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Weekly Taxol group

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Comments

  • Gamb
    Gamb Member Posts: 570
    edited December 2019

    Merry Christmas everyone, this last dose dense taxol has kicked my behind, I pray we all have a better new year

  • dogmomrunner
    dogmomrunner Member Posts: 501
    edited December 2019

    dmp- I'll tag onto loiswb and say that during chemo, I didn't have to shave my legs or underarms and facial hair (post menopausal) was gone during and up to about 3 months. Silver lining. :)

    I had 12 weeks of Taxol and Herceptin and was nauseous during. But that was gone about a week after I stopped the Taxol. I had minimal neuropathy and still nothing so far. Everyone is different of course but I hope that your SE are minimal and manageable.

  • dmp1960
    dmp1960 Member Posts: 13
    edited December 2019

    Thanks DogMomRunner! I can't tell you how nice it is that all of you are able to share your experiences with me - makes it not so scary. I'm starting to feel a better about the whole process and am hoping for a great outcome. Happy Holidays and best wishes for a happy, HEALTHY New Year.

  • s3k5
    s3k5 Member Posts: 411
    edited January 2020

    I just want to say that I had weekly Taxol for my bone mets and had some nueropathy in my toes and finger tips. Someone suggested to apply Vicks Vaporub for quick relief and it works! I put it at night times and wear socks so it doesn't get all over my sheets.

  • snaffle53
    snaffle53 Member Posts: 107
    edited January 2020

    Made it to week 9 before we lowered the dose of Taxol by 20% due to neuropathy and severe fatigue. And even at the lowered dose, treatment 10 has near done me in. Nose bleeds, bleeding gums, diarrhea, and neuropathy worse to the point I have pain all the time. Fatigue is worse too even though I could hardly imagine it getting worse.
    My cancer has responded well to chemo. My MO said we might skip the last dose. I’m seriously thinking I may have had my last dose with treatment #10. Has anyone stopped early? I’m terrified of this neuropathy. And fatigue so bad I’m not sure I can accomplish a shower even sitting the whole time. There is still drying off to manage. And I don’t think I have it in me.

    I feel like I have hit a wall. And very concerned about the only 4 to 6 weeks I get before surgery. Please tell me without chemo my energy will start to return.

    Marily

  • Mncteach
    Mncteach Member Posts: 241
    edited January 2020

    Marily—

    I don’t want to lie, but there is light at the end of the tunnel. Energy does not magically appear the minute you stop chemo. I am 8 mo PFC and my energy is ok. I still get more tired than I want but I look back at what I can accomplish now and see the progress. My friend is 2 years PFC and it can still hit her, especially when she has a cold or the like. I definitely do not feel the can’t shower tired and that went away pretty quickly, I just sometimes have to remind myself of what my body has been through! Be kind to yourself, it does get better!! Sending supportive hugs

  • radqueen
    radqueen Member Posts: 310
    edited January 2020

    Greetings to all, Have a question. Has anyone's hair started to grow out while on Taxol? My MO gave me a break between my 4th AC and the start of Taxol ( 2 weeks). and now it seems that my hair is starting to sprout up some. I am day 4 post 2nd Taxol. So far the only SE I have is the fatigue.

    In the time he gave me off my WBC went back to normal and my lymphocytes were back above 1000. I go for my weekly blood test today so will see if there is a drop there was not one last week but that was only #1.

    I have been icing my hands and feet during the infusions, hope this works as the nephropathy sounds like no fun. I haven't had any taste changes yet or mouth sores even with the AC treatments, hope to avoid this. It seems it is more common with the Taxol than the AC. I still make it a point to drink at least 2Lt of water before infusion, and then 8oz every hour post till I go to bed that night, and if I wake up in the night I drink 8oz. Yes it's a lot of trips to the bathroom but the infusion nurse thinks that is what is helping me keep the SE at bay and my blood work so good. She says I have super hero status bone marrow. Lets hope it stays that way.

    I go see the surgeon who did my BMX today just a followup, wants to check out his work I guess. He did a great job between him and the PS you have to look for the scars to know that anything was done. I still have some numbness along the back of one arm but I think it's more from bracialplexus damage that happened during positioning during surg. My surg was over 10hr and they had my arms stretched out for most of it. I read that if they overextend your arms this can happen. Lucky it's only in one arm and the feeling is starting to come back.

