgery
  43. 43 Celebration Icon Celebration
  44. 44 Other Care Icon Other Care
  45. 45 Oh No Icon Oh No
  46. 46 Decision Point Icon Decision Point
  47. 47 Clinical Trial Icon Clinical Trial
  48. 48 Celebration Icon Celebration
  49. 49 Drug or Chemo Therapy Icon Drug or Chemo Therapy

Spouse/Partner: Stomach Cancer > Adenocarcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 7 years ago, Male, Age: 65, Stage IIIA

  1. 1
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
    kashubian's Avatar

    Diagnosis

    Oh No

    On 3 March my husband vomited blood while talking to our oldest son on the phone. We headed to the emergency room. He vomited more blood. Not "coffee grounds", or old blood, but bright red fresh blood. He recieved 3 units of blood, having lost roughly half of his blood. He had been bleeding chronically for aproximately 2 or 3 weeks, finally bleeding enough to upset his stomach and cause the vomiting. They did an endoscopy, expecting to find a bleeding ulcer. Instead they found a mass in his esophagus, the source of the bleed. He remained in IMC for 4 days as they sought to stabilize him. A port-a-cath was placed after we met with the oncologist who had seen my mother through stage 4 colon cancer some 4 years before. He was given 2 units of iron and sent home before we got the results of the biopsy, but when they send the oncologist to see you and they place the port you already know what the biopsy results will be. When we were told it was cancer, adenocarcinoma of the gastric junction, we already knew. He was released home on Wednesday 6 March, chemotherapy began the next Monday.

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  2. 2
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    EUS to determine staging of cancer

    Procedure or Surgery

    An endoscopic ultrasound was done 8 March. The tumor extended up his esophagus, but was in the top of his stomach and in at least 1 lymph node. We were stage IIB, T3 N1 M0.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Few side effects to chemo, cancer responded well as evidenced by ease of swallowing shortly after beginning chemotherapy. 6 cycles, first one was CEF, 2nd cycle and subsequent cycles were DEF as the decision was made to be more aggressive. Our oncologist had confered with collegues and "we don't want to be 6 months down the road with this cancer and say woulda, coulda, shoulda."

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  4. 4
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Another Major Medical Crisis

    Oh No

    My father had been my mother's caregiver when she had stage 4 colon cancer 5+ years ago. He planned to help with driving my husband to his chemo, he knew how things went, what to expect, the questions to ask. Monday 25 March, on my brother's birthday we burried my mother's oldest sister. Tuesday 26 March, just after coffee break I received a call at work from my brother. Our father had suffered an anyerism while ice fishing. Thank God he was with his cousin/best friend who knew the signs of stroke and got medical attention quickly. He was taken by ambulance to the local hospital, then air lifted to the regional head trauma hospital, where I met him. Ma & Pa had done their advanced health directive when Ma had colon cancer and thank God for it, as I had beaten her to the hospital it fell to me to ok the surgery that would save his life as his Power of Attorney. He was in a coma for over 2 weeks and remained in SICU for a week after waking before being moved to a regular hospital room. Thus began months of hospitalization and even more months of rehap for my father, my confidant and rock. I was devistated at the loss of my guide through the cancer experience and became not only a cancer caregiver, but a care giver to my mother and my father as Pa fought to survive a severe brain bleed that few survive.

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  5. 5
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
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    Insulin

    Drug or Chemo Therapy

    We began with a first round of ECF (Epirubicin, Cisplatin, Florouricil) which required him to wear the 5-FU pump for 21 days. He returned to work at this time, he is a journeyman construction wireman. His foreman put him outside, on a ladder, working alone. I was livid over this. He is still fatigued from the anemia as a result of his blood loss and we have more fatigue to deal with as chemo will continue. As of his lay off from that particular call for work on a project at the paper mill, he began to research filing for disability. Heavy industrial construction doesn't work that lends itself to working with a disability. After the first cycle of chemo the oncologist decicded to switch his chemo to a DCF regimen (Docetaxel, Cisplatin, Fluorouracil). Our oncologist discussed his case with a couple colleagues, one of which is a stomach cancer specialist at the University of Wisconsin hospital. We switched because he cited that this is a tough cancer and, while the current chemo regimen is good, the new chemo regimen has been a little more successful. He stated "we don't want to get down the road and say we should have, could have, wish we would have. We want to do this right." The cycles will be shorter, 2 weeks, with only 48 hours on the 5-FU pump rather than the 21 days of the first cycle. It will still be a 7 hour day in the chair getting chemo. Chemo brought another issue to light, watching blood sugar. Several years ago, he was testing his blood, for all practical purposes he had diabetes. Testing his blood daily was quickly followed with the VA wanting to place him on metformin. He didn't want the daily meds, so we met with the dietician and treated his diabetes with diet. He went from 235 pounds to a stabil 187 prior to diagnosis with his cancer. During chemo we had issues with his blood sugar spiking. During one particular chemo day his blood sugar spiked to the neighborhood of 450 and he required an insulin injection. His numbers had to fall before he could leave. He was no longer allowed to eat whatever tasted good, we had to watch his diet carefully on chemo days.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  6. 6
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    External radiation

