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Weekly Taxol group

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Comments

  • sammi2006
    sammi2006 Member Posts: 48
    edited February 2018

    Paula- I had problems with my neutrophils most of the time. When they got down to. 4 right before taxol #4. They held chemo that week. The next week they were 0.7 and that is when I started getting the shots a couple times per week until I finished taxol. For the most part while getting the shots they hung out around 1.0. I had my last infusion on the 2nd and they were still at 1.0. My rbcs got low, but never enough for a transfusion.

    Neutropenia sucks! My MO says he normally doesn't check labs for a month after the last infusion, but because of how low I have been for the past couple of months and because I did not get the shots after the last infusion I go back in on the 16th for labs and to go over my brain mri results.

    I am keeping my fingers crossed for you Paula!

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Lisa...The information is from my Eating Well Through Cancer book. It claims NO RAW FOOD...but canned or cooked fruits/vegs are acceptable. Another thing on the "no" list is honey and uncooked herbs - use dried.

    I'm praying my scans are okay. My onco has called me from his cell phone with bad results, so I don't want to see his name pop up on my caller ID!! I see him on Thursday and hoping for good news or, at least, stable.

    Hope

  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 65
    edited February 2018

    Sammi - thanks for posting. I meet with my MO before Taxol/Carboplatin this Wednesday, the 14th, and will have questions lined up for her based on how my body has (or has not) tolerated this chemo so far. If I need to power through, I will. My tumor has shrunk significantly, and part of me wants to ask, "Can I just go to surgery now, please?" But, of course, I want to give myself the best odds. Please post about your labs and your brain MRI.

    Lisa and Nonahope - I can't remember when I've had fresh veggies. The dietician at my hospital was very clear about what I can and cannot eat, and my sweet husband and I have stuck to that for over four months now. I guess every body is different, and mine just takes this particular chemo combo hard.

    Paula

  • sammi2006
    sammi2006 Member Posts: 48
    edited February 2018

    Paula- I hope your labs and appt go well this week. How many more infusions to you have left? This chemo gig is exhausting, but it sounds like your tumor is responding good!


  • PaulaAtlantaGA
    PaulaAtlantaGA Member Posts: 65
    edited February 2018

    Sammi - After finishing AC (4 over the course of 8 weeks) I began what was supposed to be 12 Taxol infusions with Carboplatin added every third week for a total of 4 Carbos. I have missed two Taxols so far due to low numbers. I'll see what she says on Wednesday.

  • LisaCincy
    LisaCincy Member Posts: 316
    edited February 2018

    Thanks Hope, I knew to avoid honey as my MO mentioned that specifically. He said that I should thoroughly wash all produce, but never said to avoid raw produce or herbs, which I've been eating in abundance since my DX. While my WBC and RBC both lowered while on Taxol, I never had to miss a treatment (last one is in 2 days), so I guess I did okay. I wonder if the author advises against raw produce because these are known to cause diarrhea. Luckily I didn't have any major gastro issues during chemo, either.

    I will say that one of my biggest frustrations in all this was trying to figure out what was best to eat. It seems that everyone has a plan and it's often contradictory. For instance, the ACS says that during chemo you should basically eat whatever you want, even ice cream every day, in order to keep up your strength. Another site recommends restricting your diet to plant-based, lean meats and whole grains, while another says you should not eat at all on chemo days. How is one to know which advice to follow?

    PaulaAtlanta, I hope your numbers improve. It's depressing not to be able to keep on track with chemo.


  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Lisa...Yes...this book breaks down all the cycles of chemo, as far as what foods to eat...day 1 chemo, during neutropenia, diarrhea, constipation, sore mouth etc. It's very informative and has some good recipes for all cycles. The "shopping list" for neutropenia are: Butter, bread, cheese, canned broth, dried seasonings and spices, eggs, canned fruit, grits, skim milk, oatmeal, pasta, potatoes, skinless boneless chicken breasts, canned or frozen - fresh must be cooked, yogurt, whipped topping, all baked goods, jello, syrup, ice cream and sherbet, cooked hot soups, all breads, rolls, crackers. I agree, it is all very confusing with different recommendations from different sources.

    I will gladly provide the other recommendations for a particular cycle if anyone wants them.