    Sending prayers and good thoughts to all going through this.


  • laurencl
    laurencl Member Posts: 203
    edited January 2020

    Hey Radqueen,

    I’m about 6 months out of taxol, my hair started to grow back too during treatment. My Mo told me it would. I also iced and did not ever have neuropathy. The nurses at my center did not believe much in icing, but I did it anyway. I never lost my nails, but they did start to pull away. I kept my nails painted. I wore a wing until about 5 months after taxol, then got my hair colored (my last day of rads). Also, my pre-chemo energy returned around my last 2 (of 12) treatments). Keep it moving warriors




  • radqueen
    radqueen Member Posts: 310
    edited January 2020

    Laurencl,

    Thanks for the info. I almost always keep my nails painted if I don't they get brittle and break way back. I also don't see many people icing at my infusion center either but I will keep doing it. It's nice to know that my energy will start to return toward the end.

    My Surgeon is so pleased with me and his work. He said he could not get over how good I looked and how well my breast had healed. The scars are barely visible. Can not wait to get the revision of the existing scars ( make them even smaller) and the lift. I think that if I had went to any other surgeon that they would not been able to do the skin and nipple sparing MX. The first Surgeon I saw did not even offer this type of surgery to me. I am so glad that I found my current surgeon. He is a Breast Surgeon Oncologist, so all he does is the tatas. He has teamed up with a truly talented plastic surgeon and between the two they are Rock Stars. At least to me.

    Well hubbie wants me to fix him some breakfast this morning. Can not wait to get through this chemo so I can get back to work. I work in a Level 1 Trauma Center and my MO does not want me anywhere near it till chemo is over. I can understand as we get exposed to all sorts of illness from the homeless and IVDA's that come in. With a lowered immune system he said I would catch every bug that came in and would probably wind up hospitalized. So here I am at home avoiding crowds and public places. Thank goodness for Walmart delivery. LOL

    Keep the faith and blessings to all.

  • rlmessy
    rlmessy Member Posts: 97
    edited January 2020

    Hi Everyone,

    I am making my way through this amazing thread - thanks so much for some great information. I am starting weekly taxol and herceptin (kanjiniti) on Thursday and have a couple of questions - I am meeting with my nurse on Tuesday so will ask these then too but just trying to get a feel for what others have done.

    I am scheduled the day before chemo for labs and dr visit. Did you let lab techs draw blood through your port? I am inclined to say no due to increased risk of infection and the risk that a tech won't know how to do it properly even in a cancer center and could cause issues.

    I am limiting blood draws to just my left arm due to cancer being on right side and SN biopsy done on that side. My mom is a 13 year survivor who deals with a pretty serious case of lymphedema so I am erring on the side of extreme caution in that right arm. Anyway, how were blood draws done? Did they follow a start low and move up approach on your arm or just go to the mid-point and always draw from there? After many years of caring for my mom I have been told that a lot of nurses perfer to start IVs low on hand, wrist or forearm because if it fails they can do up the arm to restart but they can't go below original IV. I am wondering if that approach would work for blood draws and help spread out the pokes so I don't end up bruised for the whole 12 weeks.

  • loiswb
    loiswb Member Posts: 86
    edited January 2020

    My blood draws at the cancer center were always done through the port. The nurses were all skilled at doing it and took sterile precautions. I think your avoiding the arm on the cancer side for sticks (and blood pressures etc) is very reasonable. I had my blood work and MO visits the day before treatment also, as I scheduled my chemo on Thursdays and that was my MO day off. Many people do the blood draw, then the visit, then the chemo all in same day Good luck to you!

  • ingerp
    ingerp Member Posts: 1,515
    edited January 2020

    I only did IVs but they tended to be on my lower arm or in my hand. I told them wherever they could find a good vein was fine with me.

  • cbk
    cbk Member Posts: 323
    edited January 2020

    I did not have a port. But all of my blood draws were done on my finger. Honestly I hated that more than my infusion needles.

    Hurt bad. Until I found another angel nurse who warmed my finger with a hot water bottle and minimized the pain. Strange the things that affect you and those that don't.

    If you just had sentinel node biopsy, you can draw blood, take blood pressure etc on that side . If you have lymph node involvement is when there is concern; that is straight from my breast surgeons capable mouth! Check in with your team.

