| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
 |
07-04-2007, 08:02 PM
|
#1
|
|
Senior Member
Join Date: Jul 2006
Location: Coconut Grove, Florida
Posts: 25
|
Getting Discouraged
Hi All,
I've been up and down with side effects since I started Tykerb in May. The diarrhea seemed better for a while and then it hit me like a ton of bricks last Sunday night. It was so bad that I had to cancel my flight home on Monday (I was visiting my daughter and family in Buffalo) and reschedule for the next day. When I weighed myself this morning, I have lost another 5 lbs. That makes a total of 15 lbs since I started tykerb and 25 lbs since last January when I had the pleuradesis. (155 to 130) My doc didn't want me to lose anymore weight when I went below 140. He's not going to be happy. I look a lot better without the extra lbs. but I'm afraid to lose anymore weight.
I stopped the tykerb on Sunday just to give myself a break. Today I feel much better and can eat again. But I'm beginning to feel really discouraged. If I can't get the diarrhea and loss of appetite under control, I'm not sure I can continue. I haven't had any scans yet to check progression or lack thereof... but I'm pretty sure the doc is going to order a ct next week when I see him.
Just venting to you who understand my dilemma.
UGH!
__________________
Debbie
8/96 - Diagnosed Stage I - 1.8 cm tumor in left breast
0+ lymph nodes, ER+/PR-
Lumpectomy, radiation, CMF x 9, Tamoxifen
6/99 - Stage IV - 1.2 cm tumor in left lung, HER2 NEU +
VATS thoracotomy, Herceptin and Arimidex
2000 - Bone mets to left scapula and right ribs
Herceptin; Taxol x 9, Zometa
2/2001- Rt. lung - 6 mm tumor
Mini-thoracotomy
2/2001 - 12/2006
Xeloda-10 months, Navelbine-10 months,
Gemzar, Abraxane, Taxol/Carboplatin x 10, Aromasin, Faslodex,
Zoladex, Tamoxifen
2001 - Radiation to left scapula for pain managenent
9/2004 CyberKnife to right rib
7/2006 - Pleural effusion - thoracentesis performed twice
1/2007 - Pleuradesis and Taxotere x 5
4/2007 - Stopped Herceptin after 8 years (weekly).
Started Tykerb with Taxotere but stopped after 10 days
5/2007 - Stopped Taxotere, restarted Tykerb and Herceptin
Currently on Tykerb, Herceptin, Zometa
|
|
|
|
07-04-2007, 08:38 PM
|
#2
|
|
Senior Member
Join Date: Sep 2005
Location: Riverside, CA
Posts: 484
|
Debbie if you are on a full dosage of 5 pills a day, ask your onc about reducing it to 4 or even 3 pills a day. The side effects are greatly diminished on a lower dosage.
I still had great results on a dosage of 3 pills a day. Maybe it will work for you? It's worth considering.
|
|
|
|
|
07-05-2007, 05:01 AM
|
#3
|
|
Senior Member
Join Date: Jun 2007
Location: Bergenfield, NJ
Posts: 121
|
Debbie, we have the same dilemma. I've lost 5 lbs this week and I can't afford to lose more. I only weigh 106 now and I'm 5'6 and I don't look good at all being so skinny :-(
When I stopped TYKERB/Xeloda for a week, i was able to eat a lot and have gained few pounds. I had my dosing reduced to 3 pills a day and still diarrhea kept on going and going....
Hugs,
G
|
|
|
|
|
07-05-2007, 07:16 AM
|
#4
|
|
Senior Member
Join Date: Sep 2005
Location: Philadelphia
Posts: 301
|
Debbie-
I was the same way with the diarhhea and the losing weight. I finally stopped the tykerb, because it didn't seem to work for me, and things are finally starting to get under control again... Good luck with it, and definitely explore getting a reduced dosage...
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
|
|
|
|
|
07-05-2007, 03:11 PM
|
#5
|
|
Senior Member
Join Date: Jul 2006
Location: Coconut Grove, Florida
Posts: 25
|
Thanks, Ladies, for your dosage advice. I did reduce from 5 to 4 pills in May. When I see the doc next week, I'll ask him about going to 3 pills a day. Maybe that will work.
