Taxotere, Carboplatin and Herceptin
Comments
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- Hi Teena - Welcome! I think most of your questions are addressed on older posts, but I think there are no "for certain" side effects (or anything else for that matter) when it comes to chemo. We all react differently. I strongly support what many have said about being prepared and doing anything preventative that you can - especially keeping the bowels working well. Most of us have lost our hair, or had it thin out to the point that it looked bad enough to cut/shave it and invest in head coverings and wigs. It seems like that will be a lot worse than it actiually turned out to be for most of us. Best advice I can give is what everyone else says:
- Look for early symptoms of side effects and hit them hard before they get worse (especially bowels and mouth sores, etc.).
Review the "pre-chemo kit" list suggestions and have those suppplies on hand when you start chemo.
Take one day at a time and expect the best but prepare for the worst. Don't panic when you read about all the side effects - no one gets them all and most of us get through just fine.
Call the contact numbers given to you by your oncology team whenever you have a question - just because something is a known side effect does not mean you have to suffer with it - there are many remedies available that can reduce the side effects and your team is there to help you.
Use this board as a real "sounding board" - ask any questions and share problems and solutions. This is a great support for us all and a place where we can share good times and bad.
Remember that so many women have gone through this -all ages, all physical shapes, sizes, all levels of health and pre-existing conditions, all professions, lifestyles, financial status, and life situations, women who have good support, women who seem to have none, single moms with little kids, widows marching alone, grandmothers who were looking forward to an enjoyable retirement, etc. We have this one battle to share and we each bring all our personal reserves to help us. But we do it! We face the uncertainty, the waiting, the fear, the side effects, etc. and we make it through - most of us so much stronger and with a new found appreciation of what's important because of the experience.
Good luck with your chemo and stay with us!
Gina
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Hey girls.
When I started this thread,,,,,,,the intent was to help each other thru our journey, accept and acknowledge ideas and thoughts from those who have traveled this journey and welcome new ladies. I found that not to be the case,,,,,,,as there was a lady who came here and no one acknowledged her...........she has since found another thread that has become her home, which I am glad she found. I apologized to her in a private message and told her that my intent was to welcome everybody. I know there are lots of new ladies on here since the old group from last year,,,,,,,,and it gets hard to keep up with everyone,,,,,,,but I also feel that everyone is important. I too have felt for sometime now that my input was ignored.......and maybe its just time for me to move on. My hope was to give encouragement from someone who has gone thru that,,,,,,,,been there done that,,,,,,,,,and let you all know that you will make it too.
But I do want to wish each and everyone of you good luck during and after treatment,,,,,,,,,,,keep remembering the light at the end of the tunnel,,,,,,,,,,,,,,it is there trust me.
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Cindy,
I really hate to see you leave our thread- I truly cherished your wisdom, advice and experience of having preceeded us in the journey. I know you didnt post often but it was always a treat to hear from you when you would drop in. I am not a real active posted either being busy with FT job and 5 children- I am sorry our group missed someone - usually people are great at reaching out. I know everyone has been crazy busy with treatments, se etc but it is sad to see we missed someone during all of that!
Bethany, I live in Lindale and work in Tyler. We got some wind and rain- no damage - I loved spending the whole day at home baking and playing.
Kristy
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Shelbaroni,
My docs sent me for post mast rads due to the fact that they consider me high risk- even though my tumor size was small- grade 3, HER2 highly positive, sentinel node negative but had a positive intramammary node and a really high Ki67 percentage. The rad onc did say the "usual" for getting post mast rads were:
Tumor larger than 5 cm and 4 positive nodes
There were some studies published this summer (I think) about post mast rads that also had these basic guidelines. I had really mixed feelings and would have preferred not to have the rads- but I was surprised(truthfully because they disagreed on the axillary dissection surgery) that my oncologist, radiation onc and my original breast surgeon all agreed on the past mast rads----- so I decided to go ahead with that plan.
