Doxil & Taste Changes

Ashleyjan7
Ashleyjan7 Member Posts: 27 Member
in Uterine/Endometrial Cancer #1

Hi ladies,

Hope everyone is enjoying their holiday season! I'm reaching out as my mom started Doxil after finding out the Keytruda/Lenvima combo wasn't working. She had her first infusion December 8 and didn't really have any side effects at first. It's hard to tell though as she is absolutely ballooned up with ascites and due to scheduling errors and other factors couldn't get drained until today (this has been a 6 week battle to get scheduled). She was throwing up last Sunday and has been nauseous since. Hard to tell if that is from the ascites causing so much pressure on her abdomen, the Doxil, or both. Over the last couple of days anything she has tried to eat just hasn't tasted "right" to her. For example, she enjoys canned peaches but said they suddenly started to taste like garlic. She tried a piece of fried chicken last night but said after a couple bites that tasted like ammonia. She's already so frail at the moment from the ascites, can't do anything but lay in bed, and now with this new food aversion I'm afraid she's never going to regain her strength. Has this happened to anyone else? If so, any ideas on how to help get her to eat?

Thanks in advance,

Ashley

Comments

  • cmb
    cmb Member Posts: 1,001 Member
    #2

    Many women find their taste and scent senses change during chemo. While I love coffee, I couldn't drink it during chemo because the taste and smell really disagreed with me. And I found grocery shopping difficult because of the food smells. Plus, my doctor recommended staying away from fresh fruits and vegetables that couldn't be peeled or well-washed, as well as items from the deli counter, to avoid any food borne illness. I missed eating salads during treatment.

    During my "phase 2" chemo (Ifosfamide/Doxorubicin) I was really laid low by the side effects. I've written before about how many grilled cheese sandwiches I ate during this time because they were easy to make and digest.

    I know many women have really tried to improve their diet during treatment, but I was just trying to eat what I could tolerate and avoid things that could cause other problems. And that varies by person.

    When I had my usual blood tests (cholesterol, diabetes, etc.) done about a month after chemo ended, I was surprised to see how good my numbers were, despite my chemo "diet." My A1C was lower than it had ever been since before I was first diagnosed with diabetes years earlier. So while my chemo diet wasn't nutritionally ideal, it didn't do any lasting damage.

    Some women have found watermelon easy to eat during chemo, but since my treatment was mostly during cold weather, whole watermelons weren't available and I didn't want to buy the pre-cut slices. I did eat a lot of oranges and bananas since I could peel them and they didn't' t smell or taste off to me. Soups were mostly okay too.

    You'll have to experiment with trying different foods to see what agrees with your mother, but I'd start with blander foods first before trying spicier dishes.

  • Ashleyjan7
    Ashleyjan7 Member Posts: 27 Member
    #3
    https://csn.cancer.org/discussion/comment/1691498#Comment_1691498

    Hi cmb,

    thanks for the quick reply. I figured it was pretty common. Was this essentially the entire time during that chemo? Or did you have days when you could eat things you previously enjoyed and would tolerate it well? Not that there’s anything wrong with a grilled cheese diet! While of course not very nutritious, it certainly sounds pretty darn tasty. I kind of told my mom the same thing; that she needs to just try and experiment with different foods. Her husband did treat her to a strawberry milkshake after her paracentesis today and she said it was delicious. Of course I hope she can eat things other than strawberry milkshakes, but if I can get her to add some unflavored protein to it, it wouldn’t be too terrible. I guess this is a start at least and hopefully she can find other things that appeal to her.

  • cmb
    cmb Member Posts: 1,001 Member
    #4

    I don't think that I changed up my diet much during treatment since the food smells and other food-related issues remained (e.g. diarrhea) regardless of whether it was within the first 10 days after infusions or the later period. I might have eaten a bit more of the same stuff later in the cycle since I didn't feel as terrible as I did right after infusions. But I don't remember going wild with different foods since I didn't feel up to cooking or shopping much, even later in the cycles.

