HERCEPTIN and/or PERJETA Threads
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Just wanted to drop in for a minute to say "hi" to everyone as I haven't posted much lately but have been trying to read posts when I can. I was reading pwilmarth's post above where she had cataract surgery and just wanted to share my recent experience along those lines. I was diagnosed with Fuch's Dystrophy back in 2009, which is of unknown origin involving the death of blood cells behind the cornea, causing blurred vision. Over time it just gets worse and worse. Recently the start of cataracts was added to that diagnosis, and I believe all the sight issues tie in with drugs like Taxotere, etc. Needless to say, my eyesight dropped to 20/70, and it scared me to death. Yesterday I went into eye surgery, and had the cataract in my right eye removed and received a cornea transplant from a donor. The thing I want to say about the whole experience is that someone died so that someone like me could have the opportunity to be given their vision back. I am so in awe of the thought that the person who died will live on with me, and it is a gift that I will always treasure. Words will not come easily but tears will when it comes time for me to write the donor's family to thank them for what their family member has done for me. We take life for granted sometimes until things like this happen, and then we realize how amazing life and people can really be. At present the eye I had worked on has left me temporarily blind in that eye, but in the next few weeks, my vision should return hopefully to about 20/30. It was literally an "eye opening" experience (no pun intended) as they give you a relaxing IV, but the IV is an absolute total waste as you are awake every second of the operation. I saw them take the old cornea out, put the new one in, and received several shots in the eye. Not the most pleasantest of experiences, but I'm having the identical operation done in the other eye in a couple of months. Blessings come in all forms, and once again, I have been blessed by someone I don't even know. My wish to all of you is blessings galore through this holiday season and into 2016 and beyond! Ann
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I just thought I would share this recent article from Nature:
Immunology: Another shot at cancer
I've been reading that there's been clinical trials with Herceptin and these vaccines which has reduced the risk of recurrence to zero.
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Thanks for the kind words everyone. I see my oncologist on Monday and I'm going to ask if he can add the Tumor Marker for ovarian cancer (I believe it is CA-125) to my bloodwork just for peace of mind. Thanks for the suggestion Sue.
Bstein- Best of luck with your surgery. When you say immediate reconstruction, does that mean a separate surgery? My thoughts are all over the place when I think about breast surgery. Sometimes I think I should do it, other times I think I should just leave it alone as the primary seems to still be shrinking. Fingers crossed for NED on your scans and I hope your EF is just from the Taxotere. I've heard it can fluctuate wildly and there are cardiac drugs to help if it gets too low.
Hydranne -Hope the Taxotere is treating you kindly and tackling that tumor!
Pwilmarth- Wowzers! Fantastic! Let's hope it lasts for a very long time…forever even! You never know!
Spicy – Congrats on the good MRI results! So glad to hear that your past scan "oddness" has quietly gone away, as I am in that "wait-and-see-limbo" right now too with three spots that seemed worse on the CT while everything else was much improved. I hope this most recent "oddness" goes away for you as quietly as the others. I agree with what you said about it getting easier. I feel like I've worried about as much as my body and mind will allow. Now when things come up I worry a bit and then think…well, it is what it is and we will handle it the best we can. I'm just sick and tired of worrying and stressing!
Teakie – oh honey, your post moved me to tears. What a gift you have been given! Your description of the surgery, though…ugh…that must have been tough. I hope you are able to regain your full sight soon!
Pwilmarth – I'll read that link on my lunch break. I'm finding this immunotherapy stuff so fascinating!
Back to work…I'm procrastinating doing my end of year review. Can't I just say I survived, came in every day and did a bunch of stuff? That seems like an accomplishment to me!
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Shutterbug, I'm happy for the positive news, but realistic that we're in a one-day-at-a-time, one-PET-scan-at-a-time mode.
Regarding Immunotherapy - there's just a lot of research being done right now, and not just for breast cancer, but all types of solid tumor cancers, as well as blood cancers. The large pharmaceuticals are very interested in this type of research because the potential for big profits is huge. They are working on "designer" treatments which create therapies based on the DNA structure of your specific cancer. Researchers are starting with metastatic cancer, but the potential is there to create preventative immunotherapy that will end metastasis.
The main thing I take away from all of this research is that we should always keep in mind that there are new treatments being developed everyday and that we can make ourselves available for clinical trials should the need arise. For some of our sisters who are new to all of this, there's so much fear and uncertainty about the future, but we need to spread the news that there is much to be hopeful about.
