April 2010 starting chemo
Comments
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Well ladies, just waiting to go in about 15 minutes for my 1st time. Rereading some posts to get some extra strength from you all and it worked!. Decided to get all made up and look beautiful for the last time....ha ha. Good luck to everyone else starting today as well. Cheers.
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Shygal, Caltex and Sara-
Good Luck today! Many Many wishes for a peaceful tx for you all. I'm right behind you on Wednesday!
Talked to my onc. nurse today and found out my onc has withdrawn me from the Beth Trial. My liver functions were on the edge of acceptable if I was chosen to receive the Avastin. He didn't want to risk it, so I'm out. Still on TCH x6 with the Herceptin for one year.
Feeling pretty good about the whole thing and it really backs up my respect for my Doc. Most of the benefits of the trial were extended follow-up tests of my heart function. My initial results were stellar so I'm not all dissapointed about losing that bene.
No port yet. I had a saroma develope near the area where my drains were, my Onc doesn't want me to go through any more procedures until that clears up so it's veins for me.
Off to start packing my Chemo bag!
Chemo-a-gogo, here I come!
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Thanks to all for their kind words and support. It is day 4 after my first treatment and I finally feel normal enough. Still don't like the smell and taste of most things (even my baby dog, poor thing) but getting through it. Had another SE to deal with last night but getting through it. It's hard. I wonder if the next one gets any easier? I just don't want to even think about having to go through this again. Support to all of those who are starting today and soon. Praying for no or little SE for you!
Kelli
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I, too, started my chemo on 4-7-2010 (so day 5 since). I've had no nausea or any of the alarming SE's, but I generally feel miserable half to 2/3rds of the time. When does it let up? This weak, shaky, foggy just AWFUL feeling? I am on AC/T - this first one was AC. I think the emotional part of it is hitting me hard for the first time too, the fear that I will always feel this way -- or, for sixteen weeks straight, anyway. I want to run away and never do it again. I can understand why some women just take their chances with the cancer returning. :-(
I also wonder if the steroids are really necessary or perhaps cause worse problems in some women rather than help? The worst part of this (best way I know how to describe it...) is this highly irritable, worst hangover of your life (w/o the headache) fatigue/weirdness. God, I hate it!
I have been heavily ingesting the water and trying to get a little exercise each day, but I guess because I see no light at the end of the tunnel I'm worried I'll feel this way forever and can't take it.
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Hey ladies, just peaking in from the, Starting Chemo. in July thread. I wanted to tell you all what a great group you are and how lucky you are to have found each other at this site. This chemo. stuff stinks but I know you will all do well. Know that when it's all done you will be well on the way to beating this disease. Stay strong and encourage each other when the going is rough.
By the way that picture of me was taken in August. I now have about 3 1/2 inches of thicker than before and grayer than before hair. All my hair came back except where I had radiation, under one arm.
Hang tough! and Pink Hugs.
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Well, days #3 and 4 after TX #1 were BAD for me.
I just started feeling better this afternoon. Days #1 and 2 weren't too bad, but yesterday and most of today I felt queasy, but never vomited. Had sore throat and mouth (no actual sores, thankfully) that is still bothering me a little bit, body sore and achy, but I was HUNGRY the whole time!!! Craving eggs of all things, and I NEVER crave eggs! And water tastes disgusting (although I've never been a fan of water, anyway)! Late this afternoon I just started feeling somewhat human again. I'm really not sure I can do that FIVE more times without losing my mind... Like Julia123 said, it's a lot like a hangover, but I didn't have any fun getting it... -
Ladies- I am just stopping by from the April 2009 Chemo and TCH forums to add my strength, support and encouragement for your chemo journey. I had 6 TCH and the rest of the year of herceptin. Also had rads and am on Tamoxifen. It has been quite a year.
But I want to say that while it seems so daunting and frightening in the beginning, it IS doable. You don't do all of it every day, it is just one thing at a time. It seems overwhelming when you look at it all at once, but one step at a time, it all falls into place. I always say the days go slow but the months fly by. I cannot BELIEVE I got my last Herceptin last week!
Sticking close together on this board will really help you. I could not have made it without the ladies on my board - and you will feel that way about each other if you stick close, post your questions, share your fears, tears, and victories.
I worked f/t and exercised throughout chemo. I stayed active and lived life. I was so afraid my life would grind to a halt during chemo, but it really isn't like that. You will have better days and worse days, but EVERYTHING passes in time.