    Hope

  • Motherofall6
    Motherofall6 Member Posts: 25
    edited February 2018

    A/C is done, in 2 weeks I start weekly taxol for 12 weeks .


  • LisaCincy
    LisaCincy Member Posts: 316
    edited February 2018

    image


    ,image

    Done with chemo! Taxol started out rough as evidenced by the photos above.. I’m hoping that my fingernails won’t fall off altogether but it may happen. Once the dosage was reduced by 25% because my fingers felt like they'd been slammed in a car door, it was much easier.

    Other SEs were numbness of feet and fingertips, extremely dry sinuses, and constantly runny and bloody nose. I was very tired the last two treatments and was routinely sleeping 10 hrs a night. Hair staffed growing about three weeks after dosage reduction.


  • beauz
    beauz Member Posts: 113
    edited February 2018

    Hi all.

    Ouch, Lisa. That looks painful! The colour of my nails was never this bad, but the shape of them was all wonky, like having ridges and dents. Best wishes for your surgery and recovery!

  • Dark13
    Dark13 Member Posts: 50
    edited February 2018

    Hi folks,

    Trust that you all are having a good day today despite all the SE that accompany us on this journey.

    I am new to this thread I am tripple negative (mastectomy left side no recon) and will be starting Taxol tomorrow. I have already completed 4 cycles of AC and the rest period between trearments is over. Scared It was great feeling normal for the last 3wks.

    I have been reading some of the posts and I am really terrified of the side effects.

    During AC I pretty much stuck to eating fruits, veges, bread, eggs, tuna, peanut butter, yogurt, cornflakes drink water, (this was when I could have tolerate it that metal taste urghhh), had lots of grape gatorade this was more tolerable could not stand the smell or the taste of ginger or lime. I also juice mainly beets, pumpkin and carrots on my good days.

    Now with Taxol it appears that what you eat is even more important as it affects your blood and platelets count. (Pls correct if i'm wrong).

    I would love it if you all can suggest some foods or recipes that can be eaten to at least help keep energy and blood count levels up. What do you all use as a sweetner? From what I read B6, B12 and LGlutamine helps with the neuropathy not sure about whats good for the bone pain and it seems nausea is a big SE too I really thought that ine was over when the AC was done.

    Oh God i'm feeling kinda panicky and i'm usually very positive and upbeat. Reading all the SE possible has messed with my mind.Bawling

    I am really terrified of the side effects and want to do everything I can to keep them at bay.

    Thank you looking forward to hearing from you all.

    Dark13.

  • CIW
    CIW Member Posts: 57
    edited February 2018

    dark13-

    Yes there are lots of possible side effects but same goes for AC. It honestly just depends how your body responds to it. AC was really hard on me, Taxol was not bad at all. Some people have an opposite experience. Point is, my best advice is to not worry too much and take it as it comes. Taxol is often the easier of the two. I hope you have an experience similar to mine and it's not too bad. Just know you'll get through it and it's awesome youve made it through AC!

    I did not have an issue with counts except at the beginning of Taxol, but I know some of the women on here have diet stuff they’ve tried for their counts, so I am sorry to not have suggestions for you there.

    Good thoughts heading your way.

  • Dark13
    Dark13 Member Posts: 50
    edited February 2018

    Thank you CIW for your words of encouragement. So far my journey has been tolerable. Claiming the victory over this stage.

    Blessings Dark13.

  • GenevaC
    GenevaC Member Posts: 38
    edited February 2018

    Congrats on finishing AC dark13!

    And thank you everyone for the food discussion - I need to focus on iron rich foods mentioned. I guess I’ve just been lazy and discouraged, so haven’t been proactive. Plus super annoyed at the nose bleeds. But taxol + cold + anemia is making me very low energy, which is bad for morale, keeps me from exercising and might delay treatment. Yep, need to kick myself in the butt and be proactive

  • GenevaC
    GenevaC Member Posts: 38
    edited February 2018

    “Generally speaking, it is not necessary to avoid raw fruits and vegetables when white blood cell counts are in a lower range expected with many types of chemotherapy. Fruits and vegetables are an important part of a healthful diet and contain a multitude of beneficial vitamins, minerals, and phytonutrients that support your body's immune system...

