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Weekly Taxol group

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Comments

  • Deaconlady
    Deaconlady Member Posts: 86
    edited May 2016

    YAY Praline, congratulations!!!!

  • ladyhumps
    ladyhumps Member Posts: 56
    edited May 2016

    Yee-haw!! Congrats Praline!!

  • Zoziana
    Zoziana Member Posts: 102
    edited May 2016

    I hope you did ring the bell, Praline!


  • Ddaisy
    Ddaisy Member Posts: 18
    edited May 2016

    huuuge congrats Praline!!!!! Well done u inspire all of us here :)

  • kymberly
    kymberly Member Posts: 15
    edited May 2016

    YAY!!! Praline - So happy for you! Ring that bell!!!

  • kymberly
    kymberly Member Posts: 15
    edited May 2016

    Going for #11 this Friday! 2 more and done. I am lucky to have felt pretty good this whole time but it seems to be catching up to me these days. Just so tired and weak all the time. Swept the floor the other day and was out of breath like I ran a marathon. I have 1 - 2 days a week where I rest off and on all day and just can't seem to get anything done. I am not a lay around person so this is really hard for me. Especially when you rest and it doesn't seem to do any good - your still tired when you get up! Powering through the next two weeks and then recuperation time!! I get a month off before radiation and and I looking forward to that!!

  • Cancerpickedthewrongone
    Cancerpickedthewrongone Member Posts: 7
    edited May 2016

    Praline you look GREAT! Congratulations!! 🎉

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    HI Guys, I just finished my first weekly Taxol on Tuesday. and 1.5hrs of first Herceptin. I don't think I have any se. The only thing I woke up at 3am ( Thats why I online now) sweaty.

    But I had similar before chemo..a 3am wake ups because of anxiety...

    I took xanax an hr before i started chemo since i was so crazy worried and then benadrly as premed it all made me so sleepy and a bit in slow motion. Since i did cold caps i couldn't sleep during injection, because every 15-20 min my husband changed caps....I did Arctic cold caps . Started at 2pm during premed and continued till 9pm. Such a pain in a butt. Just hope it will work.was good distraction.

    Nurses at MSK are s nice and very understanding to my cold caps...but they all were asking if we made them ourselves lol since they used to pingin caps.

    I am 1 chemo. down, 11 more to go.....hope no se will develop in the next few days....

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

    Congrats Praline! So Happy for you! You look great too!!!

    For those of you just stating treatment please get an emla cream prescription. It is amazing to deaden the skin over the port so there's no pain when it's accessed. Just be sure to use a generous glob and cover it with handiwrap an hour before going in.

    I just finished round 4 of 12 weekly Taxol/Herceptin treatments. My only SE's have been stomach cramps, constipation, diarrhea, hair thinning, flushing and some tiredness. It really has not been bad. Plain old pepto bismal has managed the stomach cramps/diarrhea very well.

    To hopefully prevent neuropathy I take 30g of the l-glutamine (10g 3times a day) 100mgB6, 1000mcg B12 as well as icing my feet and hands. So far no neuropathy at all. For bone/joint pain prevention i take claritin. For the flushing- benedryl. If I do begin getting neuropathy symptoms i am going to add alpha lipoic acid and l-carnitine to my plan. Sucking on ice during the taxol infusion is supposed to prevent the mouth sores and i have been doing that and no sores so far. It's also recommended to drink 3 to 4 quarts of water after the treatment and for the next 2 days to flush chemo on out and minimize SE's. So that's everything I am doing for my 12 weeks of treatments. Working good so far ;)

  • blamoms
    blamoms Member Posts: 86
    edited May 2016

    congrats Praline on finishing. I have done the dark nail polish and surprisingly my nails have grown. I did notice 2 dark spots on 2 nails but so far I have not had any neuropathy. I'm not taking any vitamins. I always feel tired but I'm used to it. I have weekly taxol on Fridays and I never sleep well on Friday nights due to e steroids but so far this has been much easier then the AC

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Hi ladies, day 2 after chemo and can't sleep again:( other then flashing face and sleepless nights I feel good. I keep reading different postings and I noticed one of the ladies talking about big weight gain due to steroids. Anyone else did?Do we get steroids with every chemo? Is weekly Taxol steroids lower dose? I am always fitted and planning to go back to mild exercising maybe today. How do you prevent steroid weight gain? Or it doesn't always happen? I am so terrified by it.

