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Is Ixempra more evil than TAC???

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DisneyGirl1956 View Drop Down
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    Posted: Jan 22 2010 at 9:45pm
I just started my third regime to try and tackle this ugly beast.  My first try was TAC and then I had a lumpectomy with 13 nodes removed, but that didn't kill the cancer cells so I went on the BSI-PARP Inhibitor trial for 2 rounds and that did not work, cancer progressed a bit so was kicked off that.  Now my doctor and the UCLA trial doc put me on Ixempra, Avastin and Xeloda.  I hear the side effects of the Ixempra are UG-LEEE.  Anyone taken this before and what is your take on it.
 
Any words of wisdom would be appreciated.  I have my Bag Balm to ward off the hand and foot disorder, that sounds so yucky and it's made for cows TEATS and my baking soda and salt mouthwash to ward off the mouth sores and of course a medicine cabinet full of designer drugs to keep me down when I do not feel like 'doing the day'!!!
 
Can already feel the Neuropathy in my feet getting worse and I take pills for that and I can feel the nodes in my neck where my cancer is enraged at this chemo so..........GO CHEMO and knock this s*@$ out of me!!!!!!!!!!!
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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cg--- View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cg--- Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2010 at 10:50pm

Dear Disneygirl,

 
I have not have the experience of those chemotherapy agents, but just from things I have gathered and stored away just in case I ever have to try another 'liquid gold' regimen (I imagined my chemo as liquid gold coursing through my veins) - I did the AC + T dose dense (every two weeks).
 
Vitamin B6 is your friend when it comes to neuropathy.
 
I read from others that after you take the Xeloda to put your feet up for at least 30 minutes (may help hand-foot syndrome).  Keep your hands out of water as much as possible.
 
If you have to have a Neulasta shot to keep your counts up....take Claritin (this lessens the side effects often associated with Neulasta).
 
We will be there for you every step of the way.....or side effect. 
 
Love,
 
Connie
 
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DisneyGirl1956 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 22 2010 at 11:01pm
Thanks Connie, I have taken the Neulasta shots on the TAC regime and found if I took Tylenol before and for a day or two after the pain from that was lessened.  I have learned alot in the last 7 months that is for sure.  Can't poop, pooping too much things like that.  Hope I don't get that hand foot thing syndrome, doesn't sound very delightful.  I want to keep working, just went back for 4 weeks after being off for nearly 7 months and it was great therapy for me but both my doc and nurse said this is tough stuff and will take me down like the TAC did.  Bummer, but I will do what my body tells me to do. 
 
Thanks for being here, it helps to know there are others in our shoes that care.
Patty
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 23 2010 at 1:47am
I can give some hints on the xeloda....definately have to have it with food and somehow it works with it.  B6 can also help with the hand and foot sydrome.  I also did long soaks in a tub as every bone in my body hurt the weeks I did xeloda. 
 
On the avastin....watch your blood pressure.  with the ixempra too it may not be a problem but avastin is known for increase to blood pressure and I had that for sure and also nose bleeds.  Buys some ice packs for the nose.
 
Not sure on the ixempra. 
 
I was so hoping all would be well for you.  Hoped the parp was the miracle.  I too am waiting for scans.  This week had a platelet transfusion that I so did not want.  I wait a few weeks with no chemo and then time for another PET.  WAs NED in Sept 09 so hoping that this *$%# is gone.  Best of luck on the new cocktail I'll be thinking good thoughts for you.
 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote adaniel Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2010 at 7:10pm
i have had 2 round of ixempra already and i have had no side affects! i have my chemos on thur, fri i will be fine and i get my neulasta shot and then sat and sun i will have a headache...not sure whether its bc of the chemo or the shot! but then mon i wake up and feel fine and i go about my every day life! the ac chemo kicked my butt for sure. i was on the couch for 5-8 days..it was rough! i know everyones treatment is different but just wanted to share my story!
dx TN 8/09 Age 22; St4, Gr3, 4/18 nodes, BRCA 1/2-; AC & Ixempra x4, finished 2/10; 3/11/10 mets to lung & nodes; G/C began 3/15/10; Iniparib began on 6/8/10
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2010 at 7:42pm
That's great to hear, Adaniel.  

Patty, how are you feeling?  It's a great sign, by the way, that your neck already feels better.  Sometimes when a drug works, it works right away.  All appendages are crossed for you!

love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote mainsailset Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2010 at 7:42pm
Only thing I can add is that bag balm is the greatest thing since Wheaties. I used it for after mast surgery, on hands during chemo and to this day I keep a box around, yes I know it's a petroleum jelly base but it has been a real help to me.
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2010 at 7:54pm
Wheaties, do people still eat those?   (we date ourselves so easily.  my kids would have no clue. :)  ) 
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DisneyGirl1956 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 24 2010 at 10:11pm
Thanks for the advise on this drug.  I went to work today and made it through the day but was very tired after and it's a good thing my car knows how to get home by itself.  Isn't it amazing that a car can do that!?!?
 