    Radiation

    My husband actually did well through radiation, he completed his 5 week regimen in better condition than most others entered their 3rd week. It is accumulative, the effects piggy back upon eachother, getting worse as you go along. He continued to get sicker in the 2 weeks after radiation completed. Since his cancer was located at the GE junction, he had a lot of trouble swallowing and thus had trouble eating. This was far tougher than chemo.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  7. 7
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Surgery

    Procedure or Surgery

    My husband had an esophagogastrectomy. 2/3 of his esophagus was removed and roughly half of his stomach. A thin clean margin was achieved in his stomach. What remained of his stomach was reattached to what remained of his esophagus. He had 2 large incisions, one from sternum to just below his belly button, the other running horizontally from under his arm pit to nearly his spine. He did well recovering from the surgery and was released to come home after an 8 day stay and a swollow evaluation under a floroscope to look for leakage.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  8. 8
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Home care

    Other Care

    My husband had returned home with a j-tube placed for feeding. He received 100ml of jevity per hour with feedings beginning at 4 pm, running until 8 am in the morning. A home care nurse came to get us started with how to use the pump and how to care for his incisions, the ostomy sight and the chest tube site.

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  9. 9
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
    kashubian's Avatar

    aspiration of tubefeeding

    Oh No

    While struggling to get out of bed to go to the bathroom 2 nights after returning home, he came off his pile of pillows (he was to remain at 30 degrees from horizontal as he no longer has any of the "valves" to keep the contents of his digestive tract down). This caused his tubefeeding to come rolling up into his throat and he aspirated some. Having had a lung collapsed during the surgery placed him at high risk for pneumonia, as did having a chest tube and having had surgery in his chest cavity. We were instructed to watch his temperature very carefully for fever, the first sign of pneumonia. I began getting up every 2 hours during the night to check his temperature and sleeping in bed was forgotten. He began sleeping in the recliner in the living room.

    0 Comments
  10. 10
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Sepsis

    Oh No

    His temperature climbed from 100.4 degrees F to 104.3 in 15 minutes with severe chills and peaked in another 15 minutes at 104.9. Severe chills just about rattled the teeth from his head and he was incoherrent. I was terrified by the speed at which the fever came on. We went to the emergency room, he got fluids and i.v. antibiotics. A chest x-ray was taken, the result was not pneumonia, they did not know what it was. Blood cultures were taken, his pulse rate soared, his blood pressure soared...he was transferred via ambulance back to the regional medical center where his surgery had taken place and he was re-admitted at 2:25 am. When his surgical team came to see him at 6 am, they still had no idea what caused the fever. Typically a leak is suspected, but his swallow evaluation had been good. By 9 am the results of the blood cultures were in, it was gram negative rods in his blood, sepsis. Later that day the source was determined to be his port-a-cath, his "chemo port". The sepsis caused a 3 day hospital stay.

    1 Comment
  11. 11
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Cancer has spread/Metastasized

    Oh No

    We had the follow up with the oncologist and the cancer is recatagorized as regionally advanced. 7 of 11 lymph nodes were cancerous. We discussed where we go now: do we wait until it shows up again in the brain, bones, liver? Or do we go after it and try for a few years of remission? We opted to fight. Our oncologist is conferring with a specialist at Memorial Sloan-Kettering to seek a 2nd opinion, but even if they say they would do nothing for now, we will proceed with chemotherapy.

    0 Comments
  12. 12
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
    kashubian's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    We will begin another 6 cycles of chemotherapy after a few weeks of recovering from the "big" surgery. They call it "big" because a "major" surgey is when they open up one of the body cavities, the chest or the abdomen, "major-major" is when they go into both, so they just call it "big". We plan to return to DCF, since the cancer responded to it as evidenced by his swallowing quickly getting better. I will update as we go through the process.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    1 Comment
  13. 13
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
    kashubian's Avatar