Kristy
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Cindy,
I find that it is sometimes difficult to keep track of people and have a group of specific "traveling buddies" through this journey by using these boards, as there are SOOO many threads, and many of us post to several (I actually have 5 listed as my favorites and now only check those). There are lots of repeat posts, and the thread title sometimes doesn't reflect the topics discussed. Originally, I thought it would be better start a new thread every month, such as "Starting TC September 2008" or "Radiation in September 2008" so that newbies could quickly find the place to join in and find a group of women roughly at the same place (then of course, when they have time, go into the "older" treads for tips, etc.)
I actually migrated from another message board site, where I couldn't find anyone having the same treatment at the same time. This one was full of companions and information. From what I've seen, most members are very welcoming to new members and include messages to them in their posts. Sometimes it is not immediate, as there seem to be lulls in postings at times.
At any rate, I don't think anyone actively "ignores" others, but more that they post what's on their minds at the time and it might take a bit of time to address all the questions and new posts. For me, this board has been a very good resource and I feel that I have made freinds along the way.
Gina
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I second that in spades.
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Wooah. The brunch is over, the kids are picked up, and all the young adults have left for the wedding rehearsal or the beach. And I need to put my feet up the wall, because my legs still look like inflatables (edema DESPITE daily Lasix).
Yeah, I so appreciate this thread, Cindy. Unlike some of the others, this has really been my only forum. So yeah, it's been great.
Kristy: Thanks for telling me what your doctor's guidelines for rads are. I didn't have any intramammary nodes positive or anything. So maybe that's why no rads. I'm not going to go begging for trouble or anything.
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Hi gals,
Haven't been "onboard" for awhile - just busy, no other real reason. I barely had interaction with you gals, but Cindy, I feel bad that you are leaving - reading your posts have been very helpful to me, and all of us here in this thread. Well, if you are definitely leaving, I wish you the best!!!! God bless!!! Wish you'd stay!!!!????
I had my 2nd of 6 TCH tx last Wednesday (10 days ago) and I am still having SE's. These tx do a number on my digestive system. Stomach cramps, constipation, heartburn, nausea. I do take meds for this, suppositories, stool softeners, prescription Pepcid - but I didn't think SE's would last this long. After my 1st tx, by day 6 I was good to go. This time it seems to be lingering and the nausea only started yesterday (did not have any nausea first time around). Is this normal, ya think??
I get the Herceptin drip once a week until next August (one year, like most of us). But, that has no effect on me, thank God!! Neulasta on the other hand, YUK!!! Rads should begin in early January.
I started losing my hair on day 16 after first tx - after a few days of clumps coming out, I went and had my head shaved
but as someone else has said here, the head is really sore when lying down - so I think I need to get it buzzed off totally. I bought 2 wigs before I even started losing my hair, and have been wearing one of them all along - so at least I'm used to that now and so is everyone else. This hair loss deal is a HUGE issue for me. But, as we all have to do, is to remember it will grow back and hopefully thicker (I had very thin hair). Anyone here have trouble sleeping???? I beg for a good night's sleep!!! My onc prescribed Ambien - it did nothing for me!!! She gave me a script for Lunesta the other day - my "wonderful" insurance will not cover it - so, she called in a script for Sonata yesterday - as luck would have it, the pharmacy did not have it in - I will be able to pick it up today though. I sure hope it works tonight. As I'm sure many of you know, sleepless nights is the PITS!!!! When I go to bed, I have no problem falling asleep, but within 3 hours I'm wide awake and cannot go back to sleep. Right now, it is about 6:20 AM and I am awake since 3 a.m. (went to sleep around midnight).
We're all more or less on the same road and have many things to share - and it sure helps to share with people that actually KNOW and UNDERSTAND all these feelings, emotions, etc. that we go through along this long, hard road - but as Cindy has said many time, there is light at the end of the tunnel!!!!
All of you ladies are in my prayers!!!!
Maggie
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It is good to hear from all of you. I am not really myself in my brain yet so I am going to just post a general post. Am I the only one who gets the brain fog? My eyesight is bad too but then I have bad eyesight normally. I was born with lazy eye so I really don't use that eye to see. the other one has said No to the glasses I got early in the year before all this started so I am back to the old ones. After a week I get back to seeing better. Today is the day after treatment that starts getting bad for me until Wed. and after the Herceptin and the extra fluids I feel better. I drink my liquids but I guess just getting it put right in the blood helps more. I lose weight during this time because everything tastes so bad. Then I gain it back by the next treatment. Fools the doc though!