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Oh Teakie, I am so happy to hear from you. I am sorry for what you have had to endure, but amazed at the blessing you have received. You are right, people can be so generous and kind, even to folks that they have never met. Be well, Ann, and heal quickly. Fondly, SUE
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JUst wondering if any of you have leg cramping?
And...if so what do you do or take for it??
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Oh honey, you betcha I have leg cramping and almost all of us on this protocol do (ugh). At night mostly (even worse). I am a fan of the "bar of soap between the sheets" treatment. Somewhere in the past there was a long conversation about this, either on this thread or as it's own thread. Lots of good solutions were discussed, including some warnings about possible magnesium deficiencies (I think). Good luck babyduck. SUE
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Hi everyone!
I am feeling a lot better about things! After hearing that my EF decreased by 6% I got scared. Thank you all for your supportive and reassuring words. I since have started on a Beta Blocker (I asked and my MO said, OK)! I am also being referred to the Cardiac Oncology clinic for followup (they probably would have Rx me it anyway)!
Pwilmorth: Thanks for the article it got me prepared for my MO visit! I also found another article that may interest all of you about Beta Blockers while on herceptin and the decrease in resistance! http://www.ncbi.nlm.nih.gov/pubmed/25798840 It is a bit over my head at the beginning with all the cell division talk but the end is whats interesting!
Is anyone else on Beta Blockers out there?
Shutterbug: My bilateral mastectomies will be done by my surgeon and then while I am still asleep the plastic surgeon will do the reconstruction. I am planning tissue expanders but not sure if I will do nipple sparing (they offered but I am not sure if it is added risk leaving tissue behind without radiation) or just get 3D tattoos at a later date...leaning towards this. I spoke to a lady who had nipple sparing - looked great but when I asked her if she had sensation and she said that she "has to pretend she does", hahaha
Just finished round 7 yesterday and the MO did not hold the Herceptin! Have any of you used ice to prevent neuropathy? I feel silly soaking my feet in ice water, putting my hands in ice bags and chewing on ice the whole hour of taxotere! I find it really helps my taste buds (I didn't do it once and my taste suffered and I had ignored my feet until I noticed burning when walking and started soaking the last three times, always have done my hands and they are fine).
Hugs to all of you!
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bstein, don't worry about the beta blockers, I've been on them for almost 1 1/2 years since my EF plummeted to 10. The beta blockers and other cardiac meds got it back up and keep it at 45-50. So without them, I couldn't be on my lifesaving H/P. I've had no problems on these melds. Good luck.
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Hi, excuse me for jumping in....I finished my 8th THP infusion 2 and half weeks ago. My ankles are cankles. Any advice? I did have a cardioechogram 2 weeks ago and my heart was fine. I'm not having any other symptoms. Thanks so much for your help. Dana
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Oh ha ha, look at my chemo brain....I had an echocardiogram. ha ha
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Txmom: I have been thinking about this for a couple of days and hope that the fluid is now gone! The good news I'd that your ECHO was ok so you shouldn't worry. Likely just a temporary thing that will do away with elevating your feet, decreased Na and time.
Are you now done with Taxotere? I will be having my 8th soon, hoping to just continue with HP after that...Wishing you all the best!
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Hi Bstein, The swelling has greatly reduced. I had it for about 4 days. I have tolerated Taxotere really well and haven't had a lot of side effects (hair fell out, tired for 5 days, a few of my nails lifted, watery eyes sometimes) so I was surprised by the swelling. I lowered my salt intake, increased my protein and potassium intake. I also slept with my feet elevated. I will get my 9th dose of Taxotere on the 30th, then scans, and then probably Tamoxifen H&P. I hope things are going well for you and you are feeling good. Enjoy the holidays. Hugs for everyone.
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Wishing everyone a very Happy Christmas!
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Shutterbug - Thinking of you today. Hope your appointment with the GYN goes well.
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Me too Shutter, you have been on my mind today. Sending all the good karma I can muster. Fondly, SUE
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Pwilmarth- I hope you had a very Merry Christmas, and eveyone else as well.
Mikarae and Sue - so kind of you to remember. Unfortunately my appointmeat was pretty frustrating and useless. Who has time for fluff appointments? It was almost about 45 minutes after my appointment time when I finally saw the doctor and she didn't look a day over 18. She hadn't looked at my chart, or pulled up my scans or ultrasound results, even though I made clear that they were the reason I was coming in when I made the appointment. In the end she said she would to refer me to an Oncology GYN, which is what I wanted in the first place, but I guess the only way to get in is to have a regular GYN refer you. It is starting to look like they may not be able to do the ovary removal laparoscopically because of the size of the "neoplasm", which is what I was afraid of. I know it is silly but I worry about the amount of time I'll need to take off work. And there is still the question of a possible mastectomy and also whether or not the bone scans show progression. A rescan will probably be Feb or March. Ugh! If you haven't noticed, I don't do well with uncertainty.
