Taxotere, Carboplatin and Herceptin
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Lisa, Bold, etc. Sounds like many of us who have finished our TCH are having a tough go of it now. . The doc will be making me start my five years of Arimidex soon, so I will be joining you all with the hot flashes and the joint pain--about which I am very worried.. In preparation, I am still doing acupuncture, have restarted the relaxation exercises, and yesterday went to my first yoga class since December. We also know that several of the anti-depressants are now not OK to take with Tamoxifen (or Arimidex, I bet). And, I told you all that everyone in my life is treating me like I am though with the "treatment" and alll that remains is minor. I feel like I am just at the beginning of the real slog and the very long, tough haul, but with much less sympathy and support, as well as much less patience of my own. Oh, and then there is radiation. I start on the 22nd. I finally found out today about my schedule. My appointments are a different times every day and almost none of them are in the time period I requested. It makes chemos look easy! Hang in there. I guess we are going to have a long road than we expected to travel together.
NYMom: I travelled during chemo and felt good enough on week 3 to have been able to take a vacation, so long as it did not involve strenuous activity and a lot of running around. You will have to travel with more supplies than usual, but it should be fine.
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Hi campers. I changed my picture to show you my new wheels carolyn told you about...yep drivin with top down no matter what the weather. This journey has taught me a lot and one of the things is to enjoy today. TODAY! I am, or was, a Toyota Corola, or Honda Civic kind of girl, but look at me now. I am living in today, I got dressed up the other day....long time since I wanted to...and put on some fancy jewelry I had bought in Mexico with lots of glitz and sparkle. I bought it before dx and was saving it for a special occasion. A neighbor saw me and ask where I was going all dressed up and what was I celebrating. I said, "going no where I am celebrating today!" So for you who are struggling today with chemo just know you will again feel like letting the wind blow through your hair whether on a horse or in a car. I thought I would never feel this good again, but when your in the pits of the chemo you think that way. I am here to encourage you to let you know you also will come through this and enjoy living again.
Ipohgirl: I think of you often and I know your fifth chemo was ruff on you, but you are at the end of the tunnel now girl. One more and your done!!!
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Denali...That is a great idea about the gratitude journal and good things in life list! I am going to start doing that everyday. I think it would be very beneficial.0
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Cupcake....Nice ride and you deserve it!!0
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Cupcake - I am so glad you posted! hearing from you sounds so dang terrific makes me feel like a sissy. I am so glad you are out living life! Cool wheels! You are right. We are here to celebrate life. Our Lord and Saviour chose to take us down this path for a reason and it is up to us find out why. Thank you so much for that reminder. And thanks for caring enough to let us know you are well and check in on our "TCH family". You are my chemo hero, always have been and always will be.
Sailor post chemo absolutely has its issues!!! And no, we do not just wake up the day after the last tx and hit the road running. My husband (great man) said this evening that I am going thru post traumatic syndrome and this is very normal and acceptable as long as we get the proper guidance and treatment,
To everyone that responded to my selfish rant this morning: Thank you all so much! You have no idea how much you helped me. My husband was so upset and frustrated with me last night because I was not calling the doc and demanding answers and demanding what I knew I needed - not like me at all,. After reading all the support from you guys today during my lunch hour, I got motivated! I got my spine back! I picked up that phone and I demanded a solution! The office gal in the oncs office was my first victim. God bless her! I told her what my problems were and what the gals on breastcancer.org said I needed to do to fix them, She made sure the onc nurse called me back and I told her the same thing, I demanded Effexor and gave them an earful for not notifying me about the bad mix with tamoxifen and paxil. The nurse started to get on to me about abruptly stopping my paxil and fussing that I did not call them first before I discontinued the drug.. My responce: 'A new study came out nation wide on Sunday before last that tamoxifen users should immediatly discontinue paxil, zoloft and prozac as they wipe out the beneficial effects of tamoxifen - WHY DID YOU NOT CALL ME"? No answer from her, imagine that. I am over the hump and standing up for myself again. How dare that women fuss at me. I was being my own health care advocate. Good damn thing too! They would have let me go on for two more weeks until my next appointment.
