Skyemberr's Journey:

  1. 1 Oh No Icon Oh No
  2. 2 Oh No Icon Oh No
  3. 3 Oh No Icon Oh No
  4. 4 Oh No Icon Oh No
  5. 5 Decision Point Icon Decision Point
  6. 6 Procedure or Surgery Icon Procedure or Surgery
  7. 7 Procedure or Surgery Icon Procedure or Surgery
  8. 8 Procedure or Surgery Icon Procedure or Surgery
  9. 9 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  10. 10 Radiation Icon Radiation
  11. 11 Celebration Icon Celebration
  12. 12 Procedure or Surgery Icon Procedure or Surgery
  13. 13 Celebration Icon Celebration
  14. 14 Procedure or Surgery Icon Procedure or Surgery
  15. 15 Procedure or Surgery Icon Procedure or Surgery
  16. 16 Procedure or Surgery Icon Procedure or Surgery
  17. 17 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  18. 18 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  19. 19 Procedure or Surgery Icon Procedure or Surgery
  20. 20 Procedure or Surgery Icon Procedure or Surgery
  21. 21 Milestones Icon Milestones
  22. 22 Procedure or Surgery Icon Procedure or Surgery
  23. 23 Oh No Icon Oh No
  24. 24 Milestones Icon Milestones
  25. 25 Oh No Icon Oh No
  26. 26 Radiation Icon Radiation
  27. 27 Procedure or Surgery Icon Procedure or Surgery
  28. 28 Radiation Icon Radiation
  29. 29 Radiation Icon Radiation
  30. 30 Side Effects Icon Side Effects
  31. 31 Celebration Icon Celebration
  32. 32 Symptoms Icon Symptoms
  33. 33 Oh No Icon Oh No
  34. 34 Procedure or Surgery Icon Procedure or Surgery
  35. 35 Procedure or Surgery Icon Procedure or Surgery
    ???
  36. 36 Oh No Icon Oh No
  37. 37 Drug or Chemo Therapy Icon Drug or Chemo Therapy
  38. 38 Oh No Icon Oh No
  39. 39 Radiation Icon Radiation

Patient: Colorectal (Colon) Cancer > Adenocarcinoma

Patient Info: Receiving hospice or palliative care, Diagnosed: almost 4 years ago, Female, Age: 47

  1. 1
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Misdiagnosed

    Oh No

    Was told I had hemorrhoids and anal fissure

    0 Comments
  2. 2
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Misdiagnosed

    Oh No

    Was given botox for fissure and told to wait a few months

    0 Comments
  3. 3
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Too sick at thanksgiving to eat. Had impacted colon

    Oh No

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

    0 Comments
  4. 4
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Misdiagnosed

    Oh No

    Got sicker and was rolling on bathroom floor.

    0 Comments
  5. 5
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Argued with doctor

    Decision Point

    Argued until doctor did digital exam and felt the huge tumor I'd been feeling in there since May 2015

    1 Comment
  6. 6
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Cryotherapy

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  7. 7
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    colonoscopy

    Procedure or Surgery

    Saw pictures of the tumor that day and knew I had cancer. It was confirmed by the lab a couple of days later.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  8. 8
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Colostomy

    Procedure or Surgery

    I was impacted and it was affecting my ability to pee. Emergency surgery scheduled for morning. I was scared.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  9. 9
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Xeloda

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  10. 10
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Internal radiation

    Radiation

    28 days of sunburnt butt.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  11. 11
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Finished treatment

    Celebration

    Done with first round of chemo and radiation!

    0 Comments
  12. 12
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Ct scan and pet scan (2nd ones)

    Procedure or Surgery

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

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  13. 13
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Cancer is shrinking

    Celebration

    4/20/16 pet scan reveals 1/3 loss of the live tumor! Next on to surgery in June or so before it can travel further.

    0 Comments
  14. 14
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Removal of rectal tumor

    Procedure or Surgery

    june 8 2016. I almost died from complications and landed in the icu. I spent more of my summer either in bed or in the hospital with bad infections.

