Anyone on just Taxotere and Cytoxan?
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I'm starting the Taxotere and Cytoxan regimen after New Years. Both my oncologist and surgeon tell me only about 10% lose all head hair with this treatment. That's not what I'm discovering in my research. Did anybody NOT lose their hair? I just want to be prepared and make plans to deal with the side effects. I'm also concerned about the peripheral neuropathy. --AnnieGranny, Stage IIA, IDC
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Anniegranny- I lost most of my hair by day 16. I have hair 3 rounds and still have just a little peach fuzz. As far as the neuropathy, I feel it sometimes in my toes (no real problem0. I have no issues with my hands which is good because I'm a hygienist.
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Anniegranny, I think it might depend on the definition of "all". If you mean all, as in every single darn individual hair, well, no, I didn't lose "all" my scalp hair ... that is, not until about 5 or 6 weeks after my last (4th) dose of Taxotere & Cytoxan. About 80% of it was gone by shortly after my 2nd infusion (say, day 25 after tx #1); I lost a little more after #2 and a little more after #3. By the time of infusion #4, I was pretty much shiny-bald, except for a very small number of fine, scraggly, individual hairs around the sides. Wouldn't you know it--they fell out as my new hair was growing in. Poor things...
Any onco or surgeon who claims those dozen or so stragglers constitute "not losing all my hair" ought to be held down by 5 of us and shaved smooth, I say. Even my onco, who does this a lot, told me I would lose all my hair on TC; and she was right.
OTOH, it is possible that some women retain "peach fuzz" or a fringe around the sides throughout their TC experience. It's hard to say, for any one individual. Odds are, though, that it will (almost) all be gone by the last tx. Bet on that outcome, and plan accordingly. If you're prepared, it's slightly less traumatic.
Despite how upbeat I sound right now (5+ months out from chemo, with 1+ inch of thick, curly hair), I really hated it when people said, "Oh, it's just hair!" or "Don't worry--it grows back!". HATED it, I tell you. So, I won't say that. Sure, it does grow back, but gosh it's hard to handle in the meantime and mine is growing back awfully slowly.
You can do this, though. The women here will help you through it.
Hugs,
otter
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Hi, Anniegranny ~ Sorry you're joining our ranks, but you've come to the right place for advice, encouragement & support from a great group of women.
I want to add something to what Otter said about hair loss. It's not just losing your hair, which is definitely traumatic when it's coming out in clumps -- but it's the fact that you now look like a cancer patient that is so difficult, both for us and for our family members. Yes, it's just hair and it will grow back in a few months. Logically, we know that, and we know that it's not nearly as important as kicking the bc. But, it will probably be the first time you look in a mirror and feel like a cancer patient because that's what you look like, and I think that emotional challenge can be tough, especially when you're tired, pale, and achy on top of it.
As far as the neuropathy, B6 (which I think I learned about from Lani here) is wonderful. It totally stopped the early symptoms of neuropathy I was having after my first tx, and I've heard that from others, as well.
Annie... How're you doing? Deanna
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Sandra ~ it's not so bad. I take the car in Monday, insurance pays everything over $250. I'm getting pooped but it's been a nice couple days.
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Yep, Otter's so right! I lost 98% of my hair, and never had it shaved because I was determined to keep those few stragglers.
And she's right about the "1/2 inch per month" rule too -- hah, more like 1/2 inch per 3 months! I've been taking biotin and recently found out that I need to take silica along with it for optimum results. Funny, when you're un-naturally bald, you'll try anything to make it grow!
Anyhoo, it's so true that misery loves company. Thank goodness for bc.org!
By the way, biotin +silica is also supposed to be good for regrowth of nails. Seems to be working for me.
Cheers, Linda
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Anniegrannie--This picture of me is at about 11 weeks post chemo. My hair is coming in nice and thick, but it grows VERY slowly, more like 1/4" month. I anxiously await being able to go about wig free. I'm not certain whether it would have all fallen out, as I couldn't stand it, and had my hubby shave it all off before my second Tx. Aside from the hair loss, my main SEs were fatigue and low blood counts. and sore mouth complaints. I was lucky in that I did not experience extreme muscular achiness or peripheral neuropathies.
