Taxotere, Carboplatin and Herceptin
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Lady_Madonna - I hear you (about the leg pain). Nothing seems to help it for me, and stairs are definitely the worst. I've been achy all over since the first Tx, so the Onc gave me Oxycontin to help with that. I haven't had to take very much of it, and since they began running Benydryl on the 3rd round (my neck tends to turn beet red from the taxotere) alot of the achiness has been alleviated. You are only days away from your last Tx!! That's exciting. My last Tx will be July 5th and am soooo looking forward to it!
Seems I've developed a mild LE and have just been fitted for a compression sleeve, so we'll see how that goes.
To all of us having to deal with this terrible disease - Father Bless. (hope that doesn't offend anyone)
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Thank you so much Lady_Madonna or can I call you Melanie? Congratulations on Monday being your last treatment. Way to Go!!
Thanks so much for the advise - It is well taken. I know everyone is different and side effects will effect everyone differently I'm sure. I'm prepared to lose my hair (I think) hehe . Don't think I can shave it though. I bought some scarfs for when I'm getting ready for work and it comes out in clumps, I'll have scarfs for that. So going by what I''ve read, I have about a week and 1/2 before it does. right? Did you stop have periods while on Chemo? I was told that it might stop mine, in fact I was told that it may kick my right into menopause. I just turned 50 in Feb and i still have mine so unsure of how it effects others. I have a very supportive family - 3 grown children. 2 of which are married daughters and a very wonderful husband. It is true what they say, it not only effect the person with the cancer- it also effect my whole family. I'll admit I'm alittle scared of what i have ahead of me. Afraid of being too tired to get out of bed to get myself to work, afraid of what I'll look like with no hair - just afraid of the unknown in general. So I feel great today, but maybe not so much tomorrow huh? Any other side effects I should be aware of? Tomorrow will be my day 3 from TCH #1 - I pray I feel good - it's fathers day and we have a big Pool party planned.
Thanks for listening and I'll check back.
I really enjoy this site and reading all the information from you beautiful ladies.
You can call me Kelly if you'd like.
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Hello, I am new to this site also. I have been reading some of postings and I think they are helpful and calming some of my fears and concerns. I just started my first chemo TCH last Tuesday. Been feeling tired these last few days and wonder if it's going to get worse.
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I am so happy for those who have emend for nausea. I did not have that but other stuff. Chemo kicked me down hard and I am still trying to recover after 2 years. I did take the benadryl every TX even Herceptin.
The one thing I have to say is drink the water!!!! Lots of it and keep children out of the bathroom that you use. You need to flush the toxic poison out of your system as soon as possible, if not it can damage your kidneys. I have a friend that had chemo at veterans hospital and they did not tell him this and he has kidney damage. This is one thing he wants everyone to know. He did not have breast cancer but it is still the same. My hair came out in clumps after the second chemo so I just went to the barber and had a burr because my head got so sore from the hair that was left. besides it looked really bad with big bald spots. this helped my hats and scarfs fit better and if you are going to wear a wig you will want it short. I don't really think shaving it is good but then that is me. You may get sores on your head from that. Another thing for any newbie is the mouth. Start with salt,soda and water mouth wash. keep you mouth really clean. You may have to ask for something else. I thought I was prepared after all I went to chemo school and it did help a lot but I was one sick puppy but I am back at work and I have hair but not thick like it used to be. You will get better.
Carolyn
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Hello out there -- want to cheer everyone on and say how brave you all are.
I'm one year out from the end of Herceptin -- going in for check-ups every six months now -
just had a bit of a scare --- there was something different on the mammogram.....so long-story-short, I had an excisional biopsy on the other side and the tissue tested was normal.....a very scary ordeal: "false positives" -- glad to be checked out so carefully though.
All is well and you will be well too. As difficult as this is to you now, this is all worth it.
For me, it turns out the difference on the mammogram was probably scar tissue -- because evidently there was some sort of injury (maybe my doggie) to my other breast. It's hard to think that some things are still just that silly and simple when you've had all of this to go through but things are going to be ok -- you'll see. Best wishes and cheers to all, Bethany
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Bethany, it is good to hear from you again. I am really glad it was not cancer again and You look great!
