Taxotere, Carboplatin and Herceptin
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stormynyte - such a bummer, but it may also dissipate on its own - I am hoping for that! I wonder also if it could be plantar fasciitis - Taxotere can irritate all soft tissue. Try stretching your foot out as long as it is not too painful.
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Stormynyte My feet got sore on Taxotere especially went I walked a lot. I also had/have neuropathy in my left heel but that's more numb for me. Be sure to talk with your onc before your next TX. I know one friend of mine had nueropathy so bad after 1 tx of taxotere her onc wouldn't let her get another and changed the type of chemo she got. Her onc didn't want her to have permanent damage (which she did not). I'm not saying that will happen to you but you want to be sure your once knows.
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The more I've been reading that's what I'm starting to worry about. Permanent! Scary. Still today I can hardly walk, both feet are just killing me.
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Stormynyte. I don't know how much your onc is flexible, but I had some side effects immediately from Taxotere. Cotton tingly toes, tingling fingers, odd lumps on my foot. My doctor did a micro tissue test to see what drugs would be most effective. Turned ot tax was not even beneficial to reducing my rumors.
I had the effects last a few weeks, so I can only imagine the results after 6 rounds.
Something to ask about. There are many chemo drugs to choose from. I am sure they all have their purpose.. But it doesn't hurt to ask. Like lago said.0 -
I had the tingly fingers and toes while i was on it. After i went off I still had numb fingers and toes. A BC friend suggested a vitamin b supplement . My hands are better and my toes are a little better, she said it takes awile! Also near my last 2 treatments my muscles got so weak I had to pull myself up to stand up. my MO gave me a magnesium infusion and I took it orally for a bit and that helped!
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Jittersmom, I had the same SE as you. I was so weak hubby had to help me up off the recliner, because I didn't have the strength to kick down the leg portion.
Five months from last chemo and still have have some numbness in fingertips and toes. Funny, some days I don't notice it, other days it seems worse. I'll try adding in some extra Vit B. My onc told me it's going to take along time.
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Hi - I figure you all are the best ones to turn to now - just going through one of those times when I am reading too much and getting scared. I know this will pass - been here before - but I am thinking "why me"??????? I am tired of dealing with the whole thing - Herceptin and the "p" drug (I'm in a clinical trial - for perjeta) 'til July. I look in the mirror and it's not me. A year ago I had long hair - today I'm hoping it gets to 2 inches... I've done really well - and have so much to be grateful for - but I need a chrystal ball - anyone out there have one? Sending hugs.
Marilyn
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cvmarilyn it takes a while to get back to "ME." I think I started about 12+ months PFC when I was about 2 months done with Herceptin but it really was more like 2 years PFC. Granted I has some reconstruction too so maybe that's why it took longer but not so sure. It takes your body some time to recover from all these chemicals and this life changing diagnosis. I have no idea what perjeta is doing to you either. I didn't get that.
That's all my crystal ball will tell me right now
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Marilyn - I was dx in 3/09 and just passed my 4th anniversary of that. I had chemo/Herception from 4/09-4/10 (the chemo was only the first few months, and then a year of H). I got the port out in May of 2010. (I also had radiation thrown in there too.)
It does take a little while for the intensity of the experience to start to fade, but IT DOES fade. I swore I would never forget even one detail of everything I went through - but now, when someone asks me something specific, I say "hmmm, let me think"....because it has slipped down below the horizon in my memory.In 6/10 my daughter got married, and now, 3 years later, she will be having my first grandchild in June. SO excited.
I travel, go hiking, lift weights at the gym, work hard at my job - just landed and implemented the biggest account/project of my career this past summer. Busy with family, friends, tailgating at the local University football games in the fall.... and so on.
Yes, I go to the onc and surgeon 2x/year. Yes I take my AI daily.But overall, the cancer experience has slipped into the past almost completely. Life is wonderful and I do not take even one day of being healthy and normal for granted. I don't hesitate to make plans for trips or other things in the future the way I did a few years ago (you know, the 'what if's' your mind tells you). I just go forward and live my life and am loving every minute. (Well not EVERY minute, but you know what I mean.)
The treatment is HARD. I would not minimize it for one minute. It is the hardest thing I have ever done, and the thing I am most proud of. But there is life and health on the other side and it is SO worth going through to get there.
