HERCEPTIN and/or PERJETA Threads
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Freygea:
You never get done being a worrywart when it comes to this disease. It does get easier over time to where you may not think about it every second of the day. Benadryl is not my friend only at infusion time. They give it necessarily so that it offsets any possible allergic reactions from the THP you're on. I receive Benadryl every three weeks at my infusion time, and I'm pretty sure you'll receive it at your infusions as well, even after you finish Taxotere. The day of infusions I'm pretty much tired the rest of that whole day, but then the next day I get up and go about my business. These are powerful drugs designed to kill the cancer and keep it at bay. I may have a day or two when I feel more tired, but whether it is necessarily from H & P or it's an age thing, I'm not sure, because I'm busy all the time. I'm just grateful that the drugs are available at all. You'll get more used to it as time goes on. Best of luck to you in your treatments. Ann
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Freyga:
Benadryl is a sedating antihistamine. While it will help with the rash, it will also make you sleepy, drowsy and fatigued. My MO had me take Zyrtec (but only with the first infusion). It is less sedating than Benadryl. Best of all is Claritin which is the least sedating of all. While I was receiving THP, my sleep pattern got so messed up. I would be fatigued after the Taxotere, then they wanted me to take Zofran for two days after my infusion. The steroids I took would wind me up for the three days I took it (day before, day of, and day after), so when it wore off, I would crash big-time. By day 4 or 5, I was so messed up, I would go to bed at 7pm, then wake up at 1 am ready to go then crash at 5 am. I was still working and had to get up at 7 am to get ready for work, Then I would spend the entire day at work feeling exhausted because I didn't get a good night's sleep.
After the first cycle, I found that I didn't really suffer from nausea so I stopped taking the Zofran. That helped reduce the drowsiness and I stopped feeling dizzy and light-headed. I started using Benadryl and Melatonin to force my body to fall asleep and stay asleep. This helped me feel less exhausted in the daytime.
But, by my fourth Taxotere dose the fatigue was lasting longer. It took about 10 days for my energy level to rebound. I also found that the steroids were starting to bother me. I would develop a sour stomach on the first day I took them (before my infusion) and it was making me irritable and moody.
When my MO reduced my dose on the 5th cycle, much of this went away, including the fatigue. I still had a sour stomach from them steroids.
My MO dropped the 6th dose of Taxotere. I haven't really experienced fatigue since the last dose of Taxotere. I do get drowsy from the Gabapentin I take for neuropathy, especially if I take it with other pain relievers like Tylenol or Ibuprofen.
Part of managing this disease is learning how your body responds to each of the meds they offer you. I've always been a lightweight when it comes to drugs. We become more sensitive to these drugs as we age. Because I'm a nurse, I understand the side effects and I try to achieve an appropriate balance with the drugs I'm on. Some side effects I am willing to put up with and some I am not.
Talk to your MO about using another antihistamine. Sometimes, they offer Benadryl because it's cheaper than Zyrtec or Claritin.
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JC...I hear you about drains...absolutely awful! But they'll be out before long & you'll be able to heal completely. Wishing you pain free days. You've been through so much...hope you have a good support system. Hugs!
Oh K...I agree w/SUE...blood return is what all nurses focus on during blood draw & the switch from h to p. Hope your onc will address it. I think it's more than ok to let people know you're experiencing something out of the ordinary. Hope you get lots of summer fun in w/your darlings! We're swimming & blueberry picking tomorrow!
Mikarae...we've got hazy skies in Seattle from your terrible fires on Vancouver Island. Such a beautiful part of the world...hope they're cleared soon!!!
Carla...I'm seeing onc Wed & expecting a chat about just h. Mixed feelings but it would be a speedy trip!
Thinking of all...but I also am tired so signing off. I have the same question Teakie...is it h/p or age???? On h for the year 09-10, I didn't notice anything but normal...now, even after chemo my energy isn't normal...but I'm also going nonstop most of the time. Life is just busy...and I'm happy for that.
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Ronnie my girl, I know that you are thinking about your upcoming conversation with oncologist re: whether to drop the perjeta and just do herceptin. I would be a tad nervous too. Remember that these docs have access to All the information - that's their job, and what we want from them (what we pay them for) is their best guess. That's not to say that we don't get a vote too. I would be curious to know why he/she is headed in this direction and what the data shows, if anything. And if you don't like what the reasoning is, argue! We've all done that - HA!
When my navelbine was discontinued, my go-to position was that if I progressed, I could always go back on since I stopped because of SE's and not because I failed on it. For sure though, this felt like a gamble.
