Taxotere, Carboplatin and Herceptin
Comments
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LisaAnn: I'm soooo sorry to hear about your dog. I am such an animal lover and it breaks me up to hear about such things. I had to smile though to hear about your puppy. Molly Mae! What's so funny to me about that is that when we told my husband's mother that we were naming our daughter Molly Alice (after my mother (Molly) and my husband's mother and my grandmother (both Alice)), she said she didn't like Alice and that she thought we should name her Molly Mae. I laughed and told her I refused to name my daughter Molly Mae Miller. Too many M's!!
) I have to ask though, why on EARTH would your treatments be $45,692 each? Holy cow!! Are you getting solid gold in your veins, or what?? ) I can't even believe a hospital could charge like that!!Joia: My Oncologist said exactly the opposite. She said the Adriamycin in the ACT is really harsh (everybody in my chemo infusion room calls it "The Red Devil"), that it makes people sick and then of course there is the heart damage. She said TCH is much less toxic and people usually aren't as sick (plus, less heart damage risk). She did say that the effectiveness was the same unless you were positive for a certain protein receptor in which case the ACT would apparrently be the one you'd need. I can't see risking the Adriamycin heart damage just because your Oncologist says they have "more experience" handling the side effects. If that is indeed the only reason they would recommend it, that sounds really bad to me.
( I know that I had a really bad reaction to my first treatment but I firmly believe it was the Neulasta I reacted to and not the actual chemotherapy drugs because my biggest problem was extreme pain and weakness, both a Neulasta side effect. I've had nearly no problems with nausea and the little twinges of queasiness I got were easily controlled with meds. I've been able to eat the whole time although sometimes I just didn't feel like it so it was harder to make myself do it. I never threw up. I've had no constipation or diarrhea either. I'm being switched over to weekly treatments primarily because if I do that I won't need the Neulasta and that's what we think knocked me out before. I guess we'll see!!Terri: - God yes, the bills are crazy. My mental tally says that it'll be over $100k in medical costs by the time I'm done. How do people who don't have insurance get proper treatment? These kinds of costs could cripple a family for life! I have to ask you though, how did you get away with no Neulasta on TCH? I was only told that I wouldn't need the Neulasta if I do the weekly treatments but need it on the 3 week cycle. How did you get away without it entirely? 'Splain it to me Lucy!
)Aly.
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Oh, could one of you explain to this newbie all your math calculations? What is 4 x 2 + 4 x 2 = 16 weeks and 4 x 2 + 12 x 1 = 20. Of course, I understand how the math works out (duh!) but what makes up the 4 x 2, etc.? Am I even explaining that right?
) I was having TCH every 3 weeks times 6 treatments (18 weeks) and that's about all I understand (lol!). 0 -
That's funny:). My nick name is two strands!
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My oncologist told me that he felt TCH was the best treatment for me, but he also said that Adriamycin can damage one's heart and at age 53 he wanted me to live a long life without heart damage. I've been afraid of that chemo ever since he told me that. In fact he told me that his office was using it less and less. Anytime I hear of someone one it I cringe. I'm sure it doesn't effect everyone, but I'm thankful it wasn't recommended for me.
I had to get a print out of my charges for AFLAC and I was shocked, even the neulasta shot alone is $3,500. I am so glad I got the AFLAC cancer policy 3 years ago. It's covered far more than my co-pays and deductibles. Mary
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Had my first treatments on June 10/11. Started with Herceptin on the 10th and had Carboplaten/Taxotere yesterday. Tuesday was a walk in the park. Problems began since having C/T yesterday, I have been terribly shaky, weak and have had moderate nausea. Taking meds as prescribed and am hoping to begin feeling better soon.
Anyone had this experiece?
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Casey...I had the symptoms big time, like a really bad flu, but mine were delayed. Like I started last Thursday, and didn't start going down the slippery slope until Sunday night. In fact, I was an idiot and did a low tide bike race Sunday morning (but I felt weaker than usual). Then Monday and Tuesday, I was in bed-level dogmeat. Then yesterday I was up doing stuff, but got tired. Eight days out, today, I feel great, except that my mouth feels like I've been in a habanero pepper sucking contest. Herceptin is known for flu-like symptoms. Mine was exacerbated by the migraine/sinus headache from hades. My nurse had never heard of anything like that headache before, though, so it could have been just a paradoxical reaction to one of my many meds. Blessings and energy your way!
