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Weekly Taxol group

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Comments

  • cris8325
    cris8325 Member Posts: 28
    edited October 2016

    I am so happy for you lmkopy2. Enjoy your much needed break! :)

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited October 2016

    thank you KQhill💕 Cris8325 you're right behind me...the end of your treatment is on the horizon 💕

  • KQHill
    KQHill Member Posts: 28
    edited October 2016

    I'll take prayers, positive thoughts, and voodoo dances. Thursday is my second-to-the-last Taxol and the infusion center is on the "wrong" side of the street which means they have to evacuate from this hurricane. Calling tomorrow to find out if they're going to close or stay open or if I can get chemo across the street ("right side") instead. AARRGGGHHHH!

  • cris8325
    cris8325 Member Posts: 28
    edited October 2016

    Finished taxol/herceptin #11 today. One more taxol for me! Seems to be going faster as it goes on. Keep going you guys. :)

  • roofcat59
    roofcat59 Member Posts: 33
    edited October 2016

    Hey chris8325: Round #11 done on Wednesday for me too! I am looking forward to next week. My sister is coming from Boston for my last round. My friend from Rochester was here today for round #11 and brought me a Super Girl costume complete with a red, white and blue wig - Oh Lord :). I promised her I would wear it when I ring the bell and my sister would take pictures to document. To everyone on the Taxol train, you can do it - One.Week.At.A.Time.

    KQHill: Hope Hurricane Matthew doesn't mess up round #11 for you. Will be thinking of and praying for everyone in its path up the East Coast. Stay safe and good luck!

    Imkopy2: Congratulations on completing all 12 Taxol rounds - hooray! I am wishing you a good radiation experience with hopefully few skin or other complications. Thanks for the moral support! I'll be looking for your continued discussion board contributions.

    MLMSC: Hope your skin rash is resolving itself - does not sound like any fun. Taxol has aggravated the rosacea around my nose and on my chin. If you live in a sunny, warm geographical area, sunscreen is a must - preferably one that is mineral based with no avobenzone, etc. Alba Botanica "Very Emollient Mineral Sunscreen" worked well for me this summer. Where I live, warm and sunny are two adjectives that are now pretty much off the table ;).

    I had a new SE between rounds #10 and 11. I was pretty sure I had a superficial thrombophlebitis in my left calf - my husband brought to this my attention this past Sunday eve. Looks like someone clobbered me with a golf club. MO says her clinical impression is that I had a coincidental Baker's cyst rupture. Maybe . . . . I know this sounds presumptuous, but from what I've read and from what it felt like for me and what it looks like now, I don't especially agree with her. Had no problem or pain in my knee joint at all that I recall, thought I had a muscle cramp on Thursday (day after infusion) and could feel a localized pain and knot-like lump in the "belly" of my calf muscle (no where near the back of my knee). "Rolled it out" on a rubber ball til it felt better and never thought about it further til my husband saw a giant, ugly bruise on Sunday. Anyway, my MO (and me) will be watching this area carefully, and she'll order a Doppler if she feels it necessary. I tell you, it's always something.

    Wishing everyone restful sleep, pleasant dreams, and minimal side effects. (( ♥ ))

  • Cathy148
    Cathy148 Member Posts: 5
    edited October 2016

    Well, I had my first Taxol a week ago today and, to be honest, I'm not looking forward to my 2nd today!  The infusion went well, which is a good thing since so many have issues.  I slept through most of it from the Benadryl!  Friday I felt better than I've felt since before the AC.  However, Saturday I was hit with flu-like symptoms and sharp shooting pains throughout my body, especially in the pelvic area.  I guess I wasn't expecting this since so many of you said the Taxol was better than AC.  The "flu"  and shooting pains were pretty much gone on Monday and I was left with fatigue which has continued throughout the week.  I'm just hoping these SE's don't persist for the next 11 weeks!  I'm trying to stay strong (thanks to all of you!).  I'll keep you posted.


  • roofcat59
    roofcat59 Member Posts: 33
    edited October 2016

    Cathy148: Everyone has a somewhat different reaction profile to the same chemo drug. The fact that you felt pretty good on Friday is typical because you still have a good portion of the pre-med steroids left in your system. I get my infusions on Wednesdays, and Thursdays I can feel pretty good and be super productive. The down side to the steroids for me is not being able to sleep well until they are totally out of my system.

    Friday and Saturday (Days 2 and 3 post-infusion) I feel pretty down (sometime physically and emotionally), fatigued, and flu/hangover-like due to the steroid crash , but that turns around by Sunday at the latest, so I feel pretty normal Sunday-Tuesday until they hit me again on Wednesday :-/. Have not experienced any of the severe body or bone aches that you have described from Taxol but I do have a big problem with leg muscle cramps, usually from Saturday onward. I have found you gotta keep moving and stretching - no long periods at the computer or standing in the kitchen. I have found this to be my most painful symptom.

