Perjeta/Herceptin/Taxotere
Comments
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I just found this board yesterday. It has really been God sent.
My partner Veronica was DX.on 7.31.12. Got mets and HER2+ DX on October 5.
I've been living and working in "flight mode" since mid July.
Reading all the support here has stopped that. I actually slept last night.
Veronica had her first infusion of Perjeta, Herceptin and Taxotere on 10.12.12
Still feeling great... Waiting on those SEs.
I'm so grateful to have found you all. I began reading posts at work yesterday and sharing them with her last night. Looking forward to sharing everyone's progress. Bare with me, there's still A LOT I'm unclear on, but trying to pick up on what I can.
Thank you all so very much for showing me capable women... DEALING with their disease.
My name is Carla, my partner Veronica is my survivor and heroine.
Glad to meet you all! -
Welcome Carla and Veronica....so sorry you find yourselves here ...this board is so helpful and everyone on here is awesome and supportive...hoping for minimal side effects for Veronica....I go for tx 2 tomorrow and am praying for minimal se as well
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Thanks aic!
While none of us are happy to be here (in one sense), sure glad to have found you all.
Stay strong and we are praying for minimal Se for you as well! -
Thanks, I'm glad you are tolerating this round better. I hope to be better prepared next time too with meals made, sons schedule planned out better, give house good cleaning and laundry done before second dose.
I made it out of house for an hour today!! Lomotil, Imodium, depends and nothing to eat or drink but was nice to get some sun. We bought mums and pumpkins. Major accomplishment since I started this.
Thanks for the replies. At least I'm learning what might be normal, the never ending BIG D was really starting to scare me. -
Ladies, I pop in from time to time to see how you do with this tx. I am saddened to hear about Tish and the c-diff. I'm kind of amazed they are keeping you on the chemo with that disease. I can't imagine getting rid of it with white counts down, but maybe yours aren't? I had to stop all chemos for a few months until I got rid of it.
It almost killed my colon though, I had pseudomembranous colities and they thought toxic megacolon so I had it about as bad as you can get it without dying. Horrible, horrible disease and I feel so bad for anybody dealing with it.
I still take culturelle and saccharomyces boulardii for it and eat a yogurt every day. You have to completely bleach everything, the spores aren't killed by soap and water. And, you have to wash your hands until they are shriveled.
There is a new drug called dificid for recurrant c-diff. You might look into that if you have to get back on the vanco.
I'm excited about this new tx but always sad to hear about c-diff. Hospitals need to do more to control it. I am really afraid of going back to hospitals now, and I can't take antibiotics anymore, which is not a good thing when you are a cancer patient.
Glad to hear some of you are responding and I hope that continues!
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kelly, don't give up on it. i was the exact same way. my first treatment was the worst i too ended up in the hosp for a week i had fluid in my left lung that turned to pnomina because imy resistance was so low. they gave me anitbiotics and fluids. but being in the hosp. for a week, i got c-diff. lucky me. i know i would be doing muich better if i never would have gotten the c diff. I got scanned last week and my scans were great. so i guess all of this is worth it. I understand the mom thing too. my kids see me laying on the couch all of the time. They just asked me this past weekend, "how can you stand being in the house in this room" I can't stand it. i hate this so much! I finally got to see my youngest son's football game this past saturday. i was only there until half time but i made it. i hope you start feeling better!!!
michele
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Michele,
Thanks for responding. My mom had cdiff. I'm so sorry you have it. You have certainly been through the ringer.
I'm so glad you made it to your sons football game. It felt good to be out for an hour yesterday. Even if we just did farmers market bc it was close and had bathroom. Have happy pics. : )
Even more excited that you had good scan results. Does make it worth wild.
Not sure when we will scan my onc does 9-12 weeks. Study I was just on was every 6 weeks. It's been a year since I did pet scan.
I hope you continue to feel better and keep getting good results.
