Taxotere is a nightmare

Linda-n3

Lago, you may be right on the potential cure rate, but the statistics also show that for a population, the 10-year survival is improved by 0.3% and the 10-year disease free survival is improved by about 5% for the age and stage that Eileenohio is.  Problem with all these numbers, as I have often said, is that they are all based on POPULATIONS and have nothing to do with individual response.  Despite the chemo, I got recurrence in 6 months, but according to statistics, that should not have happened. 

I don't really blame my onc completely - I have (had) a tendency to minimize - when she asked if I was having "trouble doing buttons" I said no (I wore turtlenecks and zip-up cardigans, didn't have a lot of buttons that actually "needed doing"), but I didn't tell her I was unable to fasten my necklace, couldn't play piano or type without pain - but she didn't ask.  I DID tell her I was having numbness in  my fingers, but mostly I just felt like I had to "grin & bear it" and it was my DH that called the MO one day to let her know that I was pretty much nonfuctional and in tears all day because of the pain.  Since this, I have learned to exaggerate symptoms on the other side to get any attention.  So now I feel like a complainer and I never was before.

Anonymous

About dragon boating - our team is just for breast cancer survivors! There is probably a team in your area, give it a try on google. It's great for exercise and keeping lymphedema at a minimum - really uses those arm muscles!!

I did not mean to make you disappointed about the time it takes to feel better after chemo. I had some other health issues going on which possibly contributed. I have heard, tho, that it CAN take a few years more or less to feel 'like normal' whatever that is   Just give yourself time to feel better after chemo is done and don't push it. Lots of rest!

Blessings,

tucker

lago

Linda-n3ypb I too minimized my SE at  the beginning. When my big toe nail started to get all white underneath finally I mentioned it to my onc at my 2nd chemo. Next thing I know I'm being sent to a podiatrist… and in the coming months (especially after chemo my nails lifted, oozed etc. Who knew but after that one time I wrote down everything and came in with a list.

When I first mentioned neuropathy issue (minor) my onc told me if it got worse she would be reducing my dose. Never did get  past my feet, mostly my left heel.

I find the real problem with these stats is I'm not confident how they figure in the HER2+ factor… and they don't figure in the treatment of Herceptin for early stage because it has only been standard care since 2006. No 10 years stats. In Eileenohio's case I think she has the perfect plan for her age and lower stage/no nodes. If the chemo is too much then just do the Herceptin.

Eileenohio

Lago, I too am skepitcal of a 100% cure. Both my BS & MO have said that my BC is curable.It bothers me that all my research does not support HER2 positive being curable,but that is what they both told me,actually they told me this many times because I keep asking them if this is really curable. Both the BS & MO have told my sisters this also..  Today I have a touch of diarrhea,don't know if it is stress or side effect from some of the meds..Hope it passes by tomorrow. 

Omaz

Good luck tomorrow Eileen, remember the ativan in the pre-meds if you think it would help.  I also iced by fingers and toes during treatment.  Most women don't have trouble with their nails and if they do it isn't too bad but I iced them anyway.  Lago had a rough go of it with her nails. The icing is supposed to decrease the blood flow to the nail bed during the taxotere part of the infusion so if you choose to do it you cool down for 15 minutes, start the infusion, then15 minutes afterwards.

lago

Eileenohio it is possible that you can be cured even with HER2+. The problem I have is they say for sure. They don't know for sure. I remember asking my MO "how do we know if this will work?" She said "we don't. We know 40% of the people (with my stats based on my pathology) don't even need additional treatment after surgery but we just don't know who they are."

So I guess what I'm saying is there is a very good chance you will be cured it's just not 100%… unless your MO & BS have some crystal ball.

Linda-n3

Lago, you have such a positive attitude, and always have had, even when your nails were giving you such problems.  I truly admire you!

Tucker, I was just getting back into the best shape of my life after losing 3 years to chronic shoulder pain and surgery for rotator cuff injuries (BOTH arms!), so I think that this setback from BC has been especially hard on me both physically and emotionally.  I find that fatigue really magnifies all the other symptoms, and I just didn't expect the fatigue to be as bad or long-lasting.  So learning to pace myself is a real pain in the a** and some days I do this better than others.  I know in my brain that this is key to recovery - get enough rest, that helps pain, better pain control gives better energy - etc. and that leads to improvement all the way around - but it's hard to keep on slowing down when what I really want to do is to speed up with my work obligations to get to the fun stuff in my life.  This week it has felt like I just work work work and have no time for fun, and I know I have GOT to stop this type of nonsense and realize that I do actually like my work, too!

Eileenohio, I have special prayers for courage and healing for you.  I know that during my most down days, I could come here and get some helpful hints or words of kindess from others.  And I also hope that I have helped a few others with some hints for comfort measures that I have picked up along the way.  We are here for you and will support you with our love across cyberspace!

Omaz is right about the ativan (or other benzodiazepine of choice)!!! Also be sure to put together a "chemo bag" with entertainment for a few hours.  And I found that it was an all-day affair, despite being told each time it was only 3 hours - first had to wait for labs, then order had to be sent to pharmacy, pharmacy invariably was behind or sent wrong stuff initially, etc. etc. and the first chemo was supposed to be done by 4 pm and I was there until 7 pm. Succeeding sessions weren't any better, so I just went prepared with personal entertainment (games, books, DVD, etc.).

Kelloggs

Good luck Eileen....I have faith that you will do fine!

