Starting Chemo April 2016
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VSB - I had my daughter with me but felt fine after. I drove home - even went out for lunch. But, as others have said, it's best to have back up. My nurse suggested having an emergency back up if I do drive myself just in case.
Annie - are you still in the chair? I just started - had my anti-nausea meds, and i'm now getting my steroid. Then it's the stuff that makes me pee red. Then it's the quick one, and I'm off to grab a bite to eat.
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NUMB
I'm so glad that they got you 'sorted' – I like that expression a lot. Please don't feel you can't bring the hard parts here to this forum! We all need ALL of it and we're here to support each other good and bad. I admit sometimes it is hard for me to read and take in the suffering as it scares me, but its part of being there for each other, ya know?
7 or 9
I'm glad that you are feeling better and that you like your regime. You make me laugh "I would choose to be unconscious…" I only have to have the Benadryl this time around. I had my bottle of Lexapro (Attavan) handy but didn't need it. The cold caps are not comfortable and my neck was starting to hurt from the pressure but I feel better now that I am home. We're done in 2.5 hours. Are you tracking your symptoms and reactions? I had a nurse tell me to do that so I can know what my patterns are and what to expect…and to track the feel good days too.
VSB
I bet you'll be fine. It is very nerve wracking and anxiety provoking to not know how all the meds are going to impact you. I have to reiterate what other woman have said – for most of us, the getting of the chemo is pretty easy. They should take it slow the first day with you. I took some Tylenols but that was all.
Cody
Great to hear from you and I love your new attitude. Its so true that we don't know how and when the SE will hit so we have to just proceed ON! I think it's the KNOWING that it's the dread chemo. Cause usually, we just keep going through all sorts of ailments that come and go. Have a great time at the concert! WOW.
Bagger
Great to hear from you and since I am TCH, I really appreciate the info and the tips. Did not know these things about Taxotere. I think I had my eyes closed and was relaxing to music during some of that drip. I'm glad that you are past the worst and that you did okay. Can you explain about the tingling with the nails? I read something awhile back about people icing hands and feet and chewing ice chips but I just couldn't get that together today and didn't read up on it.
Agharta
Glad that you are faring pretty well. I am super paranoid about being around sick people too. I sent a client home in 5 minutes yesterday who showed up really sick.
CJ
Well your gorgeous wig is on the way and it is time for your switch out! I bet that you will rebound and be telling us all the styles and things you are having fun with once your are hair free. I think you'd make a fabulous redhead with purple tips. Luv u!
Welcome Missah and anyone NJR thank you for thinking of me and wishing me well.
Hey all – what is Nadir?
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Whew! My treatment start date was moved to tomorrow, April 15. This is my second rodeo and I find myself to be more excited than scared. I'm a little bit nervous as I'll be treating at a different clinic and won't have the nurses and staff I am used to and the layout is a little different. I hope I get a window seat!
I'm excited too that I got into a clinical trial that looks to be pretty promising for Stage IV.
Anniekaja, I'm sorry I missed you today. I hope all went well! And yes, ditch your MO like a bad habit. If he can't handle a little question and answer period without getting all defensive, then he isn't the one for you!
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Bagger - I found that things that have a "sharp" taste like vinegar really helped perk up the taste buds the last time I did this. I pretty much used it as a condiment on everything! Using plastic utensils really helped as well.
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MattieFang
Good luck tomorrow with your new team. I'm so happy that you got into the new clinical trial! They are really on the cutting edge of this disease and the new trials are very promising and exciting. I'll be thinking of you and sending you good energy.
Annie
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MattieFang - Yes! I made a simple cucumber salad with vinegar and I do taste and enjoy it. I'll keep that up.
Anniekaja - Nadir is the worst point for us, post infusion. One that is good to get past as the rest is uphill. Also, here is a list of Taxotere side effects: http://www.breastcancer.org/treatment/druglist/taxotere -- such fun. I did get many of these like nausea, low white blood cell count, constipation, taste changes, fatigue, watery eyes. I didn't get any numbness in the fingers and toes (neuropathy) for round 1. I'm not sure if wearing the gloves and socks for first few days helped with that or not. I'm going to try to limit light exposure to my eyes in first few days for round 2 to see if that helps with the watery eyes that hits me around day 7. We'll see.