I know that you are well informed on the subject and also that you trust your doc. This sounds like a good conversation in the making. Either way darlin', we are here for you. Do let us know. Fondly, SUE
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Dear Mikarae, fires in your part of the world? Hope you and yours are OK. Fondly, SUE
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Hello. Yes, the last I heard 2 days ago was there are 250 fires burning in our province and still here in the southern interior no rain in the near future. Smoke fills our skies and lungs. It's so dry that everyone is scared to fart!
I am very fatigued at times and wonder if it is the HP or a side effect left-over from the Taxotere. My last treatment of Taxotere was 13 months ago.
RonnieKay - I agree with Sue regarding dropping Perjeta. I am also curious as to why your oncologist is considering dropping it.
Thank you all for the concern over the forest fires. Thinking of you all too. ~Karen
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PW you hit about every point I could think of.
The did introduce the additional dexamethason (2 before and 2 day post this treatment). My hands did not blister this time but i do have a red rash and the skin is peeling. I started on Zyrtec each am on day three post chemo and then use benadryl every 6 hours. I stopped the odansetron yesterday because as you note, it does cause fatigue. I do cheat and take a calriton as well about mid day. This does seem to help get me through that hump part of the day.
It helps just to know others have made it through these treatments with the same side effects and they are now just a icky memory. I really appreciate your post and will probably read it again later this eve when I start feeling irritated with the whole proccess.
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Hi there,
I am on Taxotere, Herceptin and Perjeta. I completed round 2 of 6 two weeks ago Monday. I have been doing pretty good with side effects, but on Sunday I was at Whole Foods and suddenly felt a weird pain in my right back/shoulder. I have had a kind of low-grade headache for the last couple of days (I finally took a Tylenol this afternoon and it's better). Both bone pain and headaches are listed as possible side effects of Taxotere, but I thought that the side effects would mostly manifest themselves the first week or so after treatment. I am now 14 days out. Thoughts?
sj
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Freygea - I'm glad you've found something that is helping with your SEs. Hang in there, it does get better!
Scrunchthecat - Welcome! Sorry you find yourself here, but I think you will feel right at home. In my experience with Taxotere the SEs came and went and changed with each cycle, usually starting about 4-5 days after the infusion. I would make sure the headache isn't from dehydration. That is exactly how I feel when I get dehydrated. Usually a few glasses of water takes care of it. If it persists I would mention it to your doctor. As for the pain, mine was usually joint pain and mostly in the hips. It was like a deep ache, almost like you get when you have the flu. Did the pain in your shoulder go away? If not, I would bring it up.
Good luck to you both. Hope everyone else is doing well and enjoying summer!
Mikarae - stay safe and away from those fires! Your fart comment made me laugh and laugh.
RonnieKay - I had a second opinion at a new institution yesterday (mainly for piece of mind and to have my info available for possible clinical trials) and she mentioned that there is a lot of debate right now about whether or not Perjeta should be dropped after a certain amount of time. She said there aren't any studies about how long it should be given because "Herceptin and Perjeta are both made by the same drug company, so they don't have any incentive to look into it". I'm interested to find out what they tell you.
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Scrunch...welcome sister..as always, we wish we'd have met under different circumstances...maybe a bunco game...but we will keep you under our wing & soon you'll realize your input will help us along too! I second Shutter's mentioning dehydration. I still, even on just h/p get a headache & sometimes shortness of breath when I'm dehydrated & trust me, if you think you've drunk enough...you probably need more! My team says to add drinks w/electrolytes, not just water, which is hard for me cause I dislike sugary drinks but try that. Hope ses calm down but you're getting into the thick of it & your body knows something wicked is going on-namely cancer killin!!!!! Get lots of rest too.
Oh Shutter..you're just what the dr ordered. I met w/my onc Wed & we decided to drop perjeta at my next appt, Aug 5. In April, he was ready, but I wasn't & we agreed to Oct..a year after dropping navel & being on just H/P. That changed w/our discussion and looking forward to being ready for possibly a vaccine/some kind of immunotherapy should the critters start growing again. I asked about what the research or opinions of other oncs is, and he said it's all across the board. Some don't want to change what's working, others choose to mix it up, thinking herceptin can/has done the job for a while and that long term perjeta use hasn't had time to be studied...or as your onc said...maybe won't be, due to one maker & success. It's a toughie, but our SUE, wisely knowing my dilemma, said it's important to trust those who're caring for us...and that put me into a good frame of mind to be open to his suggestion. I remember his saying that he chooses to act instead of react, when he looks at treating a person...which means sometimes he shakes things up a bit. He says it helps to stay ahead of the disease because it changes, especially as the time goes by. Ugh...sorry yo go on & on...I wasn't named motormouth for nothin! Hoping to maybe get a little more energy back, to lose the dry eye syndrome, all the while staying well. I'll have a scan soon to get another baseline. Last one was in Nov...that's if ins approves it this soon, with supposedly no obvious symptoms. I say obvious because I can always find something that concerns me.
