| Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
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04-21-2007, 08:32 PM
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#1
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Min or no side effects from Herceptin?
I was wondering if there is anyone out there experiencing minimal or no significant side effects from Herceptin?
I would appreciate your feedback.
Thank you.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-21-2007, 08:43 PM
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#2
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Harrie, I just recently finished my yr of herceptin, but I can tell you when I *first* started on herceptin I did notice my stomach would bother me a bit. (But not bad enough to keep me from eating.) Actually it is hardly worth mentioning...that's how little it bothered me. The main thing I would notice is being extremely tired that day of herceptin & about two days afterwards. Plus I did have quite a few headaches due to herceptin.
But strangely enough towards the end of my year I had absolutely no problems at all. It got to the point that my body was so use to it I couldn't even tell I had anything. I would swear the bag was full of water. lol That's how normal I felt. No side affects of any kind. I wasn't even tired like I use to always be. I'd go for my herceptin and feel great.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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04-21-2007, 09:07 PM
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#3
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Chelee,
I am so happy to hear of your great tolerance to Herceptin. I have been reading on other threads of women who are reporting many, many significant side effects. I have been on herceptin since end of 1/07 and so far I have some side effects, but I couldn't tell you if it was from my TCH chemo or the herceptin. And the side effects I am having are very manageable. I am keeping my wt down, do notice some tiredness but nothing to keep me from excercising after that week following chemo. I have my last chemo in 3 wks and it will be interesting to see how I feel with just the herceptin. Before getting any treatments, I remember my doctors telling me that herceptin is a very tolerable treatment with minimal if any side effects and so that is what I expected. I was so surprise to read about some of the problems other women are experiencing and in the back of my mind I was wondering if i will also later on.
Thanks for responding to my inquiry.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-21-2007, 10:23 PM
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#4
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Chelee,
So far, when I go for my herceptin I feel great also! I leave the facility, go grocery shopping, clean house, maybe go to yoga later or walking. "maybe" a few days later I might feel something, like vague tiredness, but not really sure of that. It just gave me a startle when I read about others getting such bad side effects.
It was great to hear how well you are doing.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-21-2007, 10:59 PM
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#5
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Senior Member
Join Date: Oct 2005
Posts: 3,519
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Harrie -
I have been on Herceptin for 20 months. For about 7 of those months I was on Herceptin by itself (without additional chemo). I have to say that I have had such an easy time with it. Even in conjunction with chemo. Most of my symptoms (and there aren't many) are chemo based for sure. All I have really noticed with Herc is drippy nose and watery-ier eyes (I have always had watery eyes, allergy sensitive).
Brenda
__________________
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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04-22-2007, 12:06 AM
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#6
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Senior Member
Join Date: Feb 2006
Location: Southern, CA
Posts: 2,511
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Harrie, There are many women that do have side affects from herceptin...but I find more don't then do. (Or so it seems that way to me.) I did TCH also and I know when I was doing all three drugs I couldn't tell which one did what for sure. But I can tell you once I was off the taxotere and carb...herceptin was a piece of cake. I did forget to mention as Brenda said...I did have a runny nose most the time. It gets old to say the least. But again, towards the end of my year even that quit.  I think you will find herceptin is like being on pretty much nothing. Its a breeze after you get through your chemo.
It sounds like you are tolerating herceptin rather well already...so I wouldn't worry to much about all the posts you read about women having side affects. We all react so different to these drugs. I can pretty much bet you it will be a breeze for you too. I think you will find being tired is one of the worse side affects the day of herceptin. Other then that maybe the darned runny nose & headache off and on. I am so serious...towards the last 5 months of herceptin...I felt no side affects. It was great. Good luck to you, you will do fine.
Chelee
__________________
DX: 12-20-05 - Stage IIIA, Her2/Neu, 3+++,Er & Pr weakly positive, 5 of 16 pos nodes.
Rt. MRM on 1-3-06 -- No Rads due to compromised lungs.
Chemo started 2-7-06 -- TCH - - Finished 6-12-06
Finished yr of wkly herceptin 3-19-07
3-15-07 Lt side prophylactic simple mastectomy. -- Ooph 4-05-07
9-21-09 PET/CT "Recurrence" to Rt. axllia, Rt. femur, ilium. Possible Sacrum & liver? Now stage IV.
9-28-09 Loading dose of Herceptin & started Zometa
9-29-09 Power Port Placement
10-24-09 Mass 6.4 x 4.7 cm on Rt. femur head.
11-19-09 RT. Femur surgery - Rod placed
12-7-09 Navelbine added to Herceptin/Zometa.
3-23-10 Ten days of rads to RT femur. Completed.
4-05-10 Quit Navelbine--Herceptin/Zometa alone.
5-4-10 Appt. with Dr. Slamon to see what is next? Waiting on FISH results from femur biopsy.
Results to FISH was unsuccessful--this happens less then 2% of the time.
7-7-10 Recurrence to RT axilla again. Back to UCLA for options.
