• From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Topic: dizziness from xeloda?

Has anyone had this problem? I'm getting dizzy. I used to suffer from orthostatic hypotension, which basically meant if I stood up too fast, or bent over to tie my shoe and stood straight up, the world would go grey and I would be really happy to hang on to whatever was in reach! Usually a wall, thankfully. Or a chair.
Now I'm getting dizzy a different way. I lay down and the room spins. Just once. I can kinda feel the blood flowing. The only problem is that my right eye is blurry, too. I have a kind of film over it.
So my onc wants an MRI. She's concerned. I was hoping she would say it was the Xeloda... sad
Has anyone had a "drunken room spinning" feeling when on Xeloda? When they lay down for the night??

Kris

Don't just have minutes in the day; have moments in time.

2 Reply by PCL1029 (edited by PCL1029 Mon, 30 Apr 2012 21:40:26)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: dizziness from xeloda?

Hi,
for your information
Adverse drug reaction for Xeloda including the following.
1.Anemia.(72%-80% pt. experienced this S.E. and severe in upto 9.6% pt.)
2.dizziness
3.hypotension(0.2-1.2%).(including orthostatic hypotension--=0.8%)
4.stroke.
5.hypokalemia.
6.syncope(fainting).
7.vertigo(a feeling of motion ie: spinning movement ,while patient is stationary-not moving.)
9.visual impariment.
there are other side effects of Xyloda but the above side effects are more likely related to your situation of vertigo or vision problems.
Lab test like CBC and BMP can be of help;but ER visit or doctor's office next day or ASAP is recommended.
referrence;Clinicalpharmacology-ip.com
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

Thanks.
I will bring this up to them via phone today. I wonder why when I asked they didn't seem to think it was Xeloda? And I specifically asked because this started a couple of days into my 2nd cycle. And I take 4300mg a day. 7 on/7 off.
And I already had a history of orthostatic hypotension.
It's making it hard to want to ride the scooter, that's for sure!!! I certainly don't want to get dizzy when I'm on 4 wheels, let alone 2.

They gave me a different card.
1. Nausea and vomiting
2. diarrhea
3. Mouth sores
4. loss of appetite
5. abdominal pain
6. fatigue
7. swelling in hands and feet
8. rare heart damage - they said to worry about pain in chest or arm or racing heart.
9. decrease in blood cells
10. abnormal liver functions
11. hand/foot syndrome

Not a word about dizziness!!! Wonder why?

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: dizziness from xeloda?

Hi,
the card you had is general information about Xeloda for patients.( list of side effects that are MOST common to patients)
the info I listed above is for  the Health professionals .(additional side effects which are pertaining to the drug Xeloda. I only list the ones that may be related to your case;there are still a long list of adverse drug reactions that I have not mentioned.)
and in your case,it is not their fault to give you a list that did not list all the side effects; and in the final analysis, there is possibility that your problem may not even related to the drug itself.

All i can say is that each case of this disease is different in responses to chemotherapy or radiation treatments . and that is why knowledge is power for our patients who seek them.

God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

I totally understand. I went to Genentech's website to look up Xeloda's side effects. Listed on another page under "other side effects" is dizziness and blurry vision (both less than 2%)! I can't remember if o.h. was on that page or not. But before I could call my onc, Genentech themselves called me to check to see if I got my card, etc. The "nurse" on the phone ran off a list of side effects, and after about 20, guess what she got to? Dizziness. A couple of side effects later, she mentioned blurry vision. So when I called my onc's office and talked to the nurse practitioner, I mentioned all this. She didn't seem to want to believe me. I told her to look it up or call Genentech itself and ask.
I am still going for the MRI just in case.
But I have to thank you for posting because I feel soooooo much better now!!! Not nearly as "scanxious" as I was last night. New derivitive of the word "scanxiety".
I hope you and all the other moderators' ears were ringing today as I sang your praises on caringbridge!!!! smile

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: dizziness from xeloda?

Kris...Kudos  to you for taking the initiative by contacting the company producing the drug.  And a big thanks to Percy for his continuous offering of his expertise..  This is the reason for the success of this site - patients and caregivers sharing their knowledge with all.
Big, huge, hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

I had my MRI today. It went "well". I am not expecting to hear from Dr. Kemeny today but tomorrow if I don't hear from her by early afternoon I WILL call.

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: dizziness from xeloda?

Kris....you did it  Congratulations.  Fingers are crossed for the absolute, best report.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: dizziness from xeloda?

Hi,
Thanks for your compliment, Marion, just like you said patient and caregiver share their experiences and knowledge to help each other.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

Hi:
MRI was good. Nothing bad in my head...
My nurse said they actually learned something this week. 3 lesser known side effects of Xeloda. Yay me! Oh, joy!
At least they know now in case it happens again. I'm doing better. I doubled up on my allergy pills. I don't take the full dose. Ears itch less. Dizziness is much better. Eye still blurry, but not as bad. So I'll just wait it out. Much better than the MRI showing something bad!