    Wishing you much strength on your journey!

  • martaj
    martaj Member Posts: 307
    edited January 2020

    The best thing I did was have the port put in. Blood draws, Chemo infusions, saved the veins in my hand and arm. Now that I'm facing surgery in 2 weeks port comes out because it was put in on cancer breast, even though I asked to have it put in left side. So it will come out so that radiation can do it's job. I will have 7 more of trial infusions until July and they can use my veins on my left arm. That is if I don't break out in body rash like last time. Then trial med will be discontinued. Had some issues with trial med. Take care all

  • laurencl
    laurencl Member Posts: 203
    edited January 2020

    my infusion center was not that close to me, so I would have my blood drawn at a lab close to me two days before my infusions. Blood was drawn from my arm

  • annie60
    annie60 Member Posts: 296
    edited January 2020

    I have terrible veins so a port was a God sent for me. I always have blood drawn through my port. I finished HP last Tuesday and will keep the port for two years - I have to go every three months for blood draw and MO appointment.

    Annie

  • dvhmouse
    dvhmouse Member Posts: 130
    edited January 2020

    My port was left in following my UMX as it was on the unaffected side. My PS and BS are offended by it because the port was somewhat of a botched job when it was put in and as a result looks awful. It healed badly and has always driven me nuts (itching, swelling, unresolved hematoma)! Because I'm still getting Herceptin every 3 weeks, the MO wants the port left in, but I just can’t stand the irritation anymore and am willing to have my IV in my arm. I had to get permission from the MO to have it removed, but as she just gave permission today, I’m going to make an appointment with the BS to have the port removed ASAP!

    Diane

  • radqueen
    radqueen Member Posts: 310
    edited January 2020

    I have blood drawn weekly and always from my arm. I have really good veins. The phlebotomist at the lab love me, and can't believe I'm a cancer and Chemo pt. My MO gave me a prescription for the EMLA cream, that's the numbing cream for my port, and boy does it work . The secret is to put it on at least 1 1/2 hours before they will use it. I also some times put it on my AC vein when I go get my weekly blood draw. It takes the stick from #7down to a #1 or 2 . Since I only had 3 nodes removed all neg. (Thank You Lord) my surgeon told me I had no restrictions on BP or sticks on the CA side. I did measure my arm before surg and then before I started Chemo just to make sure it was the same size and was showing no signings of Lymphadema. My arm has never gotten any larger so I think I have dogged that bullet.

    If the sticks hurt try to get the EMELA cream it's great.

    Keep up the fight we got this...

  • rlmessy
    rlmessy Member Posts: 97
    edited January 2020

    Well I did my first weekly TH. No issues with the H but the taxol had barely hit by body before the effects hit me...my chest tightened, my heart rate escalated and I had the worst back pain. Nurse said it was a common reaction. The staff acted quickly and for me stabilized. Restarted at half rate for a half hour then went back up to prescribed amount.

    I see the doc on Wednesday for labs and consult.

    Has anyone else had a reaction during treatment?

  • annie60
    annie60 Member Posts: 296
    edited January 2020

    rlmessy - I did. Sounds like the same thing you had. They did the same for me - slow rate and meds. I had to take lorazepam - to stop muscle spasms - before the treatments and the nurses kept it ready during the treatments. I also had a reaction to perjeta. I did get through the 12 sessions, but wish I had stopped earlier Neuropathy in my hands and feet is very painful.

  • rlmessy
    rlmessy Member Posts: 97
    edited February 2020

    Day 4 post taxol, first infusion and I think I see a bit of light. Day 2 was obviously the steroid high and a great day despite the hyper sensitivity during the infusion. Day 3, however, was awful. Pain in my tailbone region and generally feeling like I was having massive menstrual cramps. Totally an emotional basket case, cried at the drop of a hat. Generally basked in a state of depression I have never even thought possible. Managed to get some wacky sleep by taking hydrocodone which barely touched the pain but made me groggy enough to get a few hours of sleep. Took till this afternoon to recover from that hangover.

    I am not sure if doc lets me continue after the reaction I had that I am able to mentally get through this.


