Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.
Take our poll: Caregivers, what do you find most difficult about caregiving?
Weigh in: What are the best and worst gifts for people with breast cancer?

Weekly Taxol group

1…101102104106107…426

Comments

  • Jules_NY
    Jules_NY Member Posts: 74
    edited July 2014

    Hi MD,

    You def came to the right place. I am also in medicine I'm a neonatal PA turned patient. And what a whirl wind it has been!!!  I find my brain teetering between calculating out risk/benefits (my medical brain) and just going with my gut (my patient brain). I am also getting neo adjuvant chemo because of the type I have. I am getting Taxol #10/12 today and I have been working since my diagnosis. It is tough but totally doable! I also have a 5 and 7 year old. You are a true inspiration to those little beans of yours, I hope you know that!!!

    AC was definitely more difficult for me to tolerate. I had about 2 days of utterly oppressive exhaustion. On taxol For me it's getting harder as the weeks go by but still tolerable. It actually got better in the middle if taxol and for a few treatments I felt completely fine in between. The post chemo days were a bit less predictable for me on Taxol but I also had a few other bumps in the road and was likely not feeling well because of that. My SE are mostly fatigue, aches and pains, a but of neuropathy in my feet. Other than the neuropathy I equate it to when I was pregnant and working. And I even took night call then. 

    Nothing but the best of luck to you! Keep us posted. Ask and vent all you want. We are here for you!!!!!

    Julie

  • MomMom
    MomMom Member Posts: 334
    edited July 2014


    Looks like I spoke too soon when it comes to no issues with Taxol:-).  My gran wbc # was too low for chemo today (0.9).  Ugh!  I could have had chemo if I'd agreed to self injecting for the next 4 days with Neupogen, but she said that I'd have to get the script from a specialty pharm and that might be difficult with the holiday weekend, so I passed on that.  She also said though that since I've already had 9 Taxols, the MO was fine with me skipping #12 - just have #10 next week and #11 the following week.  The MO is very conservative, so I feel confident (fairly:-), that I'm OK with it.  But would appreciate feedback from others.  Nurse also said that if I were earlier in the cycle (eg, #4), I would still have to do the full 12.  She made the comment that the fact it's lowered my count means that the dose is obviously heavy enough for me. 

  • clarrn
    clarrn Member Posts: 160
    edited July 2014

    MD- I am sure you are a very diligent physician, and I hope it didn't look like I was saying otherwise.   I too, followed the self exam controversy and have the same opinion.  This disease has been a huge eye opener in so many ways for me and we will all be much better informed for it!  Good luck with Taxol #1 and you are super woman working through this!

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Welcome MD! It seems that most people who struggled with AC do better with Taxol. I did Epirubicin and Cytoxan first, then Taxol. My oncologist and the pharmacist informed me that Taxol tends to be easier to handle. With me, I agree tremendously. By my 3rd and last dose of Epirubicin and Cytoxan I was down and out in bed for 5 days, which is NOT like me. With the Taxol, I still have my worst days on Thursday and Friday but I handle them pretty well. If I can, I nap when my 2 year old daughter does and I go to bed early. Otherwise, I am doing pretty well. I have some neuropathy, primarily in my face of all places, but it's not continuous or painful. 

    I have a 5 year old son and a 2 year old daughter and I am able to mostly keep up with them. LOL Some days I'm too tired to chase after them but we try and do something most days without any issues. My quality of life is not interrupted for the most part. I would hope the same for you!

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    Just my two cents here to add to the self breast exam war front.  I would like people to also pay attention to nipple discharge. I was diagnosed with IDC and DCIS. I had slight unilateral nipple discharge for a few months before my diagnosis, I mentioned it to my breast surgeon when I was diagnosed with only DCIS. He never thought much of the discharge. Turns out, I had an invasive tumor behind my nipple the whole time, my surgeon then agreed that the discharge was probably from that, in hindsight. So please, as we teach our peers lessons we have learned in this road we are on, don't forget how powerful your intuition is. I do mammograms for a living and everyday I have to urge women to have yearly mammos, even when their doctors tell them they don't need one yearly or they can stop having them altogether!  I know mammos don't find everyone's breast cancer but it's the best imaging screening tool. All women's risk increases, not decreases, as they get older. 

