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HELP! Heartburn is intolerable!!

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Hello,

I am desperate and in need of ANY tips to help. I rarely had heartburn before getting chemo (and after the first round it took me a bit to even realize that most of the symptoms were even heartburn that I was experiencing) and this is as bad as it can get.

After every chemo session I lose 10-15 lbs before I can finally eat more food and gain the weight back. It lasts at least a week before I feel some relief to be able to eat more solid food(this last time was longest and was for 8 days). It’s terrible because I WANT to eat, it is just too painful to eat.

Symptoms:

  1. Difficulty swallowing
  2. When I do swallow it feels like I’m trying to swallow a giant ball (even with foods like soup with soft noodles)
  3. Feelings of something in my throat, neck or chest ALL the time
  4. Occasionally, but rare, I feel a burning sensation in my chest

Things I’ve tried:

  1. Avoided spicy or acidic foods
  2. Not eating right before bed
  3. Sleeping elevated/ upright
  4. I take omeprazole (doctor prescribed and let’s me take up to 4 tablets (20mg each) at it’s worst for 2-3 days before reducing to 2 tablets)
  5. Reducing the steroid dosage that I take before, day of and day after chemo
  6. I drink lots of water daily

NOTHING SEEMS TO HELP!!

I am bringing this up again at my next appointment but after every chemo, I literally tell myself I don’t know if I can do it again and it is primarily because of this.

Just thinking about it is making me want to breakdown and cry.

Comments

  • katg
    katg Member Posts: 222
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    Does your doctor have a triage number? I was given Pepcid at the start, but heartburn never occurred for me in 13 rounds of chemo. Now 4 months after chemo and getting infusions of Projeta and Herceptin, I am finding i have heartburn. I take a Pepcid and it works. I am also on Eliquis which is a blood thinner. Femara too which is a hormone blocker. If i have a side effect, i tell them every time. Not being able to eat is not good.

    Honestly, the doctors and medical team need to know your suffering this bad. They have the know how!! I am at the City of Hope in Duarte California and that triage number has been a godsend. Do not wait until your next appointment.

    Take care of yourself. If you see something or feel something, say something. There is only one you.

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    I am getting a TCHP regimen. That makes me wonder if it is the Herceptin and Projeta that is causing it now. 😩

    But thank you for taking the time to respond…

    They do have a triage line that I utilized for this the first round when I realized it was heartburn. Even the days after my first chemo when I was going in for the daily injections, I mentioned symptoms of difficulty swallowing (not realizing it was heartburn) and find it very strange that they didn’t tell me.

    I finally read up on it and realized and called the triage line and that’s when I was prescribed the omeprazole for it.

    My appointment following my first chemo, the doctor was so concerned about my weight loss she started scheduling more frequent visits.

    I make a list of every side effect and tell her every visit. I mention how bad the heartburn is every single time and things keep getting modified in an attempt to help, but it just doesn’t seem to help relieve it.

    But you’re right, maybe I am not making a big enough deal about it. (I feel like I am?!)

    I’m on day 9 from last chemo and have been able to slowly eat more. It no longer feels like I’m swallowing golf balls. Just the lingering feeling of something stuck in my chest.

    I’m just thinking ahead for the next one because I am dreading having to go through this again.

  • denny10
    denny10 Member Posts: 421
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    hi bearytriplepositive, you should not be suffering . It's hard when you are going through chemo to be your own advocate, but I think it's time you had a bit of a meltdown with the medics, you have tried all the thing you can do, now you need more support from them.

    Do you like ginger? I survived my first chemo constantly sucking on tiny bits of crystalised ginger and mostly eating mashed potato. Keep taking the omeprazole, but make sure you dont try and eat for at least half an hour after you take it. Eat anything that you fancy that does not give you heartburn, you can eat 'healthy' when this is over. If you can drink , ask for a liquid food supplement, like a milkshake?

    I hope others will chime in with their advice, wishing you a calm stomach

  • katg
    katg Member Posts: 222
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    Denny 10. Great suggestions.

    beary triple positive. You are doing a great job of advocating. Please keep telling them. I am so happy to hear you have been doing it. Possibly, few have had the exact symptoms. I have to also say i ate a lot of saltines and graham crackers and whatever fruit i could pass. Did you drink shakes? Your body is affected different. How many more chemo's do you have? Planning each day after the chemo and focus on any food you can eat. How many more infusions do you have?

