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Weekly Taxol group

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Comments

  • Slapp
    Slapp Member Posts: 15
    edited April 2016

    Hi Ladies! I am getting ready to start my first round of Chemo May 9th. I am worried about Taxol and the possible SE's, will go into this with the best attitude that I can. I am planning on using all of the program offerings at my hospital and that will include acupuncture. I am wondering if any of you have used acupuncture and if you feel that has helped in any with SE's from the Taxol? Also, stocking up on the Glutamine this weekend, and am looking for a good quality Vitamin and would appreciate any suggestions there. If any of you have any other words or wisdom for me, I would LOVE to hear them. I am so thankful for this group, thank you in advance for your response! Slapp

  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    Hi Slapp, I am starting Taxol 12 treatments every week this Tuesday. Plus i will have hereceptin to. I am also worried, but my Oncologist tells me that besides numbness there should not be any sideffects because of small every week dosage. But somehow I don't believe it. He suggested only take D3 2000 vitamins.

    I actually get more anxiety every day closer to a day. I also ordered cold caps from Arctic Cold caps and will try to do it. Hope it will work.. .

  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    Ddaise, you saying your hair grow back on Taxol? Wow! i was told by my dr. that hair fall off is one of sideeffects of taxol. It is amazing that yours grow. I believe i read from someone else the same thing that they hair grew back on Taxol... How can it be?

    I am planning to do cold caps with my Taxol regiment (was told it has a success on Taxol) i really hope so...

    Feeling very scared.. my first treatment this Tuesday. Taxol + triple dose of Herceptin.. Hope i have no reaction...

  • pezgal
    pezgal Member Posts: 12
    edited April 2016

    viktoryak - I know you weren't taking to me, but I had hair grow back on taxol too! I'm getting taxol #11 as I type. My hair fell out after my 2nd AC back in December. The REALLY fell out when I stated taxol (totally bald). I think cause taxol is less harsh than AC my body took advantage of it and week 3ish it started sprouting! I have a good 1/2". (Although still no eyebrows. Boo!) I think it all just depends on the person though and how your body will respond.

  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    PezGal, Thank you to getting back to me. I was told my eyebrows and eyelashes will not fall out on my regiment .. Plus Arctic cold Cap. rep. recommended Brian Joseph's brow and lash gel to save lashes and brows (I already ordered it). Maybe bcs your girls did AC first you might be right with your theory that hair started grow bcs of less stress on body. But my oncologist said that it will go away. But i am trying Cold caps.... I have such a huge level of anxiety today. I am at work and all i think is about chemo and this forum..

    According to my oncologist i will not be out of life but be "normal" . Hard to believe. He is so easy going saying no worries you will be fine with your regiment weekly. I hope so... Did it happen to you girls, were you able more or less function normally?I fell so down today it is really hard to control.

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited April 2016

    I did AC, and had my second weekly taxol yesterday. I didn't lose all of my hair on AC, but most of it. What remains is about an inch long. It will either fall out, or it won't. I found a super cute wig from Christie Brinkley and usually wear that when go out.

    I am taking L-Glutamine, B6, a complex B vitamin and alpha lipoic acid. I have felt pretty normal, enough to carry on my normal activities. I have been running a slight fever since Wednesday night, but not to the point that I need to go in. Crossing my fingers that it doesn't cross that threshold.

    My skin feels pretty dry, so I'm moisturizing well after each shower.

    Hope this info helps, Victoryak.

