Chemo June 2010
Comments
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tell me more about this "tatooing" ....
I assume it's a temporary marking as to where they do radiation?
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ginger- Nope, they are not temporary. Some women decline them for religious reasons. I think they just look like freckles. As I understand, they "mark" the boundaries of the radiation field. Then the technician lines up a shining light on the area to be radiated. It has to be very accurate. I think the reason they give you permanent freckle tatooes is because once radiated, they can NEVER radiate this area again (I don't know about chest x-rays). If ever there was a recurrence of BC, they would know where you had been radiated before. I love my Rads Onc. he's smart, cute and funny. I'll try to find out more and share.
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DesignerMom...I actually wanted to mention Neulasta to you a while back but thought I wouldn't interfere with your regimen.You seem to have a good relationship with your MO and have things under control. But yes, maybe you should consider Neulasta. It has kept me afloat and although it has some SEs, none are as bad as the chemo, in my opinion. My MO warned that it could cause flu-like symptoms. I got mostly aches and pains, both bone and muscle. Didn't really know what was from chemo and what was from Neulasta. When he saw how low my WBC was 8 days post the first tx he immediately gave me Nuelasta and then gave it to me 24 hrs after tx for rounds 2, 3 and 4. Had CBC run 8 days post each tx and after 2, 3 and 4 the WBC's were up and fighting infection! Don't know what would have happened to me without it. Others may not agree, but I'd say maybe call your MO and discuss it more. Neulasta isn't cheap but it is supposed to work best among that type of drug. Bon
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ah, ok .... thanks DesignerMom!
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Sorry to hear some of you have been so ill. My prayers are with you.
Is anyone planning a treat for themselves once they are done with chemo. I want to do something nice and not too expensive, But what? Any ideas?
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Ladies:
I"ve been reading about your SEs and feeling bad. I had my third (DD) Taxol last Thursday and it went way better than the first two. Not sure why - but they did cut the steroids by 2/3 and they cut the Benadryl in half and let me take it orally.So the drip was shorter and I didn't have the fatigue and illness that I had experienced the first two times. (I was also better rested, thanks to no steroiids and using sleeping pills - and I think that helped a lot). I share this hoping it will help some of you. My pains have not been horrible, but they are getting worse, and I am taking ibuprofrin in the day and Oxycodone at night - and boy, does that help me get a good night's sleep! Unlike most of you, I am facing surgery as my next step - I hope a lumpectomy. I am learning a lot from your preparations for radiation - which I will have later this fall. Anyway, most of us have survived this hell of chemo,so let's congratulate ourselves and think for a minute how FABULOUS we are!!
Toni
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Joan, I will probably go to Sanibel Island, FL once treatment is over with. I've always had a sense of peace and serenity there. My brother lives there & we stay with him. My kids and I (plus my sons girlfriend) went two weeks before my mastectomy surgery - it was perfect timing and prep. We shall return for a celebration vacation early next year I hope.
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Can anyone in the group who is having neoadj chemo answer the following questions for me please:
1. How long did you wait after chemo before surgery? my onc says no more than 2 weeks, but my surgeon says he wants to wait 5 weeks. i'm not sure what to do...
2. How long did you need to wait after surgery before starting rads? Just trying to work out when i might be able to start getting my life together again...
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trusting-Oh my! What you have been through girl! That Taxotere sounds nastier than the "red Devil" Adriamycin! Hoping and praying things get better--my prayers are with all of you having a tough time!
Bon-My rad onc told me to wait 2 or 3 weeks after chemo to start rads. Its up to me, depending on how I feel. He's being very nice to me because I had a horrible time with rads last summer.
Dmom-thanks for the prayers
I agree, you should get a neulasta shot. My onc told me it has to be given at least 2 weeks before the next chemo. If its a shorter time than that, you can get a neupogen shot--actually its usually a series of 3 shots, 3 days in a row. Both can give you bone pain, but its usually managed well with otc drugs.As for the tattoos, they are tiny, like freckles. I can't even find mine from last year. (they are on my lower back and hips). I've heard they can do them with permanent marker if someone objects.
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hehehe,oh thank you all im feeling better now, only a few tears lol. you have all been so great helping me. i love you all.. we are all almost there,
to think we started in JUNE, wow!! hehehTrusting, i am so sorry, how scary, that is my worst fear is my blood counts and fevers, im so glad you are on the mend and i will pray for you, watch that temp like a hawk, or anything different, dont take anything to mask a fever!!! call the DR every hour if you need to!! get rest!! you will get through it, we have come so far!!! ill be thinking of you!!!!
Tmarina, i to will be going back to Mondays,
im so thrilled your almost done, and the girls starting rads, they made it!!!hehe i love it.... i think ill be the last to finish chemo, second week in November, then a lot to be thankful for on Turkey day with my sis and my kids,oh and hubby, lol -
VICKY - I didn't see you post after you said you were going to cancel your last treatment.
