Starting Chemo October 2009
Comments
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Jennifer I'm glad you were able to make that decision for yourself.
I know it's a hard one to come to terms with.
A lot of women (me included) think we are super-beings and try to keep powering through when we come up against something like BC.
I have scaled back on EVERYTHING! I've dropped all of my work obligations, volunteer committees, extra activities and hobbies. My focus right now is on my health, my family and my home.
It's hard to admit it but we can't do it all - all the time - I'm not saying give up the extras - but just letting go a few things to concentrate all of our SUPER powers on getting better will make a big difference.
Just my opinion...
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Hey Jean _ CONGRATULATIONS! that is great news- did they set upw/ a date and/or pretests! I am so happy for you-Taking the next step is anxiety provoking but it also means less worry about the unknown and the beginning of treatment means the closer to the end of it. Day#2 minimal side effects.
Oh, If good food doesn't work for constipation Miralax is a god send has no taste and works w/o cramps. Also they told me to take colace every day. Heres to working plumbing! Peace to all! Valerie
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My sister told me Miralax is great, as well.
OK, this one goes on the list of "Stupid Things to Do in Your First Few Days on Chemo": I am thinking the 2 bowls of chicken corn chowder that I just devoured - with habanero sauce added - may not be the brightest idea I've had today. Feeling the rumbling on both ends!
On the plus side, may not need that Miralax after all!
Have a great Friday night, Gals!
Laura
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Dear Laura,
Your post made me smile!
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Can you add me to the roll for Oct 09.
I start chemo on Oct. 23rd, port placement in the morning and then chemo in the afternoon. I think my regimen is - I do know it is dose dense and the "red devil" for the first 4 rounds.
dose dense AC x 4, then Taxol x 8
possibly more Taxol as there is a clinical study looking at the potential positive effects of longer chemo
clariceak/clarice
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Day three for my Mom. She is doing really well. She slept alot today but she has had insomnia for so long she has been enjoying catching up on her sleep. Hopefully she will be able to sleep tonight! She said she was a little achy off and on today but it was just a little and very tolerable. We will see what the weekend brings. Going to get her some ice cream and watch a lifetime movie together! I hope everyone has a good night, gets some rest.
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sum45, i am so sorry to hear about your loss. i can't begin to imagine all that you are going through.
Newtonville, seems like we have a similar schedule. I just went in for my second treatment today and i feel ok, this time with my first treatent was awful. i think it took about 5 days to start feeling better. the first night of first treatment was my worst. so right now i am happy that i an feeling ok bc i didn't think i would. I buzzed my hair last saturday even though nothing had started falling out and went straight to the wig. it was a bit difficult but one more thing we just need to overcome. i did finding that going to the gym with no wig and just a hat incredibly intimidating and i was so nervous. i hope your treatment went ok.
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Dear Clarice,
Welcome! I got my first chemo on Sept/28 and am sort of "cheating" by being on this roll-call
The regimen you are speaking of is 4 biweekly cycles of AC [with A being the red devil] followed by 12 weekly cycles of T or by 4 biweekly cycles of T. These are very widely used and highly effective chemo regimens for Stage II/III BC.
Before you start chemo, make sure to get at least 1 other oncologist's opinion. Preferably from an oncologist specializing in breast cancer and affiliated with a teaching/research/university hospital.
Ask your oncologist to check out clinical trials which might be right for you. There is one in particular - ECOG 5103 - in which Avastin/Placebo is given in addition to the standard chemo. The enrollment for that trial is currently suspended while they investigate certain issues but I think with Stage IIIB you ought to make a few phone calls to find out when they expect to open enrollment again. I am on this trial too and so are several others.
Good luck!
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Hi Ladies. Sorry you all have to be here.
I have a video to share with you. My friends son needed a project for his media class in college so he taped my head shaving party.
Best wishes to all of you. Drink lots of water and remember that the anticipation is worse than the actual treatment.
I'm cellibrating my one year for DX and I now have a whopping 2 inches of hair. Although it doesn't seem like it, life does get better.
Best wishes to all of you.
http://www.youtube.com/watch?v=zznlRBX4wEg
ReneeS
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Renee, thank you! That was wonderful. You were so brave to do it in front of your friends and to agree to having it taped.
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Dear Renee,
That was such an inspirational and courageous video. Professionally made too.
Thank you SO MUCH for sharing.
