Ixempra/Xeloda/Avastin

I have just been put on the cocktail above for my supra-clavicle lymph node involvement. My doctor was doing this on a 21 day cycle with Ixempra and Avastin on day one and Xeloda starting day 1 through day 14. After my infusion on Friday I was ok until Sunday when I went down for the count pretty much 21 hours a day for 5 days. This was way more difficult on my body than TAC. I stopped taking the Xeloda last Friday but my doctor wants me to start it up again this Friday. He said is it not the Xeloda it is the Ixempra that gave me the total exhaustion. He wants to give me the cocktail on a weekly basis next round with Ixempra weekly, Avastin day one and Xeloda on 7 and off 7. Anyone ever done this cocktail this way and how did you handle it. I was not prepared for the evilness of it all this first round. Thanks in advance!

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ive been on ixempra, avastin, herceptin for the past 5 cycles. onc raised the dose of ixempra to the max since a lower was not cutting it. its been 3 weeks, have never felt this depleted, totally exhausted. may be fighting an infection or prolonged imempra fatigue. saw her today, no chemo till things improve.
hope you feel better
nureet

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Thank you Nureet. I have heard this is an evil chemo and I can see that aleady. I pulled out of the 5 day sleepfest when my doc took me off the Xeloda but he said it had nothing to do with that. I still feel odd 12 days out but then again I felt odd up to 12 days every round on TAC last summer. I guess I got spoiled when I took nothing before and after surgery and then went on the BSI - 201 study for 2 rounds, gemz-carb, which was very mind but didn't work for me so I was kicked out. BTW, I am a triple negative. So I had 3 months on gentle stuff and no used to being 'out of it' again.

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Hi Disney: Got my first cocktail of just Ixempra on its own Thursday and it kicked my butt. Very fatigued. Last night I developed pain all over - every joint and muscle. Thank goodness for pain meds. I hope that I can get to work tomorrow. This drug reminds me of Adriamycin. I dont see me surviving 6 cycles of this lot. For me Navelbine was the best - I had no side effects at all, but it done nothing for my tumors.

I dont know how you can do the Ixempra/Xeloda/Avastin combo - that just sounds unbelievable and almost barbaric! I was on Xeloda itself last year and had nasty side effects from that tool.

I pray for the day chemo treatment is a thing of the past. I really do.

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I saw an expert at UCLA last week and he along with my oncologist are going to try weekly Ixempra on me at a dose of 12 mg instead of 40 mg every 3 weeks. He said it should allow me to function and hopefully keep working. Once I arose from my 12 days of a zombie fest I feel pretty good. The xeloda has been fine for me as I took that alone last week. The tumors in my neck area have already decreased alot after just one round and the UCLA specialist said I can do this off an on for a very long time and I should have a good quality of life. We shall see next week when the evil ixempra hits me. Doc said it is like a chainsaw and can cut through this cancer, so bring it on!

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Hi DisneyGirl. I have been on Ixempra/Xeloda since Dec. I felt the pain from my swollen lymph nodes go away after the first treatment. It is a tough treatment I agree. I LOVE your term 'zombiefest' that is perfect plus made me laugh. I get a PET scan next month and will know more then but I know it has done something positive because the pain in my back and abdomen is gone. Also vit. B-6 helps a lot with hand/ foot situation.
Kris

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StuartRose,

Glad to hear your swollen nodes feel smaller too. I had like what felt like a rock where my neck meets my shoulder and it is all squishy now. I hope my doctor has a smile on his face Friday when I go in for treatment. I hope that this new way of getting the chemo, in the low dose will not kock me for a loop like the first round did. Are you doing it once every 3 weeks or weekly? I will let you know how weekly goes.

Take Care,
Patty

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Hi - I was on Ixempra/Avastin/Zometa since November and my doc is changing my chemo to Gemzar & Taxotere next treatment. The Ixempra knocked the crap out of me for 6 days after the treatment. I literally spent 6 days on the couch with no energy, not wanting to eat and totally constipated!! This was the toughest drug so far and I have been doing chemo since 04/07. I also was on Xeloda and had no side effects whatsoever. It's the Ixempra!!! My oncologist told me that he is hearing alot of bad side effects with this drug. I'm changing chemo because my recent PET scan revealed progression in the bone mets. So, basically, it did not work. Good luck and I hope you feel better soon....Suzanne (triple negative too)

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I slept for a week the first round of Ixempra on a 40 mg dose but last week started on a dose of 12 mg and that seems to work much better. I was able to work while on it. I am finding that on this combo the cancer in my neck and chest is being zapped hard and I feel many different sensations, tingling, burning, numbing and shooting pains and the large lumps are now smaller ones that feel like small pearls or beads instead of huge masses. My doc says Ixempra is a beautiful drug for TN and he is not surprised it is already attacking the cancer. I was in a study BSI -201 with Gemz/Carb before this and that was very easy but I flunked out of the trial and was put on this. This one I can feel working and I am still able to function normaly...so far. I know I can't be on this super long as Ixempra is VERY toxic but for now it is working on me and whatever it takes and gives me quality of life and this seems to be working I will do. I do have Neuropathy and that is what my doc told me would get me to the point where I will say give, and then we will try a chemo vacation and do some radiation. If you asked me a year ago if I would have know all these hard words I would have said not in a million years, but I HAVE learned them and educated hundreds where I work about this ugly beast cancer.

