Starting Chemo Aug 09
Comments
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Good morning - Today is my Look Good Feel Better Class. Whoo Hoo!! Today I am still hoarse, mouth still very sensitive to anything but very bland food. I don't feel bad at all, as a matter of fact I feel great in every other way. I'll call the dr today after my class for something because it is frustrating. I didn't want to wear out my emergency calls on a Sunday, figured I'll need them later. My DH and I went to lunch yesterday and I got a panini that I thought was mild, but I could only eat a quarter of it my mouth really hurt. DH said it wasn't spicy, but I'm guessing the onions were what burned. So instead I ordered peach cobbler, which was delicious and ate every bite.
My hair is still shedding, but not bad enough to shave. Kayel-Welcome to the August Amazons - you will find a lot of support here. I am doing AC/T with the Avastin trial. I listed the generic name on the intro. My trial is a double blind so I won't know if I've gotten it until the 17th week.
Yasmin - Sorry to hear you're not feeling so well. That tongue thing is weird isn't it??? I did and will do exactly what you're doing on the bad days, stay home and get in couch potato position. Besides when the stomach is angry being close to the bathroom becomes extremely important. I hope the day gets better.
Gill - good idea. As a matter of fact I went over all of my crazy symptoms from 1 tx day last night in my book and made sense of it so that I can mention it to the dr. And...... because you reminded us of this I remembered one other symptom I forgot about.
Navymom - you're almost there..... Hope you have a great today and I'll be thinking of you tomorrow. Let us know how you do.
Seyla - I hope at this time next year to be planning a wonderful vacation.....
Donna - how are you doing with the new style?
Kristen - haven't heard from you in a while - all okay?
Hope everyone has a good day........
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Woo Hoo Jenn! You'll have to let us know all about the class. I'm signed up for Sept. 9. I'm sorry to hear that some of ya are not feeling well. Bummer!
I've got Gemzar #2 tomorrow and am still feeling incredibly well. Nothing bad, just a little tired on Friday night after a very hectic work week. Went home and crashed early, then felt fine the rest of the weekend. Cleaned my house, did my grocery shopping and cooked the meals for the rest of the week, and walked 3 miles on both Sat and Sun. Vegged out and watched football on Sat night. I don't even have the metallic taste thing going on and am eating normally.
My onco nurse called me this morning to check up on me since I haven't had to call her at all. She said "you're either doing really, really well or really, really bad and can't get to the phone!"
Keeping all of you in my thoughts and trying to send "feel better" healing vibes to you all. Keep the faith, ladies. We're all one week closer to being done with this.
Hugs!
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O.k. I read everyone's post as my 5 year old is sitting behind me and my 1yo is napping. Now I know how I will tell my 5yo what is going on when I loose my hair. I had a unilat mx with latissimus dorsi recon in the beginning of July and the 5yo did very well with it, but I was up and moving almost as soon as I got out of the hospital - having a baby around helps you get up and adam! I will start with chemo (TCH) once they can place the port in and get the rest of the CAT scans. I teach middle school so if I was going to loose my hair, I was hoping to loose it before the kids start back after Labor Day so I don't have to explain. Not sure it will happen, although I would like to think it wouldn't happen anyway!
Anyone taking TCH who didn't loose their hair?? TC is every 3 weeks for 6 tx. H is for a year.
I am already running on lack of sleep so I was not happy to see that many people can't sleep very well. I am dreading the chemo thing. I HATE having no energy as I am always on the run, but have to remember that at least I can do things in life! This will help me do things for a lot longer. We don't have family in the area at all so we will make things work regardless.
JanetH77: Did you get hair loss?
So this might have to be a good thread for me! probably the first one I will read each time I log on. Thanks!
Jenn
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Hey Jenn - Welcome to the August Amazons - we have a lot of amazing women here. It seems a lot of us have the same common theme in that the waiting for the 1st tx was the worst part. Once you get going you have the end in sight. Although I had a rocky start I've felt great the last week and have been on the go non-stop. I figured I'd enjoy each and every good day to the fullest and rest on the bad ones. However, as you can see from MaineCoonKitty- she's feeling great without any bad days. Everyone seems to react differently. Wow two little ones, that does keep you busy............
I went to the Look Good Feel Better class today and got tons of free makeup (chanel,bobbi brown, mac) and lessons how to tie the scarves. Today my first big clump of hair fell out in my hands as I was blow drying it and quite honestly I've been afraid to touch my hair since then. It's on the way out, next it'll be buzzzz time......
Off to eat dinner - hope everyone continues with good days.
