HERCEPTIN and/or PERJETA Threads
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Hang tough, 2ndtime, (I know you are) - you can do this.
And Ronnie, I will be sending all the good karma I can conjure up on Thursday. Please let us know, dear. Meanwhile atavan works! SUE
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2nd- Sorry to see you had to end up at the er. Glad you are back home. You feeling better today?
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Good Morning
I am feeling better today. I am on a Z pack antibiotic also so things have calmed down in my throat.
TxMom I feel your pain. Going to get my head shaved today. I already experienced it falling out last time I was on Taxotere & hated watching It fall out I am just going to sit in a chair close my eyes & wait for it to be over.😓 I saved all my wigs & scarves so I am ready.
Shutterbug I hope you DH is home & doing okay?
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RonnieKay
I wanted to ask you to find out from your onc if there are any vaccine trials for my Stage 4, Er- PR- Her2 +++ cancer? It is just in my lymph nodes now, so I want to knock this down before it settles into my organs!
Thanks
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Hello fellow Her2+ sisters -
I just wanted to check in and tell you how amazing this regimen is! I was diagnosed stage IV from the get go with a met in my liver. I did 4 months of TCHP and have been following up with Herceptin and Perjeta every three weeks. I just finished up my RFA procedure on my liver and lumpectomy and SNB on the breast. While they were in working on the liver tumor they did an ultrasound of my entire liver and a biopsy and the liver was cancer free! We ablated the spot just in case. My breast surgeon checked my sentinel nodes and no cancer! She also couldn't find the tumor in my breast but took out a spot in the area just in case and same great news.... No cancer!!!!
I know it's not cut and dry with stage IV and cancer could be lurking in other places and come back any time but for now this is the best news I could hope for! I will finish up radiation in September and continue Herceptin and perjeta indefinitely. I will continue to hope and pray that these drugs do their thing on my cancer.
Hoping for good results for everyone here and strength and love to you all! Your stories and positive outlooks have been keeping me going through all of this. Thank you!
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How absolutely wonderful for you, josalive. A victory for one of us is a victory for all of us. Take THAT, cancer! SUE
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Love seeing this Josalive! Thank you for sharing your news. Love seeing these types of exepriences. This gives me energy to get my next taxoterrible.
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Thank you for all your good thoughts!
Ronnie, good luck with the scans this week. I will be thinking of you. I will look into Navelbine for future use but I am going to go with Adriamycin and Cytoxan. I didn't have Adriamycin the first time around so if anyone here had it and remembers any pointers...that would be great! I haven't found anyone who has had Adriamycin for our lovely stage IV. s
txmom, I haven't read Radical Remission so maybe I need to. Thanks for the nice message.
2nd time, I am saving Kadcyla for the next treatment. I have it is an option now but I am going with Adriamycin and hoping that it works because, as my one of my oncs so wisely put it, my cancer hasn't been exposed to Adriamycin yet. Also, I've already lost my hair so now seems like a good time. Hehe, the things I think of!
Sue, yes, it is one step forward and one step back. I've learned to not expect anything with this and no longer try to predict what will happen next.
Freygea, thank you for the lovely message!
Hope everyone is doing well. I may hang around on this thread despite not having TPH any longer, since we are all hersies.
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josalive - Great news!!!!
I hope you are celebrating. ~ Karen0 -
For those interested in vaccine trials with HER2+ metastatic who are NED or stable bone mets.
I just finished a vaccine trial at University of Washington. I had no side effects (except getting to Seattle 4xs in 4 months) and the randomized part has to do with PSK a mushroom supplement so everyone gets the vaccine. They began accepting people who are on H&P. I started a thread on this sometime ago but heard little.
The trial is with the Tumor Vaccine Group at UW (website: https://depts.washington.edu/tumorvac/clinical-trials/breast-cancer) and is called
Protocol 135: Phase I/II Randomized Study of Combination Immunotherapy With or Without Polysaccharide Krestin (PSK®) Concurrently with a HER2 ICD Peptide-Based Vaccine and Trastuzumab in Patients with Stage IV Breast Cancer
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Please stay Macy! You are one of us always. Fondly, SUE
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josalive. What Great news! So happy for you!
Macy please stay we all HER2 sisters. If this protocol doesn't work for me I will be trying something else too.
Miche. Thx for vaccine info
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Agreed Macy! We will want to hear how A/C is kicking it to the curb! Yep, a positive se...already being bald..we'll take any positive spin we can! Love & hugs.
2nd time...my onc is out of town this month (sad face) but I'll pick his brain :-). Would be so happy if your organs could stay as far away from this crap as possible!!! I know bc.org lists a section w/trials. I'm sorry for the scary moments with your throat! I remember a low grade fever w/first mets tx...it's all so scary...then to add fever & fiery throat...ugh. Glad you were checked out & recovering. I think we have to listen well to our bodies...and you did!
Thanks Miche...sounds like the study my onc spoke of, w/the mushroom. Hope it's amazingly successful for you & many, many! Praying the all of us can benefit from a vaccine...soon!!!
Josalive...this is the most amazing news!!!! So happy for you :-). Bet you're walking on clouds :-). And Freygea....I'm thinking taxoterrible is doing a number on anything lurking around you!!!!
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mitche - those clinical trials with vaccines are fascinating. I will be very interested to hear how it goes.
Josalive, I'm very happy for your positive news!
Today was my infusion day. Amazing how it feels. A little sleepy and drowsy during infusion. I am waiting to see if it will be a peaceful post infusion week.
On radiation therapy now, just completed 10 of 25 treatments. So far it's going okay, but I am waiting for the se's to hit next week. We won't be doing another PET scan until October, but I will have a heart scan this month.
Hope all continues to go well for our THP fals.
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Pwilmarth...I'll go a little farther & say I hope ses from rads totally skips you!
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Hi, I finished my second THP infusion last week and I noticed the side my cancer is on, near my lymph nodes kind of hurts, not a pain but kind of like a low grade burn sensation. It doesn't hurt if I touch or rub it, I can't feel any lumps. I had it after the first infusion too. Does anyone else get this? I'm hoping it's the cancer melting out of me but you know, a pain just isn't a pain anymore. Thanks for your help.
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I do get this TX. I get it in my liver area and in my right breast where my lump is. I too like to think it is my junk being blasted. My doc says it is all good and he can feel the difference in the breast. He was not worried about the sensation and kind of looked at me like "errr..k" He did want to know if it starts to hurt bad. He did say my cough and clear congestion I get a few days after tx is a "good sign this stuff is working on your lung mets"
I take the burn as a good thing.
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Freygea, thanks so much for the quick response. Yes, I try to think of it as melting but at 4 am those doubts creep in and I just wondered if anyone gets them too. BTW, I'm your cancer twin, dx the same day, same stage, triple +. Hug
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Oh Wow TX. Cool beans. I hate that you have this horrible disease but feel fortunate to have a cancer twin. Pming you my real name.
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I know right? Why couldn't we be powerball winner twins?
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Hey we still could be.
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Yeah, then we can pay our bills. ha ha ha
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txmom, I had pain too at the site of my large tumor on right side and under right arm where there were positive nodes. I was treated successfully with T/H/P which brought me to NED status and my tumor reduced by 50%. But I was having pain after chemo was done, I was worried not knowing what was causing it. I told my Onc and he said the pain was due to nerve damage from the cancer. Just had masectomy July 7 so no more pain since then like I had had it. Just pain from the masectomy.
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Jc...glad your mastectomy is done, sorry for pain...I remember it well...and wishing you quick healing! Hope you've been able to get rid of those awful drains.
Freygea & txmom...holy smokes...you two must've been separated at birth!!! Will share with your older sisters when you win the lottery :-)
Got my scan results while waiting for infusion (nurse called me less than an hr after scan). She wanted to share good news. Liver is clear....I cried. My lungs are still clean. DH said we need to remember & celebrate this til next scans. I didn't promise...but I'm running with it now! Just that little "I'm dropping perjeta" twitch...but I'm trusting my onc. I'd never thought I'd be off chemo & he had faith...I am too!!! Thanks for bring part of my lifeline. Love & hope for all of us!!
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That is Great News Ronnie! It is Friday so you have no excuse to not go celebrate tonight! I hope ypou have a great weekend. Go have some fun!
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Please if someone can help me I just finished 19 rounds of taxol weekly with every 3 weeks h&p with taxol every 3 weeks now off the taxol been 2 weeks now but continuing with the H&p every three weeks ,i am still very tired no energy and been having terrible pains all over especially legs is this normal and is there something besides advil i can take daily still working full time but between the energy and pain i cannot stand it do not want to go on any pain meds I already take xanax daily for anxiety so i know that has a part of my energy also.Would love to get off off the xanax but my anxiety is so high right now is I am nervous i cannot eat lost alot of weight the xanax helps to relax me so I can eat feel like a xanax addict I know i am proboly addicted to them by now,but that is the least of my problems maybe when i take my next scan end of the month and see what is going on i can start slowly taking myself off xanax I feel like such a mess.
Thank You for any help
Patti
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Ronnie - YIPPEE!!!! So glad for your good news.
Patti, I don't have any good advice for you, just sending understanding and good wishes. SUE
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Patti, it sounds like you really need to talk to your doctor. He can help you by adjusting the level of medicine you need. I know that some people have had success with Ativan as well. Also, perhaps taking some time to try meditation or just clearing your mind and sitting quietly. If stress is controlling your life it's going to be hard to come off medicines. If you don't want to take medicine for the pain, then make sure you are staying hydrated and keeping your electrolytes in balance; that can help with a lot of secondary issues. Best of luck to you.
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RonnieKay - so happy to hear of your excellent scan results! What a wonderful nurse to call you right away and before the weekend to share the good news. Herceptin only infusion should be a breeze... My onc feels the same way that I shouldn't be on perjeta forever but we agreed to a year before she takes me off. Good luck!
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