Just a few things to share - one is something I haven't seen mentioned here. Your head will get very cold when you lose your hair. At least mine did. I started chemo in April and it was getting warm, but I slept in a soft knitted beanie type cap for a long time. That is something i would recommend you get. A scarf wouldn't work so well to sleep in. And then, when the hot flashes come, you can whip it off but keep it nearby so that when you get cold, you can put it back on. Oh the joys of sleeping during chemo!
Second, for you married ladies - this is HARD on the husbands too, whether they communicate it or not. So when you have a friend or family member coming over, tell your husband to go OUT and do something he enjoys - visit a friend, do a hobby, whatever. He will know you have someone there during that time and he can go out, relax, take a break from cancer without guilt. This was really good for my husband and we made it a routine - "Chris is coming over to see me on Saturday afternoon, why don't you go see Joe for a few hours and play guitars?" it worked really well.
Third - for you TCH ladies - I would like to invite you over to the TCH board. It is a very active board and has women in all stages of treatment. It was an excellent complement to my April chemo board, because rather than everyone going through things together (like you ladies are), it gave the benefit of veterans who were further along. So please come over and see us, ask any questions you have.
Fourth - for those of you who have ports - if they hurt or are uncomfortable, you WILL get used to them. I was horrified at the whole idea of one (it scared me more than the idea of cancer!) and it was painful for the first few weeks and uncomfortable for a while after that. But eventually I could forget it was there for long periods of time (days, weeks) and it is a HUGE advantage during treatment, especially if you get Herceptin for a whole year. I am having mine taking out on 4/26 - just made the appointment. Again, I cannot believe how fast this year has gone! And yours will too!! I know you don't believe it, I wouldn't have either if someone said it to me - but it really is true.
Be strong, be brave, have courage. DO NOT be afraid to lean on those who love you. It is hard for us women to not be the ones doing the nurturning and giving - it was very hard for me. But it was a good thing for me to learn. Others love me and want to help me, and this was my turn to receive.
Winston Churchill said "When you are going through hell, keep going." And I KNOW that you beautiful strong April ladies will keep going through the months ahead.
PM me if you have any questions.
In love, support and sisterhood -
Amy
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I adore Amy!
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Thanks, Amy, for stopping by...your words help a lot. Today is day 5 for me after TX #1 (AC) and it has slammed me. I felt sort of human yesterday, but the fatigue is overwhelming today...I feel like a limp rag. (My first day without steroids.) I echo toughmom38, drinking water is hard when it tastes disgusting. Ginger Ale and juices have become a substitute.
I feel like a wimp and wonder how I will get through the next 7 treatments...I can't believe some women work through treatments!! Part of me says I should take it easy on myself, but part of me says I need to suck it up! Maybe a little of both.
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Hi everyone. I did start today. My onc listened to my lungs and they were clear - and I haven't had a fever at all, so we could start as planned. She did start me on a Zpac today though just in case - which apparently might exacerbate nausea. My med questions were all answered. I was given infusion steroids, aloxi, emend, and ativan - all for nausea. I am to take one Emend tomorrow and one on Wednesday. She said that many people don't need more than that, but if I do need something tonight Compazine is what I should take. And she wrote me a new script for Ativan for home in case the Comp doesn't cut it. That one is better at night. AND, if for some reason those all fail, I am to call and they will prescribe Zofran.
All went well at the infusion, except my port wasn't cooperating and had a clog or something when they tried to flush it, so they had to send meds through to unclot - still didn't work, tried one more time and it was fine. Lucky thing b/c I would have been sent to have a scan to verify the placement to the vein. I did suck on lemon drops and drank a lot of water, and even ate a grilled cheese sandwich during the tx.
Came home and felt fine - walked around the neighborhood with my friend and my dog. Then got pretty tired and a little nauseous around 330. Tried to ignore it until about 730 and just took a Compazine. It is definitely helping. Learned my lesson and will stay on top of the meds as needed and not try to be heroic.
Hope you are all doing well tonight.
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Hi y'all:
I had my first treatment today. It actually took only a little over 2 hours and went quite well. No nausea at all (yet), but I'm feeling rather tired and have a bit of a headache. I picked up the extra meds for nausea prevention for the next couple of days. They hadn't told me I'd also be getting Neupogen (pre-filled syringes), so I'll go in on Friday to have them show me how to use them and make sure I'm doing it right.
But now I'm off to find something funny to watch on TV until I fall asleep.
I'll probably be able to keep up with updates to the list, but changes may be a little slower than usual.
