Xeloda Vacation For Me Didn't last

Sheila · 08-22-2006, 12:45 PM

Well, Sorry to say my Xeloda vacation was short lived....I have been off for 1 month, and at that time the nodes in my neck had all but disappeared after 6 cycles of Xeloda...but THEY'RE BACK.....so I'm BACK on Xeloda starting today....hope it works again...those lymph nodes in the neck are agressive and a PAIN IN THE BUTT!!!!!

tousled1 · 08-22-2006, 12:47 PM

Sorry to hear that you're back on treatment. Perhaps this time will do the trick

janet/FL · 08-22-2006, 01:04 PM

Shiela,
That is real disappointing. I am sure you were happy to be off chemo for a time. Hopefully Xedola will do its thing and they will soon be gone again. Any chance of adding Tykerb to the mix?
Hugs,
Janet

mts · 08-22-2006, 01:22 PM

Hello Sheila,

What treatments have you had since your dx? How long have you been on Xeloda? Was this the 1st time you were off Xeloda?
Sorry to be so curious, but what you are doing/have done may help others (including me).

Maria MTS

Cathya · 08-22-2006, 01:24 PM

Sheila;

One month off is not very long. I know this drug is very good but I wonder if you need to add another one to the mix to try to attack these beasts more aggessively. I keep hearing that Avastin is good.....the drug that hits the blood vessels.....does your onc discuss this with you. Also, do you use the Serum Her2 test and if so, what kind of numbers and variation with treatment do you see?

Best regards,

Cathy

rinaina · 08-22-2006, 03:09 PM

Sorry your vacation from Xeloda didn't last a lot longer...like forever. You have such a great attitude...I sit in awe of so many of the brave and positive patients. This disease scares me so much but I try to take lessons from all the great members on here and keep myself busy and remind myself how much a positive attitude can have an effect on things. Hang in there and keep fighting as I know you will.

julierene · 08-22-2006, 03:24 PM

Yeah, I would see about adding one more?

I think of the chemo as my "artificial immune system"... I can't hate it then.

Hope you get it all worked out. Your Illinois Friend, Julie

koolbreeze · 08-22-2006, 03:54 PM

Oh Sheila, I am so sorry. I certainly hope that resuming your chemo will reduce the nodes. Hugs to you. Linda

IRENE FROM TAMPA · 08-22-2006, 03:56 PM

on the Tykerb EAP use Sheila?

Were you taking the Xeloda with the Herceptin. If you failed with these I would think you would qualify for the compassion use.

Let me know how it turns out.

Ceesun · 08-22-2006, 04:15 PM

Sheila, Hey, let's be Xeloda buddies-just picked up my prescription today and begin this Thursday. I am in a clinical trial with Xeloda and Navelbine and Herceptin. I progressed witha lung nodule while on Herceptin. You have a great attitude, I agree. May God Bless, Ceesun aka Cathy

Sheila · 08-22-2006, 04:29 PM

The Xeloda worked great while I took it with Herceptin...I was progressing with the nodes on Herceptin alone so Xeloda was added back in March...I did 6 cycles, and the nodes were no longer palpable so the onc. told be I could take a 6 week break and see what happened. Well after being off only 1 month, the nodes started to grow. I just received my Herceptin yesterday, but my onc. wasn't in so I called today and she said to start back on it. I will see her in 3 weeks and see if she wants to add something. My history as follows is

Stage 1 Left Mastectomy 2/2002, Her2 +++, ER- PR-, 0.7cm tumor, clean nodes, no chemo recommended.

6/2003 L reconstruction with tissue expander and saline implant

9/2003 STAGE IV....During reconstruction phase, enlarged nodes found in my L neck above collarbone. Nodes removed, tested: Her2+++ Er- PR-....began Herceptin

12/2005 Nodes began to enlarge again after a cold....watch and wait as scans didn't even show them.

3/2006 Xeloda 2500 mg daily 1500am, 1000pm

7/2006 Finished 6 cycles of Xeloda, nodes not palpable, Drug Holiday Planned

8/2006 Nodes starting to grow again after 1 month off Xeloda...back on Xeloda 2500 mg daily

It seems that the nodes in the neck are very stubborn and may need continual treatment...others like Lolly have had the same problem.

I will check into the Tykerb if the Xeloda doesn't work this time!

Thank You all for all the great advice and concern.....you are AMAZING and always lift my spirits!

Becky · 08-22-2006, 05:56 PM

Dear Sheila

I'm sorry to hear your chemo break was not permanent retirement. Pesky nodes. My thoughts are with you.

Kindest regards

Becky

08-22-2006, 06:10 PM

Sheila - I'm sorry to hear that you will be waging war again. Best of luck & hugs. I may be starting xeloda soon and would like to know what anti-nausea med(s) you have taken.

I appreciate any info you can give regarding side effects also. I have mets to bone and liver. (er/pr- too)

Thanks and again, wish you well !!

chrisy · 08-22-2006, 07:23 PM

Well, Sheila, that's a bummer.

Time to suit up and get back in the game. I know you will, sorry your vacation was disappointingly short!

Sheila · 08-22-2006, 07:56 PM

Sheryl
I don't take anything with the Xeloda for anti nausea...I have not had any...I seemed a little more tired at first, the worse thing for me is my eyes water MORE, my nose runs MORE and my legs ache when I lie down...I have not had the hand foot syndrome some have had, and my blood counts have remained normal so far...I really find it easy to take...hope it is the same for you!

Sheila · 08-22-2006, 07:59 PM

Chrisy
That is also my youngest sisters name!..She is my rock to lean on! Why is the song back in the saddle again keep running through my head today!!!!!!!
Oh well, put the gloves back on...2 doses and my nose and eyes are back watering!!!!

Shell · 08-22-2006, 08:01 PM

Sheila-

Sorry you are back on xeloda so soon - but I am thrilled you don't get the H/F some of us experience.

Take care,
Shell

Lolly · 08-22-2006, 09:45 PM

Sheila, well darn!! And double darn! I know the neck nodes can be stubborn, but mine have finally seemingly "cleared up". Time will tell, but I remain on my small dose (500 mg 2 x's daily) to treat the remaining axilla nodes.

I know you can get the upper hand again, but glad you did get a small vacation anyway

<3 Lolly

08-23-2006, 01:31 AM

Sheila thank you for the info - I was told that I might need anti-nausea meds with xeloda. Was there a specific reason why you did not require them?
More questions - do you take any vitamin/mineral supplements? Are you following any 'special' diet?

Again - appreciate the info you provide... :-)

Sheila · 08-23-2006, 04:55 AM

Sheryl
I was not told I would need any, and I have not had any nausea whatsoever....I don't take any vitamins or supplements right now, and I maintain the same diet I was on before...just a regular diet. Like I said, my energy level was low the first few days, but as I adjusted, I feel no different now...the hardest thing is to remember to take the pillls (after food) 2x a day....I was also told no Advil or aspirin, tylenol only for any aches or pains....I am hoping it is as easy for you...I think alot depends on the dosage...the 2500mg I am on is the "new thought" regime...they used to give 4000 - 5000mg a day and found that 2500mg is just as benenficial without side effects!