Taxotere, Carboplatin and Herceptin
Comments
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Shel: Take your nausea medicine!! Trust me on this one. Take it right when you start to need it, don't wait until it's so bad that you start throwing up. If you start throwing up you'll get dehydrated and it'll make things worse. They won't necessarily make you constipated, they haven't done that to me. The steroids are more likely to constipate. They will help, they really will. Nausea has been the least of my burdens because of the medication. I hope you feel better soon! I'll be thinking of you!!
Aly.
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Shel: Take your nausea medicine!! Trust me on this one. Take it right when you start to need it, don't wait until it's so bad that you start throwing up. If you start throwing up you'll get dehydrated and it'll make things worse. They won't necessarily make you constipated, they haven't done that to me. The steroids are more likely to constipate. They will help, they really will. Nausea has been the least of my burdens because of the medication. Oh, and my tongue felt like someone had taken a blowtorch to it as well but that is easing off now (day 7). I hope you feel better soon! I'll be thinking of you!!
Aly.
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I have to say that my fourth infusion last week was the best of all so far. I have adjusted my meds and I think that is what helped.
On my 2nd infusion I had a reaction when the Carbo was being infused. The nurse told me that the bag was too small and concentrated. I got a rash on my arm and still have it six weeks later. My oncologist is a newbie(probably late 20's!) and I had informed her what the nurse said. When the 3rd infusion came along there still was no adjustment to the bags, but I had no problems.
This fourth infusion was administered by the main oncologist because my regular doctor was teaching a class on that day. The bags of taxotere and carbo were doubled (not the quantity of drug, just the bag size). She said that this infusion would be comparable to having a mixed drink, rather than a shot! I was sick ONE DAY as opposed to 4! I also cut down on my steroids by 50% but still took my anti-naseau! My husband was amazed at the difference of my bouncing back so quickly!
I have heard so many feeling worse as the treatments go on but I actually feel better. Of course it is summer here in Chicagoland and I am getting out more after our long winter.(I did take a twenty mile bike ride the day before infusion too!) So I am going to do everything I did on the 4th for the 5th and 6th and then be done and look back and say "I DID IT"!
What is this Neulasta shot everyone is talking about?
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Shel: Take your anti-nausea meds. If you are concerned about constipation, also take Sennoket-S (can find in any pharmacy, OTC). It's a laxative with stool softeners. The nurse practitioner also recommended Miralax, now available OTC as well. I know it feels like you are taking far too many meds, but you'll get over it because they help you manage the side effects. How can you do a half marathon if you are prone to the porcelein god?
LisaAnn: Congratulations on cruising through #4. That one hit me hard so I'm glad you are actually finding them easier to get through. Neulasta is a medicine in shot form that is used to boost the white blood counts during chemo. My onc did not make me get one, so don't worry that you aren't getting one. The people I met in the infusion room who did get it hated it. I had a CBC tested mid-cycle once. My counts were low but I didn't ask for the shot. I never got sick during chemo.
Terri.
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Shel: Don't take that demotion yet! You are no longer Shelbaroni - I am going to call you Empress, because that is a FANTABULOUS word to describe you. I love it!
I know that Billy Preston song - and that is a great nausea song. As soon as you said that the women meet on-line, I totally "got the vision" of a stage looking in on all these women in their living rooms, bedroom or whatever - clicking away on laptops. We might be onto something! If someone wrote the V-Monologues why can't we write Breast Cancer: The Musical?
(Yes I am a nurse and I know the real name of that play but I just can't bring myself to type the V-word! I already talked about touching myself - I don't want to get banned!)
Aly: I am so glad that you went in and I love the way you phrased your question to the onc - Office or ER? It's your choice! - brilliant! We do some amazing things when we are driven by pain, fear and nausea!
I hear ya about not wanting to be a rare case - I heard that a few times myself! Makes you feel like a guinea pig and all you want to say is - MAKE ME BETTER! Keeping the pain and nausea at bay is the trick and I think that you will be raring to go.
God has to have His Hands on you - I have not let Him hear the end of it for the last three days! I can be pretty persistent!
((GENTLE HUGS))
Cinrae - Glad you checked in! Oldtimers like us have a lot of wisdom to bring to the table and I figure that if I can't share it and help others through this - then I have no idea why I went through it. Does that make sense? I seemed to have used the word "through" an awful lot....