It feels so good to be able to eat again! I think I've already gained back 2 to 3 lbs.
This is such a shame - I was so looking forward to Tykerb and never dreamed that I'd have such trouble taking it. I've been on so many chemos over the past 10 years and this is by far the worst! But I'm not giving up yet.
Thanks again and I'll keep you posted on my progress!
__________________
Debbie
8/96 - Diagnosed Stage I - 1.8 cm tumor in left breast
0+ lymph nodes, ER+/PR-
Lumpectomy, radiation, CMF x 9, Tamoxifen
6/99 - Stage IV - 1.2 cm tumor in left lung, HER2 NEU +
VATS thoracotomy, Herceptin and Arimidex
2000 - Bone mets to left scapula and right ribs
Herceptin; Taxol x 9, Zometa
2/2001- Rt. lung - 6 mm tumor
Mini-thoracotomy
2/2001 - 12/2006
Xeloda-10 months, Navelbine-10 months,
Gemzar, Abraxane, Taxol/Carboplatin x 10, Aromasin, Faslodex,
Zoladex, Tamoxifen
2001 - Radiation to left scapula for pain managenent
9/2004 CyberKnife to right rib
7/2006 - Pleural effusion - thoracentesis performed twice
1/2007 - Pleuradesis and Taxotere x 5
4/2007 - Stopped Herceptin after 8 years (weekly).
Started Tykerb with Taxotere but stopped after 10 days
5/2007 - Stopped Taxotere, restarted Tykerb and Herceptin
Currently on Tykerb, Herceptin, Zometa
|
|
|
|
|
07-19-2007, 06:00 AM
|
#6
|
|
Senior Member
Join Date: Jun 2006
Location: South Florida
Posts: 477
|
Hi Debbie,
How are you doing? I hope that you are feeling better and that treatment is getting easier. I wanted to let you know that I had my first PET scan since being on Tykerb and Herceptin (Zometa monthly) and the area of the spine that had the increased activity in the last scans (while on Faslodex and Herceptin) is no longer lighting up. So, the PET looks good and blood work CA 15-3 and CEA are now within normal range. I did not get the Tykerb rash. So far so good for me and hoping this holds for a while.
Love, Hope, Peace,
Carolyn
|
|
|
|
|
07-19-2007, 08:13 AM
|
#7
|
|
Senior Member
Join Date: Oct 2005
Posts: 3,519
|
I eat a pretty staunch, clean and fresh diet. I swear that it makes all the difference in the world with the diarrhea. Last week I did something I NEVER EVER do. I drank 2 Cokes and ate 1/2 a bag of bbq chips one afternoon. (was at a teenager's b-day party) and for the next 36 hours I was miserable with diarrhea. I took one immodium and immediately deferred to my BRAT diet and my normal eating habits (NO junk, no sodas) and I was back to normal in 36 hours. I learned a valuable lesson. I can't afford to stray from my clean livin!
__________________
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."
|
|
|
|
|
07-19-2007, 08:34 AM
|
#8
|
|
Senior Member
Join Date: Apr 2007
Location: LA LA Land
Posts: 1,607
|
change your diet
Hi Debbie,
I agree w/Brenda. I eat dairy free, gluten free and when I was on TY/X regime it helped A LOT. Also, I am using a bunch of daily supplements, including one called intestime. This is all under a doc's care at ucla. Plus acupuncture. After the first month, I could better handle the side effects - either no immodium or none till day 9 - pretty good. Also, my weight was stable on this diet. I am also on the thin side and don't need to loose any more (5-7" 120)
Make sure that you are taking the tykerb on an EMPTY stomach and are waiting ONE HOUR to eat.
Okay - gotta go - I am so nauseas right now from my monday drip...
hang in there. xo 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.
|
|
|
|
Posting Rules
|
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts
HTML code is Off
|
|
|
All times are GMT -7. The time now is 03:34 AM.
|
Linear Mode