Carolyn
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Hi ladies, haven't checked in a while, trying to get on with life! I am heading off for my last Herceptin treatment today! Lots of mixed emotions with this all ending! I think I have heard that this is pretty typical to be having all these mixed feelings. I love the thought of not getting stuck with a needle anymore! Yeah!! I will get deported in two weeks and then just on to the regular doctor checkups that we all continue on with. What a year! Hope your all doing well and welcome to the new one's here and one day soon you all will be posting your end of treatment also!
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Blessed - CONGRATULATIONS on your last Herceptin. I had mine in April and the port removed in May. Port removal is QUICK and EASY and feels FABULOUS to have it gone. It did its job, but it's lovely to say goodbye to it. I am feeling so much better with all that behind me. I think I just see the onc quarterly now for the first year. Next visit is next Monday. I know he will fuss about my weight but I am WORKING ON IT, I swear.
Good for you to have completed this chapter. Now onto the future!
Kelly-the unknown is the scariest part. My peer/mentor told me that once you have your first chemo and then lose your hair, pretty much the worst has happened and you start to gain confidence that you can really do it. And that is what happened with me. I didn't wait for all my hair to fall out - I cut it very short and then buzzed it around day 18 after the first chemo. i was bald in the summer - it wasn't so bad. I wouldn't like it in the winter though. A bald head is COLD. My husband shaves his head - not sure how he does it without being cold while sleeping. But you are from CA - so it is warm there all the time, right? or not? I'm on the other side of the country. But we are sisters all the same!
Amy
Amy
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I was wondering, for those who have completed treatment, how long were you off work for? The reason I ask is - I am on Long Term Disability and will be getting my 6th tx in a week and a half, then probably rads, then hopefully a BLM, gallbladder sx, while continuing on herceptin until March. I guess I'd rather concentrate on myself rather than trying to juggle work with all of that - kwim? Not sure if my Dr will keep me off or not, so I thought I'd ask others here how long they were off work for. Thanks in advance for sharing.
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Welcome, Kelly, and while I'm sorry you had to join our club, it's clear you have a lot of energy and a positive attitude, and that will serve you very well. To answer a few of your questions:
-- I was diagnosed the end of October at the age of 51. I was on the pill and still getting periods sometimes but was definitely beginning the menopause journey. Haven't had a period since then, though, and wonder if I ever will again. You will be thrown into "chemopause."
-- I finished chemo four weeks ago and am now getting Herceptin and the study drug Avastin every three weeks (first H/A solo dose was last Wed.).
-- I was worried about the black nails and losing nails, but that never happened. They got a little weaker, but they've never been very strong, and I'm surprised they held up so well.
-- I know you don't want to shave your head, but you might well change your mind. I did. I got a cute short haircut before I started chemo, and then when it started coming out in clumps it kind of freaked me out, plus it can make a big ol' mess in your bed and on your clothes, so I had a hairdresser friend shave it. That was a traumatic experience but it was the best thing to do. I got used to it pretty fast, and it hasn't been nearly as bad as I thought.
-- I thought everyone lost every hair on their body, but I didn't. I lost a lot, but I kept my brows and lashes-- they're half what they used to be, but they were strong, so I'm okay. I got that brow powder stuff, and it's fabulous-- I beef up the brows most days. So even though you should be prepared to lose it all, you might not.
-- Emend was a wonder drug. Never had a moment's nausea. I did have bad intestinal issues, though, and if they kick in for you, go immediately on a very bland, low-fiber, easily digestible, high-protein diet until you're done with chemo. It helped a lot, although it was still hard. Scrambled eggs, protein shakes, chicken, chicken soup, white bread, bananas, white rice....
-- Chemo is NOT FUN... but it does go by fast. I was able to keep working (and I have my own demanding small business) and keep exercising (less so at the end-- it is cumulative). And now all of a sudden it's done. My taste buds and digestive function returned just in time for a post-chemo vacation with my husband and some old friends in San Francisco and Napa, and I had such a great time. I walked 4 miles in Napa this morning, and it was great!
Hang in there. Drink tons of water. You'll be able to work, but rest when you can and exercise when you're up for it. You'll get used to the port. Come here with questions whenever you need to. Soon you will get your life back.
