Round 2 - Different Chemo Xeloda

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mossybaby
mossybaby Member Posts: 49
edited June 2014 in Triple-Negative Breast Cancer
Round 2 - Different Chemo Xeloda
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  • mossybaby
    mossybaby Member Posts: 49
    edited October 2009

    Or maybe I should say round 3...

    First, I had 6X TAC chemo April-August.

    Next, I had a double Mast in Sept. Path report said minimal response to chemo since tumor was still 5cm and 11 positive lymp nodes.

    Now, after a trip to Philly for a second opinion at the Univ of PA, the Dr's recommend another round of chemo including Ixempra & Xeloda. (spelling??)

    Have any other women had this treatment?  Has it worked out well?  What can I expect? 

    I start this Monday Oct. 18th.  Any info you have would be greatly appreciated!!

    Thank you - Love Peace Heatlh & Happiness

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    Hello Yvonne -

    I have just signed up to the forum to be able to answer your question although I have been reading for over a year now.  I also was IIIb as you can see and my oncologist was not satisfied with my response to chemo (I had the same TAC as you although I can't remember how many now)  Then I had surgery (left mastectomy with recon (expander ugh!) and the path report came back with about a 50% response - I think I originally was positive in 3 or 4 nodes and after chemo was still positive in one.  After that I had Radiation treatments.  After radiation treatments my oncologist offered me the option of follow up treatments with Gemzar and Xeloda which I took.  I just finished the Xeloda this Monday.  I originally started out with 2 weeks on and 2 weeks off but the neuropathy was pretty bad and so was switched to 1 week on and 1 week off.  I don't know if this will affect you the same way but after about 4 days on the Xeloda each time I had pretty uncomfortable neuropathy in my feet and a small amount in my hands.  Each time it got better even before I stopped taking the Xeloda and is now not bad at all - just a little numbness and skin thickening (like calluses on the bottom of my feet and it gets better each day.  I did have some constipation but do not know if this was caused by the Xeloda or the Gemzar.  I was also told that I would probably lose my hair again but did not.  I hope this is of some help to you :)   Hang in there

    Linda

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  • mossybaby
    mossybaby Member Posts: 49
    edited October 2009

    Thank you Linda.  I have been searching for someone who is in my shoes to compare treatments and results with.  We are very similar in diagnosis with the stage and triple negtive factor.  You have IDC and the Drs haven't agreed yet whether i have IDC or IBC but I guess it really doesn't matter a whole heck of alot though. 

    It seems that alot of women on here are very lucky to have the TAC or some similar combo work very well on them.  I was dealing quite well with this whole situation until the path report came back that the TAC didn't really work.  Kind of blew the whole mind over matter/postive thinking that I was so sure of.   

    Do they plan to give you scans or anything now that you are done?  I'm schocked they don't do these more often but the drs keep saying.. we probably won't see anything but it doesn't mean its not there.  Also, have you talked to them about your ovaries?  Drs seem pretty insistent they come out soon.  I'm 32 so that will put me in very early menopause with no hormones to help.  YIKES!!  (people think I'm b*tchy now look out world!!)

    I hope to talk to you more as well as other who are with us on this journey.

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    Hi Yvonne -

    I had a pt/ct scan in late march ( this was apx 1 month after the mastectomy) and it came back clean.  I have another scheduled for Oct. 22 and am a bit freaked now that most all of my treatment is over.  I am going to be starting on Celebrex on the 1st of November because I have read that this may be a preventative treatment - my oncologist was willing so I will do whatever I can at this point to try to prevent a recurrence.  As far as the Xeloda and Gemzar - whether they work or not- I will only know if and when they DON'T work.

    I am just a tad older than you (66) and had a complete hysterectomy (sp?) in 1992 for fibroids.

    I had about a 50-60 percent volume decrease in my tumor size and lymph involvment - my surgeon thought that was GREAT - my oncologist didn't - he said it should have all been GONE (his words) with the treatment I had as neo-adjuvant (tac).