I rested when I got home listening to my Vikings attempt to win to move on to the Super Bowl, as we speak they are in overtime, so I think I am starting to hit the wall so to speak.  My nurse said this would hit me hard but not too hard yet just a bit tired and foggy.
 
Hands are tingling, mouth is tingling, and the cancer in my neck has been burning all day.  The feeling I have is different from any of the other chemos I have had before.  This is like a sting, stings off and on all day in the neck area.  Hope its zapping the cancer like a bug zapper.
 
I hope this makes sense, I think I really am hitting the wall.  Go Vikings!
Patty
(Both teams are playing to win though so the best team will!)
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Terje Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2010 at 12:01am
I've read before about sucking on ice cubes, popsicles, or frozen fruit during infusion to prevent mouth sores. I don't remember which chemo regime I was reading about at the time, so I did a quick search for, "mouth sores ice" in this forum but not very much came up.

I also remember someone mentioning an ice cap for scalp problems caused by chemo (again I don't recall which regime).

Would it be prudent to suggest placing one's feet and hands in ice water to prevent or reduce hand/foot syndrome? I'm not sure what the half life of Ixempra or Xeloda are, but if it's short, then reducing the blood flow to one's extremities by keeping them cold might work. If it's bad to get one's hands and feet cold maybe some thin socks and plastic bags over one's feet before placing them in cold water and then rubber gloves on the hand to keep them dry as well.

Has anyone tried this?

BTW, Patty, I'm sorry that BSI-201 didn't work for you, but I think you're right. It's best to find out earlier and to find something else that works as soon as possible, so I think it's good that you were in a study that provided increased monitoring so that you could find out sooner rather than later. Also given the phase 2 results, I believe it was a good bet that it might work. I just wish that my cousin had gotten the PARPi right away so that she could know already if it's going to work or not rather than having to wait an additional 2 months to find out.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 26 2010 at 12:09am
Terje, the icecap concept was presented at SABC in December.  Their results showed that for non anthracycline regimens, it actually works!  Total shocker.  So, if you aren't downing adria or doxil, the ice cap should keep those hairs where they belong.  But unfortunately at the cost of freezing one's poor head for hours every infusion, which sounds really uncomfortable.  Also, these caps are expensive, running in the 100s of dollars.    Given that it works for heads, I don't see why it wouldn't work for hands and feet.  Good point. 
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DisneyGirl1956 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 6:27pm

I have been pretty much down all week on this Ixempra/Xeloda/Avastin combo.  Which one is giving me the problem?  I am so tired I just take a vicoden and and Xanax and let that take effect on me and I go down for 4 hours.  I wonder if it's from the Xeloda I take twice a day for 14 days.  I am not liking my qualityof living so much right now. 

Any insight would be much appreciated!
Patty
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote beachgirl6 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 9:23pm
Frozen fruit works.  I had heard this tip from a friend who got treatment in NYC.  She highly recommended.  One NJ onc consult said yup it works.  My doc said it was bull.  Well I did it everytime I had TAC during the A and the C.  Went pretty much the whole time with no problems.  Only time I had a problem was after the #5 treatment when I fell asleep in the chair the whole time and didn't suck on the frozen fruit at all.  So I'm a big fan of give it a try.  Cold water and soaking the hands and feet might just work.
 
Good luck.
 
beachgirl
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Jan 28 2010 at 9:58pm
I don't know about Ixempra but have just completed 8 mo of Xeloda that seemed to contain bone mets until recently, so now am moving on to a new chemo.  For hand/foot, I found vitamin E oil (otc in cosmetic area of most pharmacies) helped some.  Definitely stay away from warm water as much as possible.  I've been off Xeloda for 2 wks and still have red palms with some peeling.  But it should go away eventually and at least I'll be able to walk more comfortably.  Placing extremities on sacks of frozen peas helps too!
Good luck with new regimen.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2010 at 12:34am
Patty, I'm sorry you are feeling so rotten (and sleepy!).    I've never heard anyone complain of sleepiness from Xeloda or Avastin, so my guess is that it must be the Ixempra.  Either that or you are just bone tired from being in treatment for so long, and from all the emotional ups and downs that have come with it.   But considering that you have done so well with all the other treatments, it must be the new drug (simplest explanation, right?)   Anyways, I hope you'll feel better soon as your body adjusts.  Why do the lymph tumors in your neck hurt?  Are they pressing on something?  Is there anything that can be done like taking them out surgically or irradiating them that would help?   It sounds really hard to have pain so close to your face and seat of consciousness.     I really wish I could stop by and bring you soup.

Love,
Denise

DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DisneyGirl1956 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 29 2010 at 3:34pm
Yum!  I love soup.  Any kind.  My neck hurts because that is where the cancer has spread, the supra-clavicle area and also under my chin and near my ear.  I feel the hard lumps so it makes my neck very stiff.  It seems to get real angry when and a few days after the chemo goes in.  I have actually been up and sitting here at the computer over an hour now.  Nurse recommended Ibuprofen since my counts are all up and it worked!
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Niselynne Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2010 at 5:27am
I've been off TNBC for a while, so just catching up now.  