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I had a BAD Thanksgiving. Took my mom to the ER at 10:00 PM Wednesday night(she insisted that we make the pies for T-day dinner at my Aunt and Uncle's BEFORE she would let me take her in). She turned out to have early stage Pneumonia. We got home at 1:30AM on Thursday. The dogs got into 2 of the 3 pies while we were at the ER. I had to be at work on T-day at 6:00AM. I was running a fever (low grade) felt very emotional,(my Dad died last May, this is our first Holiday without him). Neither my mom nor I felt like going anywhere for dinner, so we ended up staying home. Another uncle, bless his heart, brought us some leftovers from their dinner. I had to work today too, and still felt sleep deprived and yucky. THEN I go to the bathroom and see that AUNTIE FLO has returned from a 8 month hiatus(due to Chemopause from my 05 bc). Well, that explained some of what I had been feeling. But GOOD GRIEF!!! Enough is enough!!!! I figured that having chemo again would be "the end" for my ovaries, apparently not!
Thanks everyone for listening to my pity party. It will be interesting to see what my blood levels are on Monday.
Mary
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Hi Mary:
Sorry to hear of your bad day. When it rains, it pours. Hope your mother is feeling better. The first holidays are always so tough after a death. My Thanksgiving wasn't bad except for "metal mouth". I was so happy my son was home for a couple of days. We hadn't seen each other since Aug. before I started chemo so it was very emotional.
Peeps
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Aw, Mary...
{{{{{{Mary}}}}}}
otter
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Mary,
That definitely rates as the worst ever TG story, but as the years go by, and time erases the pain of it, it will probably become one of the funny family stories (let's hope). I can top it though with the story of the TG that my inlaws never showed up or called (this was before cell phones). We later learned that my mil had died. We waited and waited and waited and finally (hearing nothing from them) worriedly ate our cold dinner. Then my sil went into labor and my niece was born! That was a very strange, sad day.
There was also the TG that we forgot to put the sugar in the pies!
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Hi everyone!
Hope you all had a nice Thanksgiving mine was nice, basically my mornings are great and then I am tired into the evening.
Monee : I know what you mean about the hair.... is very emotional and everyone says ohhh it will grow back and I just want to scream and say I know that but it is my hair falling out....So on Tuesday before 2tx my friend is going to either shave it off or cut it so short like to my scalp. Havne't decided yet. I am alittle nervous about the next tx hopefully I won't have the same reaction. Then on top of it my period started, I'm like hey i thought I wasn't supposed to get this anymore LOL! Wishful thinking I guess. Don't get me wrong I am thankful for having my life but these side effects suck.
I hope that everyone is feeling better and as we push forward we are blessed to have each other!
Have a great day!
Love
Linda
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I am very surprised to here that adriamyacin seems to be out of the loop now. I thought that was the one that caused hair loss, but I guess I was wrong, reading these posts. In any case, it's all worth it!!!
Two years since dx and I am doing great. Had AC, taxol and herceptin, rads...the whole kitchen sink, and life is sweet now.
Hang in there, you will come out healthy on the other side!
Eileen
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Hi, Lindy58. I got my first TC last Friday at the Moll Center, is that where you go? Haven't had too bad of a time this time, just waiting for a new symptom each day. The doctor promised me I would finally go through menopause, but just like you not yet. Sometimes I feel like someone is playing a joke on me.
I have been reading this topic, if you all don't mind, may I join your TC club?
Sandy
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Hi Everyone!
I hope you had a nice Thanksgiving. Finished my third treatment on Tuesday. One more to go. I
get so excited every time I see your picture Sandra, because I can't wait to get the hair back! I hope you are feeling okay Annie!
Denise, my wbc's were a bit elevated before my second treatment, but my onc said it may be related to the decadron? I never had a problem. I hope you are feeling fine
Deanna, I have been meaning to comment on your picture, you look great!
Mary, sorry to hear about Thanksgiving. I hope your mom is feeling better!
Good luck to all who have treatments this week. We can all do this one step at a time!
