HERCEPTIN and/or PERJETA Threads
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Thanks for the advice everyone. I will add biotene to my routine and get an electric toothbrush. No lumps on lips yet. What a roller coaster we are all on. So thankful for this thread.
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has anyone tried the her2 app on apple? read about it in canc er mag, supposed to be for those her2 positive wonder if they have area where symptoms can be tracked. I have android so havent been able 2 ck out
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Jmo...haven't heard of the her2 app but hope to check it out..I can't add anything since my phone is full...can't stand to erase pix or texts, even though backed up in 3 spots...I'm nuts & admit it. Next phone will be 64 gb!
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If this is the one promoted by Genentech, I downloaded it but never used it much. It had basic information, and didn't seem to be updated regularly
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Do any of you haven to wait a half hour after taking perjeta to make sure there is no reaction
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bhd1: All they ever do with me is run saline in between my infusions for just a few minutes to make sure all the meds got in me. Before I even start my therapy infusions, they give me 500mg of Tylenol and a large infusion of Benadryl to take care of any allergic reactions. Ann
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yes I have to wait 30 mins which is really frustrating...because I had already been on h and p for over a year and then this became protocol. I try not to think about it or stress. I tend to blow up and let my frustration out at whoever happens to be there with me. Don't want to do that to my sweet chemo nurses! Ya think I would be grandfathered in!
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I have been on H and P for just over a year. In regard to the new protocol of a 1/2 hour wait between the two drugs, I was told it is due to reports of pain at the injection site for some patients. It surprises me to read that some of you are give meds prior to infusion. I never have. So much information/experienceon this thread...I need to spend some time and read from the beginning.
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The 4Her app has some good information, particularly for newly diagnosed patients. When I was first diagnosed I had no idea there was a co-pay program through Genentech. Thank goodness I read about it on BreastCancer.org. The program has been a huge help from a financial standpoint for me. Please feel free to ask if you aren't enrolled!!
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Geez, I must get the slimmed down version of infusions. They do my bloods, then order the meds. I don't get any pre-treatment or pre drugs, not even Tylenol. And they don't wait 30 minutes between the H and P either, they just give me a few minutes of saline. Haven't had any problems (so far). SUE
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I am asked to take one extra strength Tylenol and an antihistamine 30 minutes prior to my appointment. My first infusion is Zantac. Takes about 15 minutes. Then Perjeta. Then saline for a few minutes. Then Herceptin. - Karen
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Hi everyone! I'm a bit behind from not being on her a few days.
Mikarae - YES, slowed down infusions help a lot. I get herceptin for 1 1/2 hours and perjeta for an hour. The very first treatment was slow and they sped it up the second one and I just told them on the third one that we were going to keep it at the slower pace and they've done that ever since. For the newbies, remember, you can control some things so speak up!
ReneeSwan - I had mouth issues when I was on Taxotere. Some people recommend Sensodyne or one of the Crest products, but those actually made my teeth more sensitive. When I am in pain or stressed, I grit my teeth at night, some of your pain may be from that unless you know for sure you don't grit your teeth. Sometimes, when I'm working and thinking hard, I've found myself doing it. I've just been working at telling myself not to when I go to bed at night and make sure my teeth aren't touching, I think the conscious effort has reduced the gritting some. I hope you get relief from your mouth issues. Are you noticing your gums hurting about the same number of days after perjeta, consistently? Sometimes these drugs come out through the mouth and gums. If that is the case and you gargle starting the day before perjeta, and then several days after, baking soda and water helped me a lot, so sorry it's not taking care of yours. On a side note though, baking soda rinse does a lovely job of whiting the teeth!
JM06 - about 1 week after treatment my face would break out. I switched to Cetaphyl body CREAM and sometimes I have a couple spots that last a couple days instead of my whole face and a week or more.
RonnieK - no lumpy lips since I've been off Taxotere, I had just a couple bumps but they were on the inside of my lips. It doesn't sound like you recently had Taxotere though. The perjeta study results are great. Are you currently 100% remission?
I had my implants put in yesterday. I'm not thrilled. Out of this whole damn cancer thing, I was supposed to get a boob job. I know that is stupid, I should be happy to have life. But that little goof ball thing, knowing I was going to be able to wear a dress that looked more balanced between top and hips was just really exciting to me. Because I have no fat (even though all my fat in my body is in my thighs and gut), it's just the implants and my PS uses fat to cover the edges so it looks pretty, and he couldn't do that so he obviously used the smaller implants. I'm a bit perturbed, because I think that should have been my decision. I didn't care about a hump on the edges. Maybe he has seen that though and knows if I saw it I would care. I just feel gyped. It's not like they are expanders and he can squirt more in....this is it. I should note also, that I really like my PS, he is wonderful and does a great job, I just wanted to have some boobs. It's not his fault I don't have enough real estate or fat to have them. It just gets me, how do this chicks electively get boob jobs?! I guess it is because they still have their breast tissue.