Shelly, I used to take lasix all the time because my legs would swell. this has been years for me because of other conditions. My cardio said that the lasix was actually causing me to retain the water in my legs. I don't know how this works but he had me start wearing support stockings and I did not like it at first. I got them at a Medical supply place where they measure your legs so you get the right fit. They fit different though if you ask me from one kind to another but anyway they really have helped my legs. I have skinny ankles today! yeah! You could maybe just wear them when you are on your feet a lot or if they are really bothering you. I can imagine all you have to do right now, yikes! I also really have to watch my sodium. You are not as old as I am but I don't mind wearing them now because I know how much it helps my legs. I guess I do have a little varicose veins. I wore the pretty ones to work for years, the sheer support and they did help a little. You can get these in a sheer up to the knee and also heavier ones which I don't like but do wear to work because I am on my feet a lot. Hope your legs get better soon. I know how miserable they can be.
I just got a call from my sister and they had to rush my brother to the hospital. He has had cancer too and had problems for years with other things. I don't know how much more I can stand. My aunt just died and her funeral is today in Texas so I can't go and my brother lives down where Ike hit in Houston. Wonder what next?
Carolyn
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Hi all,
gosh, Maggie, I hope the Sonata works. I've been using Xanax and benadryl to get to sleep and stay asleep.
Carolyn, I am so sorry for the loss of your favorite aunt, about your brother --please let us know how he's doing. Blessed are those who mourn for they shall be comforted.
Shelby, what does the doctor say about why you are still retaining water? What a drag.
Cindy, even before I joined this board, I had read all of your posts from last year about your feeling about the prospect of losing your hair and how you were on a special weekly schedule to avoid hair loss. Sounded like you ended up dealing with the hair loss with grace. Thank you from the bottom of my heart for setting up this thread.
(()) Bethany
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Carolyn,
I apologize - I must have skipped over the thread where you said your aunt passed away. I'm sorry for your loss. And also sorry to hear that your brother is back in the hospital. When it rains, it pours, huh?
I will be sure to add an extra prayer for your aunt and your brother. Take it easy!
God bless
Maggie
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Cindy,
if you stop posting at this thread, I'd still like to keep in touch so pm your email. We've been through a lot together. I know how you feel though, I don't know any of the new ladies and I don't get much response to my postings anymore either. I'm always available to give advice though if people want it having been through it with you. Also, if anyone is looking for advice from a younger person's perspective, I'm here (I"m in my early 30's). HOpe all is well with you. I've been busy at work and trying to enjoy the last bit of good weather in chicago!
Leslie
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Hi everyone,
(Oh and I mean everyone!) I'm wiped out from this last treatment! Was in bed all day yesterday! Shel, you amaze me with the energy I can only imagine at this point! I want to come over and eat at your house!(Though it will taste like my mouth!!ugh!)
Anyone new, i think Tammy? Sorry if i messed up your name I'm still in a fog. Miralax is fabulous for constipation. Usually I'm constipated for the first week then it's on to the big D!! I take miralax (non-prescription) the day before and the entire week of chemo. It seems to make the pipes run smoother. Also are you on steroids like most of us? That is the great WILL NOT SLEEP medicine! BAH!
Goin back to the couch! Hope everyone tries to enjoy the day as much as possible!
Donalee
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I'm sorry! I meant Teena!!!!!
Not Tammy!!!!(chemo-brain!)
Donalee
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Hi everybody -
I haven't posted in awhile - I've been fighting a cold this week and have just been coming home and collapsing. Plus I broke two teeth - actually, one is a veneer - add that to the three crowns and one filling that I found out that I needed last week . . . ahhhh! Plus 21-yr-old dd was the meat in a 5-car sandwich on the freeway. She's OK, but they totaled her car, and she's searching for a new one and she's making me nuts. Practical? Reliable? Gas efficient? These things are not important if it's not CUTE, you know.
