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TCHP Chemo Side Effects - Weight Loss (3rd Cycle Completed)

Hi All,

My Sweet mother who is 49, has completed the 3rd Cycle of TCHP about 9 days back. We see that she is unable to eat, even though her overall side effects (including vomiting and nausea) is controlled but still has a severe loss of appetite and has literally eaten very very little.

She has also about 24lbs since before the first chemo. This is probably causing her to be tired all the time (most of her blood work is normal)and I am afraid this might get worse over the remaining cycles. Has anyone experienced this kind of weight loss? does it have any serious long term effects?

Another question I had was that during the 3 week cycle, she barely eats anything for 2 weeks, only the last week she is is able to eat moderate quantities of food. Is this normal? She hates even taking electrolytes, says it tastes awful.

Please some one share if you had similar experiences. Thanks in advance.

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Comments

  • moderators
    moderators Posts: 7,884

    Hi ToughMama,

    We're sorry to hear your mom is experiencing this awful side effect. We know you'll receive some helpful responses here soon, but you may also want to check out the Chemotherapy forum for some tips to keep weight up.

    Also, there's some great information on the main Breastcancer.org site's pages on How and What to Eat When You Have Treatment-Related Side Effects, as well as the Eating to Maintain or Gain Weight After Treatment page, and the Weight Changes page.

    We hope this helps, and that your mom starts to feel better soon!

    --The Mods

  • minustwo
    minustwo Member Posts: 13,068

    ToughMama - I had TCHP and lost 60 lbs. I had no nausea but had constant diarrhea for the first two weeks after infusions. I ate only the BRAT diet - bananas, rice. applesauce & toast - and that not regularly. I ate instant oatmeal. I had Carnation Instant Breakfast every day. I added protein powder to both - and the applesauce. The one recommended by MD Anderson was Nestles Bene Protein. I agree, electrolytes tasted awful & I wouldn't drink. This protein powder mixed with anything and had no taste. I didn't eat much for the first two weeks either.

    Midway between each infusion I went back for a full bag of saline since i didn't want to become dehydrated. I started to gain weight after surgery once I switched to the Herceptin only. My opinion is the fatigue is mostly from the treatment. She knows what her body will accept.

    But there are drugs that will stop the nausea & vomiting. I had Kytril with every infusion. And I had dexamethasone steroids the day before, day of & two days after. There are several other drugs that should work. If nothing else, ask for Emend. It should stop nausea cold.

  • ToughMama49
    ToughMama49 Member Posts: 8

    Thank you MinusTwo!! That helps a lot. She is already on dexamethasone and other anti nausea meds but the problem arises the moment she stops taking those meds, she has 1-2 episodes of Vomiting (nothing severe). My primary concern was the weight loss along with the fact that the Side effects are lasting almost 2 weeks, she will hardly have 1 week to recover.And between all of this, mentally she is very down (and even thinks of stopping the treatment on her really bad days).

    I also wanted to know if the physical condition gets worse as the cycles progress (3 done, 3 to go)?

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I didn't lose a bunch of weight during chemo - actually lost more with surgery. But the taste SE's did last for pretty much two weeks and I had very little appetite due to that. I found the electrolyte drinks cut with water (half and half) were more tolerable. Sometimes you just have to keep trying different things. No one food was ever consistently a good choice for me.

    As far as thinking about stopping treatment - been there for sure. Actually went in after my third round to discuss quitting. I think some of my SE's were related to Neulasta. I switched to Neupogen and that helped some. But some SE's are cumulative. It's hard.

    Maybe seeing a counselor associated with her center would help. I expected to feel so much more positive at the halfway point, but all I could think was "Really? I'm only halfway there?" The anticipation of being done got better after the 4th and 5th rounds for me.


  • minustwo
    minustwo Member Posts: 13,068

    The trick is DO NOT stop taking the nausea meds. Get them on board before the chemo and keep taking them. As you've seen, it's very hard to stop once it gets going.

    This link has a comprehensive list of meds that the doc might prescribe. I made sure I had at least two on hand in addition to the steroids & Kytril in the infusion before I ever started chemo. Luckily (or otherwise) my problem was with the other end so I didn't need them.

    http://chemocare.com/chemotherapy/side-effects/nau...


