Starting chemo Sept 05
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Barb,
<<and it is not just the Ativan talking either!!!!LOL) >>
Well, yea it is! :-)
*susan* -
Marg, well welcome [I say with a large sigh.] Sorry you needed to find us.
Guess we can start with the hair. Somewhere between day 13 and 17 it will go. Feel free to search my posting history to review how I chose to deal with this. We all feel comfortable in different ways, and I do use the word comfortable loosely in this regard.
I have a friend who is even younger than you [same dx though] with a two-year old. She is at Swedish in Seattle, and she and her husband met with a hospital counselor to discuss how to talk with the kids. She found their suggestions very helpful. Perhaps MD has something similar? Though this might not work for you, this friend chose to have a shaving party at a salon and her two-year old sat on Dad's lap as the hair went away.
Glad that you are managing/tolerating the side effects well. Our September Soul Sisters are clearly one tough bunch!
*susan* -
Hi ladies! I've just finished chemo and can tell you of my experiences. The main thing to remember, as I'm sure you know by now, is that no two of us are alike. We can, though, benefit from others' experiences.
I don't know exactly when I lost my hair because around Day 14, when more was coming out during brushing than usual, my "wig lady" buzzed it off. It was around the time that Natalie Portman had hers buzzed, so I thought that I was very cool! I should tell you, btw, that I am so vain that at first I refused chemo because of the hair loss issue. I can't even believe that now because after I had accepted it, I had tons of fun with the wigs and achieving different looks. At first I had 2 wigs, a long and a mid-length one, both kinda in a shag style. I could braid, ponytail or bun the long one and liked wearing baseball caps with the ponytail sticking out. I must say that it was a joy to style this "hair" since it was so unlike my own baby fine hair! I also have been having fun when, upon learning that I was having chemo, people would say "Well at least you didn't lose your hair!" HA!! Anyway, I think that if you can find a way to ignore the awfulness of being bald and indulge in having fun with your new look, it may help...It did me! On the subject of hair, I can also tell you that I lost ALL of my body hair except for minimal fuzz on my legs and then I actually enjoyed shaving because it made me feel "normal." Other than that, no more underarm shaving or Brazilian waxes for me! The most startling hair loss though was inside my nose! Ya know, I had always thought that nasal hair served no purpose and was left over from our primitive ancestors. Well guess what? It keeps the secretions where they belong...in your nose! Yeah, I've bought more tissues in the last 4 months than in a lifetime! Very funny when ya think about it!
As for feeling sick, bone pain with neulasta/neupogen, fatigue, mouth sores and sex, I had a minimum of everything but the sex which was terrific (definitely recommend K-Y liquid though!). I was never nauseous, but had a 2-day flu-like reaction two weeks after the first infusion. Minimal, occasional bone pain from the neupogen and learned to avoid injecting myself near the hip or lower back to avoid it. For mouth sores, I took a daily capsule of lysine from GNC and used "magic mouthwash" when they really acted up. Also had to switch to Care Bears toothpaste (kinda embarassing in the washroom at work!). As for fatigue, it did creep up on me a bit, especially during the last 4 infusions (Taxol) and I learned to quit fighting it and rest. Sleep actually became a pleasure and I felt as though I were wrapped up in cotton. I did keep up a normal schedule though and worked full time and taught group fitness class some evenings. Also tried to work out daily, but bumped my cardio down from running and step aerobics to power walking. Finally, to avoid peripheral neuropathy from the Taxol, my oncologists (UNC-Chapel Hill) recommended that I take 3 heaping tsps. of Glutamine/day (spaced out), beginning 2 days after infusion and I believe that helped a lot.
If anyone has any other questions about my experience or just wants to vent, please PM me. GOOD LUCK to all of you very brave women..This thing is very doable!!!
Marin -
Hi all,
Hope you dont mind if i start in this discussion.