    CT scan - chest and abdomen

    Procedure or Surgery

    31 Oct Steve had a CT scan and 04 Nov we got the results. The news from the scan was good; post surgical there is no evidence of any active cancer showing. There are 4 spots on his liver, which could be merely dense tissue or a higher concentration of blood vessels. The spots are small, were noted in his first CT scan and there has been no change in them. As for those spots we will take a watch and wait approach. As for the cancer, at the moment things look good. It appears that the surgeons got it.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  14. 14
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    04 Nov 2013 we started more chemo. Since we are in stage IIIB territory now, we had talked about the high chance of recurrence. During our surgical follow up with the oncologist he had stated that since Steve isn't a stand around and wait kind of guy, that he wanted to proceed with more chemo to go for remission rather than wait and see where it shows up next. We wound up with 7 of 11 lymph nodes being cancerous, so this is a big concern. The Dr. reached out to specialists with this type of cancer at both the UW Hospital in Madison, WI and Memorial Sloan-Kettering. 2 of the 3 said go agressive with more chemo. Upon further consultation the third doctor agreed that if he were to go with more chemo rather than wait and see, which he preferred, he would go with FOLFOX. So, that is the regimen we began today: Oxaliplatin, Leucovorin, and 5-FU. This will replace the anticipated regimen of more DCF. It is a shorter day in oncology, a couple hours rather than the 6-7 before, so that is good. If he will be lucky and have as few side effects as he did in the pre-surgical chemo, that remains to be seen.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  15. 15
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
    kashubian's Avatar

    Nausea/Vomiting

    Side Effects

    The 5-FU pump stays on for 46 hours following an IV push of the same at the end of chemo day. The day after the pump came off he got nauseated and it persisted even with taking the Ondansetron and Prochlorperazine. I called his nurse to ask what more we could do. Since he has no stomach any more I get scared when he can't eat, and we've been down the dehydration-while-on-chemo road before. He needs to eat 6 to 8 meals a day to maintain his weight and he is already down 20 pounds from when he was diagnosed. So, we started Metoclopramide, which helped a lot last week. Here we are in cycle 2, the day after the pump came off, and we are chasing the same issue, nausea that doesn't seem to want to subside. He is having more trouble with this than with the pins and needles from the sensitivity to cold at this point.

    1 Comment
  16. 16
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 6 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    3 days after receiving the shot the bone throbbing pain came again (shot on Wednesday when 5-FU pump came off, pain started Saturday after supper). The first shot was the worst last time, I'm hoping the next one won't be this bad again. But, it worked and his white blood cell count was much better in his blood draw on Monday. This wasn't the only time he had this white blood cell booster, he has had them before in neoadjuvant chemo and had them again several times throughout adjuvant chemotherapy. He was so happy to hear that while his white blood cell count was down on Monday 13 January, he didn't need the shot as he wasn't going to be receiving any more chemo. YaY!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  17. 17
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 6 years ago
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    Birthday

    Celebration

    16 December, as we sit in Chemotherapy, Steve celebrates his 60th birthday. My oh my how things have changed since he celebrated 59. 2013 was a rough year for our family, with the cancer diagnosis and my dad's aneurysm 22 days later. We are grateful to our team of doctors and nurses that he was here for the Big-6-Oh and we are hopeful that 2014 will be much kinder.

    0 Comments
  18. 18
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 6 years ago
    kashubian's Avatar

    Nerve damage (peripheral neuropathy)

    Side Effects

    Beyond the general fatigue, swings between diarrhea and constipation, dehydration and trying to get ahead of his nausea, we have the painful pins and needles when he gets near anything cold. With winter temperatures well below zero in Wisconsin for days at a time, this has left me with all the snow removal and outdoor chores this year. Some days I get angry at the cancer and chemo for making him feel so crappy and putting so much extra on my plate. Not only am I left with dealing with clearing our driveway, but I have my parents to worry over as well as following my dad's aneurysm 22 days after my husband's cancer diagnosis. Then I feel guilty for feeling angry and resentful. I miss the friends I don't hear from any more and feel pretty lonely and over whelmed, but I am grateful that several of his friends call him often. They are wonderful to do so and he enjoys the phone visites. Not only is this cancer thing hard (my formerly robust 185# husband is now fighting to maintain a very skinny 160#), but the caregiving thing is difficult, overwhelming and lonely.

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  19. 19
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 6 years ago
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    Finished treatment

    Celebration

    Monday 13 January 2014 was the last day of FOLFOX chemotherapy. The 5-FU pump came off Wednesday 15 January. In the words of our oncologist "we have thrown everything we can at this. You are looking good for all we've done for you. Now we scan, watch and wait. I'll be following up every 2 or 3 months for the next 3 years. Let's hope for remission." This is the first time he has talked about a future, even though it's only 3 years, we are hopeful and very thankful for the world class oncology we have in our small city. Those nurses there are angels, they have made what is so difficult an easier thing to endure. So, now we watch, wait and pray. The most likely places for recurrence: liver and lung. What we will watch for: bleeding or pain.

