Taxotere, Carboplatin and Herceptin
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Haven't posted in the past 18 days of either trying desperately to keep my job or being incapacitated - too many posts to comment on individually, but congratulations to all of you with birthdays, births, final TX's and welcome to all of you finding this site just now.
I am sorry but need to vent here today. I am praying that tomorrow will be a good day, but I am having every SE anyone has ever heard of plus some. The ONLY one I am having few problems with is nausea, due probably to having the full monty of Aloxi, Emend and the dexamethasone.
Other than that I am feeling sick as a dog and totally unable to work from day 3 thru 7 following chemo, and feeling mostly sick the first two days too. I won't bore you all with the list of SEs it's ridiculous. I thought that this 2nd Tx would go better after being rested going into it (in contrast to Tx 1) but no such luck. I had my wkly Herceptin today and pretty much broke down in the nurse's room. I couldn't stop crying and just felt so despairing. The worst is severe abdominal pain (i.e. intestines stop working) for which neither high nor low fiber diet seems to work, plus severe back pain which is unlike anything I have ever felt before and comes on day 5 - 7 (I am wondering if it's gas??). I've tried everything the chemo nurses can offer and am getting just sympathy from them at this point.
I have lost so much time at work that I am so afraid I'll lose my job. I am the primary breadwinner since my husband lost his good job 2 years ago and he gets no health insurance from his new career/job (his old career died due to globalization so he had to start from scratch in a new one). My boss and team are getting impatient with me. Before chemo started, I had passed on to them the positive expectations that the onco and nurses had told me "most people have very few SEs and can work full time" and now they are thinking I am a slacker. It sometimes feels like more than I can handle. :-(
Sorry to bring anybody down but I thank you for listening! I feel a bit better already.
Maja - enjoyed your "superhuman bitch rant" about Tx 6 and your DH. When I complained that all my hair was now falling out (this was 10 days ago) my DH made the empathetic comment (with irritation) "well you KNEW that was going to happen!" Thank God for women. I love my husband, but am not as blessed as some of you here in that department.
Lisa1964 - What a gorgeous boy your horse John is! I must have missed the url for your website. Would you post it again please?
BOLD - thank you for the affirmations. I am needing them and trying to soak them up. This chest thing you have has been going on too long! Have you consulted your doc about it? You might have pneumonia!
Denali & Jaimieh - I'm sorry you guys are suffering, but at least it's making me feel like I am not a freak. The onco nurses keep telling me "most people have no problems with this...."
Mason - I am reading your blog and am so touched by your courage. What is the meaning of Mason204?
Gramma23 - You are such a sweet and conscientious person it makes me angry that your co-workers could be so unsupportive of you. Please don't question your ability! It makes me so mad that no one will show you how to do this new scanning thing at work! It is unfair to expect you to be psychic and know how to do something when you haven't been trained, You are a supervisor for good reasons, and it's not for being psychic! Make your coworkers show you how to do the scanning!
Cupcake - you are such an inspiration. I relish all your witty sayings. I will remember "...when you reach forward you need to reach back. Thank you for adopting me!
Ipohgirl - I so enjoy reading your posts. They are full of such vivid images and such a connection to nature. I lived in a high rise years ago and would never have dreamed of keeping animals on my balcony! I am glad your friend is following up on her treatment.
My2Boys - SO sorry to hear of your lymphedema. I trust you will stay on top of it and prevent it from becoming more than an annoyance to you. RE: your question about vitamins. I researched this a bit and generally, the reason oncos discourage more than a normal vitamin plus calcium is that many vitamins are antioxidants which could potentially protect the cancer cells from being killed by the chemo poisons. There was one study with lung cancer that showed significant reductions in the effectiveness of chemo when given in combination with antioxidants. The whole premise of antioxidants is that they prevent damage to cells by free radical molecules that result from aging or toxins - so if you think about it avoidance of what is normally a good thing make sense if you are doing chemo. After chemo, that would seem to be a different story unless you are getting rads (which are also trying to kill cells).