  • megomendy
    megomendy Member Posts: 63
    edited July 2014

    MomMom, I just had to skip my second Taxol infusion (I had 8 already, am waiting for #9). I had my neupogen ready thinking I'd be using it this w/end, but my counts were still too low. (My gran wbc # is also .9 and 1.7 for overall.  I dont know if my MO would consider ending taxol a week early for me. I'd love it. I just hate that this is extending my chemo to longer into the summer. I have 3 wks off the end of the summer and I really wanted to get a chunk of my radiation done then rather than leave work early every day in Sept.

  • Jules_NY
    Jules_NY Member Posts: 74
    edited July 2014

    Mom and Mego. Same thing happened to me just before taxol #4 , whichwas canceled. My total count was 0.9 and my absolute neutrophil count was 0.3. I had to be admitted. They just added number 12 to the end. Torn about how I feel about it. In the end I'll be glad. Just bummed that my last taxol would have been next week. It pushes my surgery one week also which helps in a way. I'll still be on sick leave the first week of school which means I will def be able to put my kindergartener on the bus. Gotta look for the silver linings no matter how small!

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    As far as ending Taxol early, my MO is a firm believer in sticking it out, if possible. Although it sucks I tend to agree. I can understand if the problems are life threatening but the nuisance ones, well, yes they are a pain but you're already deep in this why not stick it out if possible? God, if I could not do my last 2 ACs I would jump for joy but I gotta do it. Jules and Meg- hang in there!!

  • MomMom
    MomMom Member Posts: 334
    edited July 2014

    Xrayali, Jules & Megomendy,  Thanks for the responses.  I thought more about it and decided I'm already a half a year into this, what's another week!  But still, ugh.  My overall WBC was 1.6.  Hoping a week off will raise my numbers by Thursday.  But if not, I'll find the Neupogen, do the shots & get the infusion.  Wonder what the threshold is for having to go to the hospital and get a transfusion?

    Paula

  • Jules_NY
    Jules_NY Member Posts: 74
    edited July 2014

    There is no transfusion for WBC's. One shot of neupogen helped me. It went from 0.9 to 2.1 in less than 6 hours then kept going up I over 4 on the next 24 hours.

  • MomMom
    MomMom Member Posts: 334
    edited July 2014

    Great info!  Thank you Jules.  Happy 4th!

    Paula

  • MDnowPatient
    MDnowPatient Member Posts: 7
    edited July 2014

    clarrn,

    Not at all. I agree with you.  Hearing other's experiences with healthcare providers will hopefully help me better understand my own patients.  Medicine is an art.  I try to find a balance using evidence based medicine, "doing no harm", and providing therapeutic listening and support.  It isn't always easy.  

  • MDnowPatient
    MDnowPatient Member Posts: 7
    edited July 2014

    Thank you everyone for the warm welcome. 

    Mommom, I'm so sorry to hear about your delays. I agree with Jules that I'd expect you to respond to neupogen for the remaining taxols. Since you physically feel fine, I'd encourage you to finish the 12.  While I'm sure the survival difference between 11 and 12 cycles is nominal, there is a reason 12 cycles were decided upon.  If it were me, if I ever relapsed, I'd always wonder if it would be different if I had the cycle (doubtful, but I know I'd obsess about it).  

    Julie, I love your attitude. If you haven't read "Silver Linings" I recommend it.  I am not a religious person, but I do believe that the universe tends to make things happen the way they are supposed to (of course this is not all inclusive just a pattern I notice). Maybe your 5 yo needs you to be there with him to put him on that bus. Delaying the surgery a week will not make a difference. The plastic surgeon I wanted to do my reconstruction was on maternity leave for the past few months.  Because I had to do neoadjuvant chemo, I get to use her for the reconstruction.  Weird how that happens.

    Xrayalli, the guideline regarding mammos every 2 years is one of the only ones I have no adopted.  It is such an easy, uninvasive, low radiation test, that I encourage yearly mammos. I only stop pushing mammos in my very elderly (with their input of course), who I feel would not be a candidate or able tolerate a lumpectomy (most would have no problem). 