    Try to focus on the fact you feel better. Not on the future. Today is exactly where you are. Heart

  • mle42
    mle42 Member Posts: 124
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    something like mylanta might be physically soothing. They make lidocaine rinses (via prescription), I don’t think you’re supposed to swallow them but I wonder if gargling with a lidocaine rinse would numb your throat far enough back to make swallowing easier? Actually, now I’m remembering….. one time I ended up in the ER because of a drug reaction (not chemo related) which was making my stomach and diaphragm spasm, and they gave me a lidocaine concoction to drink. Maybe ask your doctor about something like that, which could numb your esophagus and stomach?

  • gb2115
    gb2115 Member Posts: 553
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    If they've maxed out the Prilosec and you still don't have relief, maybe they should send you to GI. Maybe they can all and get you in somewhere quickly. You might need a different med, or evaluation to see if something else is going on that needs different treatment.

    I had AC-T with pre-existing reflux. It definitely ramped it all up, but simmered back down to my usual reflux after. I get by on 40 mg Pepcid a day and no lying down after eating, and have an endoscopy scheduled for the summer.

    I hope you feel better!

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    denny10 - I think I will probably have a crying meltdown at this next appointment because I am frustrated at this point that we've tried so many different things and it has not helped. I am dreading going into my next chemo having to go through this again unless we make more adjustments.

    Luckily, the side effects have mostly subsided finally and I was finally able to only need 2 prilosec tablets and with the way I have been feeling, I don't think I will need any more.

    THANK YOU for the mashed potatoes recommendation lol. I am still too hesitant to eat anything that's not soft and mushy and didn't even think of that one. *facepalm*

    I have been definitely eating whatever I can, though.. Healty or not as long as I can eat it. I was vegan for over two years prior to starting treatment. I had planned to continue to eat plant-based while going through treatment, but have not stuck to that lol. I'm not mad about it at this point. I just want to get through chemo!!!


  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    Thanks katg.

    I can't eat any crackers or anything because they are so dry and my tongue feels ick. I have been having to stick to foods that are wet haha.

    I ordered some plant-based ensure which i got a sample of and didn't mind. I actually got it for this last chemo round but shipping was delayed... At least I'll have it ready for the next one! I'm hoping that will help me keep my weight if I continue to struggle with eating again.

    I HAVE THREE MORE TO GO!! Then it's just herceptin/ perjeta infusions from there.

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    mle42 - THANK YOU!! I am definitely going to ask about this.

    gb2115- I was worried for a bit too that maybe there was some other underlying issue, but then thought to myself, if there was an underlying issue... it wouldn't get better over time? It seems to slowly get better to the point where the week leading up to chemo I could get by with just 1 prilosec. It's just at it's worst right after an infusion for (at least this last time) about 8-9 days.


    THANK YOU FOR EVERYONES INPUT. I appreciate it so much. <3

  • WC3
    WC3 Member Posts: 658
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    bearytriplepositive:

    I also had TCHP. I had acid reflux due to the chemotherapy, which is the taxotere and carboplatin. I was given pepcid the day of my infusion and also a prescription for omiprazole that I was supposed to take daily I believe but for reasons, I would start it about a week before chemo and be off it by the end of the second week. On occasion I didn't start it soon enough and that is when I would get the reflux. I found carrots to be soothing.

    Unrelated to the reflux, my throat was often very tender for about a week after the infusion. I determined this was predominantly due to dexamethasone withdrawl as on a few occasions my infusion was delayed at the last minute after I had taken the dexamethasone.

    The chemotherapy itself made my tongue very sensitive starting on the second week after the infusion and made it feel aa if mashed potatoes had the texture of sand.

  • denny10
    denny10 Member Posts: 421
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    bearytriplepositive, not 3 more, 'only' 3 more! you can do this! Good luck with your next appointment.

  • sarahnh
    sarahnh Member Posts: 105
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    bearytriplepositive As soon as I read your original post, I thought, is she on TCHP? Because I had those exact symptoms. There were a few nights after my first round that I thought I was actually going to die from the stomach pain. Also I wondered about getting an ng-tube (feeding tube), but searched the breastcancer.org forums and nobody seems to do that.

    My oncologist prescribed a PPI -- generic Pantoprazole 20 mg (brand name is Protonix), instead of Prilosec. It helped but not enough. So they upped my dose to 40 mg daily before breakfast. That took care of (most) of the pain and heartburn, so I was able to eat and gain weight back. I also had my steroid cut in half (I now take Dexamethasone 4 mg twice a day, before, day of and day after chemo). I also had my Carboplatin reduced from 6 to 5 AUC (but I am ER-/PR-). I still have the "lump in the throat/food is slow to go down" you described (but it is not painful anymore), so I drink water between every small bite.

