Taxotere is a nightmare

Survivor, I have two more TCH treatments.  One Tuesday, and the last on the 22nd. 

Then after a few weeks I hope to start getting expanded.  My first expansion, in concert with slow healing, popped open my MX incision, so we've been trying to get it to close since October.  It is finally closing...I hope it is healed before my last treatment.

My radiologist is going to fight with me because I plan on waiting until I am fully expanded before radiation...that might be 6-8-12 weeks after my last chemo.  He won't like that....

Susan my fingers look gross but that isn't the bad part. It's when they hurt. The hurting is much less this week so hopefully I'm on the mend.

I too have the stiff muscles. I doubt it's going to take 2-3 years to go away. I'm sure it could but I'm not convinced of that. I know some have started to feel better after 2 months.

… and you bet I'm still taking the Acetyl L Carnitine. I'm not stopping till my left heel is no longer numb. At times I do think my right heel might have it a little but it's pretty minor. 

Do not think I had it worse than you. Remember I had no nausea, taste bud change was minimal, never got extreme fatigue, no headaches, no diarrhea, resolved mouth sores, no allergic reactions, kept most of my eyebrows and lashes and actually looked great the entire time.  (Granted I think I might be losing the lashes now but that's OK. They'll come back). I also have no children to take care of. No I had it pretty easy.

Granted I'm sad to find out that this nail thing might take a long time to resolve. So far no one has been able to tell me when it starts to get better. I do think my thumbs and maybe 2 other fingernails are starting to grow out though. So far I haven't lost any fingernails but I'm pretty sure 1 or 2 might not survive. 

Lago, I have to tell you I have prayed for you every day since I saw your pictures.  As bad as my nails hurt, although look normal, I know yours had to hurt like H@LL.  One of the things I have admired about you, and many of us, is that we have had our share of aches and pains but have been pretty tough warriors!  When he was telling me that the aches and pains could last 2 - 3 years, I was thinking the same thing.  Aw, BS.  However, I am glad he said it to some degree because I will continue to take the supplements and take special care of my feet and hands longer than if he hadn't said that. 

It's funny that you mentioned that you looked good through your entire treatment.  I felt the same way until about two weeks ago.  It seems that chemo has hit my physical appearance really hard all of a sudden.  I am really retaining fluid bad and am puffy.  I feel like someone stuck a straw in me and blew me up!  My eyes run all the time so my eyes are puffy and dark.  All of a sudden, I look sick.  I barely recognize myself somedays.  I hope this does not take 2 - 3 years to pass!!

Tracie, I totally agree.  Long term SE's of Taxol/Taxotere?  Isn't it bad enough being bald, I only have one boob, I have had major flu like sypmtoms for two weeks, they want to cut off my other boob and remove my uterus and ovaries.  All of that and deal with chemo aches and pains for 2 - 3 years!?!?!?!  WTH??

Susan

Hello All!

I am seeing my Onc today at 4 pm.  I will ask her about the long term side effects of Taxol/Taxotere.  My bone pain is completely gone, but my ribs on the left side hurt every now and then.  My dry mouth seems much improved too.  The only SE's left from the Taxol now is puffy face, baldness, and I still have loose bowels.  It's gross, but the stools are soft and I still have to use baby wipes to stay clean. 

Woo Hoo TonLee!  Hang in there, you are so close. 

I am thinking once I get the tamoxiphen, I am going to transfer to my Primary Care MD.  I am so tired on Oncology and I really do not want to go back to the Cancer Center anymore.  Does anyone know what happens next after chemo?  Do we just wait and see?  Do we schedule appointments for scans?  Do we have to see Oncology every six months?  

