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Weekly Taxol group

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Comments

  • martha323
    martha323 Member Posts: 17
    edited April 2013

    Chris - Great news that Taxol is working. What a relief after your experience with the other tx!! Paula, I haven't had any swelling on Taxol yet, but I definitley retain water (feel bloated and don't pee a lot considering the amount I drink) for two days after Taxol. I'm thinking that it might be the steroid? MO didn't seem too concerned ...

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    Sandy: yes Taxol #3 of 4 is tomorrow. Hoping counts are good so I don't need the shot and hoping my SE's are the same as #2. Still have all my nails, lashes are thinning and I noticed some of my minion hair is coming out...

    Skigirl (Deb): hope you are feeling okay today....sorry about your nails...I wonder if that will happen to me with 4DD of Taxol.

  • Sandy65
    Sandy65 Member Posts: 80
    edited April 2013

    Morwenna,

    Welcome. You are among a wonderful group of ladies here. I am on weekly taxol number 5 tomorrow.

    Soteria,

    Yes, I am having swelling in my calves and face. They say it is due to the steroids. I get dexamethasone day of tx, then prednisone for three days after that.

    Ywheels,

    Your getting there. I think my brows are thinning but lashes are still here, for now anyway. Hoping your tx goes well for you tomorrow.

  • ywheels22
    ywheels22 Member Posts: 74
    edited April 2013

    SAndy: Thanks. It's hard because I have felt really good this last week and I am so afraid #3 and/or 4 will be worse. I am trying to stay positive. Hope you are feeling better.

  • jayjayc
    jayjayc Member Posts: 31
    edited April 2013

    Hi all,

    Well just when you think it's safe...... I had my last weekly taxol exactly four weeks ago, and have been feeling better and better..... then I get up this morning and BAM all of my eyebrows are gone and a lot of my eye lashes... and it's happened since yesterday...... GOOD GRIEF.....

    I mean I'm expecting hair to start coming back not go away.......  I'm right in the middle of radiation (12 of 30) so maybe that contributed......

  • ywheels22
    ywheels22 Member Posts: 74
    edited May 2013

    Jay: I am sorry. I hate hearing it too because I dread the same thing happening to me. I have heard that is what happens. It's just plain cruel. Hopefully they will grow back quick.

  • jayjayc
    jayjayc Member Posts: 31
    edited May 2013

    ywheels,

    Thanks.... and I hope it doesn't happen to you or anyone else.... guess it's just another reminder that we have absolutely no control over this ride (or our own bodies)..... we just need to hold on tight and get off it as soon as possible...

  • Sandy65
    Sandy65 Member Posts: 80
    edited May 2013

    Ywheels,

    Thanks. I stayed home today from work. Still pretty stiff and achy. Feel okay as long as I stay on vicodin. Nurse called and said to take vicodin as prescribed on bottle. Which means every 4 hours..I was hoping not to have to take it that often nut I sure know when that 4 hour mark is up as my body tells me. May get to see MO tomorrow to discuss. I just hope she don't delay my treatments as I want this done with. Hope you have a good night.

    Hi everyone else. Hope you are all doing OK.

    Take care,

    Sandy

  • dltnhm
    dltnhm Member Posts: 420
    edited May 2013

    Re: brows and lashes ...

    Had 4 AC every other week

    3 week break

    12 weekly Taxol

    The little bits of my buzz all over my head fell out after Taxol 2 as did my brows and lashes.

    But... Lashes started popping out in about 10-14 days. Tiny little things sprouted, but came in together.

    Brows took a bit longer - can't recall how long. I'll have to look back. I have pretty pronounced occipital bones so that didn't seem to matter.

    Hair started growing on Taxol - about 4 weeks. Soft and downy.



    Be prepared to possibly lose your lashes 2-3 times. I didn't lose them all the next two cycles, but did lose them - first at 3 mos from 1st time I lost them, then thinned some 4 mos later. Lashes are all on the same growth cycle at first which is why you might lose them twice or more. My thinnest spot was inner upper lashes. But they stopped that. I braced for a thinning in March and April, but it didn't happen.



    Hang in there! Eye pencil was my friend :0)

  • Rosina0015
    Rosina0015 