Taxol Chemotherapy

Options
1235733

Comments

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited January 2012

    Kim137- I will keep you posted as the day unfolds..soon enough we will only have to decide to grow our hair long again or keep it short..it will end..it just has to!!

  • forestgirl46436
    forestgirl46436 Member Posts: 7
    edited January 2012

    I had my 1st Taxol tx on friday Dec 30th. Saturday I was fine. But on sunday at noon my nightmare began. Every joint in my body hurt unbelieveable...hips, knees, ankles, wrists. Horrific pain. I also had muscle pain as well...stabbing, throbbing.squeezing, aching, burning, throughout my entire body. I never saw this coming at all. I almost went to the emergency room because it was that bad.

    I went and had my neulasta shot on tuesday, and it felt like i was being stung by 100 bees. and when they drew blood that hurt just as bad. I think I had finally hit my pain threshold, and I was crying and the tears were flowing. The nurse held my hand until I could regroup, she was nice.

    Here it is now wednesday and i am finally getting alittle relief. I have been taking ibuprofen, and norco (vicodin). It is like nothing could stop the pain. I have been using heating pads, and my sister gave me pain patches for my joints. So 3 1/2 days of pure hell. I also managed to soak in the tub with espom salts. That gave me a little relief, but it didnt last long.I just wonder when the pain will stop ??

    I suffer from fibro/cfs. So I bet the taxol made things 100 times worst.  Gonna talk to my onco next week, and let him know how severe this is. Good luck to anyone on this drug. And please reply especially if you suffer from fibro/cfs. Thank you all....and keep talking, that is how we learn from each other.

  • capinva
    capinva Member Posts: 138
    edited January 2012

    Tomorrow is my #4 of taxol. My eyesight was weird thru A/C but no change with Taxol. So far no neuropathy either.

    Tappy - Advil didn't help my bone pain at night. I switched to Tylenol and now I can sleep without waking up in pain or restless leg. For me the Tylenol is much better. I'm sorry some people are not helping you. I also find it hard to ask for help but I think that is a lesson I need to learn. I need to learn to ask for help when needed. My kids have certainly learned to step up to the plate when mom can't do it all. Hang in there, praying for you.

    Good luck everyone, hoping for no SE for all.

  • TAPPY
    TAPPY Member Posts: 283
    edited January 2012

    Let me know how the support group thing goes...I am going to go on Tuesday.

    I am sure I will cry if I have to tell my story...but hoping to meet some friends who can relate.  I have never done a support group so I am not sure how it will work or if it is just fellowship.

    Bone pain is better today, but the fatigue is getting me

  • Quaatsi
    Quaatsi Member Posts: 385
    edited January 2012

    9th Taxol tomorrow. This past week I have almost as much energy as I had before my surgery....weird but I will take it!!!  Each day is a new day so I wonder what is next....

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Qaatsi--I'm finding that I have more energy too. And nice not to be queasy and nauseous all the time as with the AC I did first.

    I hate the steroids though. I've had NO reaction to taxol and and wish I could stop taking them orally the night before since they give them to me again in my IV anyway.

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited January 2012

    Quaatsi- great on feeling energetic!

    ClaireinAz- today I am embracing the steroid high..cleaned the whole house and I'm heading out for a walk..and its only 10am..lol..I'm sure the crash is not far behind!  Considering how crappy I felt from the neulasta after the AC tx I will take this new found goodness that taxol is bringing..at least so far.

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited January 2012

    Claireinaz:   I would talk to your onc about stopping the steroids.  I get the IV steroids and benadryl the day of chemo (I'm on weekly taxol) but other than that, no oral steroids.  It doesn't hurt to ask...  I have been through 6 treatments with now reaction.  I anticipated my steroid crash today but the lil man actually slept in with me until 8:20 this morning, so I'm feeling pretty good actually!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    Thanks Minimacsmom...I think i will--or just slightly reduce the dose myself. I'm operating on 5 hours of sleep since yesterday's tx and am jittery, nervous, and tired at the same time. Not a good place to be with all that I have to do on a daily basis.

    I only got IV steroids the day of AC tx and did fine.. .of ourse that was every two weeks, not weekly, so it looks like I'll be getting more steroids overall now with my weekly taxol treatments.  I think weekly in an IV seems like enough, since I had NO reaction to taxol at all so far.

    Claire

  • shore1
    shore1 Member Posts: 739
    edited January 2012

    Forestgirl, you may already know this, but taking claritin with the neulasta shots can really help. I don't know if all of your aches are caused by the taxol or neulasta, but I took a claritin the day before, day of & day after each neulasta which I only got during AC. Now, im done with 8 of 12 weekly taxol/herceptin. Minimal to no side effects. I take a vitamin b complex and 30g of gluramine a day too & so far no aches or neuropathy. Maybe you can ask your nurse about giving claritin a try. Hope you feel better soon.

