Combination of Tukysa, Xeloda and Herceptin
Anyone using the combination of Tukysa.Xeloda and Herceptin? I am going to start this new treatment in August. If anyone can share their experience, that will be really helpful please. I have my worries about side effect
Comments
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Malinda, hows the combo going so far? I'm pretty sure my MO will be switching me to this combo next week. I have very few SE's from H&P but I like to be prepared.
If anyone has tips, I'd appreciate it.
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For me, the diarrhea didn't start until a week or 2 later. I couldn't eat immediately. Lost 10 lbs in the first 2 weeks. It seemed ok at first but I'm starting to lose my mind. I needed more and more pills to manage the stomach cramps, diarrhea. I also have weakness in my legs. My skin is blotchy and dry but I don't care because the fatigue is so bad. My dose was lowered twice due to diarrhea for Tukysa and Xeloda. I'm currently in Hospital so I had to stop but I still only diarrhea which has been an issue .
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Seilien, thank you for the info, I wish the drug combo had been easier on you. And I’m sorry to hear you’re in hospital, are you supposed to restart treatment when you’re released or was it too much?
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hi Illimae, today is my first day of one week off Xeloda, and keep taking Tukysa. One cycle is three weeks, it’s been two weeks, the side effect for me is nausea and vomiting,stomach upset, weak,and some times insomnia (not sure caused by chemo or supportive therapy ). The first week felt nothing, second week , the weakness got worse, and started to have stomach upset, last two days of the second week, Started vomiting In the morning and before go bed, take a nausea pill when you first time feeling stomach upset, and pretty much can manage to stop nausea. I also find out that take the chemo drugs right away after meal much better than take them later. I would say this combo side effect is much less than I expect. Of course, the side effect could be accumulated , maybe worse in future, hope not. I will continue to share my experience
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Another thing I forgot mention, I have constipation. Also it happens in second week, again, not sure caused by chemo or supportive therapy.
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Thank you Malinda, I hope to see continued activity here as more of us begin this combo.
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hi seilien, I am sorry you are in hospital. My MO told me before, with this combo, she might need put me in hydration. I have been taking them two weeks, I don’t have diarrhea, but I have constipation, I also take some supportive drugs(Compazine and Zofran for nausea) Have you tried Imodium to stop diarrhea? Doeit work?
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Keep updating. I had very bad diarrhea first time this morning. I am on my vacation now, I probably will have to heading back soon. Took two capsule Imodium. Today is my second day off Xeloda, third week of this combo, first cy
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Third day off Xeloda of cycle one , I am feeling much much better. Fatigue become less. Two days ago I had terrible diarrhea. I immediately took two capsules Imodium, and every two Hours take one capsule. totally daytime took four and took two before go bed.Fortunately diarrhea was stopped. so far is okay. Keep watching and hopefully my body get used to these drug
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It’s official, I start next Tuesday.
Cross post:
Ok, big news!
I am changing treatment to the Herceptin, Xeloda, Tukysa combo, not due to progression but voluntary. If Xeloda becomes a SE problem, I can reduce the dose or drop it, I can also go back to my first line H&P, if I want to. Also, bombshell, I will stop tamoxifen! MO feels my cancer is driven primarily by the HER2+ and since my body is good, we should focus on the brain (Tukysa shows significant overall survival and progression free survival benefits for brain mets). Stopping tamoxifen has me super excited because blocking estrogen made my knee joints hurt, made me bitchy and killed my sex drive.
(Sorry, if TMI)
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After being released, I stopped taking chemo for at least 2 weeks. I feel tired but the diarrhea has stopped. I've had diarrhea for 3 straight weeks. I agree, i do have some insomnia. My eyes have been also feeling sensitive lately. I'm pretty sure I will be starting chemo again next week.Lucky me, I dont have much nausea mostly because I dont feel like eating. For diarrhea, I take 2 Limodos. Immodium doesn't work well for me.
Just to give you an idea, I have meds for anxiety(2), energy, insomnia(2), diarrhea(2), stomach cramping(2), blood thinner.
My legs are very weak still and i got rashes on my hands and feet. It hurts a little but manageable but I'm mostly stationary.
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Well, I started today. I don’t know how fast the SE’s come on but nothing yet. I’m always nervous about taking a new med, not knowBig how I’ll react, especially after experiencing all the severe effects from chemo twice (taxotere and taxol) landing me in the ER once and discontinuing both after just minutes. Hopefully, when I do get SE’s, they are manageable and the benefits are worth it.