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Numb - thinking you of girl! Hoping the cloud lifted and you've come out the other side feeling better. Hugs. And yes, I'm going to reiterate - this forum is to share everything. The good, the bad, the ugly. Please share your thoughts, feelings, etc. We're here to boost you up.
Annie - glad you came through with shining colors. Yeah Nadir can be a bear, but hopefully it's short lived. My tastes really don't change until I hit Nadir (at least last time and it appears to be holding true now. They get a bit muted - like they do when I have a bad cold, but things still taste the same. I hit Nadir and all bets are off.
Mattie - WELCOME, sorry you are here for a second go around. Looking forward to hearing this new treatment. I love, love, love the advances we are making! I've done so much fund raising for cancer research, that I hope some of that money found it's way for research grants. The Avon Walk does donate a portion, but also donates to local places for things like free wigs for low income, and help for treatment. I've also done the Livestrong ride twice. Anyway, I love your enthusiasm! And thank you for the tip on sharp foods - I wonder if that's why Greek food seems so appealing to me right now - sharp flavors.
Bagger - glad the salad tasted good! I'm craving Greek food this time, especially olives - I'll bet it's for the same reasons.
Round 2 in the books and other than the increased shedding I'm feeling pretty good. Allergies are bad here, so I am dealing with those. Good thing I bought a boatload of tissues from the list.
And Claritin will be doing double duty today. A friend came with me yesterday and we actually had a good time. Then went lunch after. Turned in to a surprisingly nice day. We had the nurses in stitches. I'm always warned that the steroids will keep me up all night, but I fell asleep on the sofa at 7:30, got up at 9:30 and slept the night with only one trip to the loo (as Numb would say). I'm bloated so either tonight or tomorrow, I'll be visiting the loo at lot more. I'm going to an event tomorrow - Pints and Pups. It's a fundraiser for Silicon Valley Pet Project and as I do a lot in rescue, I'm there to support the team, see cute pups and have a beer. They also commission local artists to come in and make beer mugs and other pottery and sell it there. I got a really cute beer mug last year. I'll probably buy one this year, too. But if I get tired, I'll shamelessly pull out the cancer card. A friend is driving, so I don't have to. Happy Friday, everyone! Hope y'all have a great weekend.
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OMG ! I got the Zofran and I feel a whole lot better since taking it. I was able to go out for coffee this morning and go for a walk. It feels so good to not feel nauseous. So maybe I am over the worst now. I was beginning to think I would not be able for the next round, but my next round is not until 29th April so I should be ready by then.
Congrats on round 2 Christine and glad to hear you are feeling good. Don't worry about your hair, that is the least of our worries. Does round 2 make allergies worse ? You have great energy and hope you enjoy that event tomorrow.
Hope you all have a good weekend.
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Numb - California's pollen levels are at record highs because we've had a lot of rain (yeah! Needed!) and a relatively warm winter. Nothing to do with chemo or anything - just the outside.
So glad you are feeling better and that Zofran is helping you! I took mine this morning! Sounds like you are around the bend and on the mend. Positive vibes to you! 0 -
Well it looks like I am officially starting AFC on a Tuesday/Thursday schedule every three weeks for six cycles starting April 26.....so is it okay if I join the April group? Everyone here is so supportive and with POSITIVE attitudes I love!
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Good ideas here about getting past the taste thing. I had no taste on Wed. and now it's just rather muted. Found myself craving onion rings! - think I am just looking for something with a strong taste. Salads with vinegar-y dressings are a good idea.
Glad you got all sorted out Numb - It sounds like you had quite a day but it sounds like they went above and beyond to make sure all was well.
Mattie - Congrats on getting into the clinical trial.
CJ - I think day 14 seems to be the magic day for the hair to start to shed! I'm still a good week away and am paranoid about washing my hair too much - like it's going to make it start sooner! I usually wash everyday and have gone to every other (like it's going to make a difference!)
Waiting on my steroid crash to hit but talking myself into it not happening!
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NJR - yeah, I washed my hair every other day, and nope, no real difference.
Oh well. Remain positive. I did not have a crash from the steroids - but I did when I hit Nadir. It was short, so that's good. Hey a tip for all going au naturael with the hair loss - I talked to my friend Julie (who is has gone through this - and is my advisor - she's also a member of the FB group - remember if you want to join, PM your email address as it's a secret group and you cannot find it) today and she told me not shave completely but leave something like a 1/4 of inch of hair to avoid ingrown hair. You can rub a really soft topical lotion on the remaining hair a couple of times a day to really help the rest fall out. If you are switching to a wig right away, have a soft cap under it so the hair that falls out doesn't get caught in the wig and make you itch more.