    By the way I remembered the main reason I was taken off the 2 week on 2 week off with the Xeloda and Gemzar and it was also because my white blood cell count plummeted the first 2 week period - had to take neopogen shots.  Also another of the side effects I think was from the Xeloda was very dry skin with red (rash/raw) spots on the backs of my hands and arms - it wasn't as bad as it sounds and I used Aloe lotion which seemed to help quite a bit.  I also had aches and pains in my back - again nothing horrible - Tylenol helped both the neuropathy and the back pain.

    I haven't talked to anyone much about all this treatment/cancer business - my husband is not well and will have to have surgery in November for an abdominal aortic aneurism so I try not to bother him too much with it.   Also I get really sick of thinking of it myself.

    Hope you have a good day and let me know if I can answer anything else (for what it's worth anyway Smile

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited October 2009

    Mossybaby--I too was offered xeloda but opted for more IV chemo.  I had ACT starting in Feb then bilateral mastectomy in June  then started more IV chemo (carboplat + taxol) along WITH radiation.  At the time of surgery my primary tumor was gone but it was in the lymph channels and eventhough I had a clear PET scan pre surgery there were 2 lymph nodes they didn't know about (remember, the PEt CT only sees to 1cm).  Because I am 39 I felt like I needed to do something more and since I handled the first round of chemo well I opted for more. Studies say that nothing should be done if the tumor isn't gone at the time of surgery but my doctors (and yours) DO NOT agree with that! Thank heavens!  So let them throw the kitchen sink at you....we want to be rid of this forever!

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    Hi to both of you -

    I just wanted to clear up;the fact that while I was on Xelolda I was also on Gemzar which is an IV chemo.

    Good luck to you Smile

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  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    I was diagnosed with IBC in June 2009 after a previous diagnosis of IDC in April 2008.  I had already had 4 rounds of AC and 12 weekly infusions of Taxol and 30 radiation treatments.  I also started on Herceptin at the same time as the Taxol and it was to continue for a full year.  But, when I was dx with IBC this summer, they stopped the Herceptin and started me on Tykerb and Xeloda.  I had a really nasty IBC rash.  Honestly, after one day of the two new drugs, I could see improvement.  After 3 weeks, it was totally gone.  I have now been on Tykerb and Xeloda for 3 full months with 2 more months to go.  I take Tykerb daily.  I take Xeloda twice a day for 14 days, and then off for 7.  No hair loss.  No nausea.  Lots of diarrhea and LOTS of hand and foot syndrome.  My hands are quite painful, but if these drugs are working as well as they appear to be, I will put up with most any side effect!  I had another PET/CT after being on them for 6 weeks and it showed absolutely no mets.  My mammogram and ultrasound showed much improvement as well.  I have another PET/CT and mammo and ultrasound scheduled for Nov. 2.  I expect them to still be clear. 

    My oncologist told me I would know quickly if the drugs were working by seeing improvement in the rash and he was right.  I will be having mastectomy sometime in Dec. or Jan.  At that time, I think the plan is to stop the Xeloda, but continue the Tykerb for a year.

    I hope you also have good results with your chemo.

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  • cheryl144
    cheryl144 Member Posts: 6
    edited October 2009

    i was dx 8/07 bilateral mast in oct triple neg stage 3 grade 3 11/12 nodes positive then i did chemo AC then abraxiane and zeloda it went okay i had some problems w my hand all red and sore.  had to quit taking it for a while until my hands healed.30 rads i go for checkups every 4 months my onc just does blood tests. so far so good but i wish i could do more things to help prevent a recurrence. good luck ill be watching for updates

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  • mossybaby
    mossybaby Member Posts: 49
    edited October 2009

    Hello ladies.  My friends kidnapped me for the weekend to make sure I had some fun before I got back on the meds again.  I went to a breast cancer benefit dinner on Sun. and guess what... I won the 50/50 drawing!!  It was just enough to cover my copayment on the Xeloda for the 4 treatments!!  Imagine that?!  The little girl pulling the tickets must have been an angel in disguise.

    I went today for the IV med- they are calling it Ixabepilone, not sure where I got Ixempra from unless that is shortened name?  That one med took 3 hours plus an hour of other things anti nausea, bendryl and something else.  Got the xeloda pills as well.  Will have to take 4 in the morning and 3 at night YIKES!!  Good thing I don't have a problem taking pills!!