Thanks to all of you for being here. E
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Hey Sheila: Totally sucks that you have to do this again. I HATE CANCER!!!! I had a rash the first TX only. It was Just real red. Like Lisa said a combo of steroids and tax. I used Ice on it and it calmed it a bit. I also used a bit of aquafor on the bad parts. It hard to give advice without looking at you. I will say a prayer that it goes away real quick (That way you do not have to explain it to anyone.)
I am getting better lisa just taking forever. I am going to take some cough meds tonight so my DH can get some sleep. I hate sleeping in the other room. I love to cuddle.He is yummmmmy and warm. (except when he snores)
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Thank you, Bold for your good thoughts and support. I hope that you are finally feeling better. We will see where this goes; the doctors do not seem to be worried about it. It will be really hard to go to work with this and without makeup. This bothers me much more than hair loss. I have to say that the second time around is completely different; you think that you are prepared, but the only constants are the surgeries, chemo, side effects and hair loss. Take care.
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REKoz.....I have been reading here also and have posted a few times, but I just read your biography and see that you and I have a similarity....I had IDC and DCIS in one side as well and I had a bilateral mastectomy too, so I would not have to go through it again later in the other side. I won't decide on reconstruction until all this treatment is done.
Also, does anyone else here have a PICC line in their arm. I want to know if I can get rid of it after my 6th TCH and then when I get the Herceptin for the rest of the year , they can just put it in a regular IV in my arm or hand .
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Ipursuit,you need to go ahead and take Miralax everyday which is only a stool softener and then take a laxative like ducolax once after the tx. The back ache is probably from the Neulasta or whatever white cell shot they are giving you. I could not take Neupogen so I had to take Neulasta and I got back spasms so bad at times. I had diarrhea real bad except tx 4 and I got constipated that time because I did not take the Miralax. I know it is expensive but it is so good to help. I still take it from time to time because even though I have been through with tx since Nov I still take Heceptin and it blocks me up. I am surprised your onc is still letting you work. Mine made me quit but I believe you can get on temp SS disability for a while but of course that is not much. You do have FMLA which is only 12 weeks but you can take it as you need it. It does not have to be all at once. So the days you can't go in then they can't fire you if you fill out that form. Do you have short term disability at work? I didn't but I just took off and left it in God's hands. I was surprised they took me back after 7 months off. The upper management was great about it ,it is the ones that work with me that have not been as patient. I know they had to carry a bigger load though.
I think Cupcake may have had her reattachment surgery for her colon. I have not heard from her.
Congrats on the new baby and I know how you feel. My first was more than 21 years ago and I am still in love with him and the other 2 that came since.
I hope the best for everyone. I wish I could say each tx gets easier but everyone is different. I am happy for those that are almost finished and I will think about all you that are just starting. I did not have any of the breaking out issues, fingernail problems,nosebleeds until after my tx were finished. I am the strange one I guess.
gramma23
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I had the breakout with my first TX and they called in some additional steriods pack that I start the day after chemo. Not sure if it helps but I will keep taking them my face hurt it swelled up so bad and then the acne was enough to make me gag. It was beautiful (NOT).
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Ipursuit:I can not stop thinking about you. Cyber ((((HUG)))))). I really feel for you. The stool softener that gramma23 mention is of the utmost of importance. I remember that it was invaluable advice for me. Also our get through Chemo mantra WATER, WATER, WATER. I wished you had of listed all your side effects so we would all chime in. We have been through allot of them and have some ways to prevent and control some of them. I can not even imagine working full time and having to deal with the home and family too. You need help and it will happen. Look into the temp disability. I think that it is against the law to fire someone that is ill. We need to get this thing figured out. There are even free hone cleaning services that you qualify for. You can do this. I swear. (like a sailor). You can vent all you like any time and as often as you like. But just remember this fight is about you. You need to take care of yourself. Put yourself first for a change. The stakes are high and your prognosis is good. You will fight and win. I have to remind you that the drugs play havoc on you emotions too. So be patient with yourself and keep your inner dialog nice to yourself.
