Starting Chemo September 2015; join us!
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One consideration is that letting your hair come out on its own has resulted in big drain-unclogging plumbing bills for more than one person I know!
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Dear SoccerChick80, Welcome to the BCO community. We are sorry about your recent diagnoses but grateful that you reached out to this informed group of others who can lend information and support along the way. We hope that you will stay connected and keep posting. We will be thinking of you as September 10th comes closer. The Mods
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I had a busy day today. Bone Scan, abdominal ultrasound and my first visit with medical oncologist. I will start chemo Sept. 10 and will have dose dense AC/Taxol, 8 rounds. Best news today was that I was HER2-FISH..yay!
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Hi. I'm also starting chemo in September and looking for some support/comraderie.
I'm 43, I have a toddler (soon to be 3 yo). I work full time at a desk job and will be trying to work through.
They are putting my port in on September 15 and my first chemo will be September 17. I'll be doing 6 cycles of TCHP and Herceptin (every three weeks so 18 weeks total). Then I'll have a month off, then mastectomy. After recovering from surgery I'll have radiation (5 weeks) and Herceptin (1year) with estrogen suppression for 5-7 years. Whew!
I'm starting to think about getting a wig. What will you guys be doing about head coverings? My oncologist really doesn't want me to try the cold cap (I was wanting to try it).
It still doesn't seem like it's really happening.
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@ SoccerChick80, there is no way I am letting my hair fall out. I keep thinking about that scene from the movie The Craft and would feel traumatized if it were to come out in clumps. I already have a date set one week after first chemo to shave it to the scalp. One of my best girlfriends is coming over to do it for me. I am quite a controlling person and it a comfort to be able to control that. My almost-five-year-old (girl) thinks it is a great idea too. It's been so hot here she is begging to shave hers as well (no way!).
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edwsmom, my doctor does not encourage the use of cold caps so my hair is going to go for sure. I am not going to wear a wig. First of all, it is blazing hot where I live and also, I just don't want to. It sounds uncomfortable. I got a couple chemo hats but I don't mind just being bald. I shaved my head once when I was a teenager (very edgy phase, huh?) and I actually found it quite nice in the summer.
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I'm shopping for a wig next week and picking up several caps/hats. Timing is good as the cooler weather will be here soon enough and make me look somewhat normal wearing hats. I will have a head shaving party as well.
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My MO also did not recommend the cold cap because he said it was a lot of work and if you miss one little area you will have a bald spot which defeats the whole thing. My hair is very short and I already got a wig. I think I'm happier thinking about a fun new hairstyle than wearing a chemo scarf!I work in a school and it's probably a lot easier if I have some hair.....less concern and questioning. I assume I'll wear hats too when I'm not at work. I also do not believe this is happening, but we will all get through it!
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I work in a school too (I am a teacher) and I told a few people and told them it wasn't a secret and that they can tell others (it is going to be obvious two weeks from now when I am completely bald and all puffy from steroids). Now it has become so depressing because people keep coming up to me and saying, "I just heard the news, I am SO sorry!" I know they are being nice but it just makes me depressed because I am still sort of reeling from the whole thing and just hearing that reinforces I HAVE CANCER, HOLY SHIT. Some people want to chat about it and I feel like saying, "Enough about MY tits, let's talk about YOUR tits now!"
Then the worst is people who don't even say anything, they just look at me sadly and kind of go, "awww" quietly.
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teacherhikermom, I know exactly what you mean! that is exactly the type of reaction I don't want to get from co-workers! I have thus far told very few people at work...but of the four I've told (one was my boss), two started crying! I appreciate their caring, but it is just another reminder. Just not sure how much of that I want to deal with, as I am now figuring everyone will know once my hair goes... :-(
I've decided wigs aren't for me. Good wigs are expensive, they seem less comfortable than a scarf, especially since where I live October can be very warm. For some reason I am more worried about them coming off my head or getting twisted than a scarf. Seen too many bad toupes in my life maybe ? :-) In any case, I've got some scarves and am going to order a few more.
I have thought about not saying anything and letting people wonder about the scarves and talk behind my back if they want...but how much you want to bet that people will come up to me and say 'Do you have cancer? Is something wrong?'
Sigh. No good answers.
