Failed Xeloda...now what

Sheila · 06-01-2007, 05:29 AM

After 1 year of fairly good response, Xeloda has stopped working on me...I was taken off 2 weeks ago....it was a combo of worsening side effects and no shrinkage of neck nodes....so now it is on to Abraxane....my onc. wants the Xeloda to be out of my system totally (the side effects) before adding the Abraxane to my Herceptin. She is not ready to use Tykerb yet as the Herceptin is keeping things contained to the neck nodes. I am disapointed as Xeloda has been easy...hoping the Abraxane will do the trick, or at least keep me stable. She is planning on doing the Abarane every 3 weeks with the Herceptin, even though news from San Antonio said weekly was as good if not better. She said she has not seen this in her patients, that the better response is every 3 weeks. So just wondering from all you Abaxane Divas out there, what to expect as far as side effects....to me, preparation is important. I am hoping my veins hold out, I have been through 4 years of treatment without a port, but my veins are scarring so that may be next. This news and change is coming at a tiome where I feel emotionally and physically exhausted...my best friend is still hanging on but barely there, little or no response. I still go to be with her every day if possible, I know the end is near, but I am still not prepared to let her go. Are we ever?
Thank you all for all your prayers for her...my hope now is that she can go peacefully, watching her slip away slowly has taken a toll.
Again, thanks for your prayers and any advice you can give me on Abraxane...hair loss, nausea, energy level....you are the best resource!!!!!!!!

Becky · 06-01-2007, 05:40 AM

Dear Sheila

I am so sorry about not only that Xeloda is failing but also about your dear friend.

As far as Abraxane - I took Taxol (same active but different emulsification system). Because of this difference, Abraxane doesn't need steroid or antihistamine use so it makes it much easier to take. Others on this board who have or are using it can get into if there are other side effects. HOWEVER, the reason (beyond the personal) that I am responding to you is that the presentation at San Antonio states that weekly Abraxane (3 weeks on, one week off) is far superior than the every 3 week dose. It also makes Abraxane better than the other taxanes as well. You should discuss this with your onc because not only is it better but the lower dose causes less side effects too. I hope this helps you out my friend.

Love and hugs

IRENE FROM TAMPA · 06-01-2007, 06:47 AM

Hi Sheila

I just found out this a.m. that a friend I met through survivor camp passed this morning. She had ovarian cancer several years ago and it came back and just got out of control for her. Very sad so I know how you must be feeling about your friend.

I am sorry the Xeloda has stopped for but you seem to have gotten a whole year out of it. That was good. I myself am considering getting a break from the Xeloda due to severe hand/foot issues. My CEA went up a tiny bit yesterday and I rescan in late June and we will see how everything is going then. I may have to move on to something different myself if I show progession. I took Abraxane a couple of years ago and I found it to be a very easy drug. I did not have any side effects from it that I can recall. I don't believe I lost my hair while on it either if I am becalling correctly. I did take it on a weekly basis and my onc at Moffitt said it would work better this way. It keeps something in your system constant and side effect are less drastic with a lesser dose. It worked for me. I think it will for you also.

Good luck Sheila and stay positive.

Shell · 06-01-2007, 08:47 AM

Dear Sheila-

I am sorry about your news, and know you are in my thoughts. I got a bit longer from xeloda, and know the mixed feelings - but it is amazing what we endure with the H/F issues - after I went off it I wondered how i managed. I never had abraxane, only taxotere, so I'll defer to the experts on that one. But I did not lose my hair on it, and especially if you go weekly, you shouldn't either.

Keep your chin up, and thanks for sharing.

kind regards,

Mary Jo · 06-01-2007, 08:55 AM

Dear Sheila,

Truly my heart aches for you. Life can be so hard and if only words could really make a difference. I ask God to hold you close, to give you strength and for His peace to surround you.

