HERCEPTIN and/or PERJETA Threads
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mikarae: At least I know I'm not alone in the slow-growing hair or the nose drip. The most embarrassing thing I had happen was when I was in a restaurant, up at a counter waiting to pay for my lunch. The man was processing my debit card, and I started dripping right onto the counter. Half the time I don't even see it coming--it just starts up randomly. I don't know if he saw it or not, but I sure did, and it was not pretty. Sometimes I associate myself with the hardcare drug users you see on TV shows that walk around all the time with this runny nose, wiping it all the time. That's all I need--I can hear it now--"Did you hear about Ann? I think she's on drugs." Oh well, I can and will deal with it, just as we all do. Have a great day everyone! Ann
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Oh Teakie/Ann! Thank you So much for the morning laugh .... -"Did you hear about Ann? I think she's on drugs." .... I literally laughed out loud and now my nose is running too!
I finally ditched the wigs and scarves this week too. I'm in Maine and it got too hot. The wig was always sliding around and the scarves were getting tiresome trying to creatively tie them different ways. My family, co-workers and church friends couldn't be more supportive! The guys are the funniest - the are giving me tips on how to tame short hair .. about 2 inches long! One guy with no hair on top only around the sides (the "monk cap" I call it) keeps telling me he's jealous! They all make me laugh ... which is by far the best medicine I could ask for.
Everyone has to reach that point in their own time, but you'l be much more at ease when you do. Try it... you'll like it!
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Hi All -
I am finishing up with my 6th round of Taxotere/Carboplatin/Perjeta/Herceptin as first-line treatment after being diagnosed stage IV from the get-go and my oncologist is suggesting that I just go on maintenance Herceptin indefinitely after this. I noticed that most everyone else is on Herceptin and Perjeta and asked my onc about this and she said she doesn't recommend it because the long term side effects of Perjeta are not yet known and that I could use it later if I have progression. Does anyone have any thoughts on this or have you heard anything different from your oncologists? I really appreciate any advice you can give me.
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josalive: All I can tell you in regard to my treatment plan was that my oncologist automatically included Perjeta with my Herceptin, no questions asked. I have been on H & P right at one year now and so far, so good. Became NED in March of this year after PET scan showed no evidence of disease, and I will remain on these therapy drugs for life. Ann
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Thank you so much Teakie. It's good to hear you've tolerated it well for over a year and even better to hear it's gotten you to NED!
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Josalive-I did h and P with taxotere in 2013, and my onc felt the same way so I went about a year on just Herceptin (plus tamoxifen because I have some ER+). However, in Sept 2014 when the final Cleopatra study numbers came out showing a big benefit in overall survival when the H and P are used together, my onc and I talked and decided to add it back in, even though I hadn't had any progression. I think at this point using them together is considered standard of care. Definitely have another conversation about it or get a second opinion. I don't know if it was a coincidence or not, but my tumor marker had drifted up right to the top of normal range before we restarted the Perjeta, and then it went back down about 13 points. So far 8 months with everything stable on the two together-long may it last!
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OMG SHUTTERBUG!!! You are badass beautiful!!!! I can't believe you kept Betty hanging around (literally...wink, wink!), when you look so outrageously gorgeous. I'm jealous...my SIL keeps wanting me to cut my hair off...he says when mine was growing in, like yours, it was my best look ever. I seriously loved my hair for about 1.5 yrs after chemo, then it relaxed and looked same old/same old..which was fine, since I have a buttload of hair. Navelbine caused thinning but in the 8 months since it ended, it's getting back to normal. I do the biotin thing...whether it helps or not...sure ain't helping the nails...oh well.