    There is one condition under which many treatment centers recommend avoiding consumption of raw fruits and vegetables, and that is when a patient is diagnosed with neutropenia. Neutropenia refers to a condition in which white blood cell counts fall below a certain threshold, placing patients at very high risk of infection. The threshold for diagnosis of neutropenia varies by institution. Your doctor or nurse will alert you of this condition. Due to the high risk of infection, many institutions recommend patients with neutropenia follow a neutropenic diet, which often includes avoiding all RAW fresh vegetables and most fresh fruits.Cooked fruits and vegetables are SAFE to consume. It is best to speak with a registered dietitian if you are neutropenic in order to determine the optimal diet for your condition.”

    Copied from very reputable Dana-Farber institute http://www.dana-farber.org/health-library/articles/low-white-blood-counts-and-diet/

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Dark 13...I had Taxol #10 yesterday. I have metastatic breast cancer in my bones. When I was initially diagnosed with BC in 2010, my "cocktail" was Cytoxan and Taxotere, so I'm not familiar with AC. As for the side effects of Taxol. For me, nothing but a couple days of achiness - usually on day 3-4. I've had no other side effect. Yes, diet is very important. You can Google foods to eat while on Taxol and there are good lists. As Geneva said, when in neutropenia raw fruits and veggies are a NO. You can get this info online, as well. I wish you the very best with your Taxol infusions and most importantly -- very few side effects. Keep us posted as you go along.

    I had my CT/oral and IV scan last Friday. I saw my onco yesterday. There may be a bit of progression in my bones, so he's ordering a nuclear bone scan. He said often times this will show on a CT and could easily be pseudo(?) spots and could be healing. But, a nuclear scan will differentiate. The CT was for my lungs, liver, pelvis area - all still okay in that area.

    Hope

  • sammi2006
    sammi2006 Member Posts: 48
    edited February 2018

    Good news! I got my mri results in the mail today and my brain is okay!! Lol. I was supposed to go to my drs office and have labs drawn to see if I'm still neutropenic and to go over my mri results but my dr called in sick and so I am rescheduled to go see him on the 21st. I am so glad that report came in the mail today, though. My mri was monday and if I had to wait till next wendnesday I'd lose my mind!

    Dark13-Everyone experiences side effects differently and not everyone gets every single se. I know that is hard when you are trying to get yourself ready for a treatment. My biggest ses were neutropenia, fatigue, and minor neuropathy. My neutrophils were borderline low when I started taxol at 1.5. Unfortunatley there are no foods that you can eat to prevent neutropenia. When my counts got super low I couldn't eat fresh fruits or veggies. Everything had to be cooked. As for fatigue and neuropathy-those didn't really hit until after my 5th taxol. I am still dealing with some fatigue and neuropathy in my fingertips and toes. On the positive side- I didn't have that awful metallic taste in my mouth that I had with AC. Sick


  • sammi2006
    sammi2006 Member Posts: 48
    edited February 2018

    Hope-Fingers crossed that those are just pseudo spots!


  • LisaCincy
    LisaCincy Member Posts: 316
    edited February 2018

    Sammi, congratulations on the MRI results.

    Hope, praying that your scan is showing innocuous spots.

    I’m a mere 3 days post chemo and have been downing water like a fish. Hoping to get my sinuses back to normal before surgery on 2/28. And hoping my nails don’t fall out. They seem healthy beyond the bloody area. And FTR as bad as they look, they do not hurt. Instead, they are numb. In the grand scheme of things, a minor SE

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Sammi....Wonderful news!!!

    Lisa....Will be with you in spirit for your upcoming surgery!

    Hope

  • missmelissa90
    missmelissa90 Member Posts: 23
    edited February 2018

    I am sending positive thoughts to you Hope! Sammi...glad to hear the good news.

    As for Taxol compared to AC, it hasn't been the "walk in park" that my Oncology nurse promised before I started, but it has definitely be less "taxing" :) than AC. I don't know if my muscle pain on day 3/4 is due to my WBC booster shots or from Taxol, but I that is the worst pain I suffer and that is usually so bad that I can't have people touch me/hug me for those two day. I want to say that I was more like you at the beginning...worried and frightened from all the possibilities and the long duration...12 treatments! But I have worked really hard to stay positive, eat well and exercise (well, that has been the weak area). I just had #9/12 and have developed almost constant pins and needles on the bottom of my feet and I'm going to try the B12 that people have recommended to see if that helps. I can't say if it has contributed to my overall bounce back from treatment, but I try to get massages at least once every two weeks, usually the day after my treatment, and it sure feels good to zone out and not think about cancer for a while!