DON'T CANCEL YOUR TREATMENT!!!!!!
This is coming from another Triple Negative girl. Chemo is one of the only things you can use to combat triple negative breast cancer! I've been diagnosed twice with BC this past year. TNBC is sneaky and it grows fast! I have a friend who's had it twice, too. I don't mean to scare you, but having that last treatment is really important! We want you to beat this cancer!!!!!
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vicky, one more honey, think of what you always tell me, I know you can do it!! put those BIG GIRL PANTS ON, and tie a rope around them to keep them up if you have to!!!! dont give up, you would give me hell if i did, love you lady!!!
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Okay girls, for some reason I'm in some irritable mood tonight. I was fine and then watched this stupid show on TV (Bachelor Pad - don't make fun of me). Anyway, it was a really dumb show and I thought about how much time I wasted watching the series. I made my DH erase it from our taped shows. Maybe I'm annoyed that I have chemo tomorrow? Maybe it's because I ate some junk food today and feel guilty about it? I have to fit into my dress for my sister's wedding, so maybe I'm putting pressure on myself to keep the weight off? Maybe it's my mom's cat fighting with my cats every hour? Maybe I'm annoyed that I didn't go to the store to get my chemo foods??? I actually had a good day at work and got some stuff accomplished. I don't know why I'm irritable!!!! Help!!!
My aches and pains have subsided, but now one of my fingernails hurts and I feel like I have arthritis in my hands. Every day I have a bloody nose. Nothing earth shattering, but a little bloody nose.
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Kittycat- I think irritable is totally normal. At this stage of the game I freak out before every doctor's visit and proceedure. I reall think the meds and just knowing what might happen will make anyone upset! Go ahead and get ticked off.
Vicky- We love you, hang in there don't give up.
Trusting- Hopin you're feeling better.
Ginger- Sanibel sounds wonderful. That's one of the places I've wanted to go.
tmarina- having done the big C twice, your strength and info are invaluable!
Had to drop off my daughter's inhaler at school yesterday and ran into alot of people I know. Got the " you're so brave, you look so good, your good attitude will cure you, i'm praying for you" stuff. Part of me soaks it up and part of me gets angry that these people can say these little cliches to me and then get on with their lives.
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Oh, Joan...I know how you feel about the little pats and short phrases that people say and then go back to their lives without cancer. But I've come to feel that it's better than having them ignore the subject and I'm not sure I'd do much better if I was them, confronted with finding something to say...until this experience with my own cancer. I hope now I'd know to offer help of any kind...even just an ear or a ride or a plate of cookies. I hope I've learned that a gesture of understanding is somehow healing. You know, a few weeks back I was resenting a friend who phones me every day from 1200 miles away. She rattles on about her daily activities, her travels, her plans. I found myself being angry that she was having a life and I am having cancer. Then I realized that I told everyone early on that I wanted them to tell me about their good stuff because I needed to live vicariously this summer. I mean, phoning me and getting on my pity-me bus wasn't going to help me get through the rough spots...I wanted good things to focus on and I got them. Right now I just say 'thank you' to whatever someone says about my appearance or my chances of a full recovery. This week someone even commented on my "cute little round face from the steroids". It doesn't matter what they say...it matters how I feel and I'm trying to feel strong and determined. My prize at the end of this cancer stuff is getting back a life that doesn't revolve around doctors and tx and meds. I'm looking forward to next summer when I can enjoy the sunshine and feel normal again..whatever that is. I wish that for all of us. Here's to the summer of 2011 when we can have a reunion here and toast our collective success.
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kittycat,we love you, its prolly the up coming chemo, Like Bon says, here is to summer 2011!!! it will be a great one!! we are almost there and we should have some hair back
no more wig for me, i cant wait, they r hot!!! i need to change my pic cause this what i looked like in june, now i look different with my wig, have a great day ok your in my thoughtslove Chey
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kittycat- Yes, yes, and yes. All reasons why you might be irritable. Are you still on steroids? That can contribute too. I know how you feel about stupid tv shows. The reality shows are truly irritating. I don't know anyone like those people and I don't want to. One of my goals when I finish treatment is to turn the tv off. As we all know so well, time may be limited, I don't want to waste it watching someone eat bugs! My son and I have been following the "America's Got Talent" series. I LOVE watching these astonishingly talented entertainers, so passionate, so hopeful! We actually vote! Jackie Evancho, the 10 YO opera singer just blows my mind. She sounds like what I would believe an angel would. The first time my 11 YO heard her, he remarked "do you rent or own those wings, you angel, you"! Here's link http://www.youtube.com/watch?v=SKhmFSV-XB0
Okay, after all that talk about RADS yesterday, guess what I did? I totally forgot my Rad Onc appointment! I am mortified as it is SO hard to get in with him. I am hoping they can reschedule before my simulation next week. Well, I'll just blame it on chemo like everything else!