I'm finding myself shocked and saddened by the loss of Dunesleeper and Freebird. I was a heavy user of the Bone Mets thread when I first came to BCO, and they were both dx just a few months before me. I had fallen off that thread, so didn't realize they weren't doing well. I feel so lucky to be HER2+ and to have the options we have.
Last year at this time we had a going away party for a friend, and a former boss of mine cornered me and talked my head off about all the people she knew that had died of cancer. She basically acted like I was on my deathbed. At the time I was wearing a wig and still limping. Tonight the same friend is back in town and the same people got together in the same place. You should have seen her jaw drop when she saw me stroll in! It was awesome! I wish it could be that way for everyone.
Happy New Year everyone!
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Happy New Year Everyone!!!
Shutterbug - I'm frustrated along with you. I hope it won't be long before you see the oncology GYN. Waiting is terrible.
I am like you and always worry about time away from work. Next week I am going to begin the search for a part time assistant so I don't always feel guilty about having to be away.
I too was gutted by the loss of Carla and Charlene. Their passing really hit home with me. Like you, I followed the Bone Mets thread and felt like I knew them. I'm reminded that our lives are so fragile and dependent on treatments working.
Love your story about your former boss! Hopefully, she learnt something.
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Sutterbug, you have been on my mind. What a useless Dr. Seriously, she should have been prepared. We worry and think about our prognosis and treatment and when we leave they just go for lunch. There is no excuse for that Dr.'s unpreparedness! I saw my MO today and a resident came in instead. I had some questions about my THP scheduled for the next day, being number 8, I was wondering if was my last taxotere. I had assumed it was although scans will be next week. She obviously had not read my chart and said, "Well with metastatic disease we give taxotere for along time, one woman has been on it for two years." I said, "Well she must have been HER2- because usually taxotere is dropped and HPis continued for life." Now I'm confused and mad.
I hope you get an appt ASAP, but still wonder why that OBGYN couldn't help! Who says you need a oncology GYN!
Hugs and love!
Barb
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Thanks everyone. I keep telling myself that I guess they aren't too worried about it being cancer since they are dragging their feet so much, so maybe I shouldn't be worrying so much either.
barb - I hope your scans are good and this is your last Tax. Don't listen to the nurses, sometimes they think they know everything. Please let us know the results of your scans. I'll be keeping my fingers crossed for you!
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Hi,
Barb, I am on THP also. Just finished #9. My MO said, they do 1-3 treatments then scan to check response, then give 4-6 and check response, if scans show progression or stable then taxotere is stopped but if there is continued regression and the patient is still tolerating taxotere well, then 7-9 are given then scans to check for progression, stable or regression. I recall her saying she would stop after 12 and switch to tamoxifen, H&P. After 6 treatments she told me it was my option to stop at anytime because taxotere is hard on the body. I'm not sure if the protocol in Canada is different. I like my MO and think she is smart and I go to MD Anderson which is up to date on treatments. Hope this helps some.
Shutterbug, I feel for you. It's hard when are worries are not the priorities of others. Hoping you get everything worked out soon.
I follow the bone mets thread and post there more often. We were all really surprised and saddened by Dune. She really didn't give any indication she wasn't doing so well, just some breathing problems. The loss of her was really hard on so many.
Hope everyone has a good day today.
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Hello HER2 Friends!
I was just diagnosed with mets to liver, lungs and bones (a spot on the hips and on one of the lumbar vertebrae). I had been 8 years out from my original stage 3 diagnosis, but I guess HER2 had other plans. I just had my first treatment today of Taxol, Herceptin and Perjeta. I had both Taxol and Herceptin last time and tolerated them well, so I hope the same goes this time. I was offered the every 3 weeks Taxotere, but I've heard that was a little harder to handle, so I'm sticking with a known quantity. My oncologist is very optimistic about this combo of these three drugs. Said she has seen some amazing things. I'm also encouraged by your stories. Thanks for sharing them, and I'll do my best to share good news as well! I hadn't heard of a HER2 vaccine, but there is so much exciting new stuff happening in this realm.
All the best to you all!
