Taxotere, Carboplatin and Herceptin
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Shel: I hope you were able to call the doctor and get some different meds to try today. I agree with Aly -- there are a lot of different meds to try for nausea. I had Ativan (generic) for when I didn't mind being sleepy (I still use it as a sleep aid periodically). I was told to take that for "break through nausea" -- like when you really thought you were going to be sick. Kytril was to be taken to prevent nausea altogether. I took that one day for each of my treatments (usually day 3 or 4). Expensive stuff but it works. Then I was also given Compro suppositories for severe nausea and if you couldn't keep anything down. I never had to use the latter.
Aly: It sounds like you turned a corner. Congrats on getting through the worst part of your first treatment. I hope you come to a comfortable decision about future treatments.
Nan: I'm not sure what my steroid dose was. I was hyped up the day of treatment, got the flushed face the next day and crashed day 3 in the evening.
I'm celebrating the results of my fasting lipid test. I haven't had my cholesterol tested in a couple of years. My overall level (141) is lower than it was 2 years ago -- by 40 points if I remember that last test results. And even then it was within range. I guess I'm eating a lot better after chemo. Still love my chocolate though.
Terri.
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To all of my watchful angels who urged me to call the doctor: I didn't even have the strength to read your comments last night, and our system has been down. But that's exactly what I did. I was using Ondansetron for nausea--those pukey little dehydrated blobs of cotton candy-thingies. They weren't cutting it. And guess what? My chemo nurse said they cause both constipation and HEADACHE! Ta Da! So I started using my Compazine instead, and it works a little better. The nurse also suggested that I get meclazine over the counter as a back up. They're also having me prep with Emend next time, instead of whatever it was in my IV. And I have a prescription for Compazine suppositories, in case all else fails. So I think that's pretty covered. I'm keeping down water, iced green tea, chocolate pudding, and popsicles. Not exactly health food, but it's keeping me out of the ER. I have all my kids home right now, too, just kind of buzzing around, watching movies with me and entertaining me with the Brownian motion of their exuberance. Haven't quite found the solution for the headache, yet, though. Donalee, it was interesting that you got the headache, too. I'm sort of feeling though that mine's of a different origin, though, because I've never been anywhere near anemic. The doctor is betting on sinus, because we've had a wave of low barometric pressure and the chemo blitzed the mucus membranes. So they've ordered me a steroid nose spray, Nasonex. I'll report on whether that works. And I am happy to report as well that the Tar Pits have loosened. It's amazing how the human body adapts to this stuff. I guess the toughest part is taking the roller coaster ride the first time, because until you do it, you have no idea. Sort of like pregnancy and childbirth...but a lot less fun. And Nan...thank you very much for going into nurse mode. When I start joking about show tunes again, you'll know I'm back in the game!
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Has anyone suffered extreme GI tract issues except me? I am through three of six rounds every three weeks. I am soooo constipated and am living on Senokot and Milk of Magnesia. My hemoglobin level also dropped and I needed a red cell booster. That made things worse.
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Has anyone suffered extreme GI tract issues except me? I am through three of six rounds every three weeks. I am soooo constipated and am living on Senokot and Milk of Magnesia. My hemoglobin level also dropped and I needed a red cell booster. That made things worse.
Thanks!0 -
Has anyone suffered extreme GI tract issues except me? I am through three of six rounds every three weeks. I am soooo constipated and am living on Senokot and Milk of Magnesia. My hemoglobin level also dropped and I needed a red cell booster. That made things worse.
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Mooboojack,
Go back a page and you can read all about Shelbaroni's GI issues! I think we've all gone through the GI game. My is not constip. but the Big-D! My taste buds appeared yesterday so my husband thought it would be a good idea to take advantage of that fact and go to our fav. gourmet restaurant. It was delicious and I ate like a pig. BIG mistake! I almost didn't make it home. I was the bride of the (in Shel's words) Great Porcelain God last night! Almost both ends!(Sorry) Just a warning. When you decide you would enjoy eating again, take it SLOW!!!
Donalee
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Imodium is my "new little friend!"
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Hello. It is so nice to find a place where people are going through what I am going through.
I had my last chemo treatments 6/6 and will continue with herceptin for 6 more months. I had 6 taxotere, carboplatin, herceptin treatments on 3 week cycle. I took decadran (pre, IV, and post treatment), emend, and kytril. I took neulasta shot to up the blood counts 2nd day of cycle. On the 4th day after I stop those meds I am wiped out and feel alot of pain in my shoulder, neck, and chest which I think is related to the mastectomy site and expander. I get flush and rashes on upper body. Also had fluid retention and take water pill every other day to help although i think I am carrying 10lbs of water weight. I am usually out of it from day 4-6 and then gradually start to regain strength and energy before the next cycle. Also have dealt with the intestinal issues and found that a stool softener from day 2 of cycle helps for constipation. I am so happy to be through this phase and hope that the herceptin alone is ok.