I'm putting an e-mail in to my Onc about the Neulasta shot. I would be SO upset if I couldn't have my final chemo, just want this part of the ride to be over now!
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kittycat--. hope chemo is going well for you today! you had many reasons to be irritated! Try and let go of those things you can't control. Just take care of yourself right now.
Dmom--Bummer about the missed appt! Hope you can get in soon. Let us know what your onc says about the shot.
JFV--> During the school year I try to get in for a visit now and then. I go when I know many of the paras are having lunch. I get lots of hugs and everyone seems happy to see me, but then I wonder why I only hear from a few of them when I'm stuck at home feeling lousy? I try not to think too poorly of any of them. I wasn't much better before cancer and like Bon said, I hope to be a much better person in the future, helping out when someone needs me! I DO get irritated at family members who sort of disappeared after my initial diagnosis. I expected more from them--oh well! The ones that stuck around more than make up for the opnes that didn't!
No sleep last night--even after taking Ambien! And I got my nice red "steroid flush" going! Have to go in this afternoon for the Neulasta shot. Thank God for no nausea with this chemo!
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Okay, my Onc called back and sort of said "I offered you the Neulasta and you flat out said no". I don't quite remember it that way, but perhaps she needed to explain the need more if I did. The long and short of it is that she says Neulasta and Neupogen shots only work if given 2-3 days after chemo. So they are not an option. I finally got a straight answer on what a "normal" white count is (3500-8,000). As mine was 900 last Friday and then I had chemo, it is certainly scary. I guess I will just continue to be careful and rest....and pray.
Tina- I swear you girls have as many SE from the steroids as from the chemo. Bet you will be happy to be done with those! I hope you have sweet, LOOOOONG dreams tonight.
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Trusting, I was hospitalized last week with Febrile Nuetropenia and it's scary. It was after my 2nd Docetaxol. I saw the replacement onc yesterday (5 hr. drive) and she is decreasing the dosage by 25%. I will also have to get a neupogen shot afterwards. She also sent me for another CT scan of my abdoment (2nd in a week) to make sure it is healing. Chemo this week was cancelled and I have to drive to Winnipeg again next Tuesday to see her before she oks the next chemo. I really like her much better than my regular onc and glad she will be there until I finnish chemo. I too am on the constant bleeding nose train. Between 2 abdominal xrays and 2 abdominal ct scans in the last week, I should be able to read by the GLOW of my belly button at night.
Love and hugs, Mimi
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Hi Ladies! Boy, y'all have been through the wringer while I've been away! Good thoughts going to all of you. I was away at a dog show over the weekend, actually I was the chairperson, it felt good to take on a major role in something and get it done!
I agree with Bon re: Neulasta, I got it every time, it boosted my WBC through the roof 1 time (18 when high end of normal is 12), but it made me feel so much more secure as I was terrified of getting an infection.
Bon, I started rads today! 16 days from last chemo. It was.............freaky. I just closed my eyes and waited for it to be over, 1 down, 20 to go. I got my simulation and tats etc right after chemo #3. I would NOT describe 1 of my tats as like a freckle, more like a blackhead! Right in my cleavage (or at least where my cleavage would be if I had any). I want it removed once I'm done with rads. The other 2 are not real noticeable,
Julia
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DesignerMom...the first time I got Neulasta was 1 week after the first chemo tx. I went for a blood count and when they saw my WBC had dropped so much, they gave me the Neulasta right away. By the next time I had chemo two weeks later, my WBC was back up to 14 and it never tanked again.
I had my radiation oncology consult today. I'll be going for the staging where they make the 'mold' and mark my skin on the 17th and start the treatments sometime the week after. I'll have 33 treatments over time. The goal is 6and 1/2 weeks but the RO said it doesn't matter if it takes longer. That gives me some latitude if I need to deal with something for my Mom one day or have a client that I really need to work with then and not later. He said the two universal SEs are fatigue and burning of the skin and he recommends using aloe to keep the skin moist starting now. The one thing they don't want is for patients to be on extra Vitamin C or E...something about too many antioxidants and radiation causing free radicals. One possible SE that I didn't like to hear about was lymphedema of the breast, not the arm. He says it's rare but they have to let everyone know it's possible. And he said that all consent forms say there can be broken ribs but that he has never seen that, ever.
The way this tx is done is lying on my back with my arms raised, elbows up and out and hands over my head. It isn't done lying on my stomach with the breast hanging through a hole in the table. The tx themselves only take a few minutes each time and the whole breast will be radiated. The last few will be the booster ones you hear about and will concentrate on the area where the tumor was.