Karen (caltex_catlady)
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Yes, thank you so very much Amy for taking the time to tell us we can make it and reassure us it won't last forever - your encouraging words brought tears to my eyes, because it is so frightening when you've felt like this for days for the first time and wonder if life is never going to be the same and that's where I am right now. And yes, I am learning like I've never learned before how to take only one day at a time and also to ask for help (my friends call - er, called me - Ms. Independent). :-) Neither lesson is going to be an overnight one, they are so ingrained in me, but I am having no choice but to learn them and learn them well or become completely overwhelmed. :-)
tpcjkk in Fair Oaks - it sounds as though your first treatment has hit you about as hard as mine has me. Here's a big hug, I know it's from a complete stranger, but just wanted you to know I understand! I am going to try and work through treatments, with some modification, but as noted earlier I have my doubts about the doability of it for the whole period at this early stage! Of your two choices, I vote for go easy on yourself. Now, of all times! A friend told me that today too.
And hello and welcome to this unfortunate club Saralmom and caltax_catl....the weirdest thing happened to me with my first treatment, I was starving, and yet, everything I drank and ate during it turns my stomach at the very idea of it now (even tho I had no nausea at all during treatment). I had just ordered a big box of the Tazo Zen green tea too! Now, bleh. I very much hope this is not the same for you guys! I do remember my onc saying I might react like a pregnancy to foods.
One of these days soon when I have more energy I'm going to post my diagnosis/dates/regimen..
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I dozed off for a while and plan to hit the hay early tonight, but I thought I'd add a couple more things.
Putting in the IV was one of my big concerns, since I'm not using a port. The nurse is a pro at this, though, and got it in easily. Let's hope that continues every other week for the next 16 weeks. They can put in a PICC line if I need it, but I hope we can do without.
For pre-meds, I got decadron (same as dexamethasone, a steroid), Zofran, and Emend, all for nausea. Since I'd been so nervous, I asked if there was anything for anxiety, so they gave me ativan. The nurse warned me I'd get very sleepy pretty quickly, so I took a quick trip to the bathroom with my new friend, the IV pole, while I was still awake. Turns out it took about an hour for me to feel sleepy, but I think I did feel less anxious. So if you need it, don't hesitate to ask.
After about 30 minutes, she started the adriamycin push, 4 syringes worth. They do it this way so they can be right there to monitor everything rather than just dripping it from a bag. I sucked on a couple of popsicles, since I'd heard that was a good way to avoid a bad taste and also to help prevent mouth sores. It worked for avoiding the taste, so we'll just have to see about the sores.
Then she hung the bag of cytoxan. It also took about 30 minutes. Then she ran a little saline into the IV for just a few minutes, and it was done!
During the cytoxan part, since it was lunchtime, I slowly ate a plain cheese sandwich and a couple of animal crackers. It all stayed down.
No nausea yet, although I'm carrying my "bucket" around the house with me, just in case.
I don't want to jinx it, since the big SEs can come after a few days. I have Emend and decadron to take for the next two days, and Zofran I can take also the next two days and then after that as needed. I'll let you know how it goes.
Hugs to everybody!
Karen
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Good day all, thought I'd share my 1st TX yesterday with TC (Taxetere and Cytoxan). Had my blood checked as a baseline (one small vial from inner elbow) and then waited to have it analyzed. Had a hot pack placed over my forearm to help with IV placement. Tried to start the IV and found out I have small veins. Nurse put in the catheter beside the vein and boy did that hurt. She didn't want to 'dig' any further so called the Sr. onco nurse, who did it painlessly in one try in another location. Started on pre-meds of Zofran and Decadron and then waited 1/2 hr to start on the Cytoxan. Did a saline flush after that and then we started very slowly on Taxtere which has a higher allery rate. The nurse gave me 2 ice-manicures as she called them. I thought this was to help eliminate/reduce the neuropathy symptoms but she said that hasn't been proven. The reason was to help eliminate the discolouration of the nailbed. Since I was on a slow drip (that they continued to increase) it took a long time and my fingers were freezing but they did give me a heated blanket which was very nice. A final saline flush for a few minutes and then I was done. Took 4 hours in total (in the chair and another 2 of other waiting/blood work) this first time, but she told me to expect 2 hrs next time.
Was sent home with Zofran and decadron for 2 days only and then have Stemitil (Prochlorazine) for anti nausea after that (Pharmacist was telling me that Zofran doesn't work as well after 2 days).