    Cherokee - I'm the same way as you.  I don't want to burden others who have their own cross to bear with my struggle.  I also hate thinking about it all the time but right now it seems to control me.  That's why this site has become a favorite of mine already.  All of us, regardless of stage or treatment type can talk openly here.  Sometimes just getting the worries out of our heads eases things a bit.  Best of luck with your husband as well you will get through everything together. 

    I will likely get in touch with all of you again when the aches & pains set in to make sure they are normal and I don't need any adjustments with these meds.  Thank you ladies for being here!!

    PS: as for the kitchen sink - bring it on!!

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    Hi Yvonne and all Cool

    Just checking in.  Yvonne I had to take 3 large(500mg) and 5 small (140mg) twice a day.  That totals 2200 mg twice a day - had to eat with both which got to be quite a chore, as my stomach was in rebellion with the pills, etc.

    I also got some help from Roche on the co-pay for the Xeloda.

     As for side effects, I started a small notebook at the beginning of my chemo and wrote down any side effect or complaint I had at the time I had it so I would remember to tell the Oncologist when I went.  I'm sure he got tired of me complaining but I wanted to make sure that if I had any serious side effect that it wouldn't be missed..

    Good for you Yvonne for getting out and having some fun!  Great that you won the drawing Laughing

    Talk to you all later

    Love you all Linda 

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  • bourscheid
    bourscheid Member Posts: 718
    edited October 2009

    HI ladies...may I chime in?  I have been on Xeloda with Avastin since January 09 and have had fantastic response.  You can read my dx to see my stats.  I have oficially been in complete remission since June.  I remain on a lower dose of Xeloda and Avastin for maintenance.   Side effects were minimal when I was on the full dosage (some hand/foot issues only - at 2000 mg. daily one week on one off).  Now that dose is reduced (1500mg) no effects at all except a little dryness of hands/feet.  Use bag balm on the hands and feet (I used Udderly Smooth during the day) and wear socks.  It helps tremendously.  Also, drink drink drink the water!

    Good luck!

    Hugs and blessings,

    Lori

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  • EllenWeav
    EllenWeav Member Posts: 12
    edited October 2009

    I am so glad I found this forum....DX in Jan 08.....Triple Negative, no nodes, very high Ki-67 (98%)...for this reason my oncologist wants to do "preventive, maintenance" chemo every 2 yrs...I did TAC origianlly with rads,,,now this upcoming Jan he wants to do a light dose of Taxol, Taxotere and Xeloda......was a little hestitant but the more I thought about it, knowing how well triple negative responds to chemo...I feel playing offense will really help any lingering ugly cells....sounds like its a good plan and something to do for Triple Negative....

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited October 2009

    EllenWeav---I'm very surprised to hear about "preventative maintenance" chemo.  I know that with me we are in unchartered territory with doing more IV chemo after already having neoadjuvant chemo/surgery.  The journal articles really say to just wait and see....thankfully my Dr didn't agree with that and I'm almost done with the second set of IV chemo.  So is your Dr just flying by the seat of his pants?  There are no journal articles that I know of that support this although I'm so glad he is doing something!!  Very interesting.....let me know.  If you had no nodes then you weren't stage 4 and xeloda is for stage 4....did you have a hard time getting insurance approval?  I'm very interested to hear.....

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  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    Xeloda is not only for stage IV.  I was originally dx with IDC (stage 2B) in April 2008 and now have IBC dx in June 2009 but am only stage 3.

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  • EllenWeav
    EllenWeav Member Posts: 12
    edited October 2009

    I have much respect for this particular oncologist and his collegues. I feel confident he is doing the best to be proactive for the triple negative and very high Ki-67 (98%)...i am 45 and did very well with the first chemo.....I was also concerned about the insurance and he told me that he would fight with them to get them to pay...rather than "preventative" this is how he is treating this type of cancer. I also know several on xeloda that were stage 2 and 3....will keep all posted...hope to begin this in January

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  • bourscheid
    bourscheid Member Posts: 718
    edited October 2009

    Absolutely no problem getting insurance approval...it's a lot cheaper than the abraxane/avastin combo I was originally on (which got rid of everything but one stubborn liver lesion - the one xeloda took care of).  Laughing  I think they were happy to have me switch.  Don't care for the $100 copay which I don't have with IV chemo...but it could be worse!  I wonder why IV chemo is 100% covered but oral chemo isn't?  It's still chemo after all.  Go figure.