Talk about drippy noses...I agree Teakie...nothing like a wet circle on the check I hand to the cashier...ugh..tmi. I literally don't know it's dripping, either. Even my grandkids point it out...Gma, your nose is dripping. I also have allergies, so sometimes I get bloody noses. I also have boxes & boxes of tissues & lots of hankies. My girls did the dye hankies (for Father's Day gifts) in Campfire-30 yrs ago!!! I'm using those...since DH hardly used them...maybe blue & yellow hearts weren't his thing :-)
My eyes are pathetic!!! So dry...went to dr on Tues. Allergies, yes, but I'm also blaming perjeta. I can't use eye make-up without being sore the next day...special ocassions mean dressing up & looking "bright"...also means sore eyes. Dr said to use tears (I use systane too, Sue), but he said to use gen-teal (OTC) at night...like fluid Vaseline & I got eye drops...ins paid all-$360...ridiculous!!!
Josalive...I'm hearing you loud & clear about perjeta. My onc is planning to take me off in Oct...1 year after dropping chemo. He actually told me, when he dropped Navelbine, that the goal was to drop perjeta as well. It scared me then, but I'm thinking I may agree in Oct. He said it's ultimately my decision, but said the same-long term use is not clear-and it can be used as Carla said...if there is progression. He said herceptin has years & years of successful studies...used alone. I was on herceptin for the year after chemo in 09. When diagnosed the 3rd time, in '12...my onc said she wished she could've kept me on H after 1st dx...but it's not standard care before stage 4...that needs to change! And I do feel much differently on h/p...than on just h. Who knows, maybe it's my age, length of time on drugs (22 mos navel/27 on h/p), hard to say. However...I would be very happy to live this life decades longer, whatever it is that keeps me here, I'll do...and I'm happy at this point it's h/p/letrozole...and a whole lotta love :-)
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Is anyone from Canada getting Perjeta (with Herceptin) as second line treatment and is it covered by your public medicare?
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If I do end up getting Prejeta,Herceptin and Taxotere, How long should I expect to have before I loose my hair? I want to obtain a wig but do not want to jump ahead of myself.
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My hair starting falling out on day 17. Hope that helps you
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Thank you Beatmon!
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Freygea - Mine fell out a few days after the second infusion. It fell out almost all at once, with my lashes and brows holding out a bit longer. I was happy with my decision to get a buzz cut and begin wearing my wig before it started falling out. It somehow made me feel more in control
RonnyKay- thank you for the kind words. You made me blush!
Oh do I ever identify with the drippy nose stories. I never go anywhere without a tissue, and it has made working in the garden nearly impossible this year. As soon as I get my hands dirty....drip.
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Ok Wig and Kleenex Got it. ; )
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Just wanted to post a picture of my tiger lilies now in bloom. They caught me by surprise--a couple of days ago they weren't in bloom when I looked at them, and today, looked what happened! My flowers and plants make me so happy, so I just wanted to share their beauty with you girls. Hope they bring happy thoughts your way and have a great weekend! Ann
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Beautiful tiger lilies Ann! Your picture definitely made my Friday brighter. Thank you for sharing it. I love flowers and my garden too.
Enjoy the weekend - Karen
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Lovely Tiger lilies Teakie. I've always loved those, but I don't have any in my yard right now. That might need to change!
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So lovely, Ann. To me, tiger lilies always mean that summer is really here! SUE
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Freygea--I used penguin cold caps and didn't loose my hair in 6 rounds of Taxotere. I cut my hair and donated it before chemo started and had very little hair loss though around the edges (where the caps weren't tight) and my eyebrows and body hair fell out. Now on H&P my hair grows very very slowly.
My Onc is a believer in the result from the Cleopatra study. She said at the beginning H&P "indefinitely" and my heart function has stayed in the normal range after 18 months on both drugs. Otherwise she doesn't seem too concerned with the side effects but now I might ask her about the long term. Perjeta with Herceptin certainly is shown to add to people's progression free time though. I'd be curious to know just how long people have been on Perjeta and if many have had severe side effects or been taken off due to SEs. I can live with a drippy nose and a touch of neuropathy and slow growing hair. Its rather had to sort out what changes are from chemo and what's from H&P, or just H or just P. Don't know how one could sort all that out.
Lovely tiger lilies, thank you for sharing. Can't wait for the lilies to come out in Maine.
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Beautiful Teakie! We just drove to our farm home in eastern WA, and I think I saw Tiger Lillies in the garden. The garden was my mom's joy & I hate to admit I don't know what all the plants are. So...thanks for the scoop!
