Perjeta/Herceptin/Taxotere
Comments
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Wattior Princess: Thanks for the post! It did make me chuckle-and I really need it this morning. I am on day # 10 post 1st treatment. Feeling pretty nauseated today, but overall, I haven't had the side effects I was expecting on days 9-10.
Formgirls: So happy for your good scan! It is so encouraging for the rest of us!
It is sad that insurance issues cause so much heartache. There is enough stress in this ordeal without having to deal with all of this additional nonsense. My prayers are with each of you!
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My onc put in for pre-approval for the Perjeta prior to my tx knowing they probably would not approve it. His NP went to a dinner put on by Gentech at a very nice restaraunt a few days later. The whole dinner was to get the nurses up to date on everytihning Perjeta. it went just fine right up til the Q & A period. She raised her hand to ask about how Gentech would assist in fighting ins co about treating us long term chemo people. A lot other nurses joined in with her and he shut them down immediately. He said Genetch would not be getting involved in that fight at this time. The FDA approval is for first line only and they aren;t going to risk it being yanked by them aiding and abetting off label use of the drug. End of story do not ask again!! he said he would not answer anything else to do with that. He told them to get their people in trials going on now for advanced MBC patients previously on chemo.
My ins co has a series of appeals and I am on the last one now. if they turn this down I can appeal directly to my employer-which is probably what is going to happen. I had to do that last year and Ford made them pay for that tx. My onc office has assured me I will not be responsible for any cost of this tx. I stay in touch with that lady pretty frequently. At the bottom of my chart is past due amount and it is staggering-but I just ignore it. I am the first locally to get this combo out of trials and I think they were as eager to try it out on me as I was to get it. One of the appeals is a peer-to-peer review-they had him talk to a cardiologist-how's that for stupid.
They are not obligated to pay for a drug when the patient doesn't fit the parameters under which it should be prescribed. And face it-they could care less if I live or die-if I was dead they would save a lot of money. So I don't think they will be saying yes even if I get good scan results. And the idea of doing any other drug doesn't appeal. If this drug doesn;t work or they won't pay how could we be happy settling for a lesser alternative. For me it would be Navelbine-bbig deal.
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Hi everyone. I'm just checking in to see how the Perjeta gals are faring. Has anyone else had a scan since starting this regiment or do you have one scheduled? I have my 3rd tx this Friday (Aug. 31), and I have a scan scheduled for Sept. 17. I've really enjoyed this third week post infusion, because it's the most normal I've felt in three weeks, since before the last infusion. But for some reason it's been tough going emotionally this week. I'm still working full time, and I am always reminded what an impact work has on one's health. When thing are rocky at work, I really feel it physically, mentally, and emotionally and then beat myself up for not making my health a priority. ...Thanks for letting me unload a little. ...I hope all are doing well.
How are you doing, Formygirls? Any news on ongoing tx and coverage? I'm keeping my fingers crossed for you. Hang in there.
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Had to go see my PCP today because my bald head was covered on the back and top with nasty infected raised up bumps that became crusty-gross!! I had been trying to ignore it but it became very uncomfortable and looked like it was getting infected. I am sure my counts are still inthe basement so I didn't want to take any chances.
Just picked up the script and am really pissed. It is a 1 month prescription of anti-biotics taken twice a day-internet says pills cause great stomach distress-like I need that. My sister said it is one that is used to treat MRSA. Not sure if i will take it or not. She also gave me acream to apply 3 times a day for 10 days-and the tube is smaller than a lip gloss. Guess I will call the onc office tomorrow and see what they say.
Surly-I get my next tx Sept 4 and I think my scan is sched for the 3rd week of sept. Supposed to be 2 weeks after the tx he said.
Other than the crappy head I am feeling good. Taste buds have returned again somewhat so ready to eat holiday picninc food. I am making pickles tonight-bread and butter-new recipe-hope they turn out!!
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So sorry to hear that, Lilylady. Sounds really uncomfortable. I'm in the middle of 10 days of antibiotics for some minor infections and got so freaked out reading a c.diff thread here that I went and bought some Florastor probiotics as a precaution. The antibiotic I'm on is commonly associated with c.diff.