After all that...have you seen the gyno yet, Shutter???? Hoping your visitor is late this month...or even better, has to cancel :-). Thinking of all my p/h (and tax). sisters!
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Thanks, ShutterBug and RonnieKay! I drink my 8 glasses of water, but I still wake up in the night with a bit of dry mouth, so maybe more water is called for. I also notice that if I feel a bit icky it often helps to drink water.
I don't know if I have posted it here, but there is a new group for Metastatic Breast Cancer patients called MetUP. They are staging a demonstration in Washington, DC, on October 13 to protest for more funding of metastatic cancer. Website: http://www.metup.org/. I plan to attend (and then I plan to run in the Komen Race for the Cure in Miami a few days later - with my #pinkisnotacure tee-shirt). They are taking a cue from ActUP, the activist group that changed HIV/AIDS from a death sentence to a chronic but treatable disease. There is an inspirational documentary about this called How to Survive a Plague: http://surviveaplague.com/. I know it's a little early, but if anyone is interested/available to go, let me know and maybe we can meet up. I will be coming from Philly and bringing a gaggle of friends.
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Thanks for info, Scrunch, won't be there...will just be back home from Disneyland w/fam...but will be there in spirit & hope :-)
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Just stopping by your group to see how every one is doing. I just started taxotere, herceptin, perjeta last Thursday and man it has hit me so hard. I am so tired and foggy. I have been drinking tons and tons of water to try to flush this out as quick as possible and stay hydrated. I was not expecting it to be this hard this quickly. I was told by my second opinion doctor that I would be on herceptin and perjeta forever. That seems a little scary to me. What is the longest that any of you all have stayed on this?
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Hello BabyRuth - Welcome! I have been on H&P since March 2014 and doing very well. I agree, Taxotere is rough. I managed 6 cycles of the 8 planned. Some women manage it well, all things considered. We all react differently. ~ Karen
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Welcome BabyRuth! I was on Taxotere for 6 cycles and on H&P only since January 2015. So far so good!
Just a note on hydration - I'm not a big water drinker and water tasted awful to me on the Taxotere. I survived on watermelon. Tasted great and kept me hydrated (at least until it went out of season...)
RonnieKay - We are pioneers in uncharted territories for sure. It is hard to know what to do, but I agree with Sue about trusting the professionals, and if for some reason you feel you can't then it is time to find another! Interesting that your doc brought up a vaccine/imunotherapy. I assume that would be a trial? I'm feeling better about my "visitor" returning (boy, haven't called it that in a long time. For some reason my mom used to call it "Martha") after talking to my second opinion doc. She seemed to think it was quite normal, even on Tamoxifen. She reassured me that most of the serious side effects from Tamoxifen happen in post-menopausal women, although I seem to recall someone either on BCO or one of my Facebook groups saying she had a horrible time with Tamoxifen. I have an appointment with the gyno on the 28th.
All the best to everyone!
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Hi BabyRuth. We are a rock'n gang here, so join in any time. There are a few of us, myself included, who did not qualify for the taxol/herceptin/perjeta combo treatment, and so our docs substituted navelbine for the taxotere. We got lucky in a way, because I know that the taxol family can be tough and navelbine was easier (sorta). I have been on only herceptin & perjeta since about December I think -honestly the dates all run together! The good news is that so many of us on this regimen are getting Really good results. I know that the taxol ladies will chime in here with help, but you can do this and we are right here for you.
Also, we happen to be having a conversation on this thread right now about whether our providers will keep us on perjeta forever. Some docs say yes, others say no. An evolving topic. SUE
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Welcome baby riuth
I like to say I recently graduated from Taxotere.
My first cycle was rough,,too.
It turns out that the side effects from Perjeta and Herceptin are worse the first time. Especially, Herceptin because it's a loading dose. Then you're body adjusts and it gets better.
After my first cycle, all my side effects were due to the Taxotere.
