Looking for Her2 Positive survivor stories

mistyeyes

Thank-you AliceS- I love coming on to read all of the comments and the hope and encouragement that comes from here. And reading about everyone's side effects/fears/whatever makes me feel a little more normal.....or at least I am in a big group of abnormally great ladies.

Pipandor

Just got the results of the CAT scan. They were all clear so now I feel confident enough to post here, and I hope to be back for many years to come. I received the last Herceptin infusion last Friday, and aside from an insanely itchy left arm, I feel well and very grateful to be alive and NED. Thanks to all of you out there who post. Your stories were a beacon for me throughout this past year.

Suburbs

pipandor, bravo and congratulations on your good news. I share your itchy arm and joy for the excellent results. All the best

Lilaa

Dear survivor,

the ones who are ER+ and HER2+: can you please write down how many % you are ER+ and for how long you have to take Treatments for that?

I am asking, cause I am very low ER+ (10%) and HER2+ and doctors dont know if and for how long i should make an antihormonell therapy. that really freaks me out, since i fear recurrence when doing the wrong treatment

Tara17

Lilaa --if your doctor isn't sure about ER therapy, perhaps they can discuss at tumors board conference to get a consensus opinion from several doctors or you could consider a second opinion for this question ? Wish you all the best

So glad to hear all these survivor stories

Pipandor

Thank you Suburbs! Look forward to seeing your post here too

Lilaa

Tara17, yes my doctor will discuss this ataa tumor board.

I just wanted to see if there are ladies with low ER and HER2+ who llived long without getting metastasis.

Because I am afraid that a low ER might have a higher risk for recurrence, than a high ER.. Because a low ER can't be treated as good as an high ER (that's what I assume), but it is still there and can help the cancer to grow.. hope that I am not right... maybe there are ladies who can prove me wrong

Tara17

hi ladies --looking for advice. during chemo teaching they said that herceptin can cause a delayed reaction with a skin rash like acne. I have developed a slight rash that looks like acne behind my ears and back after my second dose of herceptin. I worry that it's the herceptin --this is the main drug that is going to save my life and so I don't want anything to slow me down from getting this drug. Has anyone had this rash? Did it go away with repeated doses ? Were you able to get the herceptin despite rash? Going to ask my doctor but would appreciate any personal experiences with this issue. Thank you so much.

Suburbs

Tara17, I have had the same skin rash though perhaps (face, trunk, legs) much worse and have been taking oral steroids for easily 14 of the 21 day cycles of Herceptin. The topical treatments ( cortisone ) did nothing. I'm on my 3rd round and the rash has not worsened. Unfortunately, only oral steroids got mine under control. Also, stupidly, I would wait for it to get absolutely terrible before taking the steroids which I hate. Check out the Feb 2017 chemo thread where many others are getting a Herceptin. Hope your clears quickly

Tara17

dear suburbs thanks for the prompt response. I completely understand hating steroids. Glad you have been able to continue getting herceptin. Does Benadryl do anything for the rash? I will check out the February thread --thank for the good wishes and the prompt advice. Hope your rash comes under control and that you are able to tolerate your steroids .all the best to you

CassieCat

Checking in at 2.5 years now since diagnosis. I had another breast MRI last week and all continues to be clear. Looking forward to reaching 3 years this August!

Maya15

Tara, I've had the rashes for the best part of a year. My MO said it was follicullitis because Herceptin attacks something in the skin that normally keeps bacteria in check. She prescribed clindamycin, but it didn't work for me. When I was on oral antibiotics after surgery, the rash disappeared completely, but came back after the antibiotics. In the end I decided to just live with it because I don't want the cancer coming back.

Pipandor, I also just finished Herceptin (and Perjeta). Did you have the CAT scan because they were worried about something or just for a check up? My MO said there would be no scans after treatment which I find scary because it would be nice to have the peace of mind once in a while that there's nothing to worry about.

mistyeyes

CassieCat - Congratulations! And thank you for sharing!

Tara17

maya15--thx for sharing your experience. Appreciate the inpu

Pipandor

Maya, I got the CT scan because my oncologist in Montreal (who initially referred my case to the oncologist in my area who supervised my chemo) was surprised that I had never been scanned, and ordered one. From now on, I will be getting standard oncology blood work (it doesn't look for markers) every six months (in Montreal, because my local oncologist would not do it) and a yearly mammogram here. A bit scarey, but it will be quite a relief not to set foot in a hospital for a while!

