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Old 05-01-2007, 04:27 PM   #1
bailey
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I will be starting the tykerb/xeloda combo early next week. I was told I will be taking 5 pills/day of tykerb at 250mg. each and with the xeloda I'll be taking 3 pills, 2 times/day at 500mg. each. I was told to take the tykerb in the a.m. with water an hour prior to food and the xeloda with food 3 in the a.m. and 3 with dinner - 14 days on with xeloda and 7 days off.
How does this sound to you ladies who are taking these 2 drugs and do you have any recommendations for me?
would appreciate all the info. I can get.
Thanks
B
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Old 05-02-2007, 08:45 AM   #2
SoCalGal
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I think Tykerb "cares" is an oxymoron.

Hi Bailey,
I am on day 27 of the ty/xeloda deal. I was taking (5) tykerb in the AM then wait one hour, and eat breakfast then take 2 xeloda. Then after dinner anothr 2 xeloda. I think the recommendation from the trial is 2000 mg a day of xeloda (total 4 pills). For the past 3 nights, I tried tykerb right before bedtime, at like 11:00. I think it was waking me up with the runs, so today I'm switching back to the morning routine...infact, I just took them now.
Someone told me (pharmacy or Tykerb "cares") that you need to wait 2 hours after a meal but now I've read the fine print which states 1 hour prior or 1 hour following.

BTW I think Tykerb "cares" is an oxymoron. Today I am going to try and stay on a low dose of ativan and see if that doesn't help calm my side effects with the nausea.

Hope you have an easy day, Flori
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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 05-02-2007, 04:48 PM   #3
koolmom
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Unhappy

I'm right here with you guys. Start Xeloda 9 days ago. Just got my Tykerb today. I came on here to see if I was supposed to take the 5 pills at the same time. I assume I am. Still debating the night vs. morning dosage. I guess I will try it tonight. I'm glad I have found this support board. I feel like everyone has there arms around me...even though I have only posted once, just reading the posts, we are all in the same boat.....sometimes we feel like the boat is sinking, but we just start bailing harder. LOL.
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Old 05-02-2007, 05:08 PM   #4
bailey
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I will be starting next Wed. There are a few different ways I've read to take all these meds - some swear by Tykerb at night but someone said they woke up a few times with the runs others take it in the morning. The xeloda is am and pm. With the tykerb you take the 5 pills all at once - that much I do know. How many xeloda are you taking a.m. and p.m. - I will be taking 3 a.m. and 3 p.m. - seems a bit high from what I've read so we'll see how it goes. Just thankful that there is a new drug out there like this and the side effects can be adjusted with your onc accordingly. I think I'll keep daily notes on how I feel at least for awhile to go over with the onc.
Otherwise we are all good to go and yes in it together. I too am thankful for these posts and someone to talk to about it.
How have you been on the xeloda so far?
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Old 05-02-2007, 09:58 PM   #5
hutchibk
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I start Xeloda tomorrow morning and Tykerb on Friday or Monday, depending on when it arrives in the mail.

Lets see, here's what I learned today...

Xeloda I will take 3pills AM (1500 mg) and 4pills PM (2000 mg) = 3500mg(!) for 14 days and then 7 days off.

Tykerb needs to be taken on empty stomach, so I will take the 5pills either {1 hour before breakfast/Xeloda, or 2 hours after breakfast/Xeloda} or {2 hours after dinner/Xeloda, before bed}, every day.

I asked about when to take my B complex and the pharmacist at my clinic said wait 2 hours after each Xeloda... 50mg twice a day. (increasing to 100mg twice a day if needed).

I guess I will need to take my once a week Fosamax 1/2 hour before Tykerb one day every week...might be time to switch to Boniva so I can take it once a month on my Xeloda OFF week.

I have my Zofran and immodium ready if I need them and gingerale on ice.

Yikes, here we go! Like Taffy said last week, I am a bit apprehensive about what tomorrow might bring...
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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 05-03-2007, 07:30 AM   #6
koolmom
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Cool

Okay, took my first Tykerb last night around 11:30. I had supper late and wanted to be sure I waited two hours. I didn't really feel bad. I did have 3-4 episodes of diarrhea through the night, but it was nausea and diarrhea, just diarrhea.

The Xeloda seems to be going okay. I'm on 3 in the am and 3 in the pm. I see my oncologist next week and think I will be moved to 4 in the morning and 4 pm. I'm on day #10. My 4-6 days I had diarrhea, but it seems to have subsided, until I added the Tykerb. I have felt good on the Xeloda (last night I was very tired). I also took at Ativan with it - just incase. I was a little nervous about the side effects. I keep forgetting to take the B6 Vitamin. So - so far, so good. Keep me posted on your experiences! Thank you guys!
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Old 05-03-2007, 07:44 AM   #7
bailey
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I'm curious to know what they think the B6 is suppose to do for you? Also, have any of you heard of any hair loss. When I received my pills yesterday and the Onc. mentioned it they state some hair loss although when I talked to the care division they said non was reported so I'm curious to know. Also, any reddening of the hands and feet yet?
B
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