    0 Comments
  20. 20
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 6 years ago
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    CT scan

    Procedure or Surgery

    Yesterday was scan day. Due to schedule conflicts we got the results back yesterday afternoon. The CT scan went well and the lesions on his liver remain unchanged, they may be cysts. We'll have another conversation about where to go with that later. His blood work showed his antigens are up, a "tumor marker" for colon cancer. As he had some pre-cancerous polyps removed after his "horrendous diverticulm bleed" (the surgeon's words, not mine), it was time for his 3 year colonoscopy anyway. The oncologist suspects this is a fluke, but we will do the colonoscopy since it is time and it will rule out trouble. The same doctor who did his EUS to stage his cancer will do the scope. It seems the good news always has a "but" and we're never done waiting.

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  21. 21
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
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    Colonoscopy - CEA numbers up

    Procedure or Surgery

    24 Feb 2014 - CEA numbers were up at last blood draw. 3 yrs ago a "horrendously bleeding diverticulum" (the surgeon's words) resulted in him loosing aprox. 1/3 of his blood. Several precancerous polyps were removed. At the 3 year mark, with the "tumor marker" up, another cancerous polyp was removed. An EGD was scheduled.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  22. 22
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
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    EGD - Esophagogastroduodenoscopy

    Procedure or Surgery

    11 March 2014 - EGD was done and we got pictures of the staples in what remains of his stomach. A couple biopsies were taken, but the doctor remarked that everything looked very good and we will follow up with the oncologist when the results come back. CT scans will continue to play a large role in monitoring when and where the cancer will show up again. So far so good? Both biopsies came back clean, what a relief. Bi-monthly CT scans will continue.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  23. 23
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
    kashubian's Avatar

    Bi-monthly CT scan came back with concerns

    Oh No

    08 May 2014 - CT scan, 14 May 2014 - Results of scan read: We've had CT scans scheduled on a bi-montly basis to watch his liver closely. While they are no longer very concerned about the 4 small lesions there, a 14 mm spot has appeared under his diaphragm. The area is not conducive to biopsy. We discussed our options; wait 2 months and see what the CT scan will show or schedule a PET scan. Since his insurance will cover the PET scan, we opted to move forward with that procedure to get more information. It was scheduled for the day after the appointment to review the CT scan results.

    0 Comments
  24. 24
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
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    PET scan

    Procedure or Surgery

    15 May 2014 - PET scan was chosen over an MRI to try to understand the 14mm area of concern in his liver. The MRI would show a good localized picture, but the PET scan will allow us to get a good overall view of possible areas of metastasis throughout his body (liver, bone and brain are our biggest worries). The news was mixed; the spot in his liver did not uptake (at least at this point in time) but the left side of his thyroid did, as it had in the last PET scan. While our oncologist isn't terribly concerned about this, he does want to follow up and rule out any issues. He stated that it is common to see the thyroid uptake some during a PET scan. A follow up will be scheduled with the endocrinologist that saw him for his blood sugar issues during chemo to do an ultrasound.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  25. 25
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 5 years ago
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    Thyroid Biopsy

    Procedure or Surgery

    A preliminary ultrasound found a nodule in the right lobe of his thyroid. This resulted in a formal ultrasound, which found a nodule which was 1.1 cm in its largest dimension. This meant a biopsy. The biopsy was done with the needle guided by ultrasound, and the endocrinologist looked at the slides immediately to be sure enough tissue had been taken for the biopsy. The biopsy was taken 02 July and we expect the results by the 9th. He has an MRI scheduled for the 10th rather than his customary bimonthly CT scan. I suspect the MRI was scheduled rather than the CT to give a better detailed look at the mass in his liver that resulted in his last PET scan. We'll be following up with the oncologist on the 17th and will learn more then.

    Went as Expected: Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Agree
    1 Comment
  26. 26
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    The last CT scan showed that the lesion in the dome of his liver has grown from 14 mm to approx. 2.9 cm. In the right lobe of his liver another lesion has developed, this one approx. 23 x 24 mm in size. We plan a biopsy, and then radiation.