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: dizziness from xeloda?

Kris...fantastic news.  Time to unlock my fingers.  I must admit though that I expected for your "head" to be just fine.
Hugs and more hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

And now it's mentally better, too, Marion! Dr. K had me more than a little scared when she wanted the MRI because this was not a side effect. Well, I guess we can teach our oncs stuff, too, huh? THANK GOD!!!!

Kris

Don't just have minutes in the day; have moments in time.
  • Registered: Mon, 27 Jun 2011
  • Posts: 435

Re: dizziness from xeloda?

Great Kris!

Take it easy!

Susie

14 Reply by marions (edited by marions Sat, 19 May 2012 01:05:56)

  • Registered: Fri, 12 May 2006
  • Posts: 8,174

Re: dizziness from xeloda?

Kris...agree. There is something to be said for the power of the people; in this case the knowledge shared by those touched by this cancer. I can't imagine for anyone fighting this cancer without the support of our board members.
This is what keeps us going because; one day there will be a cure for this disease.
Hugs,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

I just posted on another topic, but I agree. I don't know how I would have gotten thru this past year without this site. All the support from moderators as well as members. Everyone trying to help based on their experiences.
And so much knowledge passes every day! I try to give my input where I have some experience, but I thank the moderators so much for passing on their knowledge and what they've learned from others on this site. It's a wonderful thing you do.
And, Marion, from your lips to God's ear that they find a cure for this soon!

Kris

Don't just have minutes in the day; have moments in time.

16 Reply by melissapalma (edited by melissapalma Thu, 17 May 2012 20:24:08)

  • Registered: Thu, 26 Apr 2012
  • Posts: 49

Re: dizziness from xeloda?

My mother started her first of chemo on Monday plus Xeloda so it is good to be more informed than what oncs can cover in a meeting. I swear they talk and talk and talk and it still doesn't feel thorough enough, or I just can't comprehend it all after a while. I take notes but Xeloda, for example, has like 4 or 5 side effects listed in my notes vs. the thorough ones listed here. Thanks for the rich information here!

Kris, I am curious, was the Xeloda dosage adjusted or how did they address your dizziness?

  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

Melissa:
They didn't adjust the Xeloda. Once I started taking the preferred amounts of allergy pills, most of it went away. As long as I know when I lay down the room might spin, I'm prepared. It doesn't happen during the course of the day, thankfully.
I hope your mother weathers the Xeloda well. There are some side effects that most people get. Of course, since I'm such a rare human being, I get the rare ones. smile
Actually, I do have some burning in my hands and feet. They are getting red and a little painful, but no blisters yet. I will call my onc's office today to see if they want me to lower the dosage or just push on thru. I only have 4 days left in this final cycle. I hope to hear after my CT scan on 23rd that we're a go for resection.
Good luck to your mom You can get more Xeloda information by going to Genentech's website. And if your copay is high for this (mine was $350) you can get financial help for the pill. I don't remember, but I believe it's about $2000 a year or something like that.

Kris

Don't just have minutes in the day; have moments in time.

18 Reply by PCL1029 (edited by PCL1029 Fri, 18 May 2012 16:27:02)

  • Registered: Fri, 15 Oct 2010
  • Posts: 1,739

Re: dizziness from xeloda?

hi,
The redness of the hands are side effects of the Xeloda, and the doctors will cut your dose down a bit next time you will visit him. but if it is only 4 days left and you will have  7 days off the Xeloda.
If your situation  happens to me like with 4 days left and no blisters and not like purple-red in color and not swelling,I will take it without changing the dose. But I am sure the oncologist will ask you to do  otherwise.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

The redness was better today. Still sore and red, tho. The lines are very defined. So I didn't call. I figure I have 3.5 days left. If I can bear with it, great. If it's too much tomorrow, I'll call the emergency number.
No peeling or blisters yet, but my left thumb DOES feel like a blister is trying to form (I'm left handed, BTW).

Kris

Don't just have minutes in the day; have moments in time.
  • From: Phoenix AZ
  • Registered: Fri, 13 Jan 2006
  • Posts: 8,225

Re: dizziness from xeloda?

Kris, could your left thumb be getting a blister from hitch hiking on a Harley? Sorry, again I could not resist!!!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.
  • From: Willow Grove, PA
  • Registered: Wed, 06 Apr 2011
  • Posts: 775

Re: dizziness from xeloda?

Haha Lainy. No, more like spending too much time in Facebook and cc.org!!!

Kris

Don't just have minutes in the day; have moments in time.