Somebody once told me "Just keep putting one foot in front of the other, and pretty soon you'll be walking out the door." That was true in the cancer world, and I tell myself that in many other situations that are challenging. And it is always true.
So one foot in front of the other Marilyn, day by day, step by step. And you will be writing this type of email in a little while to those who come behind.
Feel free to PM me anytime if there is anything I can do for you - or anyone on this thread.
In support & sisterhood -
love,
Amy
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Hi - thank you both for writing me. I went out with a friend today and feel better. I am so very grateful that you took time to write me - it is so good to hear from women who have been on this path - and gotten through.
Love,
Marilyn
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Amy, that was an amazing post. I took a screenshot of it to save to my FEEL GOOD file.
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Thanks Amy. Good to hear such positive news on the other side of the battle. It helps remind me there is light T the other end.
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You are more than welcome. I remember when I was dx, I absolutely FELL APART. I was always 'the strong one' and supported everybody else around me with their challenges but this completely wrecked me. I couldn't eat, sleep, or barely function for the first few weeks. One of the nurses at the surgeon's office took me aside and said "When you are on the other side of this, you are going to help other women" and I looked at her in complete disbelief - I truly could not possibly imagine a time could ever come when that would happen.
So as I progressed through, I made it a goal and commitment that once I was on the other side of it, I would stick around and provide encouragement on the emotional/psychological side of this battle. There are some women on this board who are SO knowledgeable about the medical stuff; treatments, SEs, options, etc. I can't offer anything on that side. But I feel a passion for helping women who are struggling with the other parts of it (the parts that, quite honestly, the docs aren't that good at helping with). So when I see someone struggling, I try to write a note describing my progress and my life now, to give a vision of the future. Because I really believe it is that vision of life on the other side of all the awful, intrusive, challenging medical stuff that pulls us through.
Many women use BCO as a resource and then, after treatement, feel so relieved it is over, they move on and go about their lives and don't look back. But I encourage you women who are going through treatment now - once YOU are on the other side, consider sticking around periodically to offer a word of encouragement to those coming behind you. And unfortunately there will be many coming behind.
Love to all - Amy
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Amy - you are a real blessing, and I love how you encourage so many here. You certainly have done that for me! I just went in for # 5 of 6 chemo treatments today. I can't wait to be done, but I hope that I can serve as someone - like you! - who will use my expericence to help other people. That will certainly be my goal. Thank you, friend...
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Duckie - one of the reasons geese honk when they fly is to encourage the other geese in the formation. Did you know that? So keep on going! HONK HONK!
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I power walk through the park and there's lots of Canadian geese. I wonder if using a goose horn would get them to move out of the way.
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i don't know. But they SURE make a huge mess when they take up residence anywhere. They look graceful and romantic flying in formation. On the ground...not so much.
Maybe an air horn would work.
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Amy - you are SOOOOOOOO right. I have told people that if you make a pie chart of "Cancer" there's a part that's physical but a bbigger part that's psychological. It's almost more challenging to go through that. I REALLY appreciate your being here for me/us. I, like you, am the strong one - and this has really challenged me. But I know that I will make it through and hope to be here for those who come after.
Love always,
Marilyn
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Hi everyone, new to this thread. I've been posting over at the 2013 Sister Warriors. I'm having my second treatment in oh, about 5 hours. I made the mistake of taking the cortisteriod at 7 pm instead of the "no later than 4 pm" and I am certainly paying for it. The hubby is fast asleep and the dog is snoring away!
I was wondering if some of you can share the cumulative effects you experienced. Overall after my first round and the neulasta I had the following:
- only nausea feeling in morning when I woke up due to empty stomach for first few days. The zofran worked great.
- the three days post neulasta were hard! they are not kidding about the bone pain
- fatigue was managable but the MO told me that will increase
- I've got the runny nose and slight bloody nose when I blow my nose
- dry mouth and dry eyes
- general body ache for the first few days
- of course taste buds gone
- hair as predicted started to fall out this week. buzzed the long hair and pleasantly surprised that I can rock a buzz cut! I have wigs but I've only worn out to dinner with hubby and one to work. As the weather gets hotter I'll be wearing the scarves. My husband shaved his head in support. He says he looks like Charlie Brown and is growing his back. Love him for showing me support. He's my rock and we laugh a lot together.
thats about it. Symptoms disapated in a week and I slowly worked my way back to 1/2 days then full days at the office. I think I've been sitting up wondering if the other shoe will drop and when... While I have been eating better I cant seem to get out of the funk and back to a exercise routine. Its maddening that I am procrastinating.
