Weekly Taxol group

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  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Lily, hablas español verdad? Me cuesta un poco el ingles asi que te escribire en español. Hay un hilo de taxol semanal de etapa IV. Creo que puedes publicar alli tu pregunta sobre el tratamiento que te darán. Creo que el ritmo es 2 semanas y 1 de descanso durante un periodo mas prolongado, pero alli encontraras mas informacion, ya que este hilo es mas para el tratamiento de 12 semanas fijas. Suerte!

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  • Mncteach
    Mncteach Member Posts: 274
    edited April 2019

    Lily55– Taxol seems to vary by your oncologist and what chemo cocktails you receive. I’m so sorry that you have to deal with this while you are still grieving. I had a port put in not a PICC line so I can’t speak about the pain level

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  • Chickywicky
    Chickywicky Member Posts: 9
    edited April 2019

    Hi!

    I started weekly Taxol with Herceptin every three weeks on March 26. After my first infusion (with both), I had major stomach cramps and body aches for the first couple of days. This week was only the Taxol, and I've had a lower than normal body temperature, a touchy stomach, and fatigue. I get migraines easily so I decided against cold capping. My head is tingling like crazy. For those of you who only had weekly Taxol, when did your hair fall out?

    I'm trying to decide whether to proactively cut it short or whether I should just wait until it falls out. I have super thick, curly, shoulder length hair. I'm going to look like a poodle with short hair, but I think that may be preferable to find lots of long hair all over the place!

    TIA!

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2019

    Si hablo español, me dijo que el ritmo será tres semanas de quimioterapia, una de descanso, análisis de sangre y otra tres semanas.... pero no me dijo cuánto tiempo tardará en total......yo la preguntó y me dijo que no sabía pero como puede ser?

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  • MCBaker
    MCBaker Member Posts: 1,555
    edited April 2019

    Chickywicky;

    My hair had been 2 1/2 inches for five years, so my experience may be different from yours. I had taxol weekly with herceptin every three weeks. By the beginning of the fourth week, my scalp was sore from hair coming loose. I had it cut shorter, but the soreness and fallout continued. I finally shaved it, and was comfortable only wearing soft headgear. Eventually the soreness went away.

    If I were you, with beautiful curly hair, once the soreness and fallout begin, I would have it cut to 2 1/2 inches. The mere weight of your hair would make it worse. Then, IF people give you feedback about ugly bald spots, you can shave it.

    Proactively shaving it off would be too emotionally traumatic for you. Take it in steps as the situation demands it.

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  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Es posible que sigas en tratamiento hasta que vean una mejoria y luego te pasen a una quimio oral. Te estoy enviando PM. Besos

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  • nonahope
    nonahope Member Posts: 695
    edited April 2019

    Lily...I had 15 infusions of Taxol for bone marrow mets. I had one every three weeks, then I was off a week.

    Hope

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  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Chikywiky I made an extension with my own hair and I use it under hats and scarves. The effect is quite realistic. Massage your scalp to detach rest of follicules can help with pain

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2019

    Thank you Hope, they have me on the 3 weeks on one week off route but have not said how many sessions in total, she just said she didn´t know...hope its not indefinitely....I always thought bone was slow to react but its been pretty fast for me in fracturing and shattering........

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  • nonahope
    nonahope Member Posts: 695
    edited April 2019

    Lily...I wish you the best. My only side effect from the Taxol was neuropathy in my feet. Keep us posted.

    Hope

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  • HopeBry
    HopeBry Member Posts: 88
    edited April 2019

    Just had my 11th and final Taxol. Would of held out for 12 but have been getting sore fingertips and numb feet. I told the oncologist thats it for me, dont want it to become a bigger issue. Stop it while its starting. She didnt pressure me she just said you have enough in you. I feel good to stop just waiting for my body to feel good.

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  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    Congratulations HopeBry! I've being thinking the same thing. I will do #10 but don't want more! My diarrhea is out of control and my feet are worse week to week, I don't have a port and my veins are practicaly desapeard. 10 o 12 what is the difference? Come with the surgery now!

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  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 127
    edited April 2019

    Hi Lily,

    I had AC+T. On AC, did infusion the standard way. But after AC #4, and taxol #1 & #2, with so much injury to the veins, I requested a PICC line. It was only slight pain for a second or two when they placed the PICC line.

    A drawback is showering/ bathing. The PiCC line has to stay dry which is a bit of a bother. But not the worst thing ever.


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  • HopeBry
    HopeBry Member Posts: 88
    edited April 2019

    Thanks Yndorian. Yea I dont want it to get worse if its starting now. I thought neuropathy wouldnt happen at all since ive got this far. Do whats best for you. Some stop at #9 it depends on the severity of your symptoms. I have the port and it doesnt bother me. I didnt want them to kill my veins each time and I didnt want that red devil AC chemo burning the hell out my veins either. Im gearing up for my surgery next month. Just have to get clearance from the doctor and ekg, etc.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2019

    Thank you Angie.....i know I will be happy about it afterwards but the descriptions of it going on make me a bit squeamish! I need to buy some longer sleeve shirts or T shirts now to cover it up........

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2019

    Sorry another question - over the last few days I have been getting cramping in my hands and in my feet, I did not have it before the first chemo....could this be connected to neuropathy? My hands are tingling and then go in to a spasm that is hard to control and my feet tingle but react less.......I don´t really know what to look out for... I have ordered Vit B6 but its not arrived yet........

