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…322323325327328…426

Comments

  • lg10
    lg10 Member Posts: 37
    edited July 2018

    Thanks, moth. I really do appreciate it and I think these studies are important, but I'm kind of done with statistics at this point. I got breast cancer at 31 with no family history. Those chances are so small and yet here I am. I do plan to live a healthy life and minimize bad foods and chemicals, but there is also a quality of life that I refuse to give up.

  • chef47
    chef47 Member Posts: 58
    edited July 2018
    hi ladies! I am on weekly taxol for the duration. Just wondering if anyone on this board is in the same boat? Either way I just finished #9 and it was pretty horrible. The bone pain, fatigue, low grade fever oh my! I just had scans that the dr says are good, stable bone mets and decreased lung and liver Mets. Yes I am pleased that the chemo is working but after this last treatment I’m feeling like I need a break or something. I’m wondering if I should expect next treatment to be even worse or if for some odd reason just once in awhile the treatments are worse than others?? If I’m on the wrong board I apologize but I can’t find much info on weekly taxol for stage 4.
  • mLghtn
    mLghtn Member Posts: 68
    edited July 2018

    Hi All,

    I don't post much but really appreciate everyone else's and regularly read them. I just wanted to post again for those having a lot of pain with weekly taxol. I was switched to abraxane and it made a huge difference. It is still paclitaxol but in a different solvent, its albumin (protein)bound instead of the oil solvent used in taxol and generally tolerated much better. My MO switched me because I had almost intolerable pain on Sun Mon after thurs infusion. I felt like I had been hit by I truck, couldn't get out of bbed much and it hurt to breathe. MO says they recently switched another pt for the same reason and some people just seem to have this extreme reaction. The problem is abraxane costs like 20K per infusion or something ridiculous like that, so insurance won't approve it unless MO addresses intolerance to taxol for the pt. The other nice thing about the abraxane protocol is that insurance will only allow me on a 3 week on and then 1 week off schedule, and I am really enjoying the week off. Also I completely recovered from the anemia I had that started during AC on my first week off of the abraxane, and been feeling much better in general as a result. I know this abraxane protocol is used long term for various advanced cancers including breast. And I want to add that they told me not as much neuropathy is experienced with it. So far I have had 8 doses (including the first 2 taxol) and I just have a little tingling and pain on fingers of my right hand that comes and goes (I did have this at times before chemo due to herniated disc in my neck but its definitely gotten worse with the paclitaxol). MO doesn't think its from the chemo because he said it should be bilateral then and also usually starts in the feet. IDK about that, but I'm just glad everything is manageable and I only have 4 left now of 16 total chemo. 3 more in a row is no big deal when I know I get another week off before the final dose, and one single dose doesn't seem to cause so much fatigue on its own, so that 4th dose at the end probably won't feel too bad. Finally seeing the light at the end of the tunnel! Wishing everyone well and congrats to all who are done!

  • chef47
    chef47 Member Posts: 58
    edited July 2018
    mLghtn! Wow thanks for that info! One of my problems thus far is that by the time I get to my dr appt every 2 weeks I’m feeling so much better that I haven’t really let them know just how bad it gets. This past one knows knocked me down for sure. My jaw is stiff and achy and honestly can’t hardly walk for the pain and stiffness in my legs and hips. I haven’t heard of other people having this level of pain, I’ve mainly just heard about mild achy ness? Which made me think “well maybe you’re just being a baby” just to know someone else can relate really helps. I will call my drs on Monday and let them know how bad it has gotten. It just sucks since I finally got good scans and now I feel like I’m a quitter if I call this off or even need a break.
  • mLghtn
    mLghtn Member Posts: 68
    edited July 2018

    Oh, I forgot to add that my hair is growing back everywhere except my underarms. Hair on my head, eyebrows, and eyelashes are coming in nice and even--just sort of a none color right now--I would say white and ash/grayish brown? Happy to have it regardless of the color. It did make me a little nervous at first, but MO assured me chemo will still work and the texture is very different from before, its super fine and soft compared to before but there is a lot of it. I'm guessing this baby hair will turn into real hair after I'm finished with chemo. :)

  • mLghtn
    mLghtn Member Posts: 68
    edited July 2018

    Chef 47 I'm glad you saw my post. I did call my MO crying on the second Sunday when the pain was really bad and I felt like I couldn't deal at all. I think it helped for him to hear me then as I am also not normally a complainer or overly emotional when I see my MO.

  • JackyR
    JackyR Member Posts: 39
    edited July 2018

    Ingerp, we are all counting, aren’t we? Lol - I have 7 left. 😬

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    Jacky at what point do we convert to hours??

