Perjeta/Herceptin/Taxotere
Comments
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I am not totally 100 percent yet that I will definitly be on Perjeta. My Onc told me the TDM1 drugs eat only the bad cells and Herceptin I have been on for almost 2 yrs with no probs so I may just be put on Perjeta because its totally stronger then herceptin. I am not 100 percent sure yet how she will handle but she is the best and I have much faith in her. I did 12 txs of taxol 2 yrs ago with herceptin as well as the good ole red devil A/C and I became NED then I have had a couple reoccurrances so now I am on taxotere for 6 mos which I have done 2 mos of so far then once NED hopefully again I may be put on Perjeta alone because its stronger from what I hear. I will find out in 2 weeks when I go for chemo some answers. Has anyone ever been on just Herceptin? I was for like 6 mos alone. It was great . Just a 30 mins infusion and done. So thats what I know for me at this time.
Anyones input would be great:)
God is good all the time:) Keep the faith!
Stage IV is a bear and I have been dealing with it since dx Oct 2010. Hope to get a long break with one of the new TDM1 drugs when the time comes. I accept this is my new normal life forever. I will say Taxotere is some strong chemo but not not as bad at all as A/C! I have had 34 rads as well as 4 major surgeries and its all been non stop for 24 mos. I am pooped but still fight the fight. I have lost my hair and eyebrows and lashes and all grew back totally fine. My hair came back beautiful and thick. Now I am totally thinning in my hair so I got it buzzed totally short and its still thinning. Dr said I should not lose it so I just go with the flow. I hope the next time it grows back it stays. I do no health is first. I was back to having my old hair back and colored and several haircuts and starting to get some energy back afterall the surgeries and rads and then boom Taxotere. No energy and just real tired and totally sensitive stomache. I love the comfort of home when I feel like I do with this all. Plus I do not want to get any infections from sick peeps out there and end up back in the hospital . NOWAY.
I love to shop from home!!!! LOL
Hugs and Prayers to all my pink sisters:)
Erica
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I was on just Herceptn after finishing my TCH and it failed pretty quick all on its own. He did say at that time we would add it back in at some point. Sometimes combining it with another drug makes it work again. I gave him a big article about Herceptin resistance to su study at our last visit-it was written over my head so hoping for a btter explanation.
Surly-glad it is going better this time. I know what you mean about the emotional side of it. I was SOOO not prepared for it to knock me down for 2 weeks. I told my doc-"You left town and I folded like a cheap lawn chair". I am sure mine will go better this time also.
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Jodi-forgot to say good luck tomorrow in the chair. I follow you on Tuesday. Hoping for smooth days for you
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Good luck to all of you. Love reading all of your posts. This group seems to have a lot of astute people who know how to word things well as well as being courageous troopers. (And yes I know you don't have much of a choice). But you do it the best you can. I feel bad to hear about how much this is all beating you up but encouraged to hear about your good days. Wishing you all the best!
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Hi from another Lily
Started this brew as well on Aug 3rd. I have no words to describe that first week after...Thanks for starting this thread, so we can push each other through.
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Rehula-welcome.Glad to add another voice to this new journey. I guess that means you will be getting your second tx at the end of this week. We have 2 ladies that just completed their second tx. 1 said it was marginally better, the other says it has been quite a bit better. Another lady is getting her first tx roday.
I go tomorrow for my 2nd. I had a terrible time and I had never really been sick from chemo before. I am hoping it was the huge loading dose that laid me low. Going in with positive thoughts that it won;t happen again. My 3rd week was as normal as could be and I gained back 5 of the 15lbs i lost during the first 2 weeks.
Post a few details when you get time. Like did insurance come through for you and what other chemos you have been on.
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First treatment. Went in at 8 30 am, got home after 3pm. I feel fine, but tired. I ate the entire time, big surprise. They gave me steroids, tyleynol, and bendryl pre emptively. I think I will take a long hot shower, one of my faves, and put on some fresh jammies. I don't go back for 3 or 4 weeks. YAY!!! oxoxoxxox
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Three days after my second treatment, the aftermath seems better than after the first treatment. So far few muscle aches. Just a little headache today. The nosebleed issue is gone, I think. The onc cut the steroid dose in half, which has helped with the sleeplessness and jangliness, but I'm out of whack still. Up until 3:30 a.m. this morning but unable to nap during the day on Sunday. My mind gets locked on a thought and won't let go and I obsess. Everyone reacts differently to steroids, but I've never had it like this. The onc strongly recommended getting ahead of the constipation issue and not wait for symptoms, so I started popping 4 senne tabs a day--Fri, Sat, and Sun--and had a glass of Metamucil. Those must have made a difference, because while I'm not "normal," it's so much better than last time, which was excruciating. For those who are just starting out, think about that if you're on anti-nausea meds. And drink a ton of water. Also gatorade or juice.
