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New xeloda thread - really

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BrendaF View Drop Down
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    Posted: Aug 20 2009 at 8:35am
I had posted on the old Xeloda thread, and then I went back hoping to find where we were actually talking about Xeloda.  There was some pretty dark stuff on there back at the beginning, and then it pretty much switched to brain mets in general.
 
So, here it is.  On Tuesday I two angioplasties.  One was the superior vena cava, and the other was the clavicular something vein that the portacatheter goes into.  I had the port removed a full year ago, and yet the vein was blocked by scar tissue.
 
I got the go-ahead to start Xeloda, and I'm hoping that I will get some relief from these swollen mediastinal glands that are giving me such grief.  If anyone has had good luck, please chime in.
 
Brenda
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Wendy2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 21 2009 at 3:08am
Hey Brenda
 
Yea kind of got off track on the last Xeloda site.
I'm in my 3rd phase of Xeloda. Started with 3000mg p/day. Did that the first 2 wks. then week off, then first week of second phase then had it changed to 2000mg p wk. and week off and now jst started 2000mg for the entire 2 wks this week - make any sense?  Anyway, after having WBR started Xeloda right away. Had cyberknife on Monday - so with these two things going on I can't tell if it's the Xeloda or what - but I do NOT feel well. Feel like I have the flu constantly. No energy - prob. rads. But onc. wants me to try and gut it out for a while longer.
 
Good luck to you and keep me posted.
 
Wendy
dx 3/06 TN, taxotere/cytoxin x4; radiation x 40; mets. to lungs, lymph nodes 3/08 - to begin chemo 4/29/08 Abx/Avas., 9/08 Avastin maintenance, 1/09 - off meds to see if Avastin causing headaches
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Post Options Post Options   Thanks (0) Thanks(0)   Quote karih66 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 23 2009 at 6:39pm
My oncologist put me on 6 Xeloda pills a day (500 mg x 6) for 2 weeks, then off 1 week, along with a Navelbein infusion once every 3 weeks.

I could not continue the treatment because for each cycle, after the first week of xeloda my white blood cell count was dangerously low. I never made it to the second week. I only attempted it twice. Other than the white blood cell problem, I felt fine - no side effects. I was unable to get the nupogen shots to boost white blood cell production during xeloda because it is a constant treatment. So I'm still searching for a chemo that will work...tried TAC, xeloda, now on weekly navelbein.

Kari

Edited by karih66 - Aug 24 2009 at 6:51pm
diagnosed 12/08. Mastect. 1/09
reconstr w/ expander in limbo
Grade 3, 5cm tumor, node neg.
Stage IV, Liver mets
negative for BRAC1 & 2
TAC, xeloda & navelbein
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BrendaF View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 4:44am
I'm waiting for it to arrive via UPS.  I'm supposed to take four pills in the morning, and five in the evening.  I'm rather fat, so it's based on body weight, but still I worry about the s/e's from such a large dose.
 
Actually, I've been eating so little lately, I can't understand why I'm not losing weight, except that my activity has gone down a lot, too.  But, I just haven't had any appetite lately.  Scales don't care, though.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 6:19am
Hi, Brenda.  I miss you!
love,
d
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 BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 6:22am
OK, I've officially started.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 6:24am
Good luck!  I hope the side effects will be manageable and the treatment effective.   It must be scary to be back on the chemo-coaster after so long. 
love,
d
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 BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 7:42am
Yeah, Denise, it is, but the cancer symptoms are getting to a bad place.  I know it's just symptom management, not cure, but I have to say that if this can reduce the swollen lymph nodes that are pressing on my trachea and making me feel like I'm being strangled, I'll be ok with that.
 
How about you?  I sense a darkness in your mood coming from across the continent since you've been home from vacation.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Niselynne Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 7:56am
I'm on day 7 of 1500mg x2 for 14 days, then 1 week off of xeloda. I don't know if it's in my mind, but about 3 hrs after my dose I get achey where my mets are (spine, ribs, scapula...). I'm imagining the xeloda munching on the cancer cells. Doc said that it was common to have body aches. Other than than I'm doing a few things to try and stay ahead of the side effects:
keeping my hands/feet moisturized with Bag Balm
taking 10g of glutamine 3x daily to hopefully prevent neuropathy
baking soda/water mouth wash 3x daily
1 tbsp psyllium husk powder/water to prevent diarrhea
No excess movement or carrying heavy things
Removed spicy, greasy, acidic foods from diet

I haven't had true nausea, but just a general icky feeling so I take an Ativan a couple hours after my dose and just rest. I don't know if any of my efforts are helping, but so far the worst thing has been the body pains. They go away in-between doses.

