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Weekly Taxol group

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Comments

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited April 2016

    Congrats Gabby!!

  • Ddaisy
    Ddaisy Member Posts: 18
    edited April 2016

    Gabby congratulation!!! Fantastic news:)

    Here nobody is icing they dont know about it. Me neither but so far I dont have neuropathy. I have 9 left though so will see

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited April 2016

    Gabby...congrats on finishing this chapter!

    I just finished Taxol #7 today and have been icing the whole time. Hope it helps in the long run!

  • Deaconlady
    Deaconlady Member Posts: 86
    edited April 2016

    #10 done! Found out Prince died. 😢 My nurse and I were jamming to Prince songs on BET and MTV. So sad.

    I have been really hot since I finished. Feel dizzy and sleepy. Gonna take it easy and watch Prince on YouTube and Bosch on Amazon Prime if I can stay awake.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited April 2016

    Gabby- Congratulations on your graduation day! 🎓 So happy for you!!

    Finished #9 today. Heard about Prince too. So sad. I'll always remember where I was when he passed.

    LilNutmeg- your chemo nurses are VERY lucky! What a wonderful treat that you have planned for them!

    Super tired...going to lay down now...

  • Trixie16
    Trixie16 Member Posts: 20
    edited April 2016

    Hello, hello... I am a newbie at posting but have been reading the posts for this group for some time. I completed four rounds of A/C and 3 rounds of Taxol so far; 9 more to go and I have them scheduled for every Tues. I have been cold- capping but have still shed about half my hair. Not sure I have enough hair to shed 9 more rounds so the capping may have been for nothing. Will have to see on that one. The Taxol has been much easier to tolerate. My biggest complaint currently is night sweats. I have never experienced them before but am now having them about 4-5x's every night. Any recommendations?? Will discuss with my MO on Tues. Oh, and I am also icing hands and toes during Taxol infusion.

  • kymberly
    kymberly Member Posts: 15
    edited April 2016

    Week 9 chemo today. Labs are starting to go wonky on me. Liver enzymes, bilirubin and monocytes elevated. Just slightly. They have been trending upwards while RBC trending downwards and is a little above bottom range. Anyone else seeing this?

  • Praline
    Praline Member Posts: 101
    edited April 2016

    Congratulations Gabby! I have 2 more treatments to go.

  • Maya15
    Maya15 Member Posts: 112
    edited April 2016

    ThePrincess--your post about icing results kept me going yesterday. Just got switched from weekly to dose-dense Taxol and the Taxol infusion took 3 hours. Needed some encouragement to keep going with icing for that long!

    Kymberly, my labs have been wonky for a while. Liver enzymes have been through the roof since I started AC, but they don't seem to be worried about it. RBC and WBC have been below normal and trending downwards for about 3 weeks. Now need neulasta/neupogen for WBC.

  • blamoms
    blamoms Member Posts: 86
    edited April 2016

    2 down 10 more to go. Had my grumpy nurse today but the good side was a man came in for a PICC line flush and told her he just came back from Mexico with a sunburn. She ripped him a new one. You can't suntan while doing chemo what sunscreen did you use? He said oh level 4 bronzer what's the worst that will happen a sun burn. Hubby and I jusshoke our heads. Some people just don't get it

  • MissBee123
    MissBee123 Member Posts: 24
    edited April 2016

    Sitting here in the middle of the night, up from steroids--which makes two nights with 4 hours of sleep each--and a horrible ingrown toenail! Seriously, I didn't know such a tiny stupid thing could hurt so much! I have an appointment with urgent care at 10:15 because it's starting to show signs of infection and, gee, I haven't enough white blood cells to properly combat such an infection. Stupid chemo.

    Feeling grumpy and very sorry for myself at the moment. I think I need ice cream. Bawling

  • ladyhumps
    ladyhumps Member Posts: 56
    edited April 2016

    Congrats Gabby! Hope you do well with rads. Had my simulation 4/13 & expecting a call soon from my RO's office with my first appointment. I'm hoping to start by the 1st of May, to finish middle of June.

    Some of you are almost finished with chemo and some just starting, so hang in there!

    MissBee hope you get that toenail sorted out quickly!

    Have any of you heard of this: littlepink.org? It's a group that furnishes a place to stay for vacation. Spots are filling up fast.

  • Deaconlady
    Deaconlady Member Posts: 86
    edited April 2016

    I had my rads simulation yesterday. Hoping to start the 2nd week of May. Last Taxol should be May 5.

  • Milwmama
    Milwmama Member Posts: 84
    edited April 2016

    MissBee I spent my youth with multiple intros toenails, I feel your pain. Get it fixed. .....and eat ice cream.


  • MJS1266
    MJS1266 Member Posts: 159
    edited April 2016

    I'm a patient of Dr. Wilkinson and was in the icing study.  I'm probably the one unlucky patient who got neuropathy although it is not painful but is numb, tingling and annoying.  My nails did pretty well though.  I am 15 months PFC and have seen some improvement in the neuropathy and am still hopeful it will go away.  I can't imagine how bad it might be if I wasn't part of the study.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited April 2016

    MJS, on a scale of 1-10, how bad is your neuropathy? Did you take any supplements in addition to the icing? Like L-glutamine, B6, ALA

  • MJS1266
    MJS1266 Member Posts: 159
    edited April 2016

    LMV,  The worse that I had was a 3 which was actually PFC.  It wasn't normal to get worse.  The Dr. found that I was borderline deficient in B12.  Now I take a B12 supplement and the neuropathy improved almost immediately.  During my infusions, I didn't take any supplements other than calcium.  When I finished chemo it was a 2, now I would say between a 1 and a 2.  It wasn't bad enough that we ever considered stopping treatment.  I recently started taking Tumeric but can't yet say whether it is helping.  I'm still hoping it will go away, they say it can improve up to 2 years.  If it doesn't go away, I can live with it no big problem.  Given that I had a pathologic complete response after Taxol, it was worth it.  I have no pain just numbness and tingling.  Good Luck,  MJS

