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Weekly Taxol group

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Comments

  • erin_t
    erin_t Member Posts: 31
    edited May 2019

    Katie-- the friend is a currently practicing oncologist who has seen my path report and is familiar with my case. I've seen him in his office and will see him again this week. I probably made it sound more casual then it is.



  • erin_t
    erin_t Member Posts: 31
    edited May 2019

    Maybe I'll do the reduced dose. Might be a good compromise.

  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 120
    edited May 2019

    Erin,

    FWIW, I had a terrible time with Taxol. Didn’t know how I was going to make it through all 12 rounds, but I hung in there. SE’s were increasingly getting worse, especially neuropathy. By round 9, I asked MO if we could reduce the dosage and she agreed to 80% which I believe helped greatly with SE’s and some improvements with neuropathy for the last 3 weeks of treatments. Fatigue was the only SE that did not improve much. But that is expected. With so much chemo accumulation, the body is pushed to its limits.

    I’m now 7 days PFC. SE’s are mild. And am feeling better each day. You’re so close to finishing. If you’re still considering completing all 12 rounds, perhaps a reduction of dosage would be the compromise that would help to make it a little bearable.

    Good luck. Im sure you’ll make thedecision that is best for you.


  • ucfknights
    ucfknights Member Posts: 91
    edited May 2019

    hey! My mom just did taxol 3. I was wondering when everyone started feeling My mom hasn’t had any SEs thus far

  • kber
    kber Member Posts: 243
    edited May 2019

    ucfknights - some people are lucky with SEs and hopefully your mom will be among them!  Generally, the SEs seem to accumulate over time, but starting strong hopefully will mean that even if the build over time, they won't be as bad.  Sending hopeful vibes.

    I had pretty intense exhaustion starting pretty much immediately.  Over time, the nausea built and my nails started separating from the nail bed, which was painful.  That started around session #4.  My WBC was problematic throughout, but I was vigilant about washing my hands and avoiding crowds, etc and I never got sick.  Not even the normal winter sniffle I usually have.  I'd say the last 4/5 were pretty tough, but i'm done now and feel pretty strong.  I started rebounding 9 days post chemo and have made steady progress since then.

    Also, I added in Carboplatin, which may have made the SEs worse than just Taxol.

  • margun
    margun Member Posts: 385
    edited May 2019

    I am at early stages if taxol. The next is surgery. Until now I can made my mind on lumpectomy or mastectomy. Having her2 positive but only 15 mm tumor my surgeon recommended lumpectomy. She said her2 is systemic and if recurrence could be anywhere. Yes but at least breasts are out ? Bent ddd the Nd creates imbalance and bmx is even harder surgery. Also I read in one of the threads that mx can create lymphosomthing( I forgot the complete name) complications.

    If chimo goes as scheduled my last taxol is on July 26 so surgery probably will be at the end of August. My son”s high school graduation is on September 20. If I have bmx or mx, I do not think I will be recovered enough to assist. But a long term solution would be preferred without being unnecessarily heavy

    I am so torn.

  • Lily55
    Lily55 Member Posts: 1,748
    edited May 2019

    I finally found out by accident today that my dosage is 275mg TAXOL on the 3 weeks our of 4 protocol.....today was session 6.......

    Would you all mind telling me dosage you were on please, those of you doing TAXOL only?

    I am on reduced dosage steroids which have helped a lot with leg and feet swelling. I have a week off then go back to see the Oncologist when I want to either say

    1. I want a scan to see what is happening as I still have the same two ribs clicking when I move so I am not even sure it is working for all fractures or lesions.......
    2. I want a reduced dosage of TAXOL
    3. I want to know what plan she has in mind for me in terms of number of sessions.....but mostly I want to know if it is working now
  • lilahope777
    lilahope777 Member Posts: 27
    edited May 2019

    Hi Lily - I was on dose dense Taxol every 2-weeks years ago, and I don't remember the dosage. My mom is currently on Taxol, but weekly, for de novo metastatic bc. Her first 2 doses were 150 mg/m2 which she wasn't able to tolerate and she ended up in the hospital. For the next 2 weekly doses, her oncologist lowered the dose to 125 mg/m2. She ended up in the hospital again due to neutropenic fever, dehydration, uncontrolled diarrhea, etc. So her dosage was reduced again to 95 mg/m2. The oncologist wanted her to stay on Taxol as long as she could tolerate it. But Taxol is tough for my mom so she is completing the 12 weekly doses and will move on to something else, to be determined after her next scan.