Had my first a/c on the 30th of august,my second one will be on the 20th of sept.I had a right breast mast on the 1st of July 13 nodes removed,but chemo treatment was put off till I got over an infection after I left hospital took 4 weeks for swelling to go down I actually grew a new boob well it looked like one.
It's been nearly 3 weeks since my first a/c hair is falling out everywhere.I was feeling ok the first 10 days but after that i felt a bit tired and on top of it got my periods wich didn't help.Its 2 more days till I go for second a/c and feeling like I dont want to go,but I will.
thanks to all
Carol -
Hi gals - It's Anne Marie -
Well it's day 16 and the hair is definitely going. I have been pulling it out all day long and can definitely notice the hair line moving back. I got a wig finally today. Took my 9 year old daughter with me. She had fun trying them on too. I have been feeling great this week like my old self as compared to last week which was horrible. I guess they know what they're doing when they space the treatments out three weeks apart so that you feel well when you go back. I do have some swelling today under my arm where I had the axillary node dissection. My husbands says I should call the surgeon. Has anyone else had this and does it warrant calling the doc? It's the weekend so I figured I would wait until Monday. I also had a glass of wine tonight - is this a bad idea? I've been really good about avoiding my weekend glass of wine but tonight it looked so good I had to have just one. Hopefully it will be okay. If anyone can shed their experiences on the arm situation that would be great.
I am so glad the girls that started this week are doing well. Thanks for always being there and take care girls.
Anne Marie -
Hi Marg,
My youngest child is a 4 year old girl and the second youngest is a 13 yr old girl. I was worried about the 4 yr old, but I've recently told her that I'll be taking medicine that will make me lose my hair. She's very aware about the breast cancer because I was nursing her and had to stop this summer before I start chemo. She's curious about the scars and such. I really think she'll be okay because I'm ok. Or at least I act as if I'm ok! The 13 yr old is having fun looking at wig and scarf sites with me. My older children are 19 and 23. One is in college many states away, unfortunately--he just participated in a Relay for Life and raised a lot of money. The son I'm most worried about is the 23 yr old. He seems to be withdrawing--I think the whole thing kind of bothers him. Then again, he is newly married and just out of college. With the other 3 children though, I joke a lot about the possible side effects (chemobrain, losing hair, eyebrows,gaining weight, hot flashes). This way, they are prepared and can joke with me. I'd advise to just keep it light, bright and happy with your girls. When I found out it was defintely Cancer, my 13 yr old was home. I cried in her arms; she was a big comfort and I think it brought us closer together.
I start ac next Wednesday, so please everyone, send good thoughts to me in Delaware. And I'm sending good thoughts and prayers to all of you. What a journey we're all taking!
Constance Diane -
Hi Anne Marie,
My arm hurts now too from the axillary node dissection. I don't know what I could have done to cause it and I'm hoping some more experienced people will advise. I don't know if it's swollen; it just hurts. Sometimes I get prickly feelings up and down, do you?
As for the wine, I've heard various things about it. One from Bernie Siegal was that if it(one glass) helped you get thru, it was ok. Another was somewhere else, either a book from cancer survivors or here, and she said wine aggravated mouth sores because of the acidity of the wine. I don't start until next Wednesday, so I've been enjoying it while I can. My onc also said not to drink any, but she didn't say why.
Sounds like fun with your daughter. I hope to do the same with mine. Good luck.
Constance Diane -
Hi Constance - Know exactly what you are saying about the pins and needles. Had a left mast on 8/31 and have been fortunate that there has been little if any swelling. But the weird feeling in my arm is something else. We have been enjoying great weather in Ohio, and my husband and I sit out on the deck in the evening with a great glass of wine in hand - but the cool weather really sets my arm off. Like, I can't stand a chill in the arm as it causes needles up and down my left arm!
