August 2010...anyone starting chemo besides me?!
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Good morning all...and an excellent morning for ...
CALAMYTKEL! Congratulations as that is just wonderful news! I am very happy for you. LOL after reading your post about the biopsy while in the waiting room for, you guessed it, a DR APPT! That was hysterical! So glad you are clear for take-off!
Welcome to our new members: Ckptry, CindyRN and Ginger.
Best of luck to those starting tomorrow: CindyRN
AliceJean, Lisaattheshore and JSW19 starting on the 12th and 13th. Please send good wishes and vibes to them as they begin. Rachel5738 is also starting on Friday the 13th and good luck to you all as you embark on this journey.
Zenith: I am so happy to hear from you and with good news!!!!!! I am so glad the spot on your rib is not mets. Such good news. Keep us posted.
Kitty: thanks for checking in with us and I am very glad you are on the road to puttng this behind you!
Sohard: how are you doing?
Ladyinbama: so glad you and your new husband are weathering this storm together. I am happy things are working out for you. These are the times when you find out who you are dealing with so glad you made such a fine choice
JOYSTARS! thanks for stopping by! I miss you guys over there! Webstermom stopped by as well! I am so happy to hear from you both. Please keep me posted, either here or in pm, about your baby progress and how things are going. Take care, chicklette!
Wherria: You don't ever have to apologize for sharing your experience and letting us know where you are at. This board is going to be here forever and it is necessary that we let people who have yet to join us in this fight know what each experience was. More importantly, however, I started this thread so we can SUPPORT each other. That support is through the good and the bad. This is the time to talk and share with us about what you are going through and no one is judging. It is fruitless to worry about things that have not happened but you are in the midst of some challenges that ARE happening and that you need to talk about. Please keep coming back, share with us and know we are here for you.
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I will do a midweek update tomorrow. Best of luck to you all this week and for those of you who are already in progress, don't forget us. Come back and let us know what is going on.
YOUR FEARLESS LEADER
Aka Liz!
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A special welcome to our new members:
CindyRN; yes, we will beat this! I will be in a 12 week rotation as well. See my onc tomorrow.
Gingerbrew: thanks for joining us and be sure to come back and join in with news of your progress.
Ckptry- I am sorry you are having a struggle with the schools on top of your own challenge with bc. I am really sorry and my heart goes out to you. There is only so much any one of us should be dealing with at once and I think you, and others here, do have a lot. Share, share, share because, if nothing else, it helps to get it off your chest.
This thread is about support for what you are going through while we take this journey together so don't be shy!!!!!!!!
Best of luck to you all-
Liz
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I am starting chemo Thursday Aug. 12. I am amazed how many ladies on on this thread now!! Best wishes to all of you. I hope our high expectations fit with our realities. If not we just have to adjust because reality always wins. We have to adapt and not be unhappy and disconnected. I am going to learn to do this chemo stuff and practice it until I am good at it. No magic words, no magic tricks and no magical thinking. My husband says a jackal dies a thousand deaths but a lion only dies once. I am trying to be more of a lionl
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Lizzy-lol! Yup, I gotta keep laughing. God blessed me with a good sense of humor. It's gotten me into trouble sometimes, but it's also gotten me through a heck of a lot in my lifetime. I find humor in the strangest places and things and it gets me through! And I have a great husband, who minutes before my surgery, as we were flipping through the channels on the TV in pre-op, paused on Mother Angelica Live and said in a totally dry way that it looked like his ex-boss in a habit. So he had me in hysterics when they came in to wheel me away.....
My faith is most important to me, BUT I find that humor sometimes gives me the crutch I need to stand on in a bad situation -sometimes I feel like my life is a sitcom.....:)
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Hi,
Liz, thanks for the welcome, and for starting this group, it means alot to me! My husband is wonderful, but tries to point out positives when I want to shout this just sucks! I don't always want to be negative with him so it helps to have someplace to go where people get it. I got my powerport placed this morning; the topic about details of port placement helped prepare me. It didn't hurt, just alot of pressure. I wanted to peek around the drape to see if the doc was kneeling on the cot for leverage - it felt like he was pushing that hard:-) Feel ok but definitely tender in the neck area. Tomorrow's my echo and then just the countdown til chemo...
Carolyn
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Lisa - I start my chemo tomorrow then meet with the rad oncologist on Monday....though I have 9/20 nodes involved and a large tumor! It is my understanding that rads will begin immediately following chemo!