From what I'm reading it looks like #4 - #6 are the hardest. But as my moniker denotes I have a really positive attitude and this is a journey I have to go through. Giving up a year to treatment so I can have the rest of my life to live!
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PositiveThnking
Nausea hopfully someone else will chime in because I was one of the lucky ones that didn't have it on chemo. Just be sure to keep something in your stomach and don't eat rich spicy foods.
The first nuelasta shot is the worst. I'm not saying you won't have any discomfort but I couldn't even stand up straight for a day the first time. I took an OTC pain killer (check with onc) for that.
I had some fatigue but not like flu fatigue. I was either lucky or my daily power walk helped that.
Bloody nose is not unusual on Herceptin according to my onc. I had it too. I think it's a combination of your nose being dry and your blood being a bit thinner. It eventually stops but be sure to tell your onc. I had some pretty bad ones that took a while to stop.
For dry mouth use Biotene mouth wash. Also take good care of your teeth. Brush and floss. Dry mouth can really do a job on your gums so take care of them.
For dry eyes use OTC artificial tears. NOT the kind that gets the red out. I actually still have to use them on occasion because taxotere did slightly clog one of my tear ducts. It's not bad enough to get it repaired though.
I started to get mouth sores so my onc had me suck on ice chips during taxotere infusion. I never got another sore… and my taste changes were pretty minimal. It might of been because of the ice chip sucking activity.
I found with the SE they don't necessarily get worse, they just last longer. So if you were tired for 1 day the first time by the end it might be 3 days.
Be sure you exercise, even just walking every day if you can as well as drink plenty of non caffeinated, non-salty fluids (soup counts). It makes a huge difference.
I'm sure someone else will fill you in on their experience. It's not the same for everyone. BTW I had constipation. If you get constipation or diarrhea don't wait to treat it. For me I found Metamucil as directed on the package worked best. Not bloating and good for the system. I got the constipation on TX2.
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As lago said, most of the SEs don't really get worse, they just last longer.
For me, Nausea was a big one right from the first. I had just Zofram but it just wasn't quite getting rid of it. They added Emend on the second one which only improved it slightly so on the third one they added Compazine which finally beat the nausea but also left me feeling more drugged during the week I was taking it.
I was fatigued but it seemed more mental than physical to me. I just lacked the will to really do anything but I wasn't really sleeping that much either. That pretty much lasted from day 3 of chemo until day 9 of chemo. I think the nausea drugs were a part of that though because the effect felt worse as they added more nausea drugs but I would feel a lot better as soon as I was able to quit taking the nausea drugs which was always on day 10.
I didn't really have issues with losing my sense of taste until about the second chemo and it started with just a few days and by the sixth chemo, it was almost constant and lasted about a month after my last (sixth) chemo. It messed up my eating a lot because I just couldn't stand to eat a lot of stuff because it tasted 'wrong'.
I didn't get Neulasta. I was given Neupogen which was administered in 7 daily self-injections. I had some slight bone achiness which got a little worse each time but was easily countered by Tylenol. I never had any bad dips in white blood cell count.
I didn't have mouth sores for the most part. I got a lot more minor infections but nothing big enough to give me a fever.
The runny nose and watery eyes didn't really hit me until the last chemo (Nov 2012) and lasted about 2 months. I still get them but not as much now.
I started having issues with my toes about midway through the chemo though it would only last a few days at first. I don't have 'numbness' but it's more just a feeling of wrongness. I had some swelling as well right after the last chemo. I still am having the foot/toe issues with peeling and blistering which seemed to get worse about a month after my last chemo. I still haven't gotten back into taking walks because of the discomfort of trying to walk.
I had almost no constipation. It was always the diarrhea with me. Immodium helped a lot whereas the Pepto Bismol that I would normally use didn't help at all.