Sounds like we'll get scans the same week. Til then, take care!
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Lily Girl: I am so sorry about your infection. That's all you need! You seem to punch thru every curveball that's thrown to you, so keep on truck'n - you are a winner. Hope you feel better soon.
Surly: Glad that you are feeling better, but sorry that it has been rough emotionally. Hope that this passes soon. Good luck on those scans, and please keep us posted.
Best to each of you in the perjeta world. SUE
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lily you are a true trailblazer. i hope you get the approval from the insurance and i hope this tx knocks the heck out of the cancer. we all need a brake
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Lily and Surly,
Hope you both feel better. One month of antibiotic is lot Lily!
I am doing ok and tx 3 has been easier than tx 2. I am tired but nothing like tx 1 which were among the worst three weeks of my life. My main problems continue to neuropathy in my hands and this wierd flushed feeling in my face in addition to fatigue and constipation or diarhea depending on the day! Right now my main concern is my brain mets and trying to get some tx for them as I have some new mets there. My team of oncs seems more likely to treat them now given my response to Perjeta. They did not want to treat brain if systemic Chemo was not working.
On another note, my hair seems to be growing as evidenced by my mustache and chin hair!! My appetitie is back and I am making a list of foods to eat in San Diego every weekend. I love food and it provides a distraction right now. -
They think I got the folliculitis because of the stubble of my hair growing in. I lost mine so fast this time and last year when I lost it when it did grow back it was this wierd fuzzy looking stuff that didn;t look like hair. I have regular hard stubbly hair growing-but only on the back and top. Nothing on the front and side. And no way am i taking a months worth of anti-biotic and risking c-diff. When i get my tx Tues I will talk to the onc and see what he says. Other than my crsuty head I feel really good right now. Just got cavities filled today-never had a cavity as an adult-my face is numb clear up to my eyes=really wierd. They were small but just hearing that drill going makes my skin crawl-I was very brave and got a shiny new toothbrush when we were done!!
formygirls-it is so good to hear how upbeat you are and so glad they are working on how to treat your brain mets. You have already done WBR haven't you?. And I hear you on the food. Seems like my tastebuds make it back on the third week so I have been hitting all my cravings hard this week. Fresh corn on the cob and tomatoes from the garden are my supper every night. Just made pickles so can't keep my hand out those jars either. Also glad to hear 3 is better than 2. 2 was better than 1 but still wasn;t that great-keep getting fevers during the second week and stupid nosebleeds while I sleep. I got my energy pills refilled today so planning on what to get done starting tomorrow. It has been so nice here in Ohio i have been living under the shade tree with library books and lemonade!!
Surly-I am so excited about getting scanned-hope you feel the same way. I just know the results are going to be good. Good luck in the chair on Friday. Hope you make it thru the holiday weekend feeling OK.
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Formygirls, do you live in San Diego or are you visiting there or getting tx there? My brother lives there and I love visiting. I'm craving the fish tacos for Taco Tuesday at the Brigantine in Del Mar.
Lillylady, what energy pills are you on--Ritalin or Concerta? I know I've read some on some threads here that some people are on these. Any downsides to whatever it is you're on?
I didn't shave down to my scalp and am wondering if I should have. I have wispy creepy 1/2 inch hair and maybe a little more fringe in the way back. My husband did it for me and proudly exclaimed he was giving me a mullet. I look in the mirror and think my entire head looks like a thumb with two eyes a nose and a mouth drawn on.
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Surly-I take 27mg of Concerta. Not every day and never when I feel bad-because why waste it on a bad day. It makes me feel like I did before I got cancer. I have always been a buzzsaw. up at dawn-needing little sleep always busy. Chemo-me just wants to sit somewhere and think about what i used to do.
