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Old 02-13-2011, 01:02 PM   #541
NanaJoni
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I'm in my 9th month of Herceptin - Herceptin only since August 2010. I have to say I don't have much in the way of side effects - but a few annoying things: my nails have gotten extremely thin and they peel and split. I keep a nail strengthener on them and get regular manicures to keep the cuticles neat (it's also a mood booster to get pampered). Since I stopped chemo and went to Herceptin only, my eyelashes have fallen out completely 3 times. Can't do much about that but they come back nice and thick so I won't complain. I usually feel a little tired during the week after tx but napping fixes that nicely. I have started having some really serious problems with gastro/diarrhea though. This started about two months ago. Of course, my onc says it's not the Herceptin but the only other drug I'm on is warfarin which could be part of the problem. The nurse practitioner in my onc's office was very helpful. She thinks my system (stomach, intestines, colon) have just been bombarded by too many chemicals, antiobiotics and other drugs which resulted in all the good and bad bacteria have been whacked. So she put me on a probiotic, an anti-spasmodic and a special diet. I also had a colonoscopy which was good (I don't have to have another one of those for 8 yrs). So not sure what's up - just trying to deal with each thing as it comes up. I really feel better in many ways than I did a year ago before the bc. I've been feeling some dread and sadness as the one-year anniversary of finding a lump and getting a cancer diagnosis is approaching. Don't know whether I'll hide in bed on those two days in March or maybe do a total spa day or lunch with friends. I'm trying to plan on doing the more upbeat positive activities but sometimes things just crash without warning. Just taking it a day at a time.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 02-23-2011, 12:51 AM   #542
kklouisiana
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

The only side effect I have may not be femara or herceptin but my ears drain constantly. Periodically, like tonight for instance, I woke up and my left ear is bleeding bright red blood. Could this be a side effect?
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Diag 4/1/10
rt breast 2.4 cm grade III infiltrating ductal w/pos margins
sentinel nodes rt benign
tumor pT2, pNO, pMX
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began adria/cytoxan June 9 x 3wks x 4 then taxotere/herceptin 3wks x 4
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Old 02-23-2011, 09:35 AM   #543
NanaJoni
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

KK - I've never heard of any bleeding being a side effect of Herceptin. I would advise you to call your oncologist ASAP and report this to him. The only side effects I have from Herceptin are some mild fatigue in the first few days after a treatment and a constantly runny nose. I take Zyrtec for the nose dripping and it ususally takes care of it.
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Joni -64 yrs old -
3/01/10: found lump in rt.breast
3/12/10: mammogram/ultrasnd/biopsy-invasive bc & DCIS; 2 tumors (2cm er-/pr-/HER2-& 1.8 cm er-/pr-/HER2+); grade 3;poorly differentiated
3/24/10:sent.node biopsy clear
3/31/10:bi-lateral mx.;atypical ductal hyperplasia-lft side
4/21/10:wound revision-infection/scarring 4/28/10:seromas both sides
5/21/10:port installed,TCH chemo (6 x 3 wks); Herc,-1yr; 33 rad tx after chemo
07/2010: port not working-2nd port didnt'work;3rd port opposite side.
07/2010: 2 weeks after 3rd port surgery, threw 3 pulm. emboli-IVC filter installed; warfarin
08/2010: hospitalizations w/3 of chemos; decision to stop after 4th-on to radiation in Oct 2010;Herc cont.
12/03/2010 - finished 33 rads Hooray!! cont. Herc. every 3 wks
4/2011 - pneumonia ??? Nope-radiation pneumonitis. No more Herc.
5/2011 - NED!!! port out.
8/2011 - clean PET & CT scans.Still NED
7/2012 - Still NED/very blessed.
2/2013 - 6 mos checkup-all clear. CA2729 down frm 13 to 11.
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Old 02-23-2011, 09:38 AM   #544
kklouisiana
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Thanks, i was hoping it was a side effect, but have an appt with ENT tomorrow morning. Other than this, I have had excellent blood tests during chemo and herceptin and no side effects.
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Diag 4/1/10
rt breast 2.4 cm grade III infiltrating ductal w/pos margins
sentinel nodes rt benign
tumor pT2, pNO, pMX
PQRI: 3260
began adria/cytoxan June 9 x 3wks x 4 then taxotere/herceptin 3wks x 4
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Old 02-23-2011, 09:46 AM   #545
kklouisiana
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