Anyway. . . Carolyn, I'm sorry about the loss of your aunt. I hope things go better for your family.
Donalee, hope you're feeling better. Some days I couldn't get out of bed after the last few treatments either, so I know what you're going through. Rest, rest, rest. . . like you can do anything else, huh?
Hope everybody has a good rest of the weekend!
Sue
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Hi, I am on TCH also. I was just wondering if anyone had sore feet bottoms...or I guess better said sore soles of their feet? Mine are just killing me!
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HensonChi- i had the foot problem you are talking about. it went away, but you need to make sure to tell your oncologist because it is from the taxotere and sometimes they like to adjust the dosing. I don't remember having to get a dose adjustment. What I really remember was my palms and soles of my feet would itch and burn for a day or two straight and it drove me almost bonkers. Hang in there, it gets better. I'm over a year out from chemo and thankfully no residual problems from it (knock on wood!)
Leslie
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Hi everyone,
I have waited to post so I could give a full report on my transfusion of red blood cells. My red cell count (?) was 9+ at the end of my third treatment. My oncologist decided I needed a transfusion. They gave me two bags right after my standard infusion (#4).
I had two results:
1) Because of the transfusion they did not give me saline solition I.V. after the infusion and I had the worst day 4-10 ever. I can not eve bear to describe how I felt.
2) After day 10, I felt the best I have since beginning chemo. I had much more energy and even my G.I. problems were much improved. Week #2 after chemo was like the former week #3.
Now I am wondering if I should have returned for a saline infusion the next day or on day three. I know they make a real difference. I also wonder if teh routine saline solution on day 1 might washout some of the chemo too early. Anyone have any thoughts on this issue? I notice that those that have saline infusions have them the next day.
Best wishes to you all. The list is so important to me.
Jo Anne
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Thanks IWY I thought I was going completely crazy and had some other wierd disease because of the strange pain it causes. I will definitely tell the onc. Thanks again!
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Carolyn,
Sorry to hear about your aunt and brother - sometimes it deifintielyseems like a never ending stream of negatives- so I will definitely keep you in my prayers.
Shelbaroni- what supplements are you taking? I didnt take any during chemo (at onc request) but have been researching a lot lately about supplements and nutrition trying to decide how to appraoch the after treatment time - its definitely confusing and overwhelming- so I thought I would ask around about what other people are trying. I have one friend currently fighting BC with ONLY a nutritional approach- vegan diet, lots of supplements etc - and I obviously didnt try that as my first line of treatment, I think it could be useful as I finishe treatment to rebuild my immune system etc.
Kristy
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Hello all! The hand/feet problems are driving me crazy too. It did start for me until after TX 5 and I thought I was going nuts. I have found that taking ativan helps.
I am having my final TX tomorrow (YEAHHHH!!!), number 6. Although I am dreading the usual side effects, I am so happy to be at the end. I don't have side effects from Herceptin, so I'm not dreading those remaining treatments and am glad to be switching from once a week treatments to every three weeks as I have to drive 200 miles round trip. My gas bill will surely go down.
jap, I can tell you that I take IV fluids on day 4 and day 7 after treatment and it helps me so much with side effects. Without it, I can't tell you how bad I feel.
Carolyn, sorry to hear about your aunt's passing. I have many friends in Houston (we lived there for 20 years) and I know how bad the aftermath of IKE has been. I hope your brother is fairing well.
Kay
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Kristy;
There are many oncologists who don't like their patients taking ANY supplements, with the reasoning that if it's good for your healthy cells, it'll feed the cancer too. What they're not taking into account is that cancer cells don't use nutrients the same way that normal cells do. A good book to read is Beating Cancer With Nutrition by Patrick Quillin, Ph.D. Personally, I have been working with a clinical nutritionist off and on for years. I'll tell you what I take, but this program was tailor-made for me, so I don't know if it would be appropriate for you. I take a vitamin/mineral supplement, additional folic acid and vitamin C, calcium, magnesium, vitamin D emulsion, concentrated fish oil, flax oil, black current oil (to get the right balance of Omega 3-6-9), proflavanol, Vitalzym (enzymes), coenzyme Q-10, and Oncoplex (concentrated broccoli extract capsules). I presented this list to my onco before treatment, and he told me I could take everything but the Coenzyme Q-10. Now that I'm on Herceptin only, he said I could take the Q-10 again--after all, it's good for your heart, right? Also, while on treatment, I took a powerful probiotic every morning. Helped keep the bowels under control. And I didn't get sick with anything infectious the entire time I was on chemo. Hope that answers your questions. But since doctors differ in their ideas about nutritional supplementation, definitely ask your oncologist!