I have my first visit with the onc on 9/28, so I am going to enjoy my evening glass of wine as long as possible - and wear a jacket when the evening chill sets in! -
Morning ladies! Please tell me if I'm posting these messages wrong. I don't know if I should be replying to mine or someone elses to get a post on. Shows you how much I've been in these discussion boards! Well day 4 after treatment #1 and I feel fine so far today. Day 2 was terrible! Seems like I'm just waiting for things to happen. Hope I feel OK tomorrow because I have to go to work. When does the pain from the neulasta shot usually start? When do you usually start getting constipation?
When I was going into town a few weeks ago to get my Petscan/Ctscan and test results (Scariest day I think I had) there was this song playing on the radio that really boosted my spirits some. For my age (54 yrs.) I shouldn't like music from R.E.M. but I do. This song (EVERYONE HURTS) was played after "911" and it should be played for New Orleans too but I'm going to add another post with the lyrics because it really reminds me of what we are going through...pain crying etc etc. If anyone wants the link for the 911 website (that does have the music and pictures) let me know. I cryed when I found that site but I was just looking for the song to listen to.
Cheryl -
OK - here are the lyrics for "Everyone Hurts"
R.E.M. Everybody Hurts Lyrics
(Berry/Buck/Mills/Stipe)
When the day is long and the night, the night is yours alone,
When you're sure you've had enough of this life, well hang on
Don't let yourself go, 'cause everybody cries and everybody hurts sometimes
Sometimes everything is wrong. Now it's time to sing along
When your day is night alone, (hold on, hold on)
If you feel like letting go, (hold on)
When you think you've had too much of this life, well hang on
'Cause everybody hurts. Take comfort in your friends
Everybody hurts. Don't throw your hand. Oh, no. Don't throw your hand
If you feel like you're alone, no, no, no, you are not alone
If you're on your own in this life, the days and nights are long,
When you think you've had too much of this life to hang on
Well, everybody hurts sometimes,
Everybody cries. And everybody hurts sometimes
And everybody hurts sometimes. So, hold on, hold on
Hold on, hold on, hold on, hold on, hold on, hold on
Everybody hurts. You are not alone -
Hello all, its Marg
Thank you Susan for the warm welcome. Yesterday (day 8 after 1st AC) while washing my hair it did start coming out, not a whole lot but each time I ran my fingers through it, more than ususal strands of hair came with it. My daughters were there and I showed them. I told them that it was a great sign because that is how we know mommies medication was working and getting rid of the "bad germs" in my body. I also decided to have my head shaved as soon as it starts to look crapy. I have long hair (below the shoulder) and I told the girls that we would put it in a bowl and take it to a park and let it loose so the birds could make nests with. I had been feeling great these last two days, no nothing almost like my old self again until I read the morning paper and in the obits it read "40 year died after 4 years of battling breast cancer leaving behind 2 children and loving husband of 20 years" talk about a set back. Full blown "why me?" moment. I know that I don't know anything about this woman and what stage she was in or treatment she had but just the fact that she was one of "US" just broke my heart. I am getting ready for church and I have been praying hard for strengh and peace. I start work on Monday for 2 weeks until my next cycle on 10/3/05. I drive to Houston for tx, I live in Brownsville TX (think the tip of texas). I am so happy I found this site and can't wait to share your experiences and mine with all of you. God bless us all, Marg
Somwhere I read " I am woman living with breast cancer not dying from it". I love that quote. -
Cheryl,
You are posting just fine, and I am so pleased to hear that you are feeling better. I have not gotten neulasta pain, so perhaps you won't either. Let us know how your day at work goes. See how strong you are??
*susan* -
Anne Marie, my onc says wine is fine [in moderation] after day 5. I actually had a glass last night with dinner because my dinner deserved a glass of wine! I figure that wine is a lot easier on my body than all these other drugs I am taking. If I were taking Ativan, I probably wouldn't drink, but that is just me.
MJ & Anne Marie, my arm also has the needles tingle, but I consider that to be progress. Until recently that area was totally numb. My surgeon said to expect this as the nerve endings work to rebuild, but that many women never have feeling again. She estimated a full year before I would know what feelings I would have permanently.