my diagnosis was April 1, 2010. i haven't even considered it an anniversary. i do have very thin and ridged nails on my fingers, though. my nails used to be very strong and grew way too fast. i take pro-biotics and they are great!! Glad you are taking them, too.
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Diag 4/1/10
rt breast 2.4 cm grade III infiltrating ductal w/pos margins
sentinel nodes rt benign
tumor pT2, pNO, pMX
PQRI: 3260
began adria/cytoxan June 9 x 3wks x 4 then taxotere/herceptin 3wks x 4
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Old 03-08-2011, 10:58 AM   #546
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Headache. I take it over one hour. Still get a little headache that lasts.
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Old 03-08-2011, 11:30 PM   #547
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

For some reason the herceptin only infusions aggravate my numbness left over from chemo. I have been reassured that herceptin isn't related to numbness and yet this is the second time it has happened. If anyone has any ideas I would appreciate any advice.
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Old 03-26-2011, 10:31 AM   #548
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I have never had chemo. and am currently on Herceptin every 3 weeks for one year. Here are some side effects I believe are related to the Herceptin:
. drippy nose with crusty stuff - very sore
. vaginal dryness , itchy,burning
. mouth sores - cheeks and just inside lips
. chemical smell coming through skin for about 24 hours .
. same chemical smell in urine for about 24 hours

Anybody else experience this?


Laura - stage 1 , no lymph nodes, hormone positive, HER2 positive
surgery (lumpectomy) , mammosite radiation, taking Arimidex and Herceptin infustions every 3 weeks.
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Old 03-26-2011, 10:59 AM   #549
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Sounds like very 'typical' Herceptin effect. I was having very bad mouth sores and was prescribed a mouth wash that contained maalox, lydocaine, and benedryl (do a 'mouth sore' search on this site and you will find several threads on the subject)

There's a non-hormone vaginal moisturizer called 'Replense' that's been recommended by many on different support groups and I've found effective in relieving the irritation.

And I remember the metalic taste on my tongue...

Hang in there. Remember to eat well and get plenty of rest...
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7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
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Old 03-26-2011, 03:04 PM   #550
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I was on Herceptin for 4 years. My side effects were dry, red eyes, runny nose, brittle nails, headache for several days after Herceptin and red, hot face several times a day. It was all worth it as it saved my life. Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 04-17-2011, 05:26 PM   #551
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I have been on herceptin now for 3 months... infusion every 3 weeks. I have not had any chemo. My side effects are constant runny nose, acne after my infusions and severely irregular periods. My periods are coming every 2 to 3 weeks. Before I started herceptin I woud get my period every 28 days like clock work. I have asked my oncologist if the irregular/ more frequent periods were "normal" but he told me it was not a known side effect. Any other women experience this?

diagnosed at age 33 (Sept 2010)
DCIS and 3.0mm invasive tumor
ER-, PR-, Her2+++
opted for bi-lateral mast. with silicone implants
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Old 04-19-2011, 10:44 AM   #552
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Me too me too. Gosh I feel so relieved that other people experience these symptoms. Joint aches, lower energy levels, and my scalp hurts sometimes. Oh and flaky nails. Hey ho better than being dead eh. But my chemo nurses continue to state that there are no side fx from Herceptin.
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Old 05-05-2011, 01:17 PM   #553
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I get Herceptin every 3 wks, 8 to go. The only side effects I'm having are runny nose, brittle nails, feel a little tired and lower half achey, but that may be due to the Tamoxifen, which I started 3/20/10.