Kelly -
Welcome to Veronica and Carla and Shaysmom.
Most of us had a rough go with the intial tx. I spent 5 days in the hospital with high fever and dehydration. The following tx have went way better. Still some pretty intense Big D days though. No longer getting fevers but get a nasty acne like rash on my scalp a week in and it takes it 2 weeks to heal- so by the time I am getting ready for my next tx it is almost finished.
I go for #5 tomorrow-I must say I am really tired of chemo-I am thrilled at how well it is working of course-but tired of feeling like an old woman. Done whining-can't say that stuff to the family so you people have to-sorry
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Lilylady,
Good luck of number 5 tomorrow. you have only one left after this, correct? Hope you get a break.
Welcome Kelly, Veronica and Carla.
The first tx is the hardest and then it gets much easier for most.
I will go for tx 6 next week. I am still waiting for insurance to approve my scans and will have them as soon ins auth comes through. Hopefully I will get the scans on Monday. This will be my second set of scans on perjetA.
I am surprised at how crappy I feel this week. It almost feels like the fatigue from the first tx. I am unable to even get out of bed today. I felt ok till last week. Is anybody having bad neuropathy? I have broken dishes a few times already because of my fingers. -
Today is really Veronica's first day of SEs. Her first round of chemo was last Friday. She's feeling flu like today. No fever though, and no Big D. So far, so good.
I'm PANICKED as my assistant at work is on vacation, and I'm there solo. Praying no need to be seen from symptoms this week.
She has her first set of labs on Friday.
I want to thank you all again so much for sharing your experiences. I'm learning so much.
Funny... I'm the one feeling helpless, panicked and in tears all the time. SHE'S the one telling ME that it's going to be Ok.
The courage and optimism on this board is amazing. I'm proud to be posting/reading with each and every one of you.
Good luck on your upcoming infusions, and a HUGE hug to all of you. -
Just got home from#5. We have decided to do only 6 with the Tax so one more yucky one to go-plus getting thru this one of course. Can't wait to be done with it. Next scan at Xmas so we will see what happens. He was pleased with my counts-but not enough to get put of the Neulasta. I haven't had any problems with it but have faithfully done the Claritan each time. Heading outside to cut the grass and work on organizing the garage for winter. Got the steroid buzz going to trying to make good use of it. I return to work next Thursday-that gives the worst of the Big D days time to subside. I would rather the stuff hit right away instead of waiting almost a week.
Formygirls-sorry you are having some tired days but I think it is totally expected for what you have been going thru this whole summer. The SEs from the Tax are cumulative and like you said you are headed for #6. Give yourself a break!! I have a little neuropathy in my feet but so far nothing in my hands. My worst complaint is this dang eye twitch thing. It comes and goes but it is quite annoying. You never did tell me what kind of engineer you are.
Carla I know it's hard but try not to hover. I think it is almost worse to be the one watching. Since you are in the early days it is very intensive but it will get easier. Try not to always be watching or asking -sometimes I feel like my parents have my entire network spying on me and reporting back to them. When I take a too long nap or not eating enough or my grass is longer than usual, stuff like that. I do keep some things to myself to keep them from worrying but for the most part I live a normal life.
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ok girls, question for you - how many of us are on this site and taking this combo?
michele
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I saw a couple of people complaining about eye twitching.
I just spoke to my onc bc apparently my potassium is really low from all the diarrhea.
One symptom of low potassium is twitches. Just an FYI.