    I am scheduled to see a onco-GI doctor on Friday (one day after my final TCHP chemo). The GI effects have been, by far, the worst part of chemo for me. It is miserable. I have spent more than a few dinners crying at the table. I try to force food down when I can, because I feel sicker on an empty stomach, and like you, I don't want to lose more weight. I have seen a few other posts of people suffering with this, and it's always (usually) TCHP. You are not alone!

    Here are the foods I can usually eat (had to experiment a lot and tried a lot of suggestions from people on this board), I hope it helps with some ideas for you:

    1. Greek full-fat yogurt (Fage brand) (sometimes with honey mixed in)
    2. Hard boiled eggs: My main protein source
    3. Baked potato (sometimes with butter and/or yogurt): I agree with the other posters' suggestions to try baked potatoes!
    4. Oatmeal
    5. Plain lunchmeat (chicken without nitrates)
    6. Chicken noodle soups: Sometimes tolerable, but I have to change brands frequently
    7. Dried seaweed snacks (Gimme or Annie Chun brand): As you can see from the list, this is my main vegetable
    8. Fruit: Bananas, and fresh and canned apples and pears.
    9. Drinks: Chemo made it difficult to drink plain water. Fizzy water (Polar) is ok, a few drops of lemon juice (or a splash of apple juice) makes tapwater more drinkable. Pedialyte whenever I feel I might be dehydrated.
    10. Protein shakes: When I truly can't eat, I try to choke down a Boost (chocolate) or Ensure (vanilla). It helps.
    11. Almost forgot: String cheese and cottage cheese.


    I wish I had useful advice to give you. Based on my experience, the only thing I can think of is:

    • Possibly ask your oncologist whether prescription Protonix/Pantoprazole might work better than Prilosec. And also, whether changing the dose around might be causing problems. I've also seen posts from people who alternate their PPI with Carafate or Pepcid AC (but I haven't tried that).
    • Possibly consult a GI doctor who has plenty of experience with cancer patients.
    • This is an article I found, one of the authors is the doctor I will see on Friday. I don't know if it has anything specifically helpful, but may help you realize that you are not alone, and that GI symptoms can be truly devastating to deal with: https://ascopubs.org/doi/10.1200/JCO.2015.65.7973
    • Keep trying with different foods/nutrition sources. Don't give up! It has gotten better for me, and I hope it will for you!

    Sorry for the length of this post. I have chemo tomorrow, so I am powered by Dexamethasone steroids right now. It makes conciseness impossible!



    Diagnosis: Mixed IDC and ILC (with DCIS and LCIS), November 2021. Right breast. 5 cm.
    Pathology: ER negative, PR negative, HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
    Treatment: TCHP (Taxotere, Carboplatin, Phesgo)

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    @wc3- after the suggestion of mashed potatoes, I ate some and luckily didn’t have the same sandy texture you experienced! that sounds terrible.

    I was a very strict vegan for over 2 1/2 years prior to starting treatment in march and since then none of the foods I ate before even sound remotely good, so I feel like I’ve been eating like crap! Vegetables like carrots and broccoli are a no go for me right now 🤦♀️

    I also have to stay on these reflux meds all the time or I am suffering! So strange how it effects everyone so differently. When I started experiencing this I was convinced everyone on this regimen had to be feeling this way too! Haha

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    @denny10 -you’re right!! I need to keep reminding myself of that too- ONLY 3 more!!

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    @sarahnh - First- I hope todays chemo went well as well as it can for you. I’m so happy to hear it’s your 6th / final one!!

    And Second - I CANNOT THANK YOU ENOUGH!!

    on one hand it sucks to know someone else is experiencing this as bad as I am… but on the other hand it feels nice to know I’m not alone. I feel like I could take all of the other side effects but this one thing is what makes me just want to not go forward because it’s so bad. And when I tell people it’s because of heartburn I’m sure they think it’s ridiculous because they have no idea!!

    I appreciate all the food recommendations. I’m going to try and stock up on some of those items before Thursday so I am prepared… and I am definitely going to ask the doctor about the diff meds at my next appointment.

    So dreading my next appointment. Hoping whatever changes the doctor makes helps to provide some relief!!


  • sarahnh
    sarahnh Member Posts: 105
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    Hi bearytriplepositive -

    Just wanted to pop in and say thanks for the kind words, and I hope things go well at your appointment Thursday! I hope your doctor will put some thought into it, and come up with some reasonable ideas to try to help with the heartburn and GI misery. It does feel good to not be alone, but I agree, it's awful to think of someone else having to deal with this!