Jamie0 -
Hi Jamie! You were on the exact same treatment meds that I was. Kytril was the one I couldn't remember. I'll bet like me that that pain you get on the 4th day is the Neulasta and not your surgery site. I don't know if you read about my experience but I had a severe (understatement!) reaction to the Neulasta and ended up back in the hospital in unbearable pain. While it may work in terms of keeping white counts up, that stuff is NASTY if you ask me! I'm retaining fluid too so I feel for you. My doc said she'd give me water pills if I need them but she'd rather not if she can help it because she wants me to stay well hydrated. I told her if I can't fit into my pants next week she's buying me new ones.
)Anyway, what I wanted to ask you all is if anybody has trouble with depression going through this? I struggle with it anyway, even when I'm not being treated for cancer but I have been soooooo low the last few days. Crying, feeling like I'll never make it through these treatments. Feeling tired and crappy all the time is hard and it really sucks me down. Anybody have any good advice that will pull me back out of this chasm?
Shel - how are you feeling? Any better? I've been worried about you!!
Aly.
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Hey Jamie...welcome to the place we all wish we weren't, but we're all in this together. Yeah, I had quite a rollercoaster ride with decadron...though I'm no expert, just being on my first cycle. I had some flushing, water retention...and then after I stopped, I did have some discomfort around the mastectomy site and expander. Don't know if it's related. But I had euphoria, which made all the other stuff bearable. Until I crashed. I have subsequently learned that the stuff that was making me so high also immobilized my bowel, along with the stuff I was taking for nausea. So I think I'm going to follow your lead next time and "get a jump on it" by taking stool softener as soon as I start the steroid!
So here's the latest installment of the Shelbaroni daytime drama "As the Stomach Turns". After switching to the OTC Bonine (Ahoy matey, no more seasickness for me! Arggh!), I was able to toss down all my dietary supplements, including concentrated fish oil, and a protein shake this morning. And they're staying put. After "exploding" once yesterday, I actually produced what most authorities in the field would call a "normal stool" this morning. So all my titrating of meds seems to be paying off. Today I am dressed, took the kids to school, and am going to hang out with my oldest son who's in from New York. I almost feel normal.
A couple questions for those who "know"...Did anybody ever get actual blisters on their lips? It also seems like the skin on my face is ultrasensitive. And I haven't really been in the sun since I've had my treatment. Is this weird? Also, I'm just starting to get the achy thing down in my pelvis, in my sacrum. Isn't that a little late? Is that the Neulasta or the Taxotere, I wonder? (Nan, you might know this one.)
Well all, thanks for your prayers and good wishes. May everyone have the best day possible.0 -
Oh, and Aly: I didn't answer you because I think we were typing simulaneously. I do decidedly feel better. I just took some Aleve for my sacral pain, but I'm not going to let it keep me down today. As for depression, I'm someone who tends to get that way from time to time even without the assistance of chemo. The last couple days, when I would just lie there and moan, my husband just made sure that people were coming in and out of the house all day. There was always something funny on the big screen, and there was seemingly an endless succession of young people coming by to rub my fuzzy head and tell me they loved me. That kept me from wanting to end it all. And today I'm better. I just wish there was a way that all of us could be in a big place together and help each other pull through. I guess, with the internet, we just have to use our imaginations more...Also with depression, sleep is huge. Use melatonin (my clinical nutritionist has me using up to 20 mg a night!...has anti-tumor effects on its own!) or get a prescription for sleep meds. I use both. And as much physical activity as you can bear. Take a walk,if it's all you can do. Put on your sunscreen and get out in the sunshine. Vitamin D helps, just overall, and sunlight will help your moods. You're going to be stronger and healthier after all this is done than you ever were. You lean on me and I'll lean on you, and we'll get there. I'm going to kick this in the butt, and I'm taking you with me.
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Hi Ali and Shelbaroni,
Great to hear from you! I too go through periods of depression...it helps to have people around to talk to and to have rub my bald head too but sometimes I just have to sit on my pitty pot for a while. Getting through the milestones are helping...now through the chemo and heading toward getting my implant. The reconstruction has been a real downer for me so I am hoping that getting the expander out and a smaller implant will help with the feel and appearance. I did have mouth problems... especially after the first treatment. I had sores which I used Rincinol (over the counter) and magic mouthwash (script) for and a yeast infection that I needed perscription losenges for. The rincinol helped alot with the sores...also used blistex for the lips.