    I know this doesn't match your dosing schedule, but bear with me. During all of this, I was making myself crazy trying to figure out how oncologists determine Taxol dosage. I finally found a dosing calculator as I learned that almost all oncologists prescribed based on "adjusted body weight" also known as "body surface area" or BSA. Fill in your personal information, and then choose "PACLitaxel". You will need to know the unit of measurement used by your oncologist; here in the US it is mg/m2. Standard weekly dose in the US is typically 85 (needs to be adjusted for BSA). Standard dose given every 3 weeks is typically 175 mg/m2 (needs to be adjusted for BSA). I haven't been able to find any information that matches your 3-weeks on/1-week off schedule. Once you plug in all that information, your dosage will be calculated on your personal BSA and will show in the right-hand box. Note that there is "dose adjustment" drop-down box as well. Perhaps you could show your oncologist the calculator so you understand how she came up with your dosage? I hope this helps a bit and doesn't cause more confusion.

    On a side note, yYour oncologist is correct in being concerned about dosage efficacy. My mom's tumor markers had dropped dramatically during the first 4 weeks. Now that she is on the lowest dosage, her tumor markers are creeping up. But remember, the dosage has been reduced 2x. Nonetheless, here is the link to the calculator: https://www.eviq.org.au/calculators/SCD

    That all said, you deserve answers to each and every one of your questions!

  • Mncteach
    Mncteach Member Posts: 241
    edited May 2019

    Lily— my taxol was dose dense bi weekly but was at 300mg/50ml.

    I hope the calculator helps!


  • Gigi71
    Gigi71 Member Posts: 47
    edited May 2019

    hey y’all! I’ve not posted in a while. Been trying to get ready for surgery! I finished 12 wks of Taxol and Herceptin. My hair thinned bad. So we just put the clippers on it and buzzed. I never lost it, but the thinning looked bad. Much better once we buzzed it.

    I am only doing Herceptin now. Every 3 wks x 30 minutes! No lab work no premeds! Just show up on tome to get my cocktail! This will be thru the end of year

    Just got my expander remover and replaced with my Gummie Bear implant. He lifted the other side so I would be even. Sore as shitbut doing great. On the couch this week resting.

    I have lots to read and catch up on. But nap time. Hope all is well with y’all! 🌴🏖

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Congratulations on being done Gigi!

  • ingerp
    ingerp Member Posts: 1,515
    edited May 2019

    Congrats Gigi! I finished Herceptin last Friday and man does it feel good. (I had labs done every other time--so every six weeks--and somehow that quick half-hour infusion seemed to always take 1.5-2 hours, but still--quicker than chemo!)

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Ingerp, congratulations! Will your port be removed soon?

  • margun
    margun Member Posts: 385
    edited May 2019

    Ingerp- I was wondering if it was possible or allowed traveling by plane once on only Herceptin. It takes 1 year and I was wondering if a plane traveling can be done in between to just for some escape

  • ingerp
    ingerp Member Posts: 1,515
    edited May 2019

    I didn't get a port. And Margun--I traveled quite a bit this last year! I never felt too bad after Herceptin, with the exception of a few sessions a couple of months ago. I decided based on someone else's post that I wasn't getting enough protein--I ate a *ton* of protein through chemo but had cut back significantly. I started making a point to eat red meat the two nights before treatment and felt much better. I never hesitated to make plans to go out the night of treatment, or get on a plane beginning the day after.

  • margun
    margun Member Posts: 385
    edited May 2019

    Ingerp- that is good news. At least I will hope that if after taxol and surgery if all goes well I can go somewhere while on Herceptin. I did not travel leaving all after retirement but while hopefull That i will survive this I am not sure I will even be able to get there. Who knew that I will get this sick ness at my age. So I want to go Paris as soon as I feel good and if between injections of Herceptin every 3 weeks I will be able to go the I will.

    Also it will be escape from the world around me that turns as usual: neighbors, work , friends and extended family doing and going as usual but me. I feel an outcast and somehow outside of my pre- cancer world. I have no idea if I will be ever be back to that world while the fear of recurrence will be always somewhere in my thoughts

  • laurencl
    laurencl Member Posts: 203
    edited May 2019

    I feel a vent coming on...