Based on you great ladies, I have a synopsis of/for my problem:. Post traumatic chemo experience., being thrust into instant menapause with tamoxifen, regular menapausal side effects, stopping paxil abruptly (really bad idea looking back)
I am moving forward. Got a script for Effexor.
I made plans to meets friends and ride my horse in the morning. That will make the world right.
Thanks to everyone. What a support group!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Lisa
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Denali - Congrats on being done with chemo.. I have my 2nd tx tomorrow (dreading dreading dreading it). I am looking forward to being done with my 3rd, so I can say I am 1/2 way through.
I had a port put in yesterday and hopefully they will be able to use it tomorrow. The area where the port was placed is still quite sore (I didn't expect it to hurt as much as it did), but it is better today..
I am on day 20 and I still have hair.. but shedding like a dog. Can't bear to shave it off yet. I did cut off the length and am sporting a bob now, around ear length. The shedding is worst in the morning, but still have enough hair and no bald spots
Lisa - I have been reading your posts for quite a while now, and always look forward to seeing your name pop up. I am so sorry you are having a rough go of it right now. I think everyone here has given you some good advise. Talk to your doctor and don't hold back. How did it go with the accupunture ?
Cupcake - love the car and love your attitude !
I had to catch up on several pages of posts, I haven't had a chance to get on lately, seems like I am always at the doctor's !
You girls are great and like so many others, I feel like it's a lifeline. Our families and friends are truly wonderful and great blessings in our lives, but honestly I feel like no one truly understands what we feel and what we go through like this group here. And I swear.. if one more person says to me "it's just hair", I am going to lose it.. I don't see anyone shaving their hair off in sympathy! Whooo, felt good to get that off my chest.
Joni
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Journey, we must have been posting at the same time. Yes, I agree the ladies on this board are a life line.
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Joni: My husband is half bald and he wouldn't even go all the way with me...lol It sure gave me a deeper understanding of how bald people are sensitive to hair loss when I lost mine. I felt so good when mine came back, but haven't forgotten his won't and I have to be heart felt for that. Your right so many try to understand, but it takes one who walked the walk to truly understand exactly what you are talking about.
Lisa; Thanks girl..talk about who is being strong here. You are GRRRRR...ATE as Tony the Tiger would say. What doesn't kill us makes us stronger yes?. You know Lisa I was thinking of what you said and true life isn't tied with a bow sometimes, but it still is a gift. When we think of Jesus at Gethsemane and his anguish of what He was going to have to face He said, "Not His will but your will Father be done." Then I thought can I not say that much by what He did for me on the cross ? I came to the point that if the Lord could use my body for His glory then I too would say, "not my will but your will be done". It didn't come at first, and although I wasn't going to be crucified I sure didn't want to have this cancer and go through all the treatments, but I came to accept it, and at times when that storm raged through chemo at times I could barely here His voice, but over the storm I heard a whisper say, "I am here with you". Over all this time I have been given so many opportunities to share the love of Jesus with so many that otherwise wouldn't listen. I have a much deeper understanding of love today than I ever had before. So since I have crawled out the other side of that tunnel and begin to stand upright again I can say, "yes Lord I see now, and thank you for seeing something in me you could use. Each of you who post and lift a hand to a new camper coming in scared to death of what faces them are helping in that same love. The senior campers who helped me will never know how much I love them for each post that helped me along the way. The reason this sight is so popular, and continues on is because it is working.
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Joni, you are right about the hair. My husband offered to shave his head too but I said no since he has to be out in the sun so much and he does not really have thick hair anymore. I know it is not really about the hair but it is the outward appearance of the ugly cancer inside and the bad chemo we go through. I didn't really get too upset when I was in treatment but once the hard treatments were over and I was back working in public I wished I had my long wavy hair back. I have had a woman say" whydid you get your hair so short!" I told her it was not a choice I had to make, that I had been sick. She finally got it. Most know where I have been and some have been there too. Others think it is cute to have this short hair but some say they will be glad when my pretty hair comes back. Yes, it is only hair but it defines us and we want to be normal again. Vent all you want to about it. You could also say I want my life back like it was and NO CANCER. It is really saying the same thing.