    Yes, Xeloda is definitely NOT just for stage IV. I think they put stage IV on it alot because it is usually kinder to the system and therefore better for longer term use. 

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  • cwrightrn
    cwrightrn Member Posts: 242
    edited October 2009

    Thanks ladies for your responses.  The great thing about these forums is that we can share info and treatment plans....I appreciate it!

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    HHi Guys!

    Just wanted to check in and let you know I got the results back from my pet/ct scan today - this is the first one I have had since March...................WELL............

    YIPEE!  HURRAY  WHEW!!!! HANDSTAND AND CARTWHEEL!  PRAISE THE LORD AND PASS THE AMUNITION !    

    IT WAS CLEAN!!!!!!

    LOVE TO YOU ALLKiss

    LINDA

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  • Faith316
    Faith316 Member Posts: 2,431
    edited October 2009

    Wonderful!!!!  I hope I have the same good news as you when I have my next PET/CT on Nov. 2.  I wanna do cartwheels, too!!  Congrats!

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  • Cherokee
    Cherokee Member Posts: 10
    edited October 2009

    Faith316 -

    I will keep all my fingers/toes crossed for you - let us know how it goes.  I sincerely hope for the best for you.

    Linda

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  • mossybaby
    mossybaby Member Posts: 49
    edited November 2009

    Hello all...

     Linda - Congradulations on the clear scan!!  Faith - any word yet? 

    Currently, I'm on my week off of the Xeloda and I'm very thankful for it.  I was expecting the side effects everyone has mentioned but not to the degree I have them I guess.  I have been in extreme, uncomfortable pain in my bones, muscles, nerves and everything in between.  The pain killers all seem to knock me for a loop so I can only take them at bed time for relief. 

    Has anyone fell subject to extreme mood swings?  I have been extremely irritable and very nasty to most everyone to say the least.  I guess pain can put anyone on edge but I'm also on Elivil which is an antidepressant used for the nerve pain.  I should think that that pill would stablize any extremes in my mood but I have seriously become very short tempered and mean. Not sure what to do about this just yet.

    However, I look forward to hearing more good news from everyone here in hopes that it will bring my spirits back up. 

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  • vbabey
    vbabey Member Posts: 48
    edited November 2009

    Mossybaby, Like you, am TN, stage llla or b now I dont know, I am getting ready for my 4th AC, did a breast MRI after # 2 which the onco went over  a few days ago, seems like the big 2.9 axilla node shrunk by half, but the tumor is actually bigger, from 4 to 5cm....they have said its possible that it was growing so agressively that by the time I started chemo, it may have been larger, no way to know, they seem concerned, but after #4 AC on the 11th, they are starting me on Taxor and Gemzar. They also said they will reevaluate tumor size after starting T and G and go from there. In your experience, did anyone mention that iv chemo drug? She did try to get me into  a clinical trial but it was full. Hope you are feeling OK. 

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  • mossybaby
    mossybaby Member Posts: 49
    edited November 2009

    Hello vbabey,

    I am very happy to hear that your doctors are monitoring your tumor along the way.  I really do feel like if they had done this with me they would have seen that my tumor was not responding to the TAC treatments and could have adjusted it. 

    The very knowledgable doctors who recommended my new treatment actually gave me 2 options.  They recommended either the Xeloda combo that I am on or a Gemzar combo.  With all their knowledge, I was pretty much told that it was still a crap shoot since everyone's body responds differently to medicines.  Since my tumor was removed and we are treating a "possible" spread to else where that may be microscopic, I will have no way of knowing if the choice was right or if I'm ok unless things don't go well. 

    That being said, I believe you are in good hands!!  Your doctors are watching the progress and will be able to adjust your medicines until they find the one that works for you.  Maybe if they find the right combo upfront, you will see it shrink totally like some of the lucky ladies on this site!!

    As for now, I have to go..my girls think my time limit on the computer has expired and are demanding a turn!!  Lots of Love Luck  Health & Happiness!!

