Taxotere is a nightmare

Omaz

TLG - The eyes are tearing because they are dry !  It is from the taxotere.  Try using tears or other moisturizing drops.  It does get better.  Also a warm or cool compress over the eyes can help.

SpecialK

TheLady Grey - No guilties!  We all handle this differently, so it is OK.  The eye tearing things will go away - probably 6-8 weeks, but during that time it may come and go.  Try the lubricating drops as Omaz said.  Weirdly it is dry eyes that cause it. I found that television aggravated it. The muscle weakness goes away at about the same time, maybe a little sooner.  Stairs were the worst for me.  The good news is that the sense of taste comes back and gradually you start to feel more normal.  On the bright side - you don't have to wait for your hair!

Linda-n3

TheLadyGray, do not feel guilty because you are not "sailing through" chemo!!!  I for one am just about ready to cram one of those inspriational, cheerleader-type books about a woman who has BC, full time work, family, husband, does the surgery, does the chemo, and trains for a marathon while in chemo somewhere disgusting to the next person that provides me with one of those little "inspirational" books!  I am not sure, but I think MANY women get hit VERY hard by chemo.  I am one tough broad, but chemo turned me into a frail old woman about twice my age!  It has taken over a year and I am not yet back to normal, but I AM getting better, little by little.  I have to say I am certainly not the most patient person in the world, and this has gotten very old very quickly, but I also know I have made it through it, and will continue to do so.  Most people just don't "get it" about the pain, fatigue, eyes, fingers, sores, etc etc etc, but we do here.  Don't feel guilty, just come here and accept the love, encouragement, and help that we and others on here can provide.

Please call your MO with ANY SEs that you are dealing with.  They need to know about it or they can't help you.  The nurse at the MOs office was the BEST at helping me get though SEs and bringing them to the MOs attention.  Although I have had a lot of misgivings about a whole bunch of issues over the past 2 years, I have to say that my MO (and I believe MOST of them) truly care about us and want to make this as easy as possible, but they can't offer help if we don't ask them or let them know.

Gentle hugs and lots of well wishes for you.  Hang in there - but if things get worse, you can always slow down, reduce dose, delay dose - with the MO as your guide, you can get there!

TheLadyGrey

Thank you thank you thank you....



I feel enormously relieved that what I am experiencing is consistent with what others have experienced - I REFUSE to use the word "normal" about any of this.



Bought some eye drops and eye cream this afternoon so hopefully things will improve.



Being cheerful is not my strong suit. I'm losing patience with people who ask "how ARE you?" with the clear expectation that I am going to report what a non-event treatment has been and how fortunate I am and how what I am really longing for .... LONGING for... Is a hot pink KitchenAid standmixer so I can "Cook for the Cure."



I COOK, and that was actually on the display at William-Sonoma.



Let's just say that struck me at the time as financially leveraging off of my missing left breast in a way that suggested the appropriate response was to start slinging the Reidel crystal against the walls in a most non-pink way.

hopelives

Hi, I just thought I would log on because I am coming to the end of my five years on tamoxifen.  Your posts brought back memories of just how awful taxotere was.  I had T and AC.  It did cause alot of pain a few days after my first infusion, so much so that I actually went up to the emergency dept.  I was so scared. The side effects were not fun, nerve pain (felt like an electric current was running through my body), bone pain, numbness of hands and upper lip, loss of taste, watery eyes, for 3 yrs after it felt like I had run a 10 k race (sore muscles) just to name a few.   It did take quite a while after finishing chemo for all the side effects to subside, pain meds ( I like Aleve) and exercise helped.  And please don't get discouraged , I know many people who got over the side effects shortly after finishing chemo.  I guess my point is that thanks to this horrible drug I am still here on this earth 6 yrs later.  I am now happy, healthy and chemo has become a distant memory.  Hang in there, it's really amazing how quickly 6 yrs goes by ! Best wishes to you all.

