Tykerb/Xeloda, side effects??
 

I don't know if theses are potential side effects or I have new areas of mets. I have been on Tykerb/Xeloda since the last week in December. The breast "tumor" is FINALLY shrinking but I am having all these other issues.

I had back/rib/scapula/ elbow pain while on Taxol last fall which resolved off Taxol but has now come back. Bone mets or side effect? The pain is not severe enough yet that I even take tylenol but it is there, intermittent, and mentally annoying.

I have had blurry vision for about 3 weeks. I saw an eye doc who said it was correctable so unlikely to be a sign of eye or brain mets. The vision is pretty bad at times, however, and I think worsening or at least worse than it was a few weeks ago. Typing this message is painful as my computer vision is the pits. Prior to this I was 20/20 8 years post- LASIK eye surgery. In bright light or when looking at the computer screen I have a bit of double vision (worse in the right eye).

Last and probably least is an annoying minor cough that I am hoping is from post nasal drip or something else benign. It feels more like a tickle.

I am only 33 and have never had pain issues or really any medical problems prior to my BC diagnosis last year.

Thoughts? Am I crazy? I am scheduled for a PET next month but have not had a brain scan. I guess I need one but am still holding out hope the vision issues are chemo-related.

**Sorry for any typos. I don't have the "eye energy" to proof read!**

Thank you for any response!

Lori

Re: Tykerb/Xeloda, side effects??
 

Lori,

Sorry you have to be worried over the side effects. There's a xeloda side effect thread you can retrieve by using the 'Search' window on top of the Board.

Here's a link that contains information on Tykerb:

http://www.chemocare.com/bio/TYKERB.asp

I hope all the issues you are experiencing will be resolved soon.

Re: Tykerb/Xeloda, side effects??
 

Thanks, Jackie!

Re: Tykerb/Xeloda, side effects??
 

Hi Lori
Sorry I don't have any info on xeloda/tykerb side effects but just wanted to add a bit about pain and vision.I also had bad joint/bone pain on taxotere (same family as taxol last year and was convinced I had bone mets. It subsided once I stopped but now comes back at times and is really annoying.You are certainly NOT going mad.
As for the vision issues.Again I had blurry vision on taxotere and still do now.Mine also corrects but I am aware that my vision has deteriorated since taxotere. There is a thread on the board about post chemo vision changes which seem to be quite common.
Hope this helps.
Ellie

Re: Tykerb/Xeloda, side effects??
 

Thanks, Elle! This vison thing is driving me crazy! Some days are more tolerable than others and if I can rest my eyes throughout the day (usually don't have time for this) and use drops constantly it helps a bit. The only time I can see pretty clearly is in the morning right after I get up.

Anyway, thanks again!

Re: Tykerb/Xeloda, side effects??
 

Lori
Forgot to say that I am really pleased to hear that you are now on something that is shrinking the breast tumour.I am keeping my fingers tightly crossed that this gets you to surgery.
Ellie

Re: Tykerb/Xeloda, side effects??
 

Hi Lori,
I just started Tykerb/Xeloda last week, and so far have only had to deal with sporadic diarhhea, and remembering to take the pills! How are you doing on it? I seem to remember reading somewhere (maybe on this board?) that the minor cough you mentioned is a side effect but I could be mistaken. As far as your vision, over the years I've had taxotere, taxol, and abraxane (just finished that in November), and noticed on each that my vision got worse. And I became extremely sensitive to light on the taxol. Each time it would resolve and get better. I mentioned this to my onc after finishing the abraxane but his lack of response told me he didn't see a connection. Don't know why, because it does seem to be a common side effect. As others recommended, do a search for the T/X side effects, you'll find a lot of tips for managing the side effects. Here's hoping we both do well on this combo!
Peace and Blessings

Re: Tykerb/Xeloda, side effects??
 

Thanks, Ellie!

Liz, The T/X combo is very tolerable. My biggest definite side effect is the little cuts I get on the ends of my fingers...very annoying but in the grand scheme of things not a big deal. I have been fortunate to not have any diarrhea and only a brief episode of the rash. Last week I had 2-3 days of constant and very disturbing palpitations (premature ventricular contractions on EKG). This bought me a CT of my chest to rule out pulmonary embolus. Luckily it was normal...no PE, no fluid in my lungs, no signs of lung mets. I see my onc this week and will likely need an echo to look for a chemo-induced cardiomyopathy. I also read xeloda can causes arrythmia issues. I am off the xeloda this week and the palpitations have resolved. I am really hoping the xeloda is not the cause because it is working , and I don't want to stop it! As for the blurred/double vision I think I will be requesting a brain MRI. My near vision as gone to total h*ll. I had some blurry vision issues with Taxol but nothing like this.