  • Pots
    Pots Member Posts: 189
    edited July 2018

    Chef 47, I just finished #14 yesterday. At #9 I had to take an extra week off, had a fever that was due to infection, so don't be afraid to ask for a longer break. I've had to do it twice. For foot and leg pain, I take Tylenol at night when my feet are burning and I have shooting pains. Or ask for script for Gabapentin, which others have recommended. For sure Neuropathy gets worse as I go along, taking L-glutamine, Vit B6 and Vit B12 and icing hands and feet during infusion. I also got a dose 10% dose reduction to help manage symptoms.You're not a sissy for asking for a break, you're doing a marathon now!

  • JackyR
    JackyR Member Posts: 39
    edited July 2018

    Haha - Ingerp, when you’re down to the last one!

  • Calee65
    Calee65 Member Posts: 41
    edited July 2018

    Aalmost 4 weeks since my last taxol...I’m so excited..today I finally can see eyebrows starting to grow back! I think I missed them more than my hair..hahaha. Hair is growing in patches, first as white fuzz and then turning darker. Still very fine and soft, but it’s exciting to see!

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    I'm very excited for you Calee!! My last Taxol is this Friday and I'm hoping to see some new growth around Labor Day. I love hearing good news like this!

  • Frog-on-the-lilypad
    Frog-on-the-lilypad Member Posts: 159
    edited July 2018

    Congrats ig10 on completing chemo. It is definitely worth celebrating. My MO did mention about alcohol consumption being a risk but also said that I should not hold back from the occassional drink to celebrate special events.

    I did Taxol 10 today, the pain/ numbness in my fingers has worsened. I believe I will be getting a lower dose of Taxol the next 2 weeks.

  • Hariry
    Hariry Member Posts: 100
    edited July 2018

    Ig10 & ingerp,

    Well done both of you to have completed chemo!... for radiotherapy pls remember to cover all areas including the armpit with your moisturizer. Mine got burned coz wasn't covered.

    Regarding drinks, yea, I took some sips after all the treatment ...with guilt! I know it should be fine. Argh... would life be easier or the other way round?


  • nellabella
    nellabella Member Posts: 74
    edited July 2018

    Hariry do you mean before or after they administer rads to moisturize ? I’m not there yet but first time I heard of this. Seems you are saying before.

    Thank you

  • Naesha
    Naesha Member Posts: 44
    edited July 2018

    hello everyone,

    Just done with two cycles of Taxol. I have third cycle this Friday , 10 more to go. I cannot wait to complete this 12 cycles. First cycle of TX was much more easier than AC. First and second day was good going but third day was little worst. I was tired and fatigue made me sleep most of the time. Then I was back to normal and fresh from fourth day. But second cycle has been little hard than the first one. Bone pain on first and second day, More fatigue and tiring on the third day. Since everyone was saying that TX will be lot more easier than AC, i was expecting that there would be very minimum SE. Going through all the conversations on this thread is making me nervous for upcoming cycles. :-(. I also had very low fever on and off and getting the hot flashes as well. My OC prescribed a medicine for hot flashes but it hasn't been helping a lot.

    Good luck to everyone out there , we will get through this :-).

  • Hariry
    Hariry Member Posts: 100
    edited July 2018

    Idkidk, to sum up others experience and mine, moisturizer should be applied few hours BEFORE rads, and asap AFTER rads. I'm repeating the advice to cover the armpit because I wasn't aware of that until I got burned. A pain. Hope no one else would suffer from "not knowing"

    Best wishes to you.

  • moth
    moth Member Posts: 3,293
    edited July 2018

    Did anyone else lose their sense of smell? How long until it comes back?

    I smell some things so I thought my sense of smell was returning but turns out I'm not smelling other things at all. I apparently had a really stinky dog crate in my van & didn't know about it. I can't smell it at all but my dd says it reeks of wet stinky sweaty dog.

    Now I'm paranoid that I can't smell my own BO either - I'm going to have my family sniff me before I go anywhere

  • map1002
    map1002 Member Posts: 9
    edited July 2018

    Ingerp,

    A little late to this post, but, OMG I can so relate! I never had much of sweet tooth until treatment. Now, a year and some POST treatment, ice cream.. cookies..

    Ice cream always bothered my stomach, so I kept it to a minimum.. Once piece of chocolate would be fine, now I can eat the whole box.. (well maybe not the whole thing...but a lot)

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    MAP--I'm going to be gentle on myself, at least through chemo and maybe through rads. That puts me <possibly> getting back to pre-tx food habits around early October. (But then there's my birthday, and Thanksgiving, and Christmas, and New Year's, . . . ;-) )

  • JackyR
    JackyR Member Posts: 39
    edited July 2018

    Omg, glad I’m not the only one who’s wanting to eat... a lot. Meds have me hungry all the time and sweets have always been my favorite. Part of me is like, enjoy life, and the other says cancer feeds off of sweets. Trying to find a happy medium. Anyone else paranoid about this stuff?