Take care.
Jamie0 -
Shel, you made me smile. Thank you for that. Yeah, I know sleep is a big deal and it's been a problem for me. My husband and I aren't getting to bed before 11PM and we're both exhausted. Our 2.11 year old is a night owl and won't sleep before 10. I told him this morning that something has to change because being so tired is dragging me down. I have sleep meds but am afraid to take them. How silly is that? Being here on my own all day (except for little Molly) it's easy to slip into a funk and wonder how I'll ever get through this. My onc was careful to tell me on Monday that this would be a hard week because I would be losing my hair so I'm feeling sad about that, especially when I see extra strands coming out in the morning when I brush it. I'm afraid the great follicular fallout will be happening any moment and I'm not thinking I'm going to be all that cute bald!!
)My mom went through breast cancer when I was 8 years old. She had a radical mastectomy. They took lymph nodes, muscles, the whole bit. Because of that she never had to go through radiation or chemotherapy. She never lost her hair. At this point, I envy her. I honestly do.
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Hi ladies,
I had my last tch back on 2/13 and can tell you that time does heal all wounds. I was prompted to jump in about the sleeplessness. I used tylenol pm. The fast acting gel ones are a little more expensive, but in half an hour I was falling asleep and getting 6hrs. They didnt give me that groggy, hangover feeling either. Try just one at first, and if it doesnt work take the 2nd. The tylenol helps with all the herceptin aches and the neulasta hurts too.
I have 10 rads left then just my herceptin until november. I take biotin to help my hair recover and am now going out without a wig or cap. I would equate it to a "susan powter" look from the 90's, if any of you can remember when she was doing her thing on tv, "stop the insanity". The biotin also helps with my nails that taxotere trashed so bad. They are finally growing out healthy.
Tch is so much better than the ac w/t cocktail, much kinder to our heart. My onc says that being her2 is slowly becoming the type of bc they are able to say they can treat the best because of herceptin and he believes that in a few years they will say it will be the one they can "cure" because of the advances in drug therapies. So if I must have the dx, at least I have a beast I feel I can beat.
Take care all,
Cheryl
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On a completely unrelated note, any of you ever look at your medical insurance statements? We just got ours today. The bill for ONE chemotherapy treatment? $12,000. Yes, that's twelve THOUSAND dollars. I'm stunned.
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Aly...Does your daughter still nap? If so, can you nap with her? Or have "quiet time", like we often do when we're pregnant and exhausted and have preschoolers at home? Maybe the two of you should watch "Monsters Inc." I totally have a crush on Mike Wazowski, especially when he puts in that giant contact lens and asks Sully for some "odorant" before his date with Celia. I think by the time I lose my hair, I'm going to look a lot like him, except with two eyes. I know. I'm sillier than a monkey let loose in a costume loft, but a woman's gotta do what a woman's gotta do. You've mentioned the hair issue a lot. Do you have a wig? Do you maybe have a friend who could help pick one out with you? That might make it a little easier--like when I was pregnant with my first and felt gross about 4 months because I was a weight control counselor and I felt out of control myself, and my friend took me shopping for CUTE maternity clothes, and I couldn't wait to wear them. I ordered myself some caps and a do-rag that I don't get to wear until I don't have any hair. Makes it just a little bit easier, in a weird way, but a little easier. I'm sorry if my ideas are lame, but this is the kind of game I have to play with myself all the time. There are also, I think, some books out there about how to talk to younger kids about the whole process to kind of bring her into it so she's on the same page, but not freaked out. My prayers are with you, girl. As for me, I have the bone-achy blues, but doing well.
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Have I mentioned the hair issue a lot? Wow, I must really have it on my mind, I didn't realize I had spoken about it before. I must already have chemo brain, I can't remember anything.
)I have a bunch of bandanas and baseball caps to wear when the inevitable happens. I'm not going to do the wig thing, everybody I've heard from says they are hot and scratchy and not only do I run warm to begin with, but we're heading into summer so I think I'll pass on that one.
Molly isn't old enough to understand any kind of explanation about cancer or what's going on with my treatments (she's not even 3 yet). I can tell her things like "Momma's sick" or "Momma's tired" and she understands that, and she understands going to the doctor and that the doctor helps you feel better, but anything more complex than that she's too young for, which I guess is good in a way because she's too young to worry about me. I think that when my hair does start to fall I'll make sure she is there to see me get it cut off. My hairdresser will come to my house and I'll try and make it seem fun, like look how cool Momma's head is now. She's such a smart little kid she'll probably just roll with it and want to wear her pink baseball cap when I'm wearing mine. I'm probably way more worried about it than I need to be.