Eileenohio

Kelly,  thank you so much. I have been trying to prepare all day.  I cut my nails and put 2 coats of clear polish on. I went to the Health Food Store and bought Whey Protein Powder to add to food and drinks.  Ironically at the Health Food Store the sales lady said "your hair is so pretty" I didn't know if I should laugh or cry..My sisters  are going with me tomorrow and my one sister is going to stay with me tomorrow night.  I guess it's a go !!!!   

Eileenohio

Linda,  Thanks for your special prayers. I believe in the power of prayer. Gee I hope I do not have to be there all day. I am scheduled for 10am.  Tomorrow night at this time treatment #1 will be over..                           

OneToughCookie

Hi Eileen -

It sounds like you are very prepared. Good luck tomorrow - you've got a lot of support. Please remember to take things one step at a time.

SpecialK

eileen - good luck to you - will be thinking of you tomorrow.  I hope everything goes smoothly, but please know that we all are here for you, anytime you need us.  We all know what you are feeling, and how scared you are, but you can do this.  If it is too much, it sounds like your docs are prepared to change your therapies so that you can handle things.  It is funny that you mentioned your hair - when I would be out and about in my wig I had a lot of positive comments, and I always wondered it I should elaborate on the fact that I was wearing a wig, or just say thanks and go on my way!

lago

Eileen may you have your first infusion go exactly like mine. I had no issues. They actually kept speeding up the infusions because I wasn't having any problems. I too will be thinking of you tomorrow. I'm sure you will be exhausted when it's all through.

rachelvk

Eileen - Good luck! You've gotten a lot of great advice here. I also have had a relatively 'easy' go at it so far, though 'easy' in chemo speak is relative. Keep your spirits up, and just keep following the advice about meds, drinking and exercise.

SpecialK - On the hair: I just got a new wig (really short and really red), and so many people have commented about it. I did tell two new people about my chemo because of their compliments. I'm a pretty transparent person, and I just felt weird trying to come up with answers to questions like "So when did you do that? I think I last saw you...." 

lago

rachelvk when my hair grew back and people would tell me how great my new short hair looked I would say, Yes the most expensive hair cut I ever got. The ones who know what I was talking about chuckled.

rachelvk

lago - 

I just saw your signature - Congratulations on getting through everything! 

lago

Thanks. Now just 4 years and 2 more weeks of this estrogen sucking drug and I'll really be done with treatment

SpecialK

Yeah, the answer to "who does your hair?" is Taxotere and Carboplatin, to those in the know.

lago

SpecialK if someone asked me back then I would give them my oncs name but no one ever did.

Lumpynme

how does one know if taxotere will be in their future???????????????

Moonflwr912

When the future hits you on the head and you get the info at the MOs office LOL. Until then, take it a day at a time. Much love

Omaz

Hah - I have a funny story, when I went to my onc for my chemo class my daughter went too (though she didn't come into the class).  On the way home she was looking at my paperwork.  They gave me a printout of each of the treatments and some information about it.  There was taxotere, carboplatin and hamster.  My daughter said 'mom, are they treating you with hamsters?'!  Hah, apparently the computer had auto corrected herceptin to hamster.  We laughted about that one.

SpecialK

omaz - so did you receive 17 or 18 hamsters?  I only had 17, lol!  I was eating while I was reading this and it was a good thing I had just swallowed because I was really laughing!

Omaz

SpecialK - I got 18 hampsters!  hehehe

VeronicaX

I am tired a bit today

Kelloggs

I feel you Veronica, I'm tired a bit everyday

BelaT

Me three, I am so tired too:(

Linda-n3

Eileen, thinking of you tonight, hoping things went smoothly today.

Sending best wishes to all you who are tired tonight - may you get the rest you need.

And sending gratitude to all of you for being here.  I think I have been a little down recently, at times it seems like I will never NOT be tired, but then I have a relatively good day and my positive spirit comes back.  Today I had less pain, did a lot of good work with my students, and I feel valued.  Feeling valued is one of the best antidotes to those negative thoughts. And so I am also grateful to my students.

Prayers for peace and healling for all of you tonight.

Mom2JJ

All who are having trouble eating, do try whey protein. We are adding it to my daily cup of hot chocolate (yes -- a longstanding vice of mine instead of coffee) to try to help with overall health during TC. (My second is next Thursday.) I'm icing fingers and toes and freezing my head with cold caps, so my treatments are very cold affairs. I wasn't given Emend although I threw up as soon as the steroids began infusing, so I will ask about that. I am taking Ativan before, during, and immediately after (pretty much the same time as the steroids) to combat the nausea. My nausea passed after about day 4. I'm also doing my best to exercise; studies say that women who exercise do better during chemo. The trick is that balance between too much and not enough -- and I'm pretty sure I don't know where the tipping point is. My MO won't let me take any vitamins other than Vitamin D and calcium, and to be honest, I'm not taking those right now because my stomach is rebelling against all of the nonfood items heading its way (Miralax, Colace, Xanax, Effexor, steroids, Ativan . . . .) Before chemo, when asked if I took any medications, I said none. Boy, how things have changed!

lago

Mom2JJ I too didn't take any meds prior to treatment. Now 1 year PFC the only med I take is the estrogen sucking drug (Anastrozole). Everything else is suppliments like D3, calcium etc.

Please ask for drugs for the nausea. You shouldn't need to suffer 4 days. If the ones they don't give you don't work ask for others. There are plenty of others but tend to cost more so some are reluctant to prescribe. Sometimes you need to push to get what you need