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Hi,
Here comes a danish woman along in the chat, I'll start chemo on the 13th of August and would like to be alongside all you women out there going through the same. I was diagnosed through a rutine scan in June, operated in July, luckily no spreading to the lymph system. But the tumor was grade II and HER2 positive, so I will do 6 times chemo every 3 weeks, 5 weeks of radiation and together with my 4th chemo start herceptin every 3 week, 17 times too. Finally five years of anti-hormone tablets. I had my port set in yesterday, near the chest bone, so I feel that I do look like some fancy kind of patchwork. It still hurts, since there was some pulling and pushing in placing the whole thing right, but I hope it will be a great help when I start treatment on Friday. The first time will be only 20 minutes, but probably I'll loose my hair already two weeks after. Has got my wig - financed by the taxes here in Dk, and bought two paperboy caps during my holidays, but still really can't see myself wearing any of these. Can't really concentrate on anything else, and this forum is so great, Denmark is rather a small country, so even if we do have a national forum too, not so many women participate. So I look forward to reading about your experiences.
Love from DK
Lisbeth
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Calamtykel: YEAH!!!!!!!!!!
Cindy: Good luck tomorrow. I hope you enjoy your meal tonight.
Lisa: I have already met with my radiation oncologist twice. The first time was while I was still in the decision making stage - lumpectomy vs mastectomy. He did give his thoughts on that and explained what radiation is like. The next time I saw him was just last week and we discussed the path report. He just called me yesterday and he told me that he usually has patients start radiation about 3 weeks after the last chemo tx as long as you are feeling okay. Like you, I am hoping to get this over asap so I was glad to hear that news. I also am hoping to be done (except for PS) by the new year.
AliceJean, Lisaattheshore, JSW19 and Rachel5738: Good luck to you all.
Lisbeth: Welcome! I'm glad you found us.
Janice
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Zenith (I also start chemo on the 12th) Went to see the oco nurse today. So first party involves TCH then Herceptin week 2 and 3. Came home with a bag of meds to take before, during, and after. At least the office is about 10 min from my work so I can leave work at 3:00 and get there for the H treatments. Beth
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hi. Deb J here.
I had my powerport placed yesterday, and I was surprised that it is placed so high. It is almost at my collarbone. I am wondering, goejsen, if yours is too. I really expected it to be lower and nearer my sternum. It hurt. A lot of the problem was the way it was dressed. They put that clear plastic sheet on very tightly and it was tugging on my neck. They redressed it once I got back to the SameDaySurgery bed, and last night I redressed it myself with as little tape as possible. It is better but I will be glad when it toughens up. I had Muga and Bonescan too. I was told to keep it dry for 7-10 days. Any tips for showering around this thing?
I have first chemo Monday. Onc asked to do first one on Monday, saying this way he knew I would be able to get back into office during the week if necessary. He said it could take as much as 4 hours as my port would be fresh and they would give drugs slower the first time watching for any reactions, etc. I have delayed returning to work until the week after chemo. I am a bit worried about returning to work. I do detailed work, with extremely high production and quality standards. I am just hoping I can keep up. How are others faring in the work environment. I am able to work from home. I do health information analysis and coding. Any others out there?
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Thanks for asking. We moved from Illinois to Redmond Washington. I had surgery in Illinois. I go to the SCCA for treatment. I arrived here on the 10th and had my big clinic appointment on the 13th of July. We were in a hotel at first but bought a guest room bed andmoved into the empty house. Our furniture arrived July 28th, those cross country movers have few rules.
Getting cancer in the middle of moving ispretty bizarre timing.
It is really beautiful out here and the climate is mild. We even had a bear steal our garbage!
I have my second chemo this next monday. I am feeling pretty good today, trying to avoid acidy food and drink to help avoid mouth sores. I hope that helps.
Ginger
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Welcome Lisbeth! Didn't realize we were an international group, but glad to find that we are! I hope you'll find good information and support here. Sorry about the World Cup. I was really rooting for you guys!
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Hi! I guess I can add my name to the list. First treatment (TCH) is August 19th. I will have a port put in on Friday this week. I am so scared for all of it! Look forward to having a great group to keep in touch with and supporting.
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Added my diagnosis signature.
