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Weekly Taxol group

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Comments

  • Kz1966
    Kz1966 Member Posts: 40
    edited January 2017

    I just finished my 12th Taxol and it was much easier than A/C. I have had the same issue as Bravepoint as far as the end of the tongue. It comes and goes. Baking soda and warm water helps. I feel achy on day 3 and 4. Day 4 Iay around and sleep. Day 5 aches are gone just feel a little tired. I tend to eat cold stuff during those days. Taste buds are hit or miss. I have worked my entire time during Taxol. Very little neuropathy. Did lose my eyebrows again last week. My hair has been growing thru taxol. Next step is surgery. I meet with my BS on Thursday.

    Have a great day!


  • JanetCO
    JanetCO Member Posts: 11
    edited January 2017

    Hi! I finished my 12 Taxol treatments on Jan. 17th. I thought that I would feel great by now and get some things done. But I have no energy or ambition to do anything. I still have diarrhea and nothing taste good either. I don't know if it is the crash because of no more steroids or I am depressed. Is there anyone else on here that is finished and still feels wiped out?

  • vlh
    vlh Member Posts: 773
    edited January 2017

    Thanks, Nayda. I mentioned the neuropathy to the chemo nurse, but am only seeing the oncologist every other week now and last week was an "off" week so didn't get to discuss it with her. I've had so many delays already that I don't want to cancel, but maybe a dosage tweak will do the trick.

    Lyn

  • Elvin
    Elvin Member Posts: 4
    edited January 2017

    Last taxol is tomorrow. Then I should move to radiotherapy.

    I have terrible mood problems, since 10th taxol foot nail problems which hurts a lot, at the beginning I had muscle weakness but I started to run and increase my km slowly, after a few weeks that was better, had a few light signs for neuropathy but didn't worsen (my MO told me to keep up exercising), hot flushes, no eyebrows and eyelashes but my hair grows, diarrhea, mild blowing, low blood count that needed meds, lately chest pain that doesn't go away. I also got sick a lot but I also didn't isolate myself like the time I was on AC. Very sleepy during and after infusion...

    The most difficult thing was to go every week to the hospital... now for radiotherapy it will be every day. I'm sick and tired of that. I'm practically just crying all time... totally end of my strength and patience....

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2017

    By day 3 my skin hurts. Like a really bad sunburn. Anyone else get this. I am always tired. Just finished number ten. I am on Taxol indefinitely so no light at the end of my tunnel

  • nayda985
    nayda985 Member Posts: 270
    edited January 2017

    Janet I had my last chemo Jan 13th and I feel the same as you....I am so tired....when I am not at work all I do is lay in the bed...one day I got up took my kids to school and didn't go back to bed as I normally do if I am off..i ran errands and did some shopping stayed gone all day til it was time to pick up my kids..i got home finally and all I could do was lay done..i was completely wiped...I thought I could stay on the go but I learned that day that even though I am done with chemo my body is still recuperating from it.

  • nayda985
    nayda985 Member Posts: 270
    edited January 2017

    VLH..i understand...you have been through so much..I hope your onc will tweak the dosage for you to give you relief:)

  • aterry
    aterry Member Posts: 142
    edited January 2017

    DianaRose and Elvin, I'm sorry that you're experiencing so many Taxol problems. I have 8 more to go and I worry that my SEs will get worse. Congratulations to those who have finished, I"m very happy that you can look forward to improvement in the SEs. There has been much talk about icing. I've done it during infusion for my fingers but not my feet, yet. (Last week I iced my feet after I got home.) This week I'll try icing my feet during infusion. Could someone point me to a study that discusses the effectiveness of icing? Is it most effective during infusion when (presumably) the Taxol is at it's highest concentration in the blood?

  • seq24
    seq24 Member Posts: 451
    edited January 2017

    aterry-I cannot point you to a study about icing during Taxol but I can share my own experience. I finished 12 rounds of Taxol on Jan 20. I had 4 rounds of AC chemo before that. When I first met with my oncologist, she mentioned icing hands and feet during Taxol to prevent neuropathy and nail changes. I was very worried about neuropathy. When I got ready to start the Taxol I mentioned icing to the infusion nurse and they said that the doctors were no longer recommending icing anymore (just 2 months after the MO had told me about it) because there was no official study saying that it actually worked. But that particular nurse told me she had seen numerous instances where it did and she and the other nurses definitely recommended icing. They provided Elasto-gel ice mitts and foot covers to me during each Taxol infusion. The hand mitts did not stay cold for the entire hour the Taxol was going in. I bought some long narrow gel packs and made some fleece mitts. I put 2 of the frozen gel packs in each mitt. When the mitts the infusion center provided weren't cold anymore, I would switch to the ones I brought. I would just slide my hand in between the 2 packs inside. It worked great. I am happy to say that I did not get one bit of neuropathy and no nail changes. I'm a believer in icing.

