Herceptin / Tykerb Share your experiences or ask questions about Herceptin or Tykerb |
|
|
05-13-2009, 02:11 PM
|
#1
|
Senior Member
Join Date: Aug 2008
Posts: 327
|
Watery eyes and red eyelids-Herceptin?
Anyone have watery eyes and red (well, pink) eyelids and believe it is caused by Herceptin? Also, crusty stuff on eyelids esp. in the a.m.???
It's not an infection, had that checked out.
I'm not on anything else except Heceptin so I don't know what else to blame it on. I've never had anything like this before. Eye doctor said my tear ducts and oil glands are blocked, suggested warm, moist washcloth soaks 10 mins every day. My tear ducts aren't blocked, I can cry a bucket. Didn't work, so tried Gen Tears ointment or something like that. Seems to help...but my onc and pharmacist said that when looking through Herceptin side effects, watery eyes and irritated eyelids weren't a side effect. Huh?
What say those of you who are on Herceptin only?
Thanks,
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
|
|
|
05-13-2009, 05:20 PM
|
#2
|
Member
Join Date: Feb 2009
Posts: 23
|
I have the same problem but it started with the taxotere, which I was told was the culprit.
|
|
|
05-13-2009, 08:47 PM
|
#3
|
Senior Member
Join Date: Aug 2008
Posts: 327
|
Red eyelids
Hi DianaT,
Thanks for response. Would I still be having side effects from Taxotere/Carboplatin, because I finished those on March 12?
How darn long does it take for this crappola to leave the body anyway?!
Thanks
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
|
|
|
05-13-2009, 07:08 PM
|
#4
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
I am not experiencing the eye problems, but I will say that this Spring has been hellish hard on my allergies. I have never had a worse Spring season. With 4 more Herceptins to go, I am hoping my nails, and nasal problems abate with the cessation of treatment. I suppose I should not complain, but I must confess I cannot wait to be finished with the H and have my port removed! Now only 4.5 more years of hormone therapy!
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
05-13-2009, 08:49 PM
|
#5
|
Senior Member
Join Date: Aug 2008
Posts: 327
|
I know, Laurel. Seems never ending, doesn't it?
What are you doing for the nose problems?
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
|
|
|
05-13-2009, 08:57 PM
|
#6
|
Senior Member
Join Date: May 2006
Posts: 3,142
|
Watery eyes and red eyelids-Herceptin?
Taxanes (Taxotere is one of them.) can cause that. It is quite possible that other medicines can cause it. Warm compresses will soothe them and make them feel better. If it is an infection an eye doctor should be able to diagnose it. Good luck.
|
|
|
05-14-2009, 05:53 PM
|
#7
|
Senior Member
Join Date: May 2008
Location: Hershey, PA. Live The Sweet Life!
Posts: 2,005
|
Diannes,
Sorry, I didn't see your post. For some reason the threads I post on are not being emailed to me as others follow up or respond. Don't know if it is an Outlook problem or what. Danged annoying!
Anyway, my nose troubles. I was so irritated 2 weekends ago because the Wisteria was in bloom outside my bedroom window and didn't I go and sleep with the window open and breathe the pollen all night. When I awoke my throat was a scratchy, sore mess, and my nose was equally affronted. I used Zicam for 2 days which seemed to help me get a handle on it. I was slated for my nipple recon that Monday, so I was praying it would resolve. When they asked if I had a cough or sore throat, I could honestly answer the nurse that I did not. Well, in truth I still had the cough and some lingering lung congestion, but since I wasn't having gas I decided she did not need to know! Ha! Nothing was getting between me and my new nipples!
My son uses Zyrtec for his seasonal allergies with good effect. His eyes are a mess this year. Your symptoms sound like his. I think we may have hyper-sensitive immune systems while on Herceptin. Pollen and other allergens assault our immune response systems and they respond defensively. I am wondering if it is indeed a terrible year for allergies and in light of the Herceptin treatment, perhaps we are even more susceptible to the irritants in the air?
I suggest trying Zyrtec for your sinus problems after checking with your Onc. I doubt there will be a objection. Good luck, Diannes.
By the way, I read your post where you expressed the notion of ending your Herceptin treatment prematurely due to SEs. I encourage you to try to see if yours is not a seasonal allergy problem, perhaps worsened by Herceptin before you drop the program. Her2, as Brenda said, is not something to be trifled with. It is a killer and Herceptin is its number one enemy.
__________________
Smile On!
Laurel
Dx'd w/multifocal DCIS/IDS 3/08
7mm invasive component
Partial mast. 5/08
Stage 1b, ER 80%, PR 90%, HER-2 6.9 on FISH
0/5 nodes
4 AC, 4 TH finished 9/08
Herceptin every 3 weeks. Finished 7/09
Tamoxifen 10/08. Switched to Femara 8/09
Bilat SPM w/reconstruction 10/08
Clinical Trial w/Clondronate 12/08
Stopped Clondronate--too hard on my gizzard!