For me, it's still an emotional struggle too. I feel like I'm going to get very worn down by this and feel uncertain about what could possibly be next. When do we get the nice, happy, cozy chemo regimens that make you feel like you've been at a spa for a week? It's hard to keep slogging some days. But I'm also grumpy about work, so that isn't helping matters.
Sorry to be a downer. The good news is, you can't fall out of a well.
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I'm new to the site, and have been reading the posts on this board. I was just recently diagnosed in June with extensive Mets to the bone marrow (throughout head to toe) and bone (skull, right leg, hips, ribs, and right shoulder), and I began Taxotere/Herceptin/Perjeta on 7/23/12. Other than the nose bleeds, runny nose, and fatique, I didn't find the Taxotere to be all that terrible. I did lose my hair a lot sooner than I expected - it only took a couple of weeks. What got me was the way the chemo made my blood cell counts bottom out. The mets to my bone marrow is extensive, there's basically more cancer than marrow. So my wbc's tanked and I had to get a shot of neulasta, which knocked me on my butt for a couple of days - the bone pain was terrible. Then my rbc'c took a nose dive. Then my hemoglobin and platelets got so low that I had to get a blood transfusion.
I went for my 2nd treatment today, but my platelets still haven't recovered to a safe level yet. So my onc said my best bet is to stop the chemo, because it will just keep making my blood counts bottom out. We're going to have to wait until my platelets recover enough to make it through surgery, then we'll remove my ovaries. Until then, he gave me a shot to shut down my ovary productiion.
I've been a bit bummed out, because I heard all these wonderful things about the Perjeta and I was looking forward to seeing the results of it. I had no problem getting approved for it, as my previous chemo treatments in 2006 didn't involve Herceptin - so this would have been like a first line treatment. Also, I had been having pretty rough bone pain for the last several months, and had begun to feel a bit of relief about a week after my treatment - I'm hoping the depletion of estrogen will give me some pain relief as the chemo did.
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Nothing new to add - just letting you know that I am reading and learning, and sending as much good karma your way as I can conjure up. Keep on truck'n, ladies! SUE
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Day 2, and I feel fine. Like I never received the new treatment. Feeling groovy, and of course hungry!! Hubby is picking me up Starbucks blonde roast, and I can't hardly wait!!! Hey, TMI, but no constipation!!! I hope everyone's day is a good, or at least better than yesterday!! xoxoxox Jodi
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I am new to this talking thing. I found out I had cancer end of Feb. 2012. // Did first round of chemo of Taxol/Herceptin 12 wks every week. Had a month break for my heart. Now back on them once a week every Thursday & just added perjeta approved on my 2nd treatment last Thursday. Which also was told last Thursday I have progressed to stage 4 BC. Other treatments went fine. This time I don't understand if its just nerves, difficult round or combo of both.
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Hi Tilliegirl and Kellygrl. Sorry you both have been wallopped. There just is nothing to say--that I can think of. But hang in there! I'm sorry your counts took such a hit, tillie. I hope you get some relief and some new options soon.
Kelly, from your last sentence about "nerves" I take it to you mean you're trying to figure out if you're having side effects? Since you had treatment 5 days ago, I would say you're probably experiencing the bad part. I had mine on Friday and am not as bad off this week as after my first one, but it really threw me. The aches set in today and I've been swinging between feeling OK to being hardly able to stand up. Had to lie down several times just to get back to semi-normal. I just wasn't prepared for these SEs, so I recommend just waiting it out and you should improve by Thurs or so. I guess if I didn't feel any effects, I would worry it wasn't working. It does get better each week. The harder part for me has been beating back the desire to let myself get depressed. It's really hard to find joy in anything at the moment or to find distractions. At the same time (sorry, everyone!), if I spend too much time on the discussion boards, I get too sad reading about all the heavy stuff people are managing. I have to take a lot of breaks from it. But I don't think I could manage this regimen without being able to compare notes with others and reading about how others are staying strong.
Lilylady, how did yours go today? I hope well. Check in soon.
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Welcome Kellygrl-our group is growing so the more info the better. Goes without saying we are sorry you have to be here but I am so excited to be in on the beginning of this great new drug.
Tilliegirl-sorry to hear about your counts. I got my second tx yesterday and found out mine are in the toilet also so I will be going for Neulasta tomorrow. Last summer on TCH most of the girls got it with every tx but I never had troublekeeping my counts up. I do remember that the fix for the bone pain was to pretreat with plain old Claritan-they swore by it. I am going to read back and see wether they took it the day before or day of. I bought me a box yesterday-$18-but if it works it will be well worth it.