  • car2tenn
    car2tenn Member Posts: 132
    edited April 2016

    I have had stage four mets since initial diagnosis in December of 13. Have tried many things. 2 weeks ago finished weekly Taxol and h e rceptin chemo. The result was fantastic. No one including the doctor was expecting terrific results. I am now in remission for the first time. I could not be happier...No neuropathy and only 50% hair loss because I used Arctic Cold Cap therapy. It was worth the effort and expense to save even a little hair. I had extensive mets so to all keep hanging in there til something works. Carolyn from Music City

  • Deaconlady
    Deaconlady Member Posts: 86
    edited April 2016

    Congratulations Carolyn!


  • Maya15
    Maya15 Member Posts: 112
    edited April 2016

    Carolyn, that's great news!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited April 2016

    Happy

    Carolyn-That is GREAT to hear! Congrats!!

  • Zoziana
    Zoziana Member Posts: 102
    edited April 2016

    car2Tenn: This post couldn't have come at a better time for me to read! I'm stressing about treatment as they can't tell if my liver spots are mets or not, (am having a PET today later but not expecting much) and I had BMX before they knew I was HER2+ (initial tests showed negative, though also am ER/PR+). So there aren't a lot of folks in my category of starting treatment for this post-surgery (this Friday I start) and they are recommending the Taxol/Herceptin 12 weeks, then Herceptin for another 9 months with AI's then and continuing. So thanks for the update!

    Anyone else: What are my best supplements to take for Taxol side effects? I already take B12, a B complex, Turmeric'Curcimin, Alpha Lipoic Acid, and Vitamin D. Anything else? Are there any links to info on this?

  • princesstina
    princesstina Member Posts: 129
    edited April 2016

    MJS - glad to hear you think it's improving - we probably passed each other in the halls at some point!

    Great news Carolyn!

  • Deaconlady
    Deaconlady Member Posts: 86
    edited April 2016

    Ok, so I have #11 this week and hardly believe I am almost done! I've managed to not lose my hair. Has anyone lost their hair this late? My scalp is itchy so it makes me wonder...

    So far only SEs have been a little numb and tingly feet and sore joints a few days after Taxol, fatigue and a little stomach upset.

  • Faith-Ga
    Faith-Ga Member Posts: 8
    edited April 2016

    Thanks ThePrincess and MJS for relating your experiences. Praying yours resolves completely MJS! I have been icing my hands and feet just using some buckets and ice. I wear my socks and put each foot in a gallon ziplock bag. Then i put my feet in the pail and cover with ice. My feet get cold but not freezing and wet. I put very thin cotton gloves on my hands, put hands in ziplock bags, then into the buckets of ice. I also suck on the ice chips. I am very encouraged hearing the results of the study. I go for my 3rd treatment tomorrow morning. I'm getting 12 weekly taxol/herceptin treatments and after that 9 more months of herceptin given every 3 weeks.

  • ddameron
    ddameron Member Posts: 1
    edited April 2016

    Hi jpmom3! So good that you are getting through your treatments with the weekly taxol. I hope that you will continue to finish and stay brave and positive. I have done Taxol # 4 last Tuesday and will be starting on #5/6 tomorrow. Yep I am going to take double doses from this point forward till I hit # 8. I am having a better time on the Taxol so far. I had a really hard time on the AC and glad that I have gotten through that part. I don't want you to feel alone and know that know matter how dark the situation is there has to be a light at the end of the tunnel. I know that I have taken less than you but I really am trying to hold on to some hope of getting through this. I am scared as well, and have small children who have to see me struggle through the rough days. I thought that I was having a menopausal moment by being aggravated but listening to your story I suppose the poison is causing me to act like a crazy lady with the children at times as well. Kinda like I am swinging from a tree, one moment I am okay and then one little thing can set me off to a delusional crazy person. Omg... I hope that you stay strong and that you survive this thing they call life. It's hard, but I know you can do it! you have to keep pushing yourself and pray pray pray! Have a good evening.

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited April 2016

    Carolyn...YAY!!! So happy for you! 🎉🎉🎉

    Deaconlady- Wow! Still can't believe you didn't lose hair...I'm cold capping, and haven't lost. Best of luck with #11 this week!

    I am exhausted today, but was out of town over the weekend...so I may be paying for it today

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited April 2016

    Zoziana, look into L-Glutamine. My cancer center recommends it. 10 grams, 3x a day. I mix it into a flavored drink or smoothie.

  • moderators
    moderators Posts: 8,643
    edited April 2016

    ddameron -- what a nice, positive and encouraging post. Thanks for joining in and we look forward to hearing more from you!

    --The Mods

  • Ddaisy
    Ddaisy Member Posts: 18
    edited April 2016

    hi ladies huuuuge congrats to those who finished our nice taxol journey be proud of yourselves we all know how tough it is. Im done with #4 and Im feeling ok. The last two were easier. Im taking 30g L Glutamine a day as well as many other vitamins like B6, CoQ10, C etc. I do believe that it helps me as I have energy and no need to stay in bed. No neuropathy, no nail issues only a moderate pain on d3. I lost my hair during AC but its heavily growing back now :D. The only thing is that my period stopped (Im 39) after #2 Taxol. I presume it comes back once taxol is finished ??

    Sending u power girls and thinking of you!!!