SpecialK

TheLadyGrey - I forgot to add - I found Aquaphor very good to put pretty much everywhere - but particularly in the corners of my eyes when they felt raw from tearing.  Also good, and I apologize in advance for this, up your nose.  Helps keep it fron running uncontrollably, and also moisturizes it.

hopelives - thanks!

Omaz

Thanks for sharing hopelives!  Congrats on completing the 5 years of tamoxifen.

lago

At 5 weeks PFC is when I started to feel much better including the muscle stiffness. The tears gradually subsided too. Still have some nueropathy and my nails are lifted and brittle (although brittle nail issues I hear can be herceptin too. Last one in Sept.). It all takes time. My hair is almost back to it's normal texture and shine 1 year PFC.

Ladygrey the part of treatment that doesn't suck is when you start to finally feel better and realize you are still you and you are NED or stable. 

I too don't use this "new normal" term. We change everyday, even if we didn't have this disease and treatment. It's called living.

FYI ladygrey this is for you: linky

Linda-n3

Hopelives, THANK YOU for coming back and sharing. 

Lago, that link is THE BEST!!  LMAO!! (have to, otherwise might do bodily harm to some of those people who say those things!).  People still ask how I am, and I still give the same answer I have been giving: "Just fine, thanks for asking."  I don't think most of them really want to hear how I am REALLY doing - I keep that information for those who really do care and are there for me.  I am not going to give others something to gossip about, not understand, but something they can use to feel better about themselves or have something to talk about with others.

SpecialK, glad you brought up the nose thing for LadyGrey. I used saline mist for the nose liberally.  Nose ran all the time - partly due to no nasal hair, partly due to increased tear production for dry eyes - they're all connected!  For eyes, I also used a thick gel at night - DH helped put it in just before I fell asleep - Refresh PM, and used Refresh GEL drops during the day - both last longer than regular eye drops - they were a little more blurry to start with, but vision cleared up within a few minutes.   I also used Aquaphor or similar lotion on my head to relieve the sore scalp.

LadyGrey, I also loved to cook, it has been forever since I had the energy to do the planning, shopping, prep, and cleanup, so mostly eating out the main meal of the day.  The best gifts I received during chemo was packaged mac & cheese prepared by DH (hysterically funny in retrospect) and mac & cheese from neighbors.  I have started to do a little more each week or month.  Also, I had a binder that they gave me from the BC clinic to keep all my info in - it had ugly yellow cover - so I made my own, had a label NFP on the side (No f pink) and wore camouflage fatigues that my DH got for me to all chemo and other major appointments for the entire time.  Gave me a "soldier's attitude" (Mission: survive to enjoy life - mission is most important, despite casualties - such as SEs - just keep mission in focus) and gave the rest of the folks a good laugh.  Made me feel much stronger and in control.  I am also not a very cheerful person, so this suited me well.  I hope you can find some way to be kind to yourself, yet stay tough through all this.  It CAN be done!  YOU can do it - just get help when you need it!

momof3boys

Hi Linda- I like your story about the camouflage. The night before my first treatment I was talking to my sister and she asked me what I was going to wear for my treatment. I said "I don't know... What does one wear to a chemotherapy treatment?" she replied "chemoflage of course!"

lago

Linda-n3ypbI remember last year my BIL (who is a physician) asked how I was ( at the end of chemo) and of course I said fine. He chuckles and said something like  that is a very milktoast answer to my rather causual question… I replied "what, you want details" He chuckled not expecting me to say that. Most people don't want details. "Did they get it all" or "are you good now" cracks me up. I usually say "as far as I know"

Kelloggs

Well Taxotere might be a nightmare for some, but it is my best friend!  I haven't included it in my dx (denial?) but I am actually stage IV.  In the slew of initial tests they found multiple small nodules in my lungs.  The largest was 1 cm and on the borderline for biopsy. I had a PET scan and they glowed.  I had a follow up scan last week after my first 3 TCH.  Today before my #4 the MO told me the 1cm is now 4mm and most of the small ones have disappeared.  It's working!  This is the first good news I have had since being diagnosed October 18th.  I am stocked...I feel like I am kicking cancer's ass and finally have something good to cling to.  Aside from my family, I couldn't wait to come here and tell all of YOU.  Thanks for being here!

lago

Kelloggs that's awesome!!! I bet the Herceptin is really kicking butt with boosts from the chemo. So happy for you.