It doesn;t make me feel buzzed but I do have to take it early in the day or I can't sleep at night. I never need a nap when I take it. ince you are still working it might make a world of difference for you. If i know I have a big day ahead or it will run long I take 1. A 30 day supply usually lasts me 2 months. I highly recommend it-best thing I ever did. If I do go back to work before finishing this tx I will probably take it every day. Making that decision after the scan. hearing formygirls say her 3rd went so well makes me think I might be able to do it.
Hope this helps.
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Recently started this regimen due to liver, mediastinum, and neck lymph node mets.
Some very mild symptoms of peripheral neuropathy and bone aches afte second treatment. I started a B6 vitamin, biotin, and L-glutamine powder to alleviate some of the taxotere side effects do I could stick out the treatment. Anyone hear that taking those supplements was a bad thing? I know a number of women who took those, but didn't know if it would interfere with the chemo or monoclonal antibodies. -
Surly,
I live in San Diego and also get tx here.
Welcome Nicole,
I also have the same three supllements but am very era tic about taking them. I take hem once in a while when I remember. My onc is ok with them.
Surly and Lilykady,
I am also on energy pills. 10 mg of Adderall. Not sure if it helps. -
Hi all. Just thought I'd report back post tx #3. It was uneventful and was a 5-hour day; not bad. They cut my Benadryl in half, since I've not had any reactions so far, but still gave in to it and dozed a bit. Felt good enough to run errands to Costco and Petsmart afterward.
I met with the PA to discuss a few things, including switching to Aleve from Morphine, which I'm going to try (big bottle from Costco). And I asked about getting Concerta. She will talk to my onc Tuesday and see what he says. She thought it was a good idea, since all I do right now is work 45-50 hours a week and sleep or walk around in a stupor the rest of the time.
I also talked to her about my severe leg muscle cramps that I get multiple times a night for several nights the first week post-chemo. She had my potassium, calcium, and magnesium tested. I saw the results and they're all in the normal range, though on the low-middle end . She didn't get back to me about whether I ought to take supplements. She also checked the cortisol, which was low. I think the danger is if that is high, but I need to hear from her.
As I understand it, none of you are experiencing that muscle cramp side effect like that, is that right? If I'm mistaken, please chime in. ...I do recall one of you--camillegal?--mentioning it but now don't recall.
Nicole and formygirls, I'm wondering about the supplements, especially L-glutamine. Did you onc tell you to take that or OK it? I don't know much about it but picked up on it that there isn't a ton of research on it. Do you feel it helps? I did take B-6 for a while because of Tyker-Xeloda SEs. Can't say whether it helped.
Have a nice weekend.
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My cousin, who has been dealing with ovarian CA for a number of years and doing very well, was told to take it by her onc. I took it in '09 during my first "run " with this. I had TCH x 6. Had NO issues during that treatment. I had a neulasta shot after each one as well, and was able to do everything (and I have 4 young sons). My onc said it was ok, but she didn't know much about it.
Had terrible bone aches/headaches when I went through this first round with taxotere / herp/ perjeta for the newly diagnosed liver mets. It happened so fast, i didn't get a chance to start he stuff, not to mention being a little overwhelmed with the diagnosis.
I take 10g three times a day in the powder form five days after chemo.
Minimal aches this last cycle. -
Surly,
I asked my onc about the supplements and she was neutral about them. Said there was no clinical data to support usage but did not think they would harm either. She said it was ok if I wanted to try. However, I use them very inconsistently so I cannot say they help. I do not feel different when I take them. -
I am 3 weeks out and no real side effects. Start round 2 Tuesday. I am far too busy and do not have the time to dwell. I have a lot living to be getting done. Happy Labor Day Weekend. xoxoxox
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Nicole0714, Am I understanding that your in your second line of treatment, and are getting the Perjeta? I thought I understood that they weren't using it unless it was your first time w/herceptin. If so maybe there is hope for me yet. I go to the onc on monday and for another infusion of Herceptin. I guess i'll keep prayin' for some added help one of these days. sounds rough the first few times but, i'm a willing partisipant.
