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 07-29-2009, 06:20 AM   #1
Unregistered
Guest
 
Posts: n/a
herceptin + tykerb (no xeloda)

I will soon be starting Tykerb (1000mg/day same as 4 pills/day) in addition to my Herceptin treatment. I am not on Xeloda.

For anyone who is already on Tykerb + herceptin but not on Xeloda:
1) how long have you been taking Tykerb + Herceptin?
2) what side effects did you experience?
3) how soon after starting Tykerb did you experience the side effects?
4) what did you do or take to minimize the side effects?
5) did you start off at the max dose, or did you gradually work your way up to the max dose?
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take?
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see?

Any advice, recommendations and personal experiences are appreciated.

Sincerely,

Dikla
Her2+, ER+, PR+
previous mets to bone
current mets to lung
currently on Herceptin, Faslodex, Zoladex, Zometa
will soon start Tykerb
  Reply With Quote
Old 07-29-2009, 11:36 AM   #2
Nancy L
Senior Member
 
Nancy L's Avatar
 
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
Re: herceptin + tykerb (no xeloda)

I am ER- PR- Highly HER2 positive (20.2 Fish score) with mets to the neck so my breast cancer is different than yours. I am only on Herceptin/Tykerb so I will try to answer your questions.
1) Started 3/14/09 at 1000 mg/day. Reduced to 750mg/day as of 3/24/09
2) Experienced severe hives all over body after 7 days. Stopped Tykerb for 3 days and then restarted at reduced dosage. Rash on face lasted about two months—looks like acne. Chronic diarrhea and fatigue which I don’t think are going away. Shortness of breath and chronic cough which the docs do not feel is a side effect of Tykerb but rather inflammation of my lungs.
3) Immediately
4) I take 150mg Zyrtec, 150mg Zantac, and lomotil almost daily. I am also taking Prednisone for my cough. Steroids in general make one feel better so that may factor into how I am doing.
5) See #1
6) See #2
7) Pet Scan 12/15/08 1.5X1.2cm with a max SUV of 3.3
Pet Scan 3/9/09 2.2X2.5cm with a max SUV 6.3
Pet Scan 6/1/09 1.2 X1.2 cm with a max SUV 3.0
(tumor markers do not work for me so I will continue to get Pet scans every 3 months---next one scheduled for end of August)

Tykerb is a much harder drug to tolerate than Herceptin. There is very little data on how this combo is working. The longest I have heard is one year---not what I would like but at least I know. Dikla, please keep me posted on how you do and I will do the same. If you have other questions, feel free to e-mail me at nana@lamarca.org.
Nancy L is offline   Reply With Quote
Old 07-29-2009, 02:09 PM   #3
Darlene Denise
Senior Member
 
Darlene Denise's Avatar
 
Join Date: Aug 2008
Location: Virginia Beach, Virginia
Posts: 145
Re: herceptin + tykerb (no xeloda)

Nancy: I too had to drop Tykerb dose down to 3 pills 750 mg a day along with week on week off 1000 mg of Xeloda and since I had to reduce dose of Tykerb, I begged for Herceptin and onc agreed and gave me the Herceptin today. I was just too nervous that 750 mg is not going to be an effective dose. This dose has been okay for me. No stool soup, just fatique and low appetite. I had the chest pain and cough at 4 pills and it increased the cough a lot when I tried 5 pills. those symptoms went away at lower 750 dose.

Have you tried Suki oil on your face rash? I got rash right away on my face and the oil seemed to clear it right up.

Hope we all find benefit from this combo.

Feel well soon...Darlene
__________________
12/14/07 IDC ER- PR- HER2+++ LIVER METS AT DX CONFIRMED BY LIVER BIOPSY
01/14/08 2 AC TREATMENTS-NOT WORKING
02/04/08 13 TAXOL, CARBO, HERCEPTIN TREATMENT-EXCELLENT RESULTS!
05/12/08 HERCEPTIN EVERY 3 WKS
08/22/08 BRAIN METS! 8 <5MM
09/17/08 CYBERKNIFED BRAIN METS
10/20/08 BRAIN METS SHRINKING
12/29/08 BRAIN SCAN SHOWS 1 LESION GONE, 7 SHRINKING & STABLE, 1MM ? SPOT
01/16/09 LIVER REOCUR-XELODA/HERCEPTIN
03/02/09 BRAIN SCAN 2 LESIONS GONE, 5 STABLE, 1MM ? SPOT STILL A ?
3/27/09 REGRESSION OF 2 LIVER LESIONS XELODA & HERCEPTIN
06/08/09 STUPID BRAIN HAS 3 LESIONS
06/29/09 CYBERKNIFE
07/01/09 LIVER REGRESSION NO NEW METS
07/07/09 TYKERB XELODA HERCEPTIN
11/11/09 GEMZAR/HERCEPTIN FOR LIVER PROGRESSION
03/22/10 BRAIN MRI GOOD-3 SMALL NECROSIS LEFT FROM ORIG 11!!
03/26/10 CHANGE TO NAVELBINE/HERCEPTIN 3 LIVER LESIONS PROGRESSING IN SIZE
05/21/10 NAVELBINE/HERCEPTIN WORKING!
07/19/10 GOOD BRAIN MRI
08/20/10 LIVER PROGRESSION
09/08/10 TDM1 - NASHVILLE TN
01/10/11 LIVER RESPONDING TO TDM1
Darlene Denise is offline   Reply With Quote
Old 08-01-2009, 10:50 AM   #4
vlcarr
Senior Member
 
