Herceptin: New member here: I have... - SHARE Breast Canc...

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Herceptin

RobPal profile image
22 Replies

New member here: I have ovarian cancer, stage 3C but have just found out my tumor expresses HER2 and is ER positive. Crazy - right,.... as this is found usually in breast cancer! Anyway they started me in letrozole yesterday and I will start getting herceptin. The hope is that it will work for me the same as it works fir breast cancer. Any advice on the herceptin? I obviously can’t find any OC patients that have experience with this drug....

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RobPal profile image
RobPal
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22 Replies
Curbs profile image
Curbs

Hi I had Her2 breast cancer and had a mastectomy, chemo, tamoxifen and Herceptin, I had Herceptin for a year and had no adverse side effects, I think Herceptin is the least thing to be afraid or worried about. Good luck on your journey 😘

RobPal profile image
RobPal in reply toCurbs

Thank you so much!!!!

ToryH profile image
ToryH

I had Herceptin for a year didn’t experience any any side effects from it. Sending good thoughts!

RobPal profile image
RobPal in reply toToryH

Thank you so much!!!

Rhwright12 profile image
Rhwright12

I’ve been on Herceptin for about 4 years now...The biggest pain in the bottom is scheduling the time to get it every 3 weeks...Basically no side effects to worry about...Like I said only side effect is the infringement in your time...😀 Good luck!

RobPal profile image
RobPal in reply toRhwright12

Wow - thank you for taking the time to let me know!!!

Scarey4 profile image
Scarey4

I’ve been on herceptin for 8 1/2 years. I take it every 21 days. I have neuropathy in my hands and feet, body aches and I get a little sores mostly on my elbows. It also affects my tonsils, inflammation and throat. Just a couple days after Infusion. Remember we are all individuals and I have manageable side effects and you may not have any. Bless you and I hope herceptin helps you.

RobPal profile image
RobPal in reply toScarey4

Thank you!! Hearing that it has helped keep cancer away from you for 8.5 years is pretty exciting to me!! Are you HER2 positive?

Scarey4 profile image
Scarey4 in reply toRobPal

Yes, I am her 2 triple positive. Keep hope alive!i will pray for you!

RobPal profile image
RobPal in reply toScarey4

Also have you tried taking a Claritin daily for the body aches? It particularly helps with joint pain.

Scarey4 profile image
Scarey4

I have not tried Claritin but I take Zyrtec. I am also on tamoxifen which causes body aches. I pray that you become cancer free. I have been Ned for 8 1/2 years! It’s a miracle! Praise God!

RobPal profile image
RobPal in reply toScarey4

Praise Him indeed that your cancer is gone for good!!!🙏. Do they not feel confident in taking you off herceptin?

Scarey4 profile image
Scarey4

No that’s not it. My doctor at mayo recommends that I stay on herceptin indefinitely. Because my cancer has a high rate of relapse. He has a women that has been Ned on herceptin for 20 years

RobPal profile image
RobPal in reply toScarey4

Wow!!! That is amazing!! I had read that herceptin might cause heart issues if in it too long? No issues for you then? Do you do anything extra fir heart health?

Scarey4 profile image
Scarey4

I have not had any problems with my heart. I get an ekg every 6 months. Praise God my heart is fine. I take a low dose 81 mg aspirin once a day. It’s recommended for people over 50. My doctor says I don’t need it but I take it because clinical information says it helps

RobPal profile image
RobPal in reply toScarey4

So happy for you👏. Sounds very positive - thank you!! Wishing you continued blessings in Jesus’ name✝️🙏!!

Karina66 profile image
Karina66

Hi,

I've been on Herceptin close to a year(October this year will be a full year) I also take Perjeta with the Herceptin. I was diagnosed with HER2+ Stage 2. I haven't had any major side affects like all the other ladies have mentioned. I do get an echocardiogram every 3 months to make sure there are no damages being done to my heart. So far so good.

Good luck with your treatment.

RobPal profile image
RobPal in reply toKarina66

Thank you for replying!!! I’m very hopeful that it will work for my ovarian cancer since it is HER2 positive and ER positive✝️🙏. Wishing you blessings as you deal with this disease!!

Scarey4 profile image
Scarey4

Thank you. My prayers are with you🙏

Dimsdale18 profile image
Dimsdale18Partner

A great resource is the SHARE Cancer Support ovarian cancer helpline. All of the volunteers are ovarian cancer survivors and can offer support because they have been where you are now. In addition to the Helpline, if you want specific information on your type of cancer, we have a peer matching service which allows us to match you with someone who has a very similar diagnosis and/ or treatment. You can reach out 7 days a week from 9:30 am to 9:00 pm. The number is" 844 ASK-SHARE or 844-275-7427. Our website has many accurate and updated information, support group contact information and educational resources.

sharecancersupport.org. You are not alone with SHARE.

RobPal profile image
RobPal in reply toDimsdale18

Thank you for the information!!!

leonarde profile image
leonarde

I was on herceptin for a year. No problems at all.

Wishing you all the best.

Eileen

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