Terri/LisaAnn: I didn't get Neulasta and after reading about Aly - I am glad that I didn't need it! They checked my blood weekly in between the first and second treatment, then every three weeks after that. I travel - so I have two oncs and two clinics (lucky me!) and in Maine the NP wanted to keep monitoring my bloodwork every 3 weeks through the Herceptin, but in Omaha - they aren't as concerned. In fact, in Omaha, I only see the doc every 6 weeks, versus every 3 in Maine. I think that some places consider Herceptin chemo - which I know it is - but it certainly doesn't need the monitoring that real chemo needs. I know they want to give us the best care - but sometimes the medical community stuffs us into a one-size-fits-all and that just isn't the case.
Anyway - I rambled - but I didn't want to leave anyone out!
Enjoy the weekend, Girls!
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LisaAnn: Your post was really interesting to me. I wonder if something like this (having the infusion less concentrated) would help me not be so sick next time. I would like to ask my doc about it. Do you happen to know what the size was of the bags that they hung for your infusion or even what the concentration ratio was? Ok if you don't, I just thought I'd ask.
Nan: Thanks so much for talking to God for me!! I think it has really helped. The difference between me at 3AM yesterday and me this morning is nothing short of a miracle. I have NO pain right now. None. The only thing I'm still suffering with is the lower abdominal cramps. My hubby and I are going to take another load of antiques for restoration and darn it, I'm gonna have a hamburger today!!
) I feel just about like myself again. It's wonderful. 0 -
Hey! I posted a post between Nan's and Aly's, but it didn't get posted, so I'll post again. I am so incredibly stoked, Aly, that you're feeling better! Thank You, God! I'm so grateful you took the bull by the horns and told your doctor that you WERE going to be treated, one way or the other. It's mind-boggling how much individual variation there is in how people respond to this stuff, and even the different ways it's administered from practice to practice. My prayers will stay with your continued strength. You have all of us pulling for you. Remember that.
Nan--thanks for the new handle. I'm still flying high...wonder how long the decadron takes to leave the system? I was up until 1 last night writing and realized I'd better get some sleep so I took a bunch of melatonin and an Ambien. I told my husband I was going to read. So I read three pages of my book and decided to rest my eyes. He found me at 3 curled up in my reading chair in a fetal position. I don't remember how I got to bed. Anyway, I was mixed up on the song. It's not Billy Preston...he did "Will it Go Round in Circles?" I meant "Spinning Wheel" by Blood Sweat & Tears--same era. Maybe we could add a parody of Johnny Cash's "Ring of Fire" to describe the Pizza tongue--which by the way is quite timely, considering that it's Pentecost...the "tongues of fire" and all that. But mine is in my mouth instead of on my head.
Aly and Terri--I have kept the nausea meds at my elbow but not taken them yet. Turns out, like Mordecai of old, I never did bow the knee to the Porcelain Haman. After having a little midnight summit conference with my GI tract, reminding it which direction things are actually supposed to flow, it all settled down. I think I just went too long last night without putting anything in my stomach, which is something I'll have to watch as the days go by, since I'm the type who gets busy and literally forgets to eat sometimes:) But I love that you're concerned about me. Keep reminding me when I get a little too heroic.
And Cindy: I don't know if I've told you this, but your "presence" in this thread...starting it and being a watchful mother (no better way to describe it) over it, has been a tremendous blessing to me. Going into this thing, I was the biggest worry wart whiney weenie in the world. But the more I read and talk to you all, the more empowered I feel. I send you huge cyber hugs and kissses!0 -
Aly: They changed my Taxotere from 250cc D5W(the dose did not change, that is 150 mg) to 500 and Carboplatin from 100 cc NS(dose 870 mg.) to 200. I strongly believe this helped!
Lisa
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Shel,,,,,,,,,,,you are very welcome. Not that I am an expert on all this stuff.........but if I can be of any encouragement to you gals,,,,,,,it has been my pleasure. We sistahs have to stick together you know? Its funny,,,,,,,,cause,,,,,,,as much as my family and friends were so supportive and loving and encouraging,,,,,,,,,it has been so helpful to come here and meet with others going thru the same thing. Others who are going thru this journey such as ours,,,,,,,,have more of a reality check on what it is like. So I have been extremely greatful to the ladies that I have shared my experience with.
