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Old 10-05-2007, 09:23 AM   #1
Denise La.
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Join Date: Oct 2007
Location: Louisiana
Posts: 12
Hi Everyone Im a newbie Tykerb & Xeloda

Hi Everyone,
Im a newbie to posting I start tykerb & xeloda on Mon. any info or advice would be greatly appreciated. I look forward to chatting with all of you. Thanks Denise
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Old 10-05-2007, 11:00 AM   #2
hutchibk
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Posts: 3,519
Hi Denise - from the experiences of some of us who have been on T/X for a few months now:

1. eat as fresh and clean and healthy as possible. Drink lots of water and healthy tea and juice. Steer clear of milk if you are experiencing diarrhea. Exclude sodas, fast food and boxed/bagged junk food and snacks from your diet. It can make the difference between unmanageable diarrhea and preferred "normalcy and regularity". Also, many have experienced great help from yogurt/acidophilous products which help keep the stomach and intestines bacterially balanced. Bentonite clay once a day can also help absorb excess water that is held by the bowel...
2. the first few cycles, keep the kitchen stocked with BRAT diet items as back-up while your body gets used to the T/X combo (Bananas, Rice, Applesauce, Toast). Revert to these items in tandem with immodium as necessary to keep any severe diarrhea under control.
3. Watch for rash. Some people get it worse than others. Mine only lasted about 2 weeks and was limited to dry patches on my cheeks. If you do get a bad rash, there are several options your doctor can use to mitigate it. (Let me know here by posting and I will re-post the info from an informative brochure that Joe shared with us...)
4. It is a good idea to start lotioning your feet and hands often, now, if you don't already. (I have found one called Brave Soldier Friction Zone for my feet that is amazing. I use it about 3 nights a week and wear socks over it. Some have found Ahava to be wonderful for them) Some here have experienced severe hand/foot syndrome. I have only had a couple of sore toenails. Lotion will keep especially your feet from drying and cracking, which is hard to correct after it has started. Hand/foot syndrome is a result of the chemo leaking out of the tiny capillaries in our feet and hands and irritating the surrounding skin.
5. Don't drink or eat any grapefruit products.
6. Don't take any supplements or vits with folic acid in them, most noteably multivitamins and B complex. (folic acid can worsen side effects).
7. Take B6 supplements (100-150 mg a day - I take 50 mg with each meal) to help contain and mitigate the hand/foot syndrome. This is really important.

That is all I can think of for now. Hope this helps.

Don't be afraid of starting it like I was... I sat on the couch for a week when I started taking it, just waiting to get really sick (nauseous, which I haven't at all) or for my body to explode. I have to say, this is the easiest regimine that I have had so far, but everyone is different. I feel pretty darned normal, just a tiny bit of fatigue from time to time. It is just a matter of seeing how your body reacts to it and taking measures to mitigate the side effects.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-05-2007, 11:26 AM   #3
Denise La.
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Join Date: Oct 2007
Location: Louisiana
Posts: 12
Thanks Brenda

Hi Brenda ,
Thanks for the info . I will let you know how it goes this next week Im anxious to get started so I can kick this cancers butt again. Im going out now to find the foot cream you suggested, my feet stay dry anyway (I hate wearing shoes I live on the lake so i like the sand) . Thanks again $ the 411. Denise
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Old 10-05-2007, 11:38 AM   #4
hutchibk
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Posts: 3,519
You can find Brave Soldier online, but I think it is fairly pricey. It is a line of men's skin care products... Friction Zone seems like it will last a long time since it takes very little to cover my feet. There is one salon here that I know of that sells it. It was given to me by a friend who is a skin lotion freak and a life long jogger, with dry feet issues. It is pretty amazing.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 10-05-2007, 12:21 PM   #5
Carolyns
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Join Date: Jun 2006
Location: South Florida
Posts: 477
Hi Denise,

I just wanted to say welcome and wish you well on your treatment. Please keep us posted.

Love, Hope, and Peace,
Carolyn
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Old 10-06-2007, 02:29 AM   #6
dhealey
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Join Date: Jun 2007
Location: moved to Lancaster, Pa in June, 2010
Posts: 576
Denise, welcome and here's to kicking cancer in the butt! Keep us posted on your progress. Best of luck!
__________________
Debbie in North Carolina
Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 10-09-2007, 08:29 AM   #7
Denise La.
Member
 