I'm glad you're feeling better today, that's good news. I've been a little under the weather the last few days but doing better today as well. Got the laundry done on my own today so that's real progress right there!
)Aly.
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Aly- I had to laugh because I have a new Golden Retriever puppy that I named Molly and in treatment 3 and 4 I was not getting much sleep like you. Up at night(we got her a 5 weeks). The kids were in school and I did not want them to get up with her. I needed the puppy because I needed to keep my mind busy. We had just lost our 1 year old Golden to a drowing accident. I believe my Miss Molly Mae really helped keep my mind off of being sick, etc.
I looked at my bills from the hospital for the chemo---$45,692!!!Each treatment!!!! I find it crazy how one hospital can charge such a different rate for the same treatment. All I can say is--Thank goodness for insurance!!!!
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Hi gals, hope you don't mind if I butt in. I genenally hang out in the "March chemo group" Not sure if I ever posted in this conversation before. I am doing TCH as well and like Aly I get deathly sick. I've tried every anti-nausea medicine and the only one that helps a little is Zofran.
I have about 7 days I'm worthless. Usually day 5 through day 10 or 11. Never actually talked to the doctor about weekly doses, I worry that I might be mildly sick the whole time and I don't want to give up those 2 weeks of feeling good. With the last 2 treatments (#3 and #4) I've had 3 IV's, but something really strange happened on the last IV. I got it last Wednesday one week after my tx. For some reason the doc told the nurse to give me a shot of Decadron as well. I went from being extremely dizzy with horrible nausea to being 80% better by the evening and completely fine the next day. He is now telling me to take a Decadron every single day while I'm sick. The pharmacist said it would be okay. I know it will cause me not to sleep well, but I'm thinking of trying it.
I get the neulasta shot after every treatment and have had absolutely no side effects from the shot whatsoever. I also have not had any constipation with any of the anti-nausea drugs I've tried, I have to deal with diarrhea instead.
I've made some good friends in the March group, but not one of them is on TCH so it's nice to know there's so many of us. God bless gals, Mary
If you do switch to the weekly doses, I'd be very curious to see what kind of a difference it makes.
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Mary6204,
Hi! I just had my first TCH on June 2. I have had to deal with lots of the big D also! They gave me decadron right away. I have had no nausea at all. It's too bad you had to go through that. Thank God the they wised up and finally gave that to you!
Donalee
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Hi All,
I have been reading everyone posts in preparation for starting TCH soon. However I had the appointment with my new oncologist in Boston yesterday and she is suggesting that I do ACTH. That's the standard at the Dana Farber, it seems. They say it is more effective and more tolerable. I am a bit unhappy about the change as it will be 4 sessions of AC every other week followed by 12 sessions of TH every week. I had resigned myself to the TCH 6 tx regime, and now I will have 16 tx and adding two weeks on to the whole ordeal.
I'll go check out the June chemo board to see if anyone else is doing ACTH. Good luck to everyone on this board.
--Jo
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I went back a little farther and seen Lisann's post. I am so sorry you lost a puppy to something so sad. I lost my 13 yrs. old shih tzu to heart failure 1-1/2 years ago. Thank God I got another shih tzu puppy last March. He has helped me so much to get through all this. When I'm in bed sick he jumps up, gives me kisses, lays and watches me for a few minutes, then runs off to see what he's missed. He means everything to me. It's nice to see that you were able to get another puppy and move on with your life. For the last 2 years of Nicky's life I was constantly on a message board for pet loss. It helped a lot, but it really surprised me as to how many people absolutely wouldn't get another pet after losing one. I really feel getting one isnt a replacement, but it helps with getting past it. Sorry to ramble on, but pets are very important in my life.
Good luck Jo with your decision, I wish I could give you info to help. And to Donalee, maybe we can share a box of Immodium!! Mary
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I think every cancer facility should have canine therapy. I live in an apartment and can't have a dog now. I had a dog several years ago and I know she was a huge comfort to me for all sorts of things. It took several years for me to no longer feel devastated by her death.
I just talked to my oncologist and she told me that they would give me TCH instead of AC/TH if I wanted. She said that in their experience, TCH knocks people out; AC/TH is better tolerated. She said they were pretty much equally effective.
What is everyone's experience? Overall, how are you doing on TCH? The idea of 6 tx every 3 weeks is more appealing to me than 16x every other and then every week. But I don't just want to base my decision on convenience. I have to decide in the next two days as my chemo starts Monday (my oncologist is away and I'd have to wait another couple weeks to start if I don't start this coming Monday).
