Taxotere, Carboplatin and Herceptin
Comments
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Dear Jo Anne;
I certainly didn't mean to exclude you. Yes, it sounds like you definitely deserve a Bela Lugosi and possibly the Weight Watchers award. I haven't thought of a clever name for it, but I think I deserve the award for being the one who COMPLAINS the most about her weight.
And a couple ones came to me after having a post four a.m. Xanax-induced nightmare about my youngest being kidnapped by armed terrorist and my husband being held in our family room at gunpoint by a gang of perverts who just wanted our XBox 360 and any porn we had in the house. So how about:
The Cyberhypochondriac Award for the camper who has consistently freaked herself out during treatment by googling various side effects and study results on the internet. Using "camp speak", this would be the girl who runs to the nurse's tent with a stomach ache after dinner convinced that she has amoebic dysentery. Several of us, including myself and Aly, would be top contenders.
Best Costume. Did anybody but me take advantage of their baldness for Halloween? Did anyone do Uncle Fester, Sineaid O' Connor, or at least crazy Britney? I know, some of you weren't bald yet or bald anymore, so it really isn't a fair category.
And then, this might be a reach, but how about the I Kissed the Exhaust Pipe Award for the worst mouth blisters found on a living human specimen?
Well, my brain is beginning to turn to mush, so ...hey wait a minute! How about the Cranium Full O' Cream O' Wheat Award for the most ridiculous mistakes resulting from Chemo Brain (which might resemble the Darwin Awards).
And finally, the Rock 'n' Roll All Night Award for the camper receiving the hugest buzz on Steroids.
And by the way, Sue, there is no dress code for these awards. I plan to be wearing a strait jacket and a pink tutu!
Gotta go. I'll check in later.
Shelby
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I just got home from the hospital on New Years Day.Went in December 23, as I had severe gastritis from my chemo the week before.Then I got a fever with neutropenia the day after Christmas, so on IV drugs.Blood tested fine,so possible the fever was from the herceptin infusion I had two days before the fever..The doctor wants to put me on Neulasta before my last two treatments(number five is this coming Thursday and my last is the 29 of January) Would like to know everyone's thoughts. I have read horror stories about Neulasta,that the side effects are worse than chemo.I am still trying to get my stomach back to normal, so want to add as few meds as possible.The doctor had me on Protonix,but insurance refused to pay,he put me on Prilosec, do not think it is working as well.Need lots of input here!! Jackie
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Wow shell that is cool. I never won an award ...with such distinction..before....the Golden Latrine! wow is it a gold embossed commode on a pedestal? What an honor! lol I think you are right and for those who read this just keep in mind that even AFTER chemo you still have to be careful and treat yourself just as you did on chemo. Colds, infections, etc. are very serious when your body is so low. The throat is better today. I think with just getting out of surgery and the thing they have down your throat, plus the throat cells not totally being healed caused the sore throat to act like throwing salt on an open wound. I am very weak today, but much much better.
I will be thinking of you on the slopes. You have a wonderful time for me too. I used to ski many years ago, but at my age I want solid ground under me. For today I just look at people out doing things rather it be raking a yard or shopping and just want to join the real world again. I want to have some strength again. I am tired of being tired. Still nothing on the Pathology report. Maybe this week coming up with the holidays being over. When they said they sent it to San Francisco I reminds me of a song I once heard with a little bit of word change..."I left my boob in San Fran cisco...
Blue my prayer is you WILL walk away from this and not have cancer again, but this life experience will leave you changed forever.
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Dear Jackie,
I wish I could help you with information about Neulasta -- since I had it every time with chemo, I cannot separate the s/es. However, I was in good shape blood-wise throughout and felt that Neulasta had done its job -- did have bone pain the first couple of days after the shot. Hydrocodone worked on that. I know it's a drag to think about more drugs to offset the s/es of the initial and secondary ones.
Hope others have some good input for you.
Best wishes - Bethany
p.s. This is my new hair and I am going commando now. It feels so good to look like I made a choice and to feel the breeze -- Now I'm probably not perceived as a victim or a person with cancer -- that maybe I'm just some kooky girl who likes exotic European haircuts.
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Jackie, I had the Neulasta with all four of my treatments so far and this is the first month that I am feeling some bone pain in my lower back. I must admit that I didn't take the Aleve to suppress the pain this month because of my kidney concerns, so that is probably the cause of my discomfort. I did take the Claritin yesterday, but I didn't take any today. I was told that the Claritin helps.