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Hi everyone,
Thanks for the welcome and the great advice! I have bowel problems on a GOOD day, so the tips about Miralax are right on time. Medical people don't seem too concerned about keeping patients' bowels moving. My beloved son Shane passed away 2 months ago from brain tumors, and we were constantly pressuring the doctors and nurses to keep him on a prophylactic regimen to keep them moving, but they just wouldn't do it consistently. He was in such pain every time he had to "go."
What are the other medications the oncologist has prescribed for you? I know they will be giving me decadron, but she also mentioned "several" medications. I have my chemo teaching on the 29th, but I'd like to hear what everyone else is taking.
Has anyone tried Claritin to combat the bone pain effects of Neulasta? If so, does it work?
Bethany - love your name! That's my daughter's name, too.
Prayers and blessings for all,
Teena
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Teena - So sorry to hear about your son. That must be very difficult for your family. In terms of medications, they gave me an anti-nausea drug (Zofran) by IV the day of chemo, and then I continued to take it for 3 days in pill form after chemo. I took Decadron the day before chemo (2 pills twice a day), then continued at the same dose the day of chemo and the day after. They put benedryl in by IV after I had my first ereaction to Taxotere (2nd treatment). I took two extra strength tylenol 30 minutes before the injection of Neulasta (which I gave myself the day after chemo after treatments 2,3, and 4 - I did not have it after Tx1). All the rest of the medications I took were prescribed to deal with specific side effects I had.
Gina
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Thank you, Gina. Did you have any problems with the Neulasta?
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No, nothing too severe. I gave myself the injection in my abdomen - it didn't hurt at all. The two tylenol 30 minutes before the injection seemed to really help. For 5-6 days, I would occassionaly get some sternal pain - felt like my heart was racing and I needed to take a slow deep breath to calm it down. But those subsided by day 6-7. It never got so bad that I needed to take the pain medicaiton they gave me (codeine), just took the occassional tylenol.
Gina
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Hi Kristy, how's the radiation going? how are you feeling? Twenty-what days to go now? And, Gina how about you? any sunburn or pain?
Teena, My heart hurts for you. how very sad and huge this loss of Shane must be. I am so sorry that now you must also soldier through this while you grieve for all you have lost. How old is Bethany?
Just walked in the door from TX #5 -- one more to to go!!!!! Got a prescription for a diuretic today -- my ankles aren't swollen but my fingers are. Going to go in for the MUGA scan on 10/8 just to be sure my shortness of breath is just from the low RBC or chemo in general. Was told that the absolute BEST thing anyone can do to improve energy if you are fatigued is to walk at least 30 mins every morning (or whenever you can.)
Happy FALL everyone -- it's a new season and filled with hope. Peace, Bethany
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Hey Tina,
I do take claritin for my neulasta pain and it works for me. I take one the day of the shot
and one each day after for three days. My first shot I had alot of pain second time took
the claritin. No pain, didn't even need tylenol.
Laurie0 -
Hey Bethany,
Congratulations on another one done! Now just past the SEs and one more to go! I'm in abreak between the chemo and radiation - the radiation starts on October 7th, though I'm scheduled for a "mock" treatment on Oct. 3rd. Don't know what that is, except that it is not the simulation (with tattoos) as I already had that.
Gina
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HI Ladies,
for the constipation, i definately recommend miralax. it works and it is safe to take on a daily or twice daily basis without any concern for systemic absorption.
but when the miralax didn't work, I swear that dried apricots work like crazy. be careful not to eat too much because it works, within hours. i know it sounds crazy but I promise you it works.
Leslie
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