  • ByUmom2
    ByUmom2 Member Posts: 36
    edited February 2020
    rlmessy - I hope your next infusion goes better. Taxol should be started slow and then increase infusion rate if tolerated. I hated the not being able to sleep from the steroids. Taxol is known to make you feel extremely emotional and depressed...just being in the situation we find ourselves in is emotional enough, but to have it compounded by chemo is the worst. I had crazy side effects during taxol...hemorrhoids, worsened my varicose veins. Be sure to get rest when you can and drink lots and lots of water!! Just know that you will get through it!
  • rlmessy
    rlmessy Member Posts: 97
    edited February 2020

    Thanks Annie 60 & ByUmom2! I have been reading this thread and see what's common but boy when you are going through it - it is scary as hell!

    Day 5 - whew thank God I am coming back to normal. That was a rough. Today I feel mostly normal - still having some pain issues in my back where I had the spasm on infusion day. I got the ok last night to take some motrin and that helped but I have had 2 bloody noses since last night so I am not sure if I can continue with the motrin. I have a call into my nurse navigator as of 9:30 and then again at 1:30 but still no return call - its not like her so I am not sure what to do. I just keep moving slowly and drinking lots of water.

  • annie60
    annie60 Member Posts: 296
    edited February 2020

    rimessy -Bloody nose is a SE that many of us have experience. I used a little vasoline on a q-tip (per my PCPs instruction) to help with the dryness that caused the bloody nose. It did help but felt weird. Hang in there - you can get through this.

    Annie

  • rlmessy
    rlmessy Member Posts: 97
    edited February 2020

    Well doctor is putting in for Abraxane to see if it will be covered. After meeting with him he feels the combined reaction and back pain leave me in a strange position. He can and is willing to try more pre meds but my reaction was so severe he does not know how they will work. So my option would be to move to Herceptin and Tamoxofin. Or the Abraxane if approved.

    Just did Herceptin this week. Waiting on word from insurance company.

  • Marmotka
    Marmotka Member Posts: 19
    edited February 2020

    Hi everyone, I'm having my first taxol as I'm writing this and wondering what is the weekly dose everyone is getting? For me it's 138mg.

    I'm also getting the maximum dose of decadron in my IV, 20 mg. I hear many people can't sleep well? I used to get 12mg when I was doing AC and actually slept around 12 hours after every infusion and the days following. I'm wondering if it's a completely atypical reaction. I guess I'm a bit apprehensive of what to expect....

    Thanks in advance!

  • ingerp
    ingerp Member Posts: 1,515
    edited February 2020

    I didn’t have many sleep issues with the steroid, but I took Zofran for a few days each time—not because I was nauseated but because it makes you drowsy.

    My understanding is the chemo dose is related to surface area, which they calculate through your height and weight. You will probably be measured before every infusion.

  • loiswb
    loiswb Member Posts: 86
    edited February 2020

    Yes, I believe the dose is calculated based on height and weight. Then if you have problems (side effects/reaction) they will lower it a certain % the next time....The time of day you get your taxol may also effect whether your sleep is disrupted that night. Good luck!!

  • Cat029
    Cat029 Member Posts: 24
    edited February 2020

    FINAL chemo (Taxol) was today . Next is trip to Mayo for imaging and tests to see how I responded and if I'll qualify for a short term clinical trial. Either way, my dmx is scheduled at Mayo in MN for 3/24x I'll spend a few days there and then fly home for a few daya to be with my kids before going back for follow ups. Any suggestions on questions for my BS or PS during my meetings with them or tips for flying back home after the durgeries?

  • moth
    moth Member Posts: 3,293
    edited March 2020

    hi everyone, I'm back on the weekly taxol.

    Last time for stage 1, I had 12 weeklies. Now as a stage 4, it's indefinite - until we discover it's not working, I guess.

    I'm in a clinical trial so I'm actually not getting it quite every week. It's days 1, 8, 15 of each 28 day cycle. So 3 weeks on, 1 week off. I'm also getting immunotherapy IV, plus I also have either placebo or an oral chemo. Just started everything last thurs.

    I iced hands and feet last time starting from about week 6 because I started developing neuropathy. It prevented it from worsening and mine totally reversed within a couple months. This time, facing potentially months of taxol I'm icing right from the start.

    I forgot though - are we supposed to put ice on a few mins before the taxol starts running? How many if so?

    Also, are we still doing B6 and l-glutamine? What dosage is recommended?

    I swear I walked out of stage 1 treatment and promptly made every effort to forget everything. Now sadly I need that info again :(

    Tia for any info!



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