I hope you do well on this combo! Thanks for your response!

Re: Tykerb/Xeloda, side effects??
 

Hi Lori
Really glad you are tolerating this combo.A lot of women seem to have had a lot of success with it.
Sorry about the palpitations but hoping they are nothing that can't be resolved quickly.
Glad you are requesting a brain MRI as this will reassure you about the vision issues.I have noticed though that a lot of women seem to get deterirating vision on and after chemo.
Love Ellie

Re: Tykerb/Xeloda, side effects??
 

My most annoying side effect so far [two rounds of Tykerb and Xeloda] are the finger tip splits which I am successfully treating with Triple Lanolin Aloe Vera.

My proctologist suggested more fiber for the Big D, and so CornBread, Corn Flakes, and Corn Chips, but NOT corn.

This is a process and I'm adjusting my thinking from Survived Cancer to Dying of Cancer, to Living with Cancer. I perfer Living with Cancer, as a mental attitude. It does take some management to get it all right.

Susanne
HER2 positive, and - as my diagnosis is 4 years old - I don't remember the rest. Three surgeries, radiation, Herceptin until it broke my heart, Femara then Aromasin. Now Tykerb and Xeloda. Rock on!

Re: Tykerb/Xeloda, side effects??
 

Thanks again, everyone.

Brain MRI last night so waiting for the results today. Waiting after the scan is done seems so much worse than waiting to have the scan! I keep telling myself that whatever is happening with my body is happening whether or not I officially know about it.

Take care amd have a great week!

Re: Tykerb/Xeloda, side effects??
 

by the way, Susanne....love your siggy line "HER2 positive, and - as my diagnosis is 4 years old - I don't remember the rest."

LOL

Re: Tykerb/Xeloda, side effects??
 

Hi Lori,
Just wanted to know about the results of your brain MRI, maybe you posted that elsewhere? Hope everything came out great!

Re: Tykerb/Xeloda, side effects??
 

Liz- I must have chemo brain because I swear I posted my results on here! My brain MRI was clear, thank God. My vision is a mess but I can mentally deal with it much better knowing it is not being caused by a big brain lesion. I go back to MDA next week for PEt and follow-up and I am just hopoing I get good news on my PET scan as well.

How are you doing on the T/X combo? I hope you are doing well. I do notice the back/rib/sternal pain seems to get better the week I am off Xeolda.

Thanks for checking on me!

Lori

Re: Tykerb/Xeloda, side effects??
 

Hi Lori
Great news about the brain MRI. I am so pleased.Sending you lots of positive thoughts and prayers for further good news.
Ellie

Re: Tykerb/Xeloda, side effects??
 

Ellie,

Thanks so much! How are you doing?

Lori

Re: Tykerb/Xeloda, side effects??
 

Hi Lori
So far so good.Will no doubt have scanxiety again in a few weeks when 6 mothly scans due but for today trying hard to live in the here and now, something I find really difficult as I have always been a planner!!
Has your vision improved?

Ellie

Re: Tykerb/Xeloda, side effects??
 

Yes, I'm a planner, too... Tired as I was of my darling Doctor's "it will be all right," I asked "How long would I have if I stopped all meds?" "Less than a year," was his answer. I have no plans of stopping, but I now have a baseline from which to work. Don't let this scare you. Really, the difference between us and the average schlump is we know for sure we won't live forever. Watch them at the gym trying to outrun death. Tain't pretty.

Susanne
Surgery X3 in 2006, had everything, reacted to everything, hanging in there. :-)

Re: Tykerb/Xeloda, side effects??
 

Just an update...went to MDA this week. My PET not only showed not evidence of mets but also no evidence of active cancer in the breast! I was SHOCKED. My ultraound confirmed scar tissue in the breast but does not look like active disease. I am FINALLY ready for surgery!! I realize there is likely still a decent amount of microscopic cancer in the breast, but this is a hige change from my PET 3 months ago which showed a ton of FDG activity in the breast.

Anyway, just thought I would share.

Thanks, everyone! Ellie, hope your upcoming scans go well!

Re: Tykerb/Xeloda, side effects??
 

Lori,
What AWESOME news! I can imagine how you're having a hard time wrapping your brain around it! Very cool! If there's no tumor left, what is the surgery? Mastectomy? Congratulations again, and may we all have such stellar results from this combo! :)