Taxotere is a nightmare
Comments
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BAHAHAHAHAHAHA! I look like an emu too!!!
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Survivorwoman- I know I couldn't do it without the help of meds. I don't want to become dependent on them either and I am very careful about taking them. As you know, I have panic disorder and have suffered with anxiety and depression for years. For a long time I felt like I was crazy or just such a loser because I needed the meds. I'm a Christian and thought I should be able to pray my way out of my issues. A very good Christian friend told me that G-d gave the dr's the wisdom and the medicine to help us and that we shouldn't feel guilty or bad.
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Oh, n3ypb LOVE the pic! What a great attitude!
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I don't think anyone here is young enough to be emo:
What is emo? If only our bangs were long enough to be emo.
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lago - are you referring to emu as opposed to emo? The emu pic is on the previous page. It is funny my 21 year old DD always refers to her boyfriend as emo and she has to be the man in the relationship. The killer is that he is a Navy Seal, albeit an emo one apparently!
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This chemo drug really mess me up....blood count was awful, even with Neulasta and after #6 treatment I needed a transfusion. I am still light headed when I get up from bed and now doing rads I get dizzy when I get up from the table. Some have said it is from the chemo but the oncologist doesn't think so...I finished my chemo the end of Dec. and this week my blood work was normal. Bp is still on the low side. Hoping in the next month or two I actually begin to feel better. Is anyone else dizzy or light headed from their chemo?
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kallimom, interestingly I was noticing dizziness in the past week, but it happens when I get a hot flash - feels like I am going to pass out. Hadn't considered it might be chemo related because I also finished near end of December. Have had lots of "little things" that just aren't right, but am getting tired of attributing everything to chemo, yet have some gut instinct that my body is still reacting to it.... anyone else having similar problems?
At least the fingernails are improving!!
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Omaz,
I write fiction, so love fantasy/sci-fi type flavor. This is called the Tree of Destiny. I love her.
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That's Beautiful!!
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Kallimom - i have been experiencing some dizziness. Not sure which drug to attribute it to. I really had a hard time on taxotere - worse then AC! I have pain in my fingertips that may be permanent. If it's going to end, should it have ended by now? I am on arimidex and occassionally take oxycodone as I still have post mastectomy pain.
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Glad to hear I am not the only one experiencing some dizziness. Still hoping it goes away. My oncologist said 3-6 months for the side effects of chemo to wear off....and I am about at the 3 mo. mark....so maybe another few weeks. Finger nails are awful...the one that came off looks like I bite my nail in half....and I used to have really nice nails...oh well, they will grow.
Love the picture of the tree....it is great.
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Hello to everyone out there ! New on the block....
Finished TAC almost one year ago and still look like a mad scientist
- anyone else still wearing the pesty wig after one year ?
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MGB,
Welcome, hope you are doing well other than the hair? I have just finished my 4th round of TAC, hearing you are still in a wig is discouraging. How much hair do you have? Maybe a new cut, color or style would help? Are you taking anyother meds that could be adversely affecting the hari growth.
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I am sorry to hear you are stil in a wig. I have 9 more weeks of taxotere treatmeants and was hoping I could start looking for new hair after that,
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Hey gurls,
Certainly did not mean to scare u - everyone responds to treatment differently. It's just that I was not warned about Taxotere possibly causing permanent alopecia. Just found out about it and am truly terrified. Am having a regrowth that looks like baby fine hair, very scarce and bald in certain spots. Just joined a band of sisters with same problem and was wondering whether there were many more in this forum. Asked my onco whether Tamox could be the culprit and as usual could not get a straight answer. Will be asking my endo to test my thyroid as radio may have shot it.
Don't know to tell you the truth, struggling to find answers and certainly want my mane and my life back !!!!!
Best of luck with your treatment and keep strong
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I never had a mane. I kept my hair cut short and it was so thick and curley. I guess if I had ever been able to stand the growing out process I would have had a mane.
MGB will we ever have our life back? I sure hope there is something that resembles a life.
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MGB, everything about this BC crap scares me these days. I hope you get some answers from your endo. You may also get some answers from the girls on these forums, they are so helpful. My hair has always been short and fine, but alot of it. The hair loss has been my worst SE, at least emotionally. Sure this sounds familiar to you too.
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MGB I was on TC, but have to say I was about convinced my hair was never going to come in. I only had 1 treatment back in Sept. my hair has finally begun to grow, but only about an inch long. I don't even want to think about where I would be if I had had the 4 treatments I was ment to get.
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MGB~
My heart goes out to you. I was on TCH and I used the Cold Caps because I had heard of possible permanent hair loss. There is a website of nice ladies that I have corresponded with called www.taxotears that you may want to look at.
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MGB I'm sorry this has happened to you. I really hope something changes for you.
I have read the risk of your hair not coming back on taxotere is 3%-6%. They really don't know but even my dermatologist knew about this SE. Yes rare. I figured there was a chance because I already had some insight receding hairline. I too was not told about this before I started chemo.
I considered I might have to deal with this. I figured I would rather be alive and came to terms with it. I can never truly understand though because my hair is growing back just fine (almost 10 weeks from last chemo). I even think the receding hairline is gone now too.
We can't look back but I do feel that the doctors need to be more honest. In my chemo binder it mentioned briefly something about nail beds hurting, fingernails lifting and possibly falling off… but a rare SE. I did get it but at least they were honest. In the hair part it specifically states "your hair will grow back." That's just not fair to not warn people.
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I so agree with you lago!
It is the fact that women are not told. That is what bothers me. I looked back at my paperwork and it also states "your hair will grow back."