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04-24-2007, 09:29 AM
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#8
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Senior Member
Join Date: Jul 2006
Location: Shingle Springs, CA - near Sacramento
Posts: 295
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Nada
Dear Harrie,
I have to say that I am having absolutely no effects from Herceptin. It would be fairly easy to pin alot of things on it if I didn't already pay attention to all the little health glitches I had before herceptin, but having done that, I am experiencing no new symptoms whatsoever. Yay!
Have a great day!
Donna
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04-24-2007, 10:31 AM
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#9
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Member
Join Date: Apr 2007
Posts: 9
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Love my Herceptin!!!!
I have been getting Herceptin weekly since 12/05/06.The only side effects are fatigue and nosebleeds.I have tx on Wednesday and am tired until Friday.Small price to pay for this miracle drug.
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04-24-2007, 03:38 PM
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#10
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Member
Join Date: Apr 2007
Location: Mountain View, California
Posts: 8
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side effects
Hi Harri,
I was on Herceptin and Navelbine for 2 1/2 years and my only side effect was feeling a little fatigued at the end of each cycle, but not so fatigued that I couldn't still play ice hockey.
-Susie
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04-24-2007, 04:24 PM
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#11
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Senior Member
Join Date: Mar 2007
Location: Hilo, Hawaii
Posts: 1,867
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Thank you everyone!!! Very, very encouraging!!!! SO GLAD I started this thread. I really needed to hear of these positive kinds of experiences.
Harrie
__________________
*** MARYANNE *** aka HARRIECANARIE
1993: right side DCIS, lumpectomy, rads
1999: left side DCIS, lumpectomy, rads, tamoxifen
2006:
BRCA 2 positive
Stage I, invasive DCIS (6mm x 5mm)
Grade: intermediate
sentinal node biopsy: neg
HER2/neu amplified 4.7
ER+/PR+
TOPO II neg
Oncotype dx 20
Bilat mastectomy with DIEP flap reconstruction
oophorectomy
2007:
6 cycles TCH (taxotere, carboplatin, herceptin)
finished 1 yr herceptin 05/07
Arimidex, stopped after almost 1 yr
Femara
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04-24-2007, 04:51 PM
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#12
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Senior Member
Join Date: Aug 2006
Posts: 492
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Harrie,
I have been on herceptin for over a year now. My only symptoms are weird smelling urine for 24 hours (I don't know why this bothers me the most, but it does), some fatigue the afternoon of the infusion, occasional and unpredictable watery nose (it does make life entertaining). Things that may be herceptin, but could also be arimidex- crappy nails and insomnia.
All and all not a bad deal!
__________________
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
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04-24-2007, 05:38 PM
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#13
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Senior Member
Join Date: Aug 2006
Location: Sheboygan, WI
Posts: 2,582
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Hi Harrie,
I experienced very little in the way of "side effects" from herceptin. The side effects I did experience are hardly worth mentioning. I did have some joint aches, breathlessness at times (mainly the 1st week after an infusion) a bit of gastroinstestinal issues (very minimal effects to that area as well). But really............overall.............I felt really good. More bloated and more trouble getting weight off (lost 17 pounds since herceptin ended in Oct. 06) and most of that came off with in the first couple months since being off herceptin.
Honestly, I didn't find any of it that bad. I don't know why. To be honest with you, I hardly remember much of my chemo. God's way of protecting us, possibly......I'm not sure..........but for the most part I got through it all quite well and feel blessed that I did.
Life is good...................
Mary Jo
__________________
"Be still and know that I am God." Psalm 46:10
Dx. 6/24/05 age 45 Right Breast IDC ER/PR. Neg., - Her2+++ RB Mast. - 7/28/05 - 4 cm. tumor Margins clear - 1 microscopic cell 1 sent. node No Vasucular Invasion 4 DD A/C - 4 DD Taxol & Herceptin 1 full year of Herceptin received every 3 weeks 28 rads prophylactic Mast. 3/2/06
17 Years NED
<>< Romans 8:28
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05-01-2007, 05:39 AM
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#14
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Member
Join Date: Apr 2007
Posts: 16
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Harrie, I just had my 4th Herceptin one week after my last Taxol. So far Herc does not seem to bother me too much. When I had it with the Taxols I got Benadryl but the two times I've had Herc alone, the Herc was given alone. The first sole infusion, I had a rash on my shins but it went away by morning. This time I developed a rash on my hands, but I took Benadryl myself at home and it was gone overnight. I did notice a mild drippy nose, and I was pretty fatigued in the afternoon, but otherwise I'm fine and expect to do well. Compared to AC and Taxol, it has got to be a walk in the park! BTW, I also appreciate this thread as the other one seemed so dire. It's great to know there are plenty of us who tolerate the drug well. - Skye
__________________
2.1 cm stage 2A, dx Nov. 06, lumpectomy Dec. 06, clear margins and nodes, ER+PR-HER2+(9), 4 AC/cytoxin, 4 taxol, starting Herceptin, rads May-June 07
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