    The most bothersome and mostly annoying SE for me has been the neuropathy in my feet, at first, and then in my hands, but I am lucky that it is intermittent and not too severe, so has not interfered with my daily life nor has it caused them to reduce the Taxol dose.

    Although your SE's may change from week to week, just try to take it a day at a time and try not to get discouraged (easier said than done ;-). You CAN do this!!, and as the old cliche goes, "This too shall pass."

    All the best, roofcat (( ♥ ))

  • KQHill
    KQHill Member Posts: 28
    edited October 2016

    Well, Hurricane Matthew did cause the cancellation of Taxol #11 BUT... I posted this in our travel agency Facebook group:

    THIS is why my chemo was cancelled today. So I could be here to cheer you on, consolidate info, help those whose owners aren't helping them at all, share what I find through my network, and offer up funny memes.

    There was a plan in place, I just didn't know it.

    We're going to call this a blessing-in-disguise. I can't imagine working like I did today at the infusion center or taking time out for a nap like I usually do. My agents ROCK but they still need me and I need to be needed too.

  • vlh
    vlh Member Posts: 773
    edited October 2016

    Hi, Ladies,

    I'm just starting AC chemo Tuesday so a couple of months away from weekly Taxol treatments, but have a question. For those of you doing AC+T, did you only ice for the Taxol portion? I noticed nail changes mentioned as a Cytoxan SE.

    With having to pay my catastrophic out-of-pocket in July & again in January 2017, the Elasto Gel mittens & slippers aren't in the budget. Did you take Ace bandages to hold the ice on your feet? I just laundered my oven mitts for my hands. Thank you!

    Wishing you a pleasant weekend free of side effects,

    Lyn

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited October 2016

    VLH-first off I'm sorry you have to go through this but I will say you are in the best place for support. All of us have been thru chemo in one form or fashion and no one will understand what you are going thru unless they have been there. Please feel free to reach out to me or any of us if you need to, one thing I can promise you is that you will get thru it. With that being said I did AC/T treatment, AC 4 rounds ( every 14 days) and then 12 weekly of taxol. Remember everyone is different in their tolerance and the SE vary greatly. Here's the breakdown of what I experienced.

    AC- when adiramyacin was administered I had to drink ice cold water so mouth sores didn't develop, the nurse pushed it through a syringe and I was finished with that in approximately 15 minutes. I typically drank about 2 bottles of water in that time and obviously had to use the bathroom after. Needless to say it was bright red. Cytoxan- was an IV and took about 2 hours. I didn't ice down my hands or anything during these treatments. The major SE was fatigue on this combination, be sure to take the steroids as recommended which help with nausea. Also, have your anti nausea meds handy (Zofran or compazine) personally I found eating small meals ever couple of hours helped during this round of chemo. Hair loss happens approximately 14-20 days in. When I was o. This round of chemo my first week, I was tired around days 8-10 I felt better but not 100%, by the time I felt good it was time for the next round. Spicy and acidic food was my nemesis and I constantly rinsed my mouth everytime I ate something because my mouth would get irritated. Biotene is helpful as is warm salt water. I had a couple of nails get slightly dark no biggie though.

    Taxol- Totally different I felt beat up on AC this is not the case while on taxol. My treatment day was Monday...I had a steroid buzz Sunday-Tuesday by Wednesday night I crashed out, by Thursday or Friday I felt pretty good for the weekend. As treatment progressed I be more tired on my tired days but then recoup. Mouth sores weren't an issue but I still watched spicy food which I normally love. No neulasta shots for this round. Hair began to grow back 1/2 way through, eyelashes and eyebrows sparce by end, no nail issues. I was fortunate to be tolerant of treatment, I even gave up alcohol while on treatment. Since I was doing well I didn't want to mess things up lol! I did develop. Neuropathy in my hands and feet, vitamin B12 or B6 helps with that



  • soareagle1962
    soareagle1962 Member Posts: 9
    edited October 2016

    Hello!

    I want to share great news.  I recently finished chemo (AC/Taxol) and received the results today from my follow up MRI.  Here is the recap from the report.  I had multi-centric tumors (4) located in 2 separate quadrants of my breast with one abating my chest wall.  All are gone after chemo.  The surgeon stated this is the best outcome possible; so there is hope that going through chemo "can" result in a pathologic complete response.  This will of course be confirmed by the pathology report after surgery.  Surgery (mastectomy left breast) is schedule for 11/7/16. 