As far as my cough is concerned I am much better. I just is taking a long time to get rid of the phlegm. It was a doozie. I am hoping that I will not loose my fingernails they are sore and getting little ridges. (OH BOY)
Here is a not so funny story. Last night I was feeling good and made a real nice diner for DH. I tryed to look cute when he got home and wore my favorite (and most expensive wig we named Roxy). Anyway when taking the diner from the oven I melted the bangs right off poor Roxy. I forgot that I even had it on. DAMN! $250.00 down the drain. I guess I can still wear her with hats. GUEEEZE!
Cakelady: I never had a port or picc line they just use one of my juicy veins every three weeks. I had only a lumpectomy on my right side with only 3 nodes removed. The reason that I mention this is that you I have a much lower chance of developing lymphedema even if they had to use the other arm. (which they have not) So I wanted you to know that you do have a choice.
I hope that everyone find something that cracks you up today.
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iPursuit:
I'm specifically coming out of lurkdom to address your post. Right now it's day 6 after treatment and it takes me longer than most to "come around" also. I was touched by your post and "I've been there".
Firstly, there seems to be a general observation that with the proper meds, chemo is very doable and, for most, the SEs are manageable and everyone will be okay in the end. I suppose it's better to go in with a positive attitude or how would we cope (or do chemo at all) if someone told us that you could end up terribly ill because of it. I was as physically fit as they come before starting chemo the first time. I figured I'd breeze through it because there was no indication I wouldn't. I'm the woman who gave birth with no epidural, took a shower a few hours later and was ready to go home afterwards. Me, not cope with chemo? Imagine my surprise when I didn't breeze through it when it appeared that everyone around me was able to. I did everything I was told, took all the meds, rested, prayed, meditated, ate right, you name it. Sometimes, it is what is is. I'd see movie stars and friends working through chemo wondering "how the heck do they do that?". It wasn't till months later that I also realized that all chemo isn't the same. Some chemos ARE stronger than others. Some people get MORE than others, some get a reduced amount, some are given weekly, some are not. There are all kinds of variants at work Please feel free to vent - this is a great place for it! You're no slacker - I wondered for years why I couldn't handle chemo as well as others, now I just don't give a damn. I'm a mom of two girls who went through chemo 5x with all the "bells and whistles" and I realize it's just how it is. If I can do that, I'm no "slacker".
Get the tools you need to cope. PM me if you like. I have lots of tricks up my sleeve because chances are I've had all the SEs in the book and even some they don't print on the sheet they give you. I'd love to tell you "don't worry dear, you just have "XX" more treatments to go but when you're in the throes of SEs, you just want the misery to stop...."
Here's hoping that by the time you read this, you're already starting to feel better.
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Boy, I'm just coming out of tx 2 fog. It's been a week. This one took a little more out of me! The heartburn with this one was unreal! I was prepared for the other side effects and then this SE was thrown into the pot. Just when you think you have it figured out something new comes up.
Ipursuit- I am trying to work to but it takes me at least 4-7 days before I can go in. I'm so sorry they are not helping you at your work- the cancer is enough without having to worry about other things. I hope it works out
Karen
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Bold.........thank you for your response. Wow, I thought most people would have a port of some kind because I heard that the chemo damages your veins.. I have small veins, and even when I was getting my surgeries they had a little trouble getting the ones in the back of my hand to pop up enough to use, but they did it. It hurt to get this PICC line put in and it is a pain in the butt. I have to go in every week to get the bandages changed and the lines flushed out. I developed blisters around the adhesive, so they repositioned the bandages last time, and try different tape in case it was an allergic reaction. I think when my 6 rounds are over with I will tell them to remove it and just stick me every 3 weeks like you,,,,, I don't know if its worth it to have this constant IV if I'm only going in every 3 weeks.. even when I am on Herceptin only,,,, isnt that still every 3 weeks? And Hey if you want a new wig, the American Cancer Society will give you a free one if your insurance doesnt cover it....thats what I am going to do.. My hair is coming out by the handfuls the last 2 days.....my treatment #2 is on Monday.
