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Old 04-30-2015, 11:45 AM   #1
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Location: Misty woods of WA State
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Perjeta/Herceptin early BC? Share your experience.

Opportunity to Share Your HER2+ Experience

Genentech is seeking women with HER2+ early breast cancer who have experience with Perjeta or Herceptin who would be interested in participating in a patient advisory board this summer.

If you would like to learn more about this opportunity, please email Beth at contact@PHPerspectives.com or call toll-free (855) 971-0493.
"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 04-30-2015, 02:34 PM   #2
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Re: Perjeta/Herceptin early BC? Share your experience.

I participated in this last fall. It's a wonderful opportunity if you can do it!
5/15/14 Dx IDC, right breast, 2 cm with 3 cm lymph node ER/PR- Her2+

6/11/14 Taxol / Herceptin / Perjeta

9/17/14 Lumpectomy, axillary lymph node dissection 3/9 nodes showed previous involvement but all clear due to THP!!

9/24/14 NED

10/8/14 AC x 4

12/16/14 rads x 20 WBRT only
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Old 05-11-2015, 02:24 PM   #3
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Re: Perjeta/Herceptin early BC? Share your experience.


I just had my first TCHP infusion on May 7th and I have been having major side effects. The biggest ones are difficulty breathing and bone pain from the Lunesta. I have had shortness of breath and feel like my lungs are being compressed. I have not been able to sleep for 5 days and the fevers come and go. Day 5 I now have major diarrhea.

I have never felt so bad in my life. I normally feel very good, but this first treatment took something out of me.

Q. Does it get better or worse? This first infusion feels awful all around.
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Old 05-11-2015, 07:39 PM   #4
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Re: Perjeta/Herceptin early BC? Share your experience.

The breathing situation should be reported immediately! Just finished my #6 TCHP on May 7th and recovering. For me, the first three days post treatment are not bad but days four through ten are rough. Yep, diarrhea is a part of it but there should be no fever. Again, you need to call your doctor about any fever. My first one was probably the worst because I did not know what to expect or how to treat myself.
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Old 05-11-2015, 07:50 PM   #5
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Re: Perjeta/Herceptin early BC? Share your experience.

I reported it the day after my first treatment. The nurse said it was from the steroids. I'm on day 5 and my stomach is cramping with diarrhea. What side effects did you have from day 5 on?
I feel flushing off and on. Nurse said it was the steroids.

I will see my doctor on Thursday. I'm concerned about the shortness of breath.

Thanks for your concern!
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Old 05-11-2015, 08:18 PM   #6
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Re: Perjeta/Herceptin early BC? Share your experience.

My stomach has not liked the chemo either so they put me on 40mg of Prilosec each morning. It certainly cured the acid reflux for me and calmed the stomach ache. When they cut down on the steroids for me, it caused too much nausea so we kept up the steroids. Day six through eight are about the same for me; fatigue is at its worst, no appetite, have to literally force myself to drink fluids. I started going in once or twice each treatment for IV fluids and that really helped out. Don't wait three more days on shortness of breath; just go in and see someone. Should be no shortness of breath unless you are exerting yourself; certainly not if you are at rest.
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Old 05-11-2015, 08:22 PM   #7
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Re: Perjeta/Herceptin early BC? Share your experience.

I can see we're all struggling with SE in our own ways. I'm sorry we all have to go through this.
Yes i will call my doctor. Thanks for advise!
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Old 05-12-2015, 08:31 PM   #8
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Re: Perjeta/Herceptin early BC? Share your experience.

Day 6 and feeling more nauseated and major sores in mouth n vagina area. Running fevers off n on. I called my doc n will see him Thursday. My port stitches come out tomorrow w the breast surgeon. I've been taking Imodium for diarrhea but wondering if its better to just let all the toxins come out. Feel like im flooded with poison. I've been taking 200 mg Advil but trying tylanol 325 mg tonight for fever. For a moment i have an appetite but when its time to eat i feel otherwise. I've been sucking on ftozen cherries for cooling down the soreness. Drinking as much water as i can. Even water doesn't agree.