Things are improving slowly. Still BIG D every time I eat. Been almost a week with it. But I'm feeling slightly better. My hair started failing out in clumps yesterday. Today my 12 yo son was really upset in school. Apparently he is very worried and told his teacher its been a bad two weeks. So I made sure to be changed and downstairs when he got home from school. Got him a snack. He said mom, you seem more energetic. Tonight our kids and parents support group through Gilda's Club starts again so I'm going to put on my depends, take meds and not eat or drink anything and head out. -
Hi ladies. Just had my fifth treatment last week. Honestly, it is getting better, and I feel much better, but stil lthe big D. It seems from about day 3 until about day 12 everytime I eat I have to be in close proximity to a bathroom for multiple visits. The interesting thing is that I have gotten my appetite back and the food tastes much better, but the result is still the same. After about day 12 the D seems to ease up somewhat and I can actually have a meal and not be in in the b-room within 10 minutes. Just wondering if everyone has had a similar experience. It's very annoying to be hungry and yet afraid to eat. No matter how many anti D meds I take, the result is still the same until about day 12.
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I am so sick of the taxotears!!! My eye dr said to use eye moistening drops because it was actually the fact that my eyes were dry this telling the brain to make tears. Anyone have anything else that helps? I guess wearing contacts doesn't help much either.
I went on a field trip with my son today. One of the other moms on the trip is a nurse and gave me the, "my best friend is 39 and has breast cancer and it was gone then came back and now she isn't supposed to make it through the week" story. Punch in the gut. I don't want to be on denial, but my scans are good, nothing is "active", I have four kids, I work out every day, and I jut don't feel like I am dying and cannot accept it. I don't feel like I have to because I have faith in my God and hope in the intelligence He is granting researchers.
Sorry- needed to vent to the only people who truly understand. -
Of course we all understand. Listen Kingcour, everyone's situation is different. You have to tell yourself that you are not that poor 39 year old woman that is not going to make it through the week. You feel good and your scans are good. Hers are not good. Many people live with metastatic disease for many years and you will probably be one of them. On the other hand, I'm sure we all know women with metastatic disease that haven't done as well as you are doing. I have been Sage 1V since 2001 and still fighting the fight.
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Kingcour, some people are so rude! It seems like almost everyone that has found out about my mother being stage iv w mets to the liver and abdomen feel inclined to tell a story about someone they know that died from cancer. HELLO AS*WIPE, duct tape your trap already! It begins paralyzing me with fear all over again! Anyhow, my mother had her second treatment on Thursday last week and her side effects seem much more manageable this time except for the diarrhea, but even that isn't as bad. Her first treatment had her in the bathroom about 7-10 times per hour - and i'm not exaggerating one bit. I just hope this treatment will work for her since she is being a stubborn mule and won't stop drinking and smoking... sigh....................
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tishy34 - I have to say I am not on this regimen. I was interested in the new drug and found this site so I have been following it almost daily. I take Xeloda and Taxotere combination, will get my 3rd Tax treatment tomorrow. The first one was awful, the BigD, nausea, could only eat peanut butter, got dehydrated and had to have fluids two days so the 2nd treatment he cut the dose some and I handled it well. He said if I handled it well he may increase it tomorrow. I do not know how many treatments a person can get of Tax, I need to ask my onco.
kingcour - I know exactly what you mean about people saying, "I knew this person that had it but she died", I had breast cancer 20 years ago, I had just turned 40 and I had people say that to me, then I had a neighbor come over and she said she had had it 10 years before, well right there I had a different outlook, I thought to myself, some people do live a long time. I was diagnosed over 3 years ago with Stage IV, I had my gallbladder out and there was breast cancer in the gallbladder then after scans they found it in the bones, ovary, skull, urethra, and other places in the stomach area, did the Femara for 2 years. Did radiation on both hips. A year ago it had spread to the lymph nodes in my stomach so started Xeloda, in September they found it in the Omentum and that is when I started Taxotere along with Xeloda. I will have scans next month to see if it is working. I asked my onco 3 years ago what my prognosis was and he said, the same as last time, I said you can get me 17 more years and he said yes, and probably even more. Every year they come out with new drugs so he said every year we get, there will be something new to try. I have had him as my onco for 20 years. Try not to let people get to you, I think sometimes they do not even realize what they have said until it is to late.