Love,
Elizabeth
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Lindy and Sandy - I will be starting my first of four TC tx at the Moll Ctr on Wednesday -- are either of you there on that day perchance? I did have a tour of the "suite" last week--it's not the Marriott, is it?? Am not looking forward to it....obviously. Getting my hair cut Tues nite and getting my wig. Ordered a halo from tlc.....I also have not heard of anyone who kept their hair....maybe it's just the onc way of trying to give you hope! I am sure each one of us thinks "maybe it will be me, maybe me, and I won't lose my hair".........
Brenda
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Brenda- I think I was pretty typical. Day 16 it starts coming out in clumps. Good luck with your #1 and with your hair. I have #4 and final on Friday. Then on to Herceptin for a yr.
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anniegranny ~ Ditto what otter said, I have peach fuzz too, but it's dark peach fuzz because my hair is dark. Like a newborn. I kept my eyebrows and lashes, and I like that!
Deanna ~ I'm doing fine! Called the insurance, called the car shop, will put some water into the busted radiator Monday if I feel like it and drive it over there, and the guy will drive me back. I will have new bumpers, there were some small dings on there that now will be gone ...
About the HAIR. It is such a big thing, altho we know small in the long term scheme of things. I got all these lovely scarves that I wear around the house, but the only thing I'm comfy in outside are my hats - 2 out of the 4 hats I got work really well.
It is just because I feel I look like a cancer patient in the scarves and caps. The hats, I've always worn hats. Lots of people wear hats who aren't cancer patients. So. It's just so individual.
I have had no neuropathy! I guess that's something to celebrate.
Oh, my Mary, what a horrible Thanksgiving. I hope your Mom will be okay, and you too. Those low grade fevers are worrisome, I've had some and they usually go away but I was sure I had something that my beat up immune system wouldn't be able to fight. Take care of yourself, okay!
Eileeng ~ Adriamycin is a very powerful cancer drug, it's just that doctors are beginning to use more targeted therapies and wondering if Taxols can't begin to replace it for some patients. There's one line of thought that Adria is better for HER+ girls but Herceptiin works really well too and has fewer side effects (I think). Adria may not work for HER- ladies at all, but there is this big discussion going on now about it.
Be happy you got some very powerful cancer drugs, don't look back. They will keep coming up with new things that are better and have fewer side effects than what we are taking now, and the feeling will be oh geez why couldn't I have gotten that, but if we are here and kicking now and able to take the latest and greatest thing that is GOOD.
Sandy ~ always WONDERFUL to have a new gal in the club!!! There are never too many!!! This is a great place for understanding and help with all those little symptoms.0 -
Hi Annie,
I really LOVE your Hat!! So Cute!!! Sorry but I have been wanting to tell you but feeling like crap for the last several days.
Sorry about your Accident. Glad your okay!
Jerri
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Hey TC veterans, does the metal mouth taste last all the way through to the end of the treatments? Or does it come and go??
Mary
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Mary, the metal mouth will be pretty much gone by the 3rd week of each treatment, thank God.
Otter, I'm with you on the hair. I have totally hated it every time I look in the mirror for the past 4 months. My kids and spouse are used to it, but I'm not! Maybe in another month or so, I can stand to look at it. Even though I'm over chemo (10 weeks since last tx) people in stores still look at me funny. Some are very soliticous (can I carry that for you?) which is funny since I have all my normal energy. Guess I have to be the cancer poster child for a few more months.
Elizabeth, hard to believe you have only one left. I remember when you first started! Yay!
--Lani
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I have found much support and very kind women on this site. I read for a month then finally had the courgage to join in. By the time I had my first chemo I felt like I had attended cancer University. I didn't know about treatment of bc and know feel very empowered.
Brenda, Just wanted to let you know that you will love the support and care that you receive during your chemo. I worked for the hospital for 20 years and know alot of the chemo nurses at the Moll Center. They will watch you very closely the during the first chemo. Unfortunately I get my chemo on Fridays. But who is to say that I won't end up there on Wed. My monthly surprise surprised me yesterday and I may have to go and get another blood count. If I am there, I will look you up. Are you going to sign up for the Looking good feeling better class? I think it is the 2nd Tuesday of the month. If you have any questions about chemo, let me know. Sandy
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Hi Brenda:
My 2x is on Wednesday, I will be there at 8:30... on Tuesday I am getting my hair shaved, the amount of hair coming out is unbelievable. My daughter is having a hard time....she is only 15 and the hair thing is just hard for her. I am going to look for a few hats tomorrow with my friend sooo... I guess the reality of all of this is finally taking shape. But this is a great place for love and support.