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  • Faith316
    Faith316 Member Posts: 2,431
    edited November 2009

    Mossybaby --- doing cartwheels here, too!!  My mammogram, ultrasound and PET/CT done at MD Anderson this week were all clear and still show no mets anywhere!!!  Current plan is to continue my Xeloda for at least 2 more rounds (which will be 8 rounds in total) and then stop a few weeks before my mastectomy.  I will stay on the Tykerb indefinitely according to my oncologist at MDA although after I stop the Xeloda, he wants me to increase it to 6 pills per day instead of 5 (1500mg instead of 1250mg.)  Thanks for asking!

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  • Cherokee
    Cherokee Member Posts: 10
    edited November 2009

    Hi All!

    Faith - congratulations on your good scan Smile - I know what a relief it is!

    Yvonne - now that you mention it yes I was very irritable (read real bitch) while on Xeloda.  Also the steroids they gave my during my first round of chemo made me a basket case.  All of that has cleared up now that I am not on all of that .  Hope for improvement in your side effects soon - sorry to hear you are going thru this.   Hang in there!

    Good Wishes to all

    Linda

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  • g94u67
    g94u67 Member Posts: 436
    edited November 2009

    Hello fellow TN & IBC galz,

    Faith & Yvonne:  So happy to hear the good news on your PETS. I just had mine last Thursday so let's pray it'll be 3 outta 3 clear scans!  Just praying it's still localized.

    Here's my story:  DX last year IDC TN. Went 8 rounds of ACT. Had lumpectomy 11/08 but 5 days later rec'd BRAC1+ results ugh..was set to have prophylactic Dbl Msx but IBC beat me to it. Now I've just finished 4 rounds of Ixempra and currently on 4th round of Xeloda 1000 mg. Ixempra SE's were similar to Taxotere (flu). I also get sore achy arms and feet but not severe hand & foot syndrome. I am bitchy too! I notice breast dries up very quick when on Xeloda. I'm set to have Dbl MSX 12/8 and then 6 or 7 rounds of RADS...

    Amen for chemo huh?

    Prayers & Hugs,

    Jeannine

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  • ladylake88
    ladylake88 Member Posts: 12
    edited November 2009

    Hi Cherokee, I am new here and was wondering if the ACT that you got was Adriamycin or Avastin. They gave me C & T but not A, as she didn't want to make my disability worse. When they did the double mast. I was filled with cancer. My original lumectomy was 1.5 cm. After chemo I had 4 cm of cancer tissue in the breast. Now have skin mets around the surgical scar and they have spread. Just finished 35 rds. of rad. and had one of the bumps biopsied. Path report not back yet but the PET they did the next day was clean. Now onc. #1 wants to put me on Adriamycin (I am allergic to anything that ends in mycin) and I got a 2nd opinion and onc. #2 wants to use Avastin and Zeloda. I don't know what to do and they want me to make a decision by Wed. morning. My port goes in tomorrow. Thanks for any help you can give me.

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  • mossybaby
    mossybaby Member Posts: 49
    edited November 2009

    Hey ladylake - I don't have an answer for your question except to say there are alot of different chemo combos that can work. Any kind of spread definately warrents more chemo whether we like it or not though BLAH!! They gave me a choice too and I hope I made the right one. 

     Right now I'm seriously doubting it though and I need to ask you about your skin mets please.  I just got out of the shower to realize the right breast around the incision site is red.  Both sides looked the same until now.  is this how yours looked when they found it on the skin?

    Thanks for your help as well.

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  • ladylake88
    ladylake88 Member Posts: 12
    edited December 2009

    Hi,

    Mine were white bumps above the surgical scar line. I called them my chain of pearls. When I went on line a lot of poeple said theirs were red and they had a rash, so I am assumming everyone's is different. I don't know, only that mine were white bumps. I wish there were more out there that were responding about skin mets. Sure would like more info.

    Lynn 

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  • Cherokee
    Cherokee Member Posts: 10
    edited December 2009

    Hi all -

    Lynn - sorry it has been so long since I have posted.  Husband underwent surgery on 11/23 for an aneurism (sp?) so I have been very very busy.......just a quick note to tell you my chemo was Adriamycin.

    Again - so sorry for the delay.

    Love and good health to all of you,

    Linda

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