Colleen
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Hi all! I had my first TCH treatment 5 days ago and have been doing pretty well. Not so much nausea as heartburn and just an upset stomach with not much appetite. Wondering when the "bad taste" issue kicks in for most? A couple things tasted a little odd today, but it was more like my tongue feels scalded. Have had a fatigued feeling making me just want to be on the couch doing nothing...and I usally always am doing something...but I guess I expected that.
On the "chemopause"...how soon does that happen? I'm 38 and nowhere near menopause by natural means! I was thinking as I was calculating what day my period would start that it would sure be a bummer to get that on top of the chemo effects.
I started reading this thread at the beginning and am so thankful for everyone here...so much information is invaluable. I've only made it to page 31 (of the now 248!!) but I will read every post.
Thanks for your help!
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crazy bc, I was 38 at diagnosis with a 6 month old baby that I was breastfeeding at the time. Of course as soon as I got the diagnosis, I quit breastfeeding and my period returned (ironically) the night before my very first chemo! I never got another period during chemo, and even after 4 months PFC it still hadn't returned. Then I got a hysterectomy/oopherectomy, so I'm now (unfortunately) in permanent menopause at age 39.
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IsThisForReal, I've gotta ask, because I just had this discussion with my doctor today, why would you have rads and then a BLM? There's no reason to go through radiation if you're going to have a BLM so don't put yourself through that!! I just had chemo #6 today and I'm meeting with the genenticist tomorrow so we can find out ASAP if I have the BRCA mutation(s) because if so my onc and breast surgeon both recommend BLM and the radiation I would've been starting in a few weeks will be out the door!! I don't mind having a hysterectomy/oopherectomy but I'd really like to keep my breasts so I'm praying I don't end up BRCA+!!
CrazyBC, I started chemo at 38 also and never had another period. Those meds are meant to put all the estrogen in your body to a screaching halt so I wouldn't worry about it!
There's ONE thing to look forward to!I'm officially done with TCH as of today!!! My nurses brought me pink and white balloons and a cute little sparkly pink tiara to celebrate. Oh happy day! Just have to get through the next couple weeks of side effects and the fear of the BRCA testing and I'm down to radiation (probably) and herceptin only! I'll keep you posted on the hair re-growth!! YIPPEE!!!!!
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ISTHIS FOR REAL, I was off for 7 months. I think I am the one who had to be off where most can work some days but I really was so weak I could not do my job. I was also so sick even with meds that it would not be fair to my work partner because they would have to do all the work. My onc also told me to take leave because of my blood counts and I could not be around the public much. I work with the public! Like I said I was the exception not the rule. I am still having problems with blood count and I have to keep my port indefinitely. I have not heard of anyone else having this problem. I had 9 units of blood during chemo and radiation and then they put me on Procrit and it keeps my count up enough to manage to work. I did have 2 teen grandsons that lived with me and I was able to keep their clothes washed and food for them and my husband. I had to have help a few times in the morning from hubby to get the breakfast on after a treatment but most of the time I made it and then rested after everyone went to work. My day was do a little and rest but whatever you can do definitely do so your muscles won't completely go away. Water.Water all the time. it is a must. I hope you do as well as a lot of women do.
As for those asking about menopause I don't know since I had a hys/opt at age 29 and I have arthritis and fibromyalgia so this may be why I had a rough time. I wish everyone the best. I do think this site was a big help for me. I found out things no one told me at the chemo lab or the onc. he thinks he is protecting me but I would rather know something can happen and it not than to have it happen and be completely surprised. So many women have come through this site that have gotten better and now moving on to a new normal. I applaud CRAZYBC for reading all this site. I know there is a lot there. I think it can help though even if you just do a search and find some answers to the questions. The answers come from all over the BC site not just here.
Amy & blessed by 4, I am so happy for both of you to be finished. It is a little emotional but you get used to it fast not having to go so often but the radiation was the hardest on me I think. Partly because my brother died then and I had to take a long trip to go to his Memorial. I got real weak during that too.
Carolyn
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welcome to the newbies and congrats to those that have finished treatments!!
For me, I worked thru all of chemo with having 1 week off after the 5th and 6th treatments. It was not fun but doable. I had hair to the middle of my back, I cut it 1 week after chemo started and it started to fall out in handfuls (I filled a walmart bag with hair) at day 19 and day 21 i had my head shaved. It was extremely traumatic but i got over it pretty quick. I finished chemo April 7th and now have about 1/2 inch hair and got it colored last friday so that was exciting!