  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    LoveMy Vizsla,thank you! I hope you feel better. Is the temprature related to Taxol Treatment? There bad flu going on in NYC area now. Kind of a bit late in the season . I have a lot of friends sick:(

    I was told that i might have temprature from first dose of Herceptin they will give me with Taxol . The first dose is tripple.... I hope I will not. I am always active, and have a lot of social activities. I can't stay home to long it will drive me crazy... I hope and prey for easy chemo, radiation and more treatments i need to face...:(

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited April 2016

    Viktoryak and Slapp-we can all attest on here that we were in the same place you were prior to chemo starting......nervous on how your body will react and what to expect. As you can see from this forum, we all are marching thru and what you make up in your mind is usually worse that what it actually is. There are side effects but your MO's try and do a great job on mitigating those as they see how you do on the first one. I also had AC first so Taxol has been much more tolerable for me also compared to AC. I am on #9 of 12 and ice my hands and feet each session, take L-Glutamine, Lipoic Acid, B6/B3 daily during Taxol and have had no problems or neuropathy so far :) We are all here to support you and the ladies on here have lots of great advice to share!! I also do acupuncture weekly and have done so since I started chemo in January and it has also helped with it all!!!!


  • viktoryak
    viktoryak Member Posts: 238
    edited April 2016

    I asked my oncologist about supplements and he said only D3.Nothing else. Will double check with him about Glutamine. I am not questioning his authority (and i was told he is a superstar of oncology) but why no other supplements were recommended to me? I will also ask him if i should do acupuncture (never done it before). Also he said hospital does offer icing of nails. i will try to do that to. Not sure how will i take it with cold cap on the head and nails and toe nails dipped in ice...

    I can't wait for my day of chemo. I want to be over with first one so to calm down on the anxiety to know what to expect. I think expectation is the worst.

    I think my husband getting fed up with my mood..Ladies, thank you! you are great support.


  • pezgal
    pezgal Member Posts: 12
    edited April 2016

    I've been taking glutamine and B6. The tips of my thumbs feel a little bit strange, but otherwise ok. My MO didn't recommend anything either but when I brought it up to her she said that, yes, it helps with some ppl, not with others, and gave me a recommended dose. I personally think the l-glutamine helps me. I think they don't routinely talk about supplements cause, like EVERYTHING else, everyone's experience/reaction is different. Idk

    As far as activity level, I've been on this path since early December and have worked the whole time. I also have a 4 yr old kid that try's to keep me busy. I've needed more naps and to take some things a little slower, but have been able to keep up fairly well. You'll be just fine! Like FLYGIRL said, anticipation is the worst.

    12 weeks from now you'll be giving advice and telling ppl they'll be just fine :)

  • HausFrauMi
    HausFrauMi Member Posts: 113
    edited April 2016

    Hi there! Just completed #3 taxol today. It's def better than AC but really only because I am not getting the Neulasta. It has its own SE's -- itchy eyelids are my biggest complaint the last 2. It lasts about 2-3 days. Eyelashes have been thinning which drives me crazy. Feels odd lost most of my hair on AC I shaved it but def a color difference where it didn't come out and the peach fuzz that has been growing back since before I finished AC. Leg hair didn't fall out but had to shave to wear capris when we had a tease of warm weather :(. Lost pits and lady parts Hahaha

    Normally the Benadryl knocks me out but today it didn't seem to have the usual effect. Hmmmmmm and now I am wide awake at 2:30am. The steroids have not kept me up before. The hot flashes are killing me. It's been cold and wet which has really bugged me since chemo started. Before chemo 40 degrees felt warm! Now 50 is bone chilling. Today my ring finger is def swollen but haven't worn my wedding rings in a few days. Chemo brain placed them in a kitchen drawer and I kept forgetting to retrieve them.

    I may have noticed a bit of tingling in fingers and toes or it could just be the cold....time will tell. My nails have grown like crazy since chemo. I take b12, vit d, b6, Claritin, Zyrtec, flintstone (for the iron), cranberry -SE from Cytoxan YAY, Prevacid, and then when my allergies act up OTC cold meds. I switched from extreme constipation to almost diarrhea/soft and occasional constipation so then I throw in sennakot when the daily coffee doesn't work.

    No nausea which is good! Fatigued so I try to pace myself. I make sure I have enough energy to let the kids lead a fairly normal life.

    I'll finish July 1st hopefully. Then lumpectomy with lift/reduction Aug 3 and start 6-7 weeks of radiation Sept 10th.