  • shore1
    shore1 Member Posts: 739
    edited January 2012

    Forestgirl, one more thing I wanted to mention since you have only had 1 taxol so far. By the 5th one I noticed nail discoloration starting & have read a lot about nail loss with taxol. I tried tea tree oil after seeing it mentioned with regard to nails. It has helped because the discolored nails look much better & no others have started turning purple yet.

  • edyem
    edyem Member Posts: 38
    edited January 2012

    Claireinaz I only do the steroids in my IV during treatment. The onc left it to me to decide if I need more so I have a bottle of dexamethasone to use as needed. I go for #11 tomorrow and I haven't used it yet. My sleep is better than during AC when I took more steroids. I bet you could do it with less.



    Funny how the SE's can differ from person to person. During AC I lost several toenails, but during weekly Taxol my fingernails are completely healthy. They seem to be growing like crazy! I wish I could say the same for my poor brows and lashes. Without them, I really have what I call "cancer face". I just look sick.

  • Quaatsi
    Quaatsi Member Posts: 385
    edited January 2012

    9 down today!! 3 left in this round!!! I bow and now will shuffle off to bed (despite the fact that the sky is still with light). 

    until tomorrow.... 

  • NWArtLady
    NWArtLady Member Posts: 360
    edited January 2012

    Hi all,  I finished Taxol last Friday (yay!) and took this week off to rest after 5 months of chemo (4 AC + 12 Taxol).  Feeling ok, even went to a faculty meeting last night! Still having odd side effects here and there including a rash on my left elbow and I'm breaking out on my face (that hasn't happened in a long time!).  Still going for my daily walks with my dogs; exercise has been the lifesaver throughout the chemo!!

    My main issue now are my nails.  My toenails seemed to have calmed down but my fingernails continue to lift and 4 of them have fluid and an odd smell. Yuck! My oncologist says they are ok - no infection - but I'm grossed out! Others on this board recommended lavender oil and I looked into that. It evidently has anti-fungal effects, so I mixed 3 drops of lavender oil with 1 tablespoon of olive oil and dip my nails into it after cleaning them with an Epsom salt soak.  Seems to be helping and the lavender certainly helps with the odor!  Any other words of advice would be appreciated. They are sore, but I'm hoping to be able to keep them!

  • sammolisa
    sammolisa Member Posts: 180
    edited January 2012

    Praying for my sisters going through Taxol.  I went through it a year ago,   AC  DD for 8 weeks and then Taxol  DD for 8 weeks.   The first tx if Taxol was on a wednesday.  By that friday night I was in excruiating pain from the waist down, could hardly walk and the muscle spasms made it all worse.   They weren't just spasms, they were out and out jerking of my legs.   HOT HOT baths followed by cold ice packs were the only thing that got me any rest.  Drugs didn't touch it.   If I had to do it again, i would have had my hubby take me to the hospital and knock me out it was so bad.  The onc turned the dose down and after that it was fine.  Still have lingering numbness and pain in my hips and overall weakness and fatigue.   Neurologist put me on big doses of B complex which helped alot.  Along with cymbalta. 

  • MiniMacsMom
    MiniMacsMom Member Posts: 595
    edited January 2012

    edyem:  I found this video blog when I was learning how to tie headscarves, but what I like even better is her directions for eyebrows and lashes.  She does an amazing job drawing on fake lashes. 

     http://eyelineher.blogspot.com/2011/05/recreating-eyebrows-with-make-up.html

  • shore1
    shore1 Member Posts: 739
    edited January 2012

    NWArtLady, congrats on finishing taxol. For your nails, try tea tree oil. Its helping mine a lot.

  • NWArtLady
    NWArtLady Member Posts: 360
    edited January 2012
    Thanks shore1!
  • edyem
    edyem Member Posts: 38
    edited January 2012

    Minimacsmom, thank you! I love these videos and her hats as well. Her makeup option for lashes is just what I need because the falsies are a huge pain.

  • TAPPY
    TAPPY Member Posts: 283
    edited January 2012

    Woke up this morning...my nails feel strange, does that mean they are lifting ?

    Also my right foot feels like it is asleep all day...is that the taxol working its magic  ?

  • jacee
    jacee Member Posts: 1,384
    edited January 2012

    tappy-probably yes on both accounts. Be sure and let your Onc know.