I have not had a good month. I had my mastectomy may 10th, my father in law passed away may 19th of a sudden heart attack, I had back surgery may 27th and then got a staph infection on June 6th and was in the hospital for 4 days. I started radiation on June 16. Man what a month.
I was diagnosed when I was 37 with a 6 week old baby. I had one period a week after my 1st chemo and nothing since. I also took prevacid daily has my heartburn during chemo was horrible. I also normally could only eat eggs, chicken noodle soup for a few days after chemo because of the horrible taste. I could not drink pop either..the fizz hurt my mouth.
This is a great group here. I try and keep up but sometimes it is hard.
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Thanks for the answers! Congrats,Melanie, on finishing TCH...I got tears in my eyes picturing your little party! How sweet of them to do that for you! It must feel fantastic to have this part behind you.
Allison, I'm so sorry you had such a terrible month. Maybe now things will only get better. Was the back surgery a surprise? I, too, have hair to the middle of my back, very thick and very curly. Am undecided as to what I will do when that day comes. I don't want to shave it as nurses have told me that maybe I won't lose it all...it might just thin. And since I have enough now for 2 people that might be enough in a ponytail under a hat. And my 5-year-old is very attached to my hair! But, the doctor and most of you here say that it will be complete..or at least 90% loss...so we'll see. I have hats and a wig piece to wear under the hat. My hair has been a challenge my whole life, so I'm thinking I may be OK with not having to deal with it for a while...and I may be in denial! I have heartburn as well. Not taking anything yet, but if it gets any worse I will have to...my throat has a smoldering fire in it.
Anyone know what makes the decision to have a oophorectomy? I thought I read that that was a rare necessity, but now I'm wondering.
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CrazyBC - I think most get the ooph if you are BRAC+. I do not have to do that as i am negative..thank goodness!
My back surgery was planned. I had 3 herniated disc and needed to have it done now or would have to wait until after rads and I couldnt stand the pain anymore. The staph infection was just a bump in the road!
I did have a hard time swallowing for about 3-4 days after each treatment. that is why i ate mostly eggs and chicken noodle soup..anything easy to get down. breads were almost impossible!
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crazybc,
I had the hyster/ooph because of my mom's history of uterine cancer AND because of a suspicious cyst that was found on my ovary (turned out benign but had everyone worried, including my ob-gyn) You are right in thinking that it is NOT the norm. Usually there would be other reasons. After chemo you can decide whether to do tamox (for premenopausal women because it just blocks the estrogen being produced) or an AI (for postmenopausal women, or if you are premenopausal they can shut down your ovaries with lupron shots so you are in a sense postmenopausal). If you're getting curious about what to do, start searching around on these boards--there are tons of threads discussing all the options!
LadyMadonna, YAY! So glad you're on the road to recovery now!
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Melanie~ How many treatments did you do?? I soooo dont want to lose my eyebrows, lashes and nails. I didnt last time mine are really thick so they just looked normal after chemo. My hair is still here, but i have only had 1 tx...i have #2 on friday. Last time i dont think my hair would of all fallen out, just thinned but i buzzed it off anyway cause it made my head hurt.
I read about fasting before chemo to avoid SE, so i am trying that this time. I will be fasting 48 hours...24 before tx and 24 after. I am drinking tons of water and will try to drink more those days too
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Nine - I had never read about fasting during chemo but the idea greatly concerns me. I found that the cycles when I didn't eat were definitely the ones I felt the worst. I got weak, my stomach hurt even worse and it really was bad. I did do all the drinking water and that defintely helped. But the fasting idea worries me. What is it supposed to do? It seems to me you really need to keep your strength up.
Amy
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Thanks for all the well wishes! Everyone else hang in there, we're all in this together!! The day after my last chemo and I'm still feeling great, other than a slight sore throat (which I always get.) I had a total of 6 TCH treatments, and will have herceptin only,every three weeks, for the rest of the year.
My lashes and brows thinned but with mascara and some brow pencil I look pretty normal! Very little problems with my nails, I just kept them trimmed shorter as they were a little weak. There is no way I could have made it without wigs- my head hair loss was too much and even when it was stubly I would notice the stubble coming out in the tub after each cycle.
