Taxotere, Carboplatin and Herceptin
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Posting this around to see if anyone else had this experience. . . Had my first TCH yesterday and so far so good with the SE. But, when I went in for my Neulasta shot today - it had been cancelled. Not sure if it was just a burp between my doc and my insurance, but the nurse I saw today said that it's not uncommon for them to wait a few rounds in "young healthy" patients. (just wish they had told me that was the plan before I got there today . . . )
Has anyone else had this experience? I'm going to call my onc in the morning and get to the bottom of it - just trying to figure out if I really need to make a stink about it, or if this is typical . . .
Thanks ladies!!
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mckatherine - it may have been that your insurance is reluctant to pay for the Neulasta injection unless you start to experience symptoms that warrant the expense, and this is not uncommon. It is also common for some docs to do a "wait and see" on Neulasta. Some people can have chemo and do not experience a drop in white blood cells - sometimes because they are young and healthy, sometimes because they just don't seem to be affected that way. Your doc may not want to give you a medication you may not need, which is quite expensive, and that may cause unpleasant side effects op top of those you will have from chemotherapy itself. If I were you I would ask questions, but also ask for a CBC to be done in the nadir time period (around 7-9 days after tx) to check the status of your WBC. If your count has dropped it may be easier to convince your insurance company to pay for the Neulasta than to ask it to pay for the drug before knowing whether you will need it.
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All this talk has made me happy with mine, even if it looks like "Hobbit" hair! LOL curly, it is. Everyone seems to like it though, and it did not come in gray. Even my MO said, "Did I know you have dark hair?" LOL
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McKatherine to add to what specialK says many oncs don't give it till you need it. My onc is the other extreme she has us on all these meds to prevent SE from the start yet we may not even need them. I never used the 2 prescriptions I had for nausea because I didn't have any. So you may not even need the nuelasta.
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mckath- I did not have the neulasta shot until my third round and it was because I got sick, had throat infection, fever, and my white cells dropped...the my mo said I would got them after every cycle...I'm 36 and I think they wanted to want to see if I needed it. Good luck.
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mckath - I too did not get Neupogen (daily injections, same purpose as Neulasta) until my doc saw my whites drop to critically low levels. Do be sure your white count is tested during your nadir (sometime between days 7 to 10 - mine ended up being day 9) to find out if you need Neulasta. Also be cautious of being around anyone who is sick during your nadir and practice good handwashing techniques.
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McKatherine, same thing happened to me after my first round of TCH. I went in for the neulasta shot the day after and it hadn't been ordered. Later found out that insurance wouldn't pay until there was a need. Well I ended up with neutrapenia 2 weeks out and had to go back 5 days in a row for a similar shot (forgot the name of it). Then got neulasta after subsequent rounds.
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I was on Neupogen (daily injections for a week following chemo) from the very first cycle. I am relatively young (47) but I guess my dr (or perhaps the hospital policy) just routinely prescribes it anyways.
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I just had my 4th tx of TCH and so far haven't needed Neulasta. My onc doesn't order it unless my WBC/neutrophils get too low 2 weeks after treatment an so far I haven't needed it.
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That's great, steiner!
Does your oncologist test you every week?
You were a fast healer (drains out in a week) and haven't needed Neulasta. I think you must have one heck of an immune system!
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I do get tested every week since I go for weekly Herceptin anyway. Only one time (a week ago) did my labs get super low, .5 neutrophil count, but my onc still didn't order Neulasta or Neupogen. She just told me to lay low and avoid crowds.
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I never had to take the nuelasta at all and I am Sooo glad my onc was on top of it, the less drugs the better is what I say. Hope you are all doing good with as little side effects as possible!!