I've chosen to have the tx at a satellite facility that's only 35 or 40 minutes away vs. the main cancer center that's 75 to 90 minutes depending upon traffic. Being closer is better when you have to do it every weekday for 6 and 1/2 weeks and still try to work.
I like the RO, he has a good, easy manner and is very easy to talk to. That's more than half the battle. And he comes with glowing recommendations from my BS whom I adore. So I'm on my way to a new adventure....I'll keep you posted and will be interested to see what your RO says when you get another appointment.
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Julia2....GOOD FOR YOU! You've started the radiation already...one day closer to being done! This is exciting! I guess it wasn't eventful or you would have said so. WOW...we are getting there aren't we...I just can't wait to have each of us through all the stages and get to NED status!
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Bon, No not eventful, just a bit weird. Laying there thinking, 'Why am I just going to lie here and let them radiate my body? What if they don't point the beam right? What happens if I sneeze? My arm is going to sleep, will I be able to lie still long enough?' That kind of stuff :-)
Julia
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Julia2...I'm so happy to hear that someone else has a mind that wanders to weird places when left in situations like that. I wish I had a tape of the things I was thinking the day they did the PET scan. I kept imagining that the scanner would break and fall on me. Now you've given me something to worry about during the radiation...do I have to pee or I've got an itch or what if the the radiation tech makes a mistake? Heck, there's an endless supply of stuff to worry about, isn't here. Like why this spellchecker doens't deal with contractions....you can put an apostrophe in anything and it thinks that's just fine. (Note: I left the above doesn't spelled incorrectly to show you what I mean).
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This was sent to me today by a dear friend. It's entitled "Attitude".
There once was a woman who woke up one morning, looked in the mirror,
And noticed she had only three hairs on her head.
'Well,' she said, 'I think I'll braid my hair today.'
So she did and she had a wonderful day.The next day she woke up, looked in the mirror
And saw that she had only two hairs on her head.
'H-M-M,' she said, 'I think I'll part my hair down the middle today.'
So she did and she had a grand day.The next day she woke up, looked in the mirror and noticed
That she had only one hair on her head.
'Well,' she said, 'today I'm going to wear my hair in a pony tail.'
So she did, and she had a fun, fun day.The next day she woke up, looked in the mirror and
Noticed that there wasn't a single hair on her head.
'YAY!' she exclaimed. 'I don't have to fix my hair today!'Attitude is everything.
Be kinder than necessary, For everyone you meet is fighting some kind of battle.
It's not what you gather, but what you scatter that tells what kind of life you have lived. -
Latte:
I'm having neoadj and they are telling me I need 4-6 weeks to rest after chemo. I am having lumpectomy and I think they start rads pretty quickly after surgery, although not exactly sure. What type of radiation schedules are people getting? Is 6 weeks common?
Toni
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It dawned on me what might be causing my moodiness - CHEMOPAUSE!!! I was hot, then cold, hot, then cold yesterday! My mood was probably the same! LOL! I'm doing better today. Went to the bank, post office, wig shop, chemo, Sonic (my DH and I go there every time after chemo and get slushies), picked up Mom and looked at her new house (she's moving into it this Saturday), went to dinner and now resting on sofa. I need to sleep, but I'm on a steroid high! Ugh!
Bon - I had sad moments when I got dx with BC for the 2nd time. It really pi$$ed me off. Then, I realized one day I really needed to embrace every moment. I'm so glad that your friend is sharing wonderful adventures with you. When we're all done with this chemo and other treatments/surgeries, we each need to have our wonderful adventures.
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Hello! I was just wondering what chemo brain is? Ive read it quite a bit and have no clue??? I am the day after my 2nd treatment and feeling ok so far. Hop I stat this way! Thanks for all of your helpful post...dont know what I would do without this website. Julie
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Mimi and Trusting: What an ordeal for my fellow canuck girls! I hope the rest of your journey is better.
I was really in a pity-me place for all the bone pain after Docetaxel 1 & 2, but myabe I have to just buck-up and realize I got off okay... all things considering. 2nd week after 2nd infusion, I have the weirdest twitches to my face. My face around my mouth is numb, like after a visit to the dentist. It also affects around my eyes. I think it's the same neuropathy I get on my hands and feet. Really uncomfortable.
When chemo is done, I will be continuing with Herceptin for a year, and I am favouring a mastectomy rather than another lumpectomy. The doc says if I get the mastectomy, then there's no radiation. Decisions, Decisions....
Since I am feeling better, Hubby and I decided to go on a mini get-away. We have to pick up our daughters in Toronto as they are returning from their trip to Greece. I am sooooo excited to see them. Toronto is a day's drive away, so we thought we would turn it into a bit of a get-away for us. I am loving the distraction! I find I am still too weak to really enjoy the shopping or anything too strenuous, but it's great to be away (except that I worry about the kids I left at home!)
I am not going to think about my 3rd Docetaxel.... a week from today....
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