HERCEPTIN and/or PERJETA Threads
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Hi ladies,
I understand the blowback from The Good Housekeeping article. I guess I'm torn between wanting to change public perceptions of Stage IV cancer patients as The Walking Dead, but at the same time I get that the public could just as easily file metastatic breast cancer under Cute, Pink and Cured. I think it cuts both ways. I am a university professor, I have told my students I am undergoing treatment for breast cancer (although I have not said anything about Stage IV), and I feel that I am a spokesmodel of sorts for people with cancer, and how my students perceive them.
I am joining hundreds of other women in Washington, DC, on October 13 (Metastatic Breast Cancer Awareness Day) to demonstrate for increased funding for metastatic breast cancer research. I posted the details here. It would be great to see some of you there!
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Hahaha! Freygea - I'll happily take the blame for encouraging the purchase of art and craft materials...especially coloring books! Enjoy!
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I've gotten 4 coloring books in the mail this month. Two sets of beautiful colored pencils.
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I love it! TXmom and Freygea you will need to post pictures of your creations!
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Lol TX! You been hanging around bad influences. Just wait until you find one or two coloring groups where the artist offers free coloring pages. 😊
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Quick question - today is my last day on THP (for now - I hope). The nurse, who is new, was going to give me Herceptin followed by Perjeta, but I remembered previous nurses telling me Perjeta first, followed by Herceptin. The new nurse called in a more experienced nurse, and they found that it does not really matter, although it is recommended to give Perjeta first if it is your first treatment (it's not). At any rate, the new nurse stopped the Herceptin (I had been on it for about a minute) and switched to Perjeta, so I will get Perjeta first followed by Herceptin.
Am I right about the order?? (Perjeta first?) Does it really matter?? Thanks for your feedback.
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From the Perjeta website:
Perjeta and Herceptin can be administered in any order.
However, an observation period of 30 to 60 minutes after administration of Perjeta and before administration of Herceptin is recommended.
It's really about time management. If you do Herceptin first, then you have to sit around for 30 minutes after the Perjeta dose.
If you do Perjeta first, then you can leave once Herceptin is done. Or start Taxotere if you're still on THP
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Thanks, Pwilmarth! I will stop worrying about it now.
sj
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Hi everyone,
I just had my second dose of perjeta. I get herceptin weekly and get afinitor. only on 2.5 of afinitor due to insurance issues. should be fixed in jan. its long story
but this perjeta really seems to make me tired. i slept till 1030. makes my mouth feel tingly. appetite was definately down these last weeks.
But anyway our anniversary is coming up oct 24. three weeks from now. we are planning on trip to puerto rico. oncologist says i cant skip the oct 22 dose. I feel really tired. I cant remember how i felt last time. but i think the first week i was tirest. which means maybe we should postpone our trip. havnt booked flights.
I am NED. and my energy levels have been returning. until perjeta.
oh and he did this new liquid bx. and my CTC is 18-high. and it appears i am triple neg now. he is repeating. he isnt worried he says. he specializes in triple neg. been researching etc. but in back of my mind that just scares me more. I am or was er, pr+, her +2-he considers her+2 to be positive enough for herceptin. thats why insurance denies afinitor.
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Just discovered bone mets per CT ad MRI and now starting a new course of treatment this coming Wednesday. This time will be infused with Taxotere, Herceptin and Perjeta. I previously had carboplatin, taxotere and Herceptin but not Perjeta. I struggled with my initial chemo. Was told by my Onc he thought it was the carboplatin that made me so nauseous. I continued my Herceptin for 6 more months and did not have any side effects. I really do not know what to expect this time. Any advice?
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I've missed my Herceptin for the past few months and I stopped Perjeta after only 2 infusions because of severe diarrhea, dehydration and low blood pressure. I don't take Zometa but I receive Xgeva injections which are similar. I was Dx as Stage 4 w/bone mets at my initial diagnosis. Bilateral mastectomy, chemo and radiation must have done the trick because I've had no evidence of disease since last September.
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Crap...just typed and lost it! Told you, dear Shutter, I've been buying color books as gifts!! Sent one today to 11 (going on 19) year old grandniece/godchild! She's so precious...at her Gma's (DH's sis) garage sale last year, she set up a table collecting donations for bc research, in honor of me! She told everyone about my journey (as a 10 year old!!) and earned $400! I've been keeping Barnes & Noble in business! Next one is for me!
As for h/p....my nurses said they like to give h first and since I'd had it w/1st dx, I psychologically accepted that. One time, prob a year in, p came first and the nurse that day said it didn't matter. It totally freaked me out (but I also never move my furniture...lol). It didn't really make a difference...other than emotionally...I felt no different. In the 30 months of h/p, I had p first maybe 4 times, simply because they knew I wanted it that way. I never had to wait to leave after infusion, either way.
Fredntan...I remember you from diep 2012! I'm sorry you got this dx :-( I had been on navelbine/h/p for 22 mos & when they took chemo off my plate, my energy soared. I went another 9 mos on h/p and had mild fatigue. Since dropping perjeta, my energy's soared again...but I'd been on it 30 months. Since you've had just 2 perjeta doses, your body is probably trying to adjust. If you can postpone your wonderful trip, you may want to do that, for just a couple months, and I think you'll feel much better. Congrats on your anniversary!!!
Thinking of my h/p sisters!!!
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Ronnie - I should talk to B&N and Michaels about a commission on coloring materials! Your grandniece/Godchild sounds like a wonderful young woman. How sweet of her to raise money for BC when such a young child. I hope she catches the coloring bug. It's so relaxing! Time for you to pick one out for yourself!
Welcome to the new folks. My best advice for those starting treatment is to communicate with your doctor. If you are having side effects they should know. In many cases they will be able to do something about it. Unfortunately there are some SEs we just have to live with, especially with chemo. Congrats to those who have achieved NED.
Speaking of NED, someone just posted this interesting article on Facebook. Very encouraging. I'm not NED yet, but I'm talking to my doctor about surgery on the primary, Hopefully that would get me there.
Happy weekend to all of you. I'm off to get my blood drawn for Monday's appointment, then work a few hours from home, then a Bollywood themed party with some friends. Time to break out the sparkle!
(BTW - I lost my post too. This site does not play well with my iPad.)
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Wow... Really encouraging article Shutterbug! Thanks for posting! I think it sounds like surgery to your primary tumor could definitely be considered. I just got done with a lumpectomy and am almost finished with radiation and it was really pretty easy (except for driving to radiation every day for 30 treatments). Good luck with whatever you decide is right!
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Hi! I've just started therapy with Taxotere and Herceptin, second dose next Thursday.
Does it make a difference which of these drugs is given first? When my oncologist described treatment, she said first H then T. But when I went to the Infusion Clinic, the nurse wanted to give the Taxotere first. I was scared to death anyway and protested; she phoned my oncologist and switched to Herceptin then Taxotere.
I've calmed down a tiny bit since then, and don't want to be a trouble maker about i fusion order if it really doesn't matter.
The Herceptin went in fine, but the Taxotere burned the entire time
Thanks
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Thanx for the article, Shutter. Seems like things are getting better all the time, I hope for each and every BCO one of us. Better living thru science ! Love to all, SUE
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Thank you for posting the article Shutterbug. My last CT scan showed only one tiny spot in my lower back that my oncologist said "could be anything". Meaning it may not be cancer could be an old injury, arthritis etc. Very exciting to me as I had mets in 12 bones plus all the nodes behind the left side of my chest wall and in my left armpit. I didn't have a PET, CT or bone scan prior to my bilateral mastectomy so the oncologists and myself were shocked to find out I had mets. I had mixed feelings about having a bilateral mastectomy when it probably would not have been prescribed if we knew I was Stage lV from the beginning. But after reading this article and several others I am grateful. Just a side note...I elected to have my right breast removed even though it was very cystic but "healthy". Upon biopsy a tiny ER+ tumour was discovered. Ultrasound and mammogram never picked it up. No nodes on the right side were affected and I have never received treatment for a ER+ diagnosis. I've asked a couple times about it and my oncologist said there is no reason to be concerned. ~ Karen
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Hydrane, no port, apparently they are only used as a last resort here (I live in Finland now).
I'm very worried about neuropathy --- after only one dose, the tips of my thumbs most of my fingers are much less sensitive
I am scheduled for two more doses of H plus T, three weeks apart, then three doses of Cytoxan-Epirubicin-5-Fluorouracil. I hope my left arm veins hold up (right sided mastectomy).What is "NED"?
