HERCEPTIN and/or PERJETA Threads
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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
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Dear Karen and bstein, just a vote here for the wonders of permanent cosmetics. My eyebrows and lashes never fully returned (after one of my various chemos) and so for the last several years actually, I have had phoney eyebrows applied by a perm cosmetics expert. Gotta tell you they look great (so I've been told). Permanent eyeliner def. not worth the effort though. Best to you -SUE
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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
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Hard to keep up with the speed of posts! I am sure I will miss responding to someone and it will be completely by accident. I took my infusion on Thursday. My immune system recognized Herceptin and wasn't happy about it. We had to stop the drip for 30 minutes and do antihistamines and an anti inflammatory. we resumed the infusion and finished. I will need to be pretreated next time though. Otherwise it went well and was more or less routine. Was pretty painful from Kypholasty the day before but today I was able to do a three mile walk in the woods. Something I haven't been able to do since early August because the L2 fracture was cripplingly painful. It was a rugged week but that seems to be more or less behind me and other than nothing tasting great and my mouth/tongue feeling rough, I am in a really good place to end up the week. Hope everyone else is well.
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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.
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hi bluefrog76 just hoping that your scan results went well for you!
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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.
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I'm on the same protocol and my MO said our goal is 8 with taxotere then a year of HP. I've had 4 so far.
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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.
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I had an awful time with the first round. 12 days of diarrhea; I had to go in for fluids twice. They reduced the taxotere 20% for subsequent rounds. I've been okay. My stomach is still pretty touch and go every day and I'm always taking Imodium. The fatigue and full body pain (I feel like I have a bad sunburn) is really bad days 9 and 10 post-infusion. I'm short of breath a lot of the time and sleeping more than usual, but I also feel like I'm regaining a lot of my life. I'm not working, so that helps things be more manageable and also allows me to focus on my kids.
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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.
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txmom, I was put on pantoprazole for my heartburn (Zantac and chewing Gaviscon wasn't 100%) no heartburn at all now! My watery eyes come and go. I'm icing my hands, feet and mouth during the taxotere infusion which I think has worked because when I didn't I had terrible taste buds, burning feet but hand have been OK because I have always put them in ice bags.
Blu frog. Most people are on HP for more than a year with stage four. For life until there is progression or we know more about how long to give it when we are NED...
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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!
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Bstein, thanks, if I have to do more Taxotere, then I will ask for some heartburn relief. Heartburn and watery eyes are my worst SE but overall it hasn't been bad which is why my MO wants to order more. I suck on ice during the infusions and have not had any mouth sores since. Oh yeah and my memory, oye. Bluefrog, some of the side effects went away for me after the 2nd infusion. Hope it gets better for you. Have a great day everyone. XO
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The prescription Prilosec helps me a lot. I don't realize just how much until I miss a dose and get sick.
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Thanks for the tip on Prilosec. I'm going to request it at my next onc appointment. For me, the heartburn has gotten worse over time. At each treatment I am given Zantac by infusion but it quickly wears off.
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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!
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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---
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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---
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Has anyone heard of this new HER2 positive ER-PR- treatment? Margetuximab (MGAH22-01). Google: "Blackwell discusses Emerging HER2-Positive Breast Cancer Agents"
ALSO, article online from MDAnderson: "Novel Immunotherapy Vaccine Decreases Recurrence in HER2 Positive Breast Cancer Patients"
Next time I see my oncologist will ask about this. Am always looking, hoping---trying to stay ahead of all this.
Enjoy today--the best to all!
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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.
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Alice, husband had printed out the article for me re: the new HER2+ drug. YIPPEE! More good news from the world of science. Onward! SUE
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Fantastic news Hydranne!!! Thank you for sharing it with us! Celebrate!
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Great news Hydranne! Thanks so much for sharing
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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!
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I just finished 9 rounds or taxatere Herceptin and perjeta. the first 3 ct scan showed an almost complete response. next 3 I stabled and then last 3 GONE.. I was dx with liver mets right out the gate in march 2015. reading this thread has help me most of all so I decided to finally post something. I will continue with just Herceptin and tamoxafen and have scans every 3 months. and I am very nervous about it. but very grateful.
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Congrats, Jen!
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Congratulations
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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.
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Minnie72- It WILL get better....first 3-7 days are BAD depending on the round but then, it gets better....Taxotere is the "bad girl" as my onc nurse called "her"....you just have to get ready for next round night before by praying/Ativan/positive thoughts....or a combo of whatever you do to get ready...YOU can do this...you CAN do this....you can DO this....you can do THIS..........YOU CAN DO THIS! Sending positive healing energy your way!
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