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About Shingles
My aunt and friend both had shingles during chemo. I asked my surgeon if I could get the shingles vaccine and she said yes. So on July 9th, the day before we moved to Washington, while my house was filled with movers, I left and I had a shingles vaccine injection. It was about three weeks before chemo started and I sure hope it works. If my aunt and friend had not had it I wouldn't have persued it.
To help herself my friend used to fill the bathtub with ice cold water, get in, hold her nose, and submerg herself.
I don't know if this helps anyone or not but maybe it will be good info. My understanding is that once you start actual treatment you can't get the vaccine.
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Hi deb,
I had a powerport placed this morning. It's about 1.5" below the collarbone, but off to the left so it's not too noticeable. It really hurts when I move my neck. They said I could shower tomorrow, but not to immerse it in water for 5 -7d, swimmimg, tub etc... Mine has glue, no dressings.
Carolyn
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As I had told the fearless leader Liz - I would be popping in every now and then to offer support as one who has been thru this.
I see a few new TCH'ers and wanted to point out the Taxotere, Carboplatin, Herceptin thread - it has been going for awhile and will offer good info for those on this type. It was also what I was on.
Will be happy to answer any questions regarding this one - feel free to pm me if needed.
You all sound like a great and strong bunch - keep fighting!! Best of luck to all!
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thanks ckptry. mine hurts too. I have steristrips all over the place and I have replaced the dressing with a large sterile gauze pad we had here, with some paper tape. It's going to show with a lot of my tops. It is so close to my neck. I will keep it dry but I am showering tomorrow somehow or other! Hope you feel good soon. The nurse told me to use Tylenol and I have but I think tonite I might take a pain pill. I have lots left from my surgery. Funny how this little thing hurts so much more than that big thing!
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Good Evening Ladies,
Day 5 of round 1 A/C tx. Day 3 and 4 were the roughest but better than I had imagined. Extreme fatigue and nauseated, but did not throw up. Glad I had tx on Thur so hubby could have baby duty ( 1 yr old son) over the weekend. I managed to muddle through on Monday by myself. I still feel lightheaded if I exert myself and diarreha has set in but other than that, i feel ok. I keep a blog on Caringbridge.com and posted on day 3 how lousy I felt. It definitely was not one of my more uplifting posts. I guess the mental part of the game finally hit me - REALLY this is my life. This is what I HAVE TO go through. But once I got through day 4 I felt better.
TINA - I'm right there with you on the meltdowns. I gave birth to twins back in Jan 08, 4 months into my pregnancy. After coming home from the hospital I kept crying wondering when the nightmare was going to stop and the babies would be back in my belly. I would sob for what seemed like hours in the shower so my then 2 year old would not hear me. Fast forward to now, dx one day after my son turned 1. I just held him all day and sobbed. Like the other ladies have mentioned - once I got a plan of attack and started tx, I started to get mad and a feeling or proactive came over me. I knew I was killing those BAST#$#DS. Hand in there. Vent anytime. We may sound confident and positive, but I'm pretty sure we have all had our cry moments.
Today I got my final of 4 drains out. YEAH. Boy are those things a pain in the ars!
Question for the group - How much water are you trying to drink per day? I have heard anywhere from 2 qts to 2 gallons. Since I'm not a water drinker - 2 qts is a lot. Opinons?
Thanks and hugs to all,
Michelle
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Deb,
I know - when they were describing the port the nurse said there'd be a bump that might be noticeable; after the tissue expanders I thought what's another bump:-) I took a pain pill last night too and it feels better...if I could just get the kids to play quietly for the day! Hope you feel better today. They said it's mainly the tube part in the neck that hurts because they do alot of manipulating to fit it in there but after 2 days it should feel much better. I have an echo today and the port is on the left, hope they don't have to go near it.
take care,
Carolyn
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Good morning Girlfriends! Or good afternoon to our girlfriends across the pond!
I woke up this morning at about 4:45, tee shirt and pajama bottoms thrown to the floor because I was having a doozy of a hot flash, thinking, "I really would like to sleep some more." But alas, I was wide awake. So as I pondered whether to laze in my bed for a little longer being frustrated about being awake, or just bite the bullet and get up (where does that phrase come from I wonder... huh), I thought, "Well, if I get up, at least I will have something nice to do. I can go online and check in on my cancer buddies." And that's what I did. So thank you all for being such a unique and valuable source of support and connection.
First of all, good luck CindyRN on your first Tx today! I think you're the only one starting today, but if there are others, then by all means, good luck to you too! I know you know this, but don't stop drinking all that water for a few more days at least. It really will help.