I will tell you that my white cell counts have been good and I suppose that this is due to the Neulasta.
Bethany, your hair looks great. Congratulations dear.
Cupcake - Thanks for the advice about "after chemo". We are all so anxious to get back to normal that we need to be reminded to take it slow....right? My hopes and prayers for you are for blue skies only dear.
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Cupcake,
LOL "I left my boob in SF"
I just re-read your post -- please post the rest of the your own lyrics as soon as you hear.;-)
Maybe something like:
"The loveliness of raking
Seems somehow sadly gay
The glory that was shopping
Is of another day
I've been terribly alone
And forgotten in the chair.I'm going home to my new titty by the bay.
I left my boob in San Francisco......
The morning poo may fill the air,
I don't care"....ok, anyone else feel like jumping in.
~B
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You guys are nuts!!!!!
Jackie, I too get Nuelasta the day after every treatment. The first time I took percocet left over from my surgery, but from there on, I just take tylenol for the first 36 hours and I am fine. My red cells did tank, but Nuelasta is for the white and they are not too bad.
Cupcake, I am so glad you are feeling better. You just need to kick back and let your battered body rest. You will get your strength back in time. Just say a prayer, take a deep breath and prop your feet up with a good book. Or better yet, help Shelby compose more awards!
Beth - I LOVE YOUR HAIR!!!!!! I can't wait!. I have a countdown on the main page of my laptop for the last tx (38 days if anyone is counting). I think I will start another for my projected date that I can go camando!
Blue, we will come out the other side of this side trip from hell, just your wait girl!
Hang tight ladies!
Lisa
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Bethany: Great hair! I've been on vacation for two weeks and haven't worn the wig but a few times - but my hair is SILVER! I can't wait to get some color on it! I was with dd, and I said that I felt like everybody must feel sorry for me because of my chemo hair and she said no, they felt sorry for me because I had gray hair. I'm like you - I think some people actually DO cut their hair really short like this -- like. . . Audrey Hepburn! Yeah, that's the ticket!
Love the lyrics - I was thinking along the lines of "My Boob Went to San Francisco and All I Got Was This Lousy T-shirt." We'll give you some kind of award for that, Cupcake - Most Exotic Location for a Dislocated Boob. I think mine just stayed in Phoenix - how boring.
Shelby: Hope you're having a great time. I lived in Colorado for 10 years and was always terrified to turn the tips downhill, but I could carve some pretty amazing S curves!
Love you all,
Sue
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Jakcie - I forgot to respond to you - how awful to be in the hospital for Christmas. I'm so sorry you had such a horrible reaction. As for the Neulasta - I got it every time and did get some bone pain, but it wasn't that horrible. Like Bethany said, I took Tylenol or Oxycodone on the day after the injection and then it was better. I think keeping your white cell count up to protect against infection is more important than another annoying yet "doable" side effect.
Best wishes - hope things go much smoother here on out.
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My oncologist cuts the dose of Nuelasta in half for those who have bad reactions. When mine was cut, I still recovered my white blood count -- to even higher levels than before chemo. You might want to ask your oncologist if this is a possibility.
Good luck!
Jo Anne
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I didnt have any side effects from the Neulasta- I had it starting my second chemo.
Shelby- I can probably compete on the most days spent as an inpatient in the hospital during chemo- 4 days after treatment 1 for neutropenia and 9 days between tx 4 and tx 5 due to a staph infeciton in my PICC line, might compete on weight lost during chemo (around 40 pounds) or maybe most cooking during chemo since that was my distraction whenever I felt OK. Anyway, love the awards- we just to think of one for everybody!
I go in Thursday for the hysterectomy so I will be offline for a while- all the hospital has is dial up (for patients anyway) so I probably wont take the laptop with me- just too dang slow. I will have to catch up on reading instead of playing online.
Kristy
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I started TCH treatments December 18 and will be finishing in April. Then I will continue with herceptin every 3 weeks for the remainder of the year. I had BM with tissue expanders prior to beginning chemo. I know I can't have the exchange surgery during TCH treatments. However, I wonder if it will be possible during the time I am on herceptin only. Does anyone have experience with that?
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Sue, my hair is silver too. I have been wondering what it looks like up close since it is still just "fuzzy". A friend of mine got a serious look on her face today and said "you do know your hair is white don't you?" I am only 38. I did not have ONE gray hair before this and now I have all white hair. It just keeps getting better. I dealt with one boob, gaining weight and being bald. I only wore my wig twice through out all of this. But I do not want white hair yet! Someone please tell me this will go away. I am thinking of shaving it all down again in hopes of a darker crop next time. UGH!