vlcarr's Avatar
 
Join Date: Jun 2009
Posts: 343
Re: herceptin + tykerb (no xeloda)

I'm only on Herceptin + Tykerb for a clinical trail to see if tumor will shrink. Tumor started out at 8cm, not hormone receptive, Stage II, speck in one lymph node. I get Herceptin weekly and take 4 Tykerb each day. Below are my answers to your questions.





how long have you been taking Tykerb + Herceptin?
6 weeks
2) what side effects did you experience?
fatigue, runny nose, mouth sores-use Prevention mouth rinse and a dr script for "majic mouthwash" when they really get bad. They were only really bad for about 3 days, better now. I have had a little diarrhea but rarely. Trouble sleeping. My potassium level dropped dangerously low 3 weeks ago--they gave me a potassium drip and I take 2 potassium pills a day. Have felt much better since that went back up. The first month I had no appetite but that is improving. Also have bloody nose from time to time.
3) how soon after starting Tykerb did you experience the side effects?
Had diarrhea at first but got better, runny nose started in the beginning along with the fatigue, mouth sores didn't occur until about 3 weeks in. So far, no skin rash.
Bloody nose from time to time. Use A & D ointment in nose when that flares up.
4) what did you do or take to minimize the side effects?
See above. Dr also gave me ambien to help with sleeping and Allegra for runny nose. Avoid salads as they bring on the stomach issues
5) did you start off at the max dose, or did you gradually work your way up to the max dose?
started with 4 pills a day and will continue that for 3 months.
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take?
Body seems to have adjusted somwhat. The fatigue is still there but not as often as it used to be.
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see?
My tumor is now 2cm x 2 1/2. Shrinkage started for me within the first 2 weeks. 2 weeks ago it was 5x3 and it started out at 8cm.

I hope this helps. My side effects for me seem to be unpredictable. I would usually feel bad on Sat & Sun but that seems to be getting better but could feel like crap tomorrow?

I hope this works with you. So far it's working for me. I am newly diagnosed in May 2009.
vlcarr is offline   Reply With Quote
Old 08-04-2009, 06:47 PM   #5
Unregistered
Guest
 
Posts: n/a
Red face Re: herceptin + tykerb (no xeloda)

I began taking Herceptin and Tykerb last November in a clinical trial for early stage HER2+. Actually my cancer was diagnosed stage 3 because evern though my tumor was 3cm, I had 21 positive lymph nodes. I was very lucky, there were no other organs involved, so I was able to get into this trial. The first 12 weeks (this actually turned into 14 weeks because two weeks my meds had to be held because of low WBC and fever) I also received Taxol. These treatments were weekly. In Feburary I began taking the Herceptin evey three weeks and the Tykerb continued on a daily basis. I will take both of these a total of one year and will finish before Thankgiving.

The study had reduced the initial dosage to 750 my as long as the patients are also receiving Taxol. I had sever diarrhea, so they dropped my dose to 500 mg during those first 14 weeks. Now I take 750 mg and have learned to manage some of the side effects. A low fiber diet that aviods fresh fruits, vegs, and whole wheat bread has really helped. I also aviod dairy products. I do still have some cramping and loose stools though. I take 2 Imodiums and 1 Lomotil at a time and I have found this helps me. A number of women have dropped out of the study because of this.

I do have fatigue, but it is much better than when I was taking regular chemo. The Tykerb also causes me to have very sore fingers and toes. They will bleed when bumped and I have had to see a poditritist twice for ingrown toenails.

However, I look upon these side effects as aggravations. When I first began treatment I had Adromycin and Cytoxin for eight weeks. I have also had radiation. I feel so much better now that I am on only Herceptin and Tykerb. My blood work in normal and my liver functions are too. I am beginning to get my life back!!