Maya15

I hear you! I am so tired of hospitals and doctors. I have to have my port removed and just the thought of going in for yet another surgery freaks me out, but I really want to get rid of the port, so there's no other way.

Kattis894

I still have my port. My doctor asked me to keep it for a 2-3 years, if it did not bother me...well...just the fact they adviced me to keep it for that long kind of bothers me..but the port itself does not bother me so much so I still have it.

Pipandor

Tara, I had a bad case of foliculitis all over my head about halfway through weekly taxol/ Herceptin treatments. Cortisone creams did not help and at first the itch was pretty bad. I sprayed my head with a mix of alcohol and water and wore soft cotton caps to avoid scratching. It took about a month to heal.

About ports, mine was only used for 4 treatments before it had to be removed. A clot formed around the catheter in a deep vein and after it was removed I had to inject myself daily with Fragmin to prevent thrombosis and/or embolism. Still have a pretty ugly hole in my arm where it used to be. Apparently that isn't uncommon, but no one ever mentioned it before it was put in.

lfasano44

I haven't been on here in forever but just wanted to check in and say I'm still here! I had a minor reoccurrence in 2012 but I'm here cancer free almost 9 years later!

Pipandor

That's great Ifasano. Thanks for checking in. Your profile shows that you have had no treatments. Is that so? Also how did your reoccurrence happen and was it treated? This is all precious information for many of the ladies who were recently treated.

AliceS

lfasano44---Another fabulous story--congratulations!!!! So happy for you and you've encouraged many of us. What was the "minor reoccurance"? Don't stay away so long----would love hearing more from you! Cyber hugs---

Stephanie

ang7894

Hello , 5 years & 3 mo and doing great

Monsalve238648

tengo 34 años diagnosticada desde el 1 de agosto 6 quimioterapias lumpectomia y actualmente herceptin y perjeta tengo dolores en los huesos y cansancio extremo

Pipandor

Bienvenida al grupo Monsalve. You will find a lot of support and information on Breastcancer.org. Bone pain is not unusual, and for me at least, it got better as time after chemo passed. I suggest you try to complete your profile. It will help users who have undergone or are undergoing similar treatments to recognize and help you.

LiDu

Maya,

I'm worried as well about no CAT scans, but my oncologist advised me that insurance won't pay for them. The only screening that it pays for is mammography and since I've had a bilateral mastectomy that is obviously a no go. I just get bloodwork done every three months and monitor how I feel. Like that isn't nerve racking. 

My oncologist wants me to keep my port for at least a year, but the infusion nurses say there's no reason to have it removed at all if I don't want to. It doesn't bother me other than some bras not being comfortable. I'm not bothering with wearing "boobs" more and more. I just don't see why I should. If my flat chest bothers some people, that's their problem.  

Pipandor -- Re: you port situation, was your port in your arm? That might seem like a dumb question, but I've not heard of that.

Pipandor

LiDu, yes my port was in my arm. After about three weeks my arm got really sore and I started to see veins in my shoulder and chest on that side. When they removed it, they performed a scan that showed that a clot had formed around the catheter in the subclavicular vein. The pain stopped as soon as it came out.

I understand that this can happen in people not undergoing chemo for cancer that have a catheter but that it is six times more likely to happen if you are undergoing chemo and that deep vein thrombosis and embolism are not uncommon among cancer patients. That is something I think they should mention when proposing a port.

lfasano44

hi sorry I did TCHonce every three weeks for six cycles, rads and herception for one year. When it came back it was in the lymph nodes in my neck and I did another chemo agent (sorry I can't remember which one) herception and projeta for a year

lfasano44

Hi there! Thank you for your kind words. It came back to the lymph nodes in my neck. I did chemo (i can't remember which one ) and Herception and Projeta for a year and rads but couldn't finish the rads because of problems swallowing. Its been 4 years and i'm ok (i think ). All of you will do great! I remember being so nervous because I had such a big tumor and lots of nodes and there wasn't really anyone else like me on here but hearing everyone's stories was always encourgaing! They have so many new things now compared to when I was first dxd and more and more to come, we should all feel really hopeful.

mistyeyes

I am so happy to read the stories of people doing so well so many years after. It gives me hope. Thank-you for taking the time to share.

NWArtLady

I'm here 6 years out! Doing well and exercising regularly. For those in the Northwest, check out Team Survivor Northwest for exercise groups of all levels and types of exercise!

Team Survivor Northwest