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Hi all,
Thanks for checking in, Jenn - I'm fine, just checked out for a couple of days. I was basically 100% on Friday and Saturday and hit a bit of a bottom yesterday. I had flu-like symptoms, mostly very achy, and slept most of the day. Is anyone else experiencing such swings in SEs? Basically the only consistent SE that I have had is the horrible taste in my mouth.
Jenn - glad to hear that you're feeling well (except for the mouth, of course). My Look Good, Feel Better class is on the 24th and I'm looking forward to it.
Jennsdogs - I'm on TCH (3x6) as well and had my first tx last Friday. I've been doing great for the most part and have been exercising and working ever since. It's doable and you'll be fine. As we have all said before, the anxiety over the first tx is worse than the tx itself. As far as the hair loss, not yet for me (I'm on day 11), but my onc assures me that it's on its way out. I'm ready and actually anxious to get it overwith!
MCKitty - so glad that you're doing well. Ride the wave as long as possible.
Donna - hope your cut on Saturday went well - we were all with you in spirit!
On another note, I was contacted by my cancer center today to enroll in a study that they're conducting that is funded by the Lance Armstrong Foundation. It is to understand the relationship between exercise and the chemo experience and involves meeting with a personal trainer 2x week for 10 weeks! Free gym for 10 weeks . . . sign me up!
)K
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Thanks for letting me join. It feels better to read everyone else's and know you all are doing great. I know it in my head but then worry all night long! Exercise is definitely helping me these days! I used to hate yoga as it was too slow and now I love it!
Kristin: I would love to get on that study for exercise! Sounds like what I need, no doubt! You will have to let me know how you do with the hair loss - sounds like we are on the same tx. Did anyone ask you to be a part of the BETH Trials by any chance? I was asked but I am not interested - too scary of side effects for someone as young as I am with small kids!
Jenn3: Thanks for the encouragement! What is the LookBetter... class. Is that only in your area or is it all around the country?
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Hi all you August Amazons !! A Triple J just stopping in to wish you all well. I had my 2nd TX (A/C) today. All went well. Finally had to buzz my hair today. Couldn't stand it falling all over any longer. Someone mentioned that SE's seem to be different for everyone, that is so very true. For those having little or no SE's enjoy and be thankful. For those having it a little worse remember it will all be behind us before long. I tell myself all the time ( No matter how bad It might be for me someone has it worse) so I count my self lucky. I also count myself very lucky to have all of the Triple J's and August Amazons for support. I have run my mouth enough so will say GN GB. You all are in my thoughts and prayers. Try to keep smiling!!!!
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PS Shelton: Thanks so much for your reply. No, I don't have a wig and I really can't stand things on my head but will probably get one just in case. Other than that I will probably just wear hats. I can't figure out how to tie those long scarfs but I do have one. Thanks too for your helpful suggestions. I will get some Propel tomorrow. I start my chemo in the morning. I'm really at peace with it for some reason today. Yesterday I hit the wall and cried for an hour or so. My baby left for college the day before which really upset me plus my mother has Alzheimers and her and my dad who is 91 are trying to still live on their own and they need a lot of help. For some reason it just all got to me on Sunday. I think I'm ready for this to begin.....6 treatments ever 3 weeks of CMF. I have a lot of hair so if it only thins it shouldn't be that noticable. I was dreading losing mine even though it isn't even close to being as beautiful as yours is. Again, thanks for your reply and I hope your chemo gets easier on you. Take care and God Bless, Pam
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Good Morning - Getting ready for my port placement this morning. Appointment with my Oncologist tomorrow to finalize my schedule for my treatment. Appointment for a wig fitting on Thursday... I think I might be able to go to the beach by the end of the week!
Jenn3 - Glad you are feeling better. It seems to me you found a balance in all of this.
Donna - How was the haircut?
Krintin09 - I would love to enroll in your study. Free trainer, Wooooaw! I'm still trying to rebuild my flexibility, strength with my arms since my BL mastectomy!
Jenndogs - Welcome to the group, I have two boys (4 and 6) and life is very hectic right now. It was a big deal for my son yesterday to buy a Batman backpack... they keep you smiling.
Got to go. I'm typing this with NO coffee... Bib hugs to everybody, Manue.
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Good morning ladies! I'm feeling really good lately. My mouth isn't even sore anymore. My head is itchy though and every time I touch my hair, more comes out. I was upset about losing my hair the other day and I just thought about my mom. She was bald twice - once for brain aneursym surgery and then the last time for her uterine cancer. She hated it but was so strong. That gave me some strength and I haven't been upset over it since. I'm still not looking forward to it though! I just keep thinking about when this will be all over when I get stressed and that helps.
