Starting Taxol--Feedback Wanted

jennjenn · October 2010

Hi! I am 38 years old about to start Taxol treatments for 12 weeks, once a week. I finished AC treatments 3 weeks ago and course was 1x week every 3 weks. The AC treatments were by far the worst thing I have experienced on this journey. I had treatment on Fridays and didn't start feeling myself until at least Wednesday following. I was nauseous and fatigued beyond words and just felt wishy washy from it. I am beng told Taxol is a piece of cake compared to AC and I may feel a bit of fatigue on treatment day but then should be OK. Any feedback from your experiences with Taxol is appreciated.

yellow78 · October 2010

Hi,

I have to say taxol so far isn't too bad. I am going on treatment 7 out of 12 this thursday and I am just starting to get neuropathy in my right foot and right hand. The only thing to watch out for is your blood counts. I got delayed one week (treatment 3) because my wbc's were way to low for treatment so now I am getting neuprogen for 2 days after treatment. My onc. wanted to see how my body was going to react to the taxol before he started this. I had neulasta after my DD AC treatments. As for being tired and sick to my stomach it is alot better than DD AC treatment. Still tired the day of and day after and my stomach just doesn't feel right for a couple days after. DD AC was alot worse for me. Taxol is doable and may be different for everyone.

Good Luck! Jenn

KorynH · October 2010

I had Taxotere, which is in the same Taxane family, so I don't know if this will help or not. I felt the fatigue and nausea as well. I also had my fingernails and toe nails loosen from the nail bed after they turned red underneath with stripes and they felt like they had been smashed in a door (and looked like it too). This lasted about 3 months and I cut the nails very very short so they wouldn't pull off by accidentally getting caught on something. (Even now, though, a full 15months later I have a bruise striperuinning thelength of my large toenails - it never has gone away) I had read about it but had never seen it or talked to anyone that had it happen. Then, my chemo buddy who I was in treatment with every single week in the chair next to me walked in one day with me and we showed each other our nails - it was happening to her too! At the same time! Too weird! There is a photo of it in a video I created on You Tube Here. Hang in there and best of luck - you can do this!!

mamaof3bugs · October 2010

I finished with 12 weekly Taxols on Aug. 11, it wasn't horrible. I lost two fingernails and three toenails. I was tired but not exhausted. I drove myself to and from my treatments (my hubby met me there, he works two blocks from my treatment center). At week 5 I declined the steroids politely and never had a problem with any swelling. I did lose all of my eyelashes and eyebrows but I'm not sure if that was from the Taxol or just a late side effect from DD A/C. You will be okay, tired but okay. Your first treatment will be the toughest, they dope you up on benedryl to make sure you don't have an allergic reaction so make sure you have someone there with you. I started radiation two weeks ago and that is a piece of cake. Good luck!! Angi

jennjenn · October 2010

Thanks for your feedback. Why did you stop the steroid?

mamaof3bugs · October 2010

I stopped the steroids because they nearly drove me crazy!! They caused me to rage and I had the appetite of a 13 year old boy. I spoke with my onc and was told that after the first treatment they were only given to avoid water retention and I would rather retain water than want to kill my hubby LOL. You have made it through the really tough stuff, the next 12 weeks will go by quickly. Will you be having radiation? Jenn, I hope that the next 12 weeks will go quickly for you. Please feel free to email me if you have any questions!

Take care, Angi

BTW we are the same age...I will be 38 in Jan. I was diagnosed a week after my 37th birthday.

JeanMarieA · October 2010

I've completed 5 of 8 Taxol treatments. It hasn't been that bad. The steriods make me feel wired and I have some insomnia. After the 4th treatment, I experienced some neuropathy in my toes, but it's manageble. I have lost most of my eyebrows and eyelashes..

jennjenn · October 2010

I do not have to have radiation. Once the chemo is over, I will be having a partial hysterectomy and the exchange surgery to get my permanent implant. I will need to also do Tamoxifin or Arimidex as well for at least 5 years.

I did hear the steroids can make you feel like your starved and also they prevent you from sleeping. I don't want either...lol. That is my biggest fear is not having enough "rebound" time between treatments and I know that is my fear because of the AC treatments.

jennjenn · October 2010

Well, had the first treatment and all in all, not too bad. The Benadryl they gave me as a pre med made me feel all goofy then like I wanted to sleep in a matter of a minute. I took an Ativan that night just in case of insomnia. I did get the constipation so Colace it is for the next one. I seriously don't know how I am going to do 11 more. Everytime I feel like I can do this I just think abut how long this seems every week. But, I must push on.

I'm hoping you ladies might have another suggestion for me....I can't stand the taste in my mouth once they flush the port, it actually gags me....any thoughts???

Thanks for all of your feedback!!!

jennjenn · November 2010

Hillck--I know first hand about freaking out!!! I love when people tell me they know how I feel, I know they are just trying to be helpful but until they walk this walk, no one will know how we feel. I actually started seeing a therapist about 2 months ago because I could not get over the "am I going to be OK" question. No matter how positive I can be I am petrified about recurrence. I know my pathology was as good as it can get for ILC and not having lymphnodes compromised was amazing but, having ILC at age 38 in itself is terrifying. My therapist told me when I'm having a negative thought to ask myself, "where's the evidence" and let me tell you, it has helped. I am going onto my 4th treatment this week and although the end seems so far away, I think about how far I have come and realize back then I couldn't picture this day. I understand it's hard to not be scared and it is only normal to want to keep feeling for a lump because the unknown is the hardest to control but, believe this is working like it has worked for many women before. I hope you find yourself wanting to feel less!! Keep smiling!!! If you'd ever like to talk,please email me!!!

stephanie1 · November 2010

Hi Jenn Jenn -

we are very close in age. I was diagnosed at 35 and am now 37. I finished Taxol August 2009 so I am a little over one year out. Here is the good news - I have to really think about how I felt for all of those months. My mom compares it to having a baby in the sense that you remember it hurt but you sort of forget the pain. Taxol was a lot easier than AC but it did have a set of new problems for me. For instance I felt less fatigue and generally felt better - less nausea and didn't need a neulasta shot. But I had issues with mouth sores - to keep it to a minimum brush your teeth several times a day and rinse with biotene from day one. I lost my eye lashes and eye brows on taxol toward the last few weeks but at the same time my hair started growing back in. I also started to notice issues with my toe and finger nails on the Taxol. I am not sure if it just took a while for the AC to catch up or if it was the Taxol. If you have the extra cash I highly recommend you go to a reputible manicurist. I went the entire time I had chemo - you just need to be careful that you use someone that you know is clean and safe. Go to the same person and make sure they know you are on chemo - they will take extra precautions for you. My lady saved mine from falling off! I asked my oncologist btw if it was ok for me to do this and he said he saw no issue as long as we were careful.

Starting Taxol--Feedback Wanted

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