jillybean56's Journey with Breast Cancer

Patient: Breast Cancer

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 1 year ago, Female, Age: 63, Stage IV, HER2 Positive: No, ER Positive: Yes, PR Positive: Yes

  1. 1
    10 months ago
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    Chemotherapy

    Drug or Chemo Therapy

    Was on Ibrance 100mg for 4 months along with Ibrance. Wanted to die every single day. Onco totally ignored side effects, and I pretty much had 8 out of 10. Letrozole on top of that...I was a mess.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    2 Comments
  2. 2
    10 months ago
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    Hormone therapy

    Drug or Chemo Therapy

    OK, wo my cancer feeds off estrogen, which has to be suppressed with protease inhibitors. I get it. But I can get equal effects using natural herbs and vitamins, and found scientific studies confirming my thoughts. So went off everything AMA and treating myself, my onco wanted to refer me to hospice and after a weekend of thought, ok, but then she turned her back on me when she knew I wanted to stay at home and not be inpatient, and refused to sign the referral. She says she can't guarantee I have 6 months or less, which is good news, but now have to find a GP who understands my position, can treat mild symptoms and refer me over when the time comes. How many GPs will take on a patient like me?

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  3. 3
    10 months ago
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    Chemo brain

    Side Effects

    During 1st month, did not know what day it was, could not operate the microwave, got out of recliner and forgot why...got lost in my own home.

    1 Comment
  4. 4
    10 months ago
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    Confusion

    Side Effects

    Uncertain as to day or time or what was happening around me in my home. Talking nonsense.

    0 Comments
  5. 5
    10 months ago
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    Breast tenderness or growth

    Side Effects

    Breast was not necessarily tender to touch, but felt like it should be. Tumor grew and new little feeder tumors popped out all over my breast. Would see onco and she would examine me and say the tumor is shrinking, but hen would feel the others popping out and say well, that is new...all during chemo/hormone tx.

    0 Comments
  6. 6
    10 months ago
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    Depression/Anxiety

    Side Effects

    No depression (have lived with that with spouse) and I know depression when I feel it. Would cry at onco visits because she just would not listen to me and how I was feeling, and she would say you seem depressed, let me write you an RX. OK, did take for 3 days and felt like jumping off the roof, so d/c myself. Anxiety is the major issue since I went thru anxiety and full blown panic attacks during menopause (15 years ago) but that had just stopped on its own. But the anxiety would come out of no where, she would not write for a basic low dose of xanax PRN. I don't like to take xanax, it destroys my entire day, but better than anxiety attack.

    0 Comments
  7. 7
    10 months ago
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    Eating problems (anorexia)

    Side Effects

    Was not anorexic by any means, ate like a cow, and I have been a thin person all my life. But the more I ate, the more weight I lost. About 20 pounds, down to 104 at 5'5". Onco just said eat as much as you want, whatever you want when I asked her about foods that would nourish me. She poo-pooed the thought that food had anything to do with it.

    0 Comments
  8. 8
    10 months ago
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    Fatigue (tiredness)

    Side Effects

    Never been so tired in my life during tx. Would sometimes sleep all day, only rising to use bathroom or eat. So sleep about 18 or more hours per day. Every little thing exhausted me, a shower would wipe me out for the rest of the day.

    0 Comments
  9. 9
    10 months ago
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    Fever

    Side Effects

    Ran a fever every single day, always between 100-100.8. Told onco many times, and she always said when did this start, or what do you consider a fever...she never even wrote it in notes that I know of. CT scan during chemo showed very enlarged spleen, she ignored it. Now that I am off chemo/hormones for 2 months and treating myself, the fever only comes on tired days, maybe once a week. Everyone knows how a low grade fever makes them feel, just enough to feel like crap.

    0 Comments
  10. 10
    10 months ago
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    Flu-like symptoms (fever, chills, sweats)

    Side Effects

    Was always cold while under tx. When I had to get out from under blanket, felt like I would freeze to death just to go to bathroom or kitchen. Ached from head to toe, hair even hurt.

    0 Comments
  11. 11
    10 months ago
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    Fluid in the abdomen (ascites)

    Side Effects

    One CT scan showed ascites, but was never mentioned in any others. Did have fatty liver, which seems to have resolved, counts are very near normal.

    0 Comments
  12. 12
    10 months ago
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    Hair loss (alopecia)

    Side Effects

    While on tx, hair would come out by root in long strands and got very straw like. I was going to be bald and that was just okay, but I did not care at that point because I wanted to die. Now off tx for 2 months, hair loss has greatly slowed and altho will never be the same, it has grown and the straw is gone. A lot more gray...but so what.