Carol, another sigh and another welcome. Of course you are more than welcome to join the September Soul Sisters. Know what you mean about making yourself go back for more, but what else would we do? My second chemo is on Wednesday the 21st and though I try not to think about it, I do.
Constance Diane, nice to hear from you again. Sounds like you are doing a wonderful job helping your children find their own comfort level with what is happening to you. No question good thoughts will be headed towards Delaware on Wednesday.
I have spent the weekend making small nutricious snacks and throwing them in the freezer for what is to come. Small quiche and meatballs so far. Tuesday I will go to the farm stand to buy more peaches for my smoothies. We are harvesting the last of the tomatoes which I will turn into a roasted tomato sauce. Since my mouth can't handle acid right now, this is a way of preserving the tomatoes so that I can enjoy them later, apres-chemo.
Tuesday evening my hairdresser will shave my head. And then Wednesday, round 2 begins.
All in a day, I guess. May this posting find all of you in good spirits and feeling well.
*susan* -
Oh, just noticed Anne Marie's arm swelling! Yes, call your doctor immediately! Ask to see a Lymphedema Physical Therapist if your center has one. Don't let this go.....
*susan* -
Well I actually got out of the house for a few hours today and it felt good. Although I am more tired then I have ever been in my life! I was always one to do 5-6 hours a night and go all day. Now I am lucky if I do 2-3 naps a day! My friend came and took my daughter and I out for chinese food. I never thought egg drop soup could taste so good! Althought the lack of taste is irritating! Oh well...may as well get used to it for a while.
Tina -
Day 20
Good bye Hair! Adios, Sayonara, Arriverderci!
On Friday I noticed a lot of hair in the drain after my shower. Not yet! I wasn't ready. We had plans to go out with my brother and sister-in-law, so I stopped touching and took it out one more time. I hate to admit that I avoided taking a shower yesterday-one more day. This morning I accepted the inevitable, took a shower and got covered with all the little pieces-yuck. (Susan, you have the right idea-shave it first-I turned into a big baby)
There was still plenty left after my shower, so I went out on the deck and had my husband clip it as close to my head as he could and, I admit, I feel much better now. I put on a floppy canvas hat and took the dogs for a walk.
Next situation: Open School Night at the high school tomorrow night, where I will be meeting my daughter's teachers and running into people who might not know what I've been going through this summer.
Will I wear one of the critters? or attempt the scarf look? I'll let you know.
Peggy -
A Bittersweet Welcome to Marg, Carol, and MJ
We're all in this together, so thanks for sharing.
I hope everybody is having a good weekend.
The alcohol issue: I was told to avoid it, because your liver has enough problems with these poisons, but I think an occasional glass of wine during the "in between" period (not right before or right after an infusion) can't hurt.
Thanks for the song lyrics, Cheryl. They are so appropriate.
I am noticing that so many of you seem to have young children. I give you so much credit for dealing with all of this and you're doing a wonderful job of helping your children to understand. Marg, what a great idea, to bring your hair to the park for the birds.
I hope those of you who have treatments this week, have an easy, uncomplicated time.
My best to all,
Peggy -
Peg,
You have kept your hair a long time! I just noticed this morning that my license runs out in several weeks. Well in several weeks, I will be bald! The thought of having a bald picture on my license for the next 5 years just isn't acceptable. I am off to the DMV today.
Pixie is better than bald! Hope everyone is doing well.
