| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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05-13-2007, 08:58 PM
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#1
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Watch Out Cancer Xeloda/Tykerb comes!
Hi Sherry, Brenda, Carolyns, Flori, Lala and Bailey,
After a month delay I decided to start Xeloda tomorrow and add Tykerb in the evening if/when it comes! They promised to Fedex it on Friday.
I learned so much from your postings, I feel quite prepared. I feel so much better about this than just about a year ago when I was on A/C I had only my doctor to turn to - and back then I was too proud to call them...
The plan is that I would stay on 4 to 6 cycles of Xeloda and a year or possibly longer on Tykerb.
My only question right now: taking Tykerb at night still seems to work best for most of you?
Hope you all had a happy Mother's Day!
With hugs,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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05-13-2007, 10:34 PM
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#2
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Hi Odette - welcome to the club. Yippee Tykerb/Xeloda! I have a soft spot in my heart for this combo, and high expectations. My significant other wants to name any new pets we might get Tykerb and Xeloda! LOL - he's a kook!
I am still just rocking along on Xeloda - no side effects at all.
I took my very first Tykerb last night at bed time. NOTHING HAPPENED! I think it might have made me a little restless, but that is it. Oh, and a little acid reflux burn.
Since I am not an early riser, it would be lunch time by the time I got all of my meds in if I also took Tykerb in the AM. I usually eat b-fast around 10:00A, and once a week I have to take the Fosamax 30 min before b-fast. Then, midway through b-fast I take AM vitamins and about 15-30 min after b-fast I take Xeloda. Then around 7/8:00P I eat dinner, take vitamins halfway through, and then Xeloda. Then I wait at least 2 hours and take Tykerb before I go to bed...
I have never had so much structure in my life! But I am figuring it out...
__________________
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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05-14-2007, 06:25 AM
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#3
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Senior Member
Join Date: Mar 2006
Location: IOWA
Posts: 243
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Structure - boy isn't that the truth! I feel like a baby on a schedule. I eat breakfast and take my am Xeloda between 7-8 am. I am on a trial for hand/foot syndrome and need to put the cream on my palms and soles so I do that after I bathe in the morning. At noon, I take the B6 for the trial, my clonidine for hot flashes and a calcium. I eat my evening meal so that I can take my evening Xeloda around 7-7:30, the take my Tykerb between 9-9:30 and do the cream thing to my palms and soles again. So far this routine is working pretty well for me. I am more fatiqued on this than any of the other chemos I have taken. I have had 3 times I needed the imodium, but then things stabilize after that. The last couple of days I have had a few zits on my chin. Tomorrow I start the week off of the Xeloda, so I am curious to see how I feel then.
__________________
Andi
-- ------------------------
Stage IIIC, 17 of 20 Nodes +, E+, Her2+++
Diagnosed 6/30/05
Lumpectomy 7/13/05
Dose Dense A/C x 4
Weekly Taxol + Herceptin x 12
Remainder of year Herceptin Every 3 weeks (completes 9/13/06)
Radiation completed 2/28/06
Currently on Tamoxifen
Dec 06 - Pleural effusion treated with pleurodesis
Now er/pr-, her2++
1/07 started weekly Navelbine plus Herceptin
Discontinued Tamoxifen
4/27/07 CTshowed progression
5/01/07 Began Tykerb/Xeloda + Zometa
5/22/07 Stopped treatment due to great progression
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05-14-2007, 06:32 AM
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#4
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Senior Member
Join Date: Apr 2007
Location: Shaker Heights, Ohio
Posts: 86
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Hi Brenda,
it was swell to get a letter from you when I got up before starting X.
I had extra early breakfast then I took my 3 500mg pills.
I'm going to run out to get the B-6 and what you recommended the Bentonite Clay and the Carob powder. How about chocolate? Could that be a natural remedy for the divas? (I remember my Grandmother used to blame chocolate for constipation in any of us grandchildren, hmm)
I'll just try to cook and organize things today and wait for the Fedex guy.
Oh and of course confer with my social worker about coverage of X.
Your lighthearted approach encourages me too.
I can picture you a sprightly octogenarian with two beautiful cats patrolling the property. Your little great grandson asking: Gramama why are the cats called Tykerb and Xeloda? You would reply with a story about the twin champions (dispatched by you the queen) who conquered evil Canceribaldus.
Wishing you and all of you brave queen and princess warriors a great day,
Odette
__________________
May 18, 2006 Age 52,
Diagnosed infiltrating ductal carcinoma
er/pr- HER2 + 3.9 by FISH
June-August 2006 AC chemo
August-October 2006 Taxotere + Herceptin
November 18, 2006 Mastectomy 16 involved lymph nodes
Jan 2, 2007 start radiation
Stage IV, Jan 12, 2007 recurrence in cervical lymph nodes while on Herceptin, stopped Herceptin
Rad oncologist extended the radiation field, good response
Started Tykerb Xeloda on beginning of May 2007
Progression to lungs and conglomerate lymphadenopathy July 2007
Undecided about next treatment
'One does not get to choose one's adventures'
I'm experimenting with my diet, using green tea, flax seed curry and olive oil
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05-14-2007, 08:34 AM
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#5
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Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
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Hi Odette,
I am glad to hear that you are doing well.
I continue to take Tykerb in the morning. I wake up one hour early and take the pills with a large bottle of water. Then I go back to sleep. I always love turning the alarm clock off and going back to sleep...it is a guilty pleasure for me.
So far, I just go to the bathroom a couple of times before 9:00am and then I am done with that part of the day. Similar to life before Tykerb only one extra trip to the bathroom in the morning. I took my 5th dose today.
Good luck and keep us posted.
Love, Hope, and Peace,
Carolyn
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05-14-2007, 09:43 AM
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#6
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Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
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When I was on the xeloda/tykerb trial, I took tykerb in the a.m. Now I take it at night, and usually just have one episode of diarhhea in the morning. I prefer it at night...
Regards,
__________________
Shell
init diag 3/17/03-stage IIIC
ER-/PR-/HER2+++
CET x4 neo-adjuvant
lump & SNB 8/03
CET x2
radiation and herceptin/navelbine 11-03-1/04
1st reoccur to lymph nodes 8/04
complete axillary dissection 12/04
herceptin/taxotere til progression (lungs) 3/05
xeloda w/out lapatinib trial 6/05
lapatinib/tykerb added 4/06
ended trial 8/06 due to progression
doxil / avastin 11/06-12/06 - wasn't working
navelbine/herceptin/avastin 12/06/3/07 - progression
gemzar/carboplatin/tykerb 4/07
mri shows extensive mets to bone in pelvic area 6/07
switched to abraxane (3 on/1 off) + tykerb 6/07
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05-14-2007, 11:44 AM
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#7
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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HI all - and Odette, thanks for the story! I like to picture us all as octogenarians! For me that means 35 more years as a Diarrhea Diva, always with two cats patrolling the yard. Maybe instead of calling the cats Tykerb and Xeloda, I will rename Ty/Xel after my cats... Milo and Dasher! Hmmm, I like that.
Speaking of which, I finally had to take the bentonite clay around lunchtime today due to the side effects of Milo. Will let you know how it works...
(1 TBSP shaken well in a couple oz. of water or mixed well in applesauce... followed by LOTS of water all day long. Another dose of Bclay may be taken later in the day if needed.... we shall see)
__________________
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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