Switched back to Tamoxifen due to tendon pain from Femara
15 Years NED
I think I just might hang around awhile....
|
|
|
05-15-2009, 05:23 AM
|
#8
|
Senior Member
Join Date: Aug 2003
Location: Morris, IL
Posts: 3,507
|
Diane
As a long time Herceptin user, with and without other agents, I developed constant watery eyes...finally, after stents in my tearducts, and every OTC med available, i was prescribed Restasis Eye Drops for chronic dry eye...they have made an amazing difference....there are a few of us who have endedup with this from the herceptin we guess. See an eye Dr and have them order the Restatis and see if it 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
|
|
|
05-16-2009, 12:41 PM
|
#9
|
Senior Member
Join Date: Jun 2006
Location: San Antonio, TX
Posts: 2,357
|
My eyes did this on Taxol, Carboplatin and Herceptin. Stopped after a few months on just herceptin. ma
__________________
MA in TX.
Grateful for each and every day....
Diag. 12/05 at age 60
Stage II, Grade 3, 4.5 cm primary tumor
ER/PR- Her2 +3 strongly positive
Her2 by FISH 7.7 amplified
vascular invasion
Ki67 20% borderline
Jan - March '06 Taxotere/Adriamycin X 3 to try to shrink tumor - it grew
April '06 Rt Modified Radical Mas, 7 of 9 nodes positive
April - Aug. '06 Herceptin/Taxol/Carboplatin X 8 (dose dense)
Sept - Dec. '06 Navelbine/Herceptin x 8 (dose dense)
Radiation & Herceptin Jan. 22 - March 1, 2007
Finished Herceptin Dec. 10 '08! One extra year.
Port removed August, 2012.
8 1/2 years since diagnosis! 5 1/2 Years NED!
|
|
|
05-17-2009, 04:45 AM
|
#10
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
My eyes did this when I was just on herceptin, along with painful sinus problems and a crusty nose. Now on taxotere and herceptin it's back! So I am assuming it's mainly herceptin thats the culprit.
Ellie
|
|
|
07-09-2009, 04:53 PM
|
#11
|
Senior Member
Join Date: Aug 2008
Location: Central,New Jersey
Posts: 48
|
Herceptin - nose that constantly drips
Don't have any eye concerns but...my nose just runs, constantly. I may have my head down reading and I have to run to wipe my nose. My 97 year old grandmother had this when she was alive ... it's embarassing. It has to be the Herceptin. I finished taxol the end of November so it can't be that.
|
|
|
07-11-2009, 11:22 AM
|
#12
|
Senior Member
Join Date: Aug 2008
Posts: 327
|
Herceptin side effects
I have the drippy nose as well, sometimes very unexpected! I found that my eyes cleared up once the doctor found the cause: I had 4 ingrown eyelashes. Can't tell you how good it felt to get those little suckers pulled out. Eyelashes are growing in slowly. I look pretty ratty with my scraggly hair and patchy eyebrows and lashes but happy to be alive.
Diannes
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
|
|
|
07-15-2009, 04:55 AM
|
#13
|
Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
|
eye issues with Herceptin
Yes, I too have this - and have had 5 treatments of Herceptin but before the last 2 cycles - I was on chemo too and I didn't know if it might be the combination of the two... but now I know it has to be the herceptin. I also have had a allergic reaction every time to the therapy, but they have given me a bunch of cortizone and antihistamines - and it seems to help, but not the eye issue. My face and chest and upper body alway get real red for a day or so after - and then that passes. The eye thing hasn't --- is not fun, but now after reading a lot of posts on this site - I know its the Herceptin.
|
|
|
07-15-2009, 06:21 AM
|
#14
|
Member
Join Date: Jan 2009
Posts: 21
|
red crusty eyes
I had the same thing and I use a once prescription now over the counter allergy eye drop called Zaditor. I also find if my nasal symptoms are bad my eyes are worse so I use the Zyrtec, sudafed and a steroid nose spray when this happens. I am turning into a druggie!
|
|
|
07-15-2009, 03:02 PM
|
#15
|
Senior Member
Join Date: Dec 2005
Location: indianapolis, indiana
Posts: 1,544
|
wow i remember those days. my eyes watered so much i felt like i was crying alot of the time. it does go away eventually so hang in there!
__________________
dxd 9-04, lumpectomy,
st 1, gr 3, er,pr-, her2 +,
2 tac,33 rads,6 cmf
1 yr herceptin,
|
|
|
07-16-2009, 05:58 AM
|
#16
|
Member
Join Date: Jan 2009
Posts: 21
|
I guess I feel a bit duped. My oncologist and PA both told me there were rarely if ever any side effects with herceptin! They told me I would feel good!
|
|
|
07-20-2009, 04:16 PM
|
#17
|
Senior Member
Join Date: Aug 2008
Posts: 327
|
Herceptin's side effects your doctor may not mention
Glad to know there are lots of other women who have the red watery eyes. I mean, I'm not glad you have the red watery eyes.....you know what I mean! I have been told by: pharmacists, my onc and other doctors that Herceptin does not cause this. So, what is it then? It is the only thing I'm taking and I never had this before. I'm blaming it on Herceptin.
