Taxotere, Carboplatin and Herceptin
Comments
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Carolyn:I had mouth sores, particularly with my first treatment. You want to get on top of that. I don't want to scare you, but if you continue to have untreated, open sores, that can invite yeast or bacteria to propagate, resulting in infection. So tell the doctor TODAY. They'll give you something. What they gave me was a mouthwash with antibacterial stuff, antifungal stuff, benzocaine (for the pain), and cortisone (anti-inflammatory). I swished and spat 4 times a day, and it worked like a charm within the first 24 hours. As to the diarrhea: I know we had this debate about the pros and cons of probiotics. But ESPECIALLY IF YOU'VE BEEN ON ANTIBIOTICS, you should take probiotics, with the approval of your doctor. You've been effectively wiping out all the friendly bacteria in your gut that support your immune system and regular elimination. Somehow, that intestinal flora needs to be reestablished. That should take care of the diarrhea. As for your genital area, it is made of mucus membranes, like your nose and mouth. So you probably have some of what's going on in your mouth going on in the genital area. You didn't say if the moles are internal or external, but I would definitely ask the doctor if there's something you should put on these.I hope some of this stuff helps. You'll be in my prayers. By the way, after my first treatment, the only thing I could put on my lips to sooth them was Burt's Bees handcream.0
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July 22/08 Hi I am new to this group, Hope I am posting in the right spot lol. I just received my first chemo treatment, TCH, on July 16th. I have had a few side affects but not to bad was more scared than anything. I think the anxiety was the worst. I was wondering if anyone has experienced ear aches, it started about two days ago and seems to be getting worse, a constant ache. Also wondering if anyone had different pathology reports my first report said er/pr- and her2 positive they are redoing my reports, confused and worried about this??? Anyone else had similiar problems. Thanks Heather
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Heather, about the only thing I have not had is an earache. You might have a mouth sore in that area and it feels like an earache. Are you running a temp? Be sure to keep and eye on your temp and let the doc know about the earache.
As for the symptoms after chemo, I hope you don't have any but they can start 1-5 days after the chemo and you might not have any until the second dose but just be prepared with all this stuff you will need, laxatve or immondium ( have both just in case) mouth wash,etc, There is list someplace here and it has really helped me.
I think I would rather have diarrhea instead of constipation. As for nausea my doc has a bunch of meds for me just in case and also for indigestion. Protonics ( a script) has been my best friend. I am just dreading the next chemo with all the meds at the same time.
. I am hoping your pathology comes up with a correct answer. It is bad enough to know and know the meds but not to know and not sure you will get the right meds is frightening.
hang in the Heather!
Carolyn
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Carolyn, drug stores sell products for those nasty little canker sores. Can't think of the name but there's one that's a gel that numbs the sore and I've used that before with good results. Your doctor may have some of that "miracle mouthwash" stuff they talk about too that would help. I recommend you call your doctor about the moles in particular, that doesn't sound like something that you should let go without a call to the doc.
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Carolyn,
I too had absolutely horrendous mouth sores - canker sores that were sometimes larger than 0.5 inches diameter, under my tongue, at the base of my teeth - caused me to have swollen glands and an ear-ache and toothpain. Couldn't eat either - lost 4 pounds in a week. Tried 4 different prescription mouthwashes. Finally decided to try "canker cover" - these little discs you put right on the sore; they stick on in 20 seconds and stay on till they dissolve. They first turn into a gell "cover" to protect and sooth the sore. When they dissolve, no more sore (except one very large one that I had to do 2 days in a row). Check them out on their website http://www.cankercover.com/
Also, I found rinsing my mouth with warm water and baking soda helpted a tiny bit.
The diarrhea may be related to the antibiotics. I just got on antibiotics on Saturday and started having mild diarrhea today. I'd call your doctor asap if I were you about the moles - you don't want to bleed if you cells and platelets are low.
Good luck and hang in there - once the mouth sores start healing, they seem to heal pretty fast.
