Journey's Journey with Bronchioloalveolar Carcinoma

Patient: Lung Cancer > Non-Small Cell > Adenocarcinoma > Bronchioloalveolar Carcinoma

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: almost 7 years ago, Female, Age: 72, Stage IV, EGFR mutation positive: No

  1. 1
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Lobectomy

    Procedure or Surgery

    My lobectomy went well, even with breaking a rib. It takes a long time to get over the surgery, but I am glad I did it.

    Went as Expected: Neutral/NA
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  2. 2
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I was on Cisplatin and Navelbine for chemo. I was also given Amilfostine to protect my kidneys from the Cisplatin (since I also have diabetes). After 2 rounds, I gave up on the Amilfostine since it lowered my blood pressure too much and caused me to vomit.

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  3. 3
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Anemia medicine

    Drug or Chemo Therapy

    After going through chemo, I found I was anemic and have been on iron the last year or so. My energy level is slowly coming back.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  4. 4
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Bone strengthening drugs

    Drug or Chemo Therapy

    I had Zometa infusions every month for the first 6 months, and then had Xgeva shots every month for a total of 2 years of bone therapy. My bone density has improved, though still low.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  5. 5
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Several times while on chemo my neutrophils (white blood cells) were too low to have chemo. I was given a shot of Neupogen and told to go directly home and stay away from people and germs. My WBC was 1.02 thousand/cmm (normal 4.8-10.80); nutrophils were 262/cmm. The next day I had another shot of Neupogen and had was able to have chemo the following day. The Neupogen works very fast, but it does cause bone pain. The pain is from the hard working blood cells growing in the bone marrow. After my last chemo I was given a shot of Neulasta for the white blood cells. It is a long lasting neutrophil booster. I was told to take 1 Claritin tablet for the bone pain. That was helpful.

    Easy to Do: Agree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Agree
    0 Comments
  6. 6
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Nausea medicine

    Drug or Chemo Therapy

    I had a lot of nausea with the chemo. The first week of Cisplatin was the worst. Breakfast was when my appetite was the best. My wonderful husband fixed me microwaved eggs with bell peppers and onions. At lunch I did not have much, Glucerna and crackers, maybe some broth. Dinner was something mild and easy to cook. I lost 5 pounds that week and worked at gaining the weight back the rest of the month before I was hit again. I weighed 82 pounds when diagnosed. I am still trying to gain weight and am 98 pounds now - 3 years from diagnosis.

    Easy to Do: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  7. 7
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Pain medicine

    Drug or Chemo Therapy

    Pain medicine will cause constipation, but I was glad I had it available. I had a lot of pain from the lobectomy and broken rib. It is best to stay on top of the pain. I did not always do that being afraid I might get hooked on it or something, but the doctor was right - I did not get hooked on it.

    Easy to Do: Neutral/NA
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  8. 8
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Anemia (low red blood cell counts)

    Side Effects

    With the chemotherapy I became very tired, had some shortness of breath, and anemic. The red blood cells take longer to come back. I was told to take Slow-Fe which I have been taking about a year or more. I do see that I have a little more energy now, but I still get tired easily. I will be getting tested again soon to see how well my iron is doing. I am off the Slow-Fe now.

    0 Comments
  9. 9
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Blood sugar, high (diabetes)

    Side Effects

    With chemo, I was given a steroid which raises blood sugar levels. Since I am a diabetic, my BLGs went up to the moon. I had to call my primary care doctor to order some fast acting insulin for me to correct the BLGs on chemo days. This was another 'New Adventure' for me since I had never been on Humalog before. I am now using it routinely along with slow acting Lantus and Glipazide (oral Diabetes med).

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  10. 10
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Bone fracture or break

    Side Effects

    During my lung surgery, my rib broke. When I take a deep breath, it hurts a bit. I wasn't able to tolerate a bra for a long time, but now the pain is much better. I am not on any pain medicine now.

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  11. 11
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Constipation

    Side Effects

    Constipation comes with pain medicine and the chemo that I was taking. I took the recommended stool softener, etc., and drank a lot of water. I also exercised as best that I could.