And yes, I was told I would be on H&P indefinitely. But that's a good thing. It means the drugs are working
Hang in there. It does get better. I read the Taxotere thread and it gave me great advice for dealing with the side effects of Taxotere.
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Baby Ruth...I'm right up there with SUE. I was on Navelbine, herc/perj for 22 months & have been h/p alone for 9 months. You prob know perjeta hasn't been open to the masses too long...I think early 2012, although in trials before that,
Yep...my onc is working on the vaccine trials, Shutter. He said I'm not far from his mind while researching it...feel pretty blessed I'm on his team & am confident he's doing his best to keep me around! He said they've already got people in the trials...and when I told him about Michthevanquisher from Michigan (I think that's where she is), he said they have patients from far away. Hope I never need it but....
Happy Monday.
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ps Shutterbug...glad to hear your body is reacting "normally!" I think I like the 2nd op person...what if you think????
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I liked her too RonnieKay. I think she was more personable then my usual Oncologist, however I like having my treatment at the smaller (and less stressful) hospital, so I've decided to stay with my Oncologist for now. It was reassuring to know that there wasn't much she would have done differently, and if/when I have progression I know I could go back to her and get her opinion on next steps. Hopefully I'll be in my 90's by then!
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Shutterbug...I also like the smaller atmosphere, and the "all cancer, all the time" surroundings...now that sounds crazy! Glad for the confident feeling!
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Hi all, I haven't posted in a long time. I read here regularly though...and for some reason, I never seem to have anything to add! I was inspired by the good luck people are having with the H+P, with the taxotere or another chemo.
I hope all you lovely ladies are doing well. Shutterbug, I got a chuckle out of the "Martha" comment. In high school, my BFF and I always used to call it that!
I just finished 4/6 of taxotere. I've been feeling pretty well throughout although this latest round knocked me down a bit more.
I feel a bit guilty about posting this here since I haven't been participating all that regularly. I need advice from those of you who are in/have been in the same shoes. When I was at my follow-up appointment yesterday, my doctor said that my tumor markers had "plateaued" and actually had risen by a few points. My markers had been falling in steady increments the last few times and of course, obviously, I'm discouraged. My doctor tried to reassure me and reminded me that is the trouble with tumor markers, they don't tell us much.
I tend to rely on my tumor markers because they had always been normal until shortly after my stage IV diagnosis.
I'm due for a scan very shortly; I'm just waiting for it to be scheduled, but yikes, any good feelings I've been having have just evaporated. I had been hoping that this upcoming scan would reflect the same response as my tumor markers. Now, I'm just discouraged.
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Oh Macy...it's the nature of the beast. I don't know about TM's plateauing, unless it means they are staying in the "normal" range...which is great. As you've probably read, some oncs don't consider them a tool in considering how you're doing, or tx is going. Mine does, mainly because, like you, they've told a clear picture of recurrence (twice, for me). He told me last appt, that he also considers my well-being as a good sign as to how I'm doing....although w/each dx, I felt pretty normal. Both my oncs have reassured me it's totally normal for TM's to fluctuate, so being in the normal range covers lots of ground. During my Navelbine/h/p, my ca2729 went anywhere from teens to twenties, and she said she wouldn't be worried if it got into the 40s (at dx it was in the 300s). Now they're anywhere from <5 to 9 (it was 6 last month & 9 this month so I gasped a little & my nurse gives me the "normal range" talk). Don't be discouraged..(I know sometimes it's hard). Remember, Tx is kickin those stupid cells silly & I think you'll be relieved once your scan shows things are going well!!!