    LEFT BREAST      (BI-RADS Category 6).
    - No residual suspicious mass or abnormal enhancement in the left
    breast in this patient with multicentric biopsy-proven
    malignancy in the posterior 10:00 and posterior 5:00 left breast.
    - No left axillary lymph nodes with focal cortical bulge or hilar
    replacement.

    My best to everyone and hang on to hope that chemo is working.

    S

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited October 2016

    cathy148- ask about taking Claritin, I heard that helps with bone pain during taxol, I can't take it. Also, walking if you can do it helps, I had some nine aches and walking around the block helped out.

    KQHill- hope you are safe and all is well💕

    Here's to all of you beautiful warriors out there...we are strength in numbers🙏🏼💪🏼

  • KQHill
    KQHill Member Posts: 28
    edited October 2016

    VLH, I never iced and I have no nail issues other than a bit of lifting at the very tips of my fingernails... and I tend to abuse them and use them as tools. I have used OPI Nail Envy pretty regularly. Not as directed, but almost always some on my nails. I did suck on ice during the actual AC infusion itself but that's it.

    My chemo status: AC done, 10 of 12 Taxol treatments done.

    As for the hurricane, we're hanging in there! The WAY outer bands are just getting close now.

  • vlh
    vlh Member Posts: 773
    edited October 2016

    Imkopy2, thank you for all the information regarding your experience. I'll be having the same drug protocol as yours.

    KQHill, I'm glad you didn't have any serious nail issues.

    Soareagle, great news!

    Lyn

  • Cathy148
    Cathy148 Member Posts: 5
    edited October 2016

    Thank you roofcat59 for your suggestions.  I had my second Taxol on Thursday and I haven't had any of the SE's I had last time.  No flu-like symptoms or shooing sharp pains :)  I'm so happy about this, as you can imagine.  I'm a little tired but not too bad.  I'm so happy about this for sure!  Thank you all for your support.

    Imkopy2, I did use Claritin for the Neulasta but I didn't know it worked for Taxol.  If the bone pain returns, I'll give it a try.  Thank you.

  • cris8325
    cris8325 Member Posts: 28
    edited October 2016

    Last weekly taxol finished today. I will get Herceptin every three weeks now to complete a year. Six week break for me. Woo hoo!

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited October 2016

    woo hoo cris8325...congrats!

  • Natalie68
    Natalie68 Member Posts: 4
    edited October 2016

    Well round 6 (2nd of paklitaxol) didn't go well and lucky if I got 15 of the 150 MLS! Had a pretty nasty allergic reaction (I sure was freakin out 😳). For anyone that know my major fear - my throat closing over found my gag reflex! 😱😰. That was also bad!

    Oh yeah after that settled down and I had quite a few meds on board, had another go! Nope not as bad but pretty uncomfortable.

    Apparently all that wasn't enough and we are going to persevere to get the increased 30% of safety to prevent my lymph node cancer metastasising so with big doses of anti inflammatories and steroids before the next dose. I assume we have just 10 to go if my body takes it!

    So I'm sitting here like a sausage again with more drugs on board than I've taken my entire life! 😳. Fuck cancer.


    Next week will be scary to go to!

  • vlh
    vlh Member Posts: 773
    edited October 2016

    So scary, Natalie!

    Lyn

  • delaneyh1
    delaneyh1 Member Posts: 1
    edited October 2016

    Hi- This is my first post on this site, I'm doing taxol and AC, every 2 weeks for triple negative breast cancer. On my third infusion (IV in arm) the taxol leaked into my arm tissue. It's been almost three weeks and there is still inflammation and redness, some pain. Has anyone had this happen? How long does it take to clear up?

    I have had a port put in since for the rest of the treatments. The arm isn't really bad, but still, not healed. Thx

  • soareagle1962
    soareagle1962 Member Posts: 9
    edited October 2016

    Hi delaneyh1, I am sorry about the leakage into your arm. I had an infection in my port incision and they did an AC infusion into my arm the beginning of June and the vain is still slightly red and hard; I was told it may take months to heal. It doesn't hurt anymore

  • roofcat59
    roofcat59 Member Posts: 33
    edited October 2016

    Hello everyone - hope you are all doing relatively well.

    soareagle: Such fantastic news about the results of your chemo. It surely is gratifying to get a complete response in exchange for the side effects of your chemo treatments. Good luck with your surgery - hope all goes well for you.

    Cathy148: So glad you had your 2nd taxol round with none of the SE's like the 1st.

    cris8325: Hooray for finishing Taxol and enjoy that 6 week break!! Good luck with the rest of herceptin. We are finished at almost the exact same time. I start my every 3rd week herceptin in 3 weeks. So happy to have a break as well.