Kelloggs

Thanks Lago....I really needed this and it feels great!

Omaz

Kelloggs - That's great news!!!  

cdairth

Kelloggs, so happy for you. Glad taxotere is doing the job.

Eileenohio

Kelly,  So happy that taxotere is taking care of the lung nodules.   Hugs Eileen

MNGirlyGirl

Congrats Kelloggs!  Love to hear sound of you kicking cancer's ass!

Eileenohio

Lago, OMG  sorry to hear that your nails are lifting. Does this happen to everyone.  Everytime I read about different  side effects I am tempted to not do the chemo. You gals are so very brave. Wish I had your courage.  I am more scared of the side effects that I am the cancer coming back. This all sounds so horrific. I am 73 yrs old and live alone,how in god's name can I handle all this..

lago

Eileenohio my nails lifted on chemo but chemo ended over a year ago for me. They are much better now.  This is a more rare SE so don't assume you'll get this. I was working out for 70 minutes in the gym for my first 3 chemos. You'll get through this. You will not get every SE so don't let this scare you.

Eileenohio

Thanks Lago, I am so terrified. I can not wait until the first treatment is over. If I can not tolerate the chemo I am going to see if I can continue with the Herceptin and radiation,  I did purchase a wig because I understand the hair falls out after the first treatment.  You young ladies are sooo brave. God Bless all of us.                                             

Kelloggs

Eileen - You will feel much better once you get past the first one.  I just did #4 yesterday and got some wonderful news.  Not everyone gets the SE's.  You are brave too, you will see. HUGS

lago

Eileen I only wore my wig one weekend for my nieces Bat Mitzvah. The picture in the avatar is me in my wig 2 weeks after my 4th treatment at the reception. I have't changed the picture because I feel people like you need to see this. Other than the super shiny plastic wig hair I looked better than most there. I won't lie, I did have some down days but I didn't feel like crap most of the time. The real trick IMO is to keep walking every day for at least 30 minutes if you have the energy. I stopped after my 4th and that's why I think I got so stiff.

I think my hair fell out   Here's a link to my hair growth. You can see when my hair started to fall out  in the second picture from the left 15 days post first chemo. I had it cut short that day. 4 days later you can see how thin my hair got (I have a lot of thick hair). 2 days after that I had to wear a headband the part got so wide. Once it starts falling out it comes out fast. 

Eileen you will be able to do this. 73 isn't that old… my mom is 74. Your onc won't give you more than you can handle. There is a woman in my building that was diagnosed right after me. We have the same team of doctors.

She did the same chemo, herceptin and also had MX (I had BMX). She had rads and I did not. She's in her late 60's and doing great. Just had her exchange surgery (reconstruction) last month… and she is working. She did have to take a break during chemo because she was in a job that she couldn't make errors but went back as soon as she could.

That fact that you are 73 and on this site says to me you are pretty savvy and will be able to do this. (My 74 YO mom just went through two 8 hour surgeries in 4 days for her back this past spring. OMG I  have no idea how she did that. The recovery for that seem like hell and long.)

You onc won't give you more than you can handle just be sure to tell him/her every SE even if you think it's minor. I made a list. Wrote things down as they happened so I would forget. It was really helpful.

TheLadyGrey

Eileen, you do not have to lose your hair. The Penguin Cold CPS really work - I've got 95% of my hair. The caps are very effective with TC or TCH



If you are interested look at the Cold Cap thread in "Help Me Get Through Treatment". Feel free to PM me or any of the recent posters on that thread -- we are believers because we KNOW it works. Your oncologist or chemo nurses might say they don't but they absolutely do!