Second, Michelle, lisaattheshore, Lisbeth, Zenith, and libraylil (And any others I've missed), how are you all doing leading up to your Tx's tomorrow? Anything we can do to help?
My update... I think the nurse practitioner was wrong about my having shingles. I just don't think I do. First of all, the pain I'm having in my back (which seems to be subsiding a little each day) is not in the same place as the rash, which is on my shoulder/neck area). Also, the pain is muscular. Shingles brings on that unmistakable nerve pain that causes you to pray to any possible deity every time air touches your skin. This is not nerve pain. So I don't know what the rash is about. It's not going away, but I don't think it's getting worse either. I may call again today. I'm starting to feel like a pest around there and I'm only on my first Tx! (I hate feeling like a pest, and I feel that way very easily when it comes to calling my doctors.) I don't have a fever anymore. Mouth sores are still there, but I can deal with them now, with the help of my newly designated Oral Care Medicine Cabinet filled with fun-to-taste mouth rinses, analgesics, and a variety of application utensils. So should I call, or just rub dirt in it and wait til my appt. next week?
calamtykel: Yea for having no mets! Ready for chemo on Mon.?
Ann97: Just a suggestion about the half marathon, if you decide not to run in it, consider being an aid station volunteer. It may help you feel that connection to the running community we all love so much, even if you have to push your own training back a little.
Mmahle: Funny how doing housework can feel like such an accomplishment isn't it? I'm looking around me right now and considering flying you in from wherever you are for a few hours in my house!
Zenith: I like what you said about adjusting to reality. I share your philosophy. I believe that success (at least as we Americans tend to think about it) is getting what you want, while happiness is wanting what you get. Just my pithy little contribution for the day!
Hope everyone has a good day, and, as always, I look forward to reading more...
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Good Morning Wherria, you sound so good this morning!!
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Oh, I forgot. I have a few questions to place before the group.
1.) Top picks for lip balm??? Note: I do not want to smell or taste like a strawberry Skittle, nor do I want to look like someone sprayed my face with high gloss enamel. I just want to keep my lips from cracking open, and if possible, to get rid of this feeling like my lips are as thick as a cow's hide.
2.) Anyone else experiencing chemo brain yet? Yesterday, after getting my dogs' dinners ready, I put the now half-empty (ok, half-full) can of dog food in the cupboard drawer and the saran wrap I used to seal it up into the refrigerator! I knew something wasn't right, but it took a minute for me to figure out what that was. I'm truly afraid of this becoming a serious issue -- like, am I safe to drive? can I be trusted to make sure I've taken all my meds or to remember all my appointments? etc. When a friend called yesterday around 5:00 and asked what I had done all day, I honestly could not remember anything except that I had gone to a bookstore. The rest of the day was a blank. I've started posting little notes around the house to remind me of things, like to make sure I've turned the oven off, or locked the doors at night, or that I have everything I need with me when I leave the house. Anyone going through this?
Thanks
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wherria - For lip balm I recommend any of the Burt's Bees products. They are in the cosmetics section at most drugstores, Walmart, Target, etc. They have all different kinds, my favorite is the replenishing lip balm with pomegranate oil - it has a reddish tint so it gives your lips a tiny bit of color along with the balm. But they also have untinted ones and none of them have much of a smell. They have some that are glossy and some that are not. No comment yet on the chemo brain since I haven't started yet but I will say that my onc said to me "chemo brain is a real thing" and warned me about it.
Lisa - I haven't seen a rad onc yet either but was also just thinking that perhaps I need to go ahead and set up an appointment so that I can get scheduled to do that next. I had a lumpectomy so I know I will need to do rads. I guess I will ask my onc about that next time I see him.
I hope everyone is doing well today, good luck to anyone starting today!
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Hi Lisa--I met with my radiation oncologist last week. He mentioned that you have to wait about 3-4 weeks after end of chemo to start radiation. He said your body needs to recover before starting rads.
Thanks to everyone for sharing their stories and tips--helps me prepare for Friday.
Rachel
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Good morning all! Hope you all are good today. Welcome to our new members we have received over the past 24 hours! I am so happy to see this growing so nicely! We are all such good support for each other.