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    ThePrincess, I checked elastegel gloves and boots you recommended. Do you freeze them once and it's cold enough through whole treatment Or should it be rotated as with cold caps? I did only 1 Taxol treatment so far and used ice to ice my nails and toenails (recommendation of my MO) . I also used cold caps elastegel through treatment and it is really tough and cold!

  • Maya15
    Maya15 Member Posts: 112
    edited May 2016

    Hi Viktoryak, I didn't gain weight with steroids, probably because I mainly had them with AC chemo and the chemo itself affected my taste and appetite.

    For Taxol, every hospital seems to have different protocols. At mine, we get a higher dose of steroids for the first weekly Taxol, if no reaction to infusion they cut it in half the second week, if you're still fine they eliminate them altogether. I have one chemo left and haven't had steroids since week 2. If your hospital doesn't do the same, you can always ask your MO to cut down or eliminate the steroids.

  • brandford37
    brandford37 Member Posts: 30
    edited May 2016

    Hello Maya I'm from New York Queens where in New York your from and where you get your treatment done, going to get mines treatment at Jamaica Hospital but I wanna check different cancers center

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    So, the steroid gain is due to excess of appetite or it is regardless that will be weight gain? I just pulled out myself from the bed and ready for jugg or walk in a park. Couldn't sleep at night again since 2am. Took anti-anxiety pill at 10 am that made me finally fall asleep and slept till 1. Crazy.

  • Maya15
    Maya15 Member Posts: 112
    edited May 2016

    Hi Brandford, I go to NYU in Manhattan, so far I'm happy with them, they have everything in the same building: scanning, doctors, chemo, radiation, etc and the doctors all work with each other.

  • Deaconlady
    Deaconlady Member Posts: 86
    edited May 2016

    #12 was done this morning! Some sweet friends from work showed up and surprised me and got to see me ring the bell! There were 6 of them who gave me little things anonymously during chemo, cards, gift cards, inspirational books with bible verses, flowers, etc... Three came and we went to lunch afterwards. None of my family were able to make it, so this was nice. I must apologize ahead of time for the closed eyes! LOL

    All of my nurses were able to see it as well. I feel so blessed to have come through so well. Onwards to radiation!


    image

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited May 2016

    Drmurph and Mizzoh- Yes, I agree with DFWFLYGIRL, and Buttaflydiva and Ddaisy... do-able. I just had #11 of 12 today. Besides the bloody, scabby nose, breakouts and itchy rash on elbows, I'm great! I do "hit the wall" occasionally, but I think it got easier every week. Hit the wall HARD after #10...it was odd, I actually had to rest my head on my window at a stoplight!

    • Zoziana- I still do get flushed the day after infusion. I think I just got used to it.

    Keep the faith Ladies!💕

  • Nolagirl1126
    Nolagirl1126 Member Posts: 178
    edited May 2016

    ...and Deaconlady...CONGRATS AGAIN! 🎉🎉🎉

    (Got to you on the Fab Febs page 1st for your congrats😉

  • DFWFLYGIRL
    DFWFLYGIRL Member Posts: 42
    edited May 2016

    Deaconlady.....image

  • LoveMyVizsla
    LoveMyVizsla Member Posts: 526
    edited May 2016

    Victoryak, I haven't had steroids since week one of taxol. Ask them to drop it.

    I had taxol #3 today. I was fine for week one. Last week, I came home and had an episode of diarrhea. Same thing today. Does this happen to anyone else? I hope it isn't the new norm.