Congrats Denali on finishing. I never had but one pic taken of me with my hair gone. I am not big on pics of me anyway. You and your daughter are sweet. My daughter had to go with me a couple of times when I was getting blood and she was so worried. Her and her husband were building a house and with me sick and then her Dad having heart surgery I am surprised she kept it together so good.
Hang in there everyone who is still struggling. It will be past soon but I am not saying it is easy by no means. I had problems with everything. Chemo,rads and I still have some problems but I do know God is with me everyday. Sometimes I feel like I ask for more than I thank him for. I know he knows my heart though, he just likes to hear from us.It is like meditation when you you pray. It gives you a break to think things through. I like the idea of a journal but I just never did it even though someone recommended it to me a long time ago.
Lisa, I am so glad you are up and fighting again. You go girl! We are your cheering squad. I hope things get a lot better for you soon.
gramma23
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Thanks to all regarding the vacation advice. It has put my mind at ease and I appreciate it.
Cupcake: I am very thankful for the love senior campers show by helping the new ones (being a newbie myself). I can see just by reading all the posts how much help and support it provides to everyone especially those of us who are just starting out and have so many questions and fears.
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I'm back after my blood transfusion day yesterday. My body didn't respond like it did last time my heart rate is still high so I hope it comes down in the next couple of days. I feel okay today but I will see as I go thru my pre-op running if I start to feel better. I have 5 days to get my house in order and I don't think it's happening especially when I planned a day at the zoo with my friend and my kids...hehe...
Besides all of this I got to meet someone yesterday who also had Her2 BC and she was tons of fun. She had not meet anyone who had Her2 BC so we talked for a long time. She finished 3 days after me and we looked like we had matching hair doos.
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Hey Denali! Hope the side effects have been light! No more Chemo! Yippee! Is it okay to be jealousand happy for you at the same time??
I am feeling exactly like you did before you went in. My platelets and RBC's were low on Tuesday. I go in for my 6th and final one tomorrow, but I can't get excited. I have been shown the door before due to these numbers and I cried like a baby. So tomorrow I'm going in expecting to be told "no"-maybe that way, it won't hurt as bad! If they so no, I'll try again next week. What's one more week in this whole journey!
Maggie
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Hey all! Jamieh suggested I ask this question here...
I'm 40 years old and in decent physical shape, no other problems except for *&!#@ breast cancer. I just started my TCH on Tuesday. I'm on the three-week dose schedule (6 xTCH/H/H). My oncologist isn't putting me on the neulasta unless my WBC count dips too low - I'll be getting bloodwork every week.
My question is about side effects: when they start and how long they last. I felt weirdly fine all day yesterday (probably the steroids), then this morning started to lose my appetite, and now I'm just queasy.
What were your "side effect" rhythms? When did you start feeling bad, what kinds of SEs did you experience, and when did you pick up again?
I know this is SUCH a newbie question, but I'm curious.
Thanks! L.
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That's the right attitude, Magnolia, go with the flow. One more week is just a detour on the journey. BUT in the meantime--REST, REST, REST! I really think that's the only thing we can do to help the blood counts revive. Pretend you're just a slug on the couch. Do NOTHING.
I don't know why it gets to us so much, when our chemo is delayed. I think we're so caught up in a calendar and the finish line, we can't think of much else. But on the bright side, we get an extra 'good' week.
Let us know how it goes tomorrow!
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Jamieh, isn't it nice to meet a "kindred spirit"? I'm glad your treatment went well. L.
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It was very nice to meet her Laura
She is such a sweet person and is a chatty kathy like me 0 -
Kaidog, you sound pretty much on schedule to me. The worst thing about the first tx is the unknown.
Thanks for all the support everyone. I am back to being me (or at least closer). Rode my horse today, did all the loading, hooking up the trailer, etc. by myself. It was really good therapy for me.
Lisa
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Lisa nothing better than horse therapy
I go for my pre-op blood work tomorrow. I sure hope that my RBC count and everything checks out. My pulse is still racing along and my BP is low so I am a little concerned. I am scheduled for my exchange next Wed. @ 10:15.
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Lisa, I'm so glad to hear you are doing better. That's our Lisa.
