Taxotere, Carboplatin and Herceptin
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gramma carolyn, I also meant to tell you how glad I am that you still post. I've been reading this thread from the beginning for the last several weeks (I'm addicted!) and you are such a helpful and inspiring person. I'm so glad you're still around giving us newbies advice and encouragement. I'm only up to February of 2009 in my reading right now and I plan to continue right up to the present. So, so helpful!0
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tbyrd... Ears, yes. Mine didn't ache as much as feeling stuffed up, like on an airplane. My left ear was worse than the right and I could barely hear out of it. My onco said it was part of the teary eyes, runny nose SE since all those cavities are connected. It finally cleared up about 4 months post TC.
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Yeah, i got something that starts with a z...its in the bedroom and i dont want to get up to go get it..lol It helped so much. My problem now is i have no appitite and am feeling a lil dizzy right now. My daughter is making me some soup and i am hoping i can get that down.
I feel comfortable with my dr, but then i have wondered if i should go somewhere else. It seems too overwelming to switch drs.
Tonya
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nine_rugrats - I'm thinking it's zofran you have. I take it also and it works very well for me, so hopefully it works well for you also.
tbyrd - Good for you for attending the Look Good Feel Better seminar! I went to it also and it was very helpful. Last time I saw my Onc she said you wouldn't be able to tell I was on chemo if you didn't know. That was very encouraging. I get a slight earache also, but more on the right side.
swampy - thanks for posting the cause of the earaches! It's so good to know.
Well, tomorrow I go and see my Onc and will have round #5 on Thursday. After that, it'll be just one more 'hard chemo' left, but the herceptin will continue of course. I haven't heard from my surgeon about the BLM yet, but expect to within a couple of weeks. I am having alot of thigh pain/stiffness. Anyone else experiencing this at all?
Hope everyone is well today.
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IsThisForReal...I forgot to mention on the ear problems. There is a condition known as ototoxicity that basically kills the fine hair cilla of the inner ear much like the hair on the rest of your body. This can cause deafness, but usually not in adults. Deafness is more likely in the case of children.
My ear problem, as I mentioned had more to do with the sinus "chain". Pressure and ears "bubbling" (inner ear fluid) when I'd tilt my head.
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OK LADIES - a little question/crisis here - need your feedback. Sorry in advance that this will be long.
So I finished Herceptin in April. Had my final MUGA last week. Now, I am a big exercise person and am used to working out hard. But the last month or so, i noticed that i was feeling 'off' after my workouts - semi-queasy, just generally unwell. I noticed we would drive home from the gym and i would say "I dont' feel good, I don't want any dinner." Then after an hour or so it would go away. Then I started noticing that toward the end of the workout (and even at times during), I would feel my heart racing and pounding a bit moreso than usual and feel like I couldn't do what I usually did. So I cut back some and took it easy, even stopped some workouts sooner. Didn't want to push it or be unwise. I ven noticed my heart racing a few times after going up a flight of stairs - which never happens (even during chemo).
So I had my final MUGA and was very curious to see what it said. All the other ones, I never even cared but this time I wondered if I would see a decrease b/c of the way I've been feeling. So I called today for my results. My (very uncommunicative) oncologist called me back. I left a msg for the nurse, I wish she had called back. Anyway, he says the MUGA is 51, congratulations, all fine, and good, etc etc. I said wait - my other ones were all 55-56-57. He says this is in the margin of error, it's all fine. Would barely let me talk. I said that I had noticed a bit of a change, heart racing during exercise a bit, feeling different. He says no, a drop of that amount should not be noticeable. I said well maybe it was the heat. He jumped right on that and said yes yes you have self-diagnosed correctly. It must've been the humidity. Exercise, exercise, it is good for you, very important, very important (I swear he is a bit of a mad scientist.) So I finally said very curtly, "I WILL CONTINUE TO EXERCISE but I wanted to be sure everything was safe and ok." And he said yes, it is. And then we hung up.
