Taxotere, Carboplatin and Herceptin
Comments
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Linda - I hope you are feeling better every day and can enjoy a day of shopping and that beautiful San Diego sunshine! I go to the chair for my last TCH tomorrow so after a crappy weekend, I hope to be joining you on the upswing!
Shannon - how did your last one go? I hope it went smoothly!
HUGS...Kelly
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OK, I have a few more questions...
In general, how does this go? I get the impression that for many the first few days after an infusion you actually can feel "ok", but then by the 3rd or 4th day most people "crash" and are pretty sick. Is this pretty much the case?
How sick are you? I mean are you bedridden and have to have someone waiting on you, or do you just feel really crappy but can manage to get to the bathroom, make your own meals (if you feel like eating), etc.? And for how long are you really sick and in pain? Do you start feeling better at all in between every 3 week infusions?
I have no idea, have only read a few people's experiences, so I'm sorry if I totally have the wrong picture in my head.
Do you need to have someone drive you to/from your infusions?
DH has taken so much time off from work for other issues I've had to deal with, that he is feeling behind and really stressed out. I have no family locally. I have a few close friends, but they all have kids and their own lives. I want to try to be as little burden on my DH as possible. I've never seen him so stressed out. It is not his nature, he is normally really happy-go-lucky. I need to try to suck it up as much as I can. Thanks all.
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Dancetracer everyone is different but I will admit day 3-4 were the "bad" days. I was never bed-ridden. At the beginning I really didn't have bad days except for the out of control constipation with the first tx. Got that handled for the remaining 5 tx. I never got flu like symptoms but did get tired at about 5pm and had to crash for a few hours.
Thing is, its cumulative. First 3 tx were easy. I was working out and everything. 4 wasn't horrible. At the end I had a lot of stiffness that didn't go away but not in intense pain. I also had the nail thing really badly but that's rare. I think towards the end you just don't have the tolerance for it anymore because you know what's coming… again.
I had no problem with the bathroom, putting on make-up, making dinner etc. If I had a job I would've been working through most of it. I think the big issue would be I would tire a bit easier. Yes most do feel better in-between. I had more good days than bad.
For me the flu would have been much much worse. I even told my onc that. With the flu I am completely bed ridden with no energy.
My avatar is a picture of me 2 weeks post my 4th tx at my niece's bat mitzvah in my wig… I purposely have not changed my avatar for people like you. I ate everything too. My taste changes were pretty minimal.
I did have someone drive me because some of the meds made me spacey. My last tx my DH finally landed a job so I took public transportation down (couldn't get a cab because it was snowing) and took a cab home. I wasn't out of it just didn't think my eyes were functioning properly to drive… and I also had very watery eyes at the end too.
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Dancetrancer ~ I am sure, from what I have read here, that every single one of us has a difference experience (with similarities, if that makes sense). I usually have felt OK the first couple of days while I am still taking the steroids. I seem to crash on the 4th day and my issues are nausea and BAD gastric camps. This usually lasts for a few days. I have also gotten increasingly been more and more fatigued just as my MO said I would. I have been able to take care of myself, however, on that 4th day I have truly appreciated it when my husband has been able to take the day off. I hate to use that vague word "doable" but that is what it is. Not fun, not always pleasant, but I have made it through. To tell you the truth, I prefer to be left alone even though my family and friends have offered over and over. But that's just me. I can't say I have been in excruciating pain. The gastric cramping really gets me, but I just swallow the Immodium and that helps after a while. I have had leg cramping, but for me it has only lasted a couple of days. Gosh I hate putting down all this negative stuff, but it has been my reality. You may have few, if any side effects. That is what I wish for you and everyone. I have gone to work in between my 3 week chemo cycles (usually the last week) and have actually felt pretty OK. I have been to dinner with friends and family after the not so fun part. I have even gone shopping and taken a card making class. My doctor told me to try and be as normal as I could during treatment. I have tried. Just listen to your body and don't push yourself too hard. You will know what is right for you. By the way my husband was pretty stressed at the beginning, but calmed down as we have gone through the process. I can say that I don't know how I would have gotten this far without him and the women on these boards. Take care...Linda
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Hi Dancetracer,
When I was on a 21 day treatment schedule Day 3 through 8 had some vey difficult moments, some worse than others. I blame most of this on Neulasta because it causes severe pain for me. There were days where I needed assistance standing up from the couch and getting to the bedroom. I was always able to walk to the bathroom on the same floor. If I needed errands done, it was better those days to have someone else do them, but I would go along for the ride to get out a little. The rest of the 21 days got progressively better.