    By the way, the GI specialist I saw last week did confirm to me that when people decrease their PPI dose, it can cause "rebound" problems, including more heartburn and pain.

    Fingers crossed it gets better for you, as it did for me. I'd love to know what your dr says, and if you discover any good solutions!


    PS I also wanted to mention, as another food source, smoothies. Combinations of yogurt, almond milk, soy milk, bananas, frozen berries, Nutella, etc, with a little ice. We bought the cheapest "Nutribullet" blender. The cold and thickness of the smoothie feels better on my throat and stomach, compared to thin drinks or warm foods. Not perfect, but better....



    Diagnosis: Mixed IDC and ILC (with DCIS and LCIS), November 2021. Right breast. 5 cm.

    Pathology: ER negative, PR negative, HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
    Treatment: TCHP (Taxotere, Carboplatin, Phesgo)

  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    Hi @sarahnh!

    Thank you for the additional recommendations. I agree... The cold drinks have been helping and I have been hooked on drinking a soybean / soy milk type drink because I feel like I am getting some type or relief as it's going down.

    Also- Thanks for leting me know about what the GI doctor said! I am kicking myself in the butt for thinking the less meds I am on, the better. I just need to do what I need to do to make this easier for me in the moment so I can hurry and kick the meds to the curb. I have been consistent with taking the 40mg per day, though. I hope it has been consistent enough to offer some relief for this upcoming chemo.

    And I am hopeful for Thursday... I saw the doc today and told her all of the issues I was still having. She ended up prescribing me a lidocaine drink to help numb my throat... And she is also adding pepcid to my infusion on Thursday. I'm also on a trial (anti-diarrhea) med and she was going to inquire to see if that was causing GI issues with people.

    How was your last infusion? I hope you're feeling better from it. What are your next steps from here?


  • bearytriplepositive
    bearytriplepositive Member Posts: 12
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    OH! AND ALSO, I am curious how the appointment with with the GI doctor?! I hope things get better for you now that you're done with chemo and the GI issues resolve...

    I got referred to one today by my oncologist today so I'll see how that goes.

  • sarahnh
    sarahnh Member Posts: 105
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    Hi again bearytriplepositive! Thank you for your posts! I'm sorry I am so slow to reply, I was in that post-chemo sick phase. I hope things went well for you yesterday. Was this your 4th TCHP?

    I have the same feeling as you about medication - the less the better. I have no idea why I am so reticent, because like you said, we have to do whatever we can to get through this acute phase. I have a buddy (who I met thru a local BC group) who went thru this last year, and she sort of said the same thing, but I didn't really understand what she meant until the last few weeks. It's good you've had this realization earlier in the process!

    My GI appt was just ok. It was useful to learn about tapering off the PPI after chemo. But she seemed so aggressive, wants to scope me before surgery. I'll push to have surgery first tho. I can't imagine dealing with the "prep" and after effects while on chemo.

    My next steps are (1) Surgery (probably lumpectomy because the chemo has shrunk my tumors down to nothing) then (2) the standard course of HP or TDM1, depending what they find during surgery. But first, just recover from the final TCHP, ugh.

    Thanks for posting about your appointment! It sounds like your Dr is taking you seriously, and really trying things, with the lidocaine drink and the IV pepcid? That is great - it means you were able to convey that this is a big deal and not "just heartburn"! Fingers crossed this works for you!

    When do you see the GI? Does it sound like your dr wants you to have an endoscopy/colonoscopy?

    Also, can I ask what is the soy drink you mentioned?

    Please post how you're doing, when you can!


    PS I've just noticed that Ondansetron (Zofran) mysteriously seems to help my GI issues. It's an anti-nausea pill, but it really seems to help alleviate my "grinding" stomach pain, and even some of my lower GI pain/discomfort. I don't take it everyday, just at my worst, and just 1 pill (4 mg). It doesn't make me constipated (a common side effect), but does seem to reduce "poop frequency" which is a good thing (haha sorry for TMI!). I don't know if this is useful info, but wanted to mention just in case. I wish I'd figured this out 4 months ago!


    _________________

    Diagnosis (November 2021): Mixed IDC and ILC (with DCIS and LCIS). Right breast (5 cm). Right axillary lymph nodes (several up to 1 cm).
    Pathology: ER negative, PR negative, HER2 positive. IHC 3+ (100% of cells). FISH positive (ratio 16.1). Grade 3.
    Treatment (January 2022): TCHP (Taxotere, Carboplatin, Phesgo).