I will agree with Sandy I had a awesome nurse for my first tx and she was like a rock when I had a bad reaction....she was the one who got me through, I am hoping I have her again on Wednesday. Maybe the three of us will hook up in the wonderful chemo room. Who is your onocologist? Mine is Dr. Kerwin. Talk to you soon...
Linda
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Lani, It is so true what you say about the hair. Believe me, I think that the people who truly love us have never really even cared about how we are physically. My kids and husband still love me, still treat me the same and act just as they did before. Keep that big smile on your pretty face and forget about hair for now. We will get it back. The important thing for us is that we need to be here, and we need to keep smiling through it all! You must be feeling better now that you are 10 weeks out of treatment!
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Hi Linda:
I think the hair thing is the worst for teenaged daughters. They have such a hard time at school anyways with other girls, gossip, etc. They don't want anything to be different, certainly don't want to have their mother be bald. It's good that you are so sensitive to her feelings and can wear the hats, etc. when her friends are around. I didn't have much of a problem losing my hair, didn't cry or anything but my kids are grown. I had it cut short first, then buzzed when it was falling out all over the place. I never lost it all, retained the peach fuzz. Oddly enough, two of my friends told me I looked better without hair???? Don't know what that says about my last hairdo, lol.
Peeps
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I agree, the hair thing just wasn't anywhere near as bad as I had imagined. My children are also grown and I agree it is tough when you have teenagers and young children at home, My first grandson who is six months old has not seemed to mind on webcam...........lol. We are bald together!
The anticipation aspect of evey piece of this cancer puzzle seems to me to always have been much worse than the actual event. Even with the diagnosis...............shock seems to get you throught that.
Then the education begins and we all know that knowledge is power. Most times I know what the doctors are going to say before I get to an appt. because I have researched and have found the info.
Back to the aniticipation thing. For me this has been a tough week and tomorrow I should finally get some answers when my local and Moffitt oncos finally get to consult. I am the rare one who had the bad reaction on my hands after tx #2, and did not get treatment as scheduled last Monday. Even with another week, my hands are not healed. They are better, less red, but the peeing continues, so certainly continuing as we were with treatment would probably not be a good choice for me.
The problem is I am not comfortable with the choices that seem to be hovering, even the one about stopping chemo all together with just two txs based on the fact that they did not think I absolutely needed it anyway. I hope the oncos are aligned and definitive when I get the answer and really lead me in a direction.
So, I am hoping once again that the anticipation has been worse than the actual answer I get tomorrow. It has been a long week emotionally. Physically I feel good.................even played tennis this morning and I still walk at least three miles most days. I really thought I had this treatment thing in control until the skin reaction.
One more comment about the hair loss. I truly am amazed at how much less of a trauma it was than I had expected. I am really ok with it for now...............use scarves, hats and have even worn the wig twice and no one knew. But I know the day will come in the next couple of months that I will just be tired of being bald and want my hair back. Maybe this won't take as long as I am "anticipating" either..............lol.
The support on this thread is incredible. Just reading all the comments from people who you know REALLY understand makes a big difference. I know you are all there for me as I am for you.
I will share the outcome of tomorrow with all of you when I know the answer.
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Lindy58, Sandy,Brendy---funny you are all from the same location. Good that you have each other to go thru tx. I'm jelous. I ishare a chemo room with a few men and some women who are 20 yrs my senior. My DH is joining me again this week tho. He waits on my like my personal pool boy - it is cool.
Tho the majority of my hair is out, I still wake up with hair in my mouth-yuk. Think I need a sleep cap, any recommendations?
I have grown sons. (17 and 20). When they see me almost bald, they feel bad. They hug me and treat me like Im fragile. This week I feel good, but next tx is Wed. And as most of you know, by Sat I will be on the couch. I'll need them then.
GoodFight I really am sorry about your reaction. I don't understand why the doctors think you didn't absolutly need chemo. I know some people choose chemo, but you have grade 3 with a decent size tumor. My onc says that tamox is really the best teatment choice. Maybe it will be good for you. But please let us know how you make out.
Otter,Lani - thanks so much for sharing your experience. Great to have you here, really appreciate it.