  • illimae
    illimae Member Posts: 5,569

    I finished chemo about a month ago and lost 25 lbs due to how horrible food tasted (imagine old sweaty gym clothes). I found that sweet and salty tasted ok, some days I only ate ramen noodles. Try things like fried rice, chicken soup, halo top ice cream until you find what she tolerates well. My taste buds recovered about two weeks after and I was hungry for everything. Good luck :)

  • dcdrogers
    dcdrogers Member Posts: 42

    I was on TCHP and for the first 2 weeks following treatment I could only tolerate Oranges, Hard Boiled Eggs, Ramen Noodles (I've never liked these, but they tasted good during chemo), Rice and Chicken Noodle soup. These were pretty much the only things that had any sort of flavor and didn't taste horrible. Once in a while I would eat a banana and toast, but they both tasted terrible.

    ~Dee

    p.s. I also developed a slight addiction to sour gummie bears. Something about the sour and sweet taste that I could tolerate oh so well. ;)

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I had a thing for gummie bears, too! And afriend who went through tons of meds was fond of lemon Jolly Ranchers.


  • ToughMama49
    ToughMama49 Member Posts: 8

    Thank you all for sharing your valuable experiences. Keep'em coming!!!

  • BellasMomToo
    BellasMomToo Member Posts: 93

    I also had TCHP. Nausea wasn't an issue with me (at the first hint of nausea I took my anti-nausea meds), but I lost weight (15 lbs total) mainly because I wasn't able to eat much. After eating a little bit of food, I would feel full -- to the point that my stomach felt really uncomfortable, almost painful. I also had bad reflux and gas which added to the discomfort and was sometimes painful. Prilosec OTC and Gas-X helped. My taste buds were wacky so I didn't feel like eating much anyway.

    After I finished chemo I was able to eat normally again (and food tasted good again!) so I gained most of the weight back.

    If your Mom isn't eatting enough calories, perhaps a liquid supplement, such as Ensure, would help?

    It is normal to feel better towards the end of a cycle. Unfortunately it starts all over again with the next cycle.


  • ToughMama49
    ToughMama49 Member Posts: 8

    I would not be too concerned with say an overall 15-20lbs weight loss (across 6 cycles) but my Mother has already lost 24lbs and we are just half way through (3 Cycles done), which is extremely concerning for me. I am worried this might lead to some other health issues.

  • carmstr835
    carmstr835 Member Posts: 147

    ToughMama49 I hope your Mom starts to feel better soon I also have 3 more TCHP treatments to go. I started with TC and had 2 infusions until they changed my chemo to this. I had my 1st treatment almost 3 weeks ago and it wasn't fun. It was a lot worse than TC. I never really was sick with TC hardly at all. But TCHP, I was weak, wasn't hungry at all most of the time either for over a week, and very tired with gastrointestinal issues for sure. Diarrhea then constipation, bloated feeling and gas. It lasted about 5-6 days before I felt rather normal again . I did force myself to get on the treadmill and walk 2 miles, I really did feel better afterwards. When I told my care manager how bad I felt, she said that was all to be expected, and each one gets worse. Did she really need to tell me that? She said she wanted me to be prepared. I will be now but I wasn't last time. I am hoping I can find a way to feel better faster, Maybe I will try to exercise day 1 and 2 after chemo while i still feel better. Day 3 is my worse day, and 4 wasn't much better. I hope your Mom feels better soon. I have lost about 30 lbs since my surgery March 28. But I am on a low carb diet except 5 days before chemo and 24 hours after I have been doing a water and coffee only fast. I think it used to help with the side effects and Dr. Longo believes it helps to kill the cancer cells. So, I have been doing this fast for the last 2 chemos, each one my blood counts are better than the last. My WBC count last time was normal 5 days after the chemo. Definitely a improvement each time. But, not so sure about it helping those nasty side effect now that I m on TCHP. I will continue it though, only 2 more after this next one, and I can afford to lose a few more lbs. And it is cheaper with no food bills once every 3 weeks. I do seem to gain back most of what I lose when I fast before I start the next fast.

  • ToughMama49
    ToughMama49 Member Posts: 8

    Thank you for sharing your experience carmstr835. My mom is gonna have surgery after the 6 cycles of TCHP and I am worried she might lose too much weight (and as a result feel even more tired) as the cycles proceed (surgery might make it worse). She is unable to eat much, has similar gastro issues as you have mentioned. I just hope that she doesnt lose anymore weight. I was under the impression that the after 3-4 cycles, she might not feel the side effects or will be minimal, but looking at her, just seems like all of this just keep compounding. I feel really pained to see her in this condition and me unable to help her much

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    I developed really terrible gastritis and reflux around my second treatment. The stomach pain was horrible. The put me on Prilosec and Carafate which helped immensely within a few days.