  • Nancinurse
    Nancinurse Member Posts: 8
    edited January 2012

    I am struggling with neuropathy still so decided to login and read about the experience of others. I did DD AC X4 followed by DD Taxol X4. They all thought I would breeze through the Taxol as the AC really knocked me off my feet. I didn't have the nausea but had loss of appetite and extreme fatigue with the AC. So I was looking forward to starting the Taxol - but changed my mind after the first dose. I had bone and joint pain for the first 2-3 days after the Taxol infusions but, thankfully the pain lessened each time. However, the neuropathy started after the first treatment and I have struggled with it ever since. I have some loss of sensation along with hypersensitivity in my hands and feet. Its not painful but is very annoying. My fingers constantly feel irritated, almost as if they were rexently burned. My last chemo was 8/9/11 and I have only seen some improvement in my left hand. My right hand and both feet are still bothersome so much that I have not considered going back to work yet. I have been on Gabapentin, a drug used for neuropathy, and can't function without it. It is now almost 5 months since my last treatment and I am now also noticing joint stiffness, especially my ankles and knees. I am hoping to hear from someone with similar symptoms as to if I should be hoping for improvement or if I should start to consider this a permanent SE.

    Best wishes to all of you who still have further chemo to go through. Thanks for sharing. It helps to hear other stories.

  • Reality
    Reality Member Posts: 782
    edited January 2012

    I completed Taxol Aug 30, but chime in every now and then....I asked for a reduction in steroids and felt SO much better - also, the awful leg pains I had ended immediately after Taxol ended! At least that is something to look forward to. I did not know about icing, so I lost several nails - they were all back to normal by November and growing normally now. I do have persistent neuropathy in my toes, but warm socks and exercise help a lot. 

    Best wishes to all of you!  

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited January 2012

    Tappy- was this your first taxol?  I had my first taxol on Wednesday..I have felt strange since then..not bad..just not  good..but oh do my knees ache!  Although this is definitely better than the neulasta effects after AC, I'm curious if this achiness will just last and last.

  • TAPPY
    TAPPY Member Posts: 283
    edited January 2012

    I took 4 AC and 4 DD taxol.  On number #2 - I did not think I would loose my nails with only 4 treatments - but they feel really sensative, - does icing really help ???   This really upsets me for some reason most so than the hair because we where sandals here all the time :(   What else can be done to helpwith the nails ???

    I am having bone pain off and on and just started with the neo, in the left foot,  I dread #3 treatment asthe bone pain seems to last longer :(

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited January 2012

    Tappy- I have not experienced any issues with my nails as of yet, fingers crossed. The thought of my nails falling off freaks me out a little.  I also had 4 DD AC and I have had just 1 of 4 DD taxol so far.

  • stjude10
    stjude10 Member Posts: 390
    edited January 2012

    Tappy, no nail issues here either...yet. I am watching them closely now. Does that mean the Taxol's not working?

    Kelley, I too have had 1 Taxol and am getting ready to go in for #2 this morning. Not in a good place today in my head.

    Finally feeling better from this cold I've had since Christmas Eve. Still have some cough, but that was probably the worst I've ever had. Hoping I''m not too miserable after tx this time. Ready to do something fun. 

  • Quaatsi
    Quaatsi Member Posts: 385
    edited January 2012

    Hi all-- I had my 9th Taxol last thursday-- it is amazing how variable they are. There seems to be no pattern for me. The 8th one was a breeze-- I had energy the whole week but this last one...not so much...  my legs ached to the bone and I had some lymphatic swelling in my arm.  I try to get regular exercise and when I needed it the most, I was too worn out.  Here's to the joy of chemo!!! 

    I have only 3 left and I am counting them. I hope to find out today that my insurance has approved the use of Navalbine for my next round!  wish me luck.... 

  • kelleysgroi
    kelleysgroi Member Posts: 227
    edited January 2012

    Stjude10- best of luck today..i know the feeling of not being in a good place..still struggling with the depression..I feel like this crap is killing me..Im hoping you have minimal SE's

    Quaatsi- Im counting on that lack of a chemo pattern as this round has been rough..maybe the next 1 will be better..trying to keep snging that song..

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2012

    I had my Taxol #8 of 12 last Wednesday.  The steroid was reduced from 15 mg to 4.  I thought this might be a good thing after reading here but instead of having at least one good day post chemo, I had no good days.  I even had pain in my feet and knees as well as muscle pain in my legs.

    Today I'm tired, but less tired than yesterday and the day before.  I'm going to work in a bit and will hope I can get in 6 hours.

    Taxol #9 is tomorrow.  I will also see an ENT about my sinus infection, though I'm beginning to suspect the whole thing is chemo induced and not bacterial.  Four rounds of antibiotics and I still have it.  It only got better the week that I skipped chemo.  Thanks for listening.

    Chemo sucks!

Categories