And Miralax? Its the wonder powder for constipation. lol I went to a gastro MD a couple of months ago,,,,,had an EGD and the dreaded colonoscopy,,,,,,,,,,I have always had a problem in the poo poo area (sorry,,,,,no better way to describe that, lol ) and he told me to take Miralax. It used to be by prescription only but now its over the counter. It is safe enough to take every single day for forever. It has worked wonders for me. If you have a Costco in your area,,,,,,you can buy a twin pack of the bottles for like $24,,,,,,,,if you buy it from like CVS or grocery store,,,,,its like $22 for one bottle. My doctor gave me a presc for it and I sent it in to my mail order pharmacy,,,,the dr. said that sometimes insurance will pay for it,,,,,but my insurance didnt. Which is all good,,,,,,,,,its worth the out of pocket money to use it.
And its ok to be a whiney worry wart........omg trust me,,,,,,,I did a lot of that. This is the time for you all that are going thru chemo to baby yourselves. Friends and family will totally understand......they will,,,,,,and if they dont? Well just punch them in the nose. jk People understand. And if they dont understand,,,,,,,thats what having this board is all about. Because we all understand first hand what its like. Be kind to yourselves. When you are all done,,,,,,,,,,,you will look back on this journey and pat yourselves on the back and sayyyyyyyy,,,,,,,,,,,yesssssssssss I DID ITTTTTTTTT. WHOO HOOO.
Aly,,,,,,,,,,,good for you on feeling better. Thats awesome.
Nan,,,,,,,,you are quite an inspiration too. Are you still doing herceptin? Refresh my memory,,,,,,,I am having a senior moment. lol
Have a great weekend girlies,,,,,,,,,,
Cindy
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Shel: I think you need to find another song for the burnt tongue syndrome. When I heard you mention "Ring of Fire" I immediately thought of my ongoing battle with hemmorhoids during chemo. So the song needs to be in the muscial -- just associated with a different body part -- tee hee.
Nan: My onc is monitoring me less as well. Two Herceptins ago they didn't draw blood. I also didn't see my onc or the NP that visit. Needless to say I got done quickly :-) This past Herceptin my onc said she wouldn't see me for nine weeks. She did ask if I was OK with that and I was. I have to wean myself off of the doctor's visits and start getting ready to be off Herceptin altogether. My onc did order a full round of blood tests so that should get me through the next nine weeks.
Terri.
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AlyMarie - The june chemo group is also a good one and there are other people that just started chemo this month. You seem to have had some really bad reactions to the drugs. I hope you get better and it is not so bad next time.
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Shel, you're so awesome! You get so excited for me it makes me excited for myself!
) I think it was good for the doctor to actually see how much pain I was in. I think it's hard for them to make a good judgment call over the phone when all they can do is listen to you tell them "hey, I really hurt" but they can't see the pain in your face or how you can't even sit comfortably on a chair. Next time something like that happens, I won't spend 2 days calling them, I'll just go in. Lesson learned.LisaAnn, thanks for the info. I'm going to take it to my next Dr. appointment and see how your dosages compare to what I'm getting. Anything that might help is great in my book!
Texasmom, thanks, I'll be sure to check it out!
Hope everybody is feeling OK today. I still feel a little strange, like I'm not quite on this planet. Not sure what that's about but at least the pain is gone. Whoo-hoo for that!!
Aly.
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Thanks Aly. I might been needing your encouragement now. I think I did either a very silly thing or a very brave thing this morning, maybe a little of both. I was feeling pretty well last night after speaking at a high school graduation and through the reception and after-party. So I told my husband I wanted to participate in this low-tide bike ride event we've done together several times. We hadn't registered, because I didn't know how I would feel. So we got up at 6 and got ready. I felt great going in, except I've had the mouth and lip thing and this weird achiness in the glands under my ears, like I'm getting the flu-sorta thing. Well ladies, the first 2 miles of that 8.5 mile ride were rough. First, it's riding on wet sand (well-packed but wet), and then my heart starts pounding like the Benny Goodman Orchestra playing "Sing, Sing, Sing". My husband was there, and encouraged me with a really gentle pace, and I slow-deep breathed through it. I finished it in 53 min. 30 sec., but I am admittedly at diminished capacity. Arrrrrrrrrrgh. I think I'm going to take it easy a little bit today. My oldest son is coming into town tomorrow. Although everything I eat stays down, it doesn't go anywhere. I think I'm either going for the Drano or have our friend the plumber come over with his snake. I would welcome a fairly virulent case of uncontrollable diarrhea right now. But in the meantime, I'm still laughing.