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SpecialK, You look absolutely stunningly gorgeous !! I hope, I hope, I hope my hair comes back like yours. My last chemo was 12/14/12. I feel everyday to see if I can detect any growth, and I think I do, but I'm just not sure. If I am really seeing what I think I'm seeing, I will have gray as well. I hope in 4 months I have as much as you. I am so sick of each and every kind of head cover I have. I only wear them when I go out. When I'm home, or sleeping, I wear nothing. Whether is 30 degrees or 70 degrees out, my head seems to sweat all the time. Drives me crazy.
As just some general info, I have made an appointment with a counselor to try to sort out the throngs of feelings I have about all this. Now that I'm past the chemo part, and everything seems relatively easy, I have more time to think clearly now, and I am having a hard time. My self esteem is in the toilet, and I have gotten to the point that I cannot stand to look at myself. With one boob, no hair on my head, or downstairs, and the pale look of myself, I feel just hideous. I know it's just something I have to go through, and it will get better, but having no friends where I live, I feel like I just need to talk it out with someone. The boyfriend IS NO HELP WAHTSOEVER !!!!!!!!!!!!! I have learned he has no desire to try to really understand how I feel, much less talk about it. He's too busy being focused on how hard this has ball been......................for him. I am hoping to get the ball rolling towards a move back to Texas, really soon, where I came from, and where I want to be. That will do wonders for me, I think.
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rickysgirl - thank you so much! Truthfully - I did not feel that way, so I understand your mindset right now. When that picture was taken I had made great strides, but I was almost 20 pounds heavier than when I started chemo, had few eyelashes, and was still adjusting to everything - I still had TE in, and was in the middle of fills, still receiving Herceptin. That pic was from a birthday party with family. All of this will slowly come together for you - you will grow some hair, get stronger, and figure out what you really want, and then do it!
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Rickysgirl, I hope your appointments with your counselor help. It seems like from day one that the focus is on the physical treatment, but nothing is done for us mentally! And I feel the same way as you described, hideous. Nothing about being boobless, bald and bloated is flattering.
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Thanks ladies. Ya'll made me feel quite good. I know I'll get there eventually. Funny, but I put on weight, too, and now I need to try to get that off. I'm just now starting to get some strength back, so I've bought myself new walking shoes and I'm ready to hit the road around my house.................when it stops raining. I went down to the mailbox last week, for the first time, without the aid of my cane. I used it mostly to help pull myself up the hills going to and fro, but it's been nice not to have to rely on it, AND, I can take my front steps like a normal person, going left foot down, right foot down, left foot down right foot down, rather than taking one step at a time with both feet. Ah, the little progresses add up.
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I found that I had to adjust my thinking to day-to-day after diagnosis so I would not get too far ahead of myself - it helped me not get anxious about progress, or the lack of it, with treatment plan and surgery set-backs, surprises, etc. During chemo it was sometimes hour-to-hour, lol! Once you are on the other side of treatment you may find a little happiness comes when you realize suddenly that you are less tired, in less pain, can accomplish things more easily. As you start to slowly feel more normal you can change your thinking from engaging in the fight of your life, to actually living your life! I know it is a process, and you may sometimes feel it is excrutiatingly slow, but I knew I had turned the corner when I found myself singing along to the car radio and dancing in my seat at the traffic signals! Just like you got through the active phase of treatment you will come through the after part too!
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SpecialK- thanks for that encouragement. I know I especially needed that this week!
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bren - I am glad it was what you needed!
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I'm just back from my regular doctors office, and I've just had to sit back and laugh at all the boob related difficulties I seem to be having. As if a unilateral mastectomy wasn't enough, I had to go in today to have 3 skin tabs burned off from under the one good boob. I became aware of them when the elastic from my under clothes rubbed one of them raw.......painful. I didn't know I had 3. They were burned and then scraped off, after, of course, I got 3 needle pokes with the numbing agent. That hurt the worst......until it wears off and I feel the burns. My boob area has turned on me !!!!
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Hi All - Here's a rather random question - but we on the Aphinity Trial Group were talking about how our pee smells strange. I'm trying to figure out if it's a Herceptin thing, or a Perjeta thing - so those of you who are just doing Herceptin now - does your pee smell weird after an infusion, and are you achy?