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Early Saturday Morning, Day 6 from TX -
After the corn chowder debacle last night, I think I started to feel better! Its too soon to tell this morning (because I've been feeling ok when I wake up, and then just fade throughout the day), but I hope I'm through the worst of this one. Not too bad, but combined with the stress of the unknown . . .
I do have some hip/tailbone pain. Not a lot. Almost as if I'd played ball for too long, or rode in the car for too long. I do think the Claritin works, and have been taking it faithfully twice/day. This has also helped with my allergies and just the sinus pressure (from chemo?).
I cried when I watched Renee's video above. That is what my friends want to do. I just don't think I can do it in front of everyone. I try to be strong most times, but there are moments when I just go and cry and want to be by myself. I do not want my kids to think that this has beaten me down in any way. If nothing else comes out of this, I want them to know that you can live your life, with whatever adversity is thrown your way, full blown, all out, everything in high gear.
I don't think anyone has seen me cry over this yet. And I'm not sure I'm ready. I owned a hair salon for many years, and even built a station in the basement for my daughter to do hair. I think I will keep the head shave private with the kids. I did tell them they can sign my head.
OK, back to the strong! If I continue to feel well this morning, I will go out for breakfast! I think I will pass on the chorizo (unless the constipation thing comes back, but now we know what works!), but eggs and potatoes sound good. Even if I can't taste them. Which reminds me, the lemon drops do give you a few minutes of revived tastebuds. Don't get the honey kind. Just the Lemon Mint.
Thanks to Renee for sharing, and have a great day Ladies!!
Laura
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unklezwifeonty - Thank you for the advice. Due to numerous local screw-ups which have delayed my treatment, I don't think I have the luxury of seeking another onc's opinion. My onc specializes in breast cancer and was voted of the top bc oncs in Seattle by her peers so I'm think I'm in good hands.
My situation doesn't allow much flexibility because I have to fly 800 miles for visits with an onc and therefore not eligbible for trials. I will ask her about the other trials. Since you seem to be up on the latest information, any thoughts on combining Zometa and chemo?
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Dear Clarice,
You are happy with your current onco so continue with her. The most important thing is peace of mind and trust in your doctor. This journey is not going to be without ups and downs and during the down times you will need to trust your doc to do the right thing for you.
I would ask her if ECOG 5103 (Chemo +/- Avastin) and/or SWOG 0307 (Bisphosphonates such as Zometa) are right for you. 1 of the oncos I consulted mentioned SWOG 0307 and indicated that it is started near/after the end of chemo. You can also get the drug without the trial and start it any time after chemo. The drug is given every 6 months for 3 years. It is thought to help with bone density issues and reduce chances of bone mets. It does have a rare but serious quality of life side effect - Osteo Necrosis of Jaw (ONJ) or death of jaw bone - which I am scared of.
Good luck with your treatment..... if the 800 miles travel bothers you too much, you may want to ask your onco if you can get the chemos at a local center and visit her once every 2-3 chemos.
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I was watching Renee's video this morning, and cried right along with her. Right then I got an e-mail response from a friend who does hair that I had sent a note to. I wear my hair fairly short, but brushing it has become an ordeal the last two days as my brush keeps filling up. My friend suggested an uber-short cut (no buzz yet) and came over and gave it to me. The good news? There was no crying. I had already had my emotional moment.
The time I almost cried was when my friend commented on the fact that as she turned down my street she saw something that had become a symbol for a friend that she lost earlier this year to BC. She said she talked to her friend right then (sorta) and told her how good it felt that she could be helping someone else. (me.)
Boy, this disease hits all of our emotions, doesn't it?
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Hi Ladies:
I know that I have been MIA. I have been actually having a good weekend trying to be as "normal" as possible and riding the somewhat even se's of the " now". It is day 10 since my first ddAC and excepting the lovely new se of mouth sores I have remained overall the same. My fatigue has only been slight and I have returned to my pseudo normal exercise routine (walk 3.4 miles daily instead of run) and even went to Busch Gardens on Friday!!! I am doing all I can to enjoy the last few weeks of no crowds here in Florida before the snowbirds and tourists return for the winter months.
Yes, if I look at my "new normal" - every single thingabout my life has been altered and absolutely nothing is as it was (as many have said, I too loved my old life and daily was appreciative of the blessings I had); however, there is little other option than to buckle up my big girl boots and walk through all of the sh** we with bc have to deal with daily. So simply put, I DO what I have to do to take care of myself physically and emotionally.