Hey Nan...if the bike ride was in the show, we could sing "Bald-Headed Girls" instead of Queen's "Fat-Bottomed Girls".
And Terri...You're right about the ring of fire. I'll work on something better for the mouth. Yes, it feels as if every part of me that's lined with a mucus membrane has been marinated in picante sauce.
You guys want to hear something weird? Explain this one. So after the bike race, I noticed that I didn't sweat that much...it was pretty cold. But the armpits of my singlet smelled like CURRY. I had some curry powder in a salad yesterday, but I've never carried it through my body like that. CREEPY.0 -
Shel, I know that you don't want to give in to Old Mr. Chemo but you really do have to be extra gentle on yourself right now. I found out for myself that if you push yourself too hard you will make it much worse. Please get some rest, drink a lot and baby yourself until you're feeling better!!!
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To Aly and all those who have encouraged me to take my nausea meds: I finally started last night. I had no choice. It's amazing on this stuff how fast you turn around. Like 24 hours ago, I had just finished a bike race. Now I'm sitting here, sinuses pounding, trying to trick myself into drinking a glass of water. (I have my supplements in front of me and they WILL GO DOWN AND STAY DOWN if it takes all day). This sinus thing is really weird, cuz it's the same main symptom I have when I have a migraine and when I have the flu. Sinus medicines don't touch it. Maybe it's vasodilation. I'm going to try some coffee once I feel a little steadier. So yeah... after the bike race, I stayed in my chair or in bed. I've slept a lot, but now I'm doing the "pushing back against it" my chemo nurse suggested...just trying to do a little more than my body wants to. I got some Miralax and am waiting for it to work. I picture my bowels as turning into the La Brea tar pits--I probably have a fossilized styrachasaurus down there by now. I'll keep you posted.
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Hello Everyone,
I am new to this discussion. I have been reading it and have gotten some really great information.
I had my port put in this morning and start treatment tomorrow. The doctor is giving over two days. I guess there are two drug that can cause allergic reactions and she doesn't want to give them together the first time.
My treatment is herception weekly for 6 weeks and then every three weeks for a year, taxotere and carboplatin every 3 weeks for 18 weeks. I have been anxious to get started, but am very nervous right now.
I am curious about one thing - when your nails turn black from herception what do you do? Do they loosen as well? I'm a little freaked out by that. Any help.
Also, can someone explain why we have to take steriods? Do you have to take them every time you take the drugs? Is it for herception or the other two drugs?
I'd appreciate any feedback you could give me.
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Welcome, Casey: Although I am really sorry that you have to be here, I am so glad that you found us. I think that you will find this place is a lifeline - and we are forever grateful for our "Mother Hen" Cindy for giving us a place to belong.
I think that your onc is thinking that Herceptin and Taxotere given together might increase the chance for allergic reactions. Taxotere is classified as a taxane,which has a plant-derived base. I am sure that anyone can be allergic to anything, but I think that the plant nature of Taxotere makes it a little more likely than other chemo agents to cause a reaction.
Herceptin, although lumped into the chemo category, is actually targeted therapy, and does not have a lot of the awful chemo side effects (mainly, nausea and hair loss). It is an anti-body - and while it is a powerful tool in targeting breast cancer, it can also cause an allergic reaction.
For this reason, we get Benadryl in our pre-Chemo cocktail. We also get Tylenol, which combats any fevers we might develop from possible allergic reactions. Typically, we also get Kytril (a very effective anti-nausea med) and Decadron - the steroid that helps anti-nausea meds work. I took 10 mg of Decadron the night before my treatment, 20 mg with my pre-Chemo cocktail and another 10 mg the night of my treatment.
Some places stop pre-treatment cocktails once you complete the Taxotere-Carboplatin, others will keep you on the Benadryl and Tylenol until you finish Herceptin.
I had not heard that Herceptin can cause your nails to turn and fall off - but I know that nail changes like that are common on Taxotere. My nails are brittle and have some fine lines in them, but it is hard to say if that was chemo, Herceptin or the fact that they have always been a little on the weak side.
Talk with your onc and see if she is okay with you taking Biotin. It is Vit B and it helps with nail and hair growth. It doesn't interfere with chemo and although it can't prevent you from losing anything, it might help. I have also heard that some women rubbed Tea Tree Oil on their fingers and toes. I think that it acts as an antiseptic because I know that some people with funky feet issues (not chemo realted) swear by it.