    Went as Expected: Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  15. 15
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 3 years ago
    Skyemberr's Avatar

    Ileostomy

    Procedure or Surgery

    I had two more procedures done with my ileostomy, vaginal reconstruction and tumor removal with my colon being reconnected.These complicated things quite a bit. I had to spend the first 24 hours in the icu wearing this corset that was making it hard for me till breathe. I ended up up with collapsed lungs on both sides in the lower lobes. I was then moved to an oncology transplant ward and stayed there for ten days having random 102 fevers. Finally, after transfusion and my white count normalizing I was allowed to go home on day ten. I had fever right away when I got home and they kept going through the weekend. On the fourth day home I was re admitted for another six days with an abscess in the bottom of my incision. Pus and blood was leaking out of me. It didn't hurt,, but was gross, and I was beginning to get red lines around the incision. They readmitted me and did blood cultures. I stayed for another six days and tonight I am home with the help of a wound vac. The Infectious disease specialist tells me that I had e. Coli in the wounds. What I had guessed and was right. There were two other bacteria I'm unfamiliar with there too.tonight is my first night home and I is iffy because the wound vac bandage was applied on top of my paint bandage and the ostomy keeps leaking. We've caused it five times tonight, but really just need the home health nurse to fix the wound vac bandage.I'll see how it goes in the morning!!!!

    Went as Expected: Strongly Disagree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Agree
    3 Comments
  16. 16
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 3 years ago
    Skyemberr's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    It hurt a lot for awhile when it was put in today, but 12 hours later it seems to be less painful. I was under General anesthesia, and happy about that because if twilighted I'd have been chatting with the doctor and remembering it all. So if you are like me and stay pretty functional on twilight meds, I recommend asking to be out out for a bit.

    Went as Expected: Agree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  17. 17
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 3 years ago
    Skyemberr's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I'm just starting FOLFOX today but already in 18 hours or so it's really had noticeable impact. I'm already having the cold related neuropathy and nausea. The steroid decadron is interfering with my sleep.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  18. 18
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    almost 3 years ago
    Skyemberr's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    I just finished six rounds of FOLFOX chemo. I had many complications. My disagree was reduced and complications continued. Oxyplatin was determined to be acting as a neurotoxin and was removed finally. I continued with leucovorin and 5fu. I had more complications including colitis. Doctor then halted chemo, stating that he feels that it is not benefiting me enough to justify the damage and complications it is causing.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    3 Comments
  19. 19
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 2 years ago
    Skyemberr's Avatar

    Ileostomy reversal

    Procedure or Surgery

    I finally head my ileostomy reversal on 3/31/17. The procedure hurt and left a floor in long open wound on my stomach. My body is getting used to the gastro system being hooked up again. I try to stay close to a bathroom. Already things are better but I'm not ready to leave the house just yet. The surgery does hurt. Don't let any crazy doctors tell you that it doesn't.

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    5 Comments
  20. 20
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 2 years ago
    Skyemberr's Avatar

    Surgery

    Procedure or Surgery

    I just had my first colonoscopy since being diagnosed, and the area that was supposed to have clean margin had a giant precancerous polyp growing there. It was removed, but I'm a little worried that this will be a recurring problem or that the cancer metastasized further than we thought.

    Went as Expected: Disagree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  21. 21
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    Recurrence

    Milestones

    Scan reveals 2cm growth in apex of left lung.

    0 Comments
  22. 22
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    Punch needle biopsy left lung

    Procedure or Surgery

    The twilight didn't work and I was wide awake during the procedure. I will never twilight again unless my life depends on it. Knock me out!

    Went as Expected: Strongly Disagree
    Minimal Recovery: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  23. 23
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    Cancer has spread/Metastasized

    Oh No

    Biopsy shows I have rectal cancer in my lung. I consider this my official step to stage IV, though I suspected I was really stage IV after my first cancer surgery. The truth is that if you read my chart I was likely stage IV before they operated due to a node on the parailiac that was very enlarged, suspicious for a met, even in my doctor's notes.

    0 Comments
  24. 24
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    PET scan results

    Milestones

    I got my PET scan results back and it continues to show adenocarcinoma in the apical area of my left lung. It also showed 3 new nodules in my middle lobe of right lung (1) and lower lobe of right lung(2). Doctor said this takes surgery off of the table as an option but has referred me for radiation to attempt to kill the mass pn the left.

    1 Comment
  25. 25
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    Cancer has spread/Metastasized

    Oh No

    Because of the 3 new nodes in the right lung i am no longer a candidate for a surgery, and the oncologist has admitted for the first time that he cant cure this cancer due to it being metastatic.

    0 Comments
  26. 26
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 2 years ago
    Skyemberr's Avatar

    Truebeam radiosurgery

    Radiation

    Out doesn't hurry while they give it to me, but on day 2 out of 4 i can definitely feel the areas they worked on and they are sore.

    Painless Experience: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    1 Comment
  27. 27
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 1 year ago
    Skyemberr's Avatar

    Implant chemotherapy port

    Procedure or Surgery

    I had my port replaced and they moved it from.right side to my left. It hurts a lot this time, but maybe it's worse on the left? It's only been three days so I'm trying to be patient.

