baridirects' Journey with Invasive Lobular Carcinoma

Patient: Breast Cancer > Invasive Lobular Carcinoma

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: almost 7 years ago, Female, Age: 60, Stage IV, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    over 6 years ago
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    Money

    Oh No

    No health insurance

    0 Comments
  2. 2
    over 6 years ago
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    Double Mastectomy

    Procedure or Surgery

    Chose not to have immediate reconstruction due to finances. Was fit for prostheses at 6 weeks post surgery - comfortable with appearance.

    Went as Expected: Strongly Agree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  3. 3
    over 6 years ago
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    Chemotherapy variations

    Clinical Trial

    Was elected to arm without Adriamycin; will be receiving only Cytoxan and Taxotere. The study will last 10 years, during which I will be followed regularly by my medical oncologist. The purpose is to discover the most effective combination of existing therapeutic agents with the least side effects. Evidently, the combination I'm being given is more common in Europe than in the U.S.

    0 Comments
  4. 4
    over 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Cytoxan/Taxotere every three weeks for 6 cycles. Participating in research study. First cycle June 11th, 2013 - Completed September 24th!!!

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  5. 5
    over 6 years ago
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    Nausea medicine

    Drug or Chemo Therapy

    Emend a definite plus! Had very little nausea during first round. Also alternated Ondansetron and Promethazine. VERY important to keep up with taking the nausea meds, even if you don't think you need them...once nausea breaks through, it's very difficult to get under control.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  6. 6
    over 6 years ago
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    Medicine for low white blood cell count

    Drug or Chemo Therapy

    Neulasta really kicked in about 48 hours after injection, as expected. Bone pain, low grade fever, fatigue. Responded to Advil during the day; took codeine for one overnight to ensure sleep. Symptoms subsided after about 2 days. For later cycles, only needed Extra Strength Tylenol for symptom control. Some recommend Claritin, but I was unable to take that because of high blood pressure. Blood counts were excellent through the entire treatment period.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  7. 7
    over 6 years ago
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    Dehydration

    Side Effects

    It's been a challenge to keep my fluids in balance. Even though I get additional fluids the day after chemo, I still end up dehydrated for a few days after treatment. Then, it goes in the other direction, and I get swelling in my feet and ankles. I'm told that it will get better after chemo is complete.

    0 Comments
  8. 8
    about 6 years ago
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    Constipation

    Side Effects

    Took daily Benefiber and Senokot-S to control while on anti-nausea meds, with good results overall.

    0 Comments
  9. 9
    about 6 years ago
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    Swelling (edema)

    Side Effects

    Mostly in lower legs, ankles, and feet...was eventually prescribed low-dose Lasix and a potassium supplement, which was helpful. Keeping up with fluid intake is very important, as is controlling salt.

    1 Comment
  10. 10
    about 6 years ago
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    Finished treatment

    Celebration

    Finished chemotherapy on September 24th, 2013!!!!!

    3 Comments
  11. 11
    about 6 years ago
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    External radiation

    Radiation

    Treatments to begin on October 10th, 2013...28 external beam + 5 boosts to mastectomy scar.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
    1 Comment
  12. 12
    about 6 years ago
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    External radiation

    Radiation

    I'm very fair-skinned, and as a result, have have some significant skin burning, including blistering and peeling. It's been pretty uncomfortable, despite the creams I've been given. This, too, shall pass!

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    2 Comments
  13. 13
    about 6 years ago
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    Finished treatment

    Celebration

    Completed radiation on November 25th, 2013!!!! Now, on to long term Tamoxifen and LONG TERM LIFE!!!

    4 Comments
  14. 14
    about 6 years ago
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    Tamoxifen

    Drug Therapy or Medication

    Started post-treatment Tamoxifen November 26, 2013. As I have taken this before, I'm hoping to tolerate it well.

    0 Comments
  15. 15
    about 6 years ago
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    Abnormal CEA

    Oh No

    My first CEA measurement came back high at 11.0. Oncologist is recommending a recheck at a month for trending, rather than jumping into scans at this point. Unfortunately, it was never checked prior to surgery, so we don't have a prior measurement to judge against. Hoping and praying for the best.