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Thanks, Hydranne
Yup, tons of acronyms0 -
I have been thinking, so good luck trying to follow my thought process
one of my friends has stage 4 colon cancer. 1st time--surgery to remove tumor in colon and part of colon as well as surgery to remove liver tumor. Then chemo. 2nd time--in his right lung, surgery to remove it and chemo. 3rd time--tumor in other lung, surgery to remove and chemo. That's a lot of shit right?! Since this 3rd time finished, he has had no further treatment. Takes zero drugs. Ned for 3 years now.Why are BC patients in treatment for life? I mean ongoing? It is obvious my drugs have worked for several years now. Can I take a break? I am whining and wondering because my level of fatigue is severely impacting my qol. But I would be the biggest idiot in the world to give cancer a chance to progress again (if I were to stop treatment).
I know colon and breast are nothing alike. I really am not stupid. Just whining.
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Kjones, I take it you are just on H&P now? That's going to be my fate as well. I think they keep us on these drugs because there is not enough information about at what point, if ever, it might be OK to take us off. ER-positive folks, even those who are not Stage IV, can take Tamoxifan indefinitely. A friend of mine has Stage IV non-hodgkins lymphoma. She was on chemo for a year, followed by a stem-cell transplant, and then nothing. She has been NED for 8 years. For some reason stem-cell transplants have not been effective in breast cancer patients. It may be that the docs need something more fundamentally systemic, like a stem-cell transplant, to keep the cancer cells in hibernation without treatment.
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K, I don't know for sure of course (housewife not a doctor), but my understanding is that there are very, very few chemos that are effective against colon cancer over the long term - no maintenance. So I am guessing that removing the tumor and then throwing some system-wide chemo at them is the best shot. I am so glad that it's working for your friend - a blessing.
I am told that the "plus" side of our cancer is that there are so many drugs that just tamp down our bad stuff and then sit on top of it for long periods of time. The "not plus" side being that we often feel like crap.
I am sorry K, thinking of you and hoping you feel better. Have you considered a caffeine supplement? I remember reading that some ladies on the boards were doing this when fatigue was a major problem. Fondly, SUE
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To fight fatigue I have been using Rainbow Light Chocolate Protein Energizer powder in my shakes in the afternoon. I really like it and I do feel like I have more energy. I bought it at GNC. It's vegan, no soy, nuts, fish, gluten or yeast.
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A little good news today because we deserve it! XO http://mobile.journals.lww.com/oncology-times/_layouts/oaks.journals.mobile/post.aspx?blogId=9&postId=216
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Happy Monday everyone! Thanks for posting the articles ladies.
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before I sound like a total ass--I am so very happy my friend is doing well...it's actually my friends husband. The two of them met later in life (late 30's). They got married in August and he was diagnosed Christmas Eve that same year! That chemo he took...I think you are right sue...they just threw whatever they could at him! I swear he was the sickest I have ever heard/seen! He even got anticipatory nausea! I wouldn't have lasted a week and he did it three different times! Amazing. When things started to calm down, they tried and tried to get pregnant. Spent a ton of money on drugs and all kinds of procedures. Never worked. Then a year later, she got pregnant! And now she is pregnant with number two!!! This Christmas Eve will be his 7 year cancerversary! I love them!!
My fatigue is bad, but no where near as bad as what a lot of our sisters here go thru.
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Kjones,
I stopped herceptin and perjeta in jan because of side effects. So, I have been on no treatment for 8 months. I have been Ned for over 4 1/2 years and will have my next scan in nov.
Obviously, extremely nervous about the scan but being off of treatment has been wonderful.
I still have neuropathy and some joint pain/ fatigue but slowly getting back to normal .
Laurie0 -
Laurie--that's good to know! I hope the scans continue to show Ned!!
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i just had my second perjeta last week-feel normalish now. mouth not as tingly.
but i have rash on face-I thought it was acne-it started right after first perjeta. I did do some sun those first few days.
my NP/onco told me it was rash and to keep it moist. but ew I hate it
trip to PR going as planned, its our 29 anniversay trip. last 4 have sucked-cancer. Time for me to learn to live again. I started painting class. I love it. I am determined to make friends without cancer. I have 1. lol
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fredntan - I had the same rash! It was all over the top half of my body. It was really bad with the 1st round, didn't happen at all with the 2nd round, a bit worse with the 3rd and then really bad again with the 4th. After that it began to happen less and less. Now and then I will still find a spot, usually on my back or arms. My doctor prescribed an oral antibiotic called minocycline when it was really bad. Now I have a topical bottle of minocycline that I put on the spots when they show up and it seems to help dry them up.
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