Love & hugs I send you,

Mary Jo

Lala · 06-01-2007, 09:21 AM

Shelia

I was on Abraxane Carboplatin Herception Zometa for 6 months.
My schedule of treatment was 3 weeks on 1 week off. The Zometa was infused once a month. I had no major side effects. I only had occasional low red and white blood counts.

Overall I had a very good response to this combination. This was my first line of chemotherapy. Prior to this line I did Avastin Herceptin for 6 months. I found Abraxane easy to tolerate; I needed no steroids to preload only Aloxi was used as an anti nausea drug. I did not even have to take anti nausea meds like compazine. I have one friend that has taken Abraxane alone and had a full response and is NED today. In my opinion Abraxane is the best taxane drug out there.

I wish you the best!

Adriana Mangus · 06-01-2007, 10:55 AM

Sheila: You have always been so positive, anytime I've asked you for advice you have come through. Do not despair. There are a lot of different treatments out there..

Xeloda did not work for me, I was dissapointed but not willing to give up, ever!

I'm back on navelbine since it did wonders for me almost four years ago, if this time around does not work, we will move into the next one.....and the next one,

Are you going to visit Joe and Christine?; since you are in the Chicago area it would be nice if you could hang out there so you can gather info for your sisters.

Sending you a BIG HUG, hang in there.

vickie h · 06-01-2007, 01:21 PM

Dear Sheila, I would ask your Onc again about the weekly versus every 3 weeks on Abraxane. It has been extensively studied and conclusive evidence shows the weekly is far superior to the other. Also, I would take a good look at Herceptin. Many patients are failing their chemo regimines because Herceptin can at some point quit working. I would take a seriuous look at Tykerb, which is now being given to those who were fine with Herceptin for years but have now failed on that regime. Tykerb is very promising and a new drug that is doing wonders for thousands of cancer patients, I am taking Xeloda with Tykerb and my skin mets have almost disappeared after three weeks. Dennis Slamon, highly respected Onc in Calif also agrees that Abraxane should be given weekly with Herceptin (much mor3e effective). My prayers go out to you and I hope you have a sasy in your chemo treatment and that your Onc listens carefully to you. I am sure he/she has your best interests at heart, though it always pays to be pro=active in your care. Much love and Hugs to you, Vickie

RobinP · 06-01-2007, 09:50 PM

Sheila, I'm so sorry that things aren't going well lately. At the same time, I'm hopeful and praying that Abraxane will be something very tolerable and effective. Keep your chin up my friend.

tousled1 · 06-02-2007, 02:24 AM

Sheila,

I'm so sorry to hear that the Xeloda has stopped working for you. I can't offer you any first hand infomration regarding Abraxane as I had taken Taxatore. From everything I've read, Abraxane appears to be the best of the Taxane drugs and also has the fewest side effects. I sincerely hope that the Abraxane does the trick. Your friend is very fortunate to have someone who is so caring. You are both in my prayers

DonnaD · 06-02-2007, 04:58 AM

Shelia,
I am so sorry to hear Xeloda has stopped working. This is such a hard time for you. You and your friend are in my prayers. It seems many on the board are struggling right now.

I know you will continue to research and learn what treatment and schedule is best for you. You have been such a resource for so many.

My onc said the same thing about Tykerb. Hoping with ASCO going on right now we will all gain new knowledge from the experts. Do you know if anyone from the oncology department is at ASCO? I forgot to ask the last time I was in.

Consider yourself hugged dear friend.
Donna

Sheila · 06-02-2007, 05:38 AM

Donna

I believe Dr. Cobleigh will be there, she was at San Antonio. And Dr. Usha will probably be there....I was supposed to be at ASCO but with all going on, it didn't work out. When I was with her yesterday, she told me she would not be here today....it was so stormy when I was at her house yesterday...she lives in Utica, the town that had so much damage from the F4 tornado a couple years ago.

