HER2 Support Group Forums

HER2 Support Group Forums (https://her2support.org/vbulletin/index.php)
-   her2group (https://her2support.org/vbulletin/forumdisplay.php?f=28)
-   -   Perjeta/Herceptin early BC? Share your experience. (https://her2support.org/vbulletin/showthread.php?t=63092)

StephN 04-30-2015 11:45 AM

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.

linzer 04-30-2015 02:34 PM

Re: Perjeta/Herceptin early BC? Share your experience.
 
I participated in this last fall. It's a wonderful opportunity if you can do it!

Teal55 05-11-2015 02:24 PM

Re: Perjeta/Herceptin early BC? Share your experience.
 
Hello,

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.

mburkhart 05-11-2015 07:39 PM

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.

Teal55 05-11-2015 07:50 PM

Re: Perjeta/Herceptin early BC? Share your experience.
 
Thanks!
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!
Teal

mburkhart 05-11-2015 08:18 PM

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.

Teal55 05-11-2015 08:22 PM

Re: Perjeta/Herceptin early BC? Share your experience.
 
Thanks!
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!

Teal55 05-12-2015 08:31 PM

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!
Teal

mburkhart 05-12-2015 09:38 PM

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.

Kathrine 07-24-2015 10:35 PM

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.

Kathrine 07-24-2015 10:38 PM

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.

girlmom 08-04-2015 04:53 AM

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!

mburkhart 08-04-2015 12:45 PM

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.

Donna H 11-30-2015 10:34 AM

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.

murphy 02-17-2016 02:49 PM

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.

waterdreamer 03-11-2016 12:40 PM

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.

Monique-w 03-23-2016 07:02 AM

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?

Colleen 05-09-2016 03:15 PM

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.

TiffanyS 11-10-2016 05:55 AM

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!

Teal55 05-16-2017 10:23 PM

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!


All times are GMT -7. The time now is 11:35 AM.

Powered by vBulletin® Version 3.8.7
Copyright ©2000 - 2024, vBulletin Solutions, Inc.
Copyright HER2 Support Group 2007 - 2021