    After the first hospital stay, I did bring my own cereal and peanut butter when I was in for the three days of infusions. I'm not that fussy about food normally, but I couldn't find anything that tasted good there. Whether that was due to the chemo or the food was really that bad, I don't know! I mostly stuck with cereal, peanut butter and crackers and the hospital's jello while I was there.

  • Ashleyjan7
    Ashleyjan7 Member Posts: 27 Member
    #5
    https://csn.cancer.org/discussion/comment/1691514#Comment_1691514

    Thanks again for the reply! So I think part of my mom’s problem might have been the ascites too. She had SO much fluid that she couldn’t eat. She’s slowly getting back to normal and has a bit of an appetite back. She’s due for her next infusion next Wednesday so who knows how she will feel after that but right now I’m glad she’s taking advantage of having an appetite. Also when I’m not feeling well, jello is my first go to ha so I’d probably eat the hospital out of their supply!

  • Ashleyjan7
    Ashleyjan7 Member Posts: 27 Member
    #6

    Hi all, Happy New Year!

    Well since I posted last things have been quite the rollercoaster. A couple days after posting, my mom started to perk back up and began to eat more and managed to keep food down with the help of Zofran. Just as things were starting to look up, she had her second Doxil infusion on Wednesday and has gone downhill ever since. She threw up all Wednesday night, had to go in for an infusion to raise her white blood cell count on Thursday and has just been increasingly weaker since. She lives across the country in southeast AZ so I'm getting most of the info from her husband my brother who lives half a mile away from her. She now just started to being able to keep liquids and liquid nutrition (they've been giving her Ensure) and she has been able to keep them down but is still just so, so weak. She barely goes from her bed to the couch and she's so weak she can barely talk. She gets short of breath just standing up sometimes. This is all so incredibly terrifying to us to see this happen. With her frontline treatment (I believe it was Carbo/Taxol) she hardly had any side effects except for occasional fatigue a few days after her infusion and slightly shortness of breath. Even her oncologist said it was unusual she didn't experience worse side effects. Then she went on Keytruda/Lenvima, had every side effect in the book, and after 2.5 months we realized it wasn't working anyway. The drained her ascites once a few weeks before starting Doxil then again a couple weeks ago when I mentioned above was 11 liters. That in itself took a LOT out of her so I don't think she even had proper time to recover from the draining then back on chemo. I'm so worried about how downhill she has gone. The oncologist wants to do a PETscan which I believe is scheduled after next week. So far her CA-125 has remained the same but they other tumor marker they're using (HE4 I think? If that makes sense?) has dropped significantly. I just feel like we're in this limbo of is it the chemo/fact she was weak before even starting causing all these problems, disease progression, or what?

    I guess what I'm hoping for here are stories that sometimes chemo, especially after going through so much prior, CAN be this debilitating. If so, and the PET shows it's even somewhat working, maybe we can try a dose reduction or to space treatments every 4 weeks instead of 3. Has anyone experienced that? Maybe I'm grasping at straws here, I'm just in such unfamiliar territory now after she sailed right through frontline chemo.

  • cmb
    cmb Member Posts: 1,001 Member
    #7

    I can't say if your mother's present weakness is due to the Doxil treatment or disease progression. But I will say that my "Phase 2" chemo of Ifosfamide & Doxorubicin (the original form of Doxil) left me practically prostate on my chair and bed days after the infusions. I could hardly stand for more than a few minutes at a time. I had never felt weak like this on Carboplatin and Paclitaxel. I don't know which of the two chemos affected me so strongly. Both can cause significant side effects, so perhaps it was both of them, rather than just one.

    I needed extra fluids and antiemetics the week after the infusions just to function at the most basic level. And I didn't have ascites or any of the other side effects your mother has had to deal with recently. So it's possible that Doxil causing at least some of her current issues. I hope her next scan shows all this discomfort has paid off.

  • Ashleyjan7
    Ashleyjan7 Member Posts: 27 Member
    #8
    https://csn.cancer.org/discussion/comment/1691874#Comment_1691874

    thanks so much for your insight. I just think she's been through so much lately, she hasn't been able to properly recover from the first set back before immediately going into the next one. We are hoping for the best with this scan too. I think we just got super lucky with her having very mild side effects from her first chemo experience.

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