  • sfar
    sfar Member Posts: 22

    I did not have Perjeta, but did have the other 3 and can definitely relate to what your mom is going through. I lost 37 pounds during the 6 treatments. I completely lost my appetite and food tasted horrible. Honestly, I forced myself to swallow some things but it was tough. Fortunately I was able to drink chocolate ENSURE Complete. I had up to 3 per day. I did develop anemia during the last month of treatment and that was the worse I had felt. I couldn't even stand at the counter to wash a dish. I was fortunate to be able to control the nausea with meds and did not vomit, though I did suffer from constipation and heartburn.

    I can understand your concern for your mom. My family was very worried too. The loss of appetite and taste bud thing is difficult to understand unless you have been there.

  • paddymom
    paddymom Member Posts: 6

    Its so funny that several others have mentioned gummy bears as tolerable during tchp treatment. My go to was gummy jolly ranchers. I also lost weight during treatment, about 25 lbs. mine was mostly due to diahrrea for the first two weeks and food just tasting yucky. Salty and sweet were somewhat tolerable. The third week I was able to eat more. I asked my doctor if I could stop treatment after my 4th infusion because Iread that the effects of the chemo were cumulative and I was expecting the final two to be unbearable. I continued my treatments and to my surprise not only were the final treatments doable, they were less difficult because I had learned by that time what to do to manage the side effects. Be strong in the knowledge that this is doable!

  • ToughMama49
    ToughMama49 Member Posts: 8

    Feels comforting to heat that others who had gone through these difficulties were able to put up a brave fight and eventually won!! A quick update, My mom is now able to eat food (in the last week of chemo), hopefully she gets as strong as possible before the 4th Chemo (which is to be done on 24th July).

    Another good news is that the tumor has shrunk by more than 55% after the first 2 chemo sessions (measured just before 3rd). This is something that is keeping us all positive. Would love to hear is there is a possibility that the tumor can disappear completely? or is Surgery absolutely required?

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    The tumor can completely disappear. That was my case. Unfortunately - surgery of some type is still required.


  • Fiddler
    Fiddler Member Posts: 59

    I lost 13 pounds and only completed three rounds (fourth round was cancelled due to another bad side effect). I could hardly eat anything for two weeks, really only starting eating during the third week. One nurse suggested drinking chocolate Boost or Ensure in a big glass with a lot of ice and I was able to tolerate that even though I don't like milk much. This helped a lot. Another thing I was able to take was smoothies--add some protein powder to them to help with calories. Everything else tasted like soap to me and took me five minutes to chew a tiny piece of toast.

    I would talk to the doctors about your concerns. They should be concerned about the weight loss as well and can maybe give you some better prescriptions, or maybe even a little "break" in the treatment so she can get her strength back.

    This whole thing is really brutal for people. I hope she improves soon.

  • Leatherette
    Leatherette Member Posts: 272

    Sorry about your mom's issues. I am on TCH, and I am dropping weight fast after only one infusion. Almost everything tastes terrible, or it will taste okay until I am about halfway through it, then I can't finish it. And I'm talking about a small portion to start. Smoothies have helped a little. Cold helps things go down. Maybe milkshakes, just for gaining a little? I am not vomiting at all, and I think I've lost 5 pounds. My stools are loose, but I don't have diarrhea per se. She's lucky to have an attentive daughter looking out for her!

    I took a sip of (good) wine, and it tasted like paint thinner. Electrolytes like sports drinks tasted bad, but Nuun is tolerable to me.

    I hope things get better for your mom.

    L.

  • kmac68
    kmac68 Member Posts: 7

    It looks like your mom and I(same age) started chemo on the same day. I go in for my 5th found of chemo on August 9th. I, like many others had the same issues, especially the side effects first two weeks being so hard. Same as everyone else; no appetite, altered taste buds, nothing taste normal or appealing. I have suffered with terrible diarrhea, dehydration, mouth sores, severe muscle pain, reflux, etc... My Oncologist lowered my dose of Taxotere from 132mg to 110mg and my Carboplatin ever only slightly after my 2nd chemo. The difference it made by the small adjustment has made the side effects, which I still have a little more tolerable. She told me that the chemo would take me to the edge, however she did not want to push me over that edge because she didn't want me to quit chemo but get through it. I have to go in twice after each chemo for IV fluids because I get so dehydrated. So for what it is worth, maybe her Oncologist could lower her dose slightly to make it more tolerable so she won't quit. Best wishes!