I'm leary about the idea of fasting to avoid side-effects also...I know it helps me tremendously to each small meals almost constantly. Please be careful and scrap this plan the minute you start to feel weak or nauseaous!
My next phase is supposed to be radiation, but my onc sent me for BRCA testing today and if the results are positive she recommends a bilateral mastectomy instead. This really threw me for a loop and I'm praying I'm BRCA negative! Sometimes it feels like you're on one big emotional roller-coaster that never stops for a day of peace! I should have results in 7 to 10 days. I guess that will help determine whether to have a hysterectomy/oopherectomy as well. In the meantime I'm just trying to get through the last cycle of TCH se's as comfortably as possible!
Thanks so much for all the fantastic advice and friendship!! This is one fantastic group of ladies! I'm sticking around this board- I'll let you know the BRCA results and what my onc recommends for the next steps. Everyone stay strong and positive!
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CrazyBC- I am also 38 and had a period after my first and second treatments, but nothing after my third and fourth treatments. My oncologist sees no reason why it won't come back after treatment and since I am ER-/PR- can even take birth control again. Although I have heard of a lot of women not having it return for about a year. The hot flashes I can do without!
I have not lost all of my hair on my head, I probably have about 10-15% of it left. I could not bring myself to shave it off, so I just cut it to about 1/2" on 4/26/10. Today it is about 1" long in most spots and even 1.5" in some. I also have tiny little hairs growing in where the bald spots are. They only grow in the 1 to 2 weeks before treatment, not the week directly after. I have not noticed any hair growing in around my hairline, mostly just on the top of my head. I have not lost any eyebrows, eyelashes or arm hair. I only shave my legs and armpits once every three weeks (which is just fine with me!) and that hair only comes in white anyway.
I feel bad for about 10 days after treatment and like a normal person for the other 11 before treatment. It is"doable" but not something that is enjoyable. All you can do is take one day at a time and remind yourself that you have all these wonderful women to talk to and remind you you are not alone!!!
Jennifer
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Morning ladies! I don't chime in much anymore, but I do try to keep up with all the posts.
I really need want to comment on the "fasting before and after tx". That is a really BAD idea. You need all the nutrients you can get while going thru chemo. Nine I am sure your onc would not like this idea at all. Please check.
Have a great day all!
Lisa
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I agree with Lisa. You need the food. what I did was either drink boost after treatment because of my problem with throwing up. I would eat Jello and soup anything that was not heavy or greasy. that made the diarrhea worst for me but a bland diet like toast, rice,applesauce is good. As for heartburn my onc gave me Pepcid prescription strength which is double the over the counter and Protonix. I still take Protonix when my stomach is acting up but not every day. I do have a sensitive stomach.
I hope everyone else is doing good. I do have a slight problem right now. I had a lump biopsied in April and they said it was a fatty necrosis (spelling?) anyway I now have puss coming out of the spot they cut open. I was hurting for a while but that thing has always been tender. they did a little incision and only one stitch. It was red and really sore yesterday so while I was showering I pulled the skin a little so I could look at the spot and puss blew out of it. I nearly fainted and so then I decided to look and see if it left a hole and the stuff blew out of it with so much force it hit my other arm. I nearly freaked then because it was not like a pimple it was worse than I have ever seen. I got out of the shower and got dressed and called the surgeon. the nurse told me to go to my primary care doc and I told her he would not like that since he has nothing to do with this. he did not do the surgery and he would just send me there. I told her I would just call my onc. She then decided to talk to the doc. they have called me in an antibiotic but green stuff is coming out this morning. I hope I did not wait too long to get the med. I am supposed to see the surgeon on the 30th. he is out of the office a lot this month it seems. I was supposed to have my mammogram on June 14th but we had a flood in the city so I decided it would not be good for me to drive down there. I rescheduled for July 8. I told my husband I was really dreading the Mamo because I was so sore and now I know why. I do not know if this fatty thing has turned to infection or I have had the infection since April. I did do the trial drug since then and it may have caused this. I just don't know but I did not sleep well at all this past week and now I figure it was because I had fever. Ladies just don't be like me, keep an eye open for things that feel or look different even if you have finished chemo & herceptin. I guess I have so busy I was not paying attention.
Carolyn
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Caroyln - I am so sorry you are going through this. i just want things to be ALL BETTER for you!
