chemo overdose?

Whisperwill
Whisperwill Member Posts: 6 Member
in Uterine/Endometrial Cancer #1

For months, I have noticed that one of my oncologists did not seem to really be paying attention to the details of my case. Tests were delayed, answers to questions did not seem to fit the situation, statements she made did not match what the radiation oncologist was saying. The last meeting with her was a week earlier than the usual arrangement of meeting the day before chemo. This was to accommodate her vacation. So she did not have new blood tests available, and though I had all my rounds of radiation in the two weeks between appointments, this did not seem to be acknowledged in the visit notes. So when I went for the next round of chemo it had been increased by 20% based solely on an increase in my kidney function. At about that time I had started feeling the side effects of the radiation, so it was a double whammy of radiation side effects and greatly increased carboplatin. The result? I spent a week barely being able to stand upright for more than 5 minutes without feeling like I would pass out. And then the following week slowing building up my strength to do things like make my breakfast or take the dog out for a really short walk. Before this massive dose, I had been waking two miles in less than an hour. I slept alot and the neuropathy in my fingers and feet increased from mildly annoying but not debilitating, to finding it painful to use my hands, dropping things, and having trouble walking. Before this dose, I had been able to do crafts. My sleep was disrupted from being able to sleep three to four hours at a stretch to only being able to sleep one-and-a-half to two hours at a stretch. I went from three or four annoying days of side effects to three weeks of barely being able to function. Then, I dutifully went for my next blood test. And was told I needed a blood transfusion, two pints. I could only get one pint because of the national blood shortage. And today I went for new blood tests and the numbers have barely budged despite my best efforts to take supplements and to eat red meat, etc., as instructed when told I needed a transfusion.

Has anyone had a similar experience?

I have a fear that I have been permanently damaged by that high dose of carboplatin. And, it seems so unnecessary--I was told before that round that the recurrence--a vaginal tumor-- was gone. I m sitting by the phone waiting to her what will happen for the last round of chemo, scheduled for Friday, and have lost all trust.

Your thoughts?

Comments

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #2

    Hello, Whisperwill. I’m so, so sorry you’ve been so sick.

    I have no idea about doses. I was told what I would be getting for each of 6 treatments, and it was never discussed again. My bloodwork held up very well, so that’s probably why there was no need to discuss. But rather than a change in doses, my understanding was that if bloodwork began to suffer, they would delay next session.

    I have had experience with needing blood infusions (not fun, and carry its own set of risks) because I have been taking Zejula, an immunosuppressant drug, to prevent a recurrence. I was originally prescribed 200mg per day. My body was fine with it for about 3 months. Then I started having scary low hemoglobin counts and had infusions twice. I now take 100mg a day and am fine. My RBC was bad, too, of course, but the life-threatening part was the low hemoglobin. I’m guessing that is the case for you. I was advised at one point to discontinue drug for a week, but that was because platelets were too low.

    And you definitely need some answers before your next infusion. I’d say you must insist on it! We ALL know this here…the ONLY person looking out for you IS you! Losing trust is an unacceptable place to be, especially dealing with life-threatening and/or life-altering drugs.

    I AM NOT a medical professional of any shape or form, so it’s just my opinion…and in an effort to somewhat ease your mind,…but it’s unlikely any permanent damage has occurred. In my own circumstances I had occasion to ask the same question and was told that it was unlikely. My bloodwork recovered beautifully. And part of your agony may be due to the cumulative effects of chemotherapy. My bloodwork proceeded to worsen a little after each infusion, but never bad enough to change course.

    I wish you the best, hope you feel better, and are able to get some answers. We are all here for you.

    😎, Alicia

  • Whisperwill
    Whisperwill Member Posts: 6 Member
    #3

    Thanks, Alicia!

    It helps to be reassured. I like to find reasons to trust people, but I find that I need to speak up and challenge medical people more and more. I'm working on how to go about it. Some people are so easy to ask and with others it's so hard to get an answer.

    I did send an electronic message asking about the likely timeframe for recovering my white blood cell nd neutrophil counts. Just asking resulted in my chemo being scheduled for tomorrow as was originally planned, but with lower doses. I'm comfortable with that and hope it will turn out to be a good decision.

    I'm curious about your immunotherapy. If you feel like talking about it, I am wondering at what point it became appropriate to take Zejula. Was it based on any genetic testing or testing of biomarkers?

    Whisperwill

  • thatblondegirl
    thatblondegirl Member Posts: 388 Member
    #4

    Dear Whisperwill,

    I’m so glad you heard something from the doctor’s office and feel comfortable with your Friday appointment. My chemo was administered in my ONC’s office, so he was always present at some point on infusion days, and my chemo nurse was (and still is even though she’s not in his office anymore!) my best source for straight-forward answers!

    I don’t think I remember anyone else on this board who is taking Zejula. There are a few who have/or are currently taking Keytruda. That’s because my drug is prescribed for ovarian, Fallopian tube, and peritoneal cancers. You can click on any of our names and read our “about” pages. My dx was Stage II Fallopian tube cancer and secondary peritoneal (in pelvis). My first post to CSN was on the “other” gynecological cancers page. cmb immediately and graciously invited me to repost and “join” this board! The other GYN related boards are very quiet and she knew I’d have a tough time finding any help. The women here were very welcoming and always a wonderful help! ❤️

    About the only reason I’ve figured out that it’s prescribed for me, and not the uterine ladies, is because of what I refer to as “the out and about “ nature of my cancer. My analogy is that it’s like the difference between horses being contained within a barn, versus “out and about” in a pasture somewhere. I say that my cancer was present “in the pasture of my pelvis.” It wasn’t confined within an organ, like maybe the interior surface of the uterus, or the bladder, but I had tiny tumors sprinkled around my peritoneal surfaces (embedded in ancient endometriosis tissue) on the outside surfaces of several pelvic organs. So, in my estimation, the exterior surface of an ovary would be “out and about.” (These are my words, not ones any doctor would use! ;)) Secondly, Zejula is the drug approved by the FDA for my dx. It’s original approval was for ovarian with BRCA. About the time I was diagnosed it was approved for women w/out the breast cancer genes. Testing showed me as negative for those genes. Along with use for prevention it is also used to treat recurrences. It is advised to begin taking about 8 weeks after your last chemo (I think!) and no more than 12 weeks. I started at 12 weeks.

    If you think it might be prescribed for you, I would be happy to answer any questions!

    Pkease let us know how you are doing! 🙏🏻 That tmo goes well for you.

    ❤️, A

  • mjacoby
    mjacoby Member Posts: 6 Member
    #5

    Hi Whisperwill

    I went through 6 rounds of the taxol and carboplatin. My doctor suggested I take B12 to help with neuropathy symptoms. I also was taking vit B complex just for extra support. This maybe something you should ask your Onc about. Hope this round goes better for you.

    maj

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