Ty/Xel side effects

[hutchibk]

OK, so I did 9 days on Xeloda alone before Tykerb showed up. No side effects at all to speak of...

I added Tykerb 3 nights ago. I am guessing that the side effects are a result of the combination of the two perhaps. Nothing too bad, but a few noticeable differences:

1. Yesterday, day 2 of Tykerb I experienced "poo-terookis of the blowhole" (terminology stolen from best friend, haha). Took an AM dose of the Clay and a PM dose of the Clay (shaken well in grape juice followed by lots of water throughout the day) and today, no poo-terookis, (so far).

2. Bouts of fatigue. I force my way through it, but my overall energy seems to be interupted with moments of fatigue that last 15-40 minutes. I sit, type, doze, etc. and then get going again. Glad I didn't schedule myself to work this week. I would've ended up plum tuckered, being on my feet for 5 hours at a time doing haircuts, etc...

3. Headache. Mild, comes and goes. This is one area that I am a little worried about because we know that I have the 3 small brain mets. When first seen on MRI, there was no swelling around them (about 5-6 weeks ago). We found them incidently, so there were no symptoms from them. Now that I have started Ty/Xel, I have had mild headaches. Is it from the brain mets, or from the new chemicals? Hmmm. Could also be allergies. Every one in Austin gets headaches from the pollens and mold.

4. Achy joints. Starting about 3 days ago, so I think it is from the Xeloda. Or is it because I went to the gym and did 20 minutes on the machines yesterday for the first time in about 2 years?


Can't complain too much. So far so good. I get the feeling that once my body gets a little more used to the new "stew" - it will start feeling a little more normal again. Except, what is normal?

[SoCalGal]

Brenda, Brenda, Brenda. Funny stuff. Okay - I just can't hang with the clay. After 40 days of T-X I just take one immodium at night about every other night and it seems to do the trick.

Re: the headaches. I'm no oncologist, BUT, I also had crappy ass headaches during that second and third week. My whiney posts are probably still in place.

All the things you've described are familiar to me. On a positive note, I feel as if my body, system and symptoms are settling down, "getting used to it". Today is my last day of round #2 of Xeloda. I'm glad for the break.

My 17 year old daughter made me a very powerful art piece for mother's day which says "keep fighting".

It's also good to rest as much as possible and let the meds do their job while giving your body a break and of course, keep fighting...xo.Flori

[Sheila]

Brenda

I just love reading your posts...you give me a smile in your descriptions....hoping the Xeloda is doing good for you....I am on the Herceptin Xeloda combo...this is my week off....wheeeeeeeeee...a free woman...wish my feet didn't hurt so bad...I looked like a goof doing yardwork wearing just socks..no shoes, just socks. Even flip flops were painful, but this week off, I will get some relief!....

[Lolly]

Brenda, sounds like you're doing well re side effects! I have the headaces also, I do think they're easing up though. Keep us posted.

<3 Lolly

[Joy]

Thank you all so much for updating on the side effects and really it sounds as though they become tolerable. I'm counting on that as I always seem to do okay (not to jinx myself). I'm still waiting on meds, blah, blah, blah. In the meantime you guys are making me feel so much better about starting such a truly NEW treatment. And you ALL crack me up so much-what a gift.

When I was on xeloda 5 years ago I had headaches. I'm not a headache person much so i remember how frustrating that was to be one. So Brenda it sure seems logical that the drugs are causing that. And fatigue in and of itself can cause headaches as can dehydration and all of that comes about with these meds.

Could I get a skin update from you guys as far as rashes, pimples, etc. As in are they worse, getting better, just hangin around, really bothering you, etc. that would be great. I have this stupid fear of being a diarrhea- ridden, dried up old, bumpy, toad who has to live in a dark bathroom and hire people to run errands for me. Now you see how really weird I am, huh?


So my abdominal pain seems to have been a $3200 abdominal muscle strain. I was at the hospital for 31/2 hours drinking contrast and waiting and being forgotten about. And later that night my pain felt noticeably better and the next day was even better and today is better still. The CT showed nothing obstructive, but it did show interval progression in the liver mets from a month ago. Which I knew had to be the case. I forget that other things in life can cause pain. I have been cleaning and moving furniture by myself a lot lately and I think that is part of the pain. Those tumors, though, need to be treated and soon before the liver gets compromised and these drugs aren't possible.

okay, enough weirdness from me today. Thanks for your updates and any responses. So glad to have you all!