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Do not be surprized at the fiery trials inflicted upon your insurance companies by these drug therapies! My husband is a pharmaceutical chemist. Taxotere is still on patent...hence its ridiculous price. Herceptin is a biological and very new. So there you go. Also, it's capitalism. They'll gouge for what the market can bear.
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Jamie: I love your nickname. I got a good laugh over that.
Aly: My math. Number of treatments by cycle (weeks). So TCH is usually 6 x 3. With AC/TH you start off with AC 4 times every two weeks then move on to TH for 4 times every two weeks (or weekly as they have recommended to Joia).
And I'm not sure how I got away with no Neulasta. I think maybe my oncologist is a "less is more" kind of person. She didn't have me get an echocardiogram before treatment. I always saw the NP first, then saw my onc during treatment since she didn't come in until the afternoons. NP -- Have you had an echocardiogram yet? Me -- No, Dr. didn't say I needed one. NP -- You have the risk of heart problems, you should really get one. (She obviously then writes in her notes that I haven't had an Echo and asked about getting one). Onc: I see you were asking about an Echo. Me: No, not really...... Anyway, she finally wrote orders for me to get an Echo.
I had a CBC mid-cycle after my first treatment. WBC 1.5, NE# .10, RBC 4.14, LY# 1.00. Those were the only low values. After that I didn't bother with any mid-cycle tests. I think because I went into treatment really healthy my onc. didn't think it was necessary for me to get a $3700 shot each time. Maybe it's a profitable medication to prescribe :-) and that is why they give it. I was told to call if I ran a fever. I never did.
Kay: Good luck getting through the side effects of your first treatment. I had shaking chills two days after my first three treatments -- I blamed it on the Herceptin. Dr. on call (I ended up calling at 1AM the first time this happened) said to take a Tylenol and see how I was in the morning. Since it was fall moving into winter, I got a heated mattress pad and took the Tylenol for future episodes.
Terri.
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Aly,
Yes the $45,692 is per treatment of TCH. I go the the University of Chicago for treatment, not that the treatment is any different from anywhere else! The "agreed" upon rate between insurance and U of C is $32,986. I don't understand it but at this point it doesn't really matter since my insurance picks it all up.
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Wow LisaAnn I really am stunned by that. Thank God your insurance pays it all! Our insurance pays every penny as well and for that I am definitely very thankful!
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Thanks Aly and Mary for your input. I saw my onc's sidekick today (a training fellow) and she said that my onc would be fine if I wanted to do TCH. She agreed with my rationale for prefering TCH to AC/TH and didn't have a convincing argument otherwise. I plan to speak with my onc tomorrow to see what kind of argument she gives. Could it be that TCH is so new. If there is the risk of leukemia with AC in 7-10 years, do they know what the risks of TC are in that time period? My onc said that AC has been in use longer so they know what they are dealing with.
I was also told today that if I did TCH that I would not need Neulasta. I will ask tomorrow why that is. They told me yesterday that Neulasta is $7000/shot.
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Shel; Great to hear your doing better!!
Joia; I had my first treatment June 2 of TCH. The first week was tolerable, I also had steroids and anti-nausea meds with it. I never got nauseated, just lots of bowel issues. Also, I had the Neulasta shot the day after. I didn't really have much pain in my bones from the shot until about two days later. Advil helped. I was pretty much exausted all week and felt like my tongue was burned and coated with some sort of toxic goo!!! By day ten I got my taste back!
Day 11, today, i went to the gym, ran 3 miles on the treadmill and felt like superwoman!!!!
I only hope that with every session I will feel this good 10 days later!
I have 5 more to go. Every 3 weeks for TCH, and every week for Hercp.
Good luck and keep us posted with whatever you decide.
As I've read, everyone is sooo different even on the same "cocktail"!
Donalee
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Joia: I'll be interested to hear what your onc says about Neulasta. I think my onc mentioned that with 3 weeks between TCH treatments, your immune system has a chance to rebound on it's own before the next round (low point 10 - 14 days). With AC/TH and only two weeks between treatments, the immune system needs a boost to recover before the next treatment.
Donalee: I'm glad you are feeling better and working out. Enjoy the next 10 days.
Terri.