Join Date: Oct 2007
Location: Louisiana
Posts: 12
Thanks for the support . Started meds on Mon. feeling fine just a bit queasy from taking so many pills (ugh) how do some of you take yours ? I took Tykerb 5 pills
and Xeloda 4 pills in am then xeloda 4 pills pm can I take Xeloda am then Tykerb lunch time then Xeloda pm ? I also started the lotion regime thanks again Brenda for the advice . I wasnt able to find BSFZ but got something from Bath & Body called Lay it on Thick a bit greasy but ok. Live & Love Strong
__________________
Dx Feb o6 idc
2+ nodes er-/pr- her2++
8 rounds a/c w 4 rounds of taxotere every other week
lumpectomy w node disection
rads 32 days
Aug 06 clean pet
Herceptin every 3 wks
Feb 07 clean pet
Aug 07 pet shows micro in lung and 1 pos node
Oct 07 Tykerb & Xeloda
Dec. 07 Pet scan node was 1.8 now .08 and no change in lung. after 3 cycles
Feb. 08 Pet Shows no change in lung nodule lymph node grew 1.8 and second node pos.
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Old 10-09-2007, 09:18 AM   #8
doh2pa
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Join Date: Oct 2005
Location: Chadds Ford, Pa
Posts: 206
Hi Denise,

Yes, it is a lot of pills to get down at once. But it's a small price to pay cause this regimen has been working wonders for many of us on this site.

I take the xeloda right after breakfast and dinner. I have a second cup of coffee at work and try to finish it by 9:30 a.m. so that I take my Tykerb at around 11:30 (2 hours after last meal) and have to wait and hour to eat so lunch is about 12:30 or 1. Find a schedule that works for you and try to stick with it, so you can remember.

Good luck
__________________
Donna
Diagnosed 2/04 - Invasive ductal - no clean margins
node negative - er+pr+, her2++
Mastectomy 4/04 - 4 rounds AC
9/05 - mets to liver treated with carbo/ixabipelone/herceptin
3/06 - complete remission
9/06 - new liver mets, starting Taxotere/Herceptin
1/07 -Liver mets stable, staying on Herceptin
5/07 - Liver, lung progression - starting T/X
12/07 - Liver, lung progression - starting weekly Navilbene/Herceptin
4/08 - Liver progression - started Abraxane, Carbo, Tykerb and Herceptin
7/08 - Liver Progression - started Gemzar, Avastin and Tykerb
10/08 - Liver progression - starting Doxil
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Old 10-09-2007, 11:27 AM   #9
hutchibk
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Join Date: Oct 2005
Posts: 3,519
Hi Denise, be sure and take your Xeloda either with a meal or within 30 min of eating, I take mine with my breakfast and dinner. Then, I take my Tykerb at night a few hours after dinner and an hour or so before bedtime. Take Tykerb at least one hour before or after eating (but probably two hours is better as Donna said), but NOT with a meal. Keep us posted.
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
hutchibk is offline   Reply With Quote
Old 10-09-2007, 01:36 PM   #10
Denise La.
Member
 
Join Date: Oct 2007
Location: Louisiana
Posts: 12
Thanks for the info its very helpful as the directions I got from onc. were not quite as specific.
Thanks
__________________
Dx Feb o6 idc
2+ nodes er-/pr- her2++
8 rounds a/c w 4 rounds of taxotere every other week
lumpectomy w node disection
rads 32 days
Aug 06 clean pet
Herceptin every 3 wks
Feb 07 clean pet
Aug 07 pet shows micro in lung and 1 pos node
Oct 07 Tykerb & Xeloda
Dec. 07 Pet scan node was 1.8 now .08 and no change in lung. after 3 cycles
Feb. 08 Pet Shows no change in lung nodule lymph node grew 1.8 and second node pos.
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Old 10-09-2007, 08:46 PM   #11
hutchibk
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Join Date: Oct 2005
Posts: 3,519
It is very new for most oncs... I was my onc's first patient on T/X. He is learning alot from me!
__________________
Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
hutchibk is offline   Reply With Quote
Old 10-10-2007, 03:27 PM   #12
Becca
Senior Member
 
Join Date: Sep 2006
Location: East Central Illinois
Posts: 89
Brenda, I also was my onc's first patient on T/X, and like you he often asks me questions about it. Recently he was surprised with how dark my freckles are--I told him it is from the Tykerb (info I picked up on this sight). Thanks for all the hints you have posted to deal with side effects of T/X. I was taking 100mg B-6, but am increasing it to help with the inflamed nails. Becca
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Old 10-16-2007, 10:36 AM   #13
Denise La.
Member
 
Join Date: Oct 2007
Location: Louisiana
Posts: 12
Hi Ladies,
Well its been a week and I feel great all blood work looks good, I hope this keeps up .
Thanks for all the tips and support. denise
__________________
Dx Feb o6 idc
2+ nodes er-/pr- her2++
8 rounds a/c w 4 rounds of taxotere every other week
lumpectomy w node disection
rads 32 days
Aug 06 clean pet
Herceptin every 3 wks
Feb 07 clean pet
Aug 07 pet shows micro in lung and 1 pos node
Oct 07 Tykerb & Xeloda
Dec. 07 Pet scan node was 1.8 now .08 and no change in lung. after 3 cycles
Feb. 08 Pet Shows no change in lung nodule lymph node grew 1.8 and second node pos.
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