So I talked to my husband who has seen this change in me. I am NOT a baby or a wuss or someone who reacts to small things. I tend to overlook small things, if anything. I was just getting ready to start w my personal trainer again but wanted to wait for the results of this test bc I was a little afraid to have him push me too hard. So...husband wants me to 'find out' if this decrease in MUGA score is ok, or how I should approach things.
So....how do I do that? Do I research online? Talk to someone else at the onc office? Talk to my general practitioner - I can't imagine he will know much. See a cardiologist? I hate to do that - it doesn't seem warranted and I hate the thought of a whole bunch MORE tests. Just take it easy and see if it gets better? Or push myself? Does THAT make your heart get stronger? I know in general you get stronger by pushing yourself, but I don't know anything about heart issues caused by H and how they resolve.
I am at a loss of where to go with this for info/advice.
PLUS I am seriously thinking of switching to another onc in that practice. I almost did it before, since he has been abrupt and rude to me several times since DX but I decided to wait till I was done with H and just being monitored. I felt really unsettled AFTER talking to him - he didn't answer any of my questions and just really blew me off.
Your thoughts?
(AND THANK YOU ALL FOR BEING THERE!!!!)
Amy0 -
Amy~ I would see a GP and get to a cardiologist. If you notice a difference than there is a difference. The onc. only sees you once in a while so he should listen to you as you live in your body not him. ((hugs)). I am sure it isn't anything but it is better to get it checked out. Have fun at your daughters wedding. It was great seeing you last weekend, sorry we were at different ends of the table.
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Amy,You should follow this up the way you are feeling. I don't think your MUGA is why but it could be your blood count as in red blood count. this is the way I feel when my red blood count starts to go down. I would have your Primary Care doc check you over and tell him how the onc treated you. I bet he will want you to have a complete check up with a cardiologist. My onc wanted me to do this since I have weird things with my heart beat and when I did they told me the MUGA does not show valves and all the other things that could be wrong in the heart. Now I am not saying it is your heart but do find out why you are feeling this way. It is your body and you know what is normal. My cardio said 50 to 75 on the MUGA was in the normal range but they found I had 2 valves that were not as tight as they would like to see. I do think if you plan on working out with a trainer you would be ahead to see Primary Care and get his input.I hope it is nothing but then you don't want to feel like this and I don't think it is normal to feel like this. You may have a virus even but best to find out with a doc you trust.
Carolyn
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tbyrd, Thank you for your kind words. I do want to help those that I can. it breaks my heart to see another person have to deal with this and I remember how much this site helped me and all those that went before me and with me. I am happy to say a lot have gotten a lot better and so much so they want to put it all behind then. I understand that too. I read mostly but I just have to check on everyone here. I am still having a few problems but I am working and so far no new cancer. I still have my port because he does not want to take the chance of taking it out right now so I guess he expects a problem. My onc is nice but does not tell me everything he is thinking. He is very smart but I know he is afraid he will scare me. I am glad you are reading all of the posts. So many brave women that was here when I first came on helped me so much. Very wise women too. I always hope they are doing good. did you come across the camp song? It cracked me up. We thought of ourselves as campers like at a summer camp. Unfortunately I did have bad times at summer camp as a counselor to
would not want to do that again either!Carolyn
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Yes, Carolyn, I did see the camp song and loved it. I printed it out so I could read it any time I need a laugh. I wish Shelby was still posting. She really livened things up. But I hope she's got her old life back, with new foobs and all.
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Hi everyone,
I had my last Herceptin on Monday and am getting my port out today. I'm excited!
Becky
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EngTchr Becky, my husband just reminded me this morning that my plastic surgeon said he would take my port out when he does my reconstruction.. replacing my expander and putting in the good implants on both sides. But that will be several months after I finish Herceptin so I figure maybe early fall of 2011 since I just had my first TCH on June 3. Sounds like forever, doesn't it?
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This is really kicking my butt. I had my tx friday and still feel awful. I am going up today for fluids and some nausea meds cause i still cant eat or drink with out gagging. How long should i feel bad? Last time i handled the chemo so well, i wasnt sick at all, just a lil tired. Now its all i can do to go from my bed to the couch.