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From bagger's linked list, here was my experience with 4 rounds of TC, in case it's helpful. No cold-capping or mitts, with Neulasta after every infusion:
low white blood cell count--no. It was little low (as were RBCs) at my first two post-chemo MO visits, and now is back to normal.
susceptibility to infection--no
fluid retention--no
allergic reactions--no
hair loss--yes, and it has grown back.
numbness in the fingers and toes (neuropathy)--yes, slightly, and it resolved after chemo. I took L-glutamine with my MO's agreement.nausea--no
vomiting--no
constipation--no, and I didn't take anything to decrease bowel effects.
taste changes--yes, slightly
fatigue--yes, slightly
muscle pain--no
bone or joint pain--yes, first couple of days after each treatment. Claritin helped.
nail changes--yes, slightly, didn't lose any nails, but they were cruddy and still are somewhat crumbly and have air pockets).
mouth or throat sores--no
watery eyes--yes, treated by ophthalmologist with Systane Balance OTC drops. Still an issue at times, but not bad.0 -
Thank you KSusan! I know individual reactions are can be different/unique but I get so sick of the standard/study averages. Hello....already fell through the 1/8 women w/ bc. Fell through the I'm too young bull. Fell through the recurrence net too. Real people, real experiences. I've got one TX down and 3 to go. Again...THANKS!
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Bagger
Thanks, I'll read that all up later. Are you doing the cold treatment to prevent mouth sores or neuropathy? if yes, what are you going to do? <did I ask you that already?
>KSusan
Thanks for sharing your positive experience! Yay!!! I really appreciate that. Its hard to read all the negative SEs but I want to be informed on what I should be doing to prevent stuff. Did you chew ice chips or use the ice packs on your feet/hands? What round to start doing that? I couldn't handle any more yesterday.
7/9
Yes, I agree – it so individual and each treatment is unique to our unique bodies and biochemistries. For me, I am just trying to be very mindful each day and welcome what comes (right now, its coming OUT hehehehehe). I'm working on doing a lot of planning and self –care, building my positive attitude and exercise – walking at the lake yesterday after Round 1 was awesome. I'm heading there with my doggie soon.
NJR
The taste changes will be interesting…that's funny about onion rings. Although this passes, last night I wanted to get Thai food and a Dominos pizza, as if I'll never be able to taste again! I'm feeling hungry so I may go for the Dominos later. I had Tom Kha Guy soup last night, my favorite.After chemo I had mashed potatoes and bites of meatballs and that was very big comfort food.
Hikerchic
Welcome! You will fit right in. I love hiking. I live in the NW. Sorry you are hear but glad you are hiking this trail with us! Ha!
Yay NUMB!
I'm getting all my anti-everything meds all lined up. My nurse said don't hesitate to start them. I had a tiny twinge of queeze last night and started the Zofran.
NUTRITION!
Today I'm going to the Natural Foods Co-op and getting veggie smoothies with tons of kale and beets to freeze at home. I'm just going to get several large drinks and then divide them up into smaller zip lock baggies and plunk in the freezer to grab when I go back to work next week. And ginger root with organic lemon and some ready box ginger tea. Tons of nice things on that shopping list.
Wish you all a good day on our journey.
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Just a reminder on the FB group - you should have received emails with the link to the group. As it's a secret group - you cannot search for it. If you have not received an email - check your SPAM folder (FB gets a lot of complaints and some email providers sends things like this automatically to spam - I used to work in the industry and Facebook was my account.
). KSusan - thank you for that!! I'm following pretty closely to you so far.
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I didn't use cold caps, ice packs, mitts, ice chips. My MO was concerned that in restricting circulation, they might harbor stray cancer cells. Even at this time last year, there wasn't the acceptance of these practices that's starting to build now. If my neuropathy had been ramping up, I'd have revisited it. I had no mouth/throat problems. I rinsed and gargled with warm water, salt, and baking soda twice a day. I was a little concerned about the risk of permanent hair loss with taxotere, but actually wasn't that worried about temporary hair loss. I thought it was interesting more than anything else. I wore big earrings and patterned scarves. If I'd known about henna decorations on the scalp, I'd have done it.