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Donalee; I'm stoked to hear about your exploits in the gym. I'm hoping to make it to yoga in the morning myself, if I'm feeling well. I'm still having to "manage" the nausea. Did anyone have nausea past a couple or three days? Also I'm having XTREME tongue and lip blisters. I'm sitting here at 2:30 a.m. with an ice cube in my mouth. I don't think I'm going to be able to handle this for the next three months. I'm really grateful, though, not to have blisters on t'other end!
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Hi Everyone,
I finished tx 3 of TCH last week and just thought I would share my experience since people are compaing and trying to decide. I get treatments on Thursday- take steroids by pill the day before, day of and day after, premeds are for nausea and more steroids, benadryl and tylenol - I feel fine the day of treatment, Friday and Saturday I am kind of woozy feeling- probably from the compazine for nausea and ambien for sleep. By Sunday I feel OK, a little tired and by MOnday I usually go back to work.
I am going to ask about using Tylenol PM instead of AMbien because I dont like the woozy head feeling. I also walk alot- usually 3 19-15 minute sessions each day the weekend after chemo and then 60 minutes per day the rest of the 3 week cycle. I drink alot the 48 hours after chemo to help wash the waste out. Not much appetite the first week after chemo but then I get a pretty normal 2 weeks. No constipation but several days of diarrhea each time.
I take Neulasta on Day 2- I didnt on round 1 and ended up in the hospital with an ANC of 216. I get moderate leg aches for Saturday -Monday but the walking really helps this out also.
My doc was excited about TCH over the ACTH protocol because of the heart problems- I am 47 and she did not want to cause a lot of lifetime heart problems in trying to cure this.
I also do some dietary stuff to help- eat an Iron and potassium rich diet the first week after treatment- trying to avoid taking procrit again and becuase the diarrhea typically depletes my potassium. I had to have both iron and potassium supplemented round 1 when I was in the hospital but the dietary changes have handled it so far on rounds 2 and 3.
Kristy
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Hi Shelb, Sorry about your blisters, I had a sore on my lip after the first tx only. Hopefully the same will be for you. You asked if anyone had nausea longer than 3 days; that would be me. I usually have nausea days 4 or 5 through days 9 or 10. Each one seems to be longer, but I was told that was very unusual. I had severe morning sickness with both my pregnancies (many moons ago) and that's what they connect it to. I even get nausea before a bad hot flash. I've had emend, tigan, ativan, compazine, zofran, and reglan. Zofran helps a little, the rest not at all. I get the most benefit out of Decadron, so I will be taking it longer with my 5th treatment. I hope you don't take after me. I am fortunate, however, that I have zero s/e from the neulasta shot. My doctor talked about switching me from taxotere to taxol for the last 2 treatments. I hear woman complaining of pain from that and I figured with my luck I'd still get sick, plus have the bone pain so it's not a chance I want to take. I can get through 2 more treatments, at least I hope so. Hope you get some sleep, try bag balm on the lip blisters, it helped me a lot. Mary P.S. you and I have the exact same dx, you were just diagnosed exactly 3 months earlier.
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Mary: Thanks so much for the words of encouragement. I guess I'll have to get some of that bag balm stuff. The only thing that really works for my nausea is the OTC Bonine for motion sickness. I was taken off of Zofran because I had a ridiculously long-lasting headache (about 72 hours) and constipation. Compazine helped a little, but made me really unable to keep my eyes open. The funny thing is, I really didn't have much morning sickness at all with my 5 full-length pregnancies, and when I have the flu, I have to MAKE myself throw up. Ha!
Kristy--You are a trooper. If I would have had to go to work days 4-6, they would have had to literally wheel me in a wheelbarrow, plant me, water me, and bury me. I was a VEGETABLE. And you're out there kicking butt. I mean, I've pretty much been kicking butt the last couple days, going everyplace and having dinner parties and stuff, but I still have to watch that I take that Bonine BEFORE my stomach starts to churn like an old-timey washing machine. You know what I'm saying?
I had this delusional thinking that since I work out regularly and keep a strict dietary program with a nutritionist, supplements, the whole nine yards, that I would sail through this easier than the average person. (Actually, that was the same delusional thinking that led me to the conclusion at one time that I really wouldn't get breast cancer.) Maybe, despite a lot of the claims I read, it really doesn't matter much WHAT I do. I'm wondering now if it's just luck. Because if I had to put my first cycle, so far, on a range of experiences I've read here, I would put it a little below average. I pray to God that it doesn't get worse each time. If this skin thing gets worse, I'm going to need skin grafts.0 -
Shel: Have you called the doctor's office about your blisters? They have probably seen this problem before and might have some advice for you. At the very least, they should probably be aware of all of your reactions in case there is something they want to tweak the next time.
