Changing to Xeloda : Hi ladies. Had... - SHARE Metastatic ...

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Changing to Xeloda

Duffles
Duffles

Hi ladies. Had terrible tumor on spine in November so had to have a spinal fusion and rads before I could begin any chemo drugs. Been on Letrozole . Had 2 weeks on Ibrance but blood counts went so low stopped in 2 weeks. New PET showed progression and new bone mets!

Onc switching me to Xeloda. Thinks Ibrance effect too risky! I just want to start something that slows this cancer! Letrozole was ineffective I guess. Has anyone had help from Xeloda? Please I need some support/advice!

13 Replies
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Hi Duffles,

I can offer you support but, I'm sorry, not advice! I'm still on Faslo + Ibrance and am not familiar with Xeloda, but I do know how scary it can be to switch treatments. I think that the sequence the follow is sort of "broad brush", i.e. in the order of what works for most people. One never knows which treatment might be the one that takes hold...I'm hoping that the Xeloda is this for you!

Take care,

Lynn

What dose of Ibrance were you on? I had to drop down to 75 mg because of my neutrophils but it has worked for 2 years.

Duffles
Duffles
in reply to Red71

I was on the 125 for only 13 days! Was going to try lower dose...but the PET SCAN showed so much progression, and my blood counts dropped so drastically my onc wants me to get going on something that might be effective. (Me too...haven’t really treated the cancer with drugs except Letrozole.) glad it is working for you...Ibrance gets the most positive press!

Red71
Red71
in reply to Duffles

I’m glad the Letrozol worked for you for as long as it did. I had no side effects on it at all when I was on it for 5 years prophylactically after my original breast cancer. It was decided I didn’t need to be on it after that because I had such low chances of recurrence. I will always wonder how long I would have had if I had stayed on it. I only lasted three years off of it and when I was diagnosed my bone lesions were pretty widespread in hip and back and ribs. Good luck with the Xeloda. I’m hoping your blood counts like it better! Elaine

I have been on Xeloda for several months and my tumor markers have continued to come down significantly. A recent pet scan revealed no new tumors in my liver and the ones that are there are smaller and less distinct. The only ill effects I’ve suffered is with the hand foot syndrome which has been troublesome. I’ve lost my fingerprints which causes the end of my fingers to be very slick...not good for dealing with buttons and other small items and my glassware collection has been depleted because it’s hard to hold on to items.

But the feet have been the biggest problem....red sensitive soles and my two big toenails have lifted and my podiatrist had to cut them away. Not good for sandal wear.

All in all I am pleased that xyloda is keeping my tumors from spreading.

Good luck to you,

Anna

Duffles
Duffles
in reply to LGIA

Thanks. Glad you are doing well!

Hi.

I delayed responding because I was waiting for the results of my PTscan. I have been on Xeloda since February 2019. I have ER+, HER2- MBC. When I switched to Xeloda, my cancer had spread to my liver. My liver lesions had resolved after a few months on Xeloda. My latest PTscan shows stability - no progression. However, my Sept 2019 PTscan showed a new mass in my healthy breast. turned out to be ER+, HER2+, which does not respond to Xeloda, so my oncologist added a HER2+ drug to the mix - Hercepton.

Xeloda has been an easy drug for me with the exception of the hand/foot syndrome (more foot than hand). For me, prevention has helped the most. I don't take long walks and hikes like I used to. One hour seems to be my limit. I exercise regularly, but have cut back on any cardio that causes friction. I apply cream at least twice a day and soak my feet in cold water when they get too red.

I really hope Xeloda works for you. Switching treatments is always a tough time - worrying whether the new drug will be effective, worrying about side effects. Not easy.

Duffles
Duffles
in reply to barbarac76

Thanks so much for the info. I am really nervous because I am not really on any treatments except Letrozole and only the 2 weeks of IBRANCE that did a number on my my blood counts! My bone mets got worse and increased! Plus I have a couple broken bones now, so I am eager to try ANYTHING at this point! I really appreciate your advice!

barbarac76
barbarac76
in reply to Duffles

You're really going through a tough time. I feel for you. What type of breast cancer to you have?

Duffles
Duffles
in reply to barbarac76

I had lobular breast cancer 16 years ago...and came back to my bones! Huge spine tumor so had to have immediate spinal fusion in November which delayed any systemic treatments for months. So MBC is new to me, and treatments and side effects are confusing and depressing at times. Just trying to cope!

barbarac76
barbarac76
in reply to Duffles

It is overwhelming when you are first diagnosed with MBC and you have the added complication of damage to your bones. That's a lot to take in. I hope you can sense from other posts that the beginning (when you first get the MBC diagnosis) is the worst. I had a very hard time wrapping my head around it. I was crying regularly and unable to absorb all the information that was being thrown at me. Once your oncologist puts you on the right path, I think you will be able to cope and feel more hopeful knowing that there are many treatment options out there.

It sounds like your cancer is ER+ if your oncologist put you on Letrozole. Is that your understanding? Also, do you know if you are HER2+ (positive) or HER2- (negative)?

Duffles
Duffles
in reply to barbarac76

Still ER+ but only slightly HER2+ Compared to original cancer. Will be stopping Letrozole when I get the Xeloda. Thanks for the support...I just get impatient.

What is your history?

barbarac76
barbarac76
in reply to Duffles

Diagnosed with MBC in August , 2013 (no previous breast cancer). ER+, HER2- in several lymph nodes, lungs, and T9 vertebrae. There has been progression twice to my liver, but switching treatments was successful in resolving the lesions.

Treatments have been Letrozole (Ibrance wasn't around), then Afinitor and Exemestane, then Faslodex and Ibrance, and now Xeloda since February 2019.

When an ER+, HER2+ mass was found in my healthy breast in September, my oncologist added Herceptin to the mix.

Also, Zometa infusions (every three months) for about 5 years, then switched to Xgeva injections (also, every three months).

I really hope you do well with Xeloda. It's been my experience and the experience of other women on this site that the side effects are manageable.

One last note about Xeloda - my original dosage was 1500mg (3 tablets) in the morning and another 1500mg in the evening. After 6 months, dose was reduced by 500mg in the evening because of hand/foot syndrome. My oncologist and others told me that a reduction after about 6 months was normal. Also, the protocol at my cancer center is one week on, one week off. Others on this site have said they take it two weeks on, one week off.

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