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Hello All, this is my first post ever. Just wanted to introduce myself so I can get in on the discussion.
You all are so amazing at BC.org and I'm looking forward to getting to know you. I started my first round of chemo yesterday. I'm scheduled for 6 rounds total, to be given every three weeks. I feel great, but I'm worried about all the side effects kicking in. I already have a lot of flushing on my face and chest -- anyone else have this? Looks like sunburn, but I like it. Gives me some color. 0 -
infusing now. The study drug was first and took an hour. Then a 30 minute intermission. Now Abraxane and the rest of my saline. It's going well.
Henna on the scalp? I'll have to look in to that!
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Juskym11 - Sorry you're joining us, but welcome to the club! Regarding the flushing in your face/chest, I had that too but my doc said it was from the steroids rather than the chemo. My doc was funny - she said not only will she 'do my hair', but she's taking care of my make up too! If you don't mind me asking, what regimen are you on? I also get my treatments every 3 weeks for 6 doses. Mine is TCHP (Taxotere, Carboplatin, Hercepting and Perjeta). For what it's worth, I started on Monday and have been feeling pretty good since. Staying hydrated and proactively taking the nausea meds was a big help there! Welcome and good luck!!
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Hi Jusky - welcome! As PDR said - sorry you have to be here! What is your chemo drug routine? I got flushed, but I am pretty good. Follow their instructions, take your anti-nausea pills and know there were be days when you feel really weak, know there are days when food will most likely taste funny. And let yourself feel. I find a positive attitude goes a long way. But this is a big thing, so some days a positive attitude will be easier than others.
Mattie - let us know how you feel! Thinking of you!
Ksusan - My friend Julie did the Henna - a picture is below. She's a trip. She's going to be out my way in June, and I have nephew here who is an artist with henna, and he's offered to henna both of our heads.
(She's going to shave her head again for me - good friend). 
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NJR - you should be all set. My private message box is done for the day... grrr. I'm not liking that feature. But I also sent you a PM. Feel free to unfriend or keep me as a friend if you don't mind lots of photos of animals and weird news. I'm harmeless.
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Hello juskym!!! Well to the Chemosabes! Yes, I had the flushing on my face -
MattieFang - I just love the LIVE reporting from the infusion centers!!! Thinking of you.
Pdrchick Sounds like you have a great MO! Nice.
CJ - Wowzers! That is AWESOME! What a love to gift you with that art.
Well its about 8pm of my day 2. I did well - I'd describe it as feeling "weird" - little bits and moments of some burning tummy and some tiny nausea that went away with small bits of food. YES, I admit it I craved and had Dominos Pizza and that was not the best choice...emotionally, mostly good - a tiny bit of feeling a panic about BC.
My favorite part of the day was about 2 hours walking this gorgeous lake near us with my dog. I felt spiritually centered and connected - (might be the double shot of Ambien last night
. I took off my hiking boots and socks and stood on the soft earth in my bare feet, smelled a handful of moss earth, touched the old trees. I could have stayed out there forever but alas, had to come home. I also had another acupuncture appointment and went to the Food Coop, our natural grocery store. My fav: Kombucha Ginger Ale. Rest well Chemosabes!
A
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KSUSAN - Gosh kSusan, you really got me thinking there about not freezing any parts of the body during chemo for fear of restricting circulation and thus harbouring stray cancer cells. I would be afraid now to freeze any part of me for that reason. Thanks for that tip. I also notice that you only rinsed with mouthwashes twice a day. I was recommended to do that 4 times a day and really I think it is too much, and is making my mouth tender.
JUSKYM11 - Welcome to the group and yes I had a flushed face for about 3 days after the infusion and then it went away.
CJSHARMA - Is the second round any different to the first ?
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Annie - glad to see your doing well. I'm looking forward to our weather warming up here in PA to get some walking in. (I have no motivation to be outside for long unless it's close to 70!)
CJ - that henna art is amazing - I know I wouldn't have the guts to do it - tend to be a keep to myself type - but that's beautiful.
Mattie - hope you're doing well today.
To those who've done second rounds - any difference in SEs? I was wondering if this will be cumulative or can we expect similar results to what we had the first time around.