  • ToughMama49
    ToughMama49 Member Posts: 8

    A big thanks to everyone who has shared their experiences. Apologies for my delay in posting a reply. I was busy taking care of my mother who is now back in hospital (1 week after the 4th cycle). She had a very high fever 102-103 F and we had to take her back to hosp, this was 2 days back and since then the temperature has finally subsided today but some amounts of Vomiting and Diarrhea are still prevalent.

    As some of you have mentioned, the doc did reduce the dosage of Carboplatin by 20% after the 2nd cycle, this had kind of made the 3th and 4th cycle bearable, but now this high fever. Doc did not find any sources of infection in blood cultures as well (takes 2-3 days time hence the wait). I was very tensed with the high fever, but now I am slightly relived, just hope the last 2 cycles go away soon and Hope RT+Herceptin after that don't cause issues.

  • Gingernurse
    Gingernurse Member Posts: 6

    Thanks for all the notes of supplements. My first TCHP was 8/2- Lunasta landed me in the ED. I have decided to change oncologists. Not only did the nurses not wear PPE (facial masks or require me to do so) when accessing my port, there is no on call DR. I leave a message on their voicemail and wait to have someone call me back. CLOSED ON WEEKENDS

    Zofran is only lasting 6 hours. I took Dramamine and I was able to sleep. I've had horrible diarrhea and dry heaves. This morning at 0400, I was sweating profusely, dizzy and scared at the pot feeling like I had food poisoning. I was able to slowly crawl to the bottom of the staircase to get a hold of the railing. I have orthostatic hypotension so I'm very aware of how slowly I need to move. I blacked out, lost consciousness fell backwards hitting my tailbone and then my head on a hard wood floor. I lay there in a pool of sweat for what seems like forever. When the secretary called she said oh it was the Dramamine- that makes me sleepy- I said did you not hear I was sweating , cold and clammy- having dry heaves and diarrhea? She then said oh- DUMMY- don't give out medical advice!! She then asked if I'd been in for fluids? I said no, and I'm surprised- she replied we only do that in a few occasions- RED FLAG again!!!! I've been drinking water as much as I can but I've now lost 17lbs since Wednesday. I've chosen a different practice where there are several on call oncologists if I have this situation again. Applesauce on toast is the only thing I can stomach except those Kool-Aid popsicles. I had no idea I'd be this sick. I currently have a 101.5 fever and I am scared to death. Fortunately, mu ex husband is buying me an inflatable air mattress so I can sleep on the first floor. The Cancer Care Center can also help me with in home help which it appears I need. Best wishes to all. I'm hoping I can stomach Ensure.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    Gingernurse - Sorry you've been so sick with TCHP. Everyone is different, but it sounds like it's hit you pretty extremely. You said you landed in the ED - are you there now? Have you had recent blood work? With a temp during chemo, you should really be evaluated. Febrile Neutropenia can lead to sepsis and is very serious.

    The MO practice I go to does not have me wear a mask for port access although I know some do. They are also closed nights and weekends, but I've never had a problem getting my calls returned by the on call doctor. I was prescribed Compazine for nausea and told to take Imodium for diarrhea - sometimes different meds work better for different people. You should check to see what other options they have for you.

    Your experience is not the norm and your treatment protocol will need to be evaluated. In most instances - the worst SE's last a few days to a week and gradually improve. Most people feel "almost" normal the week before the next round. I hope you feel much better soon!


  • ToughMama49
    ToughMama49 Member Posts: 8

    Gingernurse - Sorry to hear that things are tough, but i hope they get better soon. Hang in there.

    My Mom is finally back from the Hospital, no more Fever, All the Blood and Urine reports came back -ve for any infections. Doc says possible common cold (as both myself and my dad were suffering from a bad cold/fever during that time). Luckily despite having high temp (103.5 being the max), her blood work is more or less normal. Also they scanned for the Tumor size and a good news that its now just 1.8cm (from 5.5cm to begin with). Doc is very happy with the progress and hopes that final 2 chemo should further shrink it.

    Due to the fever and non eating , my Mom further lost weight. I am hoping to push the next cycle (5th) by a week, so that she recovers some of the weight and is atleast in a better mood. Huge cheers to all the fighters out there!!! Hang in there!!!