Kaidog, Like most people I felt fine on day 1 (the day of chemo) and day 2. Sometime on day 3 or day 4, the ton of bricks would hit and I'd be really tired. My onc also doesn't do Neupogen or Neulasta at first and sees if you need it. The first chemo I continued to feel bad through day 8 and had a blood test then to see what was wrong. My WBC was really low (didn't realize that that could make me feel so worn out - it felt like a terrible effort to even sit) so my onc started me on Neupogen and on the rest of the chemo cycles I got that proactively. It took a couple of days to kick in and then I started to feel better. The second cycle, my bad time was only a few days, but it got longer on the latest cycles as the cummulative effects of chemo got to me. Week 3, I always felt pretty close to normal except for the last cycle.
I got a cold during cycle 5 and I think that contributed to cycle 6 being rougher. Plus I was quite anemic and on my post chemo blood test 3 weeks after Tx 6 my magnesium was very low. At that point they gave me IV magnesium and a transfusion of 2 units and I felt better almost immediately. My low magnesium was probably due to vomiting. It is uncommon, but off and on during chemo, I had problems with sudden vomiting where I would suddenly get nauseous and it would happen before I had a chance to take anti-nausea medicine and have it take effect.
There are the symptoms everyone or almost everyone has like getting tired a few days after chemo, anemia or losing hair and then there are our own unique reactions to the TCH cocktail like some getting mouth sores (which I didn't) or my tendency to lose my dinner without warning.
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Jaimieh, love, prayers and hugs headed your way! I am sure you are looking forward to the procedure.
I have a chemo brain experience that I am really upset about. I think this is my only and biggest mess up. Tonight was the graduation ceremony for the full cosmetology students at the school where I teach. None of these students are "mine", but I interact with them daily and I have "subbed" and taught my speciality when their syllabus called for it. These kids are also the group that has seen me all the way thru cancer from dx to today. The last thing I said walking out of the door yesterday was "I will see you at the auditorium tomorrow night". I forgot. I never showed up. The thought never crossed my mind. I was supposed to be there at 5:30pm. My boss called at 8pm to see if I was OK and I was puzzled by the question, I did not have a clue. It took me a few minutes to realize what I had done. I feel terrible. How could I just forget something so important? I feel lower than a slug.
Lisa
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Kaidog...You need to know that everyone's side effects will be different. I was like you in the beginning wanting to know everyone's SE's too. I have had 4 treatments so far and will have #5 on Monday. My onco didn't put me on Neulasta either the first time and my WBC got down very low and I developed thrush and another infection on some stitches I had. I have gotten the shot ever since and haven't had any problems there again. I started to lose my hair 16 days after the first treatment. The days I feel the worse are days 3-8. I am not nauseated much at all, I am on Emend which really helps. My energy level is zapped, I can't do anything for more than 10 minutes and I get too tired, so I have learned to just rest and take a nap if possible. I get a lot of heartburn, which I never had before chemo, but the last time I took Prilosec OTC and it really helped. I have learned to drink at least 10 glasses of water a day, it helps. I am shaky and in a chemo-fog where I can't think straight. I usually have mild diarrhea the second week. I take off of work the entire first week, and then work half days the following 2. After the last treatment, I started having a lot of night sweats that keep me up at night the first week especially. I think I am in chemo-pause right now. I haven't had a period since a week after my first treatment. I write down all of my side effects each day for the first week and compare them each time. Good luck and keep us posted!0
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I just began my first round of TCH (of 6) and am experiencing a rash that is spread over my face (mostly where I got acne in my teens) that is white heads that appears with an hour. The area will be clear one hour and suddenly a painful white-head will pop up. The chemo nurse (who told me in a most bored manner) told me that this was a 'normal range' rash and I should use Head and Shoulders Shampoo to treat it. Has anyone ever experienced this? It's pretty painful!
Also, I had a lumpectomy back in late April, but still experience site pain and breast 'twinges'. Also normal?
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Lisa: Please don't beat yourself up for forgetting. You can't help it....you're having Chemo girl!!!! People will more than understand. Don't put so much pressure on yourself. Sounds like you have a lot on your plate. I had my first treatment yesterday and I felt out of it all day. I guess it just goes with the process. So crawl out of that Garden, and wipe that sludge right off!!!!!!