I know I am not on this regimen but I hope everyone that is has great results. I will continue to check in and see how things are going. I have seen people talk about tax, is it taxotere or another drug like Taxol I do not know what drugs are given in this cocktail. If it is Taxotere is that the one that gives you the most trouble or is it all of them together? I am just curious and wondering, if I should have to take this at sometime, I like to know the options and side effects. Thanks everyone.
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Thanks, ladies. I knew I would feel better after hearing from you! Pearlady1... I am so inspired that you have been living with this for so long. I just want to raise my kids! Truthfully, I would like to be an old grandma too, but one thing at a time, right?
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I can't say it any better than you ladies already have, but I am so glad we have each other.... hugs and prayers to all of us
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Jeanieb2: Taxotere is what we are referring to. I noticed in your sugbature that you were her2-. You must be her2+ to get this combination if taxotere, herceptin, and Pertuzumab.
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Kingcour it sounds as if you are doing well, so you have to be thankful for that and feel confident that you will be around to raise your kids.. Last year my onc told me that the good thing is that there are new drugs all the time . When I was diagnosed with Stage 1V 11 years ago, there were not nearly as many as there are now. Just think that each year we stay ahead of this monster, there are chances for new drugs. Can you imagine if we all would have been diagnosed prior to hercepton??? Now with TDM1 in the near future, the outlook is brighter.
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Agreed AIC. Prayers and positive energy to all.
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Mom just came to do bloodwork today. Had a treatment a week ago. They are giving her iv fluids from the diarrhea. Longer trip to office than we thought....
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True! Very thankful and in a much better mood today! Well wishes of good health and blessings to you all!
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kingcour - Thanks for the info. I did not know you had to be her+, I just did not know much about this and thanks for letting me know that and it is taxotere you are referring to. I still like to check on you ladies to see how you all are doing. Hope it goes well for everyone.
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It's almost 2am I've had the Big D this am, afternoon and now almost all the time since 5pm.
Its been 10 days of depends and living in bathroom and I'm so sick of it. Really at end of my rope. I need fluids. But I can't be away from bathroom the 45 minutes to get to the onc to get the fluids. My BUN, Potassium , Albium, calcium and protein are all low.
I thought it was a tiny bit better seemed to just get it if I ate but now its all the time again. I'm so tired. I want sleep but can't with my issues. I really want to skip the taxotere next round. I'm down 10!pounds. -
Shays mom,
Sorry you feel so crappy with the big D. Please try and get the fluids as dehydration can be a real problem. I assume you are taking lomotil and it is not helping? That is what works for me. I took it regularly for a few days--4 times a day. My diarrhea was very bad with tx 1 but it has gotten better. With tx 1 because of diarrhea I did not eat much but just drank a lot of cocunut water and gate rode. I hope you can get some sleep tonight. -
Yes, lomotil and Imodium have not worked at all. I read people take calcium bc it constipated? Mine is low so I don't think it will hurt?
Thanks for listening. This has been the worst.
They started me on potassium pills bc potassium is low from diarrhea and the one side effect is diarrhea!!!!
Normally when I'm dehydrated I feel my heart racing. I don't this time. It's mostly headache, muscle cramps and not urinating. I went we'd night 6pm and then didn't urinate again until 930 in am. And when I go its a little bit. I only urinated twice yesterday and twice today.
I know some are not taking the taxotere. Are they having good results?
Kelly -
Shaysmom I know the difficulty with the big D. I take limotil and immodium and neither one helps on a really bad day. I was recently introduced to an all natural product by a pharmacist, called Esdifan. I think you can buy it on the internet if you can't get it locally. Like all natural supplments, you have to take continuously and it does take some time to kick in, but I think it has been helping. Its not that cheap since you have to take 18 capsules a day, but anything is worth getting rid of this D. The supplement contains Calcium, B12 and Zeolite. Hope you can get some relief from this as it's really frustrating.
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