    2 Comments
  16. 16
    about 6 years ago
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    Weight Loss

    Celebration

    Starting to lose the weight I gained from chemo, using WeightWatchers Online (with a little help from furosemide to get rid of the excess fluid in my system). 17 pounds so far - lots yet to go, but very encouraged at my success so far!

    2 Comments
  17. 17
    about 6 years ago
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    Participating in local LiveStrong program

    Celebration

    Have just become a member of the LiveStrong program! Looking forward to getting back on the road to making the pursuit of physical fitness a habit!

    0 Comments
  18. 18
    almost 6 years ago
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    Remission

    Celebration

    Baseline post-treatment cancer markers are all NORMAL!!!!!!!!

    3 Comments
  19. 19
    almost 6 years ago
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    Enlarged lymph node found after completed treatment

    Oh No

    The surgeon tells me she feels an enlarged node up in my armpit on the same side as my diseased breast (had a mastectomy and axillary dissection 4/13, followed by chemo/radiation/Tamoxifen); may be regional recurrance or simply reaction to inflammation from radiation. Has recommended removal vs. needle biopsy. Will be done right after New Year's. Praying for benign findings.

    1 Comment
  20. 20
    almost 6 years ago
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    Excisional Biopsy 1/3/14 BENIGN!!!

    Celebration

    My surgeon had found a node in my armpit on the affected side that she was concerned about and recommended removal. At surgery, it was found to be an inflammatory reaction left over from my radiation...I can't adequately express how relieved I am!

    1 Comment
  21. 21
    almost 6 years ago
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    New Health Insurance

    Celebration

    Thanks to the Affordable Care Act, my new health insurance took effect on January 1st...it's expensive, but far, far less so than having to pay for treatment out of pocket. Thank you, Mr. President!

    0 Comments
  22. 22
    almost 6 years ago
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    Hair is back

    Celebration

    I now have enough hair regrowth to appear "normal" - I no longer get that stop-and-stare effect when I'm out in public. Have had many compliments on the short hair, and the color, so after a bit more growth, I think I'm going to go with it!

    3 Comments
  23. 23
    almost 6 years ago
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    Anniversary

    Celebration

    One year from diagnosis! Feeling generally well and looking forward to starting my new job on March 24th!

    5 Comments
  24. 24
    almost 6 years ago
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    Health insurance issue

    Oh No

    Cigna has refused to pay for my 1 year CT and bone scans because I'm not symptomatic at this point. My oncologist is going to bat for me, so hopefully we'll get it settled. In the meantime, I'm having my tumor markers checked, so at least we'll have some idea of my status.

    0 Comments
  25. 25
    almost 6 years ago
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    Have become a mentor

    Celebration

    I have been accepted as a mentor for Scott Hamilton's 4th Angel program. Looking forward to paying forward all the wonderful support I've received during my journey by helping others who are just starting.

    2 Comments
  26. 26
    over 5 years ago
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    Elevated CA 15-3

    Oh No

    My CA 15-3 was found to be elevated at my 6 month check. We're now going through the various scans to find out what's going on. Anxiously awaiting results. I am not symptomatic, so if I have progressed to Stage IV, we will have at least found it early.

    0 Comments
  27. 27
    over 5 years ago
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    Cancer has spread/Metastasized

    Oh No

    Latest bone scan shows bone mets, but most areas of uptake are faint, so we've caught this early. Brain MRI/Chest-abdomen-pelvis CT to be done 3/13 - praying for no soft tissue involvement.

    2 Comments
  28. 28
    over 5 years ago
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    Hormone therapy

    Drug or Chemo Therapy

    Have been taken off tamoxifen and put on letrozole (Femara) daily; will be starting Faslodex and Xgeva injections on 3/27. Hitting this recurrance hard, with all guns blazing!

    Easy to Do: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  29. 29
    over 5 years ago
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    Tumor markers on the way down!

    Celebration

    CA 15-3 level taken in May was lower than in April by over 100 points, and is now lower than when mets were diagnosed in March!

    4 Comments