    Had my 4th of 12 taxol today. Almost did not happen when they saw my platelets dropped again. They let me through, but it took a long time for the doctor to approve it. I had a breakdown while I waited. I eat and try to take care of myself (and everything and everybody else too) and what else can I do?? I know what to eat and I eat it (as my husband looked up foods for me...ugh!). I took off work for the rest of the week ( the only thing that makes me feel normal!), so I can do nothing (except think about that I have damn cancer) and wait to feel bad?This is just such a long, frustrating process and then I will have to deal with surgery and whatever the after is. The endless blood tests and poking and prodding8 more weeks of chemo felt long enough without delays. Over all of it.

    Venting done...

  • erin_t
    erin_t Member Posts: 31
    edited May 2019

    Everyone -- my chemo is officially over and WITH my own oncologist's blessing. He basically said I'd done plenty and it was fine to stop now. I thought it was going to be an argument but it wasn't like that at all. I said to him, you're sure this isn't suicide to stop now? And he said I was going to die of old age.

    Laurencl -- being off work and home doing nothing but surviving chemo, that is the effing worst. It is a big part of why I wanted to stop now. I also worried a lot about delays making it even longer. It is the worst.


  • Yndorian
    Yndorian Member Posts: 236
    edited May 2019

    Erin I'm glad that you've made your decision. Good luck!

  • ipenelope
    ipenelope Member Posts: 233
    edited May 2019

    Erin I'm very happy to hear your oncologist supported your choice!! Yay to being done with chemo!!

    I hope all you ladies are doing good and continuing to kick cancer's arse in your own ways!!

    ~Katie💗

  • ingerp
    ingerp Member Posts: 1,515
    edited May 2019

    Lauren I have beat this drum often but I'll say it again--protein protein protein. Through chemo I ate red meat 5-6 times a week, had an egg or two every day, and had a protein shake every day (one of those sugar-laden-but-delicious pre-made Odwallas or Bolthouse Farms). My blood counts stayed really good throughout--in fact, my MO said I was the only patient she'd seen who was actually making blood through chemo. In fact, I had cut way back after finishing and started noticing Herceptin alone was making me feel pretty bad. I got it in my head I wasn't getting enough protein so made a point to eat red meat the two nights before treatment and felt much better.

    Erin--I know you've had a rough time. Glad to hear the hardest part is behind you.

  • mcbaker
    mcbaker Member Posts: 1,833
    edited May 2019

    Erin, I am glad that your prognosis with quitting the chemo is so good. Of course, that is the point of it all. Glad your doctor could see your misery.

  • Yndorian
    Yndorian Member Posts: 236
    edited May 2019

    Laurencl, when I started my chemo I was low in platelets too. Like ingerp says protein helps a lot, and I took pure chlorophile. I have read that chlorophile is good for make blood stronger, and it worked! My platelets was normal during all the chemo (AC and Taxol). Good luck!

  • notdefined
    notdefined Member Posts: 267
    edited May 2019

    Congrats on being done Erin_t!  Glad you were able to get your ON blessing and peace of mind!  I am really surprised that they had you on anti-nausea meds for Taxol  I haven't been on any since starting.

    Laurencl- sounds like the gloomy feeling I have noticed on Taxol too.  It is so frustrating to not have our body react the way we want it to.  I am still watching my liver enzymes, as the week before one of my tests was elevated. I had to postpone my AC by a week due to elevated levels.

    I am officially on vacation today, and I am exhausted from the conference.  But I was able to get through it, and it feels great to have some time with my family. Sleeping has been a challenge, and I am now taking both Benadryl and melatonin.  Even with that, sleep is a struggle.  We are thinking of taking the kids to an amusement park, and all I can think about is wearing this uncomfortable wig.  I guess I just need to get over it.

    Hope everyone is doing okay through the SE.  I was so busy this week, that I didn't notice the gloomy feeling or the bone aches as bad.  I think it really helps to be busy.

  • loiswb
    loiswb Member Posts: 86
    edited May 2019

    Erin, I am happy you have reached a decision with your MO's okay. That has to be a big relief for you!. notdefined--enjoy the vacation time!! (I would not wear a wig to an amusement park---just do a scarf or something). Finished #6 Taxol today so 1/2 way done! Who was asking about dose of Taxol--mine is 144---I don't know the units. (The nurse giving always double checks the patient name/dose/rate of infusion with another nurse before they start it, and they repeat it out loud each time, so that is how I know--I am sure it is based on weight and height perhaps. My WBC is low again, so I have to postpone leaving for the weekend until I get the shot, but at least they are letting me do it at noon tomorrow instead of 3 or 3:30 which is when it technically should be. Does anyone know what to do/eat to improve the WBC count? Lauren, HUGS.....this is tough, no doubt about it, and as if having cancer to start with isn't enough of a downer, the meds have to get us down too. You can do it!! 