    Taxol #1 was uneventful.  I had a very productive day of cleaning every corner of my house today thanks to the steroids. I also say my surg onc who thought the AC shrunk my tumor on exam in half.  That was exciting.  He said he expects it will respond even more to the taxol.  This morning, I noticed I do have the same very sensitive fingers and toes that I had for several days after the last 2 ACs. I'm sure this is a sign of things to come but I'm ok with that.  

    Thanks again,

    Marisa

  • muska
    muska Member Posts: 224
    edited July 2014

    Happy Fourth of July, Ladies!

    I completed 12 weekly taxol treatments in Jan 2014 and most of the side effects I experienced at the time are gone except for one: my left foot is still swollen and this gets worse if I sit for a long time (I have a sitting job) or the weather is hot. I was told it may or may not go away. It gets better when walking, exercising and swimming but doesn't seem to improve much overall. 

    Have you encountered this problem and what advice were you given apart from wearing compression sockings?

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Happy 4th of July everyone and I hope you all have a side effect free weekend!

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited July 2014

    joining in here! Had 4th taxol yesterday. 8 more to go, finding it much more tolerable then AC. I Am also finding my vision blurry- think the extreme dry eyes are not helping! 

    Sandra

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Sandra, welcome! Glad to hear that Taxol has been more agreeable for you! I get the fuzzy eyes and slightly blur vision sometimes too. Mine seems more prevalent in the evening.

  • MameMe
    MameMe Member Posts: 215
    edited July 2014

    Alli, How are you doing with the AC? 

  • Tinkerbells
    Tinkerbells Member Posts: 53
    edited July 2014

    thanks sinsin! I spoke too soon! Today I noticed blisters in my feet! Oh well- just adding to the paranoia list to discuss with onc Tuesday!

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Ugh, I'm sorry! I haven't heard of anyone else getting blisters on their feet. Hopefully, there is something you can take or use to help with that!

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    MameMe-AC is quite harsh on me, I have to not do much of anything for the 4 days following the infusion. Heartburn and constipation, stomach pain. I've been trying different things to hopefully have an improvement in SE from each infusion to the next. By the time I have it down pat I'll be finished!

  • jenwith4kids
    jenwith4kids Member Posts: 216
    edited July 2014

    I have blisters on my feet. ...sort of.  More like thin peeling skin..

    I have been taking prilsec every morning since my second AC...had terrible heartburn,  but that eliminated it.  Doc said to keep it up for the whole course of chemo.

  • MameMe
    MameMe Member Posts: 215
    edited July 2014

    All best to you, Alli, that's no walk in the park. Can you take some days off to sleep? Hope so...

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    I take off those 4 days and leave early whenever I'm not feeling well, if possible. Sometimes it's hard because I'm the only one there at the time doing mammograms. On my office days it's easier. 

    So sick of putting chemicals into my body, just want to feel normal again. 

  • MameMe
    MameMe Member Posts: 215
    edited July 2014

    Alli, With major surgery and then two types of chemo since January, I am amazed that you can do what you do. Its hard to stay home when work is short handed, for sure. Hope you can find a way to get adequate time for rest and repair. ((hugs)) Mame

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    I'm with Mame, Alli! Hang in there! You are certainly one strong woman! You're doing awesome!! Hang in there!!

  • Xrayalli
    Xrayalli Member Posts: 61
    edited July 2014

    Thanks Mame and Cindy for the words of encouragement! I see the light at the end of the tunnel and I am actually excited that I can work full time in August and most of September before my next surgeries. I need exchange surgery on the left and redonstruction(reduce and lift) on the right. Funny how surgery seems like apiece of cake compared to 5 months of chemo.

  • Sinsin
    Sinsin Member Posts: 200
    edited July 2014

    Haha! I hear you on the surgery! I would much rather do surgery over chemo! LOL

  • clarrn
    clarrn Member Posts: 160
    edited July 2014

    I agree on the surgery thing.   BMX with immediate recon over AC any day! !

  • Jules_NY
    Jules_NY Member Posts: 74
    edited July 2014

    Nice to hear that!!! My BMX is scheduled for 8/11, post chemo.

Categories

Join Us on Zoom: Upcoming virtual meetups. Read more...
Give your account some personality! Add a profile photo.