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Nine_rugrats... I know everyone is different, but what you are experiencing is pretty normal. Most gals are in pretty good shape 2 days after a TX, but the side effects kick in about day three and last, in some part through days 14-15. I always took me at least 2 weeks after TX to return to some form of "normal". Don't wait to take your nausea meds. Start taking them the day before or the day of your TX and continue for 5 or 6 days regardless of how you feel. The trick is to stay ahead of SE's and not try to play catch up once they've started.
The toxic chemicals are cumulative and build up in your body so expect SE's to last longer with each TX and become progressivly stronger. By TX 6 all I could do was look forward to FINALLY climbing out of the chemo hole. I was completely wrung out.
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swampy that's what I've been thinking would happen - the cumulative effect with each one being a little harder. I know I've been lucky so far and it just can't be this relatively easy.0
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Hello ladies,
Well I read this board often and find alot of good info but for some reason, don't seem to post very much. I am having some issues and am hoping for some guidance or reassurance. I finished my last TCH on May 13th, had 2 weeks of Herceptin and then last Thursday had my first large dose of Herceptin. I was doing okay for the first few days but now seem to be having some strange feelings going on. I feel a slight heaviness in my chest(between my breasts) and at times I feel an achiness in the upper part of my chest,breasts and armpit area. I am not sure if this is the Herceptin making its way to the cells, if it is the cancer that I had hoped had left my body is in fact growing, or if it is just anxiety, It is not a constant feeling and when I am busy I am not aware of the feeling but when I have a few minutes to myself I am very aware of it. No trouble breathing, no sharp pains in my arms or chest but given Herceptin's heart issue I am not at ease. Has anyone else experienced any types of physical feelings or side effects from the large dose of Herceptin? I didn't notice any of this when I was on weekly H. Also the past day I have this ache/pain in my right wrist and it almost feels as if my veins in my wrist are hurting which I know doesn't sound very logical but...
I had an MRI done a few weeks ago and nothing new showed up but my initial lump was still present and actually is larger now than at my first MRI in Jan. My onc and surgeon both feel this may be b/c there is still scar tissue present, that there are dead cancer cells, there may be some ductal carcinoma, and there may still be active cancer cells within the lump. I was told they would not know for sure what the lump was comprised of until my bi-lat mx in July so needless to say, after hearing that there may still be cancer in me after 6 rounds of chemo I am very anxious and freaked out. I am convinced that even though I am getting Herceptin to stop any remaining cancer cells from growing, that they are still doing so.
I could certainly use some words of encouragement or would love to hear from any of you who have experienced anything similar. Thanks
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IsThisForReal , I'm pretty much where you are (round 5 last week) and just wanted to let you know I have the same thigh pain/stiffness you mentioned. Sometimes it's uncomfortable just walking up stairs. In fact, after the last treatment I'm pretty achy all over. My onc says it's normal. I have my last TC on June 21 and I can't wait to be done! I want my old life back... I guess I've been a little "down" lately because I realize I'm never going to have my life back like it used to be- I was so healthy! I'm just still stunned at how you can go from being active and healthy to having this horrible disease so quickly. Then going through chemo feels like it's going to kill you sometimes. I'm sorry everyone, I'm just "mourning" a little bit... the carefree life we should all be living- instead of being here with all these se's and losing friends. It's so hard. Nine_rugrats, hang in there... you have been given such a huge burden. I hope this protocol will knock this cancer out once and for all. I'm so sorry you're going through this. And Carolyn, thanks for all your advice for us newbies. Something as simple as closing the toilet lid- not for my kids, but my cats. Poor things- they've been on chemo and didn't even know it. Hopefully they'll be okay, silly things. Don't know why they prefer the toilet to their water bowl anyway!
Anyway ladies, I just wish we were all healthy, vibrant woman who weren't worrying about breast cancer, chemo, side-effects, and recurrences. God bless each and every one of you.
