new meds

[Gibby21]

I am about to take capecitabine (Xeloda) and because of a mutation also about to take Neratinib (nerlynx). They really talk about nausea, vomiting, and diarrhea. Bad enough that I have to go in and make sure I’m not malnourished which is making me apprehensive about taking this medicine. Of course I’m gonna take it but I’m wondering if I’m gonna need to take a leave at work if I’m running to the bathroom every five minutes, has anyone have any experience with these two medicines together?

thank you….. it seems as the years go. These medicines are getting tougher and tougher!!

Patty

[HelenWi]

hi Patty,

I would try not to worry ahead of time because you might not have the same side effects and all this worry would have been for nothing. But I totally understand because I really worried about my current drug but didn’t end up with the major side effects. So make the most of today and if later there are side effects, deal with it then. Did you ask your onco? Maybe they already know about some mitigations so that you are prepared?

By the way, what mutation do you have? I have erbb2 mutation and the report indicated Enhertu but I’ve also read that Neratinib is given for it.

Best,

Helen

[Gibby21 in reply to HelenWi]

hi Helen, I know this is terrible but I didn’t even ask what the mutation was. They just called me with the result and I was surprised I had a mutation, they wanted give me Enhertu as well but I have a heart condition and they were not able to do it because of that so I’m hoping that this medicine is a good fit!!

[GollyG]

I started cape in November and tender red feet and hands is my only side effect - I hope it's similarly gentle on you!

[Julesdubai]

Good morning I stated capecitabine in October 2023. My dose was high 3 tablets in the morning and 4 in the evening 2 weeks on 1 week off. I experienced blisters on my feet and peeling skin on my fingers. My oncologist reduced the dose to 3 and 3 which reduced the side effects. After only 4 rounds of this treatment I had a Pet scan and I was amazed....the liver tumours had melted away so small they couldn't be measured. So stick with it and hopefully you'll get great results. Love and positive vibes coming your way 💜💜💜

[Gibby21 in reply to Julesdubai]

Well, I start at three in the morning and three at night and my lesions are in my liver as well so I’m hoping I get as good results as you thank you for the positive. I am more concerned about upset stomach and diarrhea. Both medicines cause that so I’m thinking it’s a double whammy. 😊

[Widdershins3]

After 3 dose reductions due to severe H&F syndrome, I now take Xeloda 5 of the tiny (150mg) pills in the AM and 5 at suppertime, with Zofran for nausea (and I've never had that with this drug). I have alternating diarrhea and constipation, simply controlled with 1 Immodium an hour before I have to leave the house or with pitted prunes at breakfast--whichever is needed.

I've never taken Neratinib, so cannot help there, but Enhertu was a miracle drug for me...until I developed "ground glass opacities" and had to stop taking it. I had no other symptoms...well, other than a rapidly falling tumor marker number that gave me Joy and Hope for the first time.

[Fiercefighter13]

Hi there! I've been on Xeloda now for 14 months. 3 pills in the a.m. and 3 in the p.m. one week on and one week off. The first week I started, I was mildly nauseated, chewing on ginger chews helped a lot. After that first cycle my body adjusted and no more nausea, never had diarrhea from it either. My biggest side effects has been hand and foot and fatigue with joint pain. It's all manageable. Hopefully you will do really well and have no or very manageable side effects! Best wishes!

[13plus]

Hi Gibby21, I’ve just been through the same bout of worry as you. I work with clients in their house and was worried about having to run to the toilet too! I started Xeloda just 6 days ago. I’d bought the Imodium in preparation, convinced I’d need it but everything has been just fine! Start moisturizing your feet x 2 daily now, to get the skin in its best condition before you start. I’ve been using raw shea butter . I’ve been doing that religiously. I also bought some Voltarin and have been putting a little of that in souls and palms too (at different time to the moisteriser) . Someone here shared with me a study showing a little of that x 2 daily greatly reduced incidence of HFS.

Choose your footwear carefully (not too tight), avoid walking too far initially and see how you go. After one pilates workout that I did my feet did get very warm later so I used a towel and ice pack to chill my soles, and all has been good so far.

So be prepared but try not to worry about it too much. As others say, we often worry about these things a lot (the fear of the great unknown!) and then it all turns out ok.

Best of luck with it all!

[Antares12]

I just had capcetabine alone. It caused severe anemia in me. I didn't have a problem with nausea or vomiting, nor did I have diarhea. After having to have two blood transfusions my oncologist tried a lower dose, but then I had progression.