    Natalie68: Got your private message reply. I will be thinking of you next week - let me know what your MO says. We have to be our own advocates in these battles, that's for sure.

    delaneyh1: Welcome to the discussion board! Sorry about the IV infiltration incident. I had a port put in before any chemo infusions started since I have horrible veins. Other than the access nurses having to fool around with the port several times to get a blood return, the port has saved me a lot of pain.

    My best news for this post is that I completed 12 of 12 taxol/herceptin infusions yesterday and I am DONE with this nonsense for 3 whole weeks until my every 3 week herceptin begins. Nov 3rd I go to Radiation/Oncology for my simulation session, after which I start 30 radiation treatments with a 7th week of "boost" to the tumor bed.

    But, I completed my ride on the Taxol train. My sister was there to take pics of me in my Super Girl costume (supplied by my good friend and roommate from grad school days) ringing the bell on my way out. The other picture is of my oncology nurse Jen for my last day. She is a "traveler" and does a terrific job, considering she has to learn new institutional protocols every 6 months or so. I had a great experience with the nursing staff at my cancer center - very professional and caring.

    imageimage

    Thanks to all of your for your support along the way. It's so nice to be able to share with others in similar situations. I'll be checking back now and then to see how everyone's doing and joining up on the Fall/Winter Rads discussion. Good luck to all of you where ever you are in your taxol treatments. We will whip this disease in the end, I'm sure of it.

  • Imkopy2
    Imkopy2 Member Posts: 214
    edited October 2016

    yay roofcat... love the costume! Enjoy the our break...praying for all of you on the chemo train, you will get thru it🙏🏼💕

  • Kattis894
    Kattis894 Member Posts: 150
    edited October 2016

    I will have my third taxol treatment of nine, before operation, tomorrow. I am getting taxol weekly.

    So far, I have had severe diarrheas and a runny nose, but luckily nothing else. I have received medication for it and it helps. So every time I have to go out I have to prepare myself mentally and make sure I am taking the medication so no accidents will happen. For me, this illness has become very isolating since I prefer to be at home close to a bathroom..:) I have only told about my diagnos to a few people since there is so much stigma around BC. I just can´t take the "pity party" right now. So I am so far keeping it a secret for instance for people at work. I use to travel a lot for work, so work is totally out of the question anyway..I even made up a story that I was spending the winter in LA while I am in treatment overseas in Sweden...needless to say I am beyond frighten.

  • Germangirl16
    Germangirl16 Member Posts: 18
    edited October 2016

    Hi everyone! Completed #2 taxol/herceptin. Only got half of my steroid dose, so hoping that will help diminish some se's from last week...my 3 I's itching, irritable, and insomnia. Already getting concerned about anemia, as rbc's, hgb, and hct have been falling steadily for the past 3 weeks. I take iron, and eat plenty of iron rich foods, but just keeps dropping. Any suggestions to help, and at what level do they usually give epogen?

  • Natalie68
    Natalie68 Member Posts: 4
    edited October 2016

    hi all, looks like I'm out of weekly taxol! Unlike you German girl we doubled the steroids and the antihistamines and this morning still saw me manage 7mls before the dance of a 1000 knives to my spine began and I put on a floor show for the infusion centre! This time I picked it early, they turned it off quicker and it travelled to my chest but didn't hit my throat, or god forbid anything higher.

    Looks like they will try a different taxol docytaxol which appears to be a 3 weekly one. Fingers crossed I can take this one!

  • roofcat59
    roofcat59 Member Posts: 33
    edited October 2016

    So sorry Natalie, but I'm glad you identified the reaction EARLY. Let's hope docetaxel is better tolerated by you - I have all my fingers and toes crossed for you!

    Wendy (roofcat)

  • Maneyak
    Maneyak Member Posts: 1
    edited October 2016

    Thank you for starting this group. I just completed A/C treatment and starting weekly Taxol next week. Nervous as to SE and if they are as bad as A/C. Doesn't seem so. Fatigue my biggest issue. How is fatigue on taxol compared to A/C?

  • nayda985
    nayda985 Member Posts: 270
    edited October 2016

    Hi all😊

    I also completed AC last Friday.....Super nervous about doing Taxol ever week for 12 weeks..my MO claims Taxol is milder..... In your experience would you agree with that????

  • moderators
    moderators Posts: 8,643
    edited October 2016

    Hi Maneyak,

    Sorry your circumstances had to bring you here but we want to send you a warm welcome to the BCO community.

    We hope you find a wealth of information and support while you're here.

    Keep us updated on how your treatment goes,

    Sending love and hugs Heart

    The Mods.

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