Taxotere, Carboplatin and Herceptin
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Well after 5 days of anxiety because of the patches on my lungs (which my radiation oncologist did a piss poor job of explaining to me other than to say it was "inflammation" and they didn't know why it was there), I complained again to my radiation oncology nurse today that I still had pretty bad middle back pain. She went up and had a chat with my medical oncologist who told her to send me up. When I got up there, she walked into the exam room with an understanding smile and said "gosh, I see that darn pneumonia is trying to come back huh?" (I had bronchitis at least once before). I said "pneumonia???". She then, quite simply, explained to me that that's what the patches on my lungs are, and after I told her I thought pneumonia was fluid in the lungs she told me that yes, it's the fluid that makes the patches show up on the CAT scan. The associated pain is likely from all the coughing I've been doing over the last six weeks or so. So, because of my stupid radiation onc, I've been in perpetual anxiety attack mode FOR NOTHING!!! I told my husband today that I am no longer referring to him (my rads doc, that is) as "Dr. Cutie Pie". I may just verbally kick his butt when I see him on Monday!!!
Well, at least I can have some peace over the long weekend now, knowing that it's just something simple (I'm on antibiotics yet again) and not anything life threatening. Thank God for that. I think He did some orchestrating today so that I could have some relief from the stress. I'll have a follow-up CAT scan in a month to make sure it's clearing up. I also had acupuncture today for the first time. That was an interesting experience!!
I hope all of you have a wonderful Thanksgiving!!
Aly.
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Kristy:
I think you did the right thing scheduling your surgery around when your kids would be home. You want to be MOM when they're around. Have a truly fun holiday with everyone!
Aly:
I am thankful that you finally got someone to frickin' speak ENGLISH to you. Like HELLO....I think anyone who communicates with people like us needs to know the demons we battle on a daily basis. Like I called my surgeon's office today to find out what I can stone myself out on prior to my MRI. The doc himself, bless his heart, called me back about 6 pm to tell me that he wants me to take a Xanax an hour before the procedure and one right before if I think I need it. He said if he hasn't called me by the next day, to call him. He's the best. But I was believing for this to be all over with before my ski trip, and it's happening! As you said, we can't forget that God is the Master orchestrator! Happy Thanksgiving! We have our futures to be thankful for.
Shelby
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Happy Thanksgiving to all -
I count all of you among my blessing, and appreicate your kindness and support as we are all traveling this journey!!
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Hey Shel, I don't know if you experience any pain during the MRI, like from having to lay face down with a hard metal surface digging into your ribs, but that was always a problem for me. I solved it by taking one Clonazepam and half a Percocet before I went in. The Clonazepam made me relax and the Percocet deadened my pain receptors. Anyway, that worked for me and got me through MRI's #2 and 3 because during #1 I had a full on, gasping for breath panic attack. Those tubes suck!
Happy turkey day and blessings to all of you!
Aly.
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Aly;
Good point. I didn't even think about pain. I was just thinking about being freaked out to the point of needing to wear a diaper during the procedure! I didn't have my mastectomy yet the last time I had one. Hence, I didn't have an expander port sticking out of my ribs. So it might bloody well hurt like a mother this time. Yikes. Well, we might have to reevaluate the pharmacological management of this whole thing.
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Well, they can't lay you down on your expander port, they'll have to do something to work around that to make you comfortable if it's in a place where pressure will be put on it so don't worry about that part. Just make sure you tell them if you're not comfortable or if anything hurts. I worried the last time about laying on my chemo port since it's in an inconvenient place if I'm laying on my stomach, but they allowed me to lay with my head turned to the side instead of face down and that lifted that side of my body just enough to get that out of the way, without compromising the MRI. There are things they can do to help make you more comfortable so just make sure you don't let them get away with leaving you laying there in discomfort, OK?
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Aly, I am so happy you got some one to help you with your questions and some meds for it. I hope you had a good day yesterday.Why is it the Onc docs are nicer than the Rad docs? I have had that experience and apparently the one I got is not the nicest so the nurses in Rad. told me I could change if I wanted to anytime. I guess I will wait and see since this one is the one my surgeon got for me but I think scheduling is going to be a problem. When I asked if it was possible to get morning appointments they were all hateful about it but I am supposed to be going back to work and also my husband has cardio rehab in the mornings at the same hospital. I will have to press the issue I guess! I know a lot of people want mornings too. I see my Onc doc on Dec. 3 and we will see what comes next. My platelets were down to 42 but it was from the blood because every time I get blood they go down a lot and this time I had 3 units. I was up to normal on RBC Wed. at my blood test and have not been that in a long time.I was really tired yesterday though even though my daughter and family did most of it.I guess it was the low platelets.
I typed a long message the other day and I guess I hit a wrong button and lost it so I just closed my computer and laid down. I was too tired to do that again. haha I am wondering about Cupcake. Has anyone heard from her? I hope all is okay.
Someone was asking what to eat or drink that would taste good. Well, everyone is different and I never found anything that I could stand except the week before the next TCH I could taste and eat anything. I am so thankful for those days I had. yesterday I ate like I never ate at Thanksgiving before. I guess because someone else made it and I had not had anything good in a while. I am trying to keep us on my husband's cardio diet which is hard. with chemo I just got down anything I could like Boost or something to drink and called it good and my husband ate frozen dinners when I was sick from chemo. After the first 7 or 8 days I could stand to cook a little. I did think of you that are having chemo yesterday and felt really bad about eating like a pig. Hopefully you will be through with this soon and maybe you did feel like eating something yesterday.
Carolyn
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Hello campers! I've been following your postings without jumping in, but I need some help or assurance.
I had my last 6th and last TCH on October 30 followed by two more Herceptin infusions. I start Herceptin alone next week until July. My stomach and taste buds have recovered, but now EVERY muscle in my body ACHES! I also have swollen ankles and feet. Has anyone else had this experience AFTER finishing TCH? how long did it last? It hurts just to point my toes and stretch my arms out, and my thighs muscles hurt the most ...and I didn't have these aches throughout chemo. My oncodoc says that it's the cumulative effect of the taxotere and I need to be patient. It's already four weeks, are my expectations too high?! Any recommendations? I try to get out and walk, but it's a struggle just getting up out of the chair. I feel like an 85 year old
I went looking for answers on some of the other "after cancer treatment" forums, but I know you gals will sympathize. Thanks! Gail
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Gail, I have had a few times with just Herceptin that I felt like I had the flu and even ran a temp. Did you by any chance recently get a flu shot? Just a thought it may have caused some reactions. I think Shelby had some reactions to Herceptin when she first started it and I don't think she took it with the other stuff but I could be mistaken. Every time I take Herceptin I feel the need to take a nap when I get home and most of the time I can sleep 2 hours but last time just 1 hour. I did not take my temp that time and the time I had such a bad reaction was when I was getting blood so I am not sure if it was all Herceptin or the combo of both. This past time I did feel bad and weak in the legs and so tired but then my platelets were really low so I am not sure what was causing the weakness. It has been a hard month for me so it could be I am just run down. Have you looked up Herceptin under the Search at the top of the page? It may have some things about it. I hope you feel better real soon but if you keep having reactions let them know because if your onc did not think it was normal it is not. I am one that will let stuff go and finally have a really bad effect and then I say something and they get mad I did not say anything sooner.
Carolyn
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Gail, take a look at the very top of this message board in the blue where it has topics. It is the third one, treatments and side effects.click on it and put in Herceptin and it does say you may have those symptoms and what to do about it. they say tell them and they may want to ajust your dose. Let me know if this helps or if you have a problem finding it.
Carolyn
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Dear Gail,
It's a small world -- I was just looking for information on BC.org under side effects -- and through Google -- for why I feel like I'm 85yo -- and then I read your post above. I hurt everywhere -- even to the touch -- my ribs feel bruised -- my muscles are stiff and sore (partly from a fall) but this general pain started at the end of chemo.
I'm wondering if these fibromyalgia symptoms are going to be around for a long time -- till I'm done with Herceptin? --or is b/c of the Taxotere? -- if it will be worse on the Arimidex?, etc., etc.
I am walking, working and feel ok after i get going but it is so hard to get up and down from bed, a chair, from the bathtub. I hope we can figure out what this is.....Aleve doesn't touch the discomfort.
One thing I want to do is get my Thyroid (TSH) re-tested soon to see if it could be that needs to be adjusted. And, if that doesn't seem to be the case, and I still feel this way in a couple of months, I may ask my onc about going to a Rheumatogist. Too "young" and positive to feel this way.
Your fellow acher, Bethany
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Gail;
My favorite thing to say about the phenomenon you're describing is "I'm done with IT, but IT'S not done with ME!" I only had 4 treatments. I didn't get the muscle achiness...except from working out too hard. But I did have the swelling. Taxotere plays havoc with the microtubules in the cells which regulate how much water is retained. For the longest time...maybe 2 months after I finished treatment, I was on Lasix for swelling in my legs. I still take it occasionally, if I've been on my feet too much (like yesterday) and my legs feel heavy and uncomfortable. My onc says give it a good six months for some of these things to totally go away. And like Carolyn, sometimes I feel a little tired like I'm fighting off the flu when I first get Herceptin, but it goes away in about a day. I just take it easy a little bit. I don't have to go to bed like I did with the chemo. I hope all that helps. Now I'm still struggling with the weight gain. I hate it. My husband is convinced it's just muscle I've gained back after a weight loss I had after my surgery. I'm not so sure...
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Gail, I was also going to suggest getting your thyroid checked. I developed achy joints or muscles in my late-40s and thought it was just aging or peri-menapause but a test showed my thyroid was low. When I started getting thyroid hormone the pains went away. It was after that that I found in a google search that it can be a symptom of low thyroid, but I guess it isn't one of the most common or first symptoms so a lot of sites with a short list of sympotms don't mention it.
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Hey Ladies,
This past week I had tx #4 out of 6 of TCH. The doctor took a look at my nails and said I might lose some of them. WHAT?! LIke the hair isn't enough. Anyways, I wanted to know if any of you have lost your nails, was it painfull, did the nail come off all at once of did it chip away?
Thanks,
Angie
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I was wondering about whether loosing nails is painful too.
I did think of one advantage to losing hair the other day when I was beset by sudden nausea that quickly produced results - at least I didn't have to worry about keeping my hair out of the way.
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Bluedasher,
I have not had one regret over losing my hair. I have felt so bad from the chemo that there is no way I could have dealt with all of my hair. Plus I like the way the water in the shower feels against my scalp. But, I am worried about the nails. I work for an eye doctor and my hands are in peoples faces everyday, I just hope they don't look too bad.
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Blue, Angie, and all the ships at sea;
I'm going to weigh in on the nail issue. I thought I had escaped it. I had been taking my proflavanol and had been pampering myself with mani-pedis the whole treatment time, priding myself on my beautiful nails. And then after tx 4, I took my old polish off at home to discover that the white part of my nails was, like, way low like a badly done French manicure. And when I pressed on my large toenails, it was sort of numb. Then one day I noticed that my large toenails were "loose", and I just peeled the whole thing off. No pain, because it had separated from the nail bed. I then clipped the other toenails down to where they had separated. I noticed, too, that my fingernails had separated low, so I clipped them. They look like those of a childhood nailbiter, but they'll grow back. There was no pain. Maybe if they come off, you could get acrylics for awhile? That's about all I can tell you.
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By the way, Gail, I second the motion of checking the thyroid. I don't get the muscle aches. But I'm also on 50 mcg of levothyroxine daily. My thyroid went walkabout a couple years ago. But I still run half marathons and kick butts for a hobby. I'd have it checked. Getting on thyroid when you really need it is like having STP added to your fuel!
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Shelby-Thanks for the info, it doesn't sound as bad as I was thinkinking it would be. I will chalk it up to another chemoventure.
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As for the thyroid thing I had a checkup just before I was diag. with cancer and my thyroid was out of whack but I don't remember if it was low of high. I am supposed to get it checked again this month but haven't. I am going to see if the onc can test for that instead of me having to go to another doc. As for the fibromyalgia I was diag. in 1991 with it and had it long before they gave it a name. I have hurt more since chemo but then I am not getting the shot for it from rheumy. the onc said no because I was taking steroids before TCH and it would be too much. I did take one this morning because I can barely get up and down the stairs and getting up from bed or a chair is really painful. I wish the thyroid would help that and it is worth a try even if I have to go to my PCP.
Bethany I sure hope the fibro sym are short lived for you. I would not wish what I have been through with it for no one. Not one minute of the day am I out of pain. the onc said the cytoxin might help my fibro but I just don't see how. I chose the Carboplatin because I had already started it.
As for the hair I was not too hurt by losing it but now that I feel better I want it back but it is also winter and I am cold. My daughter bought me a stocking cap with my school logo on it and we are having a big game today. I wore it to bed last night and I was so cozy and have wore it to go places today like getting gas and it is sure a lot warmer than the scarfs & hats. I usually wear both when I have to go outside.
My nails did not come off or change at all except 1 toe nail and it turned dark but has not came off yet. My finger nails continued to grow in fact. I thought it would stop that. I am not complaining though. I may not be out of the woods yet though.
Carolyn
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Hi ladies,,,,,,,,,I know I said I wasnt going to post anymore but........I still get emails whenever someone posts here,,,,,and I read them,,,,,,and let me say that I am so proud of those of you who have finished,,,,,,,and proud of the new gals hangin in there. You will be done before you know it. I saw that someone had posted about thyroid problems. Just wondering as my onc had me do the tests for thyroid. I have been feeling bloated, very tired, hair is way thinner than it used to be, back aches, hard time losing weight,,,,,,,,,so looked thyroid problems up on the internet and some of those symptoms appeared. So just wanted to know what symptoms you gals had when diagnosed with that. Any info would be appreciated.
Keep well everyone. Hope you all had a wonderful thanksgiving.
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Thanks for the suggestions about having my thyroid checked. I have labs this week, so the timing is perfect. I asked about Lasix for water retention, but the answer was, we'll see how it goes. I know that my swelling (and weight gain) is partially due to that butn exercise or walking or elevating my feet hasn't helped. My legs feel (and look) like two tree stumps. Yikes, I haven't weighed this much in years being the good WW Lifetimer that I am!
Shel, I am going to adopt your "finished with chemo/not finished with me" line. So true.
Bethany - i was also looking at fibromyalgia as a possible cause, but I'm trying to think positively that this will go away "in a few (whatever)s" I tried aleve this morning, and it hasn't helped. My onc is also looking to put me on arimidex, but if this is one of the side effects, that makes me anxious.
On a different note, I am heading to NJ to be with my 85 yo mother while she undergoes heart surgery this week. Could use your collective prayers and good thoughts for her, and me. 2008 has been an exceptionally difficult year.
Thanks. I knew you would all help. This is definitely my "home" discussion board. hugs, gail
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Dear Gail,
My prayers are with you and your mother. What a rough year you're having..... so glad that 2009 is almost here.
Let's figure out this pain issue -- I'll keep you posted on whatever I find out or what helps.
Wishing you safe travel from VA to NJ.
Bethany
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Gail I hope all goes well with your mom. It seems when it rains it pours.
I have my sixth and final tch tx this Tuesday. It can't come soon enough. I can tell the tx are starting to build up in my system. I am exhausted and I am almost three weeks out from my last tx. I did have a procrit shot last week and to be honest it made me feel worse.?? I am wondering what kind if support system everyone has at home. I really don't have one. I am sooo tired and have been doing pretty well I think, but my boyfriend feels I am "just lazy". I am doing the best I can and cooked an entire Thanksgiving meal, keeping up with a baby and keeping the house under control. I am impressed that I have been able to accomplish these things but he has completely bashed me today. I have wanted to take a nap everyday for the past two weeks but I don't want to hear his complaints. Is anyone else this tired or is it just me? I have handled all of this pretty well with only one or two meltdowns but I fear it is becoming too much for me. I don't complain and I keep a positive attitude but deep down I am just frustrated and to be honest I am pissed that I have to deal with this. I don't dare tell anyone how I am feeling because nobody really wants to deal with my true feelings. Everyone just wants to hear "Ooh I am fine, things are going great, I will get through this, I am feeling okay" so that is what I say. But that is not true. I feel like crap and YES I would love it if someone would make me dinner or let me cry for a few minutes. I would LOVE it if someone would put their arms around me and made me feel safe if only for a minute and YES i do resent my boyfriend for not shaving his head after he offered to so. I couldn't change my mind and it would have been showing some support for me which he has not done. Whew!!!! I think I feel better getting that out. I cannot stop crying and I am not a cryer. I am so frustrated. I am sorry.
I hope all of you are doing well and I hope some of the se of your tx's get better. Thankx for letting me vent.
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Dear Traci,
Reading everyone's story here -- you can see plenty of evidence for how "normal" it is to feel physically and emotionally horrible.
I wish and pray for you to find support. Please reach out to the American Cancer Society if that's feasible -- please find someone who can help you.
Peace, Bethany
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Hi Cindy - Good to see you posting! Hope you get answers you're looking forward about the potential thyroid problems.
Aly: I was so angry to think of you worrying about mets in the lung when you have fricking pneumonia! Like Shelby said, can any of these medical people speak English??? Hope you're feeling better, and so glad to hear there's a simple explanation for your x-ray (even though it took awhile for you to get it.)
Traci: Wish I was there with you to give you a hug and reassure you that you're doing GREAT. No, Traci, it is NOT lazy for you to want to take a nap occasionally, for heaven's sake. And I'm so impressed that you cooked Thanksgiving dinner between TX 5 and 6 - that was the worst time for me - just WALKING to the kitchen was hard, much less actually cooking anything when I got there. Is the baby yours? How old is he/she? You are dealing with so much, and we can't be there to help you out, but come here any time to vent - we're good at listening and sympathizing. I'll be thinking of you on Tuesday and hope #6 goes well.
I had a wonderful long weekend - cooked my "best dinner ever", hiked a couple of times in the beautiful Phoenix weather, and relaxed a lot. Could be hard to face Monday tomorrow!
Sue
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traci!!!!
I am so sorry you are having such a crappy day. It is OK to feel the way you do and you DESERVE some support. Yes, the BF should not knock you down, but maybe HE is having trouble dealing with the whole BC thing too. I cannot imagine going thru this AND taking care of a baby!!
Take all the naps you can, you derserve them and don't let anyone tell you any thing else. You are only about a 7 hour drive from me, do you want to meet half way for a group hug?!!!!
Also, I understand what you say about other people only wanting to hear that your are OK. They don't get it and what they do get scares the bee-geezies out of them.
Hang in there girl, you are on the home stretch!!!!!
Lisa
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Gail;
My prayers will be with you and your mother this week. Make every effort to take care of yourself so that you can nurture and take care of her.
Traci;
Man...I know what you're talking about, being in that space where you don't feel like anyone really understands and you just want to cry. This online conversation can only go so far. I finally started seeing a counselor once a week. I had to PAY someone to really listen to me talk and scream and cry. But it did help. Hopefully, you can find some kind of outlet. Maybe a support group at your hospital? Just so you know, it's really common to feel this way toward the end of treatment. My counselor really chalked it up to post traumatic stress.
Cindy;
It was great hearing from you again. It makes me feel all warm inside to know that you're watching over us:)
Well ladies, my son goes back to Brooklyn tonight, and tomorrow I go back in the tube for an MRI. Then I have to go teach caricature to an art class full of junior high kids with 2 tabs of Xanax on board. I'm just hoping that scan is not "interesting" at all. I've really had enough this year, as have all of you. I'll let you know how it turns out.
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Everyone - thanks for being here and for your prayers for my mom as we head into a difficult week.
Traci - I'm sorry things are so hard right now, but, you've come to the right place if you want to vent, complain, cry, WHATEVER! we've all been there. This is the only group that I trust to really know how I feel or have felt along the way. Who else can understand how you can have dry eyes that are always tearing?? or know about that knot in your stomach that just won't go away, and the leaky head thing going on that isn't a cold. Having been through BC treatment twice, I can tell you that it hurts you more when you pretend that everything is okay. I didn't try to protect everyone around me like I did the first time because that made me implode! Be sure you find someone you can talk to before that happens. Hang in there, we'll be here when you need us.
Is anyone else wishing for 2008 to be over already!!?
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Hi ladies,,,,,,,,,,,,o yeah,,,,,,,,I'll be watching over u all from the sidelines. This was a wonderful place for me to come when I needed help,,,,,,,,,and I am so glad that others have felt the same way. Traci,,,,,,,,,,,,hang in there ok? You will find comfort in coming here to vent and all. Most important,,,,,,,,,,,please take care of yourself as your little one needs you the most. I am sorry that you arent getting much support at home,,,,,but know that all these ladies are wonderful people and here to help ok?
Shel,,,,,,,,,,,,,,I think you were one of the ones that had a thyroid problem. What were your symptoms?
Any help would be muchly appreciated.
Thank you,,,,,,,,,,,,,,,Cindy
Just remember that light at the end of the tunnel gals. It is there, trust me.
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