Lolly · 06-05-2007, 05:14 PM

Sheila, I'm so sorry to hear about your friend. I am keeping both of you in my prayers as I know how difficult this is.

It seems we're still on the same wave length re: stopping Xeloda and moving on to Abraxane. Although I'm now on Tykerb instead of Herceptin.
Abraxane has been very, very tolerable for me, but I'm on the weekly dose; going into week seven, and all the baddies are shrinking, and some of the smaller ones can no longer be felt

I have had stomach issues with prior infused chemo's so am on Zofran as a premed, but am planning to do without it tomorrow as the stomach has settled down alot. Never did have naseau, but probably would have for the first few weeks without Zofran as I felt "off" for the first 24 hours.

Blood counts are holding up beautifully, haven't had to miss any infusions yet which is a first for me; I'm usually one week on, one week off because of low whites. I'm glad for my port, as of course labs have to be drawn each time to make sure counts are good, and my lymphedema comprimised arms don't like sticks anymore!

Energy levels are good, but I'm careful to rest when I need to, otherwise I "bottom out" and am tired for the rest of the day.

Hair loss is minimal so far, just some thinning.

All in all, one of the easiest so far, except for Xeloda. Maybe for you it will be easier than Xeloda, as I don't think H/F is an issue and I'm sure you're ready for a break from that.

Hope this helps, and hope you can talk to your onc about rethinking the 3 weekly, as weekly does seem to be the better course.

<3 Lolly

mslinda · 06-05-2007, 05:54 PM

Sheila, I am not having any of the problems that you and the ones who answered this post. I just wanted to give you some encouragement, as you have encouraged others as well as myself in the past. I truly hope and pray that the Abraxane will work for you. I am praying that God will give you strength while you are by your friends side. You must be a very special person.

Linda
S. Mississippi

chrisy · 06-06-2007, 03:46 PM

Dear Sheila,

It sounds like you are bearing a heavy load. No wonder you feel drained emotionally and physically. You are a good friend, and a very special person. We all lean on you for your words of encouragement and wisdom. Stay strong, my friend, and take care of you. Sounds like Lolly is having great success with the abraxane for her very similar situation - this could be a great solution for you, too. Too bad, just when sandals were coming into season! At least you can give your hands and feet some relief.

Take care, my friend. As you have said to many of us before, it's in God's hands and he will take good care of you

Much love
Chris

Mary Anne in TX · 06-06-2007, 05:10 PM

Hi Sheila! You are so on my mind as you watch your friend lose ground and face your own treatment change. May God send His Angels at the most perfect time! And may you find some peace in such a painful situation. I didn't take Abraxane, but read tons about it thinking that I might. It surely does get great reviews for results and lack of side effects. Do you know yet when you'll start? May you be chased down by smiles and laughter to lighten your load today! ma

jones7676 · 06-06-2007, 05:52 PM

Stay strong. You are an amazing person and your posts have kept my spirits up many times when I was down. I hope that your new chemo works wonders for you...

angelwings · 06-06-2007, 09:43 PM

Xeloda does not work if you are taking OTC drugs. If this is your case then I think you have an answer for the failure of this medicine. There are lots of reasons for it not to work; I read a lot of information from this site http://www.drugdelivery.ca/ about Xeloda. I firmly believe that you need to read them to understand the whole theory of this medicine.

StephN · 06-06-2007, 10:11 PM

The site mentioned in the above post is a Canadian drug supplier. Some kind of come-on perhaps?

Anyways, Sheila - I am bummed that you are having to go the next step into some "harder" chemos to get control of those stubborn nodes. But, I know a couple of ladies here with your same problem and their nodes are now has-beens.

They both took the weekly dose. One had to add Avastin for about 6 doses as well, but is doing fine right now.

I send healing thoughts for you and for your dear friend's comfort as her last days approach. This situation has been very burdonsome for you, and I know it is your nature to help even if to your own detriment.

Stay strong and reserve some energy for your own fight.