I feel like a mess and feel like if it's not one SE it's another. Feel like im only holding on to my spirit n soul.
I catch myself falling into depression. I've been forcing myself to take walks..but then i feel tired.

Please share any suggestions...i can't imagine going for round 2 in this condition.

I don't want to sound negative...but i am suffering. I am otherwise a happy n positive soul. I don't understand why any of us have to go through all this. My Mother died of ovarian stage 4 cancer and i cared for her 3 years. Her chemo experience was so depressing. I have barely healed from her passing n now i am dealing w cancer.

THANK YOU ladies for all who have reached out to me. I'm fortunate to have a place where the right people are listening. I hope I can get to that point where I can encourage others who will follow after me.

I wish love n kindness for your couage n support. I wish all of you happiness and a long life.

Hugs to all for listening n your empathy!
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Old 05-12-2015, 09:38 PM   #9
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Re: Perjeta/Herceptin early BC? Share your experience.

Keep knowing that the treatment you are receiving is in fact killing the cancer in your body and the end result will be worth the pain. You seem to be having a very strong reaction but I do remember my first treatment being the worst one too. Do not allow yourself to become dehydrated which is very easy to do. That will only make the side effects worse. Make Jello with fruit in it, suck on popsicles, drink ice cream floats and milkshakes, sip on lemon/honey tea, and rinse your mouth at least five times a day in a mixture of salt and baking soda for the mouth sores. I found eating watermelon worked great for me. Keep up the Imodium, very important to retain as much fluid as possible.
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Old 07-24-2015, 10:35 PM   #10
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Re: Perjeta/Herceptin early BC? Share your experience.

Report to your doctor all you symptoms. They should have a 24 he line you can call. I know with my first chemo. My white blood count went extremely low. They said I had neutropenia. And that I reed a shot called neutrolasta. They said they were giving me neutrolasta injection along with claritin. I slowly felt better.
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Old 07-24-2015, 10:38 PM   #11
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Re: Perjeta/Herceptin early BC? Share your experience.

That injection of neutralasta raises your white blood cell count....
Each time I had chemo. Next day I would go in r my neutrolasta shot.
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Old 08-04-2015, 04:53 AM   #12
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Re: Perjeta/Herceptin early BC? Share your experience.

Hi all, brand new here. I will work on a signature asap. I was diagnosed in april with stage 3a Her2+ lump on right breast. 1 node. I have just completed my 5th of 6 round on TCHP. My question is, what did your tumor feel like during this? The hard lump went away pretty quickly in mine, but now I'm feeling a "fullness" there that is worrisome. I don't feel any edges, but it is definitely feeling harder than the other side now. I have also felt a small lump on my left side, but there was nothing on MRI when I started this. I'm worried I need another pathology report done. Anyone get another biopsy done during chemo? My onc said the way they check is by feel...well I'm feeling something, so now what? Thanks!
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Old 08-04-2015, 12:45 PM   #13
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Re: Perjeta/Herceptin early BC? Share your experience.

I had a lump both in my breast and in the armpit node. The lump in my breast disappeared with the TCHP therapy and the one in the lymph node was reduced but we could always feel it. Surgery was in May and the pathology report was good but not perfect. Maybe a simple ultra sound could help you? I was diagnosed as Stage IIb, ER/PR negative, Her2 positive, grade three.
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Old 11-30-2015, 10:34 AM   #14
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Re: Perjeta/Herceptin early BC? Share your experience.

Water tasted terrible while I was getting TCH. Try green tea, ginger ale or any juice that seems appealing. That might change from cycle to cycle. For food, try white rice, toast, apple sauce and bananas.
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Old 02-17-2016, 02:49 PM   #15
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Re: Perjeta/Herceptin early BC? Share your experience.