PamsPromise - Good luck today! I'll be thinking about you but I'm sure you'll do great. It feels kind of good to have it actually happening instead of thinking about it and waiting, doesn't it? I'm with you on the wig. I don't want one right now but I'll be getting a lot of use out of my hats and scarves for sure.
Mnikityger - thanks for the encouragement!!
Hope you are all doing well today! Hugs to all!
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Kristin09-The same thing (TMI) always happens to me after my treatments. I know to stay close to home or at least near a very clean potty. Wow, you August Amazons sure have alot of post!!
A quick note on the hair loss. For me and for many others, we lost the downstairs hair first. I know TMI! That came along with the tingly, like a sunburn feeling, on the scalp. Then the small strands of hair and then the globs of hair. In between treatments the hair come back. Mine is almost a 1/4 of an inch tall now right after my 3 treatment. But my doc said it would also fall out. I'm determinded to prove him wrong. I am testing it on a sticky lint brush.
Neulista shot- Some docs. do it in the office some let you do it at home. I'm afraid I am way to chicken to do it myself. It is a short needle and goes in very quickly but I'm not one to like needles.
Kim-09 Check with your Doc. before getting in the pool. Mine said no swimming while on Chemo. and for goodness sakes wear sun screen.
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Good morning August Ladies!
My treatment starts tomorrow morning and I have such mixed emotions as all of you have had. The waiting has been so hard but now that it is here I wish I could wait a little longer. This has been such a long wait for me to begin with (Since original dx in Feb!) What have you found to be the best items to take to treatment?
Jenn3- I am also in the double blind study of Avastin
I am going wig shopping again today. It sounds like alot of you have decided to forgoe the wigs. Shopping for a wig has been alot harder than I thought. Synthetic sounds great except that you can not cook in it or be near any heat so I feel like human hair would be better, especially with the holidays coming. Anyone have feedback on one type versus the other? I do not want to hide from the cancer but just feel that with my children going back to school and me being in and out of school so much that I would be more comfortable with "hair". I have twin girls that are 8 and going into 2nd grade.
Does anyone have any skincare tips. I know the tx is very drying to the skin
I am going to sign up for the look good feel better class. It sounds awesome!.
Have a great day and I hope everyone feels great today!
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Hello every one, and welcome to all the newbies.
I have Tx #1 TAC today. Feeling nervous but also feeling prepared with good advise from all of you on this thread. Good luck to my fellow starters today.
Hopefully will be back on line later to share how things went.
Navy
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Good morning - Well yesterday I lost a clump of hair while drying and noticed that if I slightly tugged it came out so I left it alone the rest of the day. This morning when I was wetting my hair handfuls came out and I'm finding hair all over the floors. Ugh...... I believe it's time to get it over with. And..... yes I'll give TMI - down under has been falling out like crazy!!! I called my closest friend and she is going to try to help me do it today or tomorrow. My daughter is having a hard time with it, she cried the whole way to school. I guess the prospect of seeing me w/o hair makes it more real. My tongue still hurts and has a film on it at differnt times of the day (weird), but I have a voice - whoo hoo!!!!
Karen - Glad to hear you're doing better and that the mouth sores are gone.
Manue - sounds like you have a busy week - I'm sure you'll do fine with the port placement.
Kristen - Glad to hear you're doing well and sorry that you had a bad day. The study you've been asked to join sounds fantastic - free gym-yessssss!!! I'm still walking the dogs in the morning and when I can take a second walk in the evening with my sister and/or neighbor.
Jennsdogs - Look Good Feel Better is a nationwide non-profit organization that shows women how to apply makeup and care for their skin during chemo as well as ideas with the scarves and hats. Makeup companies donate makeup, which you are given at the class usually valued @ $200-$300/bag. www.lookgoodfeelbetter.org
Kayel- I do have a wig that my mom bought me, but don't think I'm a wig person and may donate it later. Besides down here the weather is warm into November, sometimes December. I don't know if you saw the early post, but if you email laurie@franceluxe.com and let you know you are a BC patient she will send you a free scarf. Her scarves are beautiful and she just sent me an email to let me know my new scarf is in route along with a band to help hold it in place. Can't wait.
TIP: Yesterday a lady at the class told me to use a net from the wig shop under the scarves during warm weather. It helps hold the scarf in place and is cooler than the caps.
Manue - Good luck with the port placement, I'm sure you'll do fine.