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Aw, Lady_Madonna...I am with you. Before this thing happened, I was super fit and active. When I started chemo, I just couldn't exercise. I was totally focused on eating right, being in bed by 10 pm (getting at least 9 hours of sleep every night) and just taking good care of myself. I couldn't wait for the chemo to be over so that I could start exercising again. I went back to Yoga in January, very gradual. Radiation started and I managed to do Yoga through that (surprisingly, minimal SE with the Rads). I finished Rads in March and have been continuing my Yoga. Started up on the Cardio equipment and mixed the weights in there...things were really picking up and then I started Femara in May. I don't know if it's the chemo from 6 mos ago, or the fact I am continuing H weekly, or that the monthly Zometa is up to something, but I swear, these past two weeks have really kicked me down. My joints in my feet/ankles/knees and back are definitely sore and it makes me sick to see what I looked like just a year ago, to now. I swear I have aged 10 years. I was a very young 45 when this started and now at 46, I feel like I look close to 10 years my senior (and feel about 40 years my senior on some days). I don't mean to complain, but it is very depressing to have been someone full of life and activity, and now feeling like each day is a challenge that I shouldn't have to contend with "yet." Cancer took so much away from me. I have worked full time through this whole ordeal...still working out 3-4 times a week...I keep treading along, and to those around me, I show a happy and strong face, but it is difficult to maintain. I told a friend that I felt like I lost a year of my life (maybe more) to this battle, but she reminded me that losing that year hopefully has allowed me to be here many more than I would have had left, had I not done the treatment. I have to keep reminding myself of that
Being single has not helped, either. I cannot wait to be able to start dating again...even with close to three inches of hair, I don't feel "pretty", especially with this eyeborg thing protruding from my chest...very few things I can wear that don't reveal it. It's embarrassing to have to explain it when it pops out for all to see! Oh, I noticed your comments about vitamins and flaxseed. Yes, my Onc discourages anything with soy or flaxseed as they have phytoestrogens and there is differing information out there for us with estrogen sensitive cancer. He told me to take Primrose oil, rathe than flaxseed. So, that's what I do. Also, I found that we should avoid the anti-oxidants starting a day before chemo and hold off on those until about 5 days after chemo...and to completely avoid them during rads due to the antioxidant effect they have on our cells. Bad to have antioxidants roaming around in your bloodstream during that time...no to Vit C, Carotene, Melatonin and Vit E... I think there was one other one, but I cannot recall what it was.Nine_rugrats...I am so sorry you are having a tough time today. I had a couple of pretty rough chemos, too...I seem to recall my 1st, 4th and 6th ones were the worst. I know why the 1st and 4th were bad (at least I "think" I do, lol)...it was because I did not drink tons of water during the infusions. So very important to force the water starting the day before and day of chemo. I think my 6th one was just the cumulative effect. Zofran did nothing for me in my 6th one...they gave me samples of Kytrel that super helped me. It was rough and certainly no fun to not want to eat or drink. I survived on Matzo ball soup with the rough ones ...I always make a joke that I should be Jewish by default now, as I ate so much Matzo ball soup. Seemed the fresh made balls (very delicate) with the organic low sodium chicken broth really helped me out...you use eggs and olive oil to make the balls, and I cannot tell you how soothing they were for me to eat. I saw one poster noting she loved pickels and vinegar...which made me cringe to read as I could have nothing that was super salty or acidic during chemo...I LOVE salt, but during chemo, it burned my mouth and throat...I could taste salt in the slightest of things. Sugar, too...oh, I could not take sugar in any form during chemo. Hang in there...drink lots of gentle caffiene free teas and broths...maybe that will help you, it really helped me. Hugs... you will make this... make sure to get lots of rest, too...super important during this time.