Diagnosed 6/17/10 at the age of 40
Stage 2A
Ductal and lobular
Two 2cm tumours
Double Mast. 7/22/10
ER PR + HER 2 +
treatment AC T 8/10-1/11
Herceptin every 3 wks through Oct '11
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Old 05-14-2011, 11:26 AM   #554
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I am new to this site, but far along in the treatment phase. I was particularly interested in this section, because of the inquiry on side effects, and how little there is out there. The PR out there, is very little "side effects" with Herceptin. I am 58y.o., in july diagnosed with two tumors (one triple negative; other hormone negative, HER2+; Stage II, 1 node with micro met; 3 cm. Treatment typical: mastectomy (3/31 completed second phase of reconstruction, tissue expander removed; implant in); Chemo: ACx4; Taxol/Herceptin x 12 (weekly) currently Herceptin q 3 weeks (Until November). I have decided to discontinue Hercpetin because of the marked "cognitive impairment" side effects. I have been off Taxol now for 4 months, and while I feel better in every way, emotionally stable, fatigue improved, energy improved, peripheral neurapathy gone, (toenails-still yuckey); hair growing in, eyebrows and eyelashes back, the "cognitive impairment" continues, and in fact getting worse. I feel the impairment side effect post-Herceptin severely for a week. But I have noticed, my better weeks are worsening as well. My ability to follow meetings, power point presentation, complexed decision making,calculating numbers, public speaking very difficult. I went from a confident executive to a ......not sure. Similar to a stroke patient, having to relearn everything. I see my analytical and intellectual acumen at 50% post treatment, and 65-70% during my good times. The quality of life issue is major. My career could be in jeopardy. I will have been on Herceptin for 6 months. I feel okay about my decision, since there are not studies out there showing a difference between one year and six months (there are studies going on now looking at six month regimens for early H2+ breast cancer). The one year duration is the standard, only because the clinical trials were done for one year. I'm in the medical field, so my decision is based on current evidence, and alot of research!! My onc had agreed to stop at 9 months if this continued, but at 6 months--I need to stop now.

I'd like to hear more about those with "cognitive impairment" issues related to Herceptin only. I know about the the AC and Taxol CI affects, and other adjuvent therapies, but what about Herceptin? I am tired of people calling this "chemobrain" as if this is a small price to pay for treatment. This is truly a real diagnosis of chemotherapy-induced cognitive impairment. Thanks!!!
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Old 05-14-2011, 03:38 PM   #555
Jackie07
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Matria,

The molecule of Herceptin is usually considered too big to cross the blood-brain barrier in our brain (that's why 'Tykerb' is often used for brain mets - because its molecure is much smaller.) But new studies do show effectiveness of Herceptin even for brain mets. Chemobrain is, most likely just like the name suggested, caused by chemo agents - especially anthracyclines such as cytoxan, epirubicin, ...etc.

It takes a while for the problems to surface. Most likely the damage caused by chemotherapy did not reveal itself until after you had begun Herceptin-only infusion.

There are studies (at least one British study came to mind) showing 9 (or 12?) weeks woth of Herceptin achieves 98% the effect of the one year schedule. Breast cancer, especially Her2 breast cancer, has a bad reputation of recurring - either in the same area or the other breast, or even sometimes in other organs. It is prudent for us to remain vigilant.

Researchers are paying more and more attention to details about the cognitive decline related to breast cancer treatment. For example, the following abstract focuses on the very beginning of our cancer journey. It concludes that diagnosis and surgery do not have much effect on the cognitive decline:

Acta Oncol. 2011 May 9. [Epub ahead of print]
The effects of breast cancer diagnosis and surgery on cognitive functions.

Hedayati E, Schedin A, Nyman H, Alinaghizadeh H, Albertsson M.
Source

Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.

Abstract

Abstract Background.