Good luck on Thursday Kristy. I hope you are back on your feet soon.
Rayhope, I do not know the answer to your question. I have to wait until after radiation to even think about doing anything. Speaking of Rads, I start tomorrow. I am a little excited to be moving forward. I know some of you mentioned a cream that you used. Any advice would be appreciated.Have a great week everyone. I will try not to freak out and shave my head...again
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Traci, the white hair is probably just your baby hair. When our hair starts coming back, it is just like a new born's - only damaged. As the fuzz changes to an adult texture, the color will return.
Lisa
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Thank you sooooooo much~!!
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No problem Traci! I teach in the cosmetology dept at the local college. I don't teach hair (I am skin care) but I have quizzed the hair teachers relentlessly!!!
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rayhope: I finished chemo on July 22 and had recon on October 14, obviously while still doing Herceptin. Shelby is doing recon this month, and she's still doing Herceptin also. Yay - surgery - something to look forward to! (I completely understand your desire to get rid of those expanders and on to the next step.)
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Suemed: Thanks for the info. I see my PS tomorrow for 6 wk check up and will see what he says. I've never really looked forward to surgery but will be SO GLAD to see these expanders go.
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Traci,
The cream I ordered is called Jean's Cream and you can find it online -- MD Anderson carries it at their store which I considered to be a sound endorsement. But,I think I was successful at keeping my skin healthy by using straight aloe vera -- took small cuttings everyday and split it open and smeared it on my chest and under my arm until it air-dried. Also I used corn starch for sweaty areas. About 1/2 way through I got an itchy rash on my upper chest where I'd had sun before and the radiation onc prescribed something called: Topicort (Desoximetasone) -- he said it's an older drug but works very effectively -- and it did.
Don't worry. Radiation will make you dog tired but not until later. And, after chemo, it's a cake walk. Just relentless in its everydayness.
Best, Bethany
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Hey guys;
I'm dead tired, because I skiied the best snow I've ever seen in my life today until I dropped. But I need to answer a couple things.
Rayhope: Yes, you can have recon with Herceptin only. I am having recon next week, but my Hereptin has been interrupted until they can figure out why one of my cardiac atria is enlarged.
OK Kristy Ann...sounds like you're up for the Greatest Loser Award and the "In Da House" award for longest inpatient incarceration. Aly is probably a contender for that one as well.
Cupcake: Great lyrics. I have a sibling who's transgendered. "She" left some parts in San Francisco, too. Just think what Dr. Frankenstein could do with all that. Yuk!
To all of you with hair issues: I hate my hair. It's hair, but it's not "MY" hair. But my face isn't my face either. It's about 15 years older. I don't like it. I look like the most unflattering pictures of Gertrude Stein. But you know, I used to color it about every 2-3 months and get the most horrendous dermatitis reactions to the color. And that stuff is nasty, when you think of toxins in your system (although it probably doesn't hold a candle to good ol' Taxotere!) So I'm not sure I want to go that route any more. But I don't want to be Gertrude Stein, either, shlepping around with Alice B. Toklas. Euwww. So what do I do? Avoiding mirrors only affords temporary relief. So I'm feeling your pain. I not only look like my kids' grandma, but I'm looking like my HUSBAND'S grandma!
Bethany;
I read Plan B on the way out here. Annie's the best!!!! My 11 year old daughter Brigitte was looking over my shoulder when I was reading your entry. She says "hi". I talk about you guys all the time, so you're just part of the extended family.
Happy New Year to you all! And if I'm not in extraordinary pain tomorrow, it's back to the slopes for probably another powder day!
Shelby
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Hi Shelby,
Glad to hear you are having some fun. I go for my ECHO today and will ask that the entire report go to my oncologist. I will also email her and ask her to read the entire report.
Some people are checking into our old chemo list. I am sure they would like to hear from you, Bethany, cupcake, etc.
I am now half-way through radiation. So far, my greatest problems have been the strain on my shoulder (reactivated frozen shoulder condition from positioning) and getting there in the worst month of New England weather -- ice, snow, very cold. I hope I can make it when I start to feel more tired.