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Hi illimae, I also had terrible terrible SE from taxol, I felt I almost die of it. That was my second time have it and like 2 minutes after they gave to me, my belly extreme pain and felt like my organs were moving together , they immediately stopped it after 15 minutes, my oncologist gave the order : continue it. So my nurse just adjusted it to very very slow rate, and my body accepted it. Now I am on cycle 2 of this new combo. The EF is Manageable so far, but I have this depression really bother me, I really wish treatment could just treat ,not with other problems!
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I agree Malinda. Fortunately for us and future patients, more research focus is on easing SE’s.
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So, day 6 I had a mild upset stomach (like being hungover) and I did end up vomiting. I’m going to try the anti nausea meds at 9am and 4pm tomorrow to see if I can prevent it. Nothing else to report yet but I know something more is likely.
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Well, hands and feet are still ok but ugh, the stomach upset is more frequent and I’ve been vomiting the last several days. I’ll definitely be talking to my MO about that.
How’s everyone else doing?
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Oh Mae, so sorry about the vomiting. You've already lost enough weight!!! Are you on something like Xofran? I was given a trial pack of Emend in case Xofran didn't work, but never had to use it.
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Hi illimae, I am on second Cycle off of the combo. The third cycle going to start at this Friday. I have been experiencing mild diarrhea and nausea during the whole second cycle. I didn’t use diarrhea medicine but used a lot anti nausea drugs. The worst is the H&F syndrome. My hands are swollen and dark, mild joints pain, and feet are very sensitive to walk. I am going to talk to my Dr. about this, cause I read from a Med web, it will not getting better only worse. I may have to reduce the Xeloda dosage.
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Minus, The nausea med I have is generic protonix I think, doesn’t seem to be helping much, definitely discussing that too.
Malinda, sorry about the HF, no signs of it yet but I’m sure it’s coming. I’m thinking I might need to reduce a bit too until we find the sweet spot where I don’t puke.
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illmae, I have been taking Zofran for nausea and it's dissolvable, cause I really hate swallow pills. They are really working for me . My H&F get worse and told my OC,she give me one more week off just keep monitoring the symptoms. She might need reduce Xeloda dosage or both, cause Tukysa also cause H&F
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ItZofran
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Illimae, I had a lot of nausea and vomiting when I started neratinib. When I could not keep a Zofran pill down, I was given the dissolvable zofran lozenges which are fast-acting. And I was given scopolamine patches behind my ear. I used both around the clock for a while, then weaned off as my body adjusted. A dose reduction was part of the solution, but it was also the case that my body had to adjust to the med. Protonix is an acid reducer. Compazine, an antipsychotic, is also given for nausea, but I could not bear how it made me feel.
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I’ve asked for Zofran instead but noticed that my last post was also my last day of Xeloda before a week off (1st cycle of this combo). Currently, I haven’t felt sick since Tuesday afternoon, so I’m thinking it’s the X. I see MO on Tuesday to discuss how it’s going so far and review labs.
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Hi all,
Just began this combo. Two days of tukysa and my bilirubin went thru the roof. My bilirubin level runs high anyway. So now off and onc trying to figure out cause. Has this been an issue for anyone else?
Thanks
Nel
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hi Nel, I had similar issue when I just started it the combo, but my oncologist said that my liver was processing the medication that’s why it’s high, plus my ALT and AST were in the normal range. So she told me not to worry.
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How was your AST and ALT?
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Malinda,
Thank you I will have to go back i and check those levels
Nel
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Hi Nel, I looked all my test results just now, I was wrong. My bilirubin was fine, it’s Alkaline Phosphatase went to 184 U/L, normally should be under 125 U/L. And oncologist told me not to worry since ALT and Bilirubin were normal. I am sorry I remember wrong. I hope you can see the po this as soon as possible.
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Malinda,
Apologies for the delay Thank you More blood work tmrw We will see Levels dropped when I went off Tukysa Reduced dose so lets see the numbers!!!
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Hi there, popping in for a quick update. My 2nd brain MRI since beginning this combo in September shows continued stability of two lesions and decreasing of the one I had gamma knife to last month. There is nothing new and I’m told everything looks really good.
Side effects from the Xeloda had been difficult until I finally found the right meds and routine to minimize or eliminate the nausea, vomiting and diarrhea I initially experienced. I’m very happy to say that now, I feel not only normal but great.
I wish everyone the best on this combo. I see many on other forums planning to start this line very soon or at the next progression, so it looks like this is definitely becoming more widely used in clinical practice.
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