With that said, I have made some changes to my treatment that work much better for me, and in the midst of having allergic reactions I also got to better understand how each drug effects me. (Not sure that I used right version of effect/affect...I claim the chemo brain card! ).
So, I'm now on a weekly schedule which is a little hard emotionally, but way easier said effect wise. On the week I get Abraxane (which is taxol through a human protein delivery system) AND Carboplatin I have nausea and days four and five can be an issue. On the weeks I have Abraxane and Herceptin only I feel as good as I did after day 8 above.
Carboplatin gives me a lot of side effects, so I do decadron steroid for three days after chemo.
I always have someone drive me to chemo and home because I feel like a zombie afterward, I still, pre-med for Abraxane even though you don't have too because it helps with side effects, so the combo on Ativan, Aloxi, Benedryl and Decadron plus sitting and watching movies makes me a little too snoozy to drive myself 45 minutes home.. But, if I had to, I probably could.
Don't forget that people want to help so your friends might just be waiting for you to ask. Also, many churches, the American Cancer Society and Insurance companies have transportation programs to help in situations like these.
Please feel free to each out to me if you need to talk!
Julie0 -
Linnyhopp, we could write a book about stomach cramps! I finally figured out mine were acid related and now controlled through Prevacid and Zantac together. There were two nights where all I could think of was Robin William's old joke about "fire in the hole!". You have to keep laughing, right?
. But all on all, as we all say, it is doable. I am so thankful that for every night like that there at beautiful days.
Julie0 -
Quick question: For those on weekly TCH, how many treatments will you have?
Julie0 -
Thank you ALL so much. It REALLY helps to hear what you had to say. I mean REALLY. This happening to me is tearing my DH up - I can see it. I really think I need to shield him a bit if I can.
I'm sure he'll be with me on the first one, b/c he won't have it any other way. However after that I can get friends to drive me to/from or take a cab. The tip about the cancer society offering transportation is awesome. I will keep that in my back pocket!
I hope my experience is mild, but of course, I know there is no way to know until you go through it yourself, since everyone reacts differently. It's good to hear the spectrum of reactions. I had the same fears going into rads, and I did MUCH better than I thought I would (and for that matter than my doc's predicted, too). So I am going to try to keep a hopeful attitude and refrain from telling DH the worst possibilities. I have a habit of just blabbering off all of my fears to him, and I'm realizing I need to reel that in a bit.
The thing I'm most worried about is if he has to travel (which happens a lot) and then I do get to the point where I need some help. That's gonna be rough. I have some good local friends...but I don't quite feel close enough to ask them to come help me physically. I know they would come, though. I just wouldn't be too comfortable with it. Well, that sure would either make or break a friendship, LOL.
I'm just going to have to hope for the best b/c worrying isn't going to change the outcome!
Thanks again everyone. This board is a lifeline for me.
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dancetrancer - My husband made friends at work with a man whose wife had chemo for colon cancer. It helped him to be able to talk about things with his friend at work. Maybe there is someone your husband could hang out with. It was so good that this friend had already been through chemo with his wife and could be so supportive. I was grateful. It's tough on the husbands. Sometimes at night I would feel awful and I would sit on the bed - I asked my husband to just pat my hand and tell me it would be ok. That's all that could be done. Fortunately there weren't too many of those nights. We are here for you.0
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Dancetrancer, everyone is so different it is hard to predict exactly what you will go through. Day 4 & 5 are my worst days but I am still able to get out if I need to. I've gone to the store, kids events, etc... Mostly I take it easy knowing that each day after I will feel better and better. I take my treatments on Wednesday, work on Thursday, our office is closed on Fridays and I'm back to work on Monday. Except for the first tx I have driven myself to and from with no problems.