Jo Anne
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Jo Anne I am like you about losing and gaining weight but I know a woman who gained a lot on chemo. She did not get sick like I did and could still eat but I am wondering how she got by with not being so sick. I don't mean she didn't feel bad with it at times but she could still eat. she did not have mouth sores either. We took different meds and I wonder if that is why,
I worked yesterday for the first time and boy it didn't seem like 1/2 day. I had to cook supper for all of us yesterday after work too. Besides that we had to go down to the hospital for hubbys cardio rehab that morning. I sure was wishing he would tell me he could go by himself but he always wants me to go with him. Anyway I will be going everyday if I ever start radiation. I sure dread that and working. This week I am just working 3 1/2 days but the standing on my feet is hard and I can't believe how much I forgot and then I could remember a lot of people's names. All my customers were really glad to see me back and some did not know why I had been gone. Even some of my friends at the main bank did not know. I slept good last night though. My grandson has a puppy and it is here this week since he is going back to college this weekend and taking the puppy with him. I have to run her out side all the time so she won't go poddy in my house. The grandson is being pretty responsible but he works days.
I can't think of any more awards but then my brain is still tired from working. I will take any award esp if it comes with cash. does any of these come with cash?
Shelby I hope your vacation was great. It is so cold here I just want a vacation in a warmer place not cold.
I hope everyone is doing good. hang in there if you aren't, this shall pass. I know it does not feel like it but it will and each day I forget how bad I felt when I was sick. Puppy is awake and wants to chew electric cords.
Carolyn
Carolyn
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Well ladies;
Well, I'm back at the house after taking a nasty spill down the powder which caused my entire right leg to torque below the knee. Took a not-so-fun ride down the Ski Patrol tobaggan, and managed to ruin my family's day of skiing. All this on just our third run of the day. And the kicker is that I can't take anti-inflammatories, because I'm having surgery on the 16th. I decided not to go to the hospital for now. They would just put me in another MRI machine to find out I've sprained something I can't pronounce, and who cares, because I won't be able to do anything for 6 weeks anyway. So it's a good thing I like to read. Oh well. I guess I'd better stop eating since I can't move anymore. I'll keep you guys posted.
Shelby:(
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Oh no, Shelby. What a huge huge drag. I am so sorry to hear that you hurt yourself. Your award which was to take into account your three-day walk now has a new slant on it.
Will you be in the hospital overnight on the 16th or will this be an outpatient thing? I will be thinking of you and praying for you to have an easy time of it. Were you skiing with your expander and the catheter? You are one strong and brave woman. I'd be a sissy just b/c of the portacath. - not to mention my decreptnitudinosity.
Carolyn, You are such a cheerful trooper with all that you take on and have to deal with. I hope being back at work is good for you in every way.
Hi Brigitte!
((()))) Bethany
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bethany, I love your hair. I hope mine comes in darker soon. I would think it makes you feel "normal" after being without hair for so long. I forget I am bald all the time. I have gotten used to it. When people come up to me and ask me if I am okay it takes me a second to realize they are asking because i am bald. I never thought I would be more comfortable bald than with a wig. I really regret spending so much for my wig. I have only worn it twice. I think I will give it to someone that cannot afford to buy one. Someone that will use it.
I started my rads today. Very uneventful. I also had my herceptin. I have had Herceptin weekly to this point so I got my first triple dose today. I was tired afterward. I don't know if it was the Herceptin or if it was just from having a long day.
Shelby, I am so sorry about your fall. Curl up with a good book and enjoy your vacation anyway!
Carolyn you have been through so much and you remain so positive. You are right, you do forget how bad it was as each day passes. Yesterday I felt sooo great. I even took my 18 month old for a walk and I have not been able to do that in months. I hope you enjoy being back at work. Sometimes the distractions are just what we need.
Good night to all of you and you are all in my prayers....Traci
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Hey Traci;
I'm very glad you had an uneventful Tx, both with rads and H.
I'm going to take this whole thing as a laboratory in human growth: namely, Can Shelby overcome being self-centered? I really need to suck it up, be grateful, and all that stuff. My main concern is that my husband and kids are having fun, which I need to make sure they go out and do things even if I can't walk....so my husband can't be a martyr. We're up here with a grandpa with two kids my kids' ages....so we can work something out, I'm sure. Best case scenario: They'll all go out skiing on Thursday and I'll enter some kind of stupor, wall off with my iPod, and write. Actually, the best case would be to feel like skiing, but since it's hell to lower myself onto a toilet right now, I don't quite have that much faith.
Yeah, Bethany, I skiied with the expander port and everything. I figure the number of women skiing with silicone boobies at any one moment in the state of Utah numbers in the thousands. And since mine is under less pressure than many of theirs (A cup on a good day), I'm beating the odds. And if it pops? So what, at this point.