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

    liver biopsy

    Procedure or Surgery

    17 October 2014 - Liver biopsy scheduled. We expect about 3 hours in recovery from this. I'll post more about how it goes after complete. Then comes another waiting game as we wait for the results to come back. Taking a big breath and trying to be content to wait, I'm a do-er, not a wait-er. Update: The biopsy was done with real time CT. They went after the lesion in the inferior lobe while he was lightly sedated. It took longer to position him than it did to get the biopsy. The "guide" was 18 gage, the needle a little smaller. He didn't shave enough chest hair around his port and said taking that bandage off hurt worse than anything else. There is some localized bruising and it is a little sore and he was sent home with orders to take it easy for a week so his liver can heal. The recovery time was about 2 hours. All went well. On to the next step...more waiting for results.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    3 Comments
  28. 28
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 5 years ago
    kashubian's Avatar

    External radiation

    Radiation

    So, the biopsy came back showing that the cancer had set up shop in his liver. Again, we were not shocked by that, when you have a 23 x 24 mm lesion show up in the space of a few months I don't think you can really be surprised by the cancer diagnosis. He will receive SBRT, 4 treatments of high dose, hopefully to both tumors at each session, 2 per week for 2 weeks. We expect nausea and a feeling of general unwellness, similar to a hang over. I'll update the impacts when we've gone through this process.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    3 Comments
  29. 29
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 5 years ago
    kashubian's Avatar

    Governor of Wisconsin signed proclamation: November as Curing Stomach Cancer Month

    Celebration

    Back in Oct, while waiting for my husband's liver biopsy to be scheduled we felt helpless. What a sucky feeling. I visited Debbie's Dream Foundation: Curing Stomach Cancer and saw in their advocacy tab about how to apply for a proclamation in your state. There were only 3 states to recognize November as Curing Stomach Cancer Month as of 20 Oct 2014. It wasn't much, but it was doing something and doing something was better than doing nothing. So, with the help of DDF, following their step-by-step guidelines, I applied for the proclamation. It typically takes 4+ weeks. The Proclamations Director told me he wasn't sure if he could make the 01 November deadline I had requested as a dream date, but he would see what he could do. Today we got the e-mail that 31 October 2014 Gov. Walker had signed my proclamation. At that moment we felt empowered, like I could accomplish anything, like I could make a difference. What a far cry from the feeling of utter helplessness in the face of this horrific disease that we had experienced only days earlier. It isn't much, in and of itself it will not change the world. In and of itself it is just words on a piece of paper. What it will help do is raise awareness for stomach cancer, one of the most deadly cancers with a dismal 5 yr survival rate of only 4%. That awareness may help spur our health care system to begin early detection screening as is utilized in other parts of the world. It may help raise stomach cancer's status from the least federally funded cancer in research dollars. At least that is my hope. Today I got to be a dreamer and my feet barely touched the ground. Today the world was awash in periwinkle blue (the cancer awareness ribbon colour for gastric cancers, both esophageal and stomach). Today I dreamed they knew how to cure this cancer so we could hear that my husband was NED.

    0 Comments
  30. 30
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
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    Yet another CT

    Procedure or Surgery

    We ended December and 2014 with yet another CT, this one post-SBRT. As fast growing as those liver lesions were, we are pleased to hear "the chest CT is stable, no new occurences" and "the pelvic and abdomen CTs are stable, no new occurrences and no change to the 2 lesions in his liver". So, did we "cook" them enough to kill them? We don't know yet. His LFS (liver function studies) remained stable throughout SBRT, surprising, but then he has been very lucky so far. We'll take stable as being very good at this point. We still have an effective chemotherapy we can use in the future if need be, but we are holding that in reserve. If the radiation didn't "nuke" it, then the name of the game will be to slow it down as much as possible and buy more time. Mixed news, but more positive at this point than negative. Bottom line is we still have hope.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  31. 31
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
    kashubian's Avatar

    Fatigue (tiredness)

    Side Effects

    The fatigue was pretty brutal, but finally, after New Years, he seems to be turning the corner on that. He still only has x-amount of energy per day and we have to budget it, but he is up and around more. The nausea was horrid for a while. Since he has no control over what little is left of his stomach (it is a lax conduit), he cannot vomit, but he still spent some time bent over garbage cans drooling. Some days it was brutal. We've started watching his blood sugar closely again, even too much creamed corn can set off his dumping syndrome and that was exacerbating the nausea.

    0 Comments
  32. 32
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
    kashubian's Avatar

    Diverticulitis

    Oh No

    About 4 years ago he had a "horrendously" bleeding diverticulum. Horrendous, that was his surgeon's word. He lost about 1/3 of his blood that time. The bad news is that once you have diverticulosis, those bad boys never go away, so eat more fiber. He'd been having gut cramps for the last 2 weeks on and off. Saturday night was miserable, Sunday was worse and last night was sleepless so Monday morning brought a call to his oncology nurse about where we should go. Off to oncology for a blood draw before an emergency CT. The good news was it's not the cancer spreading, it was diverticulitis. He was admitted for I.V. antibiotics, which will hopefully clear it up. The CT showed measurable fluid in the abcess, but they don't think it ruptured. At this point bed rest and the iv should handle it and they don't think he will need surgery. If it's not one thing, it is another. The old saying about if you have your health, you have everything is sure true.