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Well, here's a new wrinkle, but it all worked out - whew! Woke up at 4am with really bad ache in my chest - lungs? Was so freaked out, knew that something was absolutely not right, felt certain that my lung mets had suddenly decided to do me in. Waited until 6:30 to wake my beloved up, learned that oncologist is out of town for 10 days so went (hysterically) to see my family doc who squeezed me in as she always does.
Turns out that after 4 weeks of the cold of colds (thank you, British Airways flyer who was sputtering and coughing all the way home from Edinburgh) I have pneumonia.
Should be fine, no hospital stay or etc. but have 4 medicines to take and am grounded for a week, all very routine. I guess that even cancer patients get non-cancer sick sometimes. Probably won't affect the timing of my scans in mid-July (rats!).
So armed with a puzzle, medicine bottles and two good books I guess I just have to lay around and eat chocolates. Not too shabby. Love to all, SUE
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Oh Sue, what a relief! I'm sure we are the only ones dancing out of our doctor's offices singing "Yay! It's only pneumonia!".
Put your feet up and enjoy your chocolate, puzzle and reading time!
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Sue:
Is it OK for me to say that I'm so glad it was pneumonia and not mets?! Since I was diagnosed in June of 2014 with stage iv, I had one case of bad pneumonia develop on me in August 2014 and then again in March of 2015. Both times I had to be hospitalized for four days each. I had never had pneumonia before and had no idea what it was until the day I went into the hospital the first time and had chest tightness I guess you'd say. My daughter, who is in nursing, heard the typical "crackling" in my lungs when she listened, so we knew that was what it was. After the second go round of it, I went ahead and had the pneumonia shot done while in the hospital treating it. So far, so good, but even though we may feel good, we will always be immunocompromised and will have to be careful sometimes who we're around.
So glad to hear you'll be on the road to recovery soon. Take care of yourself! Ann
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I knew you guys would understand - so happy to have pneumonia ????? You betcha. Now I need to be really careful and watch for recurrence of the dreaded C-Diff (already have meds on hand, just in case. My primary care physician is the best!)
I had a pneumonia shot, probably about 5 years ago - it's probably running out of gas. My doc says they have something new now, more effective than the 5 year one and good for twice as long. BTW, when do you think they are going to have a shot to prevent BC? Just saying. Love to all SUE
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Sue:
Haven't heard about a new pneumonia vaccine. I will be sure to check that out. Ann
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Sue - Thank goodness it is pneumonia. Where else can you say that? I can only guess how scared you must have been. We have the pneumonia shot seasonally in my province. I am going to make sure I am vaccinated when it is next available. I do get the flu shot but now that this has come up with you, I will get the pneumonia shot as well. Take good care of yourself. I'm thinking of you. - Karen
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So glad to see you have Pneumonia Sue! (That just sounds soooooooo wrong
)I just got a call from your doc and they said..yes you must do Chocolates!
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I would've sent a get well card, Sue, but ate 3 (small) bowls of Rocky Road ice cream...knowing that'd make you feel better (it's mostly chocolate)!! Did you happen to give Mr/Ms germ spreader the stink eye on the plane? I've caught myself doing that to people who cough in public (I sound mean...ugh).
Good thing you're the bounce back kid! Didn't know you'd need to watch for the c-diff to rear it's ugly head again...deep sigh :-( I'm glad you have the recipe for rest and hope you breathe easy very soon!!! Take care, sister!!!
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Thank you, Ronnie my dear west coast girlfriend. Dancing my way to the freezer now: rocky road -YUM! My fav! Fondly, SUE
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good grief sue! How scary! So glad it's pneumonia...that is weird to say. Please, please be careful of the cdiff! At the first sign, I would take it to be tested. Don't take the meds without a positive Id. Could make it worse. Bless you woman! I had a bowl of ice cream for you too! I will continue to eat chocolate everyday until you feel better :
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Thanks K - wish'n and hope'n that I have seen the last of the wretched C-Diff. Eat all the ice cream you can - I'm gonna. Fondly, SUE
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