Women with breast cancer (BC) report cognitive impairment. Receiving a BC diagnosis may have a negative psychological impact. We sought to determine whether a diagnosis of BC and subsequent surgical treatment reduced cognitive function.

Material and methods. We recruited women, who had a positive radiographic finding, consecutively from the mammography screening program at Stockholm South General Hospital.

All subjects completed the Headminder Web-based neuropsychological battery Cognitive Stability Index (CSI) for response speed, processing speed, memory, and attention at enrolment (T1, Baseline). CSI was administered again, after BC was ruled out, or after sector resection or mastectomy, if BC was confirmed by cytology or biopsy (T2, Retest). Results and conclusion. Of the 148 women approached, 146 were enrolled; 69 were healthy and 77 had BC.

Comparison between groups at baseline, according to independent t-test, showed significant differences in response speed and processing speed. Cognitive abilities did not decline in either group on any of the measured domains.

Our results suggest that a diagnosis of BC and subsequent surgery is not associated with substantial cognitive decline at retest. However, the lack of improvement in attention at retest among BC patients may be suggestive of a decline.



Ps. Idelle Davidson, one of our members on this Board, has written (with Dr. Dan Silverman) a very nice book entitled "Your brain after chemo". There are quite a few threads on the topic of chemobrain and/or 'cognitive decline' here on the Board. You can use the 'search' window on top to look them up.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

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Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
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hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe

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Old 05-21-2011, 11:58 AM   #556
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

I was diagnosed with Stage IV breast cancer in 2006 with mets to liver. I have been taking Herceptin since May of 2006. I really did not have any bad side effects until this year - I took it once a week and usually just had a headache on the day of treatment and some fatigue. I had been having some bad shoulder and neck pain which is irritated by the use of the port-a-cath so they suggested switching me to the once every 3 week infusion. This really messed things up. I started feeling very tired and each successive treatment my bone and joint pain started getting really bad - it got to the point that my knee would feel like it was going to give out and I could not walk on it the pain was so bad(I am only 35 years old so I should be capable of walking around but I was having to use a cane.) I also had hip and ankle pain on that same side as well as upper back pain. I noticed it would start to lessen as I was nearing the end of the cycle getting ready for the next dose and as soon as I got the next dose it would get really bad again. I called the onc. and they switched me back to the weekly which I have been doing for about 5 weeks now. The symptoms are less severe than the 3 week dose but the knee, ankle and back pain has not gone away it is just not as severe - it does get worse on treatment day and slowly lessens as the week goes by but it is really starting to wear on me. I am thankful for this drug as I would probably be dead without it but taking this drug for over 5 years now is starting to take it's toll. The onc. says I will take it until it stops working or I have heart issues but I am thinking on asking if I can have a short break and see if that helps - I don't know if he will do it or not but a girl can hope right?
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Old 05-21-2011, 05:21 PM   #557
Mary L
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Red face Re: Please post your two cents on Herceptin "side effects" real or perceived!

Hello, my name is Mary and Herceptin saved my life. I was diag. with Inflammatory Breast Cancer stage IIIb and given a 28% chance of surviving 2 years. Herceptin saved my life and this Oct 2011 I will be an 8 year survivor. Yes, I had side effects, quite a few of them and most of them are going away. The alternative for me was to die. I am so thankful for Herceptin and if my cancer does return, I know Herceptin will be there for me. I wish you the very best. I just wanted to tell you my story with Herceptin. Best Wishes, Mary L
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Mary L from PA Diag: Oct 2003 w/6mm mass, IDC grade III ductal carcinoma in-situ, IBC stage IIIB. tx A/C followed by Taxotere(only able to have 2 tx, allergic), mastectomy, 3 0ut of 7 positive nodes. 35 rads. Recurrence 9 months later, skin mets to mastectomy site. Tx Carboplatin/Herceptin. Stayed on Herceptin almost 5 years, had 3 more recurrences when I had to stop Herceptin due to my ejection fraction getting too low. Herceptin stopped and ned 3 years in Oct. 2010.
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Old 05-25-2011, 07:21 AM   #558
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Post Re: Please post your two cents on Herceptin "side effects" real or perceived!