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Shel: I hope you are starting to feel better. I had my treatments on a Monday and felt the worst on Thursday, Friday and Saturday. Herceptin can cause flu-like symptoms. I had shaking chills after my first two treatments. That eventually went away and I no longer have side effects with Herceptin. I know what you mean about trying to get another glass of water down. I wish I had discovered Crystal Light lemonade earlier on. That turned out to be an easy way to get water down.
Kay: Welcome. I think you will find this site valuable -- I'm glad you found it!
Even with the same kind of chemo the drugs that are given with the chemo will vary from place to place. Nan told you what she got with her treatment. My experience was different. In the infusion room, I first had blood drawn for a CBC. While that was being tested, I had a saline drip. Once the CBC results were back and I was cleared for treatment, I got a drip of Decadron and Aloxi. The Decadron was to lessen the chance of allergic reactions from Taxotere or Carboplatin. The Aloxi is an anti-nausesa med. The goal is to keep nausea at bay for two days. I then got Taxotere, followed by Carboplatin, followed by Herceptin. My first time with Herceptin they ran the drip for an hour instead of the usual 30 minutes, since it was a larger dose. I didn't have any reactions. At no time was I given Benedryl. My onc said that it wasn't necessary to give Herceptin every week. The approach she followed was a large dose for the first treatment then the normal dose every three weeks.
Now that I am only getting Herceptin, I get Herceptin (without any pre-treatment meds) in a 30 minute drip, once every three weeks.
Taxotere can cause nail changes. I used tea tree oil on my nails, along with Udderly Smooth. My big toenails got ridges early on. The fingernails (just a few each hand) didn't get funky until treatment #5. I never had any nails turn black or fall off. I stopped the tea tree oil after treatment and my nails did get brittle as the funky parts grew out. My nails have always been strong so it was definitely chemo-related. Five months out from treatment things are back to normal.
Good luck with your first treatment tomorrow.
Terri.
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Hi TCH club:
Kay - sorry you have to be here, but glad you found us. This is a great place for info and support, and an amazing group of women! My chemo schedule is the same as Terri's, and when I'm done, I'll have Herceptin every 3 weeks. And my fingernails are still fine (I
have had 3 treatments so far.) Best wishes tomorow - I'll be doing #4 at the same time.
Shel: OOh, the LaBrea tarpits is a very apt metaphor. But then, about 5 days after my first treatment, suddenly the volcano errupted...oh my. Then last time (#3), I had the opposite reaction - Mt. Vesuvius from day 1. Be prepared for rapidly changing gastric conditions!
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Ahhhh, Crystal Light. Liquid of the Gods. When water tastes like tin, it's the best thing in the world for getting fluids down!
Like Terri I also got the Decadron and Aloxi (and one more anti nausea med I can't remember). I got my meds in a slightly different order - Herceptin, then Carboplatin and the Taxotere last. I imagine every infusion room will do it slightly differently.
Shel, I hope that you are doing better today. I feel for you, I really and truly do. Having just gone through it myself last week I know exactly how you feel. Just do the best you can and if you can manage something to eat and drink it will help keep your strength up. I know it's really hard. I'm praying for you!!
Ok, so today my Oncologist recommended that I switch over to weekly treatments instead of every three weeks. She said she can't see "taking me and my family down" for a week out of every 3, given how the last treatment affected me. She thinks weekly treatments will be easier for me to tolerate and she says that when they treat weekly, it doesn't usually cause your white count to drop so they oftentimes don't need to use the Neulasta at all, which would spare me the intolerable pain. We're going to try it and see what happens but I'm wondering if anybody else out there did weekly treatments instead of the 3 week cycle, and how that worked for them? Anybody switch from the 3 week cycle to the weekly cycle for the same reason? Did it help?
Aly.
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Hi everyone,
I popped in here over a week ago when I was waiting for the path report on my second re-excision. It was successful and my surgeon got clean margins.
Since then I have temporarily moved back to Boston. I'll go back to DC at the end of chemo and radiation and continue with the Herceptin. So many changes in the past 6 weeks: diagnosis, 2 biopsies, 3 surgeries, root canal surgery, and now moving!