    Looking forward to smaller and perky boobies. These are hot and heavy and not in a good way anymore!


  • blamoms
    blamoms Member Posts: 86
    edited April 2016

    I had my third Taxol yesterday. Mr Doctor lowered the steroid amount after I was telling her about the occasional heartburn I get she thinks it might be from that. Didn't fall asleep during treatment but came home and had a 3 hour nap. It felt like heaven. I know after my treatment on Fridays I don't sleep well for the next 2 nights last night was 3am. But I slept in til 9 and feel pretty good. My nails are growing pretty good. I have a bit of bone aches on Mondays but other then that it is so much easier then AC. I paint my nails dark colours to see if it helps with not getti neuropathy so far so good

  • Ddaisy
    Ddaisy Member Posts: 18
    edited April 2016

    Victoryak, Slapp: please do NOT worry about Taxol. I know its easy to say but Dwfflygirl has right we all went through on it and Taxol is way easier than AC.

    I remember I was also worried a lot before I started Taxol because I could not imagine how the weekly chemo works and how my body reacts. AC was tough but I used to the 3 weeks cycles, I learnt and experienced that the 1st week is the worst. Then I was alright on the 2nd and kinda could live my normal life on the 3rd. But then Taxol had to start and I was terrified with the thought that I have to be in the Hospital every week getting the nice cocktail. In addition only 1 week I have in between instead of 3. YAAAYYY... Of course I was told that Taxol is easier and weaker but still.. Before I started AC I put together a survivor list of vitamins and herbal teas. I brought them with me to my 1st AC coz I needed the Oncologist's approval. She was happy with all of them and since then I have been taking them. My blood test is perfect so far all is in the normal range and my Onco is happy. So Taxol has started in January. The 1st week was the worst but not bad! I felt tired and had bad pain in my muscles and bones. I had it on D3,4,5. Only. That time I asked the girls here what to do with bone pain and they suggested LGlutamine (will be always grateful for your help Ladies!) . Also asked my Onco who said that yes good idea. From Taxol 2 I have been taking LGlut 20g daily together with my vitamins and herbals. Since then I have moderate pain on D3 only but I can live my normal life. I have energy and my hair is growing back. I am not saying that I can keep my hair during Taxol but so far its growing so I decided not to shave it:-) If it starts to shed again I will shave my head thats it:-) I feel tired sometimes and have hot flushes but its okay. Nails are fine but skin is getting dry so I am using raw shea butter and raw coconut oil it works for me the best. I have a 15 years old teen girl who is demanding and a 5 months old hyperactive puppy who as wellJ I go out 5 times a day for walk and noticed that I always get energy even though many times I have to force myself to go out. I work from home since I started chemo and it is a very good distraction. So I can live more or less my normal life and happy so far with SEs. I think the most important thing is to try being positive and laugh a lot. Its hard sometimes but every single day that passed we did something for being healthy and the light at the end of the tunnel is getting closer with every Taxol!! Keep strong girls!

  • ladyhumps
    ladyhumps Member Posts: 56
    edited April 2016

    Checking in to see how everyone's doing here. Welcome to the newer ladies but sorry any of us has to be here. I see some of you have already had AC. Hopefully, you'll manage this one! Some of you are close to finishing chemo, good luck to all of you as you continue on! I started rads on Wednesday, should finish by mid-May. Then back to work. When I was diagnosed my plan was to continue working during treatment but the further along I got it didn't work out that way. My recovery from surgery was slower than I anticipated, then chemo wore me down pretty quick. Now I wish I could retire! I'm 55 so hopefully I can before too much longer.