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  12. 12
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Fatigue (tiredness)

    Side Effects

    Chemo made me very tired. I think a lot of it is the what is going on in our body (killing the fast growing cells like blood cells) with chemo. Also, stress can cause the tireness and we all know how stressful having cancer can be.

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  13. 13
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Low blood pressure (hypotension)

    Side Effects

    I was given Amilfostine along with Cisplatin and Navelbine to help protect my kidneys from Cisplatin. Amilfostine caused low blood pressure very quickly during my 15 minute infusion. I felt really sick. I took it only twice and gave up with it.

    0 Comments
  14. 14
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Nausea/Vomiting

    Side Effects

    Cisplatin causes a lot of nausea. I took all the anti-nausea medicine I could. My husband made a medicine chart for me since it got very confusing to take the different medicines at different times. Some I could take every 4 hours, some every 6 hours, some every 2 hours, some only on the two days after Cisplatin, etc. My husband became my personal pill dispenser, and he wrote down every time I had a pill and also what I had during chemo. We brought this chart every time we went to the cancer center.

    0 Comments
  15. 15
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Low white blood cell counts (neutropenia)

    Side Effects

    Several times while on chemo my neutrophils (white blood cells) were too low to have chemo. I was given a shot of Neupogen and told to go directly home and stay away from people and germs. My WBC was 1.02 thousand/cmm (normal 4.8-10.80); nutrophils were 262/cmm. The next day I had another shot of Neupogen and had was able to have chemo the following day. The Neupogen works very fast, but it does cause bone pain. The pain is from the hard working blood cells growing in the bone marrow. After my last chemo I was given a shot of Neulasta for the white blood cells. It is a long lasting neutrophil booster. I was told to take 1 Claritin tablet for the bone pain. That was helpful.

    0 Comments
  16. 16
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Nerve damage (peripheral neuropathy)

    Side Effects

    After chemo I did have a little tingling in my feet. It seems to have gone away now.

    0 Comments
  17. 17
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
    Journey's Avatar

    Pain

    Side Effects

    I had a lot of pain from the lung surgery and broken rib when I got home from the hospital, and the pain medicine helped a lot. While in the hospital I was pretty comfortable. I had an excellent doctor, and terrific nurses.

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  18. 18
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Taste change/loss

    Side Effects

    Everything tasted like metal when I was on chemo.

    0 Comments
  19. 19
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Weight loss

    Side Effects

    I lost 5 pounds of weight the first week of chemo (Cisplatin & Navelbine) each time I had it. Cisplatin was given once a month. I had to regain the weight I lost during the 3 other weeks that I only had Navelbine. I was able to do this all through chemo. Now that chemo is over, I have been continuing to try to gain weight. I started chemo at 82 pounds. I am 98 pounds today.

    0 Comments
  20. 20
    • Journey
    • Experience with Bronchioloalveolar Car...
    about 4 years ago
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    Remission

    Celebration

    PET/CT came back Good! I will have port removed May 28th. Oncologist is happy and I am VERY happy!

    0 Comments
  21. 21
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
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    Remission

    Celebration

    Good PET/CTs! In remission now (but not cured)! Just had my port removed. Oncologist thinks I am doing well. See Oncologist every 3 months and PET/CTs every 6 months.

    0 Comments
  22. 22
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
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    Diagnosis

    Oh No

    Surprised to find out that I have lung cancer and never smoked.

    0 Comments
  23. 23
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
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    Cancer has spread/Metastasized

    Oh No

    What! It is in my bones?!!! Can't it be just degenerative bones?

    0 Comments
  24. 24
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
    Journey's Avatar

    Procedure or Surgery

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

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    0 Comments
  25. 25
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
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    Loss

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

    0 Comments
  26. 26
    • Journey
    • Experience with Bronchioloalveolar Car...
    almost 4 years ago
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    Surgery or No Surgery

    Decision Point

    Generally if stage IV, the surgeon will not do surgery but my surgeon thought it was not in my bones and I could get through surgery just fine. The oncologist thought it was in the bones and chemo was the only way to treat it. When I asked the oncologist expected from chemo, I was told she could reduce the tumor by 50%. I thought the surgeon's 100% removal sounded better. I had a bone biopsy done to decide if I go to surgery or chemo. The bone biopsy came out negative so I went to surgery and agreed to chemo afterwards.

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