Interesting in that the Dr. ordered a "Magic Mucositis Mouthwash" that is mixed by the pharmacist - in looking online, I can see that there are many versions of this. This is to help counteract the dreaded mouthsores.
Overall, just feel hungover and "off" today on day 2, but know that day 3 is probably when the fun will be begin.
Thanks to Amy for her encouragement. It's greatly appreciated.
Have a good day to all our April sisters.
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Hello I'm new. Had a bi-lateral mastectomy last week. Going to doctor today to discuss chemo. Please add me to thread.
Thank you
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nkbk0108: Hi Nancy, welcome to the chemo thread. I put you on the list. Did you get your llymph node results back already? That will determine what kind of chemo you get. You may find, though, that your onco will want you to wait 4-6 weeks after your bmx to start the chemo. That's what mine did. I had a bilateral on 2/23 then additional nodes on 3/11, and my first chemo was yesterday. Good luck at the doctor's today.
shygal: I'm glad to hear you did OK, despite the IV issues. That's the kind of stuff that worries me, but my nurse did OK.
I was given an Rx for neupogen. No one had mentioned having to give myself injections before, so I guess I'll go back in and get a demo. Has anyone else had to give themselves injections? It kind of creeps me out, since I usually have to look the other way when someone else is poking me with a needle.
What's the Magic Mouthwash? I've been using Biotene or baking soda in water. I started on Day 1 because I really, really don't want to get the sores. I also sucked on popsicles while getting the adriamycin part of my treatment. I've heard that can help.
Last night, I woke up several times (about 12:30 with a little nausea, but since I wasn't sure if that counted as "Day 2" yet, I just had some crackers and water; then 2:45, then 5:45). Took my morning meds and now, at the ripe old time of 7:30, want to go take a nap.
Karen
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Hi Caltex_catlday, The Magic Mucositis mouthwash looks like it can be a combination of many things; each Dr. must have their own recipe they ask the Pharmacist to put together. Mine includes: Nystatin/Benadryl/Dexam....the label cuts off so not sure what that last ingredient is but it's probably Dexamathasone. Here is something I found on the internet that looks like it might be the same recipe.
A: Duke's Magic Mouthwash Formula:
1. Nystatin Suspension, 100,000 u/ml, 30 mL. or Nysatin Powder 3 Million Units
2. Hydrocortisone 60 mg.
3. Diphenhydramine HCL Syrup
q.s. ad. 240 ml.And, the Pharmacist said to use it to prevent the mouth sores so I have 6 repeats and plan on using it every 2 hrs.
Just noticed that my face is very flushed. No fever, but not sure what this is from...anyone else having that issue? The only thing I have taken today is Zofran. Thanks.
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Hi,
Karen, thought I'd respond to your question about Neupogen...I have been giving myself daily injections for 4 days now. I was meaning to get some instructions, but honestly, none are needed. The pharmacist said the best place to inject is the stomach. I just swab the area with an alcohol wipe, grab a little roll of fat/skin, and pierce it with the needle. The needle is very fine, so it should not hurt much. I did notice last night (after 3 days of Neupogen), some body aches. It's pretty manageable.
Shygal - I had facial flushing, too. I took my temperature, and it was only 97.7, so the flushed feeling is apparently not indicative of any kind of raised body temperature. I feel warmer than usual; I am the type that has to bundle up and wear socks to bed, but lately have found that I don't need the extra layers.
Hang in there!
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My upper chest was flushed for the first 4 days but my temp ranged from 96.8-97.5, never got any higher than that. Maybe the flushing was from the steroids. Today was day #5 after first treatment and I didn't make it to work until almost noon because of diarrhea and dizziness. Nurse told hubby dizziness is from not drinking enough fluids, but to me water tastes like sewage. Have switched over to Gatorade, hopefully will be easier to get down.
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Hi everyone:) I am so sorry to hear about those that are experiencing side effects this week(HUGS)!! I am day #12 post chemo. and feel great, so know it does get better. Like others have said just keep reminding yourself this is temporary--we can do it!!!!!!! Hang in there.
AMY-- Thank you for your wonderful post!!!
I had flushing on my chest for a couple days after chemo. I asked the nurse about it and she told me it was from the steriods. I think mine went away by the 3rd day.
Well, I had another TE fill today and I believe I am getting close to the finish line with that process:) I also am having tingling, some pain and itching on my scalp--I believe my hair losing time is here:( Not sure how I feel about it? I think I am going to buzz it in the next few days. Anyone else buzz their hair yet or experience hair loss? How did it go?
