HonCode

Go Back   HER2 Support Group Forums > Herceptin / Tykerb
Register Gallery FAQ Members List Calendar Search Today's Posts Mark Forums Read

Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb

Reply
 
Thread Tools Display Modes
Old 04-27-2007, 07:03 PM   #1
Sherryg683
Senior Member
 
Sherryg683's Avatar
 
Join Date: Feb 2006
Posts: 1,014
Best time to take tykerb

For those of you that are on it, what have you found is the best time to take the Tykerb to minimize side effects. I was thinking of taking it before bed. Didn't realize you had to take 5 pills. I have my supply sitting here but I'm sort of afraid to start taking the things...sherryg683
__________________
Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
Sherryg683 is offline   Reply With Quote
Old 04-27-2007, 07:27 PM   #2
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
I haven't started yet, but my doc told me today that when it arrives and I start it, it is fine to take it at night before bed... don't know if that helps you at all, but I don't know anything about side effects yet. Just that the doc said it's OK to take at night.
__________________
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 04-27-2007, 08:08 PM   #3
Esther
Senior Member
 
Esther's Avatar
 
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
When I first got the pills, I took them in the morning, then switched to night. I think the side effects are less when I take them at night.
Esther is offline   Reply With Quote
Old 04-27-2007, 08:59 PM   #4
Sherryg683
Senior Member
 
Sherryg683's Avatar
 
Join Date: Feb 2006
Posts: 1,014
Tks..I bit the bullet and took the pills tonight. I figured by the time I knock myself out with my ambien, if I were to get nauseated..i'd sleep right through it..lol..sherry
__________________
Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
Sherryg683 is offline   Reply With Quote
Old 04-28-2007, 08:24 PM   #5
ron
Junior Member
 
Join Date: Apr 2007
Posts: 1
Mom's tired.

Hi...

my 69 year old mother switched from Herceptin to Tykerb 3 week ago. She did great on Herceptin. Now with Tykerb/Xeloda cocktail she has irritated eyes, diarrehea, little nausea, and is just plain ol' tired. She switched to bed time on her doctors advice which helps a little, but she is getting tired of being tired...

any other thoughts out there for dealing with that?

Ron
ron is offline   Reply With Quote
Old 04-28-2007, 09:50 PM   #6
Esther
Senior Member
 
Esther's Avatar
 
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
Ron:

Have your mom talk to her onc., I have heard of others being put on drugs such as Ritalin to combat fatigue and having it be succesful.

Her onc will have an idea of possible things to try, and if they would be appropriate for her at this time.
Esther is offline   Reply With Quote
Old 04-29-2007, 03:04 PM   #7
Adriana Mangus
Senior Member
 
Join Date: May 2006
Location: California
Posts: 668
Treatment

Hi Sherry: Are you still receiving Herceptin? Good luck with Tykerb, am sure it will do wonders for you.
__________________
1994 - rt brst, .lump, underarm node dissection,chemo+rad 1.2 cms, Grade 3.
28 nodes neg
Er,Pr, Positive HER2 status unknown
2003- Recur to rt lung.July 16 ( B-Day!)
Her2+++ Er,Pr, Negative
2003 - Aug04--Navelbine + Herceptin
2004- 2007--
NED - Herceptin, only
2007 Feb-April Xeloda added to hereceptin
2007-May Back on Navelbine+Herceptin
2008-Feb-Mar 15 Ses Rad to Rt. Lung
2008- Oc 17 Add Tykerb to Herceptin
2009- June-- Discont Tykerb
2009 July 7--Current Taxol + Herceptin
2009 Dec--Discontinued treatment due to progression. Looking into cyberknife.
2010-Aug Accepted to TDM1, no SE, except liver count went up.
2010-2011 September got kicked out of the trial, due to a small spot found on lung.
2011- 2012 September thru early 2013 on Herceptin
2013- March Bone density shows small spot on 5th rib.
2013 - April 4th appt with onc. will post after discussing course of treatment.
2013-March-April Cyber knife to brain and radiation to rib. Chest --base line before chemo-CT-Scan stable for lung issue. CA2729 Normal.
2013 April Herceptin- TDMI
2013 Sept Herceptin + Perjeta . CA2729 within normal range. Brain and Pet scans October 31st. will post results.
2013 October Brain MRI- mixed response. Will see Onc/rad on Halloween.
2013 October/November Brain-MRI nothing new. Repeat MRI next year in May.

2013 December Continue Herceptin and Perjeta. Stable at the moment.
2014 February Brain MRI -clear!
2014 January Added Taxotere to Perjeta+Herceptin.
2014 March Stopped chemo-chest ct-scan next.