But I really think it is an infection caused by the incision, not the trial. I think the antibiotics will clear it up and you will be better again. However, I would not want the mammo until it is all cleared up. They squeeze us so much it is uncomfortable enough without an additional sore or tender area. I would probably postpone if it is not ALL better by then.
Feel better!
Amy
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Thanks Amy. Yes I do think it is infection but then I have taken antibiotics 2 times since the surgery. Once for the surgery to not get infected and then i took Cipro for urinary tract infection so you would think I would have not gotten infected. I do have a blood count problem though so could be because of that. I know May 10 I got my blood test and a shot of Procrit and that night I was sick and felt like I had a fever but I figured it was just because of the shot because it does make me feel a little achy. anyway I have been sick since but not terrible just not well. This place has been tender since radiation which was Jan.-March 2009 so the onc said it was a fatty necrosis and then I was going to do the study drug so they wanted me to have a biopsy. I was glad to because it had me worried then but nothing like it is now. I just got my med and took the first one. It is 3 times a day and hopefully I will feel better in a few days. I will go to my onc if I am not better because this surgeon does not seemed concerned and has to be out of town. At least my onc PA can look at it and see what might be going on. My heart has been skipping beats every since I had the fainting spell but I was not too worried about this because I have had this all my life off and on. I figured it was my autoimmune problem. I am so sick and tired of having problems and I can't tell what is hurting because I hurt all the time so I ignore things. I certainly will postpone the Mammogram if it is still so sore. I am really glad I did not have this and go have the mammogram because it would have squirted out all over the place I am afraid. I was dreading it because I was sore and then we had the flooding so I was glad to choose a different day but then I got more sore and it got redder. Scary!!!! Gross too.
Carolyn
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Thanks, Jennifer! I'm on day 8 post-chemo and still feeling weak, which you know at this point starts to get old! Glad to know in a few more days I should perk up a bit. I am so glad to have found this site because it is an encouragement to know of others...and many of our age,even..that are making it through this. Hmm...don't know if 10-15% of even MY hair would be enough to keep!
The fasting sounds TERRIBLE! I too have found that if I don't eat, my stomach hurts worse. Plus, we're weak enough from the chemo and food is energy. I have probably lost about 7 pounds, because eating is tough even without nausea or much of a taste problem(my mouth just feels a little scalded). You need protein to build back those good cells that the chemo is killing. Just be careful!
Carolyn...oh, my goodness! The surgeon should have seen you immediately and not tried to bounce you to someone else! What in the world!? I'm glad you have some antibiotics now...but you keep a close eye on that and if it doesn't look alot better in 3 days then someone needs to see you. May need to get a culture of that exploding goo to see what antibiotic will work.
Take care!
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On the ooph question - I just had one on Monday 6/21 at the same time as BMX with TE's. So three surgeries same day. Opted for ooph as found out was BRCA 2+, same reason that I got the BMX. Did Chemo first - and after about 3 treatments the cancer mass couldn't be detected on manual exam. Was originally thinking lump, but once I found out about BRCA status, that changed my mine. Only reason that I had genetics tests was that I was diagnosed young - 42 - and no history of BC in my family. Was surprised to find out I had the gene, but it made my decision on surgeries easier. I was in the hospital for one day, and am home now. That is my story.
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STLCardsfan: I had a mastectomy on only the affected breast and have wished every day that I had gone ahead and had them both removed at once...so, good for you! Just didn't have quite enough time to make that decision (surgery was 6 days from diagnosis). I haven't had BRCA testing; maybe that will come later. I also have no family history of breast cancer. You would think that someone with NO family history would NOT have the gene. But then nothing about breast cancer really makes sense, does it?0
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stlcardsfan, I am really surprised and sorry that you tested positive for the BRCA gene. I have been on the fence with wether to do the testing. I have been told that it is rare that HER2+ cancer test positive yet my mother had bc in her 70's and her sister had bc in her 50's and I have struggled with the thought of it all being just a coincidence although that is what my onc and the genetic counselor fall back on. They don't feel my risk is high but of course they say I can go through with the test if I choose to and I am pretty sure my insurance would pay for it all!
Anyone else test positive for the BRCA gene?? Any thoughts on the testing or info someone else has learned?
Carolyn, sorry to hear what you have had to go through! Hope your feeling better!
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