  • Iwbt
    Iwbt Member Posts: 16

    I'm very worried abt my weight loss during chemo also. I've completed 3 cycles and have 3 more to go. So far I've lost a total of 20 lbs. I'm 5'10" and right now I weigh 115 lbs. I look and feel horrible. I force myself to drink water because I don't want to get dehydrated. I've tried to make myself eat, but after a couple of bites I'm done. If I force myself to continue to eat, I vomit. Meat is a no go. Will eat most fruits but they don't have many calories. Anyway I asked my oncologist if he has ever stopped treatment because of weight loss and he said no. I then asked if he has ever contemplated that and he said no. He said as long as I keep tolerating the chemo and my blood work was "ok" we would continue. I don't feel good. I'm weak, hungry, an getting depressed. But determined to finish all 6 rounds. My chemo is neoadjuvant and when finished I will have a mascetomy. My concern is that my weight loss will delay my surgery.

  • NotVeryBrave
    NotVeryBrave Member Posts: 169

    lwbt - You should maybe consider seeing a nutritionalist, especially one that specializes in cancer patients. I would hope that maybe your MO or his office could recommend someone.

    Meanwhile - maybe try some higher calorie items for intake. If meat is unappealing, how about other sources of protein like dairy. Would milk or milkshakes be an option? Boost used to make a powder that I would add to whole milk for my daughter when she needed to increase her intake.

    Also - they may need to reduce your chemo doses with your new weight. I think a loss of 10% generally requires an adjustment.


  • carmstr835
    carmstr835 Member Posts: 147

    Well, I have completed my 5th round of TCHP and feel ok. I am tolerating my chemo better than most, but each one really does get worse it seems. I was out of commision for day 2 and 3, day 4 I could function. and Day 5 I am pretty well good. Just very tired and a bit weak. I try to exercise daily, I did exercise day 1 and 2 after chemo, nothing day 3, but was able to get back to it a bit on Day 4 and 5. Every day gets better. I only have 1 more chemo to go August 30th.. Then just the HP I find, if I can walk at least 20 minutes I feel 10 times better. I usually walk 40 minutes and 20 minutes on the stationary bike. That has not happened since the day after chemo, I will try tomorrow though.

  • LTWJ
    LTWJ Member Posts: 118

    I have completed 4/6 TCHP and have lost 20 lbs. Eating has been awful but I force myself now to eat a little( all I can eat) every other hour. I had horrible diarrhea 1-3 cycles and was dehydrated after the 4th. I went back 2x that week for fluids and potassium. They said they are going to tweak the chemo for # 5 to help with the diarrhea. I've been able to control it this week with lomitil but I hate that I have to take it 4x a day for the rest of my chemo. I've been more nauseous this cycle and also have acid reflux, another new fun SE. I have # 5 this Friday. I am far more exhausted thIs cycle than I have been with the others. I hate that the cure has caused so many other problems that I pray go away some day. I appreciate reading from those of you that have completed your cycles and hearing that food will some day taste good again! I have a hard time believing this and it gets me down sometimes.


  • Gingernurse
    Gingernurse Member Posts: 6

    Crazy enough, when I met with the oncology nurse at the new center today she asked me how much dexamethasone I had taken the day before chemo and I said none. She was shocked. I'd even asked the old MO if I was supposed to have any medication the day before chemo and he said no. I have good vibes from the new team I'm working with. They have me on a steroid regimen and a fluids follow up so I don't get so dehydrated and sick this time. Also, they want to see me if I have diarrhea for more than one day since I had it for almost 10 days during the first round.

    I was also given too high of a loading dose of carboplatin. Apparently Cancer Care has a cap- regardless of the creatine clearance and the first doc gave me a maximum loading dose(I don't know off of the top of my head) that likely helped cause all the hematuria, fever chills, and pain. It may not have been the Lunasta shot I had the reaction to after all, but I'm not taking any chances- I will be getting neupogen instead. I've never been so sick in my life, and to be honest, I welcomed death at a couple of points because I felt like I was dying. They don't tell you about all of the weird side effects either. Benadryl has become my new BFF as on day 8 I started to have incessant itchy palms!

    As to eating, not much at all, I ended up with starvation stools and took 11 Imodium that still didn't help. I read Tonya's things I wish I'd known and I'm so glad I did. This is my body and my life, they need to listen to me, and if they don't I can walk out.