Good luck to you. You will be in my prayers.
Sandra
  Reply With Quote
Old 08-04-2009, 07:21 PM   #6
Carolyns
Senior Member
 
Join Date: Jun 2006
Location: South Florida
Posts: 477
Re: herceptin + tykerb (no xeloda)

Hi Dikla,

I took Tykerb w/ Herceptin for 3 months and stayed stable.
For anyone who is already on Tykerb + herceptin but not on Xeloda:
2) what side effects did you experience? Loose bowel movement one time per day.
3) how soon after starting Tykerb did you experience the side effects? Soon after starting.
4) what did you do or take to minimize the side effects? Nothing
5) did you start off at the max dose, or did you gradually work your way up to the max dose? Started w/ max dose.
6) do the side effects persist or does your body adjust to it and normalize? If so, how long did it take? Stayed the same.
7) Did Tykerb help shrink your mets? How long did it take to have an effect and what kind of shrinkage did you see? For me it kept me stable with the mets that I had for 3 months.

Any advice, recommendations and personal experiences are appreciated. I hope that this is a good combo for you. I found it to be so easy.

Love, Hope, Peace, Carolyn
Carolyns is offline   Reply With Quote
Old 08-06-2009, 11:06 PM   #7
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
Re: herceptin + tykerb (no xeloda)

I am on Tykerb/Herceptin. I was on Tykerb/Xeloda for 18 months. After progression, we dropped Xeloda and added Herceptin. I have been on it 10 months.

I get Herceptin every 3 weeks. After adding Herceptin, we had to drop my Tykerb from 5 pills (1250mg) to 4 pills (1000mg) due to the diarrhea side effect.

My diarrhea got better after that for about 7 months, but it has since become a cyclical thing - I get about 7-8 days of normalcy and then I get a bout for apx 24 hours that has to be controlled with immodium, then I have a 24-36 hrs of constipation followed by the week of normalcy and then the cycle starts again. I do notice that it is also affected adversly by undisciplined diet.

I have remained stable on this combo with the exception of one tiny brain met that we zapped in June.
__________________
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 08-09-2009, 09:52 AM   #8
Nancy L
Senior Member
 
Nancy L's Avatar
 
Join Date: Apr 2009
Location: La Quinta, Ca
Posts: 253
Re: herceptin + tykerb (no xeloda)

Sandra, Thanks for reporting the problem you had with your fingers, toes and nails. I have had the same thing happen but didn't associate it with Tykerb---now I know it probably is the root cause.
Nancy L is offline   Reply With Quote
Old 08-10-2009, 05:08 PM   #9
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
Re: herceptin + tykerb (no xeloda)

It's interesting about the fingers and toes. I only had those problems on Tykerb/Xeloda, but they went away within a few months of dropping Xeloda (hand/foot syndrome).

I don't have them now on Ty/Herc...
__________________
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 12-12-2009, 01:18 PM   #10
Karen t
Senior Member
 
Karen t's Avatar
 
Join Date: Sep 2005
Posts: 66
Re: herceptin + tykerb (no xeloda)

Hi Darlene - are you still on the Herceptin/Tykerb combo, and how are you doing? I looked online at Suki products and didn't realize there are so many although none is called "oil." What is the exact name of the one you used? Many thanks, Karen
Karen t is offline   Reply With Quote
Old 12-12-2009, 07:26 PM   #11
barleyparrish
Junior Member
 
Join Date: Dec 2009
Posts: 1
Re: herceptin + tykerb (no xeloda)

Are there heart concerns taking Tykerb and Herceptin together?
How is everyone who is on this combo doing?
barleyparrish is offline   Reply With Quote
Old 12-15-2009, 09:38 AM   #12
hutchibk
Senior Member
 
hutchibk's Avatar
 
Join Date: Oct 2005
Posts: 3,519
Re: herceptin + tykerb (no xeloda)

I haven't had any heart concerns... I may be wrong but I believe that they expect those more in patients over 60, I am 50 and my heart appears to be unaffected.
__________________
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 12-16-2009, 01:23 PM   #13
Sheila
Senior Member
 
Sheila's Avatar
 
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
Re: herceptin + tykerb (no xeloda)

I have only been on the Herceptin/Tykerb for 6 weeks, 1250 a day of Tykerb, and I am soon to be 58. No heart problems and I have been on Herceptin for 6+ years.
Actually, i feel better than I have in some time on this combo.

I found the SUKI oil online at the cosmetics kitchen...it cleared the rash in no time.

Hope this helps.
__________________
"Be kinder than necessary, for everyone you meet
is fighting some kind of battle."



Hugs & Blessings
Sheila
Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
Sheila is offline   Reply With Quote
Old 01-05-2010, 06:26 PM   #14
Miriam
Member
 
Join Date: Apr 2006
Posts: 12
Re: herceptin + tykerb (no xeloda)

I started on a Tykerb and Xeloda program about five weeks ago. After two weeks I had to stop because of the diarrea and mouth sores. Long story short my husband saw that something was wrong and called the ambulance. I was in a comma for three days and know nothing of going to the emergency room and hospital. My ammonia count was 150. If it wasn't for my husbands quick action I wouldn't be here today. I had just come from the clinc that day where all they want to do is hydrate when something is wrong.
So have someone watch you closely. If you become disoriented go to the hospital ASAP.