Wherria: a few things; first any rashes, the oncs say to call so you really should address it with them. They expect these calls. Secondly, you are totally like me in your fear of chemo brain and what we will do is arbitrarily classify every strange event as the onset of chemo brain and/or do things to cause ourselves to fear chemo brain is starting! It is my understanding chemo brain largely affects the elderly. Something for you to keep in mind...no pun!!!!!
On to more important topics: LIP BALM! Burt's Bees is good, I agree but what is excellent, but perhaps a little too fruity for your tastes is Lancome's Juicy Tubes!!!!! I am going to get another one today. They blanket your lips in unbelievable, unparalleled moisture. While I am at Macy's I will ask if they have an unflavored one and will let you know. Otherwise you can check online yourself. I am so addicted to these Juicy Tubes!!!!! I crave them!
Update from me, your fearless leader who now not so secretively has let you all know she fears chemo brain (all type A's fear chemo brain!!!!!!!!!!) : saw my new onc today and will have mugga, cat scan, pet scan, port and I am going to start somewhere around the 20th or so. The person driving this bus will finally join the passengers in their quest for victory!!
Midweek update: will be done by midnight! For all who started this week I dedicate AC/DC's "For those about to Rock"...we salute you!!!!!!!!!! For those who are Yankee fans, and that should be everyone (!), you should also embrace the Mariano Rivera assigned-theme by Metallica of "Enter Sandman" as we are going to SHUT OUT bc forever and send it off to never-never land!! Yeah, I like Metal but I also like Pavarotti...go figure!!!!!!
Your Fearless Leader!
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Coughing and nervous.
Hi all you ladies out there - I'm so happy to be here with you reading your stories and thoughts. I lack some of the medical and technical vocabulary, but I understand all that you write, but I might not be able to describe everything in correct wordings. Today I'm a bit vulnerable, my port has hurt a lot since it was put in, I have found it hard to sleep in my bed, because breathing hurt when I lie down, so I've slept for two nights tucked up on our couch with a lot of pillows in my back. I called the breast centre today, they said it was what could be expected. What I don't understand is that they didn't explain that more clearly before me going home, and that they didn't tell me what pain-killers to take. I don't like that I have started coughing now, - so afraid that I'll not be ready for my first chemo friday - not that I like it to come - but I do not want to have it put off either. I have already started filling up bottles of cold water, and is practising drinking a lot. Probably I'll stay home tomorrow to look after myself to be ready for Friday. All the best to you girls who will start the next days
Lisbeth
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Hello everyone, thanks ckptry. I think they minimize a lot when 'they' explain the port process. I'm better today although it looks like I got hacked up in a knife fight, and it is so so bruised. I slept in the spare room with pillows everywhere. But what can you do.
Do y'all ever feel like we got highjacked on the Cancer bus? Don't know where we're going or when we will get there. Some of the bumps are really bad, and they certainly won't let us drive. It's just a hell of a ride, and we'll all just hold on tight till the ride is over.
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Lizzy: re: chemo brain. I know what you mean about being careful not to assume every little slip of the mind or whatever is a result of chemo brain, and I will heed your warning, but part of my concern is because it was my friends and dh (Lisbeth, that stand for dear husband, just in case you didn't know that one), who started pointing it out to me, and they had never heard of chemo brain (I wish there was a different name for this!). A few days ago, my best friend said she'd been noticing that I was forgetting the strangest things, and the kinds of things that wouldn't ordinarily be easy to forget, like when we met for coffee the other day at noon and she asked what I'd done all morning and I couldn't remember. And my dh and other friends have said similar things. I think there is a real brain thing going on here (not that you said there wasn't). And I don't want to over-react, but I am a little nervous that it could become a problem in terms of day-to-day functioning. I talked to my psychiatrist about it, and he was concerned because I'm on several meds, and have had some other treatments, that impair memory also. So memory loss is already a medical issue for me. He said it's not worth the risk yet of taking me off any of my meds, but he told me he wanted to keep a close eye on it. And he said that because of my particular circumstances, I might be more prone to chemo brain and/or if I do experience short-term memory loss, it could potentially become a permanent problem for me. I was relieved that he took it seriously since some docs don't even agree that this is a real phenomenon, but I wasn't consoled by how concerned he was. He's not usually this open or explicitly cautious about things. Before I started chemo, while I was reading about se's and stuff, I admit, I kind of blew that one off, thinking that if the medical community couldn't even agree if it was real or not, then maybe at the very least it couldn't be that bad. But it's got my attention now.
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Cheers to that sentiment! I want a bus with 4WD!
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