I get Herceptin every 3 weeks. I too have a runny nose, nice to know it's not just me. Had chemo TCH protocol so have been on Herceptin since Aug of 2010, started Tamxifin in March after radiation. Have not had any fatigue or other side effects, my finger nails fell off from chemo but have grown back and I take calcium and that seems to help keep them from breaking so much. I exercise alot to include racing mountain bikes so I haven't felt any fatigue. Do get chemical smell in urine for a couple of days after treatment.

Diagnosis 6/8/10 DCIS, 7/26/10 HER2+ stage I at age 41
(B) mastectomy w reconstruction but (L) got infected and had to take out expander, will do recon later in year. TCH protocol for chemo went well with no complications.
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Old 05-28-2011, 06:35 AM   #559
Raquel
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Red face Re: Please post your two cents on Herceptin "side effects" real or perceived!

Wow! T hought it was just me but I've had many of the same side effects:eyelahes fell out,periods every couple weeks,fatigue,runny nose,vaginal dryness, weight gain! Of course my Dr said they are not side effects of the herceptin! Glad to know it's not just me!I've been on the stuff 4 years now!
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Old 08-04-2011, 02:12 AM   #560
Jackie07
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Re: Please post your two cents on Herceptin "side effects" real or perceived!

Looks like this new thread
http://her2support.org/vbulletin/sho...302#post254302
(Herceptin and leg and joint pains)
would bridge the gap of the past two months here.
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http://www.kevinmd.com/blog/2011/06/doctors-letter-patient-newly-diagnosed-cancer.html
http://www.asco.org/ASCOv2/MultiMedi...=114&trackID=2

NICU 4.4 LB
Erythema Nodosum 85
Life-long Central Neurocytoma 4x5x6.5 cm 23 hrs 62090 semi-coma 10 d PT OT ST 30 d
3 Infertility tmts 99 > 3 u. fibroids > Pills
CN 3 GKRS 52301
IDC 1.2 cm Her2 +++ ER 5% R. Lmptmy SLNB+1 71703 6 FEC 33 R Tamoxifen
Recc IIB 2.5 cm Bi-L Mast 61407 2/9 nds PET
6 TCH Cellulitis - Lymphedema - compression sleeve & glove
H w x 4 MUGA 51 D, J 49 M
Diastasis recti
Tamoxifen B. scan
Irrtbl bowel 1'09
Colonoscopy 313
BRCA1 V1247I
hptc hemangioma
Vertigo
GI - > yogurt
hysterectomy/oophorectomy 011410
Exemestane 25 mg tab 102912 ~ 101016 stopped due to r. hip/l.thigh pain after long walk
DEXA 1/13
1-2016 lesions in liver largest 9mm & 1.3 cm onco. says not cancer.
3-11 Appendectomy - visually O.K., a lot of puss. Final path result - not cancer.
Start Vitamin D3 and Calcium supplement (600mg x2)
10-10 Stopped Exemestane due to r. hip/l.thigh pain OKed by Onco 11-08-2016
7-23-2018 9 mm groundglass nodule within the right lower lobe with indolent behavior. Due to possible adenocarcinoma, Recommend annual surveilence.
7-10-2019 CT to check lung nodule.
1-10-2020 8mm stable nodule on R Lung, two 6mm new ones on L Lung, a possible lymph node involvement in inter fissule.
"I WANT TO BE AN OUTRAGEOUS OLD WOMAN WHO NEVER GETS CALLED AN OLD LADY. I WANT TO GET SHARP EDGED & EARTH COLORED, TILL I FADE AWAY FROM PURE JOY." Irene from Tampa

Advocacy is a passion .. not a pastime - Joe
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