    I'm 17 days PFC, the neuropathy seems to be improving. I have had hair growing back for about a month. It's about a 1/4" now, brown with gray in front (same as before) with less hair in front. I'm seeing some eyebrow hairs coming in. Eyelashes are short but thick. Still get some clogged pores. I tire easily, sometimes just feel exhausted. Right hand and ankle are still swollen with joint pain in both hands. Up until about 3 weeks ago I had the prettiest fingernails I've ever had, then seems like overnight peeling nails with dark spots and ridges galore. I kept them painted with a pinkish-tint hardener or regular polish. Only one toenail has a dark spot but it doesn't seem to have changed in size. Still have an occasional bloody tissue when I blow my nose. These are the lingering issues I have. On the SE list I was given I think I hit on everything except temperature, constipation and mouth sores.

    Carry on the fight, ladies!

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited April 2016

    HausFrau, since I didn't have an allergic reaction to my first taxol, they dropped the steroid and Benadryl for the second one. You might ask about that.

    My infusions are on Thursdays. I had a low grade fever, 99.4, on Wednesday night and Thursday night. Then yesterday, it jumped up to 100.8. I felt fine, so my MO said to call back if it went over 101.5. Luckily it was gone this morning.

    I was assigned 3 neupogen shots last week and this week, but if my counts stay good next week, then she said she might drop me down to two. Good, because I do not enjoy giving myself injections

  • Mizzoh
    Mizzoh Member Posts: 17
    edited April 2016

    Hi all! Had my first weekly Taxol/Herceptin on Tuesday, and today is Saturday. I did NOT do A/C first.

    Infusion went fine. Very minimal nausea, hardly enough to count.

    Wednesday I was tired, a bit painy...but I alsohave fibromyalgia (and Hashimoto's, and...)so who knows.

    Thursday I felt like a million dollars, until late evening. I hit the wall.

    Yesterday was AWFUL. Pain, all joints, especially knees, ankles, feet. Freaking awful and I'm used to massive daily pain. Could barely get through work yesterday, today I'm being necessarily lazy and using compression socks.

    Any ideas? Will this be every week?


  • Ddaisy
    Ddaisy Member Posts: 18
    edited April 2016

    Mizzoh my first taxol week was kinda same but doctor said that the first week is the worst as your body doesnt know taxol yet. Since then its way easier even the second week was much easier. Try LGlutamine minimum 20gr daily it helps with bone and muscle pain and also gives energy and boosts the immune system. Tell ur doctor about SEs you had coz they can change premeds too. Some steroids just dont work for everybody. Wish u the best hope ur next ones gonna be easier. Keep strong!! Hugs

  • Mizzoh
    Mizzoh Member Posts: 17
    edited May 2016

    Ddaisy: Thank you for the hope! I'm better today, but am hoping this doesn't happen every week. Thank you for the tips

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited May 2016

    Hey Taxol ladies....hope you are feeling better Mizzoh! I have managed Taxol pretty well....but have done the icing, L-Glutamine and supplements. However just had Taxol #8 Thursday and felt lousy last night and today. I had read that a few of you who have finished had a tough one toward the end. ...only a few more to go so hope this is isolated. Courage and strength for us all!

  • Slapp
    Slapp Member Posts: 15
    edited May 2016

    Thank you everyone for the encouraging words! I am going to get the L-Glutamine this week, and then can someone please tell me more about the icing, and also using dark nail polish? I would like to try everything I possibly can to get through this with the least amount of SE's. I am also going to try acupuncture and see if this helps. I really appreciate this site, so helpful to have everyone here!

    Viktoryak I will be thinking of you this Tuesday, I will be a week behind you. Sending positive vibes your way!

  • Zoziana
    Zoziana Member Posts: 102
    edited May 2016

    Had first Taxol/Herceptin on Friday. Question re: flushing of face:

    The infusion itself went fine, no problems. Felt fine Fri afternoon and night, just tired a little. About 24 hours after the infusion ended, on Saturday afternoon my face flushed bright red across cheeks and nose. I looked like a badly painted circus clown or a very ruddy drunk. I also felt nauseated. Took more Zofran and Benadryl, and within one hour the nose redness disappeared and gradually, over the next 24 hours, the cheek redness subsided. to where just a tiny bit of rosy apple is left on my cheeks. (I'm usually very pale cheeked...) Flushing is a side effect of Taxol that I saw listed. This afternoon and evening I'm very tired and achey a bit, but not too bad, and there is a bit of fingertip and toe tingling. I am taking the B vitamins (as I usually do) and the L-Glutimate.