I'm glad to be done with the chemo but I really had expected all the SEs to disappear after my last 'bad week'. I still feel a ton better but I am still waiting for 'normal' to reappear. My hair is growing back. It seems slow but then I have never had to grow it out from nothing before so I don't really know what the normal rate should be. I'm still going to be wearing my scarves for a while though because I don't really like seeing myself with such short hair (about 1/4 inch right now). I've never worn it short so it's like seeing a stranger in the mirror when I see myself with nothing covering my head.
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BTW I did have other SE including nail issues, minor neurpathy in my left heel (which I still have but not a big deal. It can predict bad weather
) watery eyes, nose bleeds, flickering eyes, stiffness and probably a few other things. It sounds horrible but really not painful. Just annoying by the 5th treatment.0 -
Hi - I agree with Lago - the side effects are managable. Make sure you take the antinausea drugs - and stay on top of those - especially the first days after chemo - my body would tell me when I could back off. I craved protein - especially chicken!!! And tortillas with cheese. One thing that bothered me was drinking water from a plastic cup. So use a real glass. It took me a while to figure that out so I avoided water for a while - which isn't good. My MO told me to take Claritin an hour before the Neulasta and that really helped keep the achiness in check. I also loved lemonade. My last chemo was 10/31 and it really does seem like such a long time ago - almost like an out of body experience. You will make it. And there are so many people here for you - this is an amazing community - so glad it's here.
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Hi all -
Finished my second round at the chemo bar on Thurs and had my neulasta shot today. So far so good. Runny nose and probably a tinge of red again when the taxotere kicks in. I have the burps this round. But that's better than nausea! the zofran in the morning is the only one i need. Will start the tylenol tonight and keeping fingers crossed I have a better weekend with the bone pain than I did last time.
Getting a little more dry eye and of course forgot to go get the eye drops. Will do that tomorrow or send my hubby on an errand.
It is helpful to read other experiences. I actually can tell that my taste buds are going on day 2...so it'll be back avoiding favorite foods. No food aversions for me!
Have a good weekend everyone!
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Hi PositiveThinking. I haven't been on in awhile because I am fighting sinus problems. Funny, I NEVER had sinus problems in all of my 53 years, but now................I think part of it is that I live in another state from my lifelong home, but I wonder if the chemo has something to do with it.
I thought I would tell you about my experience, to see if any of it helps you. It looks like you've gotten good input already, but thought I'd share, anyway.
My first chemo was the worst. I came thisclose to calling the doctor and telling them to just forget it !! I felt so bad for about 6 days after that all I did was lay in my recliner, or bed, and cry, because I felt so awful. My onc said it was the steroids and took me off all of them, which made all the difference in the world. I only got the ones in the infusions. The second was pretty bad, in another way. I didn't feel bad, but had the trots so bad and for so long that it actually burned the skin around my hoo-hoo and hiney. Beaudreaux's Butt Paste relieved some of it. AND I saddled up with disposable undies. It was quite painful, but I new it would pass...........eventually. With numbers 1 and 2, I also had the taste bud thing. The first round, all I had that tasted good was chocolate milk. I cannot tell you how much of that I drank. I also put Ensure (choco) in the blender with some ice and made a slush. 2nd round was Mr. Pibb. Drank a few boxes of that. I tried to eat, but everything tasted like dirt. I started Herceptin right out of the gate, so I had a runny nose, and still do, and probably will until it's over and done. I had watery eyes, and they became sore, but that was from the Kleenex dabbing. I had some Udder Balm ( us country folk, HAHA) that I would dab around the corners, but had to be careful not to get it in my eyes. I burns some. Honestly, numbers 3, 4, 5, & 6, I really had no troulbe. My worst, I think, was the fatigue. I could do very little, and what I could do, was just in short spurts. I had major shortness of breath, and going to get my mail was a nightmare. I live out in the country, the hilly country, so it was uphill and downhill to get to the box, and downhill and uphill to get back to the house. I had to use a cane there, for awhile. It was excrutiating, but it has passed, for the most part. I still have my moments. I am now on Herceptin only, and the only thing I've noticed, besides the runny nose, it that for about 2 weeks after, when we go out to luch, there better be a bathroom close by. Shortly, and I mean very shortly, after I eat, I gotta go. I had only one instance, during chemo, that I lost all control, and thank goodness I was home. The Herceptin I get a warning, but not much time to get where I need to go.