    Naesha, I had a tough time after AC with Taxol but I’m approaching #6 and think that you just have to find the right meds to help with side effects. I take Claritin for muscle pain, B complex for neuropathy, Prilosec for acid reflux (that was a new thing for me). Once you find what works, then you can anticipate some relief. The worst for me were 1-4. Then they say your body gets acclimated to it. #6 was, by far, the littlest SEs for me. I hope you find what works for you. It’ll get better.

  • ingerp
    ingerp Member Posts: 1,515
    edited July 2018

    Jacky--I get that long term sugar is probably not our friend, but I'm not going to worry about it right now. I'm also eating lots of red meat, veggies, and fruits--just with quite a few sweet treats around the edges. Oh well. . .

  • JackyR
    JackyR Member Posts: 39
    edited August 2018

    Ha! Me too, Ingerp! I’m definitely eating more salads and proteins. But man, I could eat a cake too. 🎂

  • mLghtn
    mLghtn Member Posts: 68
    edited August 2018

    I'm done with chemo!!!SmileMy chemo ended abruptly today when I told my MO I was having increasing numbness and pain in my right hand and in my toes, and more generalized muscle and joint pain even though I had a week off. I'm on abraxane for 12 doses instead of taxol (because I didn't tolerate it ) and had completed 8, and I have a week off every 3 doses. So, it came as a shock to me since I was still thinking I had til end of August left! I thought I might get a reduced dose or something... but apparently he decided I don't tolerate taxanes well and have had enough. His reasoning was I won't tolerate all 12 and 1 or 2 more doses at this point won't make much difference in the outcome and may make a big difference in my quality of life afterwards. so appreciate him for that. I did ask the dreaded what if... there are fast growing cancer cells left at surgery time? Response I got was then I could go on Xeloda, an oral chemo that is normally for more advanced cancers---but he said its very unlikely that will happen. Any slow growing cancer left will be removed then radiation and hormone therapy. I had to wrap my head around this all morning and everything is moving very fast, they just called me and scheduled my surgery for August 30th. I am very relieved for now and hope to celebrate with a mini vacation before sx. Wishing everyone well, moving on!

  • ingerp
    ingerp Member Posts: 1,515
    edited August 2018

    Congrats, mLghtn!! Great news and kinda fun it was unexpected!

  • Hariry
    Hariry Member Posts: 100
    edited August 2018

    congratulations mLghtn!! Very happy for you!

  • llupp
    llupp Member Posts: 11
    edited August 2018

    Just compleyed my 3rd Taxol had a ultrasound today to see how the chemo has effected the tumor. Woohoo they could not find the tumor. I still have to do chemo and have surgery but this is amazing news to know all this is working and worth all this pain.

  • gussy
    gussy Member Posts: 77
    edited August 2018

    Hi lg10 - I agree with you re: not giving up everything enjoyable in life. My husband and I enjoy a cocktail and/or a glass of wine in the evening. Gives us some together time before dinner. We don't get drunk. I suppose a diet coke would be better but then, maybe not. But we are a lot older than most of you on this list so that makes a difference as well. You have a lot more time left than we do. That makes our outlook on life different. Moderation in all things is still a way to look at life. This past year has not been one I would like to repeat so it's nice to not worry about the next infusion, appointment, test, etc and just do what we consider "normal" things again.

    Gussy

  • kdrake1007
    kdrake1007 Member Posts: 55
    edited August 2018

    Had my first Taxol Tx today. I feel fine so far, much better than after any of the 4 AC TX's! We'll see how I feel Saturday & Sunday! Got to see my MO today and asked about B6, l-glutamine & icing to prevent neuropathy. She's all for the B6 & icing but said the research showed l-glutamine had mediocre results for prevention. She said a recent study showed much better results with menthol in lotions such as Biofreeze, twice a day. I'll give that a try.


    Moth - I did have totally strange sense of smell problems after my surgery and during AC (phantom smells and not smelling some things but being highly sensitive to others). Seems to have resolved itself over the last few days. Time will tell what Taxol will do.


    Kim

  • Egads007
    Egads007 Member Posts: 474
    edited August 2018

    For Ingerp.....CONGRATS!!!!!! You rocked it!!!

    image

    image

    image

    SO sorry I missed last week...I was out of town...AND the dog ate my homework! Big congratulation hugs and lots o’ luv...proud of ya girlfriend!!

Categories

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