HERCEPTIN and/or PERJETA Threads

Thank you everyone for letting me know how you responded to treatment. I feel much better. My MO called me and told me that she was pleased with my response and that there is a clinical trial coming very soon looking at surgery/radiation to the liver spots post treatment and many spots can be just scar tissue. I'll stop worry and be happy!

Karen I'm wondering if it's just the normal rest and growth cycle of hair. I'm sure you will notice new growth right away. After 4 rounds I notice my eyelashes and brows thinning. Did yours thin during treatment or fall out all at once? I am not sure what I'm going to do without lashes but I'm sure they will be gone after the next round. If your lashes are all on the same rest and growth cycle I hope it's not a reoccurring event! Normally every hair folical is on a different rest and growth cycle so we never really notice hairs coming and going. What are you doing? Eyeliner, glasses or false eyelashes? Not sure what I'm going to do...

Barb

Hello. When my eyelashes were what we thought long enough I had extensions put on. They looked amazing but of course all fell off when my eyelashes shed recently. I am thinking seriously about the tattooed eyebrows.Thanks Sue for sharing your positive experience. I know this cosmetic stuff is trivial but feeling good about yourself is important. I go to a place where they have lots of experience with permanent makeup. Maybe for Christmas I will get myself eyebrows! I am thinking of trying Latisse for the eyelash growth.

Wishing all a lovely weekend ~ Karen

Rachel,

It's a small world. I split my treatment between the Alfond Center and FMH, my MO covers both facilities. The Alfond center is a beautiful facility. I too remember when it was just a rolling golf course that you could see from the highway. Now MG and HACCC are nestled on that rolling terrain and a more peaceful healing center couldn't be imagined. The fountains and gardens are inspiring.

Kyphoplasty has been a game changer. I am just days out and almost back to 100% function and painfree. I am seriously considering if radiation will be necessary. I have my simulation rescheduled for Thursday. We'll see what the RO has to say about it. They did change my infusions meds. I was supposed to go with Taxol but they ended up going with Cleopatra protocol and Taxotere was infused. I am glad for that. I wasn't happy with the weekly infusion schedule. I've had Taxotere before and I know what to expect. My immune system recognized Herceptin and I had to have the infusion stopped to get some Benedryl on board. My lymph nodes swelled with a histamine response, my neck felt bruised and stretched but otherwise it was an uneventful treatment. I got the results from my Dexa scan and will be getting Xgeva too. I have moderate fracture risk in both R&L femoral neck/head and high risk in lumbar spine (duh!). Glad there are drugs for building bone. I've never broken anything in my entire life in spite of many, many efforts to do so. Have to wonder why my bones are so brittle now. It's not like I was HR responsive the first time around, I haven't had any hormone suppression treatments.

Hello-currently on H-P-Taxotere and Xgevia. Just finished my second treatment. Not sure how many I will have to have. My MO has not discussed with me yet. Is there a standard protocol? I am a newbie for bone mets. Hopefully there would be "rest period". My SE with taxotere have not been pleasant but coping best I can.

Bluefrog thanks so much for the reply. How are you with SE. I usually have my infusion on Wednesday by Sunday I am experiencing the fatigue and nausea. The big "D" also kicks in. I am pretty much housebound for several days.

Hi, I just finished round 6 of taxoterrible, H&P. My main side effects have been....I'm super tired the week after, headaches, heartburn, watery eyes, no hair, some D, and my fingernails are starting to hurt. I'm hoping they don't fall off. I get scans on the 10th, if I have shrinkage, more taxotere, if I'm stable or have progression then I'm on tamoxifen, H&P. Hope this helps. I know it's different for everyone.

Glad you mentioned pantoprazole. I've been using 20mg famotadine and gaviscon around the clock as well as sitting up all the time and I still cannot get rid of the dagger from the center of my chest through to my back. I am going to ask for some Rx help. Heartburn is the pits. I have my first XGeva injection this morning and then a simulation for radiation treatments this afternoon. I will have plenty of opportunities to accost a doctor for some heartburn relief. Thank you, thank you!

The prescription Prilosec helps me a lot. I don't realize just how much until I miss a dose and get sick.

Great tip on Prilosec. Heartburn plagues me also so I will also ask for RX at my next MO apt. This site has been so helpful and comforting. Everyone is so kind and supportive. So glad I joined!

Read online about a new Her2 Positive PR- ER- treatment--Margetuximab (MGAH22-01). Has anyone heard about it? You can google the article: "Blackwell Discusses Emerging HER2-Positive Breast Cancer Agents".

ALSO, article online from MDAnderson about a "Novel Immunotherapy Vaccine Decreases Recurrence in HER2 Positive Beast Cancer Patients".

Next time I see my oncologist am going to ask. Always looking for more hope! The best to all--enjoy today---

AliceS I posted some information I found about a HER2 vaccine trial at the University of Washington here:

https://community.breastcancer.org/forum/8/topics/...

It's a bit of an odd study, combining a vaccine with a kind of turkeytail tea. It is also temporarily suspended, due to lack of funding. I found another, older trial here that is still recruiting patients:

https://clinicaltrials.gov/ct2/show/NCT01730118

There are two arms of the study: One for women who have never had H or P, and one for women who have, but it seems to indicate that you need to have gone through a couple of protocols, so it's not for me. There was a research note published in Nature that is rumored to be leading to a Phase I trial at Stanford, but I have not been able to find a reference to the trial: http://www.nature.com/nature/journal/v521/n7550/full/nature14424.html.

Fantastic news Hydranne!!! Thank you for sharing it with us! Celebrate!

hi all! I have been reading up but haven't been posting much. You guys give me hope just reading your posts! I have been on faslodex with a herceptin for about a year and half since my mets DX. Tumor markers started rising and scan was ordered. Progression. So we are trying this combo THP. I forgot how bad my nausea is with chemo! I had TCH during my first DX and I thought that was bad bec of the carbopatin making everything taste metallic! But this is just as bad! And I can't remember how long it lasted from the first treatment. Does it go away after couple of days or its permanent while I'm on taxol? Please tell me it'll go away and anything that will help! I have been sucking on Halloween candy all morning!

Congrats, Jen!

Jen76: congratulations! That is incredibly exciting and gives me great hope. I've had 4 rounds and my response has been strong based on mammogram. I'm waiting for bone scan results.