I never got Neulasta, so I don't know anything about that. I did ask my onc about it, and she is of the opinion that she doesn't want to use it unless it is absolutely necessary, because of the side effects, and the cost. I can't speak for others, but I never needed it, and I'm glad. I am now also taking Tamoxifen, which has its own problems. I am cold during the day and burning up at night. If it's 25 degrees outside at night, you can bet my fan is on and the central heat is off. I get occassional bone pain, but again, only at night. This has upset my sleeping patterns, as when all these SE's kick in, I get no sleep, and I'm not worth a **** the next day.
My biggest thing now is waiting for my hair to come back. For some reason, my head is a big deal to me. I cannot stand to look at myself. The hair thing, coupled with the missing breast has done alot to me, psychologically. I know, at some point, I'll get past it, but not right now. It's just a painful reminder of a time I'd rather forget. I think once the hair comes back, I'll be o.k. I decided against reconstruction, as before all of this started, I was NOT a good patient for even the most minor of things. I have a terrible fear of needles, pain and anything that even LOOKS like it could be painful. My tolerance is very low for such things. I will say, it has improved somewhat, but the night before Herceptin, I am always anxious. During all this time, there has been only one nurse who could poke me in my port without hurting me, and I've only gotten her twice, even when I specifically request her.
All in all, most side effects are gone. My last chemo was 12/14/12. I have a numb, tingling pinkie on the surgical side, but that, it has been determined, is the surgeons fault. All he had to say about it was, "oops. sorry." There's a winner!!!!! He's one of those arrogant sorts who I think was taken down a peg or two when this was discussed. All I know is that he couldn't look me in the eye, but said it should repair itself over time. How much time is unknown.
It sounds like you've got good family support, which I did not have. The boyfriend was a complete jackass, and rather than try to be a little compassionate, he decided to just make like there is nothing in the world going on. He never asked how I was feeling, he was rude when it came to the "chemo brain", like forgetting stuff is something I could control, and he picked a few fights. I think it was all fear based, but you know what? I don't care. It's no excuse. My onc said MOST men are clueless and don't know how to deal with this sort of thing. He was in the room with me when she said that, so he rode that bike until the wheels fell off. Too bad they didn't fall off in traffic, then he would know, firsthand, what it feels like when someone says they feel as if they've been hit by a bus, which I'm sure WE ALL felt like, going through this. THe look on his face when I told him that was priceless. I think a light came on.
Take care. You'll do GREAT !!!! And we're all here for ya.
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HI Ricky's girl. Thank you for your post and I am so sorry the BF behaved that way. I feel very blessed especially how sensitive my husband is to the chemo brain and not making me feel stupid. I literally 5 minutes ago said "did you see where I put my water?" He picked the glass up off the coffee table right in front of me and said "Here you go". He's the quiet John Wayne type and I just thank him for listening even though he may not know how to articulate his feelings. They feel helpless too because they have to watch you go through it and really the only type of support is emotional..and of course mine cooks on the down days. Life is funny because we got married in Aug 2012 and who could have possibly known that we would be dealing with the "in sickness and in health" a few months later.
I had the trots with the B-Complex (to help with any neuropathy that will appear) and it did a whammy on me as well! I found a lower concentration and this time I am ok. The bone pain is less so far. I have an eye twitch today. My MO cut back the pre- and post steriods to 1/2 so I actually slept well last night. Of course reading the Herceptin effect after lunch is making me cringe. Right now so many of the things have same side effects so trying to figure out which one is causing it is hard.
Thanks for sharing!
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Rickysgirl, positivethinking, I too had the big D as one of my SEs. No warning. Way too many accidents. I actually wore diapers. you do what you gotta do. I was so surprised that my husband of almost 40 years was a big help. Who knew? I did not expect that from him. Perhaps my being hospitslized for renal failure, his moms death and his sister's stage 4 diagnosis woke him up to the fact that we are all here for too short a time. But that was my biggest surprise of all. Now I just want to know where he was for the last 15! LOL much love to all.
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ugh day nine of chemo five ; tell it short need blood transfusion day of chemo only got one bag had hard time matching it so go second bag Monday with fluids a Neulasta by Wednesday severely sick praying to make it to doc appointment Monday this is worst yet somethings wrong need prays and hugs......
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volleymom77 hang in there. Hopefully bag 2 will get you feeling much much better.
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Prayers your way, volleymom77!
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