TRIPLE POSITIVE GROUP
Comments
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Everybody keeps asking me if I am going to grow my hair back out. It was nearly to my waist when I was diagnosed. It took me 8 years to get it that long. And that was growing it out from a chin length bob. I can't even imagine how long it will take to grow it from nothing!!
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Cherry! I love your wig and you look lovely!! How do we post pics of ourselves? Will it be obvious on my profile page?
Cherry, you had me totally LOL with the comment about you becoming a high maintenance bitch. That definitely belongs in a book of quotable quotes - it is the best
. I feel so much the same way. I feel like I have become a full time job!!!I called someone about the possibility of hair extensions. She said she doesn't think it will work given how much hair I have. My hair started growing back (or I stopped shaving) in late October and 16 months later it's almost 6 inches long. But it curls up to look 3 inches, so it will take awhile until it's long enough to style. I figure another year to get it how I want. Thus the inquiry about extensions. But for those of you with straight or thin and curly hair, you could do this once you get a few inches. But it's pricey (but i feel worth it).
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So BCBS notified me yesterday that they will not pay for Perjeta. I'm incredibly disappointed because my oncologist said this is my golden ticket, the best treatment for me (along with Taxol and Herceptin). I'm seeing online that it could cost $10,000 a month if we had to pay out of pocket?! I'm not sure if I am looking at reliable sources though. My doctor will fight BCBS but it just seems ridiculous that there is a drug out there that can help those of us who are HER2+ but if we are not node positive and our tumors are not above 2 cms, we don't qualify. It is still HER2+! Has anyone else had these issues regarding Perjeta?
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Hi tld, in Canada a patient doesn’t get Perjeta unless they are stage 4. I thought it was brutal.
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Wow, PoseyGirl, I guess I should not be surprised then. It's just maddening to me that there is help out there, a treatment out there, that can help us survive but it is not available to us...
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tld- if you look at the data collected from the APHINITY trial of adjuvant Perjeta, those with higher risk - larger tumors and positive nodes - derived more benefit. Link below. Neoadjuvent Perjeta was approved for node positives or tumors over 2cm in Sept 2013.Adjuvant Perjeta was just approved very late in 2017, insurance may be reluctant to approve adjuvant treatment for disease that doesn't meet the FDA neoadjuvent treatment requirements, and may be slow to adopt coverage based on the study results. If I was treated now I would have received Perjeta, but it was not yet approved for early stage use. I hope it will make you feel better to know that I did not receive Perjeta when I was treated, but I'm still here.
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hap - awww, thanks
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tld2017, if it's any comfort at all, perjeta is brutal, seriously. My skin is still recovering. I could not do it again. If it were to show efficacy for low grade stage one, the maker would move heaven and earth to get it approved. I wish you all the best in your journey. Triple positives are indeed very special
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Thanks so much, ladies, for your responses. I guess I will need to wait and see if the doctor can win the fight with BCBS. Sounds like a tough drug on the body and maybe one that might not be that beneficial for me after all. Thank goodness for Herceptin! The surgeon changed her mind and will be putting the port in this Monday morning rather than waiting until the same day as my chemo starts. So I should probably try to relax this weekend and put breast cancer out of my mind for more than 8 minutes! Hehe! Wishing all of you a beautiful weekend!
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tld2017 - I have Blue Shield HMO, and am receiving Perjeta along with Herceptin, Taxotere and Carboplatin for my 6 rounds of chemo, which is being paid for by my insurance. My treatment is post-surgical, and I was node positive. The breakdown on my billing shows that each dose of Perjeta is $10,500 (which is crazy.....)
I've just asked my MO if I'll be continuing to get Perjeta along with my post-chemo Herceptin, and have not yet heard back on that.
This page contains a link to financial assistance if your insurance will not pay. https://www.perjeta.com/patient.html Good luck!
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Hi Margari,
I had the same chemo treatment drugs as you. 6 cycles but mine were pre-surgery. And I was node negative. I am almost done with my maintenance Herceptin treatments. I have had 7 of 9 Herceptin only treatments.
Thankfully my insurance covered all but $10.50 - $21.00 on my chemo treatments.
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Yes, it was originally 12. But I had total resolution with the chemo so he cut it back to 9.
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Yes, I did 6 Herceptin with chemo along with Perjeta, Carboplatin & Taxotere. Now I am on a 9 cyce of Herceptin only.
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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.
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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!
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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.
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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.
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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."
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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.
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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
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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.0 -
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
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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:
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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."
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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.
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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/
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Tess111, great quote! I think it describes our journey perfectly. Thanks for sharing 😊0
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hello Ladies,
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.
Rababasa,
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. 😁
Hugs
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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.
The time from diagnosis to the start of treatment is very overwhelming; so many appointments and information to sort through. Other than my husband, I initially only told those in my closest circle: my daughter, son, and brother. Once I had real facts and a treatment plan, then I told more people. I found the more people that knew my situation prompted so many phone calls, emails and visits. All this became a full time job and was taking away the focus I needed to get through what was coming. While I greatly appreciated everyone's concern, I finally had to get selective with my time.
I participated in a triple positive clinical trial at Cancer Treatment Centers of America in Zion, IL. I went there for a second opinion and was very impressed with my MO and the trial objectives. I found it was helpful to explore all treatment options and this one fit me as an individual. I mention that because we're all different and respond to treatment differently. This gave me hope because reading about triple positive in the beginning scared me. I learned to ask lots of questions of my medical team so I could make a decision that gave me peace of mind. It is so important to have complete faith and trust in your medical team.
I'm sorry you have to go through this experience on your own. Have faith that you will get through this and we are always here to help in any way we can! Once you are comfortable sharing your diagnosis with others, you may find other cancer warriors come into your life for support. For example, a wife of my husband's friend was diagnosed with lung cancer last year. I knew this woman but not too well until we started talking about cancer. She is now one of my closest friends and we support each other in ways I would never have thought possible. God gives us what we need at just the right time.
Good luck with your appointments and making decisions about where you want to have treatment. Feel free to private message me if you have questions about CTCA or my clinical trial.
Take care, hugs 😊
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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
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