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Disneygirl-
You say ixempra is very toxic. How many rounds of ixempra can you have before stopping?

Keeping my fingers crossed that it works well!

beachgirl

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The UCLA doc said I will know when enough of this is enough. He said the neuropathy would get so bad that I will tell him when enough is enough. I got the neuropathy after my last round of TAC last fall. Not bad but on this new cocktail I can feel it getting worse. I will go off the ixempra and hopefully do some radiation since I have not had that option yet. My nodes in the neck area have greatly reduced on just one round of the Ixempra so I have to believe it is working. My doc is very impressed when he sees the difference. Going for more chemo tomorrow and will ask the doc more questions.

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I did not have the cocktail, but I was on Ixempra last year (mets to spine, hip, supraclavical lymph node). My hair thinned but I really had no fatigue at all; however, after 8 rounds I was taken off treatment because I developed colitis and wound up in the hospital for 5 days. Apparently this is a very rare side effect. At any rate, my follow-up scans were clean and my cancer went into remission again for about a year.

I don't know if Ixempra is causing your exhaustion. Maybe it effects people differently, but from my experience it never slowed me down... at least until it became hard on my colon, lol.

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DisneyGirl,
I am on Ixempra every three weeks right now (Xeloda 1 week on and 1 week off) and I seem to be doing alright. I get my PET on the 8th of March and will see doc the next morning. Hope she has some promising news, will let you know.
Kris

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DisneyGirl,

I am curious about your lowered dose of Ixempra and your consult at UCLA. When my oncologist at MD Anderson wanted me to go on Ixempra next, I declined because I had heard of how tough it is. I am working with a local oncologist only now and we are trying Xeloda again which worked for me for a while before.

I live in Morro Bay and have thought that I might go back to a major cancer center at some time in the future. Who are you seeing at UCLA? I like the way they were willing to change the dosage of the Ixempra and how they said they could help you manage it for a long time.

Terry

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I saw Dr. John Glaspy and he is world renowned. My oncologist also recommended doing it weekly if the 40 mg dose once every 3 weeks was too much to bear. I was able to work all 5 days after chemo last week. I had just the Ixempra today. On my 3 week cycle I get Ixempra at 12 mg weekly, I do Xeloda every other week and Avastin weeks 1 and 3. So far the big lumps in my neck have shrunk and now I have what looks like small beads around the left side of my neck from the front to the back. I get weird pains that cause me to jump or scream or moan at times. My doc today was stumped but he said it could be an infection so gave me antibiotics or it could be some neuropathy so he told me to take an extra neuropathy pill at night and to take vicoden and 2 xanax to get a good nights rest. My neck upper chest area is swollen and red and I can feel and see the small beads all around. They used to be masses so I am going to believe it is the cancer breaking up. So weird though. All in all though, the weekly dose so far is doable and something I can live with and work on. NO down time at all! Good luck!

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Disneygirl,

Were the beads/beading up a good thing? Are you doing better Now?

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Hi all,

Seems to me that this cocktail I am on now is working. After two rounds I have measurable shrinkage of the nodes in my neck and chest. Doc thinks that I also have Cellulitis, which could be why I have all the beads all around my neck. I was put on pils about 12 days ago and it seems that finally that is getting a little better. Now my problem is nausea. I am now sicker than a dog throwing up a few hours after I eat. I also have twitches, have no idea where that came from. I will get some answers Friday and get back to you.

BTW my name is Patty

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Patty,

I hope your appointment went well today and that you are doing better. When I looked up "cellulitis", I saw that it could cause nausea. The drugs that supress your immune system can make you more suseptable to cellulitis. I think once your infection clears you will rapidly feel so much better!

I have what feels like a bunch of small beads in my breast. I think when the mass breaks up a little it gets more "beady", for lack of a better term. It feels so different than my primary breast cancer of 2001 felt (which was like one solid mass) my oncologist doesn't have an explanation for the beads, except he once called them "nodules in the skin".

Anyway... I'm glad to hear your treatment has been so successful and just hang in there, your side effects will lessen soon (if they haven't already).

Best,
~ Sandy

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I did Ixempra and Avastin and had the same issues with fatique and joint pain. The side effect that concerned me was the tremors that I developed in my hands. Ixempra is strong but after 4 months with no improvement I opted out.

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I'M ON IXEMPRA AND XELODA NOW. iT IS JUST AWFUL. HORRIBLE PAIN THROUGHOUT MY BODY AND NEUROPATHY. ENDLESS PAINFUL TORTURE. WORST CHEMO EVER. I JUST HOPE IT WORKS!

ANGELVOICE

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Patty

So good to hear from you....been worried since your PET scan in March and hadn't seen any posts. What a sigh of relief. Glad to hear all is working. What about emend for the nausea??? I had that for TAC and it worked wonders. Also aloxi? Another good one. I'm on navelbine/avastin now. No nausea but I'm getting kytril and reglan with it. No one told me of the constipation. Boy has that been bad.....been on poop patrol!!! Seems to be getting better but have to watch what I eat, etc.

So glad to see good news from you!!!!! I am so relieved.
beachgirl

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