    0 Comments
  33. 33
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
    kashubian's Avatar

    Anniversary

    Celebration

    Celebrated 18 years yesterday (01 February). Hard to wrap my head around the fact that we started this journey almost 2 years ago. Back then, with the odds against us, I wasn't sure we'd be celebrating our 17th, much less our 18th.

    1 Comment
  34. 34
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
    kashubian's Avatar

    Back to the ER again, but why?

    Oh No

    Back to the ER last night. As per the diverticulitis, if the pain spiked again or he got an infection we should come in. As it was already the end of the day, we called the triage nurse...and were told to come in. They got his pain under control and his temp down and decided that since there was no emergency and he's a complicated patient (with all that's going on he really is) that we could come home and head in to see his doctor in the morning. We're headed back to the CT a bit before his 2 month scan was scheduled because it will help narrow down what else we have to look at. It's one of 3 things: 1) gallbladder 2) diverticulosis or 3) liver mets. His liver mets could be growing or dying. Our hopes are that the darn lesions are dying post SBRT.

    0 Comments
  35. 35
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    almost 5 years ago
    kashubian's Avatar

    HIDA scan

    Other Care

    So, as we still wait for a definitive sit down to discuss the results of the last CT scan, which was moved up over a week due to his last ER visit, we also tossed in a HIDA scan today. I guess that's at least good news concerning the liver mets that they think it's a gallbladder issue? Toss in a nice little upper respiratory infection on top of all this just for good measure. Talk about anxiety and scanxiety...this not knowing is driving me batty. Nobody seems to be able to let us know why he is having this pain and he's down to being sick of being sick. I'm hoping we get some answers before he becomes depression bound.

    1 Comment
  36. 36
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Respiratory Infection - C. Diff Worries

    Oh No

    Our primary care provider recently retired, that made finding someone to see Steve very difficult. After the diverticulitis and upper right abdominal pain, weeks of not breathing deeply and he developed a respiratory infection. He was placed on yet another antibiotic, his 5th of 2015 and it was only February! Our next worry, C. Diff. Because of all the antibiotics, the good "bugs" in his guts had been depleated, this put him at a high risk for contracting C. Diff. , a dangerous bacteria that can colonize your gut in as little as 24 hours after initial infection, and is very difficult to get rid of. So, Note to Everyone: if you are on an antibiotic, take a probiotic. Talk to your doctor, it's true. Probiotics to the rescue...and you'll need WAY more than you could possibly eat in yogurt.

    0 Comments
  37. 37
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Anniversary

    Celebration

    03 March 2015 was the 2 year anniversary of Steve's cancer diagnosis. It has been a rough ride these last 2 years, a true emotional roller coaster starting at stage IIB, currently at stage IV, filled with aggressive treatments. Fitting that on the first week of March, to celebrate his diagnosis, we traveled to DC with other advocates from Debbies Dream Foundation: Curing Stomach Cancer to ask congress to include stomach cancer in the Dept. of Defense's Peer Reviewed Cancer Research Program (PRCRP) again for fiscal year 2016, fiscal year 2015 being the first year stomach cancer was eligible for these research dollars. The 3rd annual Capitol Hill Stomach Cancer Advocacy day was the same day as the snow storm, and DC ground to a halt. Still, we talked to every congressman and senator we could. We were exhausted, but you can visit debbiesdream.org to see the difference the advocates make. Steve was one of 3 stage IV survivors that were in DC before the snow storm canceled flights. Meeting other family members, friends and survivors was a wonderful experience. Working to make a difference in memory of those who have not survived, for those who have yet to be diagnosed feels so much better than feeling helpless.

    0 Comments
  38. 38
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Cancer is shrinking

    Celebration

    So, after aggressive treatment over the course of the last 2 years, Steve has progressed from diagnosis at stage IIB to stage IIIA after his surgery, to stage IV as of the fall of 2014. His last CT scans (chest, abdomen, pelvis) showed that his liver had clearly received radiation therapy. It also showed stability, and HIS TUMOR HAD SHRUNK! My favorite word prior to this was "Stable". He was stable in his post SBRT CT scans. Now, his oncologist said there were signs that at least one of the tumors did shrink! Now "shrinkage" is my new favorite word....thank you George Castanza. At stage IV, he only has a 4% chance of reaching that 5 yr milestone. His spirits are high, after all, he served on the USS Lawrence and their moto was "Don't Give Up The Ship". He says "someone makes up that 4%, I'm not done here yet, so why not me?" Why not indeed. We feel incredibly blessed.