I had my weekly visit with my ONC on Friday and everything seems to be fine. My blood counts were as expected - WBC was only a 2 but this is not unexpected and she pointed out that by having the Neulasta shot it was was a good thing -otherwise the counts would undoubtedly be lower. My other counts and vitals were where they should be - under the circumstances. So, now I hopefully will enjoy this week until Friday at 8 am when we start tx 2.
My Onc also pointed out that my hair will undoubtedly see an exodus this week. I hear many of our sisters on this board refer to is as coming out in clumps - so I will preempt it with a buzz cut on Thursday (day 14) which is before the second tx on Friday morn. I do not want to risk a nick or cut to my scalp that may interfere with blood counts and alter my chemo schedule. I will pick up my wig (finally) and have it styled then too. The weather here is still over 92 daily with a heat index over 100 so I am not too sure about wearing the wig other than to indoor activities - I hope to rock the scarf look without looking like a pirate or a rapper. We'll see on the scarfs since few pirates or rappers are 5'7' 109 lbs I doubt there will be confusion. Sadly I look a bit like a Qtip
I wish you all a wonderful Sunday with love and enjoyment in all you choose to do!
-Jaclyn
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Hey Jaclyn - Sounds like you're getting SASSY! Which I think is probably more pre-BC normal for you. Maybe not all has changed. It just takes a little extra digging to bring out the inner spark. Where is Longboat Key? We try to go to Marco Island every year (not really snowbirds since we live in AZ and typically go in the summer!).
Even before the BC diagnosis, I told people I was going to dress pirate/bohemian this season. Bring on the scarves and puffy shirts! The old double D's would never accomodate any sort of button up shirt, and puffy just made me look like I was trying to communicate via Seminole flags. I'm just going to embrace the change and pretend I'm in some long costume show.
I actually took a valium last night. Only because I could not get comfortable with the hip/tailbone irritation. Not so painful that I couldn't sleep, just couldn't get in the right position. And I doubled up on the Senekot-S. But I see habanero sauce in my future again if things don't get moving (so to speak)! I would almost feel normal if my taste buds would come back.
Feeling pretty good this morning. I would like to BBQ here at the house because the weather is just great. Today is Day 7 from 1st tx. I don't do my blood work until Tuesday, so I don't know my WBCs. Does anyone think its too risky? I made myself stay home last night.
Love to All -
Laura
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hi nancy724
yes i feel the same. 2nd tx is better this time however first 5days are a blur to me. i can't go to bathroom, constipation really killsme,. doingmiralax,colaceeachday, and eating veggies,still notworking.after i stop EMEND which is today, no emend, hopefully it will work. usually after 6 days i see the light.
im getting grapes today thanku MARIEK, im desperate for any advice.
my hair is shedding a lot more, and much more sensitive. my hair is short like a boy and i m not ready to shave it yet. we see how much i can tolerate without shaving.
have a good day ladies.
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Renee,
u are our hope. i watched ur tape last month with tears. now my hair is falling off itself. im not shaving it yet. but hearing that after ayearhaving 2inches of hair issuch a big step to look forwardto. i can'twait to get done with chemo and start hoping growing my hair inch by inch. it will be a looong year. thank u
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Newtonville try the grapes - today I am finally back to the normal routine all on my own.
Judgejaclyn & Azdiva - I love the pirate/bohemian idea and lucky for you that you have the warm weather to pull that off. I'm thinking peasant skirts and pirate tops. Not sure if that will work for me in our rainy winter climate but I've got an overzealous MIL who is knitting "chemo caps" like crazy. I have a fine collection to get me through our winter although some of them look like strange brush cut wigs (black eyelash wool).
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Hi MaryNY,
Yes, I can relate to your impatience. I had so many tests done right after my dx that I thought things were moving along well. Now they seem to have come to a stand still. I met with the Onc and he wasn't all that great in answering quetions and explaining things. I called the surgeon to ask her opinion on possible changing Oncs, she said it should be okay, shouldn't delay me too long.
Now I meet with the new Dr. tomorrow, who will have to review everything. Still need my port placement too, so it will be close to the end of Oct. before I will start chemo. Every two weeks, 6-8 rounds of Taxol, Cytoxan and Adriamycin. I'm ready to get this behind me but scared at the same time. Thanks for strting the thread, I wish none of us had to be here. Piffken.