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Thanks Omaz. :-))))))))))) That would be nice if he could meet someone to share this with. Unfortunately the few he has met have lost their wives to cancer. Not helpful. :-((((
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I too had heart burn but they have meds for that.
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Dancetracer...one thing my MO's nurse and I have talked about is comparing it to pregnancy. I forget if you have said if you have kids or not. Anyway, I had HORRIBLE morning sickness and I have pretty bad nausea with tx's. My MO has thrown the book at me for nausea meds and they help a lot. I am one that has had the bad side effects. I get treatment on Wednesday. Thursday and Friday are still pretty good, just tired. Saturday is iffy and Sunday is the worst where I don't get out of bed and on 3 occasions, have gone to the ER. Mondays things start to get better but still exhausted and mentally drained. Tuesday the energy starts coming back and the following Wednesday, it's like a switch goes off and I'm fine. By the weekend, I can run all day long and not even think about it. I am down most definitely for a week but when I bounce back, I bounce back.
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Thank you Judy! And dougieswife, even though you get hit hard, it helps to know it's not the entire 3 weeks that you are sick as a dog. All of this information makes me think perhaps I should see if I can get tx'd on a Wed so that I have more chance of having help on the weekends (which apparently sounds like would be highest chance of being sickest). DH usually is home, but even if he were traveling, at least others would be off work, and I could get help more easily. I have no idea what my schedule will be, though.
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dance - My biggest issue for all tx was the Big D. I was never constipated - I was the opposite. But it was mild enough to just be a nuisance - I had it off and on for the 10 days following each tx. Aside from taste changes, which you adjust to, and some fatigue which is cumulative, I had no real issues that kept me from doing what I wanted. I never needed help from anyone else, when I was tired I just slept. I did household chores, did the grocery shopping and cooked, paid the bills, went shopping and out to lunch - all the normal stuff. I did not have steroids before, during and after for the first 3 tx. I did develop a rash (I think from an antibiotic for a UTI) but because they could not definitively attribute it they began to medicate me with the steroids over the three days in case it was an element of the T or C. I started to have more fatigue issues with this because of the "steroid crash" that happened after that last dose. My DH has a very intense job and travels a lot as well. He came to each chemo, but those were the only days off he took. We have no family here, but my 22 year old DD, who goes to college here, lives at home. She was around some of the time, but I really did not need her to do anything - other than the occasional ride someplace. All my tx were on Thursday - usually felt iffy by Sat. but nothing too bad. I attended a wedding 3 days after #5, and did ok. By Monday after that one I was pretty fried, but bounced back decently. As all have said - take the anti-nausea meds before you feel nauseous, mine were prescribed every 12 hours for 72 hours starting the night of tx. I did not have any issues with nausea, just the lower GI stuff.
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Hi dancetrancer
There is no reason why you can't ask for a Wednesday tx day, I am sure they will be able to accomodate you. As the ladies have said, everyone is differennt. For me, even this second time around is completely different than the first time I went through this in 2006. I had my first TCH a week ago today and while I have not felt nauseaous or vomited, I have to say I have had 7 straight days now of full on queasiness. Almost 24/7. It's getting better, longer stretches queasy-free, but that is a 180 from the first time I did this where I has tx on thursday, felt ok fri and sat from the pre meds and steroids had a reeeeally bad hard to get off the couch Sunday and then went to work on Monday and felt pretty ok. This time? I'm so glad I'm not working cause I would be a wreck, unable to concentrate, generally feeling icky. I'm also experiencing more bone pain from the neulasta as well. But to be fair, none of this is so awful that I can't take care of myself, make a meal (ok heat up a meal) bathe, get dressed and out of the house for a bit. I am even trying to ride my exercise bike every day to loosen things up. I'm up to ten minutes, hopefully I will be able to improve on that
All in all - you can do it. Ya just push through....... 0 -
Ahhh, y'all are gonna make it easier for me to sleep tonight!
