Taxotere is a nightmare

I had swelling as well and was absolutely convinced it was the Herceptin.  The swelling stopped about 4-5 wks PFC.  The bottoms of my feet also get really sore - some nights when I climb into bed, it feels like I've walked miles and miles.  Ankles get very sore too....

I traded in my Walmart flipflops and invested in a pair of "FitFlops" sandals - VERY comfy and have good support.  I had bought a pair of "FitFlop" clogs last fall and they were fantastic over the winter.  For any distance walking or mild runs, I always wear my runners - they are New Balance.

I try to wear comfy, supportive flip flops as much as I can (even at work when I can get away with it).  Swelling is definitely worse for me depending on humidity, heat, and SALT!  I had some popcorn at a movie and the cankles started swelling up like balloons...Lesson learned.  I haven't had any alcolhol to try and prevent it, and am cutting back on my caffeine gradually.  During early post-chemo I had to have my caffeine in the morning to get myself going.   I will get back to decaf within the week though.  I'm at 5 weeks PFC tomorrow.  Crossing my fingers that no new SE's pop up...

Hi Ladies- I am really relating to your posts.Especially yours, Linda!

It's been a very long journey and yesterday I finally finished with everything- it was my last Rads treatment! I got to sit with the my RO and I had a meltdown. I cried and said I wanted to feel like I am 49 and not 89.I have been thrown into chemopause, and I have a white hair growing in, (I have colored my hair all these years because in our family the gray starts in early)  The one breast that didn't have cancer seems to really have gone farrrrrr south and I am so sore. I have been confused what the real issue is, because the last few weeks I felt like no one was really listening when I asked about pain and weakness.  Well, the good thing was, yesterday they were all ears. She asked me if I had Taxol or taxotere... and she responded that Taxanes are definitely not nice to the body. I guess I am just trying to say I felt validated. I had been hearing from the Chemo nurses and the Rad techs that I was too far out from Chemo for certain side effects, and that the side effects I was mentioning were not related to radiation.

I finished Taxotere in April, and I watch as my nails are slowly growing out in a healthy pink. They are a little less than halfway. I think i will be losing the nails on my big toes, they are still hanging in there though. My hair started falling out after I finished the Taxotere, like many of you here, I had bald spots... and the sides are growing faster than the top just like many have mentioned. I loose my balance easily, and sometimes I walk so slow my daughter has commented- Mom, I am walking slow and you are walking really slow!

Rads this last week for me has not been easy- some of the little blisters under my breast in the crease have opened and by my underarm and it is incredibly painful. I was one of the ones that got to lay like superman while I was given radiation treatments, and then had boosts done on my back. I struggle to life my arms over my head. Is this bacause my arms would fall asleep while holding my arms in the superman position? I have been given a powder to mix with water, and dip cloth in to make 'soaks' for the raw area under my breast. I have had fatigue, but I feel like the stiffness, soreness, weakness has also lent to my tiredness!

I have learned so much. I am grateful for my life, family and friends. I have been blessed to feel so much love.

I would have been lost without these boards and all the wonderful women here!

carylc - there are a bunch of us dealing with the sudden fluid gain.  My onc gave me a diuretic the day of #5 because I was visibly swollen, and my node arm was larger than the other.  Almpost immediately I lost 10 lbs., but then 5 came back the next week.  I had a 30 day supply but no refills which took me to a week past #6.  When I had not taken it for 3 days I gained 5 more lbs and was so puffy looking they made me sit and took my blood pressure!  They put me back on it, now that 5 lbs. has gone, but I still have some fluid retention.  I know that some of  my total weight gain (10 lbs.) is actual weight probably from less activity, but some is definitely fluid.  My onc said it is a catch-22, steroids are for swelling but they cause swelling...  You can do this, and you will!  It will all be ok eventually - that is what I keep telling myself!

Thanks for the encouragement.  It seems like each round brings a new challenge!  I am definitely becoming a stronger person throughout all of this.  It so helps to have others to share with!!!

Just thought some of you might be interested in a study done to look at a topical preparation for CIPN:

http://www.ncbi.nlm.nih.gov/pubmed/20496177

Dr. Deb Barton has done a LOT of research on quality of life issues for breast (and other) cancer survivors.

Sylvia, that's great to know at least someone REALLY did come through this without major issues - most of us here seem to have had some problems and needed to talk about them, and I, for one, forget that many women do NOT have these SEs.  Thanks for reminding us, and for the encouragement for other women contemplating these drugs.

Omaz, not sure if the topical cream is helping the hands a bit.  Feet still have mild issues, teeth bother me a lot. Seems to get worse when I am tired or stressed, and unfortunately, when I have a glass of red wine.  Sometimes I just throw cares to the wind and have the wine anyway! I DO think the cream has helped resolve the abnormal sensations, but I am still hypersensitive and tinlgling, yet feels numb until I touch something. Very odd.  Anyway, I am less distressed and coping better.  Thanks for asking.  Glad to hear you are getting better also!  We will hang in there!

Crimson I too had that issue. By the time I got to my 3rd tx I couldn't zip up my boots. I was always bloated. All I can say is once chemo ends it really does all get better. Really.

I just had my first Taxol treatment on Mon.  On Tuesday I had sore toes and fingers but today Wed, I was hit with the pains running up and down my legs and into my bottom, vagina and abdomen.  I got some hydrocodone but it isn't very effective.  I hope this doesn't last too long. 

Here is my 8 week post taxotere ( PFC) update. I still have neuropsthy in both feet..soles. My leg weakness is very slowly improved but still not back to normal. My eyebrows thinned but are still there but I now have only one eyelash. Hair is barely visible but I can feel some peach fuzz on my head. My nails are hanging in there but the 3 ridges on eacn nail are now feeling like very fine raised layers that could be picked off..(hard to describe this) and are slightly discoloured. My taste buds have not improved a lot..meat and starches just don't taste right and my mouth is always dry. I have more nergy the past few weeks..finally..but have had 22 radiation treatments so far so we'll see how long that lasts.The areas on the back of both hands and one arm where I had the taxotere rash are stil l"stained" pale pink. It's been a very slow process.

Emily - My neuropathy is slowly getting better.  I am 8 months out from last treatment.

I have had my first taxotere last week and have been fairly okay so far. After 3x FEC it is a breeze. I am taking LAcetyl Carnitine to prevent neuropathy and so far I have had no tingles or numbness anywhere in feet or hands.

If you have developed neuropathy on taxotere, when did you first feel symptoms???

I am hoping the LAC will prevent problems but am vigilant with 2 treatments still to come. The FEC SEs were quite cumulative- have others felt this with taxotere as well ? The fatigue has been the major SE so far.

Thank you for advice! Robyn

Robyn_S I think it was very slight afer the 1st treatment in my left heel. After 2nd treatment I also got some pins & needles in both hands. At that point I started the Acetyl L Carintine. Never got it in my hands again. It came and went in my left heel but after the 5th tx it never went away. It's slowly getting better.

FrancesC - yes.  I am in the middle of cycle 3 of 4 TC, and have had problems with diahrrea on all three cycles.  I started using a 12 strain probiotic in the middle of cycle 2, and although I still have diahrrea this cycle, it is not nearly as bad as in the previous cycles.