I came down with breast cancer in 2003. Had lempectomy, chemo and radiation. Then a year on Hercesptin. I was clear until July of last year and then my tumer count stated going up. It had spread to my liver and lung.Took Taxol and the tumor count came down from 1300 to 57. Then started going back up 259. So then the Doctor stated me on Tykerb and Xeloda. That just about took my life. So now I just started on Tykerb only. 1250mg. I have been on Herceptin for nine months already.

Miriam
Miriam is offline   Reply With Quote
Old 01-07-2010, 01:57 PM   #15
cecw
Member
 
Join Date: Jan 2010
Posts: 8
Smile Re: herceptin + tykerb (no xeloda)

taking Tykerb 1500mg daily since may 08 no significant side effects occasionly diarrhea. A little tired. heart function numbers going down but not in bad range. Maybe the combination is the problem. I was told by trial doc that tykerb crossed the blood brain barrier while herceptin did not. Does anyone know if this is true? Best to all Cecw
cecw is offline   Reply With Quote
Old 01-07-2010, 02:25 PM   #16
Miriam
Member
 
Join Date: Apr 2006
Posts: 12
Re: herceptin + tykerb (no xeloda)

Cecw,
That is a long time to be on a Med. What are your results. Is it doing any good or just making the Drug Companies richer. Tykerb cost is outrageous.

Miram
Miriam is offline   Reply With Quote
Old 01-07-2010, 06:40 PM   #17
cecw
Member
 
Join Date: Jan 2010
Posts: 8
Question Re: herceptin + tykerb (no xeloda)

Miriam don't know how its working. part of alto trial Hercptin with Tykerb in different combinations or either one alone as first line treatment so drug is free. Had masectomy 2 10 09 her2+++ 5 of 14 lymph nodes positive. Everyone on this site seems to be getting scans. I've never had any how do they know it's not already spread? Docs tell me it isn't anywhere else. How do they know? When do people usually get their first scan? Best Cecw
cecw is offline   Reply With Quote
Old 01-07-2010, 07:23 PM   #18
Miriam
Member
 
Join Date: Apr 2006
Posts: 12
Re: herceptin + tykerb (no xeloda)

Cecw,
I've been on Herceptin since January with Taxol. Worked great until my tumor count went down to 57 then started back up nearing last Taxol treatment. So the Doctor started me on Tykerb and Xeloda which was a disaster. So now it's just Herceptin and Tykerb. I get a scan every three months.

Miram
Miriam is offline   Reply With Quote
Old 01-25-2011, 01:32 PM   #19
hezzy
Senior Member
 
Join Date: Aug 2009
Location: Paxton, Ill
Posts: 32
Re: herceptin + tykerb (no xeloda)

I haven't had any side affects to Herceptin. On Tykerb I had over freq.bathroom breaks w/severe diaria no matter what I did I couldn't find balance and didn't want to leave home.
I read about diphen/atrop and wanted to know how many pills to take they gave me a prescription to help me gain control. After a month or so I learned taking one the first five min. I woke up and than taking another five min. after taking the Tykerb I didn't have too be in the bathroom frequently anymore. Hugs. I hope that you do not experience those problems on Tykerb.Hugs
__________________
-July 07 - DX w/ICD stage 3a, est+, her2+
- started a/c four doses
-Aug 07 -DX w/ bone mets to shoulder and rib 10 days rads
- 6 mths taxol
-6 mths abrexene
- Nov 07 started herceptin still on
- was on tamoxifin wasn't working, gettin something new soon


Aug 09
- brain mets
- 3 tumors
- highest being 4cm large
- others under 2cm
- WBR rads in morning, than afternoon hitting each one direct
- rads to vertebrate

- Sept 09
- getting ready to start Xeloda
- continue herceptin
- just finished w/ rads on brain mets, and vertebrate

(think im doing this right now)
hezzy is offline   Reply With Quote
Old 01-26-2011, 02:08 PM   #20
schoolteacher
Senior Member
 
Join Date: Feb 2008
Location: Georgia
Posts: 1,486
Re: herceptin + tykerb (no xeloda)

Hezzy,

Thank you for posting. I have had diarrhea really bad this last cyle of Xeloda and Tykerb. I am going to try your suggestion. I am fine until I come off of the Xeloda. In fact, I am constipated some. The morning I wake up and take my Tykerb alone, I am going to take the diarrhea pill five minutes after I take the Tykerb.

Amelia
schoolteacher 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 02:26 PM.


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