  • Zoziana
    Zoziana Member Posts: 102
    edited May 2016

    Deacon Lady- So happy for you! It's great your friends were there for support.

    Nolagirl112- Thanks for that info re: flushing. I don't mind so much when I know it is just a standard side effect. My MO said it may be from steroids, and the massive heartburn I have been suffering she thinks may also be from that, so this week we are going to try skipping the steroid infusion (just benadryl and the taxol and herception) and we will see if it happens. It can be from taxol, apparently, too. I really did look like a very drunk peasant.....

    I'm going to try intermediate level icing for my fingers and toes this week, as I did have mild tingling and some mild pain last week on infusion #1. My MO recommended frozen peas, but instead I am doing velcro cold packs (like to wrap around a sprained ankle.) I can strap them on and have a number of refills to switch out tp keep them cold . I figure this will be better than nothing. I didn't cold cap--though I am not looking forward to hair loss--because my MO is not a huge fan but mostly because I thought it would be stressful and pre-cancer I already had extraordinary stress in my live (a 22 year old chronically seriously ill child who has periodic major medical criseses), and a difficult career from which I was in the process of transitioning. I hope the packs will help with neuropathy. Sort of now wished I'd tried to save my hair, but also glad I don't have the hassle.

    So glad you ladies are all here to help with info and to support! Thank you ALL!

  • viktoryak
    viktoryak Member Posts: 238
    edited May 2016

    Hi Ladies, It is my day 3 after first Taxol /hereceptin dose. I was fine for 2 days. Just couldn't sleep for 2 nights. I even went outside yesterday run 2 miles and walked 2 miles back to my car. Only 380 Cal lost but I was very proud of myself. In the evening i started having pains in a lower part of my stomach , generating inside toward the rear end, uterus and sides. Mostly concentrated toward rear end.. It is like inside all around. I am suppose to get my period tomorrow but usually pre period pain is not the same. I wonder if anyone had similar symptoms? Hope it is only related to my period starting soon.Sorry girls, for private details.

    I am planning to call my dr. later on to check on it and will take Taylonol. ..

    We have a birthday party to attend today that I was so much looking forward, I hope i will be ok by the evening and this will not stop me from going.

    Also, ladies for icing. I am at MSKCH in NY they gave me plastic begs of ice . I was holding those begs to my nails. As for toenails i had socks on but the beg with ice on the top of socks.

    Plus i had cold caps on and it was way to much cold. I didn't hold cold all the time on my hands and toes. I was on /off.

  • Ddaisy
    Ddaisy Member Posts: 18
    edited May 2016

    Deaconlady:-)

    image


  • Zoziana
    Zoziana Member Posts: 102
    edited May 2016

    Victoryak- I had very similar pains at about the same time as you, and I am post-menopausal. Herceptin itself causes lots of bone and joint and general "flu" pains-and days 3-5 are typically the worse symtpom days for the Herceptin.

    Thanks for the info for icing. I'm going to try my best on fingers and toes and we shall see, but as for hair, I just order some new scarcf-hat, fake hair pony tail baseball caps, another halo, and have a fancy wig on reserve for when I really need to look good professionally or socially. I really can't take cold, or more stress even during chemo...so I am embracing this as an opportunity to swim laps for months without having to "do" my hair, seeing (eventually) what I look like with a super short haircut (which I haven't had since 1995! when I was 35), and seeing if my hair comes in a different color (I color it so much now that any color will be interesting, and I know I can change any color or texture that I don't like--my stylist/friend of 26 years is a miracle worker!) We shall see!