Hugs to all this morning! Welcome to the new members of our group!
Octogirl
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Ladies, I started four rounds of TC on July 31st and have now completed two rounds. I
have to say the side effects, knock on wood, have so far been minimal. I have had no nausea and really have taken none of my meds for that as they haven't been needed. Day five and six I have had headaches , little sore throat, stiff neck just kind of like having a mild case of the flu. I have popped a few ibuprofen , the occasional Tylenol , still go exercise at the Y but take it a little easier and just thank my lucky stars it hasn't been worse. I haven't had a neulasta shot yet so can't attest to the side effects of that. About the hair thing, I guess I just was mentally at peace with losing my hair so when it started falling out at two week mark I went and had my hair buzzed. Sure it isn't a great look but it was way easier, less messy and I didn't want the prolonged process of it falling out surely and steadily and looking increasingly bare. I have some nice hats ordered from TLC catalogue, a wig I have yet to wear and a halo that looks pretty decent under a hat. Believe me you will get past the worry and dread of losing your hair . I hope mine comes back but I will be having a bilateral mastectomy after chemo is over and that will be more painful and I mean literally more painful than the hair loss and my boobs won't come back as I won't be having reconstruction. I want to avoid radiation and I made peace with losing my boobs way before I did losing my hair. I guess the point I am taking forever to make here is that all of you brave women will march on through this chemo cold caps or hair loss and all and things will start to look a little better with light at the end of the tunnel. There are some amazing and inspiring stories and advice to be gained on these sites. Keep posting ladies because we are all interested in hearing how you all are doing and wishing you well!
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It's fabulous to hear how everyone gets through this but I am sure we all keep thinking this isn't really happening to us! (Keep waiting for the call where they say it's all a mistake and I don't really need chemo!)
I have personal moments of pity but I tend to talk about having breast cancer to others - I guess to make it more real to me and to kick me into reality. It is interesting that a lot of people I've run across do not really understand how chemo kicks your butt unless they have had it or been close to someone who has!
It is hot where I live (AZ - it's a dry heat!) but I've been in the upper Midwest all summer and it has a cool summer, so I might not like the wig. Come Oct 1st, I will have to figure it out! Thanks for sharing your journeys
Cinderella - I like the halo idea. I did not know that was what it was called. Did you get it online? I look forward to hearing how this goes for all of you. It is great to have all you wonderful ladies out there! Have a great Friday and weekend!
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Teacherhikermom - are you going to wear a wig to school? No hats are allowed in school (on kids - but no teachers wear them either!) so I think a hat or scarf would be out of place and draw more attention. Just wondering your thoughts. Maybe the steroids will puff out my face and I won't have so many wrinkles!! Gotta think of any tidbits of good that we can!
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I don't plan to wear a wig to school. Hats are not allowed here either. It is not ideal, I have to admit. Either bald or in a hat people are going to see me and ask a lot of questions and I am going to feel self conscious and weird. But I can't do the wig thing. It is over 100 degrees here this time of year and I would be so uncomfortable in a wig.
Re: denial, I keep thinking, what if this is just all a terrible bad dream and I wake up relieved and tell my husband, "I had such an awful dream!" But it is not, somehow this is really happening. I am really going to get chemo and be sick, and have surgery and have to get fake boobs (never thought I would go there). How can this be MY life? This is supposed to be like, something that happens to someone else and I feel really bad for them and help out when I can. How can it actually be me?
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Hi everybody. New on the boards. Waiting for a chemo start day, but it should be in the next week or so. The info on these boards has been so valuable moving through this Dx. Thanks for having me
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teachermom- I felt the exact.same.way. Here I am planning my wedding, doing well at my job, thinking about having kids in two years, then wham! A lump! This wasn't supposed to happen to me. This is something that happens to old people. There must have been a mistake on the pathology...
I'm mostly through the denial phase now and it does get better. But I just wanted to let you know you're not alone
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Welcome AnnieB43,
We are so glad that you have found help here and we hope that you will continue to stay connected and keep us posted. We will be sending you lots of hugs as you get ready to begin chemotherapy. The Mods
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from what I've read chemo is effective for reducing recurrence at anytime. I knew a girl years ago that didn't do the chemo so she could have a baby. Then once she was done breast feeding she went in for chemo and rads. Of course, if the surgery gets all the cancer we aren't obligated to do anything else at all. Chemo will only reduce my chances of recurrence by up to 2%, but with half my life in front of me I'll take every percentage point I can get.