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Youngmomof3-Not sure if this is any help or not. But, I have heaviness and pains in my chest from anxiety. Lord knows, with all the nightmare this cancer journey has been, I feel it now more than ever. I too worry that it is the herceptin and my heart. Because it is right in the general area of my heart. But, I have had my echo tests as required and I have to think that my heart is okay, per those results. I do know that stress can wreak havoc on our systems. I have had weird pains in my hands and feet. I have had all the scans, and they show nothing. So, I have to think for me, a lot of my weird pains are stress/anxiety related. Have you talked with your oncologist about this specific heaviness in your chest? I would call. Also tell about your hand thing. They are probably nothing, but I would call anyway. Simply to relieve your own anxiety. Sorry you are having to worry about this. It sucks to be in that state of wondering "what if". Lord knows we have all been there. Hugs to you.
V
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vmarie...If the strange feeling in your hands and feet is a tingling sensation or your feet feel like you are walking on sand paper, it's called neuropothy. I've had it since TX #3 which was about a year ago and it still hasn't gone away. The fingers are the worst. I love to do jigsaw puzzels and I have so little feeling in my fingertips that I can't feel the edges of a puzzle piece to pick them up. Turning pages is hard, picking a coin up off the counter etc. Do-able, but not the same.0
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Tbyrd - I am also having the earache issue and stomach pains (with lots of gas). Not enough to send me to bed, but aggravating just the same. They recommended Phazyme for me (for stomach issues), I'll let you know if it works!
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vmarie, thanks for your feedback. I do think it is probably stress/anxiety and know I should call the onc anyway but part of me is just dreading another trip to the ER which is what I know he will want me to do. UGH! I will call him tomorrow though and hopefully he will ease my crazy mind. Still have no idea what the painin my forearm could be. hmmm
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Janny99 yea, we are close. Taxol is my last chemo though, except for continuing Herceptin every 3 weeks for rest of the year. Don't know if you saw, but I started with taxotere, carboplatin and herceptin every 3 weeks, but wound up in the hospital with acute renal failure after the second treatment, so Onc said no more carboplatin. He probably would have switched me to cytoxan and taxotere, but I told him I couldn't miss anymore week with SE's with all the time I missed with SE's and with complications from my reconstruction, so that is when we decided on the weekly Taxol. Think I only have 3 to go of 8. Had to miss one week due to low counts, but things not going too bad. Good luck to you! Keep us informed with how you are doing...
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A lot of challenging journeys going on here. Stay strong, all-- you will get through it.
1, 5 and 6 were the worst for me. Turning the corner now after #6 and am hopeful for good times ahead, even with Herceptin/Avastin and radiation.
Amy, I'd say go for exercise length, not pushing yourself hard-- maybe you should walk instead of hard gym workouts, or just ride the bike longer and don't push the heart rate. And yes, why mess with it-- see a cardiologist. None of us wants more tests, but those are generally pretty easy tests, I believe, and you'll feel better knowing if there's something or nothing going on.
I've been walking 3-4 miles at a stretch through chemo, except for about a week when the problems were the worst (stretched to 2 weeks this last round), and I've kept up pilates. I'm pretty strong and athletic. But I was stunned when I returned to the gym on Saturday and got on the trusty elliptical trainer, which I can usually do pretty hard for 30 minutes at level 7, no problem. I lasted 5 minutes.... was just kind of weak, didn't have it in me. I guess that's to be expected. Bit by bit.
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I feel so for all of you ladies. I have been there done that and it sucks. I go this morning to have a blood test again to see if my red blood stayed anywhere near a 10. I feel a little better but still I am weak and my heart pounds with exercise or stress. My heart function was okay so I think it could be in my mine but when my red blood count is low I feel like I have walked a marathon just going up a slight incline. One thing I can say for certain is everyone is different in how they react to this posion and every doctor treats this stuff different. Just try to hang in there and one thing I did have to watch was make sure my bowels were moving before the TC. I had a bad 4th treatment because of that. I thought I would die. I had problems with my stomach from the first tx and it continued until I finished H but I have always had a sensitive stomach.