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Cakelady:Yeah every 3 weeks for herceptin. That is such a drag about loosing your hair. There is no words to express or any consolation for it. It just Sucks!!!! I can not wait to have mine back it was such a part of my identity. I for my own therapy when I see my own reflection in the mirror I always smile at myself. I know that it sounds silly but when I look sad I feel sad and its pretty easy to get depressed with all the crap we are going through. Thanks for the tip on the wig. If I can help you in anyway please let me know.0
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Cakelady, I can totally empathize with you on the hair loss. My 2nd treatment is Friday and my hair is coming out by the handfulls too since Sunday. I looked at wigs today. Today I put what was left of my hair in a ponytail and wore a baseball cap while I was at work.0
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ipursuit Your post made me cry! Do everything gramma and Bold said to do with the intestinal issues! I am sorry for you that Cupcake is busy right now, but she and I know the importance of intestinal health.Water, Water, Water and then stool softeners. If you have to take a full blown, double dose laxitive, do it!!!! These drugs can really hurt your intestines. I am so sorry that you are not getting support from your job. Shame - on - them! Do you have an HR manager you can talk too? They need to cut you a break.. Hang in there and please check in with us often - we care. You asked to see my four legged babies - www.JohhnyRebelAcres.com Check out the picture and just ride tabs. Please, please keep us posted. Lisa
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Another idea for constipation relief:
No matter what I do in preparation for chemo, I always get constipated. I have found that Dieters' Tea is an excellent way to get things moving. It is made of Senna leaf. I do not follow the directions; I brew it strong and then take sips every few hours until I feel movement in my large intestines, then I stop drinking the tea. My chemo days are Wednesday, but because I work full-time, and I can't predict the timing of the tea, I have to wait until Friday afternoon to start the tea. Once the tea works, I am fine from that point forward with a serving of Metamucil each day.
Cheers!
Cloud
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Bold, Mission accomplished: Your Fringeless Roxy story cracked me up. I hope you enjoyed your dinner anyway. I am glad to read that you are feeling better.
I had my weekly blood tests done today and while all levels were low again, the doc seemed pleased. So, if he is pleased, I am pleased.
Cheers!
Cloud
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ccbaby...Ya it's horrible , hair hair everywhere.... sounds like we are in the same stage.. Maybe I will wear a hat to work tomorrow too.... my coworkers are all great and we are going to have some bandanna days when I am bald.......and they will wear them too. We work mostly in the back, at a bakery. We do goofy stuff like that anyway.
Bold... thanks...you are a sweet lady.
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Hi Cakelady:
I've had two PICC lines and a PORT. I have an allergy to the adhesive they use to cover the PICC (tegaderm?). The protocol at my hospital is to clean and change the PICC bandages weekly but I found if I waited that long I'd get painful blisters (it was kinda gross and painful). I had a homecare nurse who would change my dressings every 2 to 3 days. Might seem like a lot but she was quick and it made a huge difference. I ended up with an infection from the blisters and was on antibiotics at one point with the weekly dressing change. Ultimately, I did away with the tegaderm and just used bandages. No problem with infection after that.
My veins are also tiny. It took them 1.5 hours to put in my first PICC, I'd been told to ask for a child sized PICC if I ever did it again. I had both PICCs removed immediately after treatment. At the time, Herceptin was given weekly and I was getting poked an awful lot - hence the choice for a PICC.