Kelly - I am saddened to hear about your stage but thank all that is good in the universe that the treatment is working to eradicate those wretched spots! I want you to know I read your post and picked up the phone to schedule the Herceptin treatment I cancelled this week. I have these periodic temper tantrums -- "cancer isn't going to the boss of me!" and then I return to being resigned about the whole thing -- pissed off, depressed, incredulous and resigned.

Eileenohio

WOW,Lago  Thanks for the pictures. They are very encouraging . Did your hair start to grow back before you completed chemo? I checked your profile but don't understand the dates.  

Thanks to all ladies on this board for your kind words of encouragement.  Hugs to all..

Linda-n3

Eileenohio, I sent you a PM.  Mostly want to let you know that there are lots of choices, and YOUR choices should be based on YOUR life values - what you are willing to risk and what you are content with - NOT on your MOs values or the values of anyone here.  We are here to support you in whatever decisions you make. 

Some of us had a very tough time with chemo - it has taken 2 years of my productive life from me and continues to do so - I finished chemo over a year ago and am still so fatigued that I am unable to work at half my previous pace, am not able to hike or do outdoors activities that I previously did.  I am still unable to do any fine needlework that I used to enjoy.  Losing my hair was the least of my problems.  I would trade permanent baldness for the problems I continue to have now. 

That being said, there are MANY women who get through this with minimum SEs.  My mom had chemo 18 years ago and is doing great!  She is fully functioning, goes like a wild woman, is 77 and still partying with her buddies!

By the way, some of the ladies said your MO won't give you more than you can handle, but you have to speak up.  I tend to minimize discomfort, ended up getting WAY too much - if I had told my MO or had the courage to tell her I REALLY didn't want more or full dose after the first one, I may have had fewer problems.  She cannot take care of what she is not aware of, so be sure to really talk to your MO and have a really good understanding of the plan.  And we are here to support you all the way!

lago

Eileenohio I actually didn't  look to see if my hair was growing on chemo. I had this fear it might not come back so I didn't bother. It came back in the back/sides first… that father tuck look. My last chemo was 1.18.2011. The very first picture on the right is a week before my BMX before all this stuff started. First tx was 10.5.2010.  The 2nd picutre date should read 10.16.2010 I think. The pictures read right to left. Guess I thought it was Hebrew the day I set it up.

Eileenohio

Thanks Linda,  My MO will be sorry that I am her patient because I will call her 10 times a day if necessary.  I called her today because I did not understand the directions on one of the pre chemo meds.  I am a very active 73 yr old. I walk everyday. I got a part time job 2 weeks before I was diagnosed. I worked exactly 4 days when I had to quit. I was a cashier in our local Tuesday Morning Store so I had to be able to lift some very heavy merchandise.  I am going to give chemo a try,however if I cannot handle the side effects I will stop the chemo if I am permitted to continue with the herceptin only.   Overwheming decisions for sure!!!                                                  

lago

Your MO should have a nurse to help you with questions too. Remember that if the chemo is too harsh your onc might reduce your dose. This is why it's important to write down every SE (side effect). I know I started to get a little neuropathy. My onc told me if it got worse she was reducing my dose. It never got past my left heel.

Don't assume the worst.

Kelloggs

LadyGrey -  thank you for the kind words.  This was the first shred of good news I have gotten since I was dx'd.  I am instantly a big fan of Herceptin.  My MO told me yesterday that I will continue it for the year as planned but there is a new drug finishing clinical trials that is working even better than Herceptin and will be available in pill form.  She thinks it may be approved as early as May or June and if so, I will be put on it instead of Herceptin.  Maybe you could ask your MO about this as well.  I'm sorry but in my elated haze yesterday I completely forgot the name of the drug!