Heatherr - I am er/pr-, her2+++. Did you have other reports that indicated differently? I am on TC (4 cycles) and Herceptin once every three weeks for a year.
Gina_M.
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Hi Everyone, I ended up going to the Dr. about my earaches and he put me on antiobiotics due to a throat infection. I cannot believe I am only day 6 into my treatment and already need antiobiotics.
Gina , you are also er/pr- her2 I talked with my regular Dr. today, and he is also confused he said either you are her2 positive or not. I see my oncologist on the 7th of August maybe he will know more by then. From day one this has been a nightmare. Right from surgery bilateral mastectomy; to waiting for my pathology report for over a month. Good old Saskatchewan pathologists slow!!!!!!!!!!!! I sometimes don't know how much more stress I can take. Sorry to be such a complainer, I gain courage and strength from reading everyones imput and am glad for computers I realize I am not alone in this battle. Thanks Heather
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heatherr-
Er/pr and Her2 are not related. Er/pr are estrogen and progesterin receptors. If you are positive for these, it means that the tumour is "fed" by estrogen and progesterin. In that case, they have certain drugs available that "block" these receptors on cells (tamoxifin for pre-menopausal women and another one like Arimidex or Aromasin for post-menopausal women). These drugs have no effect on tumours that are er/pr negative.
Her2 is a growth factor that seems to accelerate the growth of tumours that have it. About 25% of breast cancers are Her2 positive. While the cancers tend to be more aggressive, there is a specific monomclonal antibody that is directed against the growth factor. It is called Herceptin and Her 2 + tumours can be treated with Herceptin.
So, you can be er/pr+ and Her2 -
Er/pr - and Her 2 +
Er/pr -, Her 2 - (called triple negatives)
or
Er/pr +, Her2 +
There are gradations in positivity for Er/pr (in fact, one could be positive and one negative even); and there are usually a few levels of Her2 positivity. I am ER=0, PR=0 and Her2 +++ (highest level here).
Gina-M.
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Carolyn,
I wish I did have some advice for you and am very glad you are going to the doctor tomorrow. I hope you can get these things addressed quickly. I am sorry for your troubles and I will keep you in my prayers.
Someone else will probably have some tips for you.Check out the thread in the Starting TCH in July.
(((((_)))))))Bethany
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Just another of my "wild gourds" in the stew...We talk about the physical side effects of cancer treatment a lot. Does anyone other than me feel extremely isolated from the majority of humans who DON'T have cancer? Is anyone else out there swinging between depressed and homocidal? Am I the only one who finds "social intercourse" and "small talk", now, a waste of my precious time? Is anyone else sick of that hang-doggie sympathy face that comes at you at church, perhaps in the supermarket or the playground, that wants to give you a hug and tell you if you need help with ANYTHING, JUST CALL? JUST BECAUSE YOU DON'T HAVE ANY HAIR? Man--if I get nothing else out of this experience, it will be how NOT to relate to people who are going through cancer treatments! I find the only people I can have in my presence right now for more than 5 minutes are those who (1) don't feel sorry for me and (2) will relate to me on normal topics not related to my treatments...like they'll ask how I'm feeling and then frickin' MOVE ON! Have I struck a chord in anybody? Do you feel like blowing an O ring over what's going on in your own brain and how people treat you? Dish it up. I wanna hear about it. ...or maybe I'm the only one, and then never mind.
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Hi TCH group! I've been back in the Midwest visiting family and disconnected from cyber space, so I've been catching up.
Shel - I usually go out with a wig, so I don't get much of the random hang-doggie. As a matter of fact, I was wearing my really short one yesterday, and my neighbor started yelling what a cute haircut! I told her my situation and she was shocked, and she sees me pretty frequently. (She's actually a former high school student of mine - talk about feeling OLD.)
But I did get some of this at work. I'm a department chair, and a few of the others (mostly younger men) treated me very differently. . . like "Oh, Sue, you have enough on your plate, don't worry about this." No, damnit, it's my job to worry about that and do something about it, so don't treat me like I've suddenly become incapable of handling my responsibilities.
I guess people like that are better than the idiot colleague who told me she was amazed by how well I seemed to be doing - after she heard about my diagnosis, she didn't think I had long to live. WTF????? It's 2008 - you don't know that people with breast cancer can continue to function?
Around the house, my family has been great - they treat me pretty normally. With others, I just try to move the conversation along to anything else - turn it back to them. I'm lucky in that my best friend was diagnosed last summer, so I have someone who totally gets it, and our conversations DO tend to be bc-focused, but with no sympathy. We work together, and share a lot of notes about some of the idiotic responses. But overall, most people are great.
Watch out for the homocidal tendencies - I'm not sure how well the prison system deals with bc treatment.
On a positive note - I finished TCH yesterday! Gotta go to Build a Boob Workshop right now for 50 cc's, then get my Neulasta shot, then nothing until my first Herceptin infusion Aug. 11. YAY! I'm able to schedule them for after school, so hopefully this next school year will only be disrupted by reconstruction.
Everybody have a great day. Brenda, I hope you're recovering well, Aly, I hope the cold is better. Hope the nasty mouth sores clear up and all the other SE's are minimal.
Off to get a few needle jabs - "Little sting. . . " Words we all know so well.
Sue
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Shel, you're definitely not the only one. I am sooooo depressed these days it's not even funny. Everybody keeps telling me to try to remember that I'm not alone but I feel like I'm standing in a big field with acres of nothingness all around me. I'm scared and nobody can comfort me even though they try. People always seem to have the need to relay their negative stories when they hear you have breast cancer. Like about the relative who died from it or something similarly discouraging. When that stuff happens, I get scared that maybe *I'll* die and I don't want to die. I wish that people would keep the negative stuff to themselves and I wish people in stores wouldn't stare. Those are the things that get to me and tend to keep me in this pit I can't crawl out of right now. How do you get out of it when it sucks you down?
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Shel - So far I haven't been overwhelmed by crazy people making me feel worse. Maybe I just don't notice them. I was trying to remember back to before my bc was diagnosed and how I was around people with bc. Funny, I can't remember, but I'm sure it will likley be different in the future.
Most people I know are, I think, doing the best they can, given where they're coming from. People try to imagine what would make you feel better and fumble through their own emotions (especially fear) and try to get that across. I'm not sure why people seem to feel the need to tell us about someone they know who died from it, but I'm pretty sure they don't even realize how it sounds to us.
Maybe I'm not as brave as many of you, boldly going out commando style with no wig, etc., but I try to keep things as normal as possible. My clients don't know about my chemo (or my bc for that matter), I wear a wig anytime I go out and so far have no other visible proof that I am undergoing chemo. On really bad days I hole up and stay home, don't answer the phone (unless it's one of a few people and I have call display) and try to take it one day at a time.
Because I haven't told many people (including neighbors) people generally do not know and therefore don't really treat me differently. Any of the social events I've gone to, people ask me how I'm doing, but since they don't know, I can't think they are feeling sorry for me or anything.
Gina_M.
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Shel,
I am definitely there with you- I get so tired of trying to have the happy face because I dont feel like most people really want to know- they like the fact that I am doing OK and coping. I went to church with hubby on Sunday (usually I am the church pianist at a different church) and actually threatened to answer the comment- OH you look great with "Thanks--- for someone who has been mutilated and poisoned for the last 5 months, Im sure I do look pretty good" I decided not to say that- I think dh was very glad of it but I have commented to several people who say "We only have one more chemo" that they dont have any, I still have one!
Kristy
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Thanks, ladies, for having socioemotional hour with me. It's funny--as soon as I can peel my body off the bed and off the toilet, my emotions go nuts. I guess that's why I would rather get on here than talk to people in real time--right now, the people in "real time" are not REAL. By the way, Sue...I love Build-a-Boob! That's great. Aly--the only way I can get out of it, when I do get out of it, is by pushing my limits of physical activity until I'm exhausted, which makes me more mellow. Today I rode my bike hard for an hour and a half, and I feel a little better. But I've also come to the conclusion that if Jesus was driven into the wilderness for 40 days and nights, I have the right to be in my own self-imposed "wilderness" devoid of people and places I force myself to commune with by obligation and toxic atmospheres filled with people who don't "get it" and as a result, treat me weird. I love Kristy's comment to people who say you only have one more left...that's like the three years in which I had five miscarriages and people telling me I can always get pregnant again. It would be so much better to say NOTHING! So when people ask how I am, I give them an honest response, most of the time without deleting expletives. Maybe I'll have fewer people ask who don't really care.Fortunately, I haven't had many people telling me their horror stories. But I do have random people telling me about Uncle Ferd and Aunt Tillie and how they had cancer 50 years ago and are still cutting a mean foxtrot down at the VFW on Saturday night. I just want to smile sweetly, put a hand on their shoulder, and say, "You know, they just discovered that breast cancer is contagious. It's spread by skin contact." And exit. Stage right.0
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Has anyone experienced weight gain that seems like water retention? I'm reading that that happens with Taxotere. Didn't really happen until after treatment #3. The dang doctor didn't warn me of this and it wasn't in the self-care-what-to-expect handout. I thought it was just going to be after the infusion, but it seems to be lingering this time. The doctor prescribes Lasix, but I don't want to be on Lasix for the rest of my life or anything. Sheesh. But I don't want to turn into a flippin water balloon either. Does anyone actually know anything about this? You know, some of my piss-offedness could be edema in my brain kinda like PMS, which I fortunately never got when I was a "vital and fertile woman". But now that I'm a withered up old crone that looks like last year's model android, I'm blessed with PMS? Now THAT'S justice in the universe!
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Shel I love your sense of humor. Finally start my chemo the 29th every 3 weeks. I probably will gain weight back I lost. I knew things might not taste the same on chemo so its been like I have been on an eating frenzy with my favorite things. Not the right thing to do.
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Thanks everyone for your encouragement. I got a bunch of new scripts yesterday and it seems as though the bleeding on my bottom is from the same thing I have in my mouth. they just happen to be over the moles. I am to take sits baths several times a day and put the ointment on after that. It is helping because I can go pee now without being afraid it will hurt. I am still having to wear light days pantie liners and I have not had a period since 1979. I am glad it was not the moles bleeding. My mouth is slowly improving with anti viral meds and anti fungal meds. they also gave me 3 bottles of mouthwash called " Prevention" the only place we can find it is in Walgreens. It is made in IL. by a lab. It burns like crazy but once it stops burning it does make my mouth feel better. I had been using Biotene toothpaste and the salt, soda solution they suggested and it does relieve the pain but my mouth would stick together at night. It did some last night but it is so much better in just a few treatments of mouthwash.
I am sorry so many feel depressed. I am not really depressed except the fact I am not working. I would have liked to keep working but I can't right now and also the more chemo and Herception I take the more chance I have of catching something. A bank and that money is really nasty. Even when I would use Purell I was afraid someone had something. this way I stay home on FMLA and get my laundry done plus my grandsons done. I know they appreciate me. My church friends have been really understanding and I love to teach my class. I am afraid after my next chemo which is a long one I may get sick but I have gotten someone to teach in my place. We have had a lot of people in our church who have had cancer or have cancer. One friend was give up on here in Oklahoma City so he went to Houston to MD Anderson and he is doing good. He is still recovering his strength though.
I am like all of you. Why is it people say I knew someone with cancer and oh yeah I guess they didn't do so good but why can't they say I have know several people that did good on the cancer treatment. If you can't say anything nice don't say anything at all! My brother told me how to handle my sister who is an expert on everything.
I am glad I have this website to come to since I would not be able to go to any of the outside support groups.Thanks everyone for your support
Carolyn
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Carolyn;I am STOKED that you're doing better and have found some answers that work. I told you that your bottom was doing the same as your mouth, and it looks like it's true!You know, back on this social thing, what we're talking about is what sociologists term a "stigma". So when people see me and my funky head, they don't think, "Here comes Shelby. She looks cute today. I'm gonna ask her if she's finished chapter 5 yet. I wonder where she got that bitchin' top." NOOOO! They think "CAAAAAANCERRRRR! EUUUWWWWW!" And for lack of anything better to say, they ask me "How are you feeeeeling?" It's very similar to ...I can't remember which Austin Powers movie it was where one of the agents had a ridiculously bodacious mole on his face, and every time Austin talked to him, all he could think is "MOLE". Remember that?Illness is a stigma. Race, obesity, facial disfigurement, and disability are also stigmatizing. If nothing else, I'm gonna come out of this with a sensitivity toward not stigmatizing and marginalizing others that I've never had before.Speaking of stigma, did anyone see "Shear Genius" last night on Bravo...right after "Project Runway"? It's a haircutting competition show. Anyway, last night's challenge involved the stylists cutting cute wigs for women with alopecia. Some of these lovely ladies hadn't had ANY HAIR for 11-12 years! Wow! I think that's my ultimate nightmare--that the hair won't come back. I can giggle about being a circus freak for a season...since I do some theatrical costuming and love stuff like that. But once it becomes you forever, you REALLY have to call it your own. Like adapting to life without a digit or a limb. Like these ladies. It was thought-provoking for me.Didn't mean to write a column. Just had a head-ful this morning. (Might be empty on the outside, but it's not empty on the inside! That might work on a hat or a tee shirt!)0
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I understand what you mean. My neighbor across the street ( who is a little different anyway and you just have to get to know her to know she means well) just called me to ask what was the matter at my house. she knew I have breast cancer and she did too but she only had radiation so she has not gone through chemo. Maybe because of her age or her cancer was not aggressive. anyway I told her I had mouth sores ad I just don't go anywhere right now. I can imagine what I look like to others. She said okay, let me know if I can do anything for you. I do think she means it but I would be hard pressed to ask her to help me. Most of my friends email me to check on me. I have not lost my hair yet but that will be next week. I go for the works and I am sure right after that it will come out. Oh yeah she asked me if I knew my hair would come out! I just told her polietly I knew it would and maybe it will grow back fast.
I feel if I can get over these sores I can lose my hair. I would rather have no hair as these mouth sores. I am ready to eat something good before I don't feel like eating again. The dexamethasone will make sure I have no taste left. I am looking forward to taking it because it makes my arthritis feel a little better but that is the only reason.
I lost my hair when I was a child and it was just in the back so I could hide it a little but my eyelashes fell out too. I donated my hair a while back to Locks of Love. I know a lot of people do not like them but I followed all the instructuons and hopefully they got some use out of it. Even if they had to sell it for skull caps I don't care. It is a lot of work growing hair out and being careful not to do any damage to it. I am getting too gray now but who knows what color I might have when my hair comes back in.
I remember one bank I worked at and a woman who apparently had been on chemo was coming in and one older lady I worked with made the statement she should not be allowed out looking like that. One of the other co workers got on to her and said you can see she is sick. After this older lady retired I saw her at a local store and it looked like her face was fake. I guess she had some kind of plastic surgery but her face looked plastic. I figure after her statement she would end up with lung cancer but I guess she didn't. She smoked nonstop. People can be so stupid. Most of my customers are very concerned about me and they say everyone misses me. It is good to hear.
Caroly
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Thank you Gina_M for the info on canker cover. It really works great !
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My mouth is getting better too! I am so thankful! I am hoping I can eat something before I have to start taking the steroids that make everything taste weird.
I hope everyone is doing okay since there are not many posting here.I know this is no fun and I do have some problems with my eyesight so it is hard to see what I have typed at times. Please bare with me.
Carolyn
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Good morning,
So for those of you who have buzzed your hair off, did it help with the discomfort of the tender scalp? I'm hanging in there with the shedding....... but today wondering if I should just go for it. It's coming out pretty fast now anyway.......Mainly I just really tired of my hair hurting.....maybe part of my headache issue......
My hair is currently only about 3/4" long b/c I cut it all off a month ago.....should I just cut it shorter with scissors?.....leave it alone ang the pain will stop at some point.....have my husband shear it off?......go back to the wig place? .....or does anyone still have their original length and scalp pain....just don't know what to do....any advice?
So glad the mouth problems have been cleared up --- this discussion board has helped so many of us with tips and encouragement. It's just great. x0x b
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Dear Brenda,
You are in my prayers. Your spirit is shining through. It's inspiring to read your words knowing how very uncomfortable you must be. Trust in the Lord with all your heart and lean not on your own understanding. Peace and Love to you, Bethany
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Bethany;I would vote for having your husband buzz it off with clippers (no attachements). And then when you're used to that, have him RAZOR it off so it feels smooth. I just did that a couple days ago, and it feels so good. It's going to be weird until you get through treatments anyway. I think I'll keep a razor shave until after the two-week kill from my last treatment.Carolyn;Glad your mouth is clearing up. I'm post tx3 now, and it seems that the mouth side effects have been milder each time. I haven't even had to use my mouthwash this time! And I've had no blistering, just tenderness. But now I'm on daily Lasix for leg edema. I guess it's a trade-off. Even though I'm a fitness freak, my legs feel like they've been encased in cement and thrown into Lake Michigan by Al Capone! Just one more thing to jump up and down and clap my hands about when people ask, "How's your summer?"0
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Hello camp buddies. A bit stronger today than yesterday so I think I may be on the upswing. Slow process for sure. Lots of pain. I am scheduled to go back on chemo August 5th. I too got the blisters, mostly my poor tongue feels like I burnt it with hot food, it is sooo sore. Not sure about the rest cause it could have been from surgery, but I know the mouth blisters were totally from the chemo cocktail. Thank each of you for praying for me. I do believe that is the only thing that has kept me going, and my strong faith. I will come back in here in a while longer as I get better, but wanted to pop in for a minute to let you all know I am doing better...hugs to all....brenda
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Brenda: So glad to hear you're doing better and will soon be up to going back to Camp Chemo! The mouth (and bottom!) blisters sound awful - glad you guys have some good advice for dealing with them. Yuk!!!
#6 took a toll - my hemoglobin was really low, all the nurses recommended a transfusion, but I figure my body can build itself back up on its own now. So . . . I'm just dealing with the exhaustion. My son's coming home from camp today, and it's my goal to get clean sheets on his bed and run the vacuum in his room - slow and steady.
Hugs, everybody - Sue
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Just don't overdo it Sue. I am like you I want to keep things done house wise as long as I can. My oldest grandson will be going back to college soon, too soon. I want to stay strong so he does not feel bad because grandma is sick.
I am hoping the best for you Brenda. I know you can do it with God as your strength.I have not cut my hair yet but it does itch a little and feels a little thinner but I think it will be after Wed. before I have it coming out.
I went to the bank where I work to get some birthday money for my son in law and my police friend came up to talk to me. I was telling him I had mouth sores. He showed me his mouth and I swear he had one bigger than I did. He only had one but it looked so painful. I am so glad I am getting better but would like to eat something but my mouth is still too sore. I am cooking steaks fr my grandson and husband tonight. I will drink Boost! yum yum.
Carolyn
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Ready for Comic Con! How do I look as Aang the Last Airbender?
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Has anyone experienced muscle aches while on this regimen. I've only had one treatment so far and my muscles, especially my lower back are aching. Every ache and pain makes me think that it's spread to my bones.
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Michele: Are you getting a Neulasta shot? People report aches and pains from that. I had severe muscle aches starting after my fourth treatment (I didn't get a neulasta shot). The onc nurses suggested taking Claritin to help with the aches. It didn't work for me. The NP offered to give me a prescrip for vicodin but I declined that and just whined for the next eight weeks. The aches did disappear two - three weeks after my last treatment.
Talk to your onc and see what they recommend. This is a common side effect of Taxotere.
Terri.
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