    0 Comments
  39. 39
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Cancer has spread/Metastasized

    Oh No

    Well, that was a short lived celebration. Just 3 months ago his CT showed everything in his chest, abdomen and pelvis to be stable. In his liver one of the tumors was stable and the other was shrinking. The Monday 04 March CT scan didn't bring such good news. Another lesion is looking ugly in his liver (we've been watching the spot, but around it the tissue is changing, and not for the better) and a lymph node along his spine (in the chest portion of the scan) is enlarged. Going from such great news to such crappy news in only 3 months is crushing. As my husband said "it knocks the wind from your sails".

    0 Comments
  40. 40
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Because the cancer has spread again, we restarted chemo the day after the CT scan. (We would have started same day, but they did not have a chair open). We are going to do 4 cycles of D,C,F, then scan again to see if it is effective. Yesterday was a long day, 6 hours in the chemo chair for Docetaxel, Cisplatin, and Fluorouracil with Leucovorin, too. He will wear the fluorouracil pump for 48 hours and then get a filgrastim shot. He hates that shot more than he hates wearing the chemo pump. Praying that the side effects are not as bad this chemo as they were the last. We remain hopeful.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    1 Comment
  41. 41
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    over 4 years ago
    kashubian's Avatar

    Another Diverticulitis Attack

    Oh No

    He has done 2 cycles of chemo. This last week Monday was chemo day and he had a fantastic week, feeling upbeat and great! Even after the white blood cell booster shot on Wednesday. Then a little chemo constipation hit Thursday evening along with the typical late chemo-week fatigue...and by 2 a.m. Friday the diverticulitis was begining to flare up. By 7 a.m. it was full blown and by noon we were in the ER. Another CT showed no further complications (thank you God!) but it was tough because of the white blood cell booster shot his white blood cell count was screwy. His doctor went right past the normal 50 mL dose of fentanyl to 100 mL, a huge dose, but it helped. By evening he began IV antibiotics, IV fluids, a clear liquid diet and IV anti inflammatories. Admitted to the hospital, he was on bed rest...just in time for his hair to begin falling out. It's rough when a week begins so good and decends into such pain. At least he slept more than I did. He came home late Sunday, just in time for Memorial Day, which was nice. We have to seriously revamp his fluids while he is on chemo so we don't have to go through this again.

    1 Comment
  42. 42
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    Partial Colectomy and Fistula Takedown

    Procedure or Surgery

    One of his diverticulum had abscessed. The infection was hard to find since his white blood cell count was high from the filgrastim shots, and he had some lingering aspects of pneumonia (fluid in his lung) that made it hard to determine just what was causing his persistent low grade fever, as high as 100, but never the requisite 100.5 degrees F to set off any real alarm bells. The Friday before he was to receive his 6th and last planned round of chemo, we had another complication. That abscess had opened communication between his colon and bladder, he had fecal matter in his urine. This is called a fistula. Psychologically horrific, this took a lot out of him. But, (thank you God) he had the best possible scenario of a bad situation. Had the abscess opened into his abdomen rather than draining out his bladder, sepsis would have been rampant and would have changed the outlook. As it was, the surgeon sent him home from the ER for the weekend, the diagnostic colonoscopy and surgery scheduled for the next week. Bleeding on Monday necessitated admittance to the hospital, and the partial colectomy took place on Wednesday along with the fistula takedown. 9 inches of his sigmoid colon were removed and a jp drain placed in the abscess, which remained for 2 weeks after his 11 day hospital stay. The surgery did cause us to reprioritize, taking the break from chemo wasn't decided on our schedule, but by the development of the fistula. However, we were able to have the lymph node mass along his spine biopsied during the surgery, something we otherwise would not have been able to do. The surgery has been difficult for him to bounce back from. He entered the hospital at 152#, he is now 144#.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  43. 43
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    Biopsy of the largest lymph node in the mass came back negative!

    Celebration

    While this does not mean there is no cancer lingering in his lymphatic system, it was encouraging to get verification that the largest lymph node in that mass along his spine was not cancerous. That and his hair grew back. He still loves his porkpie hat, having watched Breaking Bad again, and does resemble Walter White aka Heisenberg. Unable to ride his motorcycle due to weakness and fatigue, he invested in a '96 Mustang, which he found for a song...now if only the nausea would pass and he could feel well enough to drive even that.