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Good morning All: OH BOY Something new! I have googy eyes. I think that it is conjunctivitis. What a drag. I think I might have some antibiotic eye drops. Other than that a headache and my ribs that are out from my cough (which is all but gone). I feel great. I sure do like that my taste buds are a little recovered.
Would love to hear from you girls that are finished on all the good stuff. How long it takes till you feel a little better etc.....
Mason:What a drag about your veins. When I was a working PA, they always gave me the difficult cases to start lines and do blood draws. I know that it can be tough like some sort of punishment. I often times used the leg believe it or not. One trick is to hydrate like crazy before infusions. Also a little exercise can help too. (if a person is up to it). Anyway I am sorry that you have to go through it.
Hope everyone has a wonder day. Working today myself. I think I hate getting dressed the most. Looking good takes me a lot longer. grrrr
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Bold: I'm only day 8 from last treatment, so I can't give any long term advice. However, I feel pretty good physically today and lots better mentally. It's really wonderful knowing I won't have to have any more TCH. I'm hoping that the herceptin only and femara won't be too bad.
My next goal is to really master living in the moment and not waste time worrying about the future. I'm doing better but still find myself falling into those negative thought patterns. I actually think I spend too much time reading the boards. They are wonderful support, but I think I'm addicted...need to find some other things to occupy my time. I will start working more soon so that should help.
Happy Easter weekend to all!
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Bold, glad to see that you are finally feeling better. One more tx and you are done...you go girl! I am almost 3 weeks out and starting to feel better.My eyes are still watering and twitching and my nails hurt. They never hrt before but I have read where this can happen after last tx. What a drag.Taste buds are coming back ...hooray! Things are definitely looking up and there is lots of fuzz and buzz on my head. Some dark and some that translucent baby bird stuff. However, I consider it all progress.
I pursuit. glad you enjoyed the "rant" after my last tx. It was of epic proportion and frankly it really made me feel better. After tx was over I felt overwhelmed, exhausted and very tired. I have been resting and trying to take it easy and get over that battle.Sort of like post traumatic stress syndrome.
rayhope, everyday we must remind ourselves to live in the moment. If you find support here then it is good. Everything in moderation is the answer, I think. Being on the boards can be like an addiction to checking your e-mail or facebook etc.
I' m going on vacation tomorrow with some of my girlfriends. I am so excited.
have a great Easter.
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Carolyn: Enjoy your well deserved vacation! Maybe we should all plan a trip after chemo. I think I'll start working on that myself.0
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Bold: I am 8 1/2 weeks out from the last tx and I can report that I am 80% back. My energy level is in full strength and my muscle and ability to lift and sling heavy stuff is coming right along. And I can finally say, I am please with my hair growth! I don't have "shiney head" anymore. What I am NOT happy about is the loss of eyebrows and eye lashes in the past two weeks - but oh well, I am a trained make-up artist so I can take care of that.
It really is amazing how fast you start to feel normal again and the past months are no longer a consuming force in your life. I think it is like child birth - the actual act is very painful but you know you have to do it and then you just forget about it after you get thru it. Sorry guys, I have never had kids, so if that is way off the mark - I apologize.
Sheila Unfortunately, most estheticians are not trained to deal with chemo, try hard to find one that is. I made it a point years ago to get myself trained due to so much cancer in my family. And now as a cancer survivor myself I have put "chemo care" in the curricculum of the esthetics licensing course for the State of Florida that I teach. Going thru chemo with me has been a great learning experience for my students.
Lisa
Lisa
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Okay Lisa we are due a picture if you have some hair
You might have to give me some pointers on the makeup for the eyebrows I am hopeless. 0 -
Mason....... wow, that was not fun, and I'm complaining about one PICC line... well, now that Herceptin is given every 3 weeks, would you have removed the Picc after the main chemo was done and just get a regular IV every 3 weeks just for the Herceptin? because it seems like a year is an awful long time to have a PICC, especially for such spread out treatments and the fact that infections and blisters, which I got too, are a pain to deal with. Also the fact that you can't get it wet, and I have to go to the hospital every week for the dressing change and the flushing of the lines. Seems easier all around to just get the IV every 3 weeks and be done with it until the next time. I have not asked the doctor about it yet, I am only coming up on my 2nd TCH so I have this line until July anyway. Thanks for the input.