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dance - My onc also gave quite a bit of dexamethasone. I got a red race every time and had intestinal cramping from them. I took 20mg the night before, 20 the morning of and 10mg more with the premeds. I was always curious about other doses. The steroids are to help prevent fluid accumulation from taxotere.
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Thanks Omaz. I have a feeling I'll be heavily premedicated, since I developed 3 new allergies to medicines just this past fall. Of course I'll be asking about it! My onc also mentioned fluid retention. Just what is that about? Is it just fluid in your body in general, or do your feet swell, or do you get fluid in your lungs that is dangerous or what?
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dance - I retained fluid in my forearms of all things and had heaviness and muscle fatigue there later in the treatments. I think it is more usual for women to retain fluid in their legs/ankles/feet. I also had ativan in my premeds because I was so nervous. I also always checked the bags and doses. Are you going to get neulasta ?0
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I have no idea! They are setting me up for my echo and to meet with the port surgeon, but not until next Tuesday (took longer than they thought to schedule it all, of course). Not sure if I'll have a meeting with my onc before my first chemo or not - we are trying to just get all the things in motion ASAP since I'm so far behind schedule for treatment. I have been relaying lots of questions to the nurse, though. I probably will make up a list of questions and just drop them off at his office. Either I'll get answers via the nurse or they'll squeeze me in for an appt with the doc. As long as I get answers and see him right before starting chemo, I'm cool with that.
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dance - the echo is a breeze!0
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Dance - before I had my first tx in 2006 I went with my husband and sister to what my onc called chemo class - basically a 2 hour crash course in chemo with the nurse practitioner. Got all my questions answered there. You should call your onc's office and ask if they offer that service. If they don't perhaps a counselor at your local American Cancer Society office could help. I also see my onc in person prior to every treatment where he runs labs on my blood and we talk about how I'm doing etc. Hopefully that will be true with yours as well. But sometimes you do have to be proactive to get your answers and you shouldn't hesitate to ask away....
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Having my last (post-Herceptin) echo tomorrow. It will be much easier than my last, which was done with fully filled tissue expanders - the poor tech could not work around them! The new girls are squishy so it should be much better! I am curious about my EF - there was a question about how accurate my second one was when they did my third. My EF never dropped below the mid-50's but I wonder what they will say tomorrow.
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Specialk...I might just take you up on that offer and have the nurse call you lol.
Lago, thanks for sharing your port story.
I'm just repulsed by how some of the doctors, nurses, and other staff answer questions and interact with cancer patients. I don't know if I can explain this in a way that will make sense, but I remember being a little girl visiting family in a nursing home and seeing how the nurses would talk to patients with fake smiles and it seemed to me that they really did not care about what they had to say, they would just yes them and then wink to the families. I just remember thinking at 10 years old, how awful it was that they were pretending to care but were not really listening. At times since my diagnosis I have felt like one of those patients.
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brax - I am quite willing to give her a piece of my mind regarding her attitude! She needs a reminder of who she works for - YOU! I had the best onc nurses, so I was spoiled. I think we all deserve to be treated with kindness, respect and accomodation.
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My onc nurse was awesome too but she did have days when she was so busy that at times she seemed short. They are so overworked. But if I ever had a problem she was so wanting to help resolve it. I actually think I frustrated her a little because I kept getting the stuff they don't have meds for.
brax some people find the port annoying. It did take a while before I didn't notice it but not really painful. BTW I still have mine in for another 1.5 years.
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Good luck SK on last Echo!
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I am really struggling this week, don't know if it is mental or physical or both....Had #5/6 of TCH on Friday....have had horrible GI issues and I just feel like hell today....have missed several days at work and would quite honestly prefer to be in bed today...thank goodness there is just one more treatment, can't wait to be on the upswing!
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Vanlex,
#5 was my rough one. I ended up with food poisoning on top of all the chemo stuff. Just 1 more to go for you!!! YEAH!!!
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