Terri.
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Hi All,
This is my first time here. I received the "news" on 5/21 and had a bilateral mastectomy (my choice to remove both) on 5/30. I start my first tch treatment in 2 weeks. My onc has suggested that I join a trial for Avastin. Is anyone involved in this trial. I can't find too much info on it.
Michele
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Terri: I called this morning about the extreme blisters and all-mouth soreness. The nurse called me back and said that that was not usual and neither is the two days I spent lying down, moaning and puking and wishing I would die fast. She said they probably toxed me out on too much Taxotere for my size and that they would definitely decrease it next time. Meanwhile, I have to swish four times a day with a mixture of benzocaine, antibiotic, antifungal stuff, and cortisone. We're hoping my mouth doesn't actually become infected. I'm starting to feel a beginning of a burn between my legs, and I'm hoping it's not the beginning of what's going on in my mouth. If it is, they'll just have to put me on morphine or something...Not a happy day. Hopefully, though, I've hit bottom and I'm on the way back up. I guess I didn't call earlier because I really thought all this stuff was just normal side effects and I should just deal with it. Believe me, I will never "deal with" anything again!
To all you ladies who are soon to start treatments: call the doctor even when you don't think you need to. Tell them everything. Be obnoxious. I have spent a week "dealing" with things that no human should have to endure. Once you get your doctor bills, you'll know how much you're paying THEM to deal with it.0 -
Mobay, I've never heard of Avastin, don't know if anybody else has. What I read on Chemocare.com was that it's used for colon/rectal cancer and a certain type of lung cancer but another site also said it has recently been approved for metastatic breast cancer, that it's for folks who have not previously received chemotherapy for their breast cancer and that it is used in combination with Taxol. I also read: "Avastin is a cancer medicine that interferes with the growth of cancer cells by blocking the formation and growth of new blood vessels in the tumor which slows their growth". I can't find anything that talks about trials on non metastatic cancers. Also what I read was that it can have some severe side effects so you'll probably want to do a bunch more research before deciding.
Anybody else hear about this?
Shel: Sounds like you just learned the same lesson I did; don't suffer, call the doctor.
) I'm glad you did. You mentioned you had a lot of steroids so what you're feeling "down there" could be the beginnings of a yeast infection caused by those very steroids. I hope it's as simple as that and that you don't get anything more painful!BTW: I have a new song to add to your musical (can't remember if you thought of this one already). It's "hairs on my pillow, pain in my heart...a parody of "tears on my pillow" from Grease. That's how I felt when I woke up this morning. Seems The Great Follicular Fallout has begun (eep!).
Aly.
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Aly; I used "Taxo-teres on my Pillow" for people who get excess tearing from taxotere. (Of course, I'm fortunate enough to have DRY EYE.) But yours is a good suggestion too. You mention the follicular fallout. My face already looks like I'm a Hiroshima victim from this bizarre reaction to taxotere I'm getting. I think I will restrict my wanderings to church (where everyone knows and loves me) and the doctor's office once the hair thing happens. Maybe in my semi-reclusive existence, I can rewrite my novel while the world goes by. I've heard it said that The Grapes of Wrath was written in 35 days. Being a hermit can be productive...I really hate that look people give you that says, "She isn't quite right." So I'd better get out a few places in my remaining week. It'll be a busy one. I'm going to make a list.
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Shel: don't be a hermit, you have nothing to be ashamed of! My sister told me that when she sees women in the store that have lost their hair, obviously from chemo, the first thing she thinks is "you go girl!". I'm sure most people think the same. As for the ones that look at you like you're some kind of freak, well, screw them I say!