--Jo
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Jo, I have 4 out of 6 down and I haven't found very many people who get sick like I do. I was told at the beginning that if I had problems with morning and motion sickness, it might not matter what "recipe" I was on, I would probably be sick and they were right. I was sick for 5 months with my son and 8 months with my daughter, very unusual. So don't base your decision on me.
I am fine treatment week (tx on Wed), I drive myself to my appt. I do fine the next 2 to 3 days, then I'm sick for 6 to 8 days. I bounce back totally and for the 3rd week I really enjoy it. I go to the gym 4 times, babysit my grandkids, run around like crazy getting things done and then start all over again. Most woman I've talked to do pretty well with TCH and only 6 treatments is a good thing for me. I also have no pain, not even from the neulasta shot, no numbness and definitely no accumulative tireness as a lot do. My treatment is next Wed and I feel fabulous. If it wasn't for this darn wig, I wouldn't feel any different. Good Luck Mary
Good luck with your decision and if you do it, hopefully you won't have the nausea.
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Well my comrades, I had my first treatment a week ago right now, and I don't feel bad at all. I'm about to go take a long walk and stretch my legs, after dealing with the Neulasta "achey-breakies" (Nan...might be another song in the works) yesterday. Then it's off to a couple art museums. Then tonight, I'm having a bunch of people over for homemade pizza. Sheesh--48 hours ago, I couldn't even SAY pizza without ralphing.(Please believe me...I don't want to come off hateful and boastful when reporting my exploits--but this is the type of stuff I loved reading from people BEFORE I started treatment...when I was at Jo's stage--so I could hold onto the knowledge that I wouldn't feel at my worst for 3 months!) So I have a question: Does anyone else actually have huge blisters on their lips and areas on your face that feel burnt? I don't know what to use to wash or moisturize my face anymore that doesn't irritate. Should I treat myself like a ruddy burn patient or what? Nan, you might know this one. It's a weird comparison, but it's like I have facial hemorrhoids! LOL (People have called me a butt head from time to time, but this is ridiculous).
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Butthead, (sorry couldn't resist) I had sores on the inside of my lips after the first treatment. Someone suggested bag balm. I bought it from CVS and even though I didn't see how it would help, but it did. Within 24 hours they were gone. I haven't had the problem since. I do get really red in the face the day after TX, but otherwise nothing. Mary
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Aly: Those insurance bills are outrageous, aren't they? My chemo billed at around $16,000 each treatment. After insurance applied their agreed-to costs, the bill was more like $7,000. Herceptin-only is billing at $6500, $2500 paid. Makes you think about that lifetime maximum clause on your health insurance. I reached my out of pocket max for the year the first week of January -- my last chemo treatment.
Terri.
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Joia: Good luck with your decision. On the one hand, it's hard to make this kind of decision, on the other it's good that they are giving you a choice. I also had a choice. My first appt. with the oncologist, she gave me the run down of the "standard" AC/TH. She also briefly mentioned there was an alternative treatment, but didn't go into it. For my second appointment, she discussed TCH in more detail. After she finished, I definitely thought TCH was the way to go. She was of the opinion that TCH is equally effective as well.
I thought about 6 x 3 = 18 weeks vs. 4 x 2 + 4 x 2 = 16 weeks. Did I want to go an extra 2 weeks? Turns out it's not the length of time that you go through treatments, it's the big countdown that matters! I was so glad to be "done" at 6 instead of looking forward to two more. I think the side effects are more manageable with a three week cycle than a two week cycle. You always manage to bounce back before your next treatment. I hated my onc mid-cycle but by the time I saw her again, she was OK.
The main factor that went into my decision -- potential heart problems of doing A followed by H. I was 44 at diagnosis and didn't want to have an impaired quality of life for the second half.
I also considered the fact that I wouldn't have to have immune system booster shots (Neulasta) with TCH. And lastly, the all important Herceptin for us HER2+ people starts at the first treatment. You don't have to wait 8 weeks for the benefit of that.
Again, good luck with your decision.
Terri.
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Terri,
Those are all good points. I am definitely leaning towards TCH, but I want to talk to my oncologist again. She said that they have more experience managing the side effects of AC/TH and felt it would be more tolerable. But, I don't want to go against her recommendation and not have her full support (in which case I would need to think about changing doctors -- more of a headache than I want to deal with as I just changed cities to go to this facilty).My onclogist is recommending AC/TH as 4 x 2 + 12 x 1 = 20, which seems like an awfully long time.
Jo
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Geesh...I've gone from being Empress to Butthead. My husband thinks I look like Pee Wee Herman and calls me Pee Wee all the time. I'm gaining an average of one new nickname a day!
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