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Yep. I was stage one, triple positive in '09 when originally diagnosed. Got herceptin then, finishing in '10. Now with the liver mets diagnosed this July, I was started on perjeta. My oncologist is awesome, and very aggressive. She was very adament about getting me on perjeta FIRST.
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Lori,
Unless being stage one and receiving herceprin didn't "count". Not sure if it's first-line with stage four or overall. -
On my way to chemo this morning-hate the very thought of it. Love visiting my doc though.
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Good luck Lily, will be thinking of you and sending good karma your way. SUE
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Today was the day. I went to the Onc and found out that they approved me for Perjeta. They added it today with my herceptin infusion. I guess we'll see how well it goes. In todays conversaton (with the Onc) it was brought to my attention that I could talk to a surgeon about removing my affected ovary. While I was in the hosp. and diagnosed with the mets (in March) they were "sure" that although it was affecting my ovary/bladder, it is my orighinal breast cancer. Now the Onc seemes to have some hesitation as to weather or not it is ovarian. This makes me want to search for another opinion, and wonder just how different my treatment might be. Cleveland Clinic.............I think i'll be calling.
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Dear LoriKnous - I am so glad that you have been approved for the perjeta - a victory. Please keep us posted - I have alot of hope pinned on this new drug. Good luck, whatever you decide, and best to you - SUE
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My tx went well yesterday-bloodwork all in normal range except for the red stuff so going tomorrow for Nuelasta. it didn;t seem to cause me any problems last time so I will do the Claritan thing again. If I do well with this tx I am thinking about returning to work. Since we are heading into fall the temp in our plant will be more tolerable. I still think there are about 4 days that I won't be able to do my job-based on how the last one went. I also realize they are cumulative. He wants me to stay off til we get done with the Taxotere part. Disability pay sucks and that is what is driving my decision more than anything. I am lucky we have it but it certainly makes thngs tight.
I am waiting for them to call about my scan appt which is supposed to be in 2 weeks. Onc told me yesterday all ins co are fighting the scan frequency right now. Even ones that never balked at them before are being difficult so they are waiting for the pre-approval before scheduling. My co fights paying for everything so hoping we can get this done. We are hoping if the results are good they will decide to pay for the Perjeta. As of now they are only paying for the Taxotere and Herceptin.
Lori-so glad you got yours approved. I really believe this is going to be a lifesaver for many of us.
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Did anyone see the article in this week's Newsweek. It talks about the cost vs. benefit. Interesting article.
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LoriKnous... Ovarian and fallopian tube cancer run together more than once thought according to my onco/ GYN. You should get the opinion of a Gyn who specializes in cancer. MDAnderson in Houston told me with my first round than any new tumor had to be biopsied for 2 reasons: could be completely different cancer or could have changed receptors. Mine in my spine changed from ER/PR + HER2- TO ER+PR-HER2+. So my treatment is different this time around. Best of luck...2nd opinions either confirm the path you are on or present you with ne info to think about, all I say is do what makes you comfortable. Best of luck....enjoy your day,that is the most imprtant on each good day!
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Surly...shaved my all the way, can not stand to shed, this time or last time. Plus gives me a little feeling of control. Buzzed to a zero about a week ago. Now I have little patches coming out in sorta circles making me look like a dog with the mange. Cracks my kids up. Got some lovely head wraps online at myhairwraps.com. they look like nice scarves but without the tying. Not hot either like some of my previous ones. My wig always itched and made me hot, therefore I never wore it.
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hi ladies. i hope you are all doing well. i have a question - i am on day 15 of my 2 round. i am still feeling so weak and the diahhrea has not stopped. i no this is kicking everyone's but really this is ridiculous. i quess i am just wondering how everyone is doing. and yes, the entire insurance thing is making us crazy too. my husband and i signed our lives over and we are making payments. thats all we can do, make a payment every month. my girlfriends are having a speghetti dinner to help out too. it is just not fair what the fda, insur. co and genetech are doing to all of us.
michele
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Michele,
Sorry you are feeling so bad. Have you tried Lomotil for diarhea? That helps me. Is you dr making you pay the entire amt? That is a lot!!!
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