Paula, believe it or not, I just had an appt. with my onc. yesterday to ask those same questions,  I am not going to have to go through radiation so I only have 4 weeks of treatment left.  I know every oncologist is different but my onc. said that 2 weeks after chemo is over I will have a PET scan.  Then he will see me one week after that, do blood work and go over my scans.  He said for the first two years he will see me every 3 months to do blood work, a tumor marker and the ovarian cancer marker as I am BRCA2+.  I was having a lot of anxiety issues, which I am not prone to, at the thought of ending treatment and what would happen then.  Talking to the onc. yesterday helped to alleviate a lot of those fears.  Also, the onc. said that as soon as chemo ends he is going to do a blood test to determine whether I am pre- or post-menopausal.  If chemo has kicked me into permanent menopause he will put me on Femara, if I am pre-menopausal I will go on Tamoxifen.  I am 45 and have not had a period since I started chemo but was pretty regular before then. 

Susan

Lago you crack me up.  See you tonight.  7 weeks out and no hair, poo, I don't want to shed taxotears!  Well, I already do because of the clogged tear ducts but I mean the other kind!

Aaaaaah!  After only 1 Taxotere treatment the bases of my nails are darkening...  Asked the chemo nurse about ice mitts - she said they don't usually work, but recommended tea tree oil.  I don't have any idea how effective that might be but I'm going to try it and thought I'd share the info.

I've now lost about half my eyelashes (forget about mascara anyway - it would be Taxoteared off in 5 minutes) but now my eyebrows are going.  I've taken to using Rapid Lash on them (are we supposed to do that?  who knows...)  I tried to fill them in with brown eye pencil but ended up looking like Norma Desmond. 

Eeeesh - it anything else drops off, falls out or is cut off me I'm going to go berserk!!!

(Just three more to go, just three more to go, I think I can, I think I can, I think I can (Keep Repeating)

Erica-- Usually doesn't work?  That means it sometimes does and it did for me!  I iced my fingers and toes (baggies filled with ice no special mits) and chewed ice or had a smoothie.  My fingers and toes have no discoloration or pain.  I also used tea tree oil that came in a bottle with a brush like fingernail polish on my nails.  L-Glutamine powder twice a day, 3 tsps in water.  No mouth sores or neuropothy.  Just an FYI, do whatever works best for you and good luck!

Erica and Tracie, I am sitting at my desk, laughing out loud and about to pee in my pants.  The comment about anything else falling off, dropping off or being cut off sent me over the edge.  And Tracie, I so understand wanting to scream when people ask me how am I REALLY doing.  Well, duh!! 

The signature line on someone's screen name says something like, cancer took my breasts but can't take my sense of humor applies to us all!

Susan

Paula -it is nice to hear you are feeling better. How many days post chemo are you? You are not alone with your loose bowels, though; I might be having it from taking Tykerb (clinical trial drug), according to my doctor. I really think it is from Taxotere.  But we'll definitely see when my clinical trial drug dosage will be doubled next month. Let's hope loose stool/ diarrhea goes away.

Tiffany- it is great to know that at 8 weeks post chemo your hair is growing steadily. I think my hair started to grow, too. According to my husband I have stubble on my head. Yay! I am only 2 weeks post chemo. It cannot be, I thought, but I was told it is growing. I really hope so. I am so tired of the hat I have to wear all the time.

Lago - for stiffness I do a little bit of yoga that seems to help. I thought to let you know.  I was thinking about you today b/c I feel that it helps me a bit afterwards. I do restorative yoga. It is very gentle.

No I didnt' use the gel. Yes I do need to get back to my stretching exercises. I'm starting to loosen up a bit.

Oh Tracie, hon, I for one appreciate your negativity! You say everything I am thinking! I wish Houston and Dallas were closer, I think we would get along great! Hang in there girl, I'll be praying for you!

Happy birthday survivorwoman!!!

I so agree with u ladies so sick and tired ppl asking how I'm doing when I mean look at me I'm bald, achy all the time, eye brows thinning and eyelashes, my breast will be going as well...I also get well it's just two more, it's so easy for everyone to say it, I'm the one having to go through the SE!!

I don't know why all I've been doing is crying, for eveything, I hate to think I'll be like this for my bday! In the positive side I think might be getting a puppy!!! I'm excited....