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    I'm trying to adjust my attitude and see things in a more positive light. I was pretty down about having to have a mastectomy over a lumpectomy as originally advised but I know I'm fortunate. My cancer was caught at a relatively early stage. My tumor has responded well to chemo and I'm guessing it being close to the skin in better than it being close to the chest wall.

    If I hadn't had an anal fissure prior to starting AC, my experience on AC would have honestly been unremarkable. I experienced flu like symptoms after my first dose, but only constipation and fatigue going forward. Once MO stopped the anti nausea med the constipation stopped.

    I had my 5th Taxol dose yesterday (I asked and my dose is 300). The only side effect I've had is intestinal distress days 2-5. It's manageable and only hits in the morning. I haven't had any signs of neuropathy yet and I'm so thankful for that. I'm walking 5 miles a day and haven't been fatigued.

    I'm honestly feeling good. I know things can be so much worse and I need to keep that in perspective.

    Cancer sucks. It robs us of our dignity and makes us all vulnerable. Sometimes it's hard to focus on what's good and some mornings I wake up with an overwhelming feeling of sadness, but I know there is an end in sight. I need to focus more on that.

    I hope everyone has a great holiday weekend.

    Dawn

  • laurencl
    laurencl Member Posts: 203
    edited May 2019

    DawnS1962

    Felt all the same stuff this morning. Sad when I saw I had no eyebrows. Think I have to stop working for a bit, and that had me down too. Cancer, the gift that keeps on giving! Let’s get all this done and get on with it! Sending love and light to all

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Lauren, I haven't lost my brows yet but I've lost my bottom lashes. I read on one of these boards that castor oil helps them grow back fuller. This site has been remarkably helpful for so many tips. I just ordered retanol and vitamin C serum after reading that chemo really ages the skin. I'm sure stress of this crap doesn't help either.😳

    If you stop working do something to fill the time. If you aren't fatigued try exercising. I swear the walking I do everyday helps my state of mind. I've lost 14lbs so far from loss of appetite and taste. I would like to keep it off because I've read hormone therapy which I'll be on for 5 yrs can cause weight gain. Just another thing to deal with so hoping to get a jump start on keeping my weight in check.

    Dawn

    🤗🤗

  • DawnS1962
    DawnS1962 Member Posts: 198
    edited May 2019

    Lauren, I haven't lost my brows yet but I've lost my bottom lashes. I read on one of these boards that castor oil helps them grow back fuller. This site has been remarkably helpful for so many tips. I just ordered retanol and vitamin C serum after reading that chemo really ages the skin. I'm sure stress of this crap doesn't help either.😳

    If you stop working do something to fill the time. If you aren't fatigued try exercising. I swear the walking I do everyday helps my state of mind. I've lost 14lbs so far from loss of appetite and taste. I would like to keep it off because I've read hormone therapy which I'll be on for 5 yrs can cause weight gain. Just another thing to deal with so hoping to get a jump start on keeping my weight in check.

    Dawn

    🤗🤗

  • notdefined
    notdefined Member Posts: 267
    edited May 2019

    Loisb-I am one of those who hasn't been brave enough to go in public without my wig, or just a head scarf. I didn't want the looks, and was back in my home town. I didn't want to run into acquaintances without it. I found a solution with a baseball cap. I even went on a couple of fast roller coasters. My remedy was to wear a hoodie to make sure my wig didn't fall off!

    This morning i could barely get out of bed from all the walking. I forced myself to get the kids and i to the beach. DH stayed at the hotel watching a race he's been waiting for. I'm so glad i made myself come out here. I love the beach, and it really makes my soul happy. It's kind of cold, but the kids are loving it, and i am bundled up!

    I got the chance to see my aunt who is in the final stage of dementia. It was heart breaking. It gave me some thought about how I would want to leave this world. I know that's a little morbid, but having cancer really made me confront my thoughts about death.

    My eyebrows and eyelashes have severely thinned out. I'm relying more on makeup, and find it amusing when i can do it right versus when I look ridiculous. Having a bad brow day is a new term in my life.

    Last day of vacation! Hope you are doing well!

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