Jodi-glad it is going so well for you. I too have not had the constipation-but then I never do it is always the Big D for me. I am a champion at controlling that. I also love your upbeat attitude. I have been following the brain mets sisters for a long time so I knew you from there.
Got my second tx yesterday and my onc is not optimistic that it will go much better than the first. I however am thinking postive thoughts. He tells me I am the toughest patient he has so he was shocked at how bad I collapsed. I am going for the Neulasta shot tomorrow and fluids on Thurs and Fri as a kind of prememptive strike. I am also going to try to be way better anabout taking in fluids. My counts have never been this low-he wants me to not go anywhere or if I do wear a mask. There is a nasty flu bug floating around town right now-2 of my brothers have had it so I will just stay home.
Next Tx is Sept 4 then a scan 2 weeks afterward. Ins co still not budging on paying so there is a shocking amount due on the bottom of my chart. They have told me don;t even look at that it doesn't concern me-so OK I am going with that. I am going to get the most out of these first 2 days-steroid rush just in case the wheels fall off again.
Formygirls-how are you doing?
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Hope the scans show incredible results, lily lady and that your insurance company decides to cover it!
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hi ladies. sorry i haven't been on in a while, i was in the hosp. for 7 days. my lungs filled with fluid, but it had nothing to do with the chemo because they were filled before i even started the new chemo. anyway, i did get pneumonia from it and that was my problem why i had no energy, well one of the reasons. i was supposed to get my second treatment tomorrow but since i was in the hosp and sick with all of that they want me to take another week off and get my energy back. that is totally fine with me. i am so glad to be home and feeling better. they drained the fluid and boy what a difference. this new chemo should keep my lungs from filling up again. my hair started to fall out while i was in the hosp and it still is. i really don't want to clip it down so i'm just not going to do that thiss time. i have an apt for my wig for saturday maybe i'll do it then.
michele
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Lilylady - I did take the Claritin and Tylenol Arthritis to prepare for the Neulasta. It's best if you start taking it the day before you get your shot. It did help quite a bit, but the pain was still pretty intense. Basically, instead of writhing in pain, I was just glued to my recliner for about 24 hours - from both the pain and the fatigue. Good luck to you!
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Hey there everyone, had my first dose yesterday of Herceptin/ Perjeta/Taxotere. Headache today, mouth sore, tastebuds shot. The steroids have made me have that lovely sunburn glow, looks like I spent too much time in the tanning bed. Last night though I took a full Ambien along with the Valium for the muscles spasms around my L1 met and slept like a baby. Rest is key girls along with hydration...tell your docs you need meds for sleep and pain if you need them. Worst case is we have some addiction problems and if we are lucky enough to be NED for any length of time we can work on that then. Glad you perked up the 3 rd week lillylady. I have to return to MD Anderson Sept 24 to see if I have to have spinal surgery in the midst of this. I'll keep you posted. Good luck everyone....heads up, gloves on!
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Wecome Warriorprincess-I am familiar with E-town. My best friend lived there for about 3 years. Are you being treated locally with MD anderson telling them what to do? I see you are Her2- and I thought the Perjeta was for Her2+ as well as the Herceptin. Interesting. My tastebuds recovered mostly during the 3rd week so I was able to get back on some of the weight I had lost.
Tishy-sorry to hear about your fluid and pneumonia issues. I did 4 days in the hospital myself during week 2 and it was no fun. I hope the treatment will kick it's butt. Is the fluid a result of lung mets? Mine have never given me any problems. Taking an extra week in between tx will probably be a good thing.
I got fluids as well as my neualasta today. More fluid tomorrow even thought I told them I felt fine. Since I crashed over the weekend the first time they want to be proactive so I did it without protest.
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Lilylady, my original cancer was Her neg, but when the tumor in my spine was biopsied it had changed from ER/PR+HER2- to ER+/PR-/HER2+. At MD Anderson my onco now thinks that I may have been a false neg at initial diagnosis. I went there after my initial surgery and followed their treatment plan recommendation. I had my care followed here and in Louisville. Etown dropped the ball repeatedly with my scans I hate to say. Very devastating. But I will fight on as we all are. Enjoy the rest of your time till your next treatment and I'll keep checking in. Hoping not to crash week 2. Pushing all the fluids I can. Hold on everyone, its gonna be a bumpy ride I'm afraid.
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It's been 4 days, and my tongue hurts!! Like I drank hot cocoa and burnt my tongue. Owie owie.
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Wow-this group has really grown. I took a break from the board for a few days. Actually took my kids to Disney for three days. I feel awful and very tired today but so does the rest of my family. Three days in a theme park can do that to anyone. My 11 year old pushed my wheelchiat around.