NavyMom- I'll be thinking of you today - let us know how you do.
Triple J's - thanks for popping over, it really is good to hear from ladies one step ahead of us. I know it gives me something to look forward to. I love reading your post..............
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Good Morning August Amazons,
Day 5 since my 1st chemo treatment this past friday, and I am feeling well. I had lots of energy up until yesterday morning. Since then, I'm feeling sleepy all the time. I also have this numb-tongue thing going on. Other than that, I'm hanging strong. I'm at work today, able to work at my own pace which is slow slow slow.
It's been great reading everyones posts, hope everyone is ok today.
Linda
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Hi Ladies,
I am glad all of you are well. I had a rough couple of days. I got a serious sore throat and thrush on Sunday evening. Yesterday I could barely swallow liquids. My Oncologist called in diflucan for me. My tongue is still white and my throat is still sore but I can eat and drink better today. I am so sick of my stomach aches. Everything I eat decides to turn to liquid. YUCK!
Karen - I am glad you mouth feels better.
PauldingMom - Thanks for the heads up on the hair loss starting downstairs.
I feel a little spacey as I hadn't even considered hair loss down there. Jenn3 - I am happy to hear you have your voice back. The sore throat sucks! I am looking forward to the Look Good Feel better class. I am scheduled to go on Sept.9th. I am sorry that your daughter is having a tough time with your hair loss. Poor thing..
NavyMom - I hope your first treatment went well.
Have a wonderful day everyone. Hang in there!
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Damn!
No Gemzar today for me. My white blood count is way low and the onc called in a Rx for 5 days of Cipro for me. Although I still feel great and am not running a temp, they think I might have picked up a low-grade infection somewhere and won't give me any chemo this week. That means I get a week off, but damn....
I did have some stomach cramping last night and some diarrhea but thought it was just because I made homemade spaghetti and meatballs over the weekend and ate more than I should have. I was up a couple of times last night, but took some Imodium this morning and that seems to have put a stop to it. Or put a "stopper" in me! My RBC is still kicking ass and everything else is good, but the WBC is way low.
Onc said if I get this Swine flu that's making the rounds, I'll be in the hospital, so stay away from crowds, airplanes, and salad bars, ladies. She says there is more bacteria on the lettuce in a salad bar or a buffett kind of restaurant than there is on the restroom floor.
Hope you all are feeling good and taking it one day at a time. Take care of yourselves, ladies.
Hugs!
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Yasmin!
Sorry to hear you've had a rough couple of days. Feel better, hun.
You're going to Look Good, Feel Better on Sept 9th? At Riverside? Me too!
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MaineCoonKitty - How cool, we'll be at the same program! I look forward to meeting you.
Take Care,
Yasmin
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Manue: How did the port placement go? Hopefully, it was all good. Do you know if you can swim in a pool with it? I will get mine at the beginning of next week - I don't even have to go into the hospital. YAH!
Jenn3: I called a few minutes ago for the Look Good Feel Good class. I just had to leave a message and hope they have room for me! :-) I am sure it is hard on your daughter, I fear that with my son, however, he is only 5 and may not even care! He is starting kindergarten this year, I hate to take him in like that... BUT I am thinking that I may loose my hair until the next week? Just a thought.
Off to ice hockey lessons with my son! We get to skate together for 1/2 hour before his class. I forgot how much I loved ice skating - it had been about 15 years for me!
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Hello Amazons
I am home a feeling quite well. Treatment went as expected. I have no complaints as of this moment. Drinking lots of fluids and taking my compazine and zofran.
I got a chuckle from the "downstairs hair" tips. Ah, what women can laugh about!
Also a good warning about salad bars and buffets. My Dr. also discussed staying away from movie theaters and sit in the back pew at church because there always those that will be coughing or sneezing and you don't want to be sitting right in front of them. At least you can excuse yourself if you are in the back.
Good luck to those with up coming port placements. It was a breeze today not having to be stuck for vein access.
I go for my nuelasta shot tomorrow and then a muga scan.
Will be back on line tomorrow. Have a good night all.
Navy
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Hi AUGUST AMAZONS !! Noticed allot of discussion about wigs, hats, scarves. Let me tell you what my mom is doing for me. She went and bought all kinds of material and has been making me scarves. She made one for my favorite NFL team, a couple of Halloween ones, a red hat one, and then a couple of regular ones. Am sure when it gets closer to Christmas she will make some Christmas ones also. We didn't choose this journey but we might as well try to have fun with it. Good luck to all
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When making your own scarves I have found that about 20" wide and about 2 and a half yards long works best for my head. I am going to taper the ends down on the next one I make. Off to hunt down some material for Chicago Bears. I know our local store doesn't have any.