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  • MCBaker
    MCBaker Member Posts: 1,555
    edited April 2019

    Cramps and neuropathy are closely related. Drink more fluids, dehydration is sometimes a trigger. Best way to break up a cramp is to force the body part in the opposite direction of the cramp.

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  • HopeBry
    HopeBry Member Posts: 88
    edited April 2019

    @Lily55 I started out getting tingling in my feet like pins and needles after taking a walk and cramping in my hands. I started to drink more ice water and didnt get it so much. Then after a few more infusions, my fingertips and nailbeds got really sore. Then my feet got numb a lot after walking. So I guess something small over time can lead to neuropathy for some.

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  • Lily55
    Lily55 Member Posts: 3,534
    edited April 2019

    Thank you, I am making a big effort to drink a lot more water now........

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  • Margun
    Margun Member Posts: 419
    edited April 2019

    Please answer.To ladies that had Ac and taxol. Which one was easier to handle. I am in the midst of Ac and had terrible experience. What expect with taxol? Nurs said it easier but they told the same for Ac. Thanks

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  • Pommom1809
    Pommom1809 Member Posts: 176
    edited April 2019

    Taxol was pretty easy for me, but the AC wasn’t too bad either. I didn’t get sick with either one, but did have the side effects. My feet are causing me a lot of trouble. My walking is not very good because of the neuropathy which I didn’t start having until #8 Taxol. It was mild at first then kept getting worse, fingers are feeling some better, but nails are turning black.

    Doris

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  • Margun
    Margun Member Posts: 419
    edited April 2019

    AngieInAmsterdam- I am having also Ac and then taxol. Which one was tougher for you. So far the Ac was too hurst on me.

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  • HopeBry
    HopeBry Member Posts: 88
    edited April 2019

    AC was pure hell to sum it up.

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  • Margun
    Margun Member Posts: 419
    edited April 2019

    hopebry- and what about taxol? Hopefully easier

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  • HopeBry
    HopeBry Member Posts: 88
    edited April 2019

    Taxol was a little more tolerable. You will have side effects but Im sure it will not be as bad as AC. I was able to eat again on Taxol but taste buds were off. If you get neuropathy on Taxol that can become a problem but some dont get it at all.

    AC I almost quit after the 3rd one. I could not eat. Was sick all the time and losing weight.

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  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 127
    edited April 2019

    Margun, AC wasn’t so bad. SE’s were manageable. Fatigue was a little tougher by round 4. Bounce back was very slow. Cycle was every 2 weeks. Just enough time to recover for beginning of Taxol.

    Although, I don’t believe Taxol itself is horrible. However, I did begin to develop a cough after 1st infusion. MO thought it was just a cold. Then, thought it developed into a chest infection. Did chest X-ray, saw slight inflammation. Did one course of antibiotics, but was not successful. By week 4 of Taxol, which was a weekly cycle, breathing had become very difficult with heavy chest cough and flu like symptoms plus low grade fever. 2nd X-ray, inflammation worsening around lungs. Another course of heavier antibiotics. Still, breathing and coughing becoming unbearable.

    Even though I could barely speak or breathe, was about to go for round #7 Taxol, when I told on-call doctor that breathing was nearly impossible. He consulted with MO, and they cancelled chemo and ordered CT scan. Turns out it was radiation pneumonitis. For some patients, 1-6 months after radiation treatments, can develop pneumonitis, which mimics pneumonia.

    Have been on prednisone, a corticosteroid, for 5 days now, and am feeling so much better. Having correct diagnosis so important. Haven’t had much other SE from Taxol, except for this reaction. Read that taxane can trigger pneumonitis if prior radiation treatments.

    Going in for round #7 Taxol tomorrow. Hopefully, finishing this half of Taxol will be easier than how I began it.

    Hope this helps.



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  • Yndorian
    Yndorian Member Posts: 263
    edited April 2019

    To me AC was more tolerable than taxol. I was nauseous 2-3 days post infussion an then back to a relative normality before next. Some pain bone when my wbc were low. Taxol is allways body pain, anguish, diarrhea, depressing, neuropathy, not apetite at all and the list goes on and on. I can't wait to finish this torture

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  • Margun
    Margun Member Posts: 419
    edited April 2019

    AngieInAmsterdam- pneomonitis was due to taxol or previous radiation

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  • Margun
    Margun Member Posts: 419
    edited April 2019

    the medical personnel toldnethe Ac will be some fatigue. Rong in purpose or not. It is horrible. Now that say taxol is easier no really se and I can resume working.

    Any body could work while on taxol? Based on a few responses I could not conclude that taxol was much easier.

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  • AngieInAmsterdam
    AngieInAmsterdam Member Posts: 127
    edited April 2019

    Yndorian, can not agree more! This whole process has taken so much away from me. Especially the things I enjoy in life. Going to hospital nearly on a daily basis is one thing, but dealing with SE’s, painful infusions, and being missed diagnosed for 6 weeks without being able to breathe was insufferable.

    And everyone around me treating me as if I’m so delicate. I’m not. I just want to be able to do regular things without everyone seeing me as a cancer patient. I’m still very capable. It’s very frustrating. As you’ve said, can’t wait to finish this torture

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