Thanks again for listening. It helps to have you guys.
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Lindy58 - my onc is Kerwin also! I understand he is getting married next weekend. I have to be there Wed at 9:45 but I have lab/port/etc and chemo starts at 11 -- what is your schedule? I will be the blonde who is white as a sheet with the deer in the headlights look and my trusty chemo bag with the sock monkey (my mom made it for me when I was little) hanging out of it........think I will be hard to spot????? Please find me!!!!
Brenny
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the good fight - I hope your doctors have some ideas you end up being happy with. I know a couple of people on this board have been given Abraxane instead of Taxotere when there has been a problem with severe allergic reaction, so you may want to ask about that. You could also ask them about FEC - it's used a lot in the UK and elsewhere with public systems instead of AC (and presumably, based on the taxotere cost, TC).
Anniegranny - on the peripheral neuropathy and nail beds, you could ask your oncologist if they have the cold gloves Sanofi Aventis makes. I wore these - they look like hockey goalie mitts and your hands get so cold you almost can't stand it, but when you think you can't take it any longer, they start to wear off and it's fine. If not you can put an ice pack on your hands, as some have suggested. My oncology nurse also recommended either dark nail polish or clear nail hardener. I did the nail hardener on fingers and toes in addition to the gloves (which were hands only) and only ever had extremely mild finger sensitivity for a day or so in a couple of the cycles.
For people who are finishing up, my oncologist recommended continuing wearing the nail hardener for a few weeks post-chemo, which I did.
I agree with all the comments on hair. The end of my last cycle was about 8 weeks ago (last infusion 11 weeks ago) and I have between 1/2 an inch and maybe close to an inch of hair, depending on the part of my head. I think it's a bit longer than Sandra's, at least on the sides, but I don't know that I could attach a hair clip to it, so maybe not! I am so anxious for it to grow long enough to go without my wig, but it's gonna be a long time yet. Watching it grow is kind of cool though. I've gone from fuzzy chick to street thug to ... not sure how to describe now. Maybe elf? It now looks like hair on a head as opposed to a scalp with some hairs, which is nice.
My eyebrows and eyelashes thinned but stayed put through all the cycles, then three weeks ago when I was back in DC to do a conference presentation almost all my eyelashes and the end 2/3 of each eyebrow fell out! EEK. I knew this could happen but it was a bit of a shocker when it did. Fortunately they have already grown back pretty fully...but I hear they could come out again. Fun, fun. I was really glad I had kept the eyebrow pencil they gave me in Look Good Feel Better - I hadn't used it until then but for about 10 days I was drawing 'em on. Luckily my wig has long fringy bangs which hides them in part anyway.
On the plus side I feel great so the little indignities don't feel so bad. Tamoxifen has been uneventful except my hot flashes have continued, but they're not too bad.
Hugs to everyone with treatments left to go!
dcgirl
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I am glad today is finally here and my two oncs will consult and advise me.
Monee, the reason there was question about my chemo is because my oncotype dx test, which supercedes size, grade, etc., put me in the category that said I would not really get a benefit from chemo that was worth the possible side effects. I had the test done twice, the first time the recurrance rate was 9%, the second time was 11%. Many bc survivors do not have as good percentages after going through chemo. Both oncs were comfortable with no chemo at that point, but then after an MRI another primary cancer was found in another quadrant of the same breast. This was very small, early stage and 90% non invasive, but just because it was there (also removed with clear margins, etc) the oncs said let's do chemo just as an insurance even though everything else in my case indicates neither cancer had left the breast. So now that I have this complication, they may decide to stop treatment. But really, I do not know what they will say. But I will later today.
dcgirl,
Abraxane has been suggested by others on this site and I intend to ask about that today. I looked up the FEC as per your suggestion and I probably do not want that for the same reasons I do not want the adriamycin................potential heart risks. It is just a personal fear, since that is our family history disease. I know it is only a small percentage that are affected, but only a small group gets this hand peeling too, and I got it!
My hope for today is that the two oncs feel strongly about the path I should take and don't just lay choices on the table for me to pick. I know that ultimately all final decisions are mine,but I am hoping they have a real sense of how we should proceed.
As always, thanks for being there..........................Caren
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