    0 Comments
  13. 13
    10 months ago
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    Liver problems

    Side Effects

    Presented with a fatty liver when first diagnosed 1/5/18, but had not had a drop of alcohol for 3 months. Had been carrying this cancer for a couple years prior to dx, but had no insurance. Liver counts got better, but onco asked on every visit, are you drinking??? And she did not believe me that I had not touched it in many months. There was a spot on my liver which they determined from scans only to be cirrhosis, but it seems that has disappeared...uncertain as to how much liver is damaged.

    0 Comments
  14. 14
    10 months ago
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    Memory changes

    Side Effects

    Most definitely short term memory was almost nonexistent under tx. Has improved about 80% since going off tx.

    0 Comments
  15. 15
    10 months ago
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    Nausea/Vomiting

    Side Effects

    Some vomiting month one under tx. Then feeling like morning sickness on and off thru out tha day under tx. Mostly gone now after stopping tx.

    0 Comments
  16. 16
    10 months ago
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    Pain

    Side Effects

    Pain when initially diagnosed was probably around 8, pretty bad. Onco put me on 15 mg ms contin every 12 hours and some mild oxycodone for breakthru, 10 day supply. Had to call for refill of that and she only filled it 2 more times for me and said i was taking too many. Only took as I needed them, and I DID need them at that time, badly, and took them according to prescribed amount. Then she refused to fill the oxycodone fast acting, but did increase the ms contin to 30 mg twice a day. Oh yes, I had breakthru pain for sure, and on next visit she outright accused me of abusing the oxycodone and refused to ever write for more. She said "breast cancer does not hurt." Wish she could be in my body for just one day. But I have reduced the ms contin somedays to just one, I did not get MBC to seek out drugs and I do not want to die to have them for pain. On my last and final visit to her, she asked me what my pain felt like, and I said it is like someone has an ice pick and a mallet and is pounding it into my breast. She smirked. It is not an everyday pain, but when it hits, it hits hard.

    1 Comment
  17. 17
    10 months ago
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    Skin changes

    Side Effects

    Dryness for sure, and I drink tons of Fiji water. Used to have skin people would comment on without even touching it, but guess that is gone forever.

    0 Comments
  18. 18
    10 months ago
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    Taste change/loss

    Side Effects

    Oh yes, big time. Would get cravings for a certain food and HAVE to have it every day. For a while, it was steamer clams, and then one day they did not taste good anymore. On to something else for a few days, and then bam, no more. Taste has most definitely changed and remains still after 2 months of being off tx.

    0 Comments
  19. 19
    10 months ago
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    Thinking problems

    Side Effects

    Could not process a lot of times. Would go online to look up something, and totally forget what I was looking for. Keep a list, lost the list.

    0 Comments
  20. 20
    10 months ago
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    Hallucinations

    Side Effects

    Would wake from a dream and the people in my dream would be sitting in my living room. As real as if they were actually there, in 3-D, but never said anything. Had a friendly abominable snowman in the shower with me once. Never scary, but as real as if I could reach out and touch, but I never did because they were pleasant and I knew if I reached out, they would vanish. Very intense hallucinations. While on tx. They have gone now.

    0 Comments
  21. 21
    10 months ago
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    vision loss

    Side Effects

    During 4 months of tx with ibance and letrozole, vision became progressively worse during 1st month and continued until I went off after 4 months. Onco only asked when was the last time I had eyes examined...um, within the past year, I have worn glasses all my life so do take care of my eyes. She made not other comment. Vision got so blurry had to stand directly in front of our large TV screen to read the listings of what was on, and had to hold my laptop screen right up to my face. Greatly improved now that I stopped tx, but still not where it was.

    0 Comments
  22. 22
    10 months ago
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    Told onco from beginning I would refuse outright any IV chemo, but it was not even indicated with my type of MBC. She raved about Ibrance with almost no side effect, so I said okay, will try it, reluctantly. She not only had me on Ibrance but letrozole

    Decision Point

    See above, I was not happy with my uncaring, unfeeling, non empathetic onco who takes a nice chunk of change from pharma chemo companies. You can look up any doc you want on propublica.org under dollars for docs, and look up any doc you want. It is public record, just the facts, how much, from whom, for what. Period. You may want to take a look.

    4 Comments
  23. 23
    10 months ago
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    Other Care

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

    2 Comments
  24. 24
    10 months ago
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    Sentinel lymph node biopsy

    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