    I'm looking at scheduling my BMX in early April....is anyone else looking at surgery around that time?

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Good afternoon...

    I had my oncology appointment yesterday, after my nuclear bone scan this past Friday. I am so happy to report that all is stable. He said he "smelled a rat" with the results of my CT scan the week prior to my bone scan. He said it often happens that bone mets look really bad on a CT and he just knew I couldn't have gone down hill that quickly because my labs were looking better each week. He said a CT is great for looking at soft tissues, but not the bones. So, you can be sure I am a happy camper at this time. I will continue with Taxol for a total of 18 infusions. I had #11 yesterday....so I still have a way to go. After that, I'm not sure. He mentioned a monthly injection of a type of hormone. We shall see.

    Wishing all a great day!

    Hope

  • PatinMN
    PatinMN Member Posts: 784
    edited February 2018

    nonahope - great news!

  • CIW
    CIW Member Posts: 57
    edited February 2018

    nonahope—I am SO happy to hear this!!!

  • LisaCincy
    LisaCincy Member Posts: 316
    edited February 2018

    Wonderful news, Hope. Thanks for sharing with us. Have a great weekend!

  • sammi2006
    sammi2006 Member Posts: 48
    edited February 2018

    Hope-that is awesome!!

    I had an appointment this week and found out my brain mri is good and for the first time since starting taxol I am not neutropenic!! Now it is on to radiation!

  • kamalokitty
    kamalokitty Member Posts: 11
    edited February 2018

    Today was my 16th and final infusion of Taxol, and I'm so happy. The doctor wanted to cut it short because of the neuropathy, but I begged her to let me muscle through. I did three sessions of acupuncture and started icing my feet and hands during and after infusion. It kept the neuropathy from progressing, so I'm calling it a successful alternative remedy, just to get through without having to cut the treatment short. Typing and composing is still slow and error filled, but I think once the chemicals are out of my body, I can start practicing and retraining my mind to be faster.

    I have surgery on Monday to remove the port. I meet with the radiologist next week to discuss radiation. It feels good to be done with chemotherapy. I managed to avoid the worse SEs like neutropenia.Ready to move on to the next leg.

    I hope for everyone's quick recovery and conclusion through this part of treatment. Onward!

  • nonahope
    nonahope Member Posts: 695
    edited February 2018

    Sammi....I think you'll find radiation is a piece of cake compared to the chemo. Best of luck!

    Kamalokitty....Woo Hoo on ending the Taxol. I'm hoping I make it through my scheduled 18 infusions. Taxol really hasn't been bad for me, so I'm lucky in that respect. Port removal is easy. I kept my port in for a few years the first time around. I have a friend who has had her port for almost 10 years!!

    Have a great day!

    Hope

  • dkk
    dkk Member Posts: 47
    edited February 2018

    Ok so done with Taxol last week, thinking I would start to feel normal again! Planned a trip with hubby , 40th anniversary, done with chemo. Two weeks off before I start rads. All ready to leave on Thurs. and bam !!! Back in the er with severe pain in my right abdomen. After X-ray, ultrasound doc says I have gall stones and an "enormous" hiatal hernia. When does it ever end? I just want to feel good again! Does that ever happen? What made me think I would every feel well enough to go on a trip?

    Well needless to say everything was cancelled. It has rained in Ohio for about 10 days straight. Rarely any sunshine. I just feel like if I could just sit outside and let the sunshine glow on the old tired body I would feel so much better.

    It is a stark reality that even though your chemo is done, our bodies will still need some healing and may take some time. I think I just got caught up in the celebration and the bell ringing and being done. I have to slow done and get stronger.

    Sorry to vent, I am usually not a whinner. Ok I got my venting out, stomach pains gone today, now I can pick myself up andmove on 😩

  • mucki1991
    mucki1991 Member Posts: 77
    edited February 2018

    DKK

    • I finished chemo Jan 12 it took about 6 weeks for me to feel a noticeable improvement. I thought I would feel better more quickly than I did. I'm not 100% but when you feel that bad anything seems like a huge improvement. Best wishes for you

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