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from what I've read chemo is effective for reducing recurrence at anytime. I knew a girl years ago that didn't do the chemo so she could have a baby. Then once she was done breast feeding she went in for chemo and rads. Of course, if the surgery gets all the cancer we aren't obligated to do anything else at all. Chemo will only reduce my chances of recurrence by up to 2%, but with half my life in front of me I'll take every percentage point I can get.
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Given that I had clear margins and sentinal node only was positive (although with lymph vascular present), I'm a little confused and don't know what to think. I was was told surgery removed all the cancer tumours (along with all the breast) as well as the lymph nodes so I was feeling pretty confident that this chemo treatment is mostly preventative to reduce my chances of recurrance. I'm I wrong? I sometimes get reactions from health care professionals that they are treating me with kid gloves. I'm not one to take well to coddling and I prefer that they just give it to me straight. So, am I fooling myself with believing this will be a crappy road ahead but with a good outcome in the end. Or is it worse than I think? ugh...I hate this.
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greytmph2 and AnnieB43, welcome to the group. We are glad you are here even though we know you don't want to be. Will add your names to the list.
greytmph2, any idea when you will be getting chemo? Or are you choosing to put it on hold? I know what you mean about the drugs and particularly the side effects. Seems like while they can control the nausea better it is still a huge SE, they just throw another drug at it.
As my chemo date approaches I am becoming particularly anxious. At the same time, work pressures are increasing so I trying to bury myself in work but am finding that just makes me more anxious. My plan, with doc's blessing, will be to work all through chemo, but honestly I just want to curl up on the couch and cry. I feel so vulnerable. How are others dealing with the wait to start?
Hugs to all;
Octogirl
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I am dealing with impending chemo (6 days and counting) but preparing. I have gathered all my necessary meds and have a med schedule developed on google calendars. I have lemon drops and life savers, tissues, a humidifier, mouthwash, eye drops, hats, lining up people to help with child care, set up subs for all the days I need off work, comfy outfits, a new TV show to get addicted to, list of funny movies, two new books, increased my texting minutes, talked to my oncologist and my surgeon about any lingering worries (I seriously have the kindest, most invested oncology team). My husband is just finishing his book "Breast Cancer Husband" which has been quite beneficial for both of us (prior to reading he had no idea how to deal with my panic/despair/extreme anxiety, now he has a framework for how best to respond). I am as ready to go as I can be.
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Are any of you going to be taking neupogen for the low WBC SE? The potential side effects sound downright terrifying? I have to admit, I don't feel ready for this at all...
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I have Neulasta prescribed. And I'll give it a shot (no pun intended)
Most common side effect is joint pain, not nice.0 -
Neulasta and neupogen discomfort and risk need to be balanced against the risks from low WBCs. It may be worth looking at previous chemo months to see previous groups' experiences.
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I just started chemo on Tuesday. I'm second guessing already, because I feel so exhausted. Feeling down.
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It's the bloody waiting that's giving me so much anxiety. I currently don't have a start date because we're waiting for insurance approval. Maybe Monday I'll hear something.
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LindyC, if you had node involvement I wouldn't put off chemo. Just my opinion, but why take the chance there is something floating around no one saw? I feel like its worth it to have a few months of chemo ick to kill off all those demon cancer cells. If you aren't comfortable with your doctor's either tell them to just give it to you straight or find another oncologist. I told mine to never leave out a single detail.
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Regarding waiting to do chemo - I had my surgery July 6th and am waiting until Sept 21st to start because I wanted to finish my summer. My MO said within 90 days after surgery was the window in which to start it. I am on letrozole as an added defense because I was waiting.
I am having all the same thoughts as many of you about poisoning myself when I feel great! My MO said I had a 50/50 chance of it spreading and the chemo would give me a 93% chance of it not. The chemo (from what I have figured out) is to prevent any of those nasty cancer cells from getting into our systems or to eradicate any that might have escaped from the tumor. It is mind boggling to think of making ourselves sick though. Hang in there everyone. I appreciate all your updates...I'm not looking forward to jumping in.
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