Just finished year of Herceptin given every 3 wks. Had 12 wks taxol too.I looked at this discussion board because I've been experiencing strange and inconsistent muscle pain, esp in my legs. I've recently associated it with Herceptin...I feel it the day or two after infusion and it's been getting worse as time goes by and the number of treatments add up. Wondering if age is a factor. I'm a (very active) 69.
I also have the runny nose, watering eyes, esp when I first go outdoors.
My balance doesn't seem as good as it used to be and I have a lot of stiffness in the morning and after sitting for awhile.
I'm oh so glad to be finished with treatment and I look forward to these effects dissipating as time goes by.
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Old 03-11-2016, 12:40 PM   #16
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Re: Perjeta/Herceptin early BC? Share your experience.

Those all sound like side effects that I had after being on Kadcyla for a long time. Kadcyla lowers your potassium levels, so it is a good idea to take a potassium/magnesium tablet. It will help with muscle pain/cramping. I was on Perjeta and Herceptin, but it did not help the pleural effusion or cancer in my right lung. I am now back on Kacyla.
Breastfeeding when diagnosed with Her2+ May 2008
Oct 2008 Double mastectomy 22/28 lymph nodes positive
Decline chemotherapy (decision I regret)
Nov 2009 Mets to lungs and bones.
Dec 2009 Start Taxotere and Herceptin, T1, T3 heal completely and lungs are clear, T2 and first rib have lytic lesions. First rib becomes sclerotic. Considered stable.
May 2011, Onc calls progression and I cross over from comparison arm of clinical trial to TDM-1
Brain scan in Sept 2011 showed small tumor in right cerebellum, did Novalis radiation.

Feb 2013 < 1cm tumor in left frontal lobe. Did Novalis in March and latest scan shows no sign of brain metastasis.
Aug 2013 did 36th round of TDM-1 Due to TDM-1 side effects, shortness of breath, and difficulty getting my balance when getting out of bed, agreed with my oncologist to stop TDM-1.
Took a six week break, bone scan showed small uptake on left first rib. CT showed hypodensities in liver (too small to biopsy) and small nodule in lungs (mediastinal).
Started Navelbine weekly. Did one round with Herceptin.
Skipped next 2 rounds, due to neutropenia. Next chemo 7th Nov - have had 3 Neupogen shots, so WBC should look better... Did not tolerate Navelbine well.
December 2013 scans show no sign of active cancer.
March 2014 - currently only on Herceptin - brain MRI clear, PET/CT two nodules in right lung show uptake
May 2014 - stop Herceptin.
Sept 22, 2014 Brain MRI clear :) PET/CT Progression in lungs.
Sept 2014, Xeloda, Tykerb and Herceptin.
Nov 2014 - Decide to take a break from all treatment.
May 2015 - Brain met radiated with Novalis
July 2015 - Have progression in right lung.
Sept 2015 - Perjeta and Herceptin alone after a 9 month break from all treatment.
Nov 2015 - Thoracentesis 1500ml removed from right lung.
Dec 2015 - Two tiny 1mm brain mets radiated in right cerebellum.
Feb 2016 - Thoracentesis 2200ml drained from right lung
Feb 2016 - Stopped Perjeta and Herceptin and started back on Kadcyla as I had no previous progression on it. After 1 cycle of Kadcyla markers begin to drop. On second cycle add Keytruda.
March 2016 - Thoracentesis 1650ml drained from right lung.
April 2016 Thoracentesis 1500 ml drained from right lung.
June 2016 CT scan shows progression in right lung, as well as moderate pleural effusion requiring Thoracentesis.
June 2016 Decide to stop Keytruda, and will do chemosensitivity test through Rational Therapeutics. Plan to continue on Kadcyla for next two cycles.
July 2016 - Start weekly Abraxane with Herceptin. WBRT with hippocampal sparing, Taking Namenda. 15 sessions over 3 weeks.
Aug - Dec 2016 - 2 infusions of Navelbine, very hard on my body and still dealing with anasarca (generalized edema) 1 infusion of Havalen
My doctor wants to put me on hospice.
Dec 23rd 2016 - I am granted compassionate use of Neratanib.
May 31st 2017 - still on Neratinib, feeling good.
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Old 03-23-2016, 07:02 AM   #17
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Re: Perjeta/Herceptin early BC? Share your experience.