Ladies, please check out TLCdirect.org for wigs. The prices are very resonable. -
Hi Ladies,
Glad to hear all the good regular news that everyone is still having a good life out there. We can't emphasize enough how important it is to keep going. All of our children sure keep us busy and smiling. Funny about the hair, some kids are OK with it and others really upset. My son said he didn't like bald people! But he did enjoy trying on my wig. My head is still itchy with a few hairs coming out but overall the hair is hanging in still. Tomorrow is week 4 so that will probably do it.
So my FIL passed yesterday AM at 5. Thanks for all the good wisehes. My poor DH. He is doing well but with his dad and me it is a big weight. This Friday will be the service so it will help everyone start to adjust and move on. We are all thankful that he died quickly and peacefully-his health was very poor already. So I am being strong for DH and he is being strong for me. What a team!
About salad bars and pools. My nurse also said to avoid buffet's in general, which makes sense. She said swimming was OK in a private well maintained pool but public pools were a no no.
MCKitty, sorry you aren't doing well lately. Hope you come around quickly.
Kristin, wow, love that program you are in. What a great study.
Jenn, you are doing a great job staying strong and tough despite all the SE's. Keep your eye in the goal, this is only for a while. Thanks for your great updates. We have a huge group now so having you keeping up is great.
Glad the start went well for the latest group. And hang in there for everyone going soon. The anticipation really is the worst. You have to respect the psychological aspect bc but you have to fight giving in to it.
Have a great day everyone!
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YoYo44 - I am sorry for your loss. Hugs and prayers to you and your family.
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Good morning ladies,
I am feeling well this morning except for the difficulty sleeping aspect I am doing fine on Day#2
Yoyo sorry for the loss of FIL. Stay strong, this will be a difficult week for you and DH for sure.
Pauldingmom-I live in the Chicago land area and can get you Bears fabric and bears anything else.The stores are loaded with it. I would be happy to buy what you want and mail it to you. Just let me know Ok? We can PM addresses if this works.
Even though my house is a Green Bay Packer house I would still do this for my fello Amazon sister! I too am making scaves, some from a pattern others free hand and Yes in deed I already have my Packer Backer scarf done! My US Navy Fabric is next to go on the Sewing machine.
Have a great day everyone
Navy
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NavyMom - I am glad you are doing well. I am sorry you had difficulty sleeping.
I have a silly question. How do you count the Days after treatment. Is the day tx is given Day 1 or does Day 1 start the following day?
Thanks!
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yasmin - tx day is day 1.
yoyo - so sorry for your loss.
Off to tx 3 today and the look good feel better class.
Have a great day.
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I think I have to tell you all about my port pacement - Got to the hospital at 7:30am. The only complication I had was getting the initial IV in for blood and antibiotics BEFORE the procedure. As usual, my veins are very small to begin with. On top of that, it was freakin'cold there (sorry about the language) and they wouldn't let me have liquids since the night before so my veins were extra small because I was so dehydrated. I went from the nurse to the head nurse to the IV nurse to the IV head nurse... They couldn't find my veins so they decided to cover me in hot towels to get my blood flow going (head to toes) - Kind of like a SPA - ahh, if only it was! This was very funny, I had to laugh... I felt like a big warm present!
Jenndogs - The port placement was easy for me, only local anesthesia and they didn't have to sedate me. I have to wait two weeks before to submerge myself into water. They put some kind of glue on the scar that have to dissolve by itself. I was driving today with no problem.
Yoyo44 - I'm so sorry about your lost, you have to deal with so much already. Stay strong, big hug to you and to your family.
NavyMom - Are you a Green Bay Packer fan? My husband family is from Chicago so it's all about the Chicago Bears! I can't believe you already have your Green Bay Packer Scarf!!!!
Goodnight, Manue, -
Hi all
I am Tania from NZ, I am having furher chemo and start again on the 27th August. I initially started chemo (AC) in May 2009, then had masectomy surgery. Had the confirmation today I have further chemo from the 27th. I have great support from the May Marvels so will now participate with the August amazons. I found these threads amazing support on my first adventure on chemo.
I was very lucky my first session, I had minimal SE and was able to continue working full time. My cancer responded very well to the chemo also. Had the head loss, but was able to remain positive over it all..... I am nowhere as anxious as I was first time, I am starting new drugs CMF regime, this time around and just hoping it goes well.
I look forward to getting to know you all.
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