    0 Comments
  44. 44
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    ct scan

    Other Care

    A CT of his chest, abdomen and pelvis is scheduled, we are praying for a good outcome. Post surgical chest pain necessitated a trip to the ER, to rule out a cardiac event. Since he has had chemo and a big surgery, he is at a high risk for developing blood clots. The CT showed no blood clots in his lungs or heart, but did show fluid built up in his right lung. Testing determined his heart is very good, it may have been anxiety. Ruling out the worst first, it is better to be safe than sorry. The chest CT did give a peak at his liver and where that lymph mass was along his spine. Grainy at the bottom of the scan and not in a good angle, a poor image showed his liver tumor and that lymph mass along his spine may be either stable, or have grown slightly. Our oncologist stopped by his hospital room to see him and told him not to be too concerned, that the image quality of that part of his body was poor. He said we will continue with the plan and get a good CT image as scheduled. The wait time is excruciating, this is scanxiety on steroids, but it also gives us time to pray. I'm not proud, I beg daily for a favorable outcome, admitting it is my greed and selfishness that prompts me to beg, but I ask for the miracle anyway...and the strength to accept what will be if not what I want. I'm praying with all my heart and soul. The nausea continues to make it difficult for him to eat, and with an abreviated digestive system gaining weight was difficult enough. He has lost more weight. As if that were not enough, during this wait time a neighbor, a very sweet man that was my sister's classmate, passed away from stomach cancer. He had been misdiagnosed with IBS and just recently was diagnosed properly. The gastrectomy was too late, the cancer too far spread and they closed him up with out completing the surgery. 3 weeks after returning home, he has passed. My heart aches for his family, unfortunately that is the story of 80% of those diagnosed; late stage with limited treatment options. We so desperately need more research, so there is hope. It also shows perspective, my husband can still fight...and we can still pray the scans come back in a good way for us.

    0 Comments
  45. 45
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    Cancer has spread/Metastasized

    Oh No

    CT scans (chest, abdomen, pelvis) showed mixed results. The liver tumors are stable, which is good, but the mass along his spine is bigger. We have exhausted the conventional chemotherapy options.

    0 Comments
  46. 46
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    Enter a clinical trial or no?

    Decision Point

    Our doctor feels the trial is a good match and it is being done at MD Anderson. We are enrolling in the MATCH trial, hoping to get to the treatment stage. MATCH (Molecular Analysis for Treatment Choice) will take a biopsy of his solid tumor and look for genetic mutations. If his cancer has a genetic mutation they are developing a drug for, he will enter the treatment phase, if not, he is out of the trial and we are out of options. We are praying for a match. This is the face of oncology in the future; highly targeted therapy dependent upon an individuals specific cancer mutation. Our doctor is hopeful.

    3 Comments
  47. 47
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    applied for the MATCH trial - Molecular Analysis for Treatment CHoice solid tumor trial

    Clinical Trial

    Cleared initial screening step. Difficulty finding doctor willing to biopsy, tumor around aorta and pancreas (all things are not where they were prior to gastric pull-up). Accomplished biopsy via EUS (oesphageal ultrasound). Biopsy sent to MD Anderson in Houston, TX for genome sequencing. This is the largest trial of its type, and is historic. 10 arms, more to be added as targeted therapies are developed, 22 targeted therapies, 140+ genetic mutations plus their variants. This trial is presently expected to be ongoing. Visit the NCI for more information, it's both freghtening and exciting to be on the cutting edge of what oncology will look like in the future. Then comes the wait while his tumor is analyzed. The waiting is the hardest part. When the report came back, his cancer did not match a treatment in the trial.

    0 Comments
  48. 48
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    His mutation matches an approved targeted treatment!

    Celebration

    While he did not match a treatment in the MATCH trial, we now know more about his cancer. It is now well differentiated, rather than moderately differentiated. It is also exhibiting a CDK 4 amplification. There was a breast cancer drug fast tracked to approval only this last February, the CDK 4 amplification and the targeted therapy have been seen in gastric cancers at the EG (esophageal/gastric) junction and used to treat it. The drug, Ibrance, is very expensive, $118,200-annually-expensive. We are fortunate to have done the application to the trial, which gave us the genetic mutation of his cancer, which gave us a report with which to attemp to get approved for treatment with Medicare...or we will have to seek other means such as approaching the manufacturer directly. We're taking this as being an even better answer than the one we were praying for; not an experimental treatment, but an approved one!

    0 Comments
  49. 49
    • kashubian
    • Experience with Adenocarcinoma, Stom...
    about 4 years ago
    kashubian's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Ibrance (Palbociclib) is the treatment that matches his mutation, a CDK 4 amplification. Newly approved just months ago (Feb 2015), it is very expensive. We are currently waiting to see if Medicare will pay (he had to go on Medicare after 2 years on disability), hoping the MD Anderson genome report will bolster our case for why we want this expensive treatment. If Medicare won't cover this therapy, we have a few other avenues to explore. Praying.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments