NED with Xeloda

marshakb

Donna, that is great news!  I am on Xeloda/Taxotere, I get cycle #3 next Friday.  Doc said 3 or 4 cycles before scanning.  Hoping to have the great news you got!!!!!  My counts are getting dangerously low each time but I am hanging tight to get some shrinkage to go back to an AI.  Thank you so much for posting such fab news.

Reneepals

Marsha do you know what A.I. you will go on?

marshakb

Not sure Renee, I was on Femara for 10 months so one of the other ones (fingers crossed!)

wayover20

That's FANTASTIC news Donna, congratulations!!  I just finished the second week of Xeloda and go in every 2 weeks for avastin and monthly for zometa.  The xeloda schedule is one week on 1 week off etc to help lessen side effects.  Also dealing with skin mets that's dang hard to treat but we'll see what this does for it.

One day at a time

Pat

DianaT

congrats!!!!!!!!!!!! Praise the LORD!!!!!!!!!!  I LOVE NED!!!!

vivo

Oh Donna that was what I wanted to hear right now! So glad you did it with Xeloda! Have to celebrate Christmas time!!! You are inspiration for me. I am starting Xeloda with Tykerb this week Hope it will work for me too

 Many bravos!

Anonymous

Donna, congrats!

My wife is on Xeloda for 2 wks and your story is extremely inspiring!!!

3katz

bump for immarybell 

getwell

GO DONNA, GO DONNA!!!!!!!!!!

HUGZ,

Pat

Yazmin

Dear Donna:

HEEEE HAAAAA! I am about to start doing cartwheels. I am certainly bouncing off the walls.......Please keep up the good work. Go, Donna, GO, GO, GO.

HOORAY,  HOORAY, it's a Holi-Holi-day

http://www.youtube.com/watch?v=uJkrA6DtDgQ

LC815

Fabulous news Donna . . . way to sail into the holidays and the New Year with NED at the helm!!

Anonymous

bump for Myrajuc

Myrajuc

I am starting with Xeloda in 2 weeks.  This is such great news!  I am just scared of the hand-and-foot side effects.  But I'm hoping it will give me great news.  I will read all the threads for Xeloda.  Thanks for the bump up.

tania73

you go girl, congratulations!

bourscheid

That's great news Donna!  I too am NED on Xeloda.  Stayed on it at a reduced dose to hopefully remain NED.

 Lori

dfleaman

bourscheid,

I am so glad for having NED.  I noticed your dr left you on Xeloda.  I just had my scan yesterday after 3 months of NED.  Dr. did not keep me on any drugs.  I will start back on Zometa next week.  If my scan is not I will start on cemo again.  I asked my dr. if I could stay on just a little bit of Xeloda even though my h/f were bad.  He would not leave me on it. Just wondering why yours left you on it and mine did not.

Donna

Myrajuc

Hi Pat,

I start Xeloda tomorrow, with Tykerb (for the Her2+).  I asked my onc one week on and one week off, since I read that most have that schedule to alleviate some of the SE's.  He wasn't sure it that could be done. He asked me where I read it -- so I told him this board, and also MD from John Hopkins. 

Where are you getting treated?  I am getting 3,000 mg of Xeloda daily (3x500 twice a day).  Is that enough?  I'm getting it as a mono-therapy.  I am just 4 weeks out from left mastectomy.  Early this year it spread to my lungs and bones.  (3 years ago, I had right mastectomy).  I didn't want to do Xeloda and Taxotere.  I just don't want too many SE's. I want quality of life.  I just read you get Avastin.....I wonder if the 1 week on and 1 week off on Xeloda alone is enough?

Hi Donna,

When you say NED, is it from the PET Scan?  PET Scan only?  Which is better PET or CT?   So if nothing lights up, you're NED?  Good news!  I guess I'll get my PET after 2-3 cycles of Xeloda?

Anonymous

My wife is getting 4,000 mg daily (4x500 twice a day), two weeks on - one off schedule. And this is how the most get it first. Only if the SE are severe, they switch to the week-week schedule.

At this moment she's in the middle of the 3rd cycle, the only SE so far are fatigue and some light redness of feet and hands. No reason to change the dose yet.

Myrajuc

Wow 3rd cycle and no hand-and-foot?  I hope that's me.  3rd cycle so you mean, 3 sets of 21 days right?  That's really good!  I really really hope my SE's would be that controlled too, as I plan to travel soon.

Is she only on Xeloda?  Any other combo?

Since I'm HER2+ I take Tykerb too.  Then Zometa for the bones, once a month.  But Tykerb and Zometa are not chemo.  So just Xeloda for me.  For now.  I'm on a 1 week on and 1 week off schedule.  I just really didn't want SEs.

Thanks for responding, I think it's great news! 

MJ6266

Yaaaahoooooo!!!!!!!!!

Anonymous

3rd cycle I mean 3 sets of 21 days, that's right. Today is a 10th day of a third cycle.

The SE of fatigue is severe but she learnt how to manage it. For the HFS she's using the "Udderly Smooth" cream which seems to do it's work since the HFS is very very minor at this time.

Each person is different...

She's got one Aredia shot in December and we're switching to Zometa now. She's taking also Vit. D and Coriolus Versicolor mushrooms.

Take care,

Yan

dfleaman

Myrajuc,

I had multiple mets in liver too many to count. Also, bone mets hips, spine & pelvis.  Did Doxil/Zometa did not work I had progression.  Did Taxetore/avastin/zometa one treatment in hospital for a week.  Went on Xeloda/Zometa.  After 11 weeks had a pet/ct whole body scan.  After scan dr was going to ad Avastin but the scan did not show any mets anywhere.  Dr. was as shocked as I was.  I wish he had left me on something but he would not.  I had my 3 month scan Tuesday and will see him next Tuesday for my Zometa.  I will say that I am worried because I have not been on treatment for 3 months.  Not sure how long you can stay NED.  I noticed that some stay on treatment even when they are NED.  Not sure how drs think.     

Take Care, Donna    

Melanie36

Myrajuc,

I am a little behind Yan (Leprechaun). I am on day 8 of my second cycle. I had HF on the last 3 days of my first cycle that was uncomfortable, but easily do-able.

For the last 2 days the HF was very uncomfortable. My feet feel like they are on FIRE!! I can't walk more than a few feet or stand for more than a few minutes at a time. I spend most of the day with my feet directly on a frozen gel pack. They look like they are severely sunburned.

Today seems better...just some minor throbbing /heat on my heels. I was told by my first onc to use a cream called Lac-hydrin...very greasy and good for keeping skin moisturized, but the Bag Balm seems to work the best...I goop that stuff on 2x/day and they put socks on.

I am constantly worried about every ache or pain that I feel and have been having some mild chest pains... I think I have read of others that experience this too.

hugs for everyone...

Melanie

dreamwriter

Oh boy... I am so happy for you.

katbob

Myrajue-I was on tykerb for 18 months(though not HER2+), had progression in axilla and lung-started on aromasin which held me NED for another 18 months.  In Sept I started xeloda (3000 mg a day,1 week on 1 week off.This was done at UNC-CH and I believe this is the latest trend in using xeloda, as studies have shown that people treated with the lower dose did just as well with fewer side effects.  I have had no side effects other than mild fatigue, and dry fingertips.  Also had a great ct scan in Jan that show decrease from 10mm to 2 mm in lung nodule, so I am very sold on xeloda so far-hope it works well for all of us!  I am now 3 1/2 years out with stage IV and feeling fine.

Anonymous

Regina and Mary,

If that was aimed at me, thank you! But we don't know yet if the Xeloda is actually working. The scans will take place in mid-February. Hopefully, we'll see some remission.

Take care,

Yan

susanmary

Wonderful news

 Hugs 

marynp

I know it's a bit crazy to post a reply here, as this post was posted 8 years ago. I am starting Xeloda and wanted to see if anyone had really good responses from it, so was encouraged by this, however... There is something I don't understand about so many with bone mets saying "NED" My original oncologist (since I became metastatic) said you absolutely can never be NED once you have had bone mets because that means no evidence of disease and there will ALWAYS be evidence that the bone mets were there. Your scans should show multiple areas of sclerosis (scaring) where the mets were. She also said you can't use the term "remission" with regard to solid tumors (which breast cancer is considered) because that term only applies to liquid cancers (like leukemia.) Yes, she was kind of a wet blanket! Still, technically, sclerosis is not evidence of current disease, it is evidence of cancer having BEEN there at one time. Anyway, I am not NED but I do have areas where the cancer is not longer active, just sclerotic bone lesions.

ShetlandPony

Mary, I used the term NEAD -- no evidence of active disease. I was pleased to catch a glimpse of the term NED on some of my clinic notes once, but I know the doc really meant NEAD.

Heidihill

I have been NED or NEAD since 2008 but several years ago my doctors told me they could no longer see any sign I ever had a lesion in my spine. From a bone biology viewpoint it is possible that most of my bone cells had turned over and were replaced by healthy new bone cells, which could take approximately 7 years according to some sources.  I can imagine that not everyone will be regenerating bone, so, yes, in this case the sclerotic lesions could stay unchanged.