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Hi Ladies,
I have not been able to keep up with all of you as much as I wanted to, but know I'm still here to help support any of you when I can. Because I've been feeling good—better than I have in years, I have been making the most of it and of course working a little extra to make up for time when I may not feel so good.
Since I've had the tumor removed (early Feb) I have been feeling better and better. I guess I just didn't realize just how bad I felt prior to. I just thought it was aging or the beginning of menopause. Despite going through 1 cycle of treatment so far and not feeling great for about 5-6 days after, I have been feeling wonderful all the other days. I have energy and a very clear mind. It's been so enjoyable. My second round of treatment is next Friday so I will keep you all posted on what I experience.
CJ - Wanted to ask you about the hair loss… as I think it may be starting for me also. I washed my hair the other day (trying to go w/o washing every 2 days) and more hair than normal did fall out, but nothing alarming yet. However, my hair follicles seem very sensitive and I wonder if you're experiencing anything like that? I'm prepared for hair loss with a wig and some cute caps, but it will still make all of this very real for me.
Numb - glad you are 'sorted' out and back to feeling better.
To all the new people who have joined, really sorry you have to be here, but hopefully we can help you with tips and support just knowing we are all going through this together.
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Numb and NJR - so far, no real new side effects except the massive shedding - which is expected now. I did have a little more constipation, but that seems to have resolved itself. I'm expecting day 5 and 6 to be the real test. My MO basically said that we can expect similar but slightly more pronounced symptoms each time. However, the nausea should remain consistent. If you didn't get it the first, you should be fine. It's just tiredness. We'll even start to have suppressed red blood cells, so we'll feel a bit anemic.
Annie - I think a Domino's Pizza is just fine. And yeah - that oddness in the tummy is normal, too. I get that. I wasn't really hungry yesterday. Had a healthy smoothie as I was running out the door to meet my friend at 2:00! I was hungry at that point, but had to run for my shot, then came home and another friend delivered lasagna, so I had some of that, then finished off with Nibbles with Gibbles. We can't get those out here - my sister sent me 4 bags.
So I wasn't much better. Good job on the 2 hour walk - that sounds so soul refreshing. 
Numb - how are you doing today? Are you out of the hospital? I was worried about you!!
NJR - I probably won't wear it out in public unless I'm with Julie. But just knowing it's there is kind of cool. Manu, who is my nephew is a true artist. He's here in the US working for Apple. His wife is just so sweet, too. Great couple.
I have a lot of hair, and I think I'm about the half way point with the shedding. I was told it would come out in clumps, but I'm not seeing that - just basically I can run my fingers through my hair and come back with enough hair for a small mammal. I'm going to Pints for Pups today - I don't think I want to risk the hair deciding to come out in clumps at the event (that would so happen to me). So I'm going to chop it off this morning.
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CJSHARMA - thanks for the concern. I was never kept in the hospital, just there for 5 hours getting tests done as a day patient. All this was down to the fact that I thought I was having heart trouble, which presented itself with mild pressure on my heart and my left arm having pins and needles with numbness in my hand, and they did all the tests just to make sure it wasn't a heart attack. So it would appear now, from what I have read, that these symptoms are quite common when on AC and I have heard of one woman who actually did have a heart attack while doing chemo, so I was paranoid, but I have settled down now. Today is my best day so far. I am almost back to normal.
I don't like to hear that the 2nd round symptoms are more pronounced, that scares me. Have you experienced this so far ?
Hope you have a nice day at the event and I guess you will be wearing your wig from now on. I have to get mine cut to suit my face but have to wait until the hair falls out first.
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Numb - My second round is so far better than the first because I know what to expect and know how to react and medicate to it. I'm perfectly fine - just a little weaker than normal, but I was that way before. You had a lousy round 1, so I'm hoping your round 2 is much better. And glad you did not have to spend too much time at the hospital!
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CJ - Funny that you get sent Nibbles with Gibbles - definitely a regional thing! I'll occasionally send Tastykakes to friends who moved to CA since he can't get them there. Have fun at your event tonight and rock the new hair.
I'm finding I have to keep reminding myself that I have a suppressed immune system. Since I feel fine (which is the last thing I thought I'd be saying when I started all this!). I have to try to be conscious of hand sanitizing after I come out of a store or handle money - things like that. Just trying not to get overly paranoid about germs though.
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