Hope you all have a restful and side effect free night!!
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Hi Ladies, I am on hold right now waiting on when my Chemo will start. I thought it was going to be April, but now it looks like May because my stomach has decided it doesn't like anyof the sutures used during my surgery the end of February and is not healing. We are on a hold to decide if they are going to go back in and re-open up the whole scar and put in a new type of suture or see if the body finally dissolves them. Will know more next week.
So if you don't mind, I am going keep checking in on you ladies and reading your posts so I can get a better understanding of what to expect when I do start Chemo.
Good luck to all of you on your Chemo journey!
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Chemo a go go starts tomorrow!
I'm planning a hair shearing party weekend after this. Just my hubby and a few very close friends...and a bottle of champagne... We're all a bit crasy and discussing interesting ways to "style" my hair before we actually shear it off. Should be a few tears...because I've always cried when I'm surrounded by my best friends and one of us is going through a tramatic time. But then the fun! Promise to post a picture if I can figure out how!
I'm nuts that way, If I can't see a bright side to something, I'll make one! -
Good luck tomorrow, Pickles!
I'm sorry you're having to delay your chemo start, LauraM, but you're welcome on this thread anyway. I read a lot in the March thread that helped me.
Karen
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hey girls been sick off and on bad headakes had chemo last thursday worked sat day time then sun. 3rd yesterday i felt grate so i did house work i guess im good tell next wen. im scared that the next one ill fel worse staying positive thats all we can do and trust in the lord.Blessings to thoughs who are starting and thoughs who have. we wont fel bad for ever and God never said anything would be easy.
ps i cant spell so over look my spelling lol
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Amy,
Thanks for your words about the port. I had mine put in on Monday and it still hurts and is a bit painful today. My veins are very hard to find, and I dreaded the thought of being poked numerous times with each treatment so I felt this was the best choice for me. Best wishes for continued success with your treatment and thanks for your advice. My chemo starts next week and I find it very helpful to read about what you other ladies are doing to get through it.
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Pickles - good luck with your chemo tomorrow. I actually started in March but still look in on this thread. I had my second chemo this past Monday and am so far doing good. Both treatments resulted in being a little queasy but I am able to control with meds.
I love your attitude about the head shaving thing - my husband and I have decided that if you can't find things to laugh at during all of this stress the alternative would be to just lay down and cry. He wasn't with me when I shaved my head but when I did the big unveiling to him I had my newly bald head piled high with about 5 different hats and toilet paper for a bow around my chin. My best friend sang a strip tease song as I took off the hats. We all cried when all the hats were off but my husband said that seeing me bald makes him love me more than ever since it shows my vulnerable side,
Good-luck to everybody just starting, If you haven't read the posts on getting through chemo in the chemo thread there is alot of helpful information in there.
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Please add me to this thread. I started chemo on April 5, had a bi-lateral mastectome on March 5 and the lymph node biopsy came back positive for 6/7. I had gone under thinking my lymph nodes were clear after a needle biopsy. I will be doing TCH every 3 weeks for 6 treatments, then radiation and Herceptin for one year.
So far, the side effects of the chemo have not been that severe, I just felt really out of it and a little nauseous for about 4 days. I have heard that the second treatment can really kick you rump and I want to be prepared for that. Has anyone had that experience?
My love and prayers to all of you...
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I start chemo on 4/26 and am very anxious about this. I will be doing TAC every 3 weeks for 6 cycles. I guess the unknown of how I will react my body will react bothers me. The thought of losing my hair bothers me more than the mastectomy does. I am struggling with not being the very active person I have been. I am reasured by other women who have gone through this process and go on to lead normal lives afterwards. I guess I am just plain scared. I admire all of your strength in tackling all of this. Michele
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Add me too. I start chemo 4/29 AC x 4 @ 2 weeks then Taxol x 4 @ 2 weeks. Then tamoxifen.
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jdootoo, I'm only on Day 3 of my first cycle, so I don't know how the second will go. So far, just slight quesy feelings a couple of times, mainly early morning, and quite a bit of fatigue. Isn't it unfair that in the second cycle you probably lose your hair on top of maybe having more side effects? Let's hope we all do better.
ichelem, I think a lot of women get more axious about the hair loss than the mastectomy. After all, it's the hair that seems to shout "cancer patient". I was more anxious going in for my first chemo tx this week than I was about going in for the bmx, and I'll probably continue to get anxious about the next unknown--the hair loss.
Welcome to the new folks!
Karen (caltex_catlady)
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