Hello everyone I am new to this group, I am currently on Herceptin and perjeta not too many side effects but i'm tried literally tried, exhausted all the time and tired of getting iv therapy every 3 weeks....when I ask my onco how much longer will I get h&p she just says as long as it is effective oh by the way I am stage 4 BC mast to liver and I started THP in July 2015 started have severe side effects from that and had to change to just H&P and Tamoxifin....has anyone every took a break from chemo?
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Old 05-09-2016, 03:15 PM   #18
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Re: Perjeta/Herceptin early BC? Share your experience.

I am also stage IV with a lesion to the liver. I have been receiving herceptin and perjeta every three weeks since November of 2013 with no end in sight. Its a challenging mental adjustment to know this is your life until.....a recurrence? So ya no break from chemo...ever as a #lifer. My echos are good and I have a pretty good quality of life. I am very active, but i make sure I sleep enough and eat a healthy diet. Welcome to the HP vitamin club #lifers.
*October 2013 mammogram suspicious lump right breast
*Oct. 2013 Breast MRI reveals 2.5 cm tumor right breast 6-7 nodes positive
*Nov 2, 2013 PET/CT tumor right breast, 6-7 nodes include right axilla and one above clavicle, 3.5 cm lesion on dome of liver
*Nov 4, 2013 meet oncologist: schedule port placement
*Nov 5, 2013 baseline echo 65%
*Nov 13, 2013 start THP six cycles every 21 days
*Nov 20, 2013 blood counts now coming back quickly start neulasta following next treatment, no pain and it worked!
*Jan 19, 2014 syncope, ambulance ride to hospital, cracked a tooth and chipped three, six stitches in chin, CT scan shows brain is ok but am required to follow up with neurologist.
*Jan 28, 2014 PET/CT shows great response to THP
*Jan 28, 2013 echo, all is good 60-65%
*Feb 2014 brain MRI, no missing parts and no extra parts, all clear
*Feb 27, 2014 last treatment with taxotere
*Apr 22, 2014 PET/CT shows complete pathological response to THP amen!
*Apr 22, 2013 echo 60%
*continue vitamin H and P every 21 days until...eternity?
*May 2014 emotional melt down, demand port be removed.
*May 22 2014, biopsy of original tumor rt. breast, no cancer cells in 8 tissue samples, amen
*June 2, 2014 Port removed, happy dance! Just couldn't tolerate the port any longer; it never worked properly and was extremely uncomfortable
*July 24, 2014 echo 60%
*August 28, 2014 PET/CT all clear NED
*Oct 29, 2014 echo 65%
*Feb 4, 2015 PET/CT NED!!!
*Feb 4, 2015 Echo 65-70%
*May 19, 2015 mammogram all clear
*May 19, 2015 Brain MRI all clear!
*August 18, 2015 PET/CT NED!!! amen!
*March 8, 2016 CT w/contrast NED
*March 10, 2016 Echo normal
*June 2016 Echo normal
*September 7, 2016 CT scan w/contrast NED
*September 8, 2016 Echo normal
* still receiving infusions every 21 days of Perjeta and Herceptin with no end in sight......
*March 2017 CT scan NED and echo normal
*May 2017 mammogram all clear!
*November 2017 CT scan NED and echo normal

"Better pass boldly into that other world, in the full glory of some passion, than fade and wither dismally with age."
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Old 11-10-2016, 05:55 AM   #19
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Re: Perjeta/Herceptin early BC? Share your experience.

I am currently getting Perjeta and Herceptin ever three weeks, and Taxol two weeks in a row with a week break and then two weeks in a row. I was told by my oncologist that I will be taking Perjeta and Herceptin for the rest of my life, or until the stop working, and I will be taking Taxol until mid-January. I do find going to the hospitable every two to three weeks to get these drugs administered to be very tiring, and at my last treatment I told the receptionist that I feel like I live there. I guess if it works though, than it’s all worth it. I just keep telling myself, that this is my life now.

12/15 – First mammogram
01/16 – Second mammogram and ultrasound.
01/16 – Meet surgeon and go for third mammogram, second ultrasound and biopsy. Surgeon confirms cancer in left breast and lymph nodes and sets surgery date.
01/16 – Chest scan and bone scan done– all looks good.
02/16 – Surgery - left breast mastectomy and 16 lymph nodes removed (8 had cancer).
02/16 – CT scan done – small nodules on lung but Doctor advises it’s normal. They will continue to monitor just in case.
03/16 – Meet radiation oncologist and find out results of Pathology Report. I’m told that I have locally advanced breast cancer, based on the size of my tumour (7 cm!) and the fact that they found cancer cells in eight lymph nodes. I’m also told that I’m HER 2 positive, and that my cancer is stage 3, grade 2.
03/16 – Meet oncologist and am told that my cancer is actually grade 3, and that I should have done chemo before surgery. Too late now!
03/16 – Start first of six doses of chemo (Carboplatin and Docetaxal) and Herceptin (for one year).
04/16 – Have port put in.
04/16 – Get second dose of chemo, but Docetaxal is left out due to liver enzymes being high. I was unable to get a full dose of Docetaxal after my first treatment.
06/16 – Finished chemo! One month off and then I start radiation.
06/16 – Start Tamoxifen.
07/16 – First radiation treatment – 24 more to go!
08/16 – Went for Genetic Testing to see if I have the BRCA gene.
08/16 – Radiation oncologist biopsies “scar tissue” on my scar.
08/16 – I am told that I have a “local recurrence” and need to have rush surgery.
09/16 – Meet surgeon who advises that I need to meet with a plastic surgeon, as they will need to do a skin graft to close me up after surgery.
09/16 – Go for rush ultrasound, bone scan, breast MRI and CT scan.
09/16 – Meet plastic surgeon and all looks good. A surgery date is set for October 4.
09/16 – Meet oncologist who advises that ultrasound and bone scan look good, and that MRI shows three small masses at surgery site, but lymph nodes are clear. Still awaiting the results of the CT scan, but we are positive it will look good.
09/16 – Get a call from my oncologist, who advises that CT scan shows small spots on my lungs, and a large lymph node in the middle of my chest. This means the cancer has spread! She looks into getting me funded for TDM1 and cancels my surgery.
10/16 – Meet oncologist, who advises that I have to take Perjeta before I can take TDM1. I start Perjeta/Herceptin every three weeks for an indefinite amount of time, and Taxol, which I will take two weeks on, one off for 8-16 treatments.
10/16 – Stop Tamoxifen.
10/16 – Meet surgeon, who reviews my CT scan and advises that the spots on my lungs may not be cancerous, and that he doesn’t see a lymph node in my chest. He thinks it’s a spot on my lung. I’m feeling very confused! He advises that my oncologist doesn’t want me to have surgery to remove the three small masses on my scar line, as she wants to use them as a way to determine if the treatment is working. He advises that if they have not shrunk in 6 months, he will revisit surgery.
10/16 – CEA blood test to determine Tumour markers. Results were normal (2.7). My doctor advises that this could mean two things: (1) that the treatment is working, and the tumours are shrinking, or (2), that I'm one of those people who never get elevated CEA levels. Given that some people never get an elevated CEA level, this test doesn’t seem very accurate to me! Asked for PET scan, but am told I don’t qualify.
10/16 – Brain MRI – NED!
11/16 - CA-15-3 blood test – Tumour markers are normal at 19.
11/16 – CT Scan scheduled for November 22. I can’t wait to find out if the Perjeta is working!
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Old 05-16-2017, 10:23 PM   #20
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Re: Perjeta/Herceptin early BC? Share your experience.

Hello Everyone!

I wanted to ask what your experience has been on Aromasin. I had to switich from Arimidex due to major bone pain and unbearable side effects. I was wondering if anyone is having problems with Aromasin. Has anyone noticed a loss of smell and taste since you've been on the pill? I started last October 2016. So far I am able to tolorate the pill. Can you please share your experience while on Aromasin. Any cognitive issues?
Thank you so much!
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