I did 6 rounds of Ixempra+Avastin+Xeloda, last cycle was 6 weeks ago.  I had a PET/CT 3 weeks after my last round that showed a small amount of activity in my axilla, but the mets in my bone and liver didn't come up on the scan.  One or all of the three drugs did some good!

I've been doing radiation to my axilla while still doing Avastin every 3 weeks, plus 1000mg of Xeloda on radiation days.  I've been feeling great.  No bone pain for almost 2 months now.  I was taking viccodin regularly when I first started Ix+Av+Xe - I had bone pain all over and it seemed to be louder with the chemo.  I think it was the drugs munching on the cancer.  I didn't get neulasta, instead I'd get 3-4 shots of Neupogen.  Those also cramp your body up like a bit*#.  More viccodin.  But, at about round #5 I didn't need the pain pills anymore, and I've been pain pill free for 2 months.    

While on the Ix+Av+Xe my blood pressure was high, like 140/100, and I'm usually 120/70.  That has come back down since I stopped the Ixempra.  Energy-wise I was doing ok until cycle #4, then it took a dive, but it never got as bad as AC.  Hand/foot is no fun, but if you just sit down and put your feet up when they start to throb then you can stop it before it gets bad.  I found that if I just put my feet up for 10-15 min then I was good for another 45 min of standing.  My eyes get funky the first few days after treatment, I'm pretty sure it's the Avastin since I still get it.  Feels like you have sand in your eyes and you can't focus.  

The side effects went away pretty quick once I stopped Ixempra.  The low dose of Xeloda doesn't bring on the HFS.  My hair is growing back a little - I look like I cut my hair like this on purpose...love the funny looks from people.  

Hang in there.  Keep up staying ahead of those side-effects.  It's hard work, but it's worth it.  I was prepared to have them tell me my scans didn't show improvement, but to hear that there was no activity in the bones and liver just sent me smiling.  Since I've been off the Ix for 6 weeks I'm starting to think I feel a little bone mets again...but I'm hoping it's just my head messing with me.  Gotta wait another 2 months for my next scan.  Hopefully it is NED, but if I need to go back on the Ixempra at least I know it works...and I would try the ice skull thing!  It would be awesome to keep the hair!

love and aloha,
Denise L.


DX 9/08
ACx4+Tx12wkly
NED
3/09 Lumpectomy, 5/09 RADS
7/09 Mets Axilla, spine, pelvis, ribs, sternum, liver
7x Xeloda+Ixempra+Avastin
12/09 scans show disease only in axilla
1/10 RADS+Xeloda+Avastin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote DisneyGirl1956 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2010 at 11:20am
Well, I woke up this morning with a little More life to me.  I was told to stop the Xeloda yesterday by my doctor because I felt so toxic and could barely walk.  I am staying off of it for now and will see him Monday to reassess me.  I think that Ixempra Xeloda Avastin combo is way to much for me, more so than even the TAC.  At least with TAC I pulled out after 4 or 5 days and was semi normal the rest of the 21 days.  This combo seemed to keep me down 24/7 for a week.  I was so spoiled on the PARP Inhibito, I so wish it would have worked.
 
Oh well, Today again I rest and maybe I will be able to go back to work a few days next week.
Patty 
dx June 2009 Stage 3C
6 rounds of TAC
Lumpectomy 10/09 13 nodes removed, Chemo did not work tried BSI-PARP Trial 2 rounds, did not work, just started Ixempra/Avastin/ Xeloda
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Post Options Post Options   Thanks (0) Thanks(0)   Quote catmax1954 Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2010 at 2:28pm

Good Day but everyday day is "This is the Day".  Yes I did take Ixempra along with a trial drug, Soraftnib, for a second recurrence in my lymph nodes.  The first dose of Ixempra was OK but the second dose put me on a walker for two days.  Was given pain meds and Lyrica and that relieved the foot pain.  I had no mouth problems but I did have back pain and the neuropathy in my hands and feet.  By the third dose, I had a dose reduction and the trial drug was reduced also.  My onc had wanted 8 doses of Ixempra but could only tolerate 6. s ACT and I worked every day.  I retired in May 2009 and treatments started in July 2009.  I feel I could not have worked on the Ixempra treatment plan.  I had too much back , hands and feet. pain.   I was able to do around the house, keep my grandson once a week.   During my first treatment in 2007 (ACT) I worked everyday.  The Ct in Nov was clear so for 3 months I am enjoying every day.  Scan again in Feb.  I am still have neuropathy in the hands and feet but feel it is getting better.    I no longer take pain meds but still take Lyrica.  Good luck and I always pray for my Pink Sisters.  Any more questions reply back.  From Cathy on lazy snowy day in Tennessee!!!SmileSmile

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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Jan 30 2010 at 4:04pm
Hey, Patty.  I'm glad to hear you are coming back to life.  The drug combo must be brutal, because I know you are one tough cookie.   I'll be thinking of you, imagining you blooming again like a little flower back in the sun.

Good luck, Cathy!

Love,
Denise
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.
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