    Off to chemo infusion #2--Numb--I am using no steroids in this infusion as Dr thinks they caused my horrid indigestion this past week. Dr for me is using other antinausea meds and more benadryl. From my daughter's experience with steroids for autoimmune disease, she doesn't need to taper off if it has been just a few days--maybe 3 at most--of less than 10 ng of prednisone, but different steroids are diffferent. There can't be harm in tapering, but there can be harm in not tapering when you should, from what I understand. But I would absolutely check with your doctor--she/he may have reasons they want you using the drugs in this manner. Let us know. After all steroids, my daughter definitely experiences a total energy crash, whether tapered or not. They are terrible for you, but people generally feel great on them--mainly, they give you tons of energy.

    Cody MX- Thanks for sharing. I feel the same way--no loss if a toxic person is no longer there. It's like suddenly I see people clearly. And some other people I never expected to step up have really come through for me in positive ways. I am embracing it all and "going with the flow". I am banning negativity from my existence. This doesn't mean bad things don't happen or I don't see or experience them, but it is all how i react to them. I practice by watching television discussion the American political election season...and forcing myself to watch segments with TV pundits advocating positions or a candidate who I abhor. If I can handle that with calm, find something positive in it (not in the candidate but in what, for example, such a candidacy might teach our citizens about what they need to do in a democracy, etc.), then I can handle anything. To be frank, I can usually stomach something like that (with grace) for about 7 minutes. But it is like a mental exercise for me! And then I go to my garden and look at my roses, or pet my lovely dogs. :)

    Happy Friday all!

  • HausFrauMi
    HausFrauMi Member Posts: 113
    edited May 2016

    Home from #4... Called my chemo nurse yesterday about the itchy eyelids. She decided I should take additional dexamethasone 12 hrs before and 6 hrs so 4am!! Hahahaha I don't think my chemo pre med has a ton of steroids because I have yet to not sleep at night after chemo. Nurse said I won't sleep for the next 24 hrs but I feel a bit sleepy right now.

    Sunday and Monday I had a low grade temp and the aches that go along with it. Week before it was only Monday. Can't wait to see what is in store this week. Bloody tissues when I blow so nurse said to try saline nasal spray throughout the day. But no nose bleeds. Over night I get clots that block my breathing. FUN

    Fingers are swollen--- but I haven't really gained weight. Won't be wearing my wedding rings for a while. :( owie

    Congrats to the finishers!!!

  • blamoms
    blamoms Member Posts: 86
    edited May 2016

    I had taxol #4 today. Yesterday when they tried to retrieved blood they couldn't get anything so had to try some suction tube and got blood. The nurse said to mention it today at chemo they tried to get blood nothing. So they gave me a blood thinner they think it's a clot at the end of the PICC line. They wanted to dissolve it. Waited 30 mins they tried again and got blood. Has anyone have this before should I be worried I googles it which was a big mistake. I'm going to put a call into the nurse and see what she says. Of course my oncologist is On vacation this week lol

  • rodeogirl
    rodeogirl Member Posts: 10
    edited May 2016

    i am on abraxane- same as taxol- can anyone tell me what is the average weekly dose for these drugs and do side effects get easier to handle or do they get worse- i had first dose and have been very tired- short of breath- heart working hard- head and ear/sinus pressure- thankyou :)

  • rodeogirl
    rodeogirl Member Posts: 10
    edited May 2016

    wow- i a so amazed when i read through how people have no reactions- jog- go to work etc- i have a terrible time- been to hospital every time- nausea meds dont work- bloods never come back in time- head pressure- cant breath etc :( my tounge even went black on ac- i only had two doses had to stop - now on taxodere :)

  • ladyhumps
    ladyhumps Member Posts: 56
    edited May 2016

    blamoms This happened to me with my port once. The nurse flushed it but then couldn't get a good flow for blood draws. She tried flushing it again but then it wouldn't flush. Totally shut off. She said proteins could build up on the end where it goes into the artery. She said it makes a little flap that opens when they flush it but then when they try to draw blood it shuts. She used a clot buster drug, waited 30 minutes, then got blood. Haven't had any trouble since. This was probably 5 treatments back. I hope this doesn't happen to you again.

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