Anyway, Nan, I am sorry, I don't seem to have answered your question from back then. I will be seeing Dr. Partridge, an oncologist at the Dana Farber. My first appointment is this coming Wed. And then the fun begins.
I've been reading this thread and the Tips for Chemo thread and am grateful to everyone who posts here.
----Jo
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Kay and Jo,,,,,,,,welcome. This BC site is so helpful. Its nice to share and compare notes with others.
Aly,,,,,,,,,when I first started chemo,,,,,I did the every week thing. The reason for that was,,,,,,I was soooooooo depressed about losing my hair, that there was a lady in the office doing the every week thing and she was almost done and hadnt lost any hair. So I thought,,,,,,,I will give it a try. But to no avail,,,,,,,I started losing my hair anyways, so switched over to every 3 weeks. For me the side effects were the same as for every 3 weeks. I felt crappy almost the whole week,,,,,,,,so figured no sense in doing that. At least doing it every 3 weeks, I would have one good week before the next treatment. Everyone is different though,,,,so maybe for you every week would be good. Good luck to ya.
Kay,,,,,,,,,,I didnt lose any of my nails. I do the silk wraps,,,,,,,and the onc said it was ok for me to continue. And the miralax,,,,,,,,,,it really works wonders. Its totally safe and they even use it on babies. My dr. said I could take it forever,,,,,its that safe.
Nan,,,,,,,,you are a wealth of information girl. We love it.
Shel,,,,,,,hang in there girl. I think everyone takes the decadron, right? For me,,,,,,,I took it the night before, the day of and the day after. I would have my chemo on a Monday and I would be hyped up till Thurs. I would get the Neulasta on Tues,,,,,,then by Friday all hell would break lose. lol
I personally never found anything that tasted right when I had the metal mouth. The only thing that tasted halfway decent was like a milk shake.
To all the others,,,,,,,,,,,,keep on truckin girls. This will all be over soon and you will be so proud of yourselves. Atta girls...........lol
Have a great week all.
Cindy
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AlyMarie: I read somewhere on this thread (probably an August post) that the order they give you the chemo drugs may impact your side effects. The person posting recommended doing Taxotere before Carboplatin. She said the one time she got Carbo first, she had really bad reactions. So you may want to see if they nurses will make that change for you. I always made sure I had Taxotere first. Once I was given Herceptin first because the other bags weren't ready but the second drip was Taxotere with Carbo last.
And do you have to have a Neulasta shot? I never had one -- my white counts were low but I never got sick.
I talked to the lab nurse today about my blood test results. Chem panel, tumor markers and cholesterol test all came back fine. She said the onc signed off on my CBC even though those counts were low. It can take from 6 - 12 months for your immune system to rebuild itself after chemo (I'm five months out). The RBC and HCT values weren't low enough to justify a shot. She said the shot (not sure if it's Neulasta or Neupogen) costs $3700!
Terri.
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Ok, now I don't know what to do. I'm confused. I'm worried about just being sick the whole time instead of having 2 good weeks out of 3 but my onc. didn't think that would be the case. ARRRRGGGHH!! I wish I had a crystal ball to tell me what the right decision is!
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Aly. I wish I had a crystal ball, too; because if I have to have a repeat of today for the next three months (like the low string vamp in the movie "Jaws"...DA da DA da DA da, at nauseam at infinitim), I would just go see Dr. Kevorkian first thing tomorrow morning. So much for being strong. God, was I ever delusional! So many of the remedies for the side effects involve keeping things in your stomach, which is a joke. The little white pills they gave me that taste like dehydrated cotton candy don't work. I have performed heroic acts that belong on "Dirty Jobs" with Mike Rowe to try to get my bowels to move. Miralax has not worked. I can't even take it tonight. It wouldn't stay down. And my face just throbs, in the sinuses. Has anyone had actual migraines following chemo? I really think that's what this is. And of course anything that would make it go away would thin my blood or make me hurl. There ARE however, some gurgling sounds emanating from somewhere in my small bowel. So perhaps my entire GI tract has not dissolved into some primordial ooze of necrotic goo as I have feared. And just smelling the tacos that my husband cooked the kids for dinner made me want to call Beulah on the Great White Phone. Then my 16 year old comes in and wants to watch the Food Network on the bigscreen. Nothing like staring at a greasy porkchop that's larger than myself to settle my tummy. Earlier, coconut sorbet stayed down, but it stopped working after awhile. I guess the thing is to keep from getting dehydrated. But how long am I going to feel this bad? Sorry for all my moaning and groaning. Thanks to all of you for your words of encouragement. I'm wondering if there's something they can tweak in my regimen to keep me from feeling so hellacious next time. Like I think I had to do more steroids than most of you, which is why I was so high. Like I had to take 2 of them twice a day for three straight days: the day before treatment, the day of, and the day after. Maybe that's a bit much.