*susan* -
Hi all. Hope I am not just jumping in. I am new, well relatively. Feel like I have been on these boards a long time waiting for my treatment to begin. I had my surgery on June 28th but had a failed recon so long story short I have been waiting for chemo, and waiting, and waiting and finally it is here. I had my first AC on the 9th. Only really felt bad for about two days with a headach and an icky stomach but then fine. It is now day 11 and no sign of hair falling out. I keep thinking maybe I will be one of the lucky ones. Well here's hoping anyway. I have two small kids 3 and 7. I have told them that my hair will be coming out as well. Hasn't seemed to phase either one. I have a wig ready...but really wonder whether I will use it as it just feels funny, or rather I feel a little rediculous with it on. Other than that no side effects. In a very wierd way I am actually anxious to get my next treatment. It occured to me once I get #2...I'm half way done!
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I am feeling so well today its almost like I am not even sick! What the difference a day makes! I hope all are feeling better and good luck with your treatments this week.
Tina -
Well, the anti-inflammatories wore off. Now, the 5th day after chemo i feel hit by a truck, i understand how some of you feel now. my muscles or bones are aching and i am tired.
What do you think is happening to cause this/
1. Is it the Neupogen shots?
2. Is it the toxins and dead cells exiting my system killed by the chemo?
3. Is it the drugs wearing off?
I dont know how you guys are so non-complaining. 4 months of this????? oh man...... -
Ann Marie, I also have swelling under my arm...mine is around the incision area (on my body, not my arm), making me uncomfortable. It has increased during the last two weeks (noticeably to me), but my oncologist said it was not enough to aspirate the area and that my body will absorb the fluid. (I only had about 7 lymph nodes removed.) I don't quite know what to think, but if it continues to collect more fluid, I'm going to call my surgeon back. Hey with me, it's hard for someone else to tell if it's fat versus fluid, but I know that it is all fluid!!! I start chemo Thursday...I read your experiences, and keep thinking that 'I can do this...' but I am scared.
Bubbles...I know they have me on Decadron the day of my chemo (in my drip), and I'll be taking it for three days after that...I've been prescribed Avitan as needed (1/2 to 1 tab every 4 to 6 hours)...plus three other nauseau medicines (one for acid reflux). Quite frankly, I can't see how anyone wouldn't feel horrible with all this going into your body. I was told to take some advil or tylenol (I think ibupropen would work better) for aches and pains...Someone mentioned that going for a walk helped with the pain...I believe that is true.
Prayer, that's a good way to think of it...after your second you ARE half way done! I'll keep that in mind when I make it through my second one! Thanks. Janet -
Hi everyone
Im on day 7 after first chemo (FEC x 8 every three weeks) and i feel good, tired, but no other side effects as yet.
Seems like a lot of you ladies will be finished chemo way before me...I will be on it until February.
Im also becoming increasingly worried about losing my hair... I have removed most of my body hair before I start moulting everywhere, I have my sister on standby to come around and "buzz" me when it starts falling out.
I hope I wont fall apart too much when this happens.
Cheryl...I love that song..thanks for reminding me of it.
I hope everyone has a good day.
Maxine -
Oh,Bubbles, tell me I won't have to forego my coffee. I am so addicted to it, and I suffer incredible withdrawal headaches--please, tell me it will be ok...
Is constipation fairly typical? My onc's office just set me up with a list of what I need and nothing was said about that. I do eat flax every morning--I wonder if that will help. It didn't help prevent breast cancer and it is supposed to help.
Let the ativan keep talking and I hope you continue to feel just as good as you do now. Wednesday is my D-day...so I need to know everything I can from those of you already experiencing it.Good Luck to all.
Constance -
CD, you MUST have your coffee! But here is how you do it. First eat some Tums and drink the coffee real slowly to see how you do. You can also eat a buiscuit or something with the coffee.
Drinking coffee like i usually did on an empty stomach was not the best for me.
And start eating Senna tablets, two a day, for constipation. I also ate fibercon tabs and once i took milk of Magnesia. Benefiber power mixed in my water or coffee seems to help too. So far I have been able to avoid the WORST of the constipation.... -
hi all
Today is second round of a/c.Feeling a bit anxious.My partner cant make it today so my mum and dad are taking me I really want jason to go.