Well, I'm in that Job place of working through a quantum leap in my paradigm. So I might actually delete this before morning, like I have done before when I've been really whiney and negative.
But I might keep this one on here to demonstrate that having breast cancer (and I won't abbreviate, because I'm not afraid to say it) doesn't fix all your psychological shortcomings. The "journey" as all the chicken soup people like to call it doesn't necessarily entail fixing your busted clockworks. I think all it does is highlight (with pink neon?) everything that needs to be fixed.
If I feel better tomorrow, I'll delete this so it doesn't scare the newbies to death.
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"Having breast cancer doesn't fix all your psychological shortcomings." Yeah, I'll go along with that one, and so would everybody who knows me well, I'm sure. My friend who was dx about 6 months ahead of me and I discuss this a lot - we probably get more "passes" from others than before ("Oh, ignore Sue, sure she's being bitchy, but she's had a touch of breast cancer lately, you know.") but are we essentially the same people? Hell yes. Now, I'm actually a pretty upbeat person, and I am amazed that that is usually still the case (except when I'm terrified, and I don't talk much about that any more), but all of my negative traits are certainly still there!
Okay, Shelby, I'm changing my award for you from something Wonderwoman-based to something more along the lines of some Nordic filmmaker or deep-thinking philosopher. . . but then I'd have to look up the spelling of Nietzche or Kierkegaarde or . . . who made The Seventh Seal???? And since laziness is one of my psychological shortcomings, I'm back to the Best Lynda Carter Impersonation.
In a less philosophical mode, I hope you're up and around SOON. I took a dive one time and the binding didn't release and I still feel it some days. Hope the family continues to have a great time . . . and you too.
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Shelby, I hope you are not in too much pain. shame you can't take something because of the surgery. did you put ice on it? If not just go sit in the snow with that one covered in it. I wonder if you could made a one legged snow angle? sorry to make light of you pain but like cancer it is better to laugh than cry which we had done some of I am sure.
Bethany, I like your hair. Mine is coming in with a lot of dark but not getting as thick as yours. My hair used to be so thick but it is not as long as yours yet and my bald head is shinny. It is weird because some are longer than others. I guess it just makes you same hummmm!
I was so tired last night from work and I was suppose to work on Thursday but the one girl came in and gave her notice and so they do not accept 2 weeks notice which I don't think she realized. We have had 2 girls embezzle at our branch already so they did not let her stay. she was sad I think so the other one refused to work Wed. I told them I would work since Wed is a slow day anyway. My assist manager is very sweet and afraid it would be too much on me but I told her I would be alright. I am not taking rads yet. I was dying last night after supper and went right to sleep on the couch about 8. the one that does not want to do what they ask did not want to close out the work which I have not learned about all of it but I told her she had to because I had not got that far yet and Grant said she knew how. he had to go to college. Well she did not like that either. It would be easier if I knew how do do it all but I don't. You can at least sit doing that. I was taking care of customers. they all want to talk to me and tell me to not do too much. I really have some sweet customers. some do not know who I am until until I talk. I have that TX/OK accent. haha My sister called me around 9 to tell me my brother is getting better but he is still bleeding somewhere and they are still giving him blood and platelets. I am worried about that but she thought it was good news so I agreed. I sounded like a drunk I guess since I was sound asleep. I did not even hear the phone and hubby had to answer it. I wish he had just talked to her and relayed the message.
I hope everyone who is not writing is feeling to good but I am afraid they are like I was and do not feel like looking at the puter. Take care of yourselves if you can but I do wish I had done a little more exercise so my muscles were not so weak now. I am not sure it would have helped. About all I got done was a little house work and laundry which I laid down between loads. Should have, could have would have!
Carolyn
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Carolyn, I am so glad you had a nice week back at work. You amaze me every day. You just get out of bed and do it. I just love you. You are too young to be my gramma and too young to be my mom, so how can I adopt you? I am not kidding!!!
Shelby: Ouch. That just stinks. I am so sorry. I know how much you were looking forward to this trip. Well, look on the brigtht side. You are away from home, away from "that BC stuff", in a beautiful home, surrounded by friends, able to kick back, and .... caste away your worries. Light the fire, position the bad leg on the pillow and call for "family service" (as opposed to room service).
I am so glad that "healthwise" our group has been good for the past few days.
Lisa
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Cupcake? you ok?
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