I am getting ready for tx 3 on Wednesday. I think tx 2 was easier for me than tx 1. Side effects and diarhea were not as bas. Hopefully, this gets better every time.
I have a PET on Tuesday to see if this is working. Hopefully I will not have progression. Every scan since dx has been bad but my family is very excited about Perjeta. -
Have any of you ladies heard of Her2 mets to the ovary? I keep reading about bone, liver, and brain. Am I out in left field here with my diagnosis? I've been trying to find info on treatments and such for most of the day but, it looks like i'm just an odd duck. Hope you all have a sunshining weekend
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Welcome back from Disney, formygirls. Hope you all enjoyed it. And hope treatment 3 is even better than 2. Will keep my fingers crossed for good results on the PET.
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aformygirls-good for you doing the Disney thing. That kills a healthy person so for someone on major chemo to try it-awesome. Glad to hear 2 went better than 1. Like your family I have everyone hopped up on the Perjeta. I hope it lives up to it's billing. We aren't scanning til after my 3rd tx which is be Sept 4. it is scheduled for 2 weeks after that tx. We will all be anxious to hear your results. I am hoping if it works the damn insurance co will start to pay.
Warrior princess -sucks that they might have missed the Her2 from the beginning. I changed docs early on in my tx and it was the best thing that ever happened for me. Hope your week 2 goes well.
LoriKnous-I always thought it was breast, liver, lung and brain but I have seen lots of people talking about stomach stuff lately so it wouldn't surprise me that this crap can attack anywhere. Have they biopsied? I know lots of the hormone positive girls have their ovaries removed-is that a possibility for you?
Jill thanks for hanging with us. Glad to have such a positive voice in our group.
Jodi-what's up with the tongue thing-haven't heard that before but like we have aid nothing about this should surprise us.
I am on day 3 and have had my first ever Neulasta today plus fluids and decadron. Started with the fever last night but not as high as the first time. This time last tx i was couchbound headed for a miserable weekend. I don't see that happening this time. I feel pretty normal actually. I did take the Claritan for the bone pain but maybe I will be one of the lucky ones and not get it. I have opted out of helping move my niece back to college at eastern Ky tomorrow. They are using my truck and I put $75 worth of gas in it plus all the college supplies so I feel like I have done my share!!
Surly-you OK out there? Hope everyone has a good weekend. Ohio is getting a major weather break. High in the 70s all next week and sunny-hoping to be able to enjoy it.
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Hi all. A week after my 2nd tx, I feel pretty good. Fatigue is always there, but whatever. The only issue I'm having right now is severe leg muscle cramps during the night. I have to get up a half dozen times to walk off very intense cramps like charlie horses in the muscles on both the front and back of my shins/calves and in my feet and ankles. The muscles seize so tightly I sometimes can't get my ankle turned the proper way to stand on it. I end up giving up in the middle of the night and just sitting up on my computer. They only cramp when I'm lying down. So I'm not getting much sleep right now. Maybe the cramps are work stress related. But this same thing happened the first week after my first tx.
Has anyone else had muscle cramps like this and do they have any suggestions?
Have a great weekend.
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Surly-Have they checked your potassium? Since I started on prescription Potassium the cramps have gone away. I know what you mean about the ankle. Feels like it might even break when I am trying to press down on it. I also come down and soak in my tub in warm water. Next ime I buy a bed it will have a footboard where I can press my feet flat aginst it. When I jump up with the cramps both the dog and cat have to get up and dance around like it it is time to get up.
Glad you checked in. seems like everybody is having an easier time the second time around.
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Lilylady, When I asked the Dr. five years ago about the posibility of reocurance into the female organs he said NO. Here we are now with a "mass" on the ovary with the bladder fused to it. I was pre menapause then and now but, it doesn't look like surgery is an option. I am really thinking about another opinion at this point. See what happens when people have to much time on their hands. Thank you, I think i'm going to look into another opinion.
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You are a rock star lady! Glad you went. I had Aerosmith tickets for months and was dxd with this met 2 days before the concert. Had been a huge plan for my oldest son and I. So I loaded up on Percocet and went on to Chicago, you can't replace those memories, good for you. Hope your scans go well.
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Well I think I got away with it this time. Almost 6 days out and no real problems. Also had no SEs from the neulasta. A little wonky in my head and everything tastes like crap but no couch time-or hospital time either. Must have been that loading dose.
Hoping everyine has a good week coming up. I have to get some cavities filled tomorrow-dreading that. First time I have had a cavity as an adult. Getting a BMX didn't phase me but having some small cavitiesfilled has me quaking in my boots!!
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