Thank you so much -
Marilyn
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Hi cvmarilyn, I've not had that problem, and I'm doing Herceptin only. I noticed it while going through chemo, BIG TIME. All pee and poop had a very strong chemical smell, but not with H. I haven't noticed any aches either. I wish I had something to tell you that would be helpful.
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cvmarilyn - I had the strange smelling pee during H only, so I attributed it to that. How fast are you getting your Herceptin? If 30 minutes, you might try making the infusion longer - preferably 90 minutes, to decrease the aching. It worked for me.
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Hi All! I'm new here. I was diagnosed on 1/30/13 with IDC. My oncologist has recommended chemo before bilateral mastectomy because of my fast growing tumor. She feels it will be better to start the chemo now instead of waiting for surgery and recovery so we can begin killing the random cancer cells that may be circulating before they have a chance to set up house somewhere else in my body. I'm starting TCH on Thursday (2/14). My tumor is ER/PR negative and HER2 low positive. The immunohistology test for HER2 was 2+ (borderline) the FISH test came back negative for gene amplification but low postive for protein overexpression. Has anyone else who's done TCH had this scenario? I'm wondering if TCH is the best chemo option for this tumor or if it is closer to a triple negative and would be better treated with ACT? This is something that researchers are just beginning to look at so there's not a lot on info on it. Thanks.
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cvmarilyn - I had weird pee smell with herceptin only. I thought it smelled like hair permanent.
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Heidi9256 both TCH and ACT are used for your type of tumor. There are pros and cons to both but the ACT protocal is just a tiny bit more effective but some of the SE are more challening (heart issues). You can talk to your onc about this or seek a 2nd opinon.
I know several women that had chemo first. The cool thing about that is they can see if it's working. If they scan you when your done with chemo and it hasn't worked then they will try something else. In my case, I had surgery first so I have no idea if the chemo really worked granted I'm still NED so I assume it did. Do they think it's in your nodes?
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Hi - Grandma V - you know it does smell like hair permanent - I kept trying to think what it reminded me of and that's it! So - SpecialK and rickysgirl - it's interesting how it effects you isn't it - I'm nt sure how quickly I'm getting the infusion but will check on Tuesday when I get another one - happy, happy, joy, joy...then back to work and "real" life Wednesday.
Marilyn
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I'm on just Herceptin now too and I am definitely noticing a strong chemical smell when I pee for a couple of days after the treatment. I also have an odd taste in my mouth for a few days after treatment as well. The achiness I was feeling during my last couple of chemo cycles has gradually gone away.
I had a visit with my Onc yesterday and she said that the results from my MUGAs are all really great and my numbers have changed only about 5% (from 63% down to 58%) and is still above the average 55%. She's postponing the CT scan though because my Creatinine keeps testing slightly above the normal range but then it's always hovered right around the top end of that range so it's not like some sudden thing to worry about. I don't like CT scans so I'm not all that put out about it being put off. :P
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Thanks lago. They do not think it's in the nodes so far. Nothing showed up on ultrasound and I've been examined and basically "felt up" by three different doctors in the last week and nothing is palpable. I'm having a PET/CT scan this week to check for sure. My tumor is in the lower quadrant in about the 5:30 position so I have a little greater chance of being node positive in the internal mammary chain even if negative in the axillary nodes. So likely some radiation after chemo.
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McKatherine - My onc was of the wait and see group, he also did not do weekly counts, unless there was an issue. He said you just assume the counts are low on certain times, mine always made it back up in to the normal-ish for chemo range each time before treatment, so he wasn't worried. He did have me take antibiotics prophylactically from day 7-14 each treatment, as I have lots of family, and sometimes it was hard to limit exposure, he felt that way we would be one step ahead should an infections start. I haven't heard of my oncs doing the prophy antibiotics, but mine wanted me to be able to live my life and get through treatment - he was/is amazing that way. A very good listener
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