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JaimeiH - A good quality eyebrow pencil!!!! Quality is the key! A bran that you can get anywhere is Lancome - they make a really nice pencil that sharpens to a fine point. Get the one that has the brush at the other end. Once you "draw" the brows, lightly use the brush over the drawing to break up the "fake" look. Many other "makeup counters" make the same thing. Just avoid the drug store brands because they tend to be heavy and do not glide on well.
Lisa
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Hi everyone....had my Herceptin today. Does everyone get Benadryl with their Herceptin only treatment?? The nurse told me today that there are a few of her patients that get it without, but the SE are back aches....I choose to go ahead and get the benadryl (have enough other SE, dont need that one too)
I had my eyebrows tattooed this week. My friend, an esthetician did it for me at no cost (very very sweet of her). I can handle my hair falling out, but not my eyebrows....Dont think I could draw them on correctly. I am not very good with makeup. Right now my eyebrows are sooo dark, I look like a doll (kinda of goofy looking) but she said it would fade in a week.
Wishing everyone very minimum SE's.......Good Night!
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Paula: Hip hip hooray for sure! Congrats and the #6 will be a cinch cause you know it is the last and you can do it. AND congrats on that new grand baby...You both are starting a new life together. Many years of joy ahead for you.
I have been coming in and reading but not posting cause you gals are doing such a wonderful job in reaching ahead, but reaching back to help the newbies coming in. Remember how scared and green you were at first...man what a crash course you have went through. Such seasoned campers.
I am trying to get to the bottom of why some of us has more vaginal dryness and problems and I think I may have a gyn dr that is interested in finding out why too. I will keep you informed. We are now going through the yeast meds...wouldn't that be the end of it all. A simple yeast infection. I never thought it may be that simple as beings over my lifetime having many yeast infections this is small compared to them. If you ever had one you well knew it. This has been a lingering burning and very small itching at times for over 8 months.. It could be the wacked out system with the chemo and the antibiotics I took two different times for colds. Could be just a smidgen there to cause havoc, but like I said I will keep you updated. Speaking of colds two days ago I came down with a sore throat...no biggie, but then I thought I had a kernel stuck in my throat and looked to see two huge pimple like pus pockets. What the??? Well I first thought of Strep cause it was weired looking, not just a simple red throat. I have surgery in 20 days and didn't want it postponed for strep so 12 hours later found no strep and today the throat is clear???? Since having cancer there seems to be strange things popping up. I have no idea, but its gone. BTW no fever, no runny nose, no cough, just the awful sore throat. Maybe our bodies now is super fighting anything that comes along...
Ipursuit: I went all the way back and read your post. I feel so sorry you. Aloxi and Emend is to STOP nausea not cause it. Talk to your onc and have them cut back or do something to help you. Being constipated does cause nausea too so have to clean that gunk out.
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Cupcake: Nice to hear from you again. So happy for you that its not strep...I wish I had some advice for the soar throat.....but I am sure you already know all the tricks....I am awaiting to see what you find out about the dryness....that is one of my issues along with the NOT wanting to do anything. Im not sure if it is a SE from the chemo or if it is just me not feeling very sexy.
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Smile - I CANNOT BELIEVE your onc let you get permanent make-up during chemo! Mine would not let me do it 2 weeks before I started chemo! That seals the deal! I am getting a tattoo when I go with my girlfriends to St. Augustine next month!
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ooops I didnt ask!
I want a tattoo, but I am waiting to go to LA and Have it done by one of the cast members of LA Ink. Not sure if it will happen, but I am holding out to see.
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