2014- March Scans shows tumor's larger, CA2729 higher. Discontinue Herceptin.
2014 April Perjeta+ Halaven
2014 April CA2729 went down 60 points after one cycle. Cough does not want to go away.
2014 June Continue on Perjeta + Halaven-- no more cough. Stable
2014 June Back on Herceptin + abraxane
Adriana Mangus is offline   Reply With Quote
Old 04-29-2007, 08:58 PM   #8
Lala
Senior Member
 
Lala's Avatar
 
Join Date: Feb 2006
Location: South Florida
Posts: 131
Sherry,

I take my dose at night. I found this the best time; less side effects and it is easier as you have to wait 2 hours after a meal.
Best of Luck to you.
__________________
Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
Lala is offline   Reply With Quote
Old 04-29-2007, 09:20 PM   #9
Lala
Senior Member
 
Lala's Avatar
 
Join Date: Feb 2006
Location: South Florida
Posts: 131
Ron,
The Xeloda can cause side effects if the dose is too high. Perhaps the oncologist can lower her dose.
Fatigue is a side effect of all chemotherapy. The diarrhea is more of a concern, you need to watch out for dehydration.
There are several ways to combat the diarrhea, one is diet and the other is medication such as Lomotil which needs a prescription. Many take imodium, however lomotil is a little stronger. If diarrhea is more than a few times a day you should call the oncologist.
Best of luck to your Mother.
__________________
Lala
DX Fall05 Stage 4 er+ pr+ her2+ liver and bone mets
DX Fall06 Brain mets, Brain mets gone Spring 2007
Lala is offline   Reply With Quote
Old 04-30-2007, 07:09 AM   #10
Shell
Senior Member
 
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
Sherry-

This time around, I am taking the tykerb at night before bed - I just started with it, so we'll see how it goes.

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
Shell is offline   Reply With Quote
Old 04-30-2007, 08:50 AM   #11
Margerie
Senior Member
 
Margerie's Avatar
 
Join Date: Aug 2006
Posts: 492
I want to wish you luck Sherry! Hope you don't have too many side effects. Let us know how you are doing.
__________________
Are we there yet?


Dx 10/05 IDC, multi-focal, triple +, 5 nodes+
MRM, 4 DD A/C, 12 weekly taxol + herceptin
rads concurrent with taxol/herceptin
finished herceptin 01/08
ooph, Arimidex, bilateral DIEP reconstruction
NED
Univ. of WA, Seattle vaccine trial '07
Margerie is offline   Reply With Quote
Old 04-30-2007, 10:44 AM   #12
Sherryg683
Senior Member
 
Sherryg683's Avatar
 
Join Date: Feb 2006
Posts: 1,014
I have take it 3 times so far , at night and have no problems with it yet. I am still on herceptin...sherry
__________________
Sherry

Diagnosed: December , 2005 at age 44
13+ positive lymph nodes
Stage IV , Her2+, 2 small mets to lungsChemo Started: Jan, 2006
4 months Taxotere, Xeloda, Hercepin
NED since April 2006!!
36 Rads to follow with weekly Herceptin indefinately
8 years NED now
Scans every year

Life is not about avoiding the thunderstorms, it's about learning to dance in the rain!
Sherryg683 is offline   Reply With Quote
Old 05-01-2007, 04:27 PM   #13
bailey
Senior Member
 
Join Date: Apr 2007
Location: Arizona
Posts: 29
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
bailey is offline   Reply With Quote
Old 05-02-2007, 08:45 AM   #14
SoCalGal
Senior Member
 
SoCalGal's Avatar
 
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
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
__________________
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.
SoCalGal is offline   Reply With Quote
Old 05-02-2007, 04:48 PM   #15
koolmom
Senior Member
 
Join Date: Apr 2007
Location: Asheville, North Carolina
Posts: 31
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.
__________________
Koolmom
koolmom is offline   Reply With Quote
Old 05-02-2007, 05:08 PM   #16
bailey
Senior Member
 
Join Date: Apr 2007
Location: Arizona
Posts: 29
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?
B
bailey is offline   Reply With Quote
Old 05-02-2007, 09:58 PM   #17
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
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...
__________________
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 05-03-2007, 07:30 AM   #18
koolmom
Senior Member
 
Join Date: Apr 2007
Location: Asheville, North Carolina
Posts: 31
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!
__________________
Koolmom
koolmom is offline   Reply With Quote
Old 05-03-2007, 07:44 AM   #19
bailey
Senior Member
 
Join Date: Apr 2007
Location: Arizona
Posts: 29
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
bailey is offline   Reply With Quote
Old 05-03-2007, 09:42 AM   #20
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
the B6 or Bcomplex is supposed to help mitigate the chances of hand/foot syndrome... I am willing to give it a shot!
__________________
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
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump


All times are GMT -7. The time now is 11:40 PM.


Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021
free webpage hit counter