    Anyone else have this flushing experience? I did email my MO today to let them know.


  • Ddaisy
    Ddaisy Member Posts: 18
    edited May 2016

    Zoziana I had the same red face after the 1st one but since then I dont have it. I think its probably just because your body meets Taxol 1st time but keep an eye on it and defo let your MO knows.

    Positive energy is on their way to you Ladies from the rainy Ireland :)

    Im gonna have my 5th tomorrow


  • Gabby56b
    Gabby56b Member Posts: 32
    edited May 2016

    Done with Taxol, now on to radiation. Last Taxol was April 14. I was terrified going into it - after 4 rounds of AC - did not know how I was going to do it. All in all - it was pretty easy. Had treatments on Thursday - up all night Thursday night due to the steroids. Saturday and Sunday - taste was off - everything felt and tasted slimy. Some bone pain but subsided with advil. Those who are just starting down this path, it goes faster than you think. Those just finishing up - Congratulations - job well done !

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited May 2016

    Gabby......WOOP WOOP.....Congratulations!!!!!!

    Happy

  • Drmurph
    Drmurph Member Posts: 3
    edited May 2016

    Hi , i just finished the last and final round of AC. It is a rough round, no energy extreme nausea ( nothing helps) i go for infusions to get through. Now that I had my last , I am suppose to start weekly Taxol on may 12th. I am petrified. I was told with AC THAT i would be able to work but I could not go in. I thought i would be out for one month for post op recovery of my bilateraly mastectomy instead it turned into more then four months.

    Any advice that anyone cann give me. To stay on top of it. I am the person that gets all the side affects ( i pray I wont with this) . The hait loss no longer bothers me. I wear a wig when i need to. I need to feel like aa human being again . Before getting diagnosed with breast cancer in 12/15 i worked 8o hr/ week in my office. nOw I am lucky if i can work 4hours every 2 weeks. The day I work -i am deathly sick and need the entirre next day to recooperate.

    Any advice??? From anyone???

  • buttaflydiva
    buttaflydiva Member Posts: 10
    edited May 2016

    drmurph-I had a terrible time with AC. I had infusion on Fridays and used sat and sundays to recover. Monday I still felt pretty bad but went to work anyway. im halfway through weekly taxol and Herceptin and have perjeta every 3 weeks, but this is so much easier for me than AC. The worse SE to me is just being so tired all the time. I have no nausea, and very little neuropathy. I wont say I feel great, but since I started I haven't felt bad at all

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited May 2016

    DrMurph...lets celebrate you finishing AC!! It is not fun for anyone so most folks are thrilled when its done. I had a hard time on it also..I worked but that is all I could do barely so you are not alone. ButtaFlyDiva, myself and the some of the other ladies on this forum who went onto Taxol think it is easier and SE's less and better managed overall so you will hopefully feel the same. I like ButtaFlyDiva have no nausea with this or neuropathy...just fatigue and while that is hard.....its manageable and you might even be able to work more through it :) Hope you feel the great support with tips/hints from this weekly Taxol group..which we all need!

    Congrats again..big accomplishment finishing AC!


  • Drmurph
    Drmurph Member Posts: 3
    edited May 2016

    thank you for your help. It is appreciated. i will take it one minute at a time. I am glad you are both through the worst too. It is nice to know there is alot of supoort here on this site. It gives me hope.

    Talk soon

    Dr murph

  • Praline
    Praline Member Posts: 101
    edited May 2016

    ALL DONE WITH CHEMO image!!!!!!

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited May 2016

    Praline....CONGRATULATIONS!!!! So happy to see so many finishing chemo..inspiration for us all :)

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