I'll report back after my first 14 days.

I also ask my pills to take away the cancer before I eat them. May sound silly, but it can't hurt.

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 dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 11:38am
Yup, the clouds are closing in on my mood.  My mom was diagnosed with breast cancer today (don't know what kind yet - except that it's an interval cancer grade 2 to 3), and my PetCT is scheduled for Wed morning.  Cloudy skies, rain coming down, trying to keep on moving.  There's work to do, kids birthday parties to plan, my mother to guide through the process, and life to live in the midst of it all.

Thanks for noticing, Brenda.

Love,
d

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 BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 1:18pm
Oh, Denise.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Aug 24 2009 at 2:22pm
On the plus side, our abstract was accepted at SABC for presentation and I have a new collaboration starting with UCSF on the role of stem cells in TNBC.   So if I can manage to keep myself alive and working for long enough I might just be of use to our community.

love,
d

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 trip2 Quote  Post ReplyReply Direct Link To This Post Posted: Aug 25 2009 at 6:07am
To all of you, you have my prayers you see improvement and hope the meds work well for you.  Denise let us know about your mom.
Hope the sun has come out.Smile
Stage 2 2003
Stage 1 2007
BRCA 1+
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Post Options Post Options   Thanks (0) Thanks(0)   Quote suec Quote  Post ReplyReply Direct Link To This Post Posted: Sep 03 2009 at 5:15pm
I'm starting fourth cycle of xeloda on sat...started with 3500 m per day; reduced by 500 m twice during last 3 cycles.  Redhand/foot syndrome my only side effect--using lots of creams, vitamin e skin oil and vaseline every night on feet particularly.  Also went from 2 wks on and one off but now have every other week.  Onc says aim is to find a dosage that will work and make tolerable side effects if any. Maybe my imagination but pain in bone seems almost nil when taking xeloda but some pain when off. 
Also on zometa and avestin
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 7:08am
I will finish the first cycle this weekend.  I really haven't had any side effects to seak of, though I'm tired a lot.  but then, I had three surgeries in the ast thirty days, so it could be that.  New bone mets in legs were giving me lots of pain during the night last night.  Does this mean Xeloda is not working?   I so want this to work.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote dmwolf Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 7:20am
Hi Brenda,
I heard somewhere that bone mets initially hurt more when a drug is working, as the cells die, and then hurt less.  Of course you're tired after all those surgeries!  Your body has been through so much, as of course has your heart and spirit.  It is amazing you are not completely flat on your back. 
Much love,
Denise (feeling a little weepy this morning, about to go to yoga for some teary downward dog).
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 BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 10:03am
Thanks, Denise, I thought I had heard that, too, but was afraid I was making it up.
 
Been feeling teary myself, lately, but I'd give a lot to downward dog.  Lungs don't agree to being suspended upside-down.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Niselynne Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 12:47pm
Brenda, I just finished my 1st cycle. They said I didn't have any bone mets in my legs (they only scanned down to my knees), but I've been especially achey behind my knees and around my ankles. Kind of hard to stand for more than 5 min at a time. I'm 14 days on, 7 days off. During the 14 days I get achey were my mets in my spine and pelvis are. I really to think it's the Xeloda killing off the cancer cells. I take a viccodin to be able to sleep. Feel a little guilty taking pain pills, but sleeping for 4-6 hours is nice. I feel like it's working - my axillary nodes were swollen to almost baseball size. It's gone down 75% since the start of 1st cycle.

love,
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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BrendaF View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Sep 04 2009 at 1:17pm
Denise, you must be just a few days ahead of me.  Good luck to us both!
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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BrendaF View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote BrendaF Quote  Post ReplyReply Direct Link To This Post Posted: Sep 07 2009 at 4:12am
Well, I finished the first cycle two weeks on last evening.  Now I've got one week off and start again on Monday a week from today.
 
We have decided to do some traveling, and we're just going to travel while i'm on Xeloda, rathar than trying to juggle appointments and blood tests.  So, we'll see.  I did not have any side effects except tiredness this first round.  I expect to see some hand-food syndrome next time.
Dx 2005 2 cm, 5/12 nodes, A/C + T, 28 rads.
Dx mets 12/07 mediastinal and supraclavicular nodes, carbo + taxotere X 6.
brain, lymph, pleura, bone mets. Started Xeloda 8/24/09
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