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Welcome DG. I was dx de novo Stage IV, so I can only imagine what a shock it must have been for you to be facing this again after 8 years. I agree, there are many many reasons to be optimistic. My oncologist always tells me that some women can do well for years on these drugs, and I hope to be one of them. Hopefully there will be more drugs out there when we need them. I've heard of two vaccines in development for MBC, NeuVax and GP2, but I believe the trials are still in early phase.
I hope the Taxol is easy for you. Has your doctor said how many rounds he would like you to have? I did six rounds of Taxotere and tolerated it pretty well. H&P alone is pretty easy.
Ladies, I have an appointment with an oncological gynecologist on the 27th. I finally feel like we are getting somewhere!
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Thanks shutterbug! Yes, it was a big shock to get the mets diagnosis after eight years, but probably not as much of a shock as starting out the gate with mets. I'm sorry you've had to be traveling this road from the get go. Glad to hear you are tolerating the HP well. I will be getting 12 weeks of the Taxol. Every three weeks during that time I'll get the HP as well. I will not get another scan until those 12 weeks are up or it might even not be until 24 weeks once I'm done with four rounds of every three weeks with the HP. The nice thing about doing the weekly Taxol is that the dosage is smaller. I did go neutropenic last time and had to get Nuepogen shots each time to keep my counts up after that, but we will see how it goes. At least this time I won't be starting Taxol after having my body ravaged by a dose dense AC regiment first and mastectomy surgery. Crossing figers. Glad to hear you have an appointment soon! Good luck!
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Hi there!
I'm new to this thread. My Mom, 71, was diagnosed with ER+, PR slightly +, her 2 + on 12-12-15. She was given RT to the lumbar spine. Started on Arimidex, Zometa, and Faslodex. Monday she starts Perjeta and Herceptin. She has extremely extensive bone mets. She is in a rehab center now.
I'm worried and sad....all the time.
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Dear Nik: I am so very sorry that your mom and you are struggling thru this just now. There is not a one of us here on these boards who hasn't felt as you do - we are all well acquainted with sadness and the fear. Please know that we understand and we care, and will help to lift you up. Hope is on the way.
Your mom will begin what is an excellent protocol. Herceptin & perjeta (sometimes given with taxol as well) has been an excellent treatment for knocking BC to the ground for many of us. Our tumors have stabilized, shrunk and in some cases have disappeared altogether. So fists up, my dear, get ready to fight and win.
Sending good karma, SUE
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The moderators posted an article: "If Chemotherapy Before Surgery Destroys All Breast Cancer in Lymph Nodes, Survival is Better, Especially for Women with HER-2 Positive Disease." Link is at the bottom because otherwise it shortens itself and breaks. Basically they did a study of Stage 2 & 3 HER2 positive women who had neoadjuvant chemotherapy, and found that if it killed their cancer in the lymph nodes and the breast, the 10-year progression-free survival was something like 90%. I had neoadjuvant chemo with THP that killed the cancer in my lymph nodes, my breast and my liver, but I am Stage 4. I know it's not the same thing, but I believe this finding also probably bodes well for those of us Stage 4 types who have a good response to first-line neoadjuvant therapy. I would be interested in the opinions of others. I know there are many of us out there. The article does say that, if you don't have a complete response, the odds are still pretty good.
http://www.breastcancer.org/research-news/survival-better-if-neoadjuvant-chemo-clears-nodes
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Sue,
Thank you for your reply. I needed it today badly. All day I have been crying. I am usually strong when I visit my mom at the rehab facility but today that was even hard.
I was told today that because of her immobility and fractures that taxane chemo would be hard on her. So her oncologist wants to save that for progression. Her oncologist hopes that in the next 6 months her condition improves. So for now Zometa, Arimidex, Herceptin and Projeta.
Prayers and hugs to all,
Nikki
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Hi!
I am new to this thread. I found this forum and I'm glad to find that so many in my situation is doing so well. This is still new to me, even though I just got my 12th round of Taxol this week and 4th of H&P three weeks ago. No side effects other than hair loss and low on energy.
I dont know yet if I need surgery, hopefully I will get som answers about the treatment ahead from my doctors appontment on Monday. Very exited to see the new met scans from my liver and breast.
//Zula73
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Hi Zula73, welcome to BC.org! We're so sorry for the circumstances that bring you here, but we're so very glad you've found and joined our community.
As you can already see, members here have a ton of advice and experience to share, which we're sure you can learn from! If you have any questions for us, please don't hesitate to reach out via the private message function, we're here for you!
Let us know how it goes on Monday.
Best,
The Mods
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