I've had such positive reports lately so my body just got outta save the world mode and I had a good old panic attack yesterday! Driving to the dentist (where I've gone almost 20 years & they're more like sisters so no tension there), I couldn't catch my breath, started shaking, got dizzy...so I called them to cancel, exited the freeway (they're 30 min away), called my gp office (who told me to call 911...didn't do that), and went to urgent care. All checked out fine and dx w/anxiety...which I've felt coming on & talked to my gp about a few weeks ago. She referred me to someone but they weren't on ins :-(. Got an appt for some counseling with a gal at my center that I saw shortly after mets dx. Thought I'd try someone outside my cancer world but...guess I'll give this a try. DH can't figure out why this is happening when all is going well, but I tell ya, I'm a great "save the world" gal...I should've been a fire fighter or 911 operator. Adrenalin is my friend...until it isn't....blah, blah, blah! I'll let you know how it goes :-)
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Macy:
Never feel guilty about "joining in" at any time. We all come and go on the boards at different times; that's just how we all roll. If i understand your post correctly, you're on treatment 4 of 6 with the Taxotere. I'm no doctor for sure but is there a possibility that the Taxotere is killing off more of the cancer cells now and therefore more of them are circulating in your system, thus causing the increase in your numbers. My oncologist told me that my numbers would probably go up after the first few treatments due to circulating cells being broken off or killed so that is a possibility for you as well. We all know how easy it is is to be discouraged when there are concerns or doubts about how things are going. It sounds to me like your oncologist is keeping good tabs on your situation and will act accordingly to get you the best treatment possible. Hang in there; I believe it will get better for you down the road. Ann
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Hi Macy! Never feel guilty for posting or not posting. I'm the same way with the bone mets thread. I check in on everyone but can't keep up enough to post. I consider this thread my home. Glad you popped in! Also glad my Martha comment made you smile. I've never met anyone else who called it that! I agree with Ronnie and Ann about the TMs. Try not to worry unless the scans show new activity. I also know that is easier said than done. It hugs to you.
RonnieKay - I hope you find something to get that anxiety under control. How frightening that must have been!
DH has been in ICU for two days now for a nosebleed that will not stop (he's on blood thinners). I'm reminded how hard it is to be on this side of the hospital bed. Yesterday after the third attempt to stop the bleeding (and some morphine) he said he was scared and that he has to be ok so he can be here for me. Man, that got me. I went into the hall and cried. I'm so afraid of leaving him behind yet terrified that something will happen to him first. I'm lucky that I haven't spent much time in the hospital with this dx. Not looking forward to it in the future. He'd probably be upset knowing I put this out there but you ladies are my sounding board and for that I thank you.
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Sending comfort and encouragement, Macy. Never worry about when, how, why to post - we are all in this together.
Ronnie my girl, I am so sorry for your panic experience. Actually it makes complete sense to me. You and I seem to follow the same trajectory - I have gone back to acupuncture to deal with the anxiety that I cannot seem to handle any more. It seems counter intuitive after receiving good scan results, but happened all the same. My working theory is that now, with good news on board, we can allow ourselves the luxury of actually Feeling It. Maybe like taking the kid to the ER, dealing like a champ, then falling apart AFTER we learn that everything is going to be OK (?). No matter what the mechanism, we do what had to be done, right? Kudos to you for taking care of business, Dearhart. SUE
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Oh Shutter sweetie! Please keep on talking (when you are so inclined). Not only do I / we send love to you, but by sharing you help me to put my stuff out there too. Again, we are all in this together. Hope your husband and his medical team get it worked out soon, and you and he feel happy and easy again. Fondly, SUE
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Oh SUE...my DD reminded me of when she had the anxiety issue when finding out she was pregnant not terribly long after a miscarriage....I think I need to search that out. Thank you!
Shutterbug...sending love to you & your DH...what a frightening situation (for you both!) & I think it would be very hard to be the caregiver & to worry about someone else's mortality....especially when you're going through this unknown disease. I hope they find out soon what's causing the bleeding! It seems like a slam dunk to cauterize...that's my uneducated thought! My arms are wrapped around you...I can only imagine how he loves you...expressing living to protect & care for you. I love that man too.
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Macy - Never feel guilty for posting. We are all here for you regardless of how much you post. Please try not to over-think your tumour markers. There are many variables that can cause them to rise that aren't cancer. What does your doctor mean when he says your markers have plateaued?
RonnieKay - Panic/anxiety attacks are terrifying. Glad you plan on seeing a counsellor. I feel our minds have to process so much, we bury our feelings and keep a strong front for our loved ones that it's inevitable at times for anxiety to be triggered.
Shutterbug - What you said about your DH wanting to be here for you brought me to tears. My love to you and your DH.
Sue - Thank you for all the kindness and support you show all of us.
~Karen
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Hi ladies, oh my! Thank you for your reassurances and good thoughts. My markers had been climbing slowly before I started treatment. I was definitely out of the normal range but my numbers weren't outrageous. From after my first treatment, they started to steadily drop. I was still not back in the normal range but my numbers were definitely moving in the right direction--and I am still not done with treatment.
I certainly hope and I am praying fervently that the slight increase is from cancer cells dying off after a few treatments. Gosh, I hope that is the case. I wonder why my doctor did not mention it?
At any rate, I go for a PET scan next week. It was time to do one anyway.
shutterbug, I hope your DH is feeling better and out of the hospital. Poor guy!
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