  • aterry
    aterry Member Posts: 142
    edited January 2017

    Thanks for the helpful reply seq24. I believe others (I apologize for not remembering who) have also iced in between infusions. I'm going to ask more questions during my next infusion on Wednesday. seq24, it made me laugh that you calculated how many hours you've spent in the chair.

  • lovesgreenthings
    lovesgreenthings Member Posts: 99
    edited January 2017

    seq24, thanks for the icing tips. Can you share what the gel pack looked like, what brand, etc. I like the idea of the fleece mits too, did you just buy fabric and stich them together? Thanks for the great idea! And so happy you have no issues. Yea!!


    Anne

  • seq24
    seq24 Member Posts: 451
    edited January 2017

    aterry--LOL! That's me! I always figure stuff like that out. Don't even know why I do it, especially for chemo. I bet everyone who did AC/Taxol will has similar "statistics". LOL.

    lovesgreenthings--you're welcome! First, here are the links to the exact cold mitts and foot covers my infusion center uses:

    https://www.amazon.com/Elasto-Gel-Therapy-Mitten-1...=sr_1_16_a_it?ie=UTF8&qid=1485734681&sr=8-16&keywords=elasto+gel

    https://www.amazon.com/Elasto-Hypothermia-slippers...=sr_1_2_a_it?ie=UTF8&qid=1485735307&sr=8-2&keywords=elasto+gel+slippers (looks like these are not available)


    As for the mitts I made, I bought these gel packs:

    https://www.amazon.com/gp/product/B0006GE79I/ref=oh_aui_search_detailpage?ie=UTF8&psc=1 (they come with the white cover for each one). I bought 2 packages of these for a total of 4 gel packs.

    I purchased fleece off of the remnant shelf at the fabric store. It cost me 60 cents (LOL). I used an oven mitt as my pattern then made it a little bit wider and longer to accommodate 2 gel packs each and sewed them together. I made these without the thumb because I wasn't sure how to keep that part cold. I kept everything in the freezer and put them in a little cooler bag when I went to chemo each week. After the ones they provided were not cold anymore, I switched to these. 2 gel packs per mitt and I just slid my hand in between them. The foot covers they had stayed plenty cold, but I bet if your center does not have those, you could get a pair of men's size slipper socks and use the same gel packs to make your own. A friend of mine just took gallon size bags full of ice to her treatments and put one under and on top of her feet then kept another one in her lap and grasped it with her hands during infusion. (with my luck it would leak all over the place if I did that. LOL) Here are some photos of the ones I made. They worked great.

    imageimageimageimage


  • kdtheatre
    kdtheatre Member Posts: 145
    edited January 2017

    Diana-area you doing radiation a second time? I'm confused by your signature/footnote info. Is the diagnosis a new one, or from 2013?

  • Dianarose
    Dianarose Member Posts: 1,951
    edited January 2017

    kdheatre- new diagnosis. Third round. No radiation because it's all in my abdomen now with a spot on my spine as well. I did radiation to both breasts already

  • farmerjo
    farmerjo Member Posts: 239
    edited January 2017

    I had a lot of swelling..gained 14 lbs. I am now 10 weeks PFC and my weight has returned to normal. Yay!

    Nayda985 - I guess it depends on the surgery. I had a full node dissection and I was back to normal the following day. It took a month following my mastectomy.

  • nayda985
    nayda985 Member Posts: 270
    edited January 2017

    yep figured it may be a month or so

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited January 2017

    Can Taxol elevate glucose level? Mine jumped up from 69 to 165! Anyone has the same expereince?

  • PatinMN
    PatinMN Member Posts: 784
    edited January 2017

    stephilosphy00, I think the steroids given along with taxol are known to have the side effect of raising glucose levels. I didn't have that problem; hopefully for you it's just a temporary jump!

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited January 2017

    I haven't gained any weight from chemo. My blood sugar was only 69 a month ago (I have cut out all the sugar from my diet) and now it is 165. I am so worried about it now. :(

  • Oasis2016
    Oasis2016 Member Posts: 26
    edited February 2017

    Tomorrow is my #12 and last Taxol. Can't wait to get it over. My neuropathy worsen after my #8 Taxol and sort of got better after #9. But after #11, the neuropathy is back again (both feet and left hand). This time is worst than #8 week. It hasn't gotten so bad that i couldn't hold my toothbrush, so I am going ahead with the last Taxol tomorrow. For the past 10 infusions, I have not much fatigue and can mostly be out of the house. On the 3rd day, there will be some mild body aches which gave problem to my tissue expander. Other than these, I do not have much S/E. Both the nails on my thumb are blackish but that started when I was still doing the AC. Hair has started growing since Taxol #2, still sparse and the hair is almost an inch long but the front is still bald. Eye brows and lashes are all gone after 7th or 8th weeks of Taxol.