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Dear MarieK,
Ask your MIL if she wants to start a non-profit org giving away the knitted chemo caps. I think that will get the message across!
Dear Renee,
I watched your video again today. I don't think I will have the courage to do a shave party with friends. Maybe I am a more private person. Today I think my pubes are starting to come off. I felt that a few tufts came off when I was showering. The head hair is still holding on. Keeping my fingers crossed and the wig ready
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My hair is taunting me....
I can count on the occasional bad hair day - fly away, weird part, flippy ends etc.
Lately I have had the best hair days that I know something must be up....
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Renee- your video stopped me in my tracks. I can't stop thinking about it. How brave you were to let it be filmed.
I have been through 2 lumpectomies and all has gone well with mild SE's. I kept thinking I am handling BC so well. Now my onc visit approaches (Oct 15) and it now seems so much scarier. The worry of how I will handle SE of chemo and the fright of losing my hair and looking like a cancer patient is creeping up on me.
I wish we all could flash forward a year and be on the other side of this disease.
Jean
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Marie - I am thinking the same thing! My hair is like the race horse on its way to the glue factory. Maybe it thinks it has something to prove, and therefore is deciding to look good? I think its waiting for me to go out for dinner and then it will fall into the soup.
Onty - I wish my pubes were falling off! I've spent the last 10 years dedicated to the eradication of all hair below the ears. No such luck. My onc said they might not come out! (And that was yet another conversation that I'm sure has convinced him I am crazy.)
If I haven't felt all that sick this week does it mean the chemo isn't working? I saw a Dateline show where some pharmacist diluted chemo medication and pocketed the difference. I don't think that's happening here, but now I'm worried that the Vitamin Water I drank one day undid all of the chemo. OK, I'm sure that's not true either because only a few years ago they were telling everyone to take vitamins and antioxidents. But you get my gist.
Many of my friends did the walk today. I have to say, although I really appreciate everyone's efforts, I am getting a little sick of pink. And I feel like the poster girl for cancer amongst my little social group.
Have a Great Night!
Laura
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It sounds like most of you are adjusting as well as possible. I've been away from the computer all weekend sleeping - I caught a bad cold. Hopefully, I'll be all recovered by Wednesday, when I'm scheduled to start chemo. I don't want to put this off any longer than I already have.
Laura, I know how you feel about the overabundance of pink. While I appreciate that it raises awareness, I don't see how a huge popcorn tub at the movie theater with a big pink bow on it is going to do much for the cause. Yes, I actually saw that last weekend.
Jean, I am with you on the flashing forward - too bad we can't just skip over the yucky parts!
My hair is not cooperating lately, even though it's in its last weeks. I'm considering getting a really short cut, but then I can't justify it when I think it's all going to be gone in a few weeks anyway.
Have a great Columbus day everyone!
Peace,
Shelby
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Dear Laura, your post made me laugh. My DH is gonna LOVE the hairless South. Also about SE's, everyone is different. I heard that the SE's get worse over each cycle. I don't think it has anything to do with whether your chemo is working on cancer cells. It has to do with whether the chemo is working on the fast multiplying/growing normal cells in your GI Tract, hair and nails.
Dear Shelby, maybe you should ask DH to give you a short buzz. It does not have to be stylish because it is going to be for a short time only.
All, my chemo #2 is on Columbus Day Monday. Wish me luck.
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Onty good luck with your chemo!
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hi every one this is the most scareast time for me give me surgery and im ok give me chemo and i want to runn soooo fast and far away ill be starting chemo in a week or so havnt got a date just yet im a hairdresser and just love the hair i dont want to loose it like most of you so im going to try and have as much fun with it as possible get a few diffrent wigs and lots of scarfs im trying to pluck up the guts to be able to pull it of with a look of confidents i was just in awe when i saw renees vidio you are just amazing thanks for sharing that with us all i want to know if its ok to do spray tans when doing chemo
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HI newtonville,
had my 2nd treatment on friday and so much better than the first time. some slight nausea and fatigue but nothing compared to the first time. also, now that you mention emmend, i realize that i forgot to take it today but felt ok. hopefully no problem in not taking it. will call my onc tomorrow morning. i buzzed (a little longer than a crew cut) my head last week because waiting for it to happen was driving me crazy. it has started falling out in clumps begining Saturday (so day 15 post first treatment). it is sad and considering buzzing it off completely instead of watching it come off daily in the shower or on my clothes. hang in there ladies... there is light at the end of the tunnel
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