    Went as Expected: Disagree
    Minimal Recovery: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Disagree
    3 Comments
  28. 28
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 1 year ago
    Skyemberr's Avatar

    Internal radiation

    Radiation

    Truebeam Radiation to 2 spots in right lung. One of the spots grew 5mm in 3 months and the other one is 5mm from my heart, There are 5 others in there but we are ignoring them and going for these two because they are the worst. All of the other tumors so far are growing slowly and are away from vital structures.

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  29. 29
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    over 1 year ago
    Skyemberr's Avatar

    External radiation

    Radiation

    I will be starting another round of four truebeam treatments. I am happy that again it will be quick. This time they are going after 2 masses. One is growing too quickly, and the other is too close to my heart at 5mm away! The weird this is getting used to the idea that the doctors let me decide what I want to do about each new care item since I am now a IV. So this no brainer therapy to get something away from my heart was a question mark for them! Of course we don't want it invading the heart. It seemed so strange to me at the time that it was an optional thing, until it really sunk in that ALL of my care decisions are up to me at this point.

    Painless Experience: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    7 Comments
  30. 30
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 1 year ago
    Skyemberr's Avatar

    Radiation Pneumonitis of the left lung

    Side Effects

    I had/have Radiation Pneumonitis that started in July 2018 and is finally starting to go away in mid August 2018. It was very painful. The doctors thought I was having a pulmonary embolism or a dissecting aorta. It very much mimicked the symptoms of a heart attack. There was pain in the loo lung and a lot of neuropathy in the skin. My palliative care team had taken very good care of me. We are pretty sure this is from SBRT radiation.

    3 Comments
  31. 31
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    about 1 year ago
    Skyemberr's Avatar

    May have to wait one or two years before chemo

    Celebration

    My cancer has decided to grow very slowly compared to what this mutation usually does! I wont' have to have FOLFIRI chemo for one to two years according to the doctor! This is the first time he has been willing to talk about anything beyond the three month mark.

    3 Comments
  32. 32
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    11 months ago
    Skyemberr's Avatar

    Post Obstructive Pneumonia or Pneumonitis, pain in Right lung with Tachycardia

    Symptoms

    I had been having a lot of chest wall pain and a racing heartbeat for over a month... then last month the pain got very bad in my right lung. I was hospitalized with tachycardia and what they at first thought was post obstructive pneumonia over last weekend. I was on antibiotics and then onto steroids. I am now on round 3 of steroids for this and finally seem to be getting the pain under control somewhat. The doctors cannot tell me if this is a pneumonitis pain or permanent damage to my right lung from either met growth or scarring. I am having a hard time just getting in to see pulmonology to get another opinion! Fingers crossed this is a temporary problem on the heels of the very positive outlook my oncologist gave me at beginning of october.

    0 Comments
  33. 33
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    5 months ago
    Skyemberr's Avatar

    Cancer has spread/Metastasized

    Oh No

    Fast growing tumor in left kidney that was suspicious for kidney cancer!

    0 Comments
  34. 34
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    5 months ago
    Skyemberr's Avatar

    Biopsy of Kidney with Ablation

    Procedure or Surgery

    It was supposed to be a one day in and out procedure, but I ended up needing hospitalization. 4 days later I'm finally able to be up and it off bed.

    Went as Expected: Neutral/NA
    Minimal Recovery: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  35. 35
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    5 months ago
    Skyemberr's Avatar

    Procedure or Surgery

    Biopsy on the kidney mad is complete and it is not kidney cancer. It was a very aggressive meet from the colorectal cancer. It's all removed now, but it makes me concerned for progression going forward.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  36. 36
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    2 months ago
    Skyemberr's Avatar

    Cancer is back/Recurred

    Oh No

    Mass in left kidney is back even though it was ablated

    1 Comment
  37. 37
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    2 months ago
    Skyemberr's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Had EXTREME reaction to FOLFIRI chemo.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  38. 38
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    2 months ago
    Skyemberr's Avatar

    Cancer has spread/Metastasized

    Oh No

    Tumor found in brain in the cerebellum. Had to have emergency hospitalization due to brain swelling.

    0 Comments
  39. 39
    • Skyemberr
    • Experience with Adenocarcinoma, Colo...
    2 months ago
    Skyemberr's Avatar

    External radiation

    Radiation

    5 SBRT treatments to tumor in the cerebellum.

    Painless Experience: Neutral/NA
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments