Feb 25, 2018 11:21AM Oceanbum wrote:
Yes, I did 6 Herceptin with chemo along with Perjeta, Carboplatin & Taxotere. Now I am on a 9 cyce of Herceptin only.
Testing, treatment, side effects, and more.
Posted on: Jan 31, 2011 11:30PM - edited Dec 11, 2012 12:55AM by TonLee
This is primarily for people who find themselves with THREE +'s by their diagnosis.
If you are new to breast cancer, please click on the link below and read. It is "What I Wish I Knew At the Beginning of Treatment."
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Feb 25, 2018 11:21AM Oceanbum wrote:
Yes, I did 6 Herceptin with chemo along with Perjeta, Carboplatin & Taxotere. Now I am on a 9 cyce of Herceptin only.
Feb 25, 2018 04:43PM LTWJ wrote:tld2017, I had Perjeta with my TCH presurgery chemo and I lost 30 lbs due to the Perjeta. My onco said go through the 6 rounds then no more Perjeta. He said it only adds 1% more to the survival statistical so it wasn’t a big deal. The diarrhea from it was brutal.
Feb 26, 2018 12:05AM - edited Feb 26, 2018 12:05AM by Tresjoli2
tld I didn't have perjeta and I was stage 1 with no node involvement. This may be an awful way to look at it, but I feel like I have perjeta in my back pocket should I ever need it. So I'm not stressed I didn't have it, it was herceptin I really wanted. But good luck with bcbs...i know the fight is frustrating. My insurance wouldn't cover my Lupron injections because they were not "preventative". When I asked why not, she said "cause you already had cancer once". Dumbest answer ever! Luckily I hated lupron and gave it up. Hugs!
Feb 26, 2018 04:31AM ElaineTherese wrote:
To provide another perspective, Perjeta didn't have any side-effects for me. I had 4 Perjeta infusions during my 12 weeks of Taxol, and I got diarrhea throughout the 12 weeks, regardless of whether I had Perjeta or not. Both Taxotere and Taxol cause diarrhea; for me, it was most likely that Taxol was the culprit.
Feb 26, 2018 06:32AM Tess111 wrote:
I was given TCHP as adjuvant therapy. My MO finagled 6 rounds of Perjeta from my insurance company. I had extremely harsh side effects from this treatment plan, and my MO said to me after the third treatment that she wanted to stop the Taxotere and Carboplatin at 4 treatments. She said they were trying to "cure me, not kill me." (I was so on board with this new plan!) However, she wanted to continue with the last two approved infusions of Perjeta, which is what we did. I had a small tummy ache one day, and a little diarrhea - but nothing like the horrible Big D I had when taking all four medications.
Those two H& P infusions were during the month of December. I was actually able to enjoy Christmas and New Year's whereas, I was too ill to enjoy Thanksgiving that year. Taxotere was definitely the bad actor for me. I'm glad not everyone has that response to Taxotere, and I am grateful for my MO's treatment plan and her care.
Feb 26, 2018 07:01AM Blownaway wrote:
Tess111 - I also stopped T&C after 4 infusionsinstead of 6. One look at me and my labs before the 5th and the doc said "No more, you're done."
Feb 26, 2018 11:14AM Oceanbum wrote:
I was very fortunate to have very little side effects during my chemo. I had some trouble with constipation if you can believe it. But they had me on a stool softeners to help with that. Other than that I had some fatigue & some queasy days. I also had some acid reflux if I didn't watch what I ate. My numbers stayed up. I only had an issue once with low potassium but was able to get that back up with my diet.
Feb 26, 2018 12:33PM - edited Feb 26, 2018 12:41PM by deni1661
tld2017 - I had 17 rounds of Herceptin and Perjeta as part of a clinical trial. I had 9 before surgery and the rest after surgery. The only side effects I had were chills while I was getting the infusion and extreme fatigue for a couple of days after. A few times I had nausea the next day but it was barely worth mentioning.
My insurance covered both drugs. The total cost for each treatment day was 55K. That includes labs, the drugs, and nurse care.
Only time will tell if this combo of drugs is beneficial. I am NED now and this is the best any of us can hope for. My MO told me repeatedly that the AI and healthy lifestyle was the best way to avoid recurrence. I hope he's right, but again time is the real testimony on whether this treatment works. There are so many variables that can impact out
Feb 26, 2018 03:01PM - edited Feb 26, 2018 03:02PM by Rababasa
Hello, people. I've been reading your words of support and advice for a few weeks. This thread in particular really helped me feel like I'm not alone in this. I see I was way off in treatment cost. Today I told my brother that I can't imagine someone going through this without insurance...how could they ever pay $30K? That wouldn't cover one day of some treatments!
About me...I'm 42, live alone with my 2 cats in Phoenix, AZ and work from home/travel as an IT project manager. I only moved here 5 months ago from Chicago, and on Feb 2 was diagnosed with BC. The doctor who did the biopsy told me over the phone, and when I asked what the next step was, she told me to find a surgeon. My first reaction was panic, because I don't know the area, don't know the hospitals. The only ranked hospital is out of network. If I was in Chicago I'd know exactly where to go. I really only know my brother and sister here (my reason for moving). I was able to text my aunt the doctors and hospitals I found (she's a mostly retired surgical nurse), and she gave me her opinion and recommendations on what to look for. That helped.
So far I've had initial consultations with three surgical oncologists. I went to the first consultation alone. Don't do that. The doctor was so nice and spent 1.5 hours answering all my questions. I walked in expecting only lumpectomy and radiation. I learned here that I'd need chemo and that it's so much longer treatment. I saw "Her2+" and "triple positive" on the nurse's paper and looked up what triple positive meant on my phone when she went to get the doctor. I still don't know how I kept it together. Anyway, all three doctors ended up with the essentially the same treatment options. That's good. But I feel so anxious here. I have an appointment in Chicago on Thursday. If I feel comfortable with the doctor and center, I'll likely move back.
Today, I told a friend for the first time that I have BC. I was nervous and procrastinated before making the call (of course I must unload the dishwasher at this precise moment, hmmm the cats look like they need more water, am I sure that I don't have to pee?...let's go see). I feel relieved and pretty good that I told someone, so I decided I should post and introduce myself to you today.
Question: How did/do you bring up you have BC, even to a
good friend? I'm really struggling with that. Happy Sunday/Monday.
Feb 26, 2018 03:53PM HapB wrote:rababasa, I am sorry that you have to join this group. I also live alone and I know how overwhelming this treatment is to deal with on your own. Three weeks before iWas diagnosed, I took in my daughter’s cat and she has been my little pal through this. She seems to know when I am sick and in pain and cuddles up to the exact spot that is hurting.I think it is so important to be at a top notch hospital that you have confidence in. I am lucky to live in New England near top notch cancer hospitals. It was very hard to tell my daughter that I had breast cancer, and I was more concerned about her well being than my own. This is the third time I have battled unrelated cancers in the past 7 years. This is by far the longest treatment and so the most difficult to endure. You are going to need support. I did not have enough support and did not make it through the chemo portion of treatment, There is a standard of care that all doctors will recommend, but there are sometimes bumps in the road that require individualized plans of care.
Feb 26, 2018 04:39PM fluffqueen01 wrote:
hi all, I have a question I hope some of you regulars will know. My great nephew (almost 4 years old) is at st. Jude undergoing 15 months of chemo and 6 weeks of radiation for rhabdomyosarcoma. It breaks my heart.
He is on the radiation now and his skin has broken down on his leg and foot.
I seem to remember someone had a concoction for skin treatment when they had radiation that made the rounds of some threads but I can’t find it. Everyone swore by.
If you have the link or mixture could you send it my way?
