Start, stop, start, stop

Vicki revised · 10-05-2012, 06:44 PM

This is my X/T routine since we can't get these side effects manageable. Today is day 5 on nothing and the trots are back in full force and my feet are worse. Anyone else have this much difficulty getting adjusted?

Lori R · 10-06-2012, 06:31 AM

Vicki,
So sorry to hear of the difficulties you are having with the X/T. There are others on the board with my info than myself so I hope they quickly chime in.

I was not on X/T, but my onc added Tykerb to Herceptin hoping that would do the trick. (it didn't). I faced a serious case of the trots and it REALLY took in out of me (no pun intended).

I was able to get it under control with large doses of Immodium. Has your onc. informed you have how much you can take? I was amazed at how much they recommended.

If Immodium doesn't get it under control, there are prescription drugs. Are you on one of those? If not, request it. I could not keep myself properly hydrated which negatively impacts so many functions in our system.

I can't add anyhting for the challenging Xeloda impacts.

I certainly hope your efforts pay off!!! Maybe push for an earlier than usual scan, so that you can move on if this isn't the ticket.

Lori

Nancy L · 10-06-2012, 08:25 AM

Vicki,

When Herceptin alone stopped working for me, Dr Slamon added Tykerb. He started with 4 pills but I had a severe allergic reaction--hives all over my body. So he lowered me to three pills a day which I was on for 3 1/2 years. But I think it only was working for 2 1/2 years based on all my problems before my second reoccurrence was finally detected on scans in June.

I had diarrhea the entire time I was on Tykerb. Somedays it was worse than others but always present. I took lots of Lomotil, almost everyday. I wish I knew a magic formula to stop this side effect but I never found one. I hope someone else on this site has one for you.

Nancy

NanaJoni · 10-06-2012, 08:28 AM

Lomitil is better than immodium and there is also a drug called levbid that can be taken along with the lomotil.

Emy · 10-06-2012, 01:59 PM

I took herceptin from sept 2011 to may 2012 ..then it stopped working..now, in addition to herceptin I am taking 6 pills of tykerb 1500 every day....diet helps manage the diarrhea...I eat activa yogurt every day, along with bananas, oatmeal and whole grain bread...as of today, my tumor markers are still down...31...one month ago, my hair really thinned out all of a sudden lost about 50percent of my hair..use hydrocortisone cream for rash on my chest...hope this helps

pwiswell · 10-06-2012, 02:17 PM

I too am having a hard time adjusting to the x/t combination with the same side effects. My onc just lowered my dose of xeloda, and I just restarted it. The trots have been with me since I started the tykerb. Just one of those things I have to live with. Immodium does help me some, but I have to work at staying hydrated. I try to drink a lot of Gatorade. This helps.

Mtngrl · 10-13-2012, 11:28 AM

I'm not on Xeloda, just Tykerb and Herceptin. It's been about 4 months. I take a probiotic supplement every day, and I make my own Greek yogurt and eat some every day. I also think high fiber helps me--popcorn, whole grain bread, brown rice, oatmeal, sweet potatoes with the skin, legumes, etc. I take it at night so that if there is going to be diarrhea it happens first thing, not while I'm out and about. Before I started the probiotic I had diarrhea almost half of the mornings. It's down to about 20 to 25% now, and I can get it right under control with one normal dose of Immodium.

That being said, my onc. says I'm the first patient of hers who has been able to tolerate it. So it's different for different people. Hydration is important, but I really think friendly intestinal bacteria help immensely.

nanblaine · 10-16-2012, 07:33 AM

I'm sorry to be so ignorant but what do you all mean when you say, "when the herceptin stopped working"? How do you know it's not working unless the cancer comes back? Is there a way to check if it's working or not?
I had never heard of this tykerb stuff and pray I will not need it. What is it suppose to do?
Thanks, Nanci

Emy · 10-17-2012, 06:41 PM

The cancer becomes resistant to the drug, so it stops working and the cancer grows...herceptin and femara stopped working for me, so now I am on herceptin, tykerb 1500mg and fulvestrant....tumor markers went down and scan was better.....

Joanne S · 10-17-2012, 11:19 PM

Vicki, Hope you're feeling better! Hugs, Joanne

Donna Sue in Texas · 10-19-2012, 10:22 PM

Hey Vicki,

I feel for you girl. I'm still on the x/t. 5/500 mg Tykerb in the a.m. Followed by 3 Xeloda in the a.m. And 2 in the p.m. I had been doing 4 & 3 but my last PET showed I was stable (no new cells) so I started back on Monday at a reduced dose to see if that will help with my feet. I had taken a 4-week break and they cleared up just fine. Too early to tell how they will do now. The diarrhea from the Tykerb is awful. I take Lomotil and Immodium. But the diarrhea is still there I just can control it enough to get to a bathroom. As far as the feet, I use lots of cream which doesnt stop the reaction but soothes them a little. I couldn't even wear closed in shoes before. They were so red on the bottom they looked purple. Had a real hard time walking too. If it gets that bad again we will tweak it some more and if that doesn't help I will have to switch to something else.

I was able to really enjoy my trip to Big Bend on my break from it, after I could finally put on my hiking shoes.

Good Luck & God Bless

Donna Sue

dchips1 · 11-11-2012, 09:32 PM

Hi ladies,
www.drugs.com is a web sit to input and save your medication lists and update changes, and check for interactions between meds including Tykerb, Xeloda.

search around some of the older posts. Some people are helped by following an IBS diet (irritable bowel diet). Citruce, I take the pill form with lots of water or powerade (has more potassium the Gatorade)
Walmart, now makes a generic brand. WAY CHEAPER!!!! I take Citrucel in the morning (pills), Use the loperamide as needed. Apple pectin in capsule form. Both helps absorb fluid into your intestines as well. Simithicone for bloating and gas. Probiotics, acidophilus, and lactaid pills have helped as well.

Bentyl is a RX drug, it slows down to "rush" but you can't take too much or your bowels will get lazy.
When all else failed I bought a natural diarrhea pills, Contains charcoal, apple pectin and Kaolin clay. Plugs it up pretty good. CAUTION you have to take between other meds, the charcoal can absorbs other medications and makes it ineffective. But is you are like me after 3 days of in the top and immediately out to other end. What good is the medicine doing if it just wasted into the bathroom dances!! Sometimes when I am bad get extra fluids from Onc office.

NO NO"S
include chewing gum, carbonated drinks, not drinking enough water and other fluids, eat small meals throughout the day, instead of large heavy meals.

Good Luck and prayers for healing

Darita

Vicki revised · 01-18-2013, 08:43 PM

Thanks everyone. Over the holidays I got an acute case of stomatitis (mouth sores) that was even in my throat. I cooked a big meal Christmas which the family enjoyed while I ate the teaspoon of mashed potatoes I was able to tolerate. Magic mouthwash didn't give much relief so I starved for 2 weeks and lost 5 lbs. that was worse than anything so far.