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Has anyone noticed if infusion is slowed down they have less fatigue
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bhd1 - I get a saline flush before and after the infusions, but I don't think it takes 30 minutes.
I have a heart question for you ladies. At my last appointment the doctor said my Echo looks fine. It was the first one I've had since starting treatment. When I came home and read the actual report, it says my Left Ventrical Ejection Fraction decreased from 73% to 63%. Google tells me the average is 55%-75%, so I am still well within the normal range, but I wonder if I should be worried that it has gone down by 10% in such a short amounts of time?
My CT scan also indicates " ...new atelectasis along the medial margins of both lower lobes along the posterior mediastinal pleura...could represent post treatment related change if the patient has received radiation therapy..." I seem to be more easily out of breath than usual, but have been blaming it on being out of shape. Now I wonder if these heart and lung changes could have something to do with it. Any similar experiences?
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Shutterbug73 mom has not experienced this however it does make me worry that side effects it has on the heart, try not to think about it 2 much. Even read where mom gets treated they are adding a heart center because now alot of these drugs have side effects with the heart =( sorry not 2 much help
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Hi Shutterbug, my EF bounces around within the normal range and my heart surgeon sweetheart is not concerned. Being really anxious or running to the cath lab could make the EF in the high range. As long as you're between 55% and 75% you have reason to be happy about your heart function. They don't have a long term baseline to go by, they just have you're first and second Echo.
I know the effects of Taxotere went on for months after it ended and round 5 and 6 were much much worse than the previous 4. After the last infusion I could hardly go up the stairs in my house and hiking hills was a supreme effort. Guessing the out of breath is from months of chemo. I'm much better now, 7 months out.
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Shutterbug...sounds like your numbers are good! I like high numbers & when my rate went from 66-69, I was so proud..LOL. My onc said it's not like an A to A +....basically anything 50 & above is good. So, my "expert opinion" is...A+!!!! And...when I read my ct scan, everything sounds troubling/confusing so my onc explains in detail...hope that happens for you. I agree with Miche...your energy has been zapped big time, it may take a while before you get it back...slow & steady
Barb...Same as Sue...I have blood draw, go to infusion, nurse orders meds, saline for a couple minutes, 30 min her, 30 min perj (except the time a new nurse did it in 10 min!), a 2 min flush & I'm outta there. Nothing else except ice cream from the cantina
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Thank you for your responses. I feel much better about the lower EF now. I need to learn to be happy with good results and leave it at that!
RonnieKay - it did feel like going from a A+ to a A. I guess this disease is not for perfectionists!
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Ahhh Shutter, I totally get it
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Shutterbug, as the other ladies have reassured you, your EF numbers are nothing to worry about. Mine went down to 10-15. Of course I had to stop the HP for awhile to let my heart recover which it has. My echoes are now regularlyabput 50 and I'm back on the HP and NED on my PET CT.
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First on Herceptin Spring 2012, I had at first the 30 minute infusions. In about 3 months my EF dropped from 165 to 150. Just a month later it dropped to 43. I was breathless, and had to see a cardio doc. I was very fatigued. I felt my heart jumping about my chest. My oncologist said she would never put me back on Herceptin because it was toxic to my heart.
Now, that I'm MBC, I need Herceptin for life. Thus, we are doing the 90 minute Herceptin infusion every week. I am slightly tired, but nothing like the first go around Spring 2012. The Perjeta week (every 3 wks) I feel a little more ill, and fatigued. Yes...having my Herceptin deluted helps with the severe side effects I have had. I have more life and energy too. The best in regard to slow infusions is it makes it possible for me to continue the medicine.
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asked about cream for moms face dr said think was reaction to chemo so will not order one. Mom got back path report from surgery and said that mom had 100% response to chemo so will keep on with h&p as long as tolerated recommend seeing her primary for check up and to keep eye on heart, beta blockers etc
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Congratulations to you and your mom on her response to chemo. That is so wonderful to hear.
I do still get a mild version of the rash, even after dropping the Taxotere. I still take Minocycline beginning around day 2 and it seems to limit the severity and duration of the rash.
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Jmo...wonderful news for your Mom!! Hope the rash goes away...and if not,at be ask dr about the minocycline Shitter takes. Celebrating you great news!
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Oh RonnieKay - read that again. I can't stop laughing!
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lol yeah well def keep an eye on it thanks ladies!!!
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OMG....bet you've never been called THAT before...Shutterbug (it would seriously not change it to Shitterbug, would it...LOL!!!). I love you for not reporting me to the powers that be!!!! I'm kinda cracking up too :-)
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Practicing better typing skills
. Hope everyone's doing well!0 -
All is well here! Hope you are well too RonnieKay!
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