I agree with the person who said they liked having perjeta in their back pocket. Since I had the mastectomy I got to opt out of radiation and I kind of think the same with it
Feb 26, 2018 11:38PM - edited Feb 26, 2018 11:39PM by SpecialK
rababasa - welcome! Sorry you have to be here, but we will help you any way we can. I'm one of those folks that told everybody - hardest one was a good friend who had lost her mom to breast cancer. A couple of years after I was diagnosed she found a lump - BRCA1+ breast cancer at 35. She is single and without local family. She is doing fine and I had the privilege of being with her for surgery and chemo.
Fluff - so sorry to hear about your nephew, no child should have cancer. Are you remembering the post a long time ago from Omaz for rad skin care? Here it is:
Feb 27, 2018 04:42AM Tess111 wrote:
Blownaway - I have no idea why, but it made me feel better to learn that someone else had to stop after 4 TCH. At the time, I had done some research and knew that there was data suggesting that 4 rounds were deemed "enough" in some cases, so I only made a half hearted protest when my MO said we were stopping at 4. I guess it must have bothered me more than I realized. So, thank you so much for chiming in with that!
Rababasa - So sorry you have to join us here, but you are in very good company. You probably already feel like you are on some kind of roller coaster. Just have faith that you can do this.
Fluffqueen - I am so sorry to hear what your little nephew is going through. If it is okay with you, I'd like to keep him in my thoughts and prayers.
I just read this quote by the Japanese writer, Haruki Muraka and thought it described my own breast cancer journey.
"And once the storm is over, you won't remember how you made it through, how you managed to survive. You won't even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won't be the same person who walked in. That's what this storm's all about."
Feb 27, 2018 05:37AM - edited Feb 27, 2018 05:38AM by Oceanbum
fluffqueen - I'm so sorry about your nephew. Poor little guy. I feel so bad for him having to go through that at such a young age. I'll keep him in my thoughts and prayers.
Rababasa - Hello! I'm fairly new here, too. I joined last summer after my diagnosis and shortly before my surgery and have read and reread all of the posts trying to get as much info as I could. It wasn't until recently that I started posting. You have come to a great place for help & advice!! And comfort and reassurance, too!! I'm sorry you are so alone in all of this. I wish you luck. Hugs to you.
Tess111 - I saw that quote somewhere not too long ago and thought it very appropriate for our journey.
Feb 27, 2018 06:39AM meg2016 wrote:
Fluff- you may also want to look into Mepitel- it is being used in New Zealand on radiation patients and has very good results for maintaining skin integrity. I used it through my radiation and had no skin issues. My RO knew of it, said they only used it after skin was breaking down, not as a preventative, due to insurance in the US. But you can buy it over the counter if it isn't prescribed (I ordered mine from Amazon.) Link to information: http://www.molnlycke.ca/en-CA/news-media/wound-care/study-showing-that-mepitel-film-prevents-radiotherapy-skin-reaction-becomes-news/
Feb 27, 2018 07:30AM deni1661 wrote:Tess111, great quote! I think it describes our journey perfectly. Thanks for sharing 😊
Feb 27, 2018 08:54AM Photogirl81 wrote:
Hope you all are doing great. I am getting a bit anxious (all the tests on the 28th) but I know I will sleep much better once I get the good results back. At least I am trying to force myself not to be too nervous.
So sorry that you had to join us, but welcome to this amazing group! I have started posting recently, but before that, I came to read a lot. You are not alone in this, and if we can do anything to help, let us know. I have learnt that here I can ask and say things without being judged, and find lots and lots of support.
One thing I wanna tell you which I wish someone had told me when I started chemo (gosh, will be a year ago day after tomorrow). Chemo is really not as bad as I imagined it. I was so scared, I had these graphic images in my mind of how sick I will get, how much it will hurt... IT REALLY ISN'T THAT BAD. Everyone is different, and unfortunately some people are more sensitive than others. But I did not vomit, not even once, I managed to keep working in between treatments, and I could pull myself together so well that nobody realized something was wrong.
Get a good wig (I had one that was really life-like, cost $299, let me know if you are interested in a few tips and tricks), and tell people! Tell them that you will be fine, just gonna have a rough year ahead. But please believe me: you can and will do this. Since I have to believe the same, I am not gonna let anybody think otherwise. 😁
Feb 27, 2018 09:01AM deni1661 wrote:Rababasa - I'm sorry you had to join our group but I'm so glad you did! You will find tremendous support, inspiration, encouragement and information in this group. These ladies are my life line and such a blessing.
Feb 27, 2018 09:03AM KimCee wrote:
Fluff, so very sorry to read about your nephew. It broke my heart. I agree with Meg on Mepitel, it is a wonderful product. I will keep him in my prayers.
Rababasa, Sorry you had to join us. I completely understand how you feel regarding being "not home". I moved to Florida from NJ two years ago. If I were married and able to not work full time during treatment, I would have gone back to NJ for treatment. Even though they did the same protocol here in Florida, I knew my doctors in NJ and would have just felt more comfortable with friends and family around. If you can go back to Chicago, I say do it.
I saw my PS today for my preop. She is using silicone implants, Mentor. Anyone have these babies in? Just curious. Just can't wait to get these expanders out. How can it still be so barbaric in 2018...smh
Feb 27, 2018 10:37AM deni1661 wrote:fluff queen, I am so very heartbroken about your nephew. No child should have cancer or go through the harshness of treatment. He will be in my prayers.
Feb 27, 2018 12:20PM Blownaway wrote:
Rababasa - Believe it or not, I learned of my dx the last day of March and told my friends and family the next day - April Fools Day! No one believed me!
Feb 27, 2018 01:09PM KimCee wrote:
Thank you Deni...how are you feeling? I hope better!
Blownaway...I am sorry...but I cracked up.
Feb 27, 2018 01:56PM - edited Feb 27, 2018 09:48PM by tld2017
Feb 27, 2018 02:27PM PeachyJeanne wrote:
Rababasa Hang on and trust your gut. Do what is right for you. Tell people when it feels natural to do so. Right now there is so much to process. People process differently. Some like to have lots of others weighing in on decisions and some like to process everything, make a decision on a treatment path and THEN share it. Neither one is right or wrong. Just go with what will make you most comfortable. There is a ton of information here. Know that things can change along the way but take comfort in knowing support from this community is a constant.
Fluff so sorry to read about your grand nephew. Sending good vibes.
KimCee good luck with the exchange. I'll have mine sometime after May.
Feb 27, 2018 11:02PM - edited Feb 27, 2018 11:03PM by shelabela
rababasa, sorry you are joining us. But you will learn so much here! We all have been through so much.
Kim cee, 😀 smiling huge. Get rid of this expanders
Fluff, sorry to hear about your nephew. Hugs
Hap, did you have your herceptin yet? If so how are you feeling
everyone else......Good morning ladies! Make it a beautiful day
Feb 28, 2018 02:35AM HapB wrote:
shelabela, I had Herceptin and so far I am hanging in. I have the pains again in my lower back, but not too bad right now. I will have an echo next week and see th cardiologist right after. Thanks for asking. I want to get through this if I can. What a long year we have all had! I can feel Spring in the air and I am praying that we are all cured 100%!!
Feb 28, 2018 03:01AM Taco1946 wrote:
Rababasa - I sent you a PM.
Feb 28, 2018 05:36AM deni1661 wrote:Hapb, I'm glad the Herceptin is not causing you big problems like before. I hope the back pain continues to be tolerable. Praying there are no changes in your echo next week so you can finish up.
Feb 28, 2018 10:56AM kae_md99 wrote:
ladies,im on arimidex ( accord) . i have itchiness and fatigue? my last herceptin was 2 weeks ago... i wonder if the cumulative effects of herceptinis causing the fatigue... also when is the best time to get the eya checked after herceptin? my eyesight is worse now...thanks
Feb 28, 2018 12:02PM shelabela wrote:
hapb, glad you are holding on. You are stronger then you think. You can do this.