I also blame Herceptin for diarrhea, which I have daily and have had since I began Herceptin in Nov. 2008. My onc says to take Immodium. For almost a YEAR? Anyone else find Herceptin caused this? What did you do?
I have noticed a tinge of nausea after my herceptin treatment in June, for the first time. Anyone had that, and if so, what did you do for it? Premeds helpful? And I continue to be a bit queasy, not much appetite. I blamed it on the aromatase inhibitor, Arimidex and stopped it on Sunday after 3 weeks. I do feel better today. The nausea seemed to be worse when I began the AI in early July and nausea is a side effect. We are all different and I guess Herceptin and AI's being relatively new - how do they know how everyone will react when taking the two together? I am only weakly ER positive, anyway, which in Canada is rated +1.
Any stats on how much AI's can reduce recurrences if one is WEAKLY ER POSITIVE?
Thank you ladies.
__________________
Three years and 5 months NED
Dx: Aug 2008 right breast IDC with 50% of tumor DCIS, Stage II or IIA, tumor size: 2.1 cm
Grade 3
8/9 Richardson/Bloom test
ER+ weakly positive
Alred Score: 4 (suggesting I would strongly benefit from hormone therapy)
PR-,
HER2 positive +++
No vascular invasion
No lymph nodes involved
Surgery: Sept. 9, 2008 -Modified radical mastectomy, right breast. I chose to have a simple mastectomy on the left. Began Taxotere/Carboplatin/Herceptin November, 2008. Finished T/C March 2009. Finished #16 Herceptin Sept. 09. AI's and Tamoxifen made me sick. Began natural Tamoxifen which is Quercetin, I3C and a combo of other supplements. I am also a DES Daughter. There is now a link between DES exposure in utero and breast cancer!
|
|
|
07-21-2009, 01:03 AM
|
#18
|
Senior Member
Join Date: Jul 2009
Location: Sardegna, Italy
Posts: 362
|
Herceptin - eyes and side effects
I also have a bit of nausea the few days after Herceptin, but not the entire 21 days.
Eyes water .... all the time and the outside edges seem to be now almost always sore from all the tearing. UGH!
My Dr. here in Sardegna - blames the Herceptin.
I haven't had diarrhea, per say, but they keep saying that I can take a pill for constipation, well, I don't have that problem ... I have some diarrhea, but not super bad - and bowels are mostly always loose, so maybe this is the Herceptin also.... I thought it might be the chemo, but I stopped chemo 5 weeks ago.
So, hang in there... I have a heart altrasound again today, here my oncologist has had me do one every other treatment, so this will be my third one. Not sure if this is the same also in the US??? Thoughts ladies?
THANKS! Karen
|
|
|
07-21-2009, 09:30 AM
|
#19
|
Senior Member
Join Date: Sep 2005
Location: Naples FL
Posts: 1,744
|
Chiming in on red watery eyes...as I was only on Herceptin I blamed the eyes/sinus goo on that!!! My nose always felt like I has snorted water, that stingy-feeling. My onc. agreed. My eyes are still really sentitive to "stuff" in the air and get itchy and red. A lingering side effect! Just to remind me of the miracles of Herceptin!
__________________
Suzan W.
age 54 at diagnosis
5/05 suspicious mammogram-left breast
5/05 biopsy-invasive lobular carcinoma with LCIS,8mm tumor,stage 1 grade 2, ER+ PR+ Her2+++
6/14/05 bilateral mastectomy, node neg. all scans neg.
Oncotype DX-high risk
8/05-10/05 4 rounds A/C
10/05 -10/06 1 yr. herceptin
arimidex-5 years
2/14/08 started daily self administered injections..FORTEO for severe osteoporosis
7/28/09 BRCA 1 negative BRCA2 POSITIVE
8/17/09 prophylactic salpingo-oophorectomy
10/15/10 last FORTEOinjection
RECLAST infusion(ostoeporosis)
6/14/10 5 year cancerversary!
8/2010-18%increase in bone density!
no further treatments
Oncologist says, "Go do the Happy Dance"
I say,"What a long strange trip its been"
'One day at a time'
6-14-2015. 10 YEAR CANCERVERSARY!
7-16 to 9-16. Extensive (and expensive) dental work done to save teeth. Damage from osteoporosis and chemo and long term bisphosphonate use
6-14-16. 11 YEAR CANCERVERSARY!!
7-20-16 Prolia injection for severe osteoporosis
2 days later, massive hive outbreak. This led to an eventual dx of Chronic Ideopathic Urticaria, an auto-immune disease from HELL.
6-14-17 12 YEAR CANCERVERSARY!!
still suffering from CIU. 4 hospitilizations in the past year
as of today, 10-31-17 in remission from CIU and still, CANCER FREE!!!
6-14-18 13 YEAR CANCERVERSARY!! NED!!
|
|
|
07-21-2009, 01:22 PM
|
#20
|
Senior Member
Join Date: Feb 2009
Posts: 1,526
|
Hi Karen
Here in England heart scans are done 3 monthly whilst on herceptin. There are moves now I hear to extend this interval to 4 months. hope this helps
Ellie
|
|
|
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 07:10 AM.
|