) Let them hope to God they never get cancer!! I will go out with my bald head under a hat and hope that seeing it prompts someone to go get a mammogram! I've already been told that I inspired one of the waitresses at our favourite drive in burger restaurant to quit smoking. If I can inspire one person to do something to take care of themselves every time I go out with my bald head, then it'll be worth it. When I was first diagnosed I told two of my friends in the midwest to be sure they got mammograms. One of them gave me the spiel about how she goes every other year and that she's fine, etc., etc. I told her every other year wasn't enough. Within a month of me climbing on her about it she had found a lump in her breast and was diagnosed shortly thereafter with IDC. I hate to think what might have happened if I hadn't given her the lecture - she might not have found it until much later in the game! You never know who's life you might save because of your own journey through diagnosis and treatment. Now I'll be able to help her through this because I'm a little bit ahead of her on the road. Maybe it'll keep her from being so scared.I dunno what's up with the redness from the Taxotere. I have a big red blob on my arm where the I/V was and a big shiny red stripe like a scar across it from where the tape was holding the I/V in. I'm not sure why we react like that to the Taxotere but it's the strangest thing. My face was all red like a sunburn a few days after treatment and my chest too. My chest also broke out in zits. I looked just lovely (not). It did go away after a few days though so hopefully yours will too!
Aly.
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Hey ladies,,,,,,,,,,,can I just say one thing.
OMGGGGGGGGG I am soooo very proud of each and everyone of you. You all have such good attitudes and a great sense of humor. Thats what we all need when dealing with cancer.
A huge kudos to you all.
And you are all correct..........do not hesitate to call the doctor for anything,,,,,,even if it doesnt seem like a big deal or you are thinking its nothing,,,,,CALL the DR. Aly is right when she says that also.
I dont know anything about Avistan......sorry bout that,,,,,but cant help ya out there.
Have a good weekend gals,,,,,,,,,,,,,and keep your chin up.
Can I say again how proud I am of all of you. Kickin that cancers butt,,,,,,,,wayyyyyyyy to goooooooo.
Cindy
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Shel: I'm glad the doctor is now helping you with your side effects. It's a tough lesson to learn. It took me a while before I learned to call on anything. You had good advice to those just starting -- don't be afraid to call. That's what they are there for.
I think I had both a yeast infection and a UTI after my first treatment. I say I think because I hadn't yet learned to call the doctor when something didn't seem right....
Do you chew on ice during your treatment, especially during Taxotere? I did that to avoid mouth sores. What song will go with the IV Shuffle you end up doing because you've consumed so much water and have to go to the bathroom all the time during treatment?
Michele: I sat through one chemo session with a woman who was taking Avastin. She was being treated for a breast cancer recurrence. She felt she was getting a lot of benefit from it. This was before they approved it for BC and she was worried her insurance would stop paying for it. She said she had minimal side effects from it.
Aly: I'm sorry to hear you are now experiencing the great follicular fallout. It's not a fun time. If you find my eyebrows let me know. I'm still looking for them.
Terri.
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Terri: The hairs that fell out of my head this morning mentioned your eyebrows. They said they were tired of all the plucking and had gone off to join the rest of the chemo liberated strands at a colony in Vermont where hair dye and tweezers are expressly forbidden.
<smile>
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ahhhhhhhhhhhhh The great follicular fallout. I remember that so vividly. It started coming out in clumps,,,,,,,,,then I just had my family shave it all off. It was too depressing watching it come out in clumps like that. That was one thing I felt I had control of.
Cindy
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Here's another one. Does anyone's nose just run continually and/or burn from the inside? Or is this just part of my unique hyper-toxicity to toxotere? Sorry about the recent lack of songs. My sense of humor has turned fairly dark and totally not ready-for-the-family-channel the last 24 hours or so. I'm happy that Aly wants to help people get through this. I just need a punching bag.
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Sorry Shel, I'm not trying to come across as smarmy or anything. Just trying to keep my own chin up really.
) I hope you feel better tomorrow!
Aly.
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Thanks for you input Donalee and Terri.
I spoke with my onc again about my concerns about AC/TH. She said she is totally fine with my doing TCH if I am bothered by the cardiac and leukemia risks of AC (or as she said, "the perceived risks"). She said again that there is more data on AC/TH and but that she thought I would do well on either. She still said that, in her experience, more women get wiped out by TCH.
She recommended that I get Neulasta even with TCH every 3 weeks. I will try it the first go round. After that I plan to try acupunture. I met with an onc in the Complemenary Therapies dept who said that acupuncture has been shown to be effect in getting WBC counts back up.
I start TCH on Monday.
Shel, I am so sorry that you are having such bad side effects. I can completely relate to the "delusional thinking" you mentioned. I, too, have a crazy-healthy lifestyle and thought I would never get breast cancer.
-- Jo
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