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I had an onc that told me taxotere was a piece of cake.... Never told me any of the side effects that I would get and that I got ....NOTHING !!!! I think oncologists need to take a class on being sensitive and they need to talk to us more this is serious stuff they are giving us!!! And when you do call them or go in and tell them what is happening they say yes that is one of the side effects NO REALLY !!!!
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My NP took me through chemo training with the binder of information including SE and what do if you get them. It just wasn't 100% accurate regarding the specific rare Taxotere hair issue. This binder was great but I know several people who got the same binder and never read it. I referred to it often.
I really can't complain about my onc at all. She is great. I remember when my fingers nail beds started to hurt she warned me that is was a sign they would/could fall off. When I mentioned my sore tongue she had me suck on ice. When I first reported neuropathy she said if it got worse she would lower my dose etc.. I felt very lucky with my entire team since I don't usually like doctors. Maybe that's why I never got ill in the past
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All the info I recieved is supplied by the pharmacutical companies that make the meds. I get my taxotere along with adrimycin and cytoxan. All of these meds have such nice SEs. My onc also has been great, very sympathetic about all my complaints, and keeps telling me "one day at a time". I also had never been sick in the past, my biggest medical issue previously was infertility. Interesting one of the drugs I took for this is linked in some studies (although denied by manufacturer) to BC. Would I trade my boys not to have BC, no way! My worst side effect from chemo emotionally has been the hair loss, the thought that it could be permanent is so scarey. I still have some hair hanging on my head after 4 treatments, and have shaved some stuble from my legs several times, I am praying this means my hair will grow back. I will know in a few months.
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When my haor started falling out I shaved it to 1/8 inch and totally shaved a bit right in the front because my lace front wig showed the hair... and when I used the wig the first time, the salon suggested using double sided tape and that removed some hair at the temple... BUT the hair that was 1/8 inch is definitely longer now after 3 treatments... and I can feel stubble in the front and temple area... plus I had to shave my legs this week, not my underarms/bikini tho... SO being optimitic, I am hopeful that my head hair will grow just fine and and I will never see another pit/bikini hair every again... here's hoping. I am blond though so it really doesn't show up much... AND I never lost my arm hair or thigh hair (although my thighs did thin). I don't usually shave my thighs and I still have facial hair (brows, lashes and mustache)... It is so weird how the chemo chooses which hair to disappear.
Also, I have heard that Tamox can make hair regrowth slow... so there still may be hope for those with longterm hair issues.
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Xeloda thinned out my hair. Abraxane took it out. It was growing back nicely and now I find that Tamoxifen may interfere with regrowth. Hate my wigs. Looks like it is back to the wig store. Wasn't expecting this as TAC didn't cause this side effect. After that chemo my hair came back in thick and very curly and I didn't have any thinning on Arimidex but it didn't work. Crapity crap.
PS What really ticks me off is that the onc never mentions these side effects. It has been six months and I still have neuropathy.
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bdavis sorry to tell you but the "other hair" that you don't want does come back too… all of it. I swear I'm getting eyebrow hairs that I haven't seen in 10 years come back. It's like puberty all over again between the boob fills, pit/leg and pubic hairs growing . Thank goodness no zits or mood swings.
imbell I still have neuropathy in my left heel (numb) and my finger nail beds are still sore. More nails have lifted on my toes (all of my fingernails have already lifted). From what I have read this stuff can take time to go away. In some cases as long as 1-2 years in other cases 3-6 months. Neuropathy seems to be the one that takes the longest to go away. I know of someone on this list that got it in her fingers months after chemo. Don't lose hope. You might just need more time. It's been 10 weeks now for me.
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Greetings Ladies !
Thank you so much for your precious support, it's grand to be sharing with you.
Unfortunately, I think the medical community here in Canada is lagging behind and their approach seems different (no binder of info for me...). Maybe my onco figured if I tell her of the risk of permanent hair loss, she might not proceed with the treatment - DA !!! Doctors here have a very paternalistic attitude, you have to be a good girl and not ask too many questions. I did not choose my onco who by the way does not get rave reviews on the net. I wish I had been "assigned" to a female onco, she might have been more sympathetic about the hair issue and might have told me AT THE LEAST about the cold caps...never heard of those before !!!!
Like you say, it's the after-the-fact surprise, the lack of honesty that hurts. You're standing in front of the mirror day after day expecting to see yellow frizzy hair grow back, don't much care about the eyelashes or eyebrows or any other growth for that matter.....As well, I am ready to blame Tamoxifen for this. All of these drugs are so so very potent.
All considered, I would do it all over again because IT WORKED. Just had a whole-body PET scan and NO CANCER !! I was soooooooo relieved.
Christine and Mimidi, I urge you to trust that everything will turn out OK.
Of course I want my mane back, but hey, if the price to pay was baby fine hair (I have not given up hope yet !!! ) so be it. I'll try anything, i.e. biotin, amino acids, loads of protein, silicea on my scalp and I'll be drinking loads of it. Anything else you might have heard about ladies ?
QUE SERA SERA - have a wonderful day !
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MGB I'm so glad your scans were NED! That's awesome.
I am doing biotin and women's rogaine once a day. I buy the walgreen's minoxodil (generic Rogaine) on sale all the time. It's like a 3 month supply for 1/2 price. And since I only use it once a day (if I use it more than that I grow hair on my face) it lasts 6 months.
I don't know if they ship to Canada or what it would cost to ship there. I would think some store would have the generic in Canada
Edited to say it can take 3-6 months to work
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MGB, That is great news !!!! I am so happy for you. I hope you have a great week !!!
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