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Shel, one thing you do need to do is call your doctor first thing in the morning and tell him/her that the nausea meds they gave you aren't working and that they need to give you something else. There are other meds they can try until they find what works for you. They probably just gave you the basic stuff they give everybody to start with and if that's not working for you you need something else right away. If you can't keep pills down then you need "the old up the bum" version (sorry!) until you can keep the pills down. I know I'm only on my first treatment as well but one thing I do know is that you don't have to just sit and suffer with the nausea and particularly if you are throwing up and can't keep anything down. That's a big no-no because you will get weak and dehydrated in a heartbeat. Promise me you will call in the morning? It's not about being weak, it's just about getting the right meds!
Big hugs!
Aly.
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Shel,
I had a headache for the entire week after my first treatment. My husband reminded me (since I don't have a memory anymore!) that I'm usually borderline enemic. When I get my periods I have to take iron pills and that's the only thing that makes the headaches go away. So at the end of the week I started taking two iron supplements a day and the headaches are finally gone.
You may not want to try this until the bowels are your friends again though!
Not to make you jealous or anything but I'm having the opposite problem. Every time I eat anything it feels the need to esape immediately from below!!!
Hang in there!
Donalee
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Shel,
I also had too many steroids! Same dose as you and couldn't sleep at all. I'm going to ask them to cut down the dosage next time! I was a nervous shaky wreck!
Donalee
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Shel: Your constipation can be coming from the anti-nausea meds (what are you on?) and the steroids. Apparently, steroids hype everything up but the bowels!
You really need to call your onc and let them know what is going on - since home remedies are not working, you might need to go in for...as Aly put it... something "up there" and more importantly, a little IV hydration as you are not taking in and keeping fluids down. As for future treatments, maybe they can alter your steroid dose and that will be enough to not have constipation.Can you tell that I am a nurse? I don't mean to be Miss Bossypants - I just can't help but go into nurse mode!
Terri: Congrats on your bloodwork. I thought it was interesting that you didn't get Benadryl - maybe they thought the steroids gave enough allergy protection. Do you remember what your steroid dose was? It is interesting how different treatments can be. I had all my pre-meds in pill form - which was fine by me! The less time I spent in that infusion chair - the better!
Donalee: Talk to your onc about taking melatonin to help you sleep during the steroid highs. It is a supplement and doesn't leave you with that "hangover feeling" you get with Tylenol PM and other sleep aids.
Aly: Good to see you are feeling better. I didn't have weekly treatments, but maybe there are other people here who have experienced that and can tell you what it was like. Maybe the less concentrated dose is a better fit for you.
Joia: Originally, I went to Dr. Morganstern at Dana Farber - but it was at the Faulkner Breast Center campus. That is where my surgeon is and she is amazing. Since my treatment was in Maine - I have not really seen Morganstern again - I guess my Maine oncs will take care of me now - I am just grateful that I was given the chance to have TCH and not AC - I don't think I would have had that opprtunity if I let Maine set my treatment. Good luck and keep us posted!
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Donalee welcome. Its so nice to hear others input. Very helpful.
Nan,,,,,,,,,its good to have a nurse here. My hubby is a nurse also,,,,,,so he was a great help to me thats for sure.
Shel,,,,,,,,,,please call your dr. Maybe they need to switch you to another med for nausea.
Aly,,,,,,,,ask your dr about the every week schedule. It just may work for you. It really didnt work for me,,,,,but everyone is very different. You could try the every week this next treatment and if its not better you can always switch back to the every 3 week treatment.
Yeah,,,,,,,the steroids definately keep one hyped up. I took ambien for sleep,,,,,,,,,,and it worked for me.
I got really sick about midway thru my treatments,,,,,,I had diarrhea, vomiting and passed out,,,,,,but I think that was because I was dehydrated. So as much as drinking something is hard,,,,,,,,,just try to keep fluids down. Very important.
Have a good day all,,,,,,,,,,,,,,take care of yourselves.
Cindy
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