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Stage 2 Invasive lobular carcinoma - Chemo- Taxol

Ames1623 profile image
10 Replies

Hello! I just found this site and decided to join. I am 41 and I found out I had breast cancer in Dec and started chemo last week. Today I had my 2nd dose of taxol. I have 10 more weekly doses to go followed by 8 weeks of AC (red devil). Then I will have a double mastectomy and then radiation.

I am curious about the side effects of the taxol. I have read all the pamphlets and all but want to hear true stories. Can you please share your experiences with me ? I am curious about my hair..although I must admit I went ahead and shaved it a few days ago and have been wearing my wig. I couldn't stand the thought of pulling my long hair out at work or in public. Anyways I am excited to find this site & am glad I am not alone in this crazy scary journey!

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Ames1623
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missa13 profile image
missa13

Hi, Ames1623 ! So glad you found us. I'm tagging a user who mentioned she was on Taxol to see if she can shed some light on her experience with it: dennio . Please continue to reach out if you need any support!

Ames1623 profile image
Ames1623 in reply to missa13

Thank you!!! I am glad I found you all as well :)

mrsschwartz profile image
mrsschwartzSHARE Volunteer

Hi Ames: as with all chemo, different people experience different side effects, but you made a wise decision in shaving your head. Everyone loses their hair on the protocol you've chosen. Fatigue and exhaustion are the most common complaints from people in chemo ---and that's cumulative. So, you might notice this more and more as you get toward the finish line. Many people tolerate taxol well, and let's hope this goes for you! Some experience bone and muscle pain, others notice tingling sensations in their fingers and toes. (Neuropathy). And, a few people experience a peculiar destruction of their nails as they can peel or turn odd colors! Most importantly, as you experience any troubling side effects, mention them to your doctors --there are things you can do to combat some of the discomfort . And, watch out for fevers or infection and be sure to report them to your medical team when in treatment. Good luck as you proceed through treatment. And post again if we can help or offer support!

Ames1623 profile image
Ames1623 in reply to mrsschwartz

Thank you so much!

RLN-overcomer profile image
RLN-overcomer

Sister/Warrior keep the faith.I had 6 months of aggressive chemo, all the same drugs you had and it was difficult,but the heavenly light at the end of the tunnel was like reaching paradise on earth. I always appreciated life ,and sometimes took some things for granted. Now I appreciate everything life offers me , even more.I keep positive people around me and those who are not positive or grateful I keep at a distance away from me.Yes I am, and you will Live , Love and Laugh even more after your chemo treatments are finished.Gods speed in your recovery Amen.

Ames1623 profile image
Ames1623 in reply to RLN-overcomer

Thank you!! I definitely agree that you have to remain positive & surround yourself with positive people to get through! I am doing good so far after week 2 of chemo...just a bit tired.

Cancerpatient profile image
Cancerpatient in reply to Ames1623

I have no support,and no-one positive around me,chemo is over and I'm alone and miserable

missa13 profile image
missa13

Also Ames1623 , you might be interested in this-- we recently had a webinar on Invasive Lobular Carcinoma that was recorded and is now on our site: sharecancersupport.org/vdob.... No pressure to view, but it got good reviews and you might find it insightful!

Jhordynn profile image
Jhordynn

The "red devil" for me wasn't as tough as the Taxol, after 1st treatment I got the neuropathy (tingling, numbness) in my fingers and toes (mine was more like pain) my knees also ached, I consistently took ibuprofen and acetaminophen every six hours and that helped tremendously. I also took daily Epsom salt baths. I broke out in a rash and added oatmeal to the Epsom salt bath, as well as 1% hydrocortisone on the rash. My right ring finger had the most neuropathy feeling and that is the nail that has lifted away from my finger. I have 3/4 of the nail still attached (after 2nd treatment). The fatigue with Taxol has been way worse, with both treatments so far I have been stuck in bed with achy body "flu-like" symptoms for 2 days. I was told to let them know before my next treatment (which is Tuesday) that about being stuck in bed and they can give me more steroids to counteract the side effects. Keep in mind, I believe everyone is different, but I initially thought maybe the Taxol wasn't going to be as bad as the A/C because of all the "red devil" talk. I would have liked for someone to stress to me that this could happen because it kind of through me for a loop. I'm not trying to scare you but at least now you know these are the possibilities and it won't pull the rug out from under you, like it did me 😏 I never got a rash the 2nd time so that was a relief.

I keep reading articles that say to remind yourself that with everything happening to you that means the chemo is working, not sure if it will help you or not, but it has helped me.

Sending love

Terissa

birdibelle profile image
birdibelle

Hi. Stage 4 , dx 3 yes ago. I had both chemo. Taxo tx was way better . We called Adriamycin , the red devil. Humor helps me. Birdi

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