  • vlh
    vlh Member Posts: 773
    edited February 2017

    CONGRATULATIONS on the last Taxol, Oasis, although I'm sorry to hear about the neuropathy.

    Lyn

  • Dianarose
    Dianarose Member Posts: 1,951
    edited February 2017

    Steph-69 is way too low. Should be 80-100. If you ate something before they drew your blood it's going to be higher. I usually have a coffee with cream and sugar and a muffle on the way to chemo and mine is in the 115-130. Normal for what I ate. The low is what you need to worry about. Mine went to 44 once and didn't even know my name lol.

    Oasis- hurray on the last one

  • nayda985
    nayda985 Member Posts: 270
    edited February 2017

    Congrats Oasis on your last Taxol!

  • aterry
    aterry Member Posts: 142
    edited February 2017

    Congratulations, Oasis. Keep us posted regarding how you do with the side effect--whether they improve. I certainly hope so!

  • aterry
    aterry Member Posts: 142
    edited February 2017

    I had my 5th Taxol yesterday. seq24, I tried the icing during the infusion, with my fingers in an ice bath and an ice pack (ice in a bag that the nurses concocted) wrapped around my toes. When I got home I repeated icing, using an ice bath and alternating my toes (doing one foot at a time and resting the other, same with fingers). I'm doing my first icing for today, right now, with a bowl of ice water under my desk. It seemed to help so thanks seq24 (and others) for encouraging this approach. I'm also rereading posts about icing and looking up ice packs--I already have several in the freezer because DD is a dancer. I should try to adapt those before buying new. ;-) The ACEReusable Cold Compress looked the best, though. Easy to use and not expensive.

    My book for this week was "Lab Girl" by Hope Jahren. I highly recommend it. It is a wonderful book. My MO noticed that I was reading it and she said she's going to get a copy. Last week I read "The Civil Wars of Julia Ward Howe" by Elaine Showalter. It is a biography of the woman who wrote the lyrics for The Battle Hymn of the Republic. It illuminates the role of women in private and social life during the Civil War period. I enjoyed learning the history but it doesn't have broad appeal. I donated it to the book selection that my clinic keeps in the waiting room, I hope someone else likes history.

  • seq24
    seq24 Member Posts: 451
    edited February 2017

    aterry--you're very welcome. I'm so glad the icing is helping you. I was worried when I started doing it that it would prevent the chemo from being effective. After all, chemo is supposed to get to all parts of our bodies. The nurse assured me that although it does resstrict the blood flow to hands and feet, the chemo is still getting there too and not to worry. I thought the icing was pretty uncomfortable, but I am glad I did it and that it worked. I hope you get the same great results.

  • stephilosphy00
    stephilosphy00 Member Posts: 161
    edited February 2017

    I will have my last Taxol tomorrow! Overall Taxol is pretty uneventful except for the elevation of my blood sugar which causes my concern. Hopefully I will start DD A/C next week.

  • vlh
    vlh Member Posts: 773
    edited February 2017

    Wahoo,

    Without scrolling through multiple pages on the topic, are others struggling with an extreme feeling of being "zombified' / disconnected? I tried a subject search, but wasn't finding threads on topic. I had my 6th Taxol Tuesday (after 4 AC) and feel like my brain is barely functioning today. I have severe Fibromyalgia so have dealt with brain fog for years, but this is like the fog on steroids, ironic since I get steroids with my chemo. I've had this to a lesser extent in past weeks, but feel totally out of it today. Just writing this note feels like a huge accomplishment.

    Lyn

  • aterry
    aterry Member Posts: 142
    edited February 2017

    VLH, Like you, I've had the feeling of disconnectedness the whole time I've been on chemo. First with AC and I'd hoped it would lift when I switched to Taxol but it has not. I feel foggy and find it hard to concentrate on any task that is not routine (l can load the dishwasher but can't write letters or drive). Quite a few people have commented on this.

  • kdtheatre
    kdtheatre Member Posts: 145
    edited February 2017

    definite chemo fog here, that has gotten worse through the 5 months.

    So I thought I was going in for Taxol#11 yesterday, but apparently I don't know how to count...as it was #12 and I'm officially done with Taxol now! Hair started with the fuzz regrowth about a week ago, nails are still suspicious looking, eyebrows still gone, eyelashes started growing back a week or so ago, neuropathy is still slight in fingers/toes, gut/diarrhea issues continue, but overall I got through 5 months of chemo (first was AC for 2 months).

    Now just continue Herceptin every three weeks through November 2017, get my rad tattoos on 2/21 & expect to start rads the following week. Have that daily for 6 weeks...and truly dreading it. Not sure why as I know it will be easy (relatively speaking) than the chemo. In the midst of switching to a new onc Dr (#3), so not sure when I start hormonal treatment.

    [i reposted this in the 3 boards I'm on-so apologies to those who have already read elsewhere 😜

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