I think about each one of you every day and hope you will get stronger. It took me a while after I went back to work to get my head on straight and have a little more strength. Now all the girls treat me like I am an old woman they let out of a Nursing Home to work there. I was a supervisor and that went away and it does hurt my feelings they all think of me that way. Even my boss who worked with me and counted on me to help him out is now acting like he never knew I could do anything. It will get better I am sure!
I am so happy for those getting the ports out and finishing. I will be keeping my port for a while I guess. I have some lumps in my breast but they are not cancer because we had a biopsy done. They are caused from the rad on fatty tissue they told me. As for pains and aches, I had that before cancer and it really has not changed much after but I do have a strange sensation on my left arm like a bug crawling and I reach to slap it or get it off and it is nothing just my skin crawling.
I hope everyone has a good day. You can do this just hang in there and things will look brighter as time goes.
Carolyn
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Thanks for all the advice. Yesterday i went in and got fluids and some meds and told my dr we have to come up with something. We talked for a while and he gave me some new meds. I was really dehydrated and the fluids helped. I feel like a new person today! I cant believe it was so bad. He also gave me something to increase my appitite...I said i cant believe i am asking for that.
I am hoping to have a couple weeks of feeling good now before doing it again. He said it may not be so bad next time or it can. Thanks for that...lol.
- That carbo is some mean stuff...i just hope it is being that mean to the cancer!! Cause then it will be worth it. How many tx are you guys having? I will be having 6. The first time i only did 4 tx.
- Hope you guys are having a good day.....
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Hey nine_rugrats! I'm so glad you're feeling better today! I'm up for six TCH, I've completed 5, and I just wanted you to know that I think the first was the worst. It's like my body adjusted after it got hit with that first one. I mean, I get fatigued and I don't have much appetite but I had almost every side effect the first time.
You should start feeling better from now on. Just in time to enjoy your weekend!
(((Hugs)))
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Hi Girls...
Sorry, I haven't been on the boards as much lately....just living my life as much as I can!
I posted this on my Facebook page also. This is an online newspaper article about my nephew and his cancer.
http://www.ccheadliner.com/articles/2010/06/09/news/education/doc4c0e67390ad63653812208.txt
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amy - i completely get what you are going through regarding the shortness of breath and pounding heart when excercising or exerting yourself. i'm on TCH x 6 and had #4 a couple of weeks ago. after #4 i noticed those symptoms. i am not a workout fanatic but i could take 3 flights of stairs without being very winded and would take the stairs at work every day instead of the elevator without a problem. now? no way. sometimes even just putting a load of laundry in will make my heart pound. yesterday i had my H and the onc noticed that i am anemic and has ordered a blood tranfusion since i am also symptomatic. i also have a lung test scheduled and a muga scan scheduled. anemia can have symptoms like racing heart and shortness of breath and heachaches. i reported my symptoms to my onc. didn't even think about going to my GP. i was thinking that my symptoms were because of the herceptin but i'm really hoping that it's just the anemia because i don't want to have to quit or delay the herceptin.
good luck to you!
~M
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I just hate it when my post disappears!
MelMel10, thanks for the tip on Phazyme. I ran straight to CVS last night and got some after reading your post. It didn't work for me but I hope it does for you. I had a sonogram on an ovarian cyst this morning and my gyno is confident that my stomach problems are from that and not from chemo. Sounds strange since my pains are both high and low on my abdomen but I guess we shall see. She wants to do another sono in three weeks to see if the cyst goes away so I guess I'm stuck with this for at least that long. I asked about my ear aches and she said if they get bad or if I start to run a fever then I need to call and in the meantime take Claritin. Believe it or not my onc gave me her cell phone number and told me to call her in the middle of the night if I had to!
I had my blood work today, too, and my onc nurse just called to say my blood counts are almost nonexistent. This is day 8 after my first chemo. So I guess that's why I'm tired. She said no movies or church, etc. until they come back up. I guess that means no Winstar Casino to see Blake Shelton in concert tomorrow night, huh? I didn't even ask because the answer would probably have brought on the waterworks again. I've been so emotional today!
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