[SoCalGal]

Sheila,
You said it so well - not for sissies at all. I think that you and I are on the same schedule since today starts my week break from zeloda.

I am constantly inspired to be a better me, everytime I log on and read what's expressed so beautifully on this site.

I hope your feet stop hurting. Have you tried acupuncture or some of the b vitamins that others have mentioned? I assume you are using the creams but I think this syndrom comes from within so the creams may not provide much relief. Maybe the vitamins?

I hope you have a good day.
xo. Flori

[Andi]

Joy - my acne made its appearance this last weekend. I had several little pimples on my chin, nose and cheeks. They seem to be healing and at this point there are no new ones. I am on my second day of my week off xeloda. Since you mentioned you had bad acne in the past and have concerns about this, I would suggest you be proactive and ask you onc how to "prepare" for this side effect, should you have it. I have had the bathroom issues, but if I take an Immodium every 2-3 days, it keeps things under control. I am really tired (more than any of my other chemos) and I have to really work at eating and having things taste good. That's a big switch for me because I have always liked to eat. So far I do not have the hand/foot thing, maybe my cream/b6 from my research study are the real thing, or it could just be too soon for that side effect to show up. I'm sure hoping you get your copay business straightened around so that you can get on with your treatments. Better get all of your furniture moving done first, because if you feel as "out of gas" as I do on this combo, you won't feel much like doing it later! I'm glad your pain wasn't anything serious. Positive thoughts are headed our way...

[hutchibk]

I love the visual of Sheila in socks doing yardwork! I bet that was cute! And Joy - I think we all fear being a diarrhea-ridden, dried up old, bumpy, toad who has to live in a dark bathroom and hire people to run errands. Nothin' weird about that! Doesn't everybody fear that eventually, cancer or not? hahaha

You guys make me laugh everyday. And my counselor actually prescribes laugh therapy! She makes me promise to try and find and watch side-splitting funny movies every week!

[hutchibk]

After the day today... I am wondering if Glaxo Smith Kline is a major stockholder in Charmin? and why would anyone take the Fleet products for a colonoscopy when there's Tykerb??????

[IRENE FROM TAMPA]

I also know the side effects you all are speaking of.....

I seem to get the runs a few day's into the Xeloda. My hands and feet are another story. My heels are so cracked I have taken stock in the band-aide companies. I wear band-aides all over my feet and fingers. When those cracks open up - it is murder. I must have a ka zillion tubes of different creams at home, in my purse, at work. Nothing really seems to work for long. My nails on hands are all lifting and my toes are an issue under the nails. What a mess I am...

Sheila - I have a visual of you in the garden. I have to do the same thing and I try to get outside at the least every Sunday and do some work and get some sun. I have a pair of garden rubber clogs which I wear with socks. They seem to work ok with a little limping around. Between losing strength in my calves and having to pull myself up when I squat, all the band-aides, socks and limping, I must look like a sight to my neighbors.

I love hearing everyone's funny stories, they bring a big smile to my face. I am in good company ladies.

Keep up the funny stuff. We will all get through this together my sisters.

Have a great day

[Lolly]

Joy, my acne-rash is finally clearing up over the last couple of days. I started seeing the first "pimples" by the 3-4th day on Tykerb, and after the first week my face, neck, upper chest, right upper arm and across my upper back were pretty well covered, with my face being the worst. It wasn't really too uncomfortable but not a pretty picture!
This is the second week of the rash, and it's finally clearing up. I don't know if it's a coincidence or not but I started putting "Bag Balm" on it, and it really seemed to help. It's a salve for cow's udders when they become cracked and sore from being milked, and my mother-in-law,who grew up on a farm, told me about it years ago when my babies had diaper rash; it really works well for that! I've been using it on my hands also, as I've been getting cracks on the ends of my fingers, and it's healing those too.
I don't know where you'd find it in your part of the country but up here in Oregon it's in most drugstores and also feed and farm supply stores.
Maybe it will save you from the "old toad woman" fate! :)

<3 Lolly