I am starting to get dull aches in my spine was wondering if that was from chemo.
its ao good to read everyones post good luck to all
Love Carol -
Susan,
That's funny about your license. It's a good thing you noticed. Timing is everything.
About constipation- I got a little "blocked" after my first treatment and colase helped. Since then I've been eating high fiber cereal and didn't have a problem after #2. I'm sure any of those over the counter remedies will help, too.
And I, too, need my cup of coffee in the morning with food.
Anne Marie and Janet, I had some fluid retention in the weeks following the removal of the drains (more in my abdomen than under my arm).I was told it was lymphatic fluid and my surgeon aspirated 80ccs during an office visit! After that the bit that accumulated did get reabsorbed
Maxine, I'm not sure about the affects of FEC on hair, but now I can say from experience, losing it is awful for an hour or two. I crawled into bed and put the covers over my head for awhile. Especially when you're feeling okay, it's an outward sign that you're a cancer patient. But then you get over it and start to play-wigs, scarves, caps. Today I was thinking bout finding something soft to keep the chill off my scalp and I cut the bottom off an old t-shirt and twisted it over my head-instant turban! (for around the house, not in public)I've decided to take my wig for a trial run to Open School Night at the high school tonight.
Tina, glad your feeling better.
Bubbles, and anyone else experiencing bad side affects-talk to your doctors. There's got to be a way around this nasty stuff.
Hope all goes well today, Carol.
Now, I have one more personal gripe. In the middle of my hair trauma this weekend, I got my period! I got it the night of my mastectomy in July and the night before my port surgery in August, I'm still regular like clockwork! I'm 53 years old, for Pete's sake! Is this some kind of cosmic joke or what?!
Best to all,
Peggy -
I actually ventured to the office for a few hours today....and will probably sleep all day tomorrow recovering! (I am a realtor and that is my only source of income...just trying to keep a few things moving...)
Tina
The constipation thing got me a bit...but I know what turns me the other way...milk products.(lactose intollerant)..and it worked like a charm..LOL . Also after having that bad headache I started on day 2 to have my cup of coffee and it seemed to ease things a bit. I am not sure if it was due to the fact that I was up and around a bit today but OMG the hot flashes (I have had them many years from the age of 12..off and on....)but never anything like these the last few days. I am SOOOOOOOOOO glad I do not have Peggys issue...thank goodness a hysterectomy 5 years ago at 30 cured that! I could not imagine going through my period and all this crap!
Maxine...I may not be done with chemo for a long time either. I am due until the end of November for the AC then its either the surgery or the 12 weeks of taxol. They also said after surgery I will have more chemo then radiation! I am in it for the long haul just going at it a different way then you.
Peggy good luck with the wig. I took mine for a test run even though I still have my hair and no one even noticed it was not MINE!! They just commented how good I looked for having just gone through chemo a few days ago. -
I know how u feely peggy,I was hoping for instant menopause and was very disapointed to get my periods and it was right on time.Ill be waiting to see if it stops next month.
-
I am so annoyed! I just need to vent. I hate my onc and have decided to switch. She is very negative. I am in the process of moving over to another one but can not get it done due to insurance, until nov 1. Everything I have asked her has been an issue? Today I asked her about dose dense AC and she replied that it really wasn't acceptable for me as I am node negative...but then she tells me I am high risk and even gave me a quality of life comment the other day. Well I should explain that. I had an infection in one of my implants and had to have it removed. I saw her the next week after I got out of the hospital and she was annoyed when I chose AC over FEC. Her reply to my choice was "I understand it's about qulity of life." What???? I remember those quality of life comments at the end of my mother's life. When she was dying of BC the docotrs made those same statements. I swear this woman is probably killing her own patients with her attitude before the cancer ever gets them.
I don't get it. If I am so high risk why can't I have dose dense? I feel like I have gotten none of what I have wanted through this whole damn experience. Thanks for letting me vent.
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