Hugs Jamie
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Hi Racesmom,
I had a lumpectomy May 4 and still get breast twinges and some site pain. I haven't had any of the blemishes but have read about them recently.
Lisa, we are usually our own worst critics! I agree with Jamie, be tender and loving and forgiving with yourself. Chemo brain is tough! I had significant chemo brain Day 5 and 6!
I am day 8 and have been having mild diarrhrea since Wed am. SE's haven't been too bad.
Linda T
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Lisa,
you can vent here, we understand. I'm 5 week post chemo, still have to sleep with a fan facing me. I just lost 1 fingernail last night, looks like i'm going to have a few more falling out. The nail-less finger looks so ugly, and I am heading back to work this Sunday. Life goes on even when I'm not ready to face the world. Be strong!
Cil.
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Thanks guys, but I am 17 1/2 weeks post chemo!
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Kaidog - I have only been through 2 treatments so far but I have felt the worst on day 3 and 4 as far as the queasy feeling and heartburn goes. Intestinal cramping from day 4 to about day 10. Not too bad with the tiredness yet and I have been able to work week 2 and week 3. My onc also did not give me Neulasta yet, only if I need it. I noticed a few mouth sores in the past few days and one weird possible side effect I have is some eye twitches. It started about day 4 of both treatments. First time it went away after a few days; this time it is more annoying. Not sure what that is all about. Hope your side effects are few.
Racesmom - I have also had a face rash after both treatments. It was the worst on day 2, got better then I have broken out again around day 5 with small pimples and redness. I do have rosacea so the treatments aren't helping matters. Let me know how the Head and Shoulders shampoo works out for you. Maybe it is something I will try.
Lisa - Don't be too hard on yourself. I know a few people (my husband for instance!) who forget important things without having gone through the rigors of chemo.
Hope everyone has a good day.
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Racesmom...I got bad acne after my first treatment too. I just kept it clean and didn't wear make-up, it lasted about a week. Then I had it again again on my scalp after the second treatment. I have been using head and shoulders on my scalp ever since then and haven't had a problem. I didn't try it on my face.0
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Lisa, I still get days I can't remember the simplest things. I had to made some bread and a cake for a funeral today and I was so concerned I would forget to make them. I set stuff on the cabinet where I could not miss them and that helped me remember. Another time a few weeks ago I was supposed to go in to work early and I just flat forgot to go and they had reminded me Friday but it was a long weekend at Memorial Day so I never even thought about it on Tuesday when I was supposed to be there. They would not call me to tell me I was supposed to be there. I did feel bad but I just told them they know how I am right now and they should have called me so the other person would not be late to their engagement. they don't understand I guess but I am as bad or worse than I was during the chemo.I have forgotten things in years past for no reason except I was so busy with work and things around the house that it was just too much on my plate but that does not help the embarrassment it causes me. This too will pass I guess but I don't think is any thing we can help. I work at remembering stuff.
For anyone who is just starting chemo I would say write on a calendar when you started feeling sick and what was going on with you and maybe you will develop a pattern. This way you can schedule around the bad days. I would have my treatment on Wed and by Friday I was queasy and by Sunday I was sick as a dog. I would have to miss church on those Sundays but I could make it to church and teach class the rest of the time. I could not eat for a couple of weeks but by the third week just before the next tx I would feel hungry and try to eat so I could gain some weight back so I would not mess up my dosage. I never got it all the way back but enough to not have to change anything. some are keeping a journal but I am not a journal keeper. I applaud anyone that can. I may even be a help to the newbies or someone close to you that has cancer too.
gramma23 (Carolyn)
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Lisa - I haven't even started my treatments yet and did the exact same thing on Tuesday; told someone I would see them that evening at my quit smoking group and TOTALLY FORGOT 2 hours later. When they called to ask where I was and what happened, it took a few minutes for me to figure out what they were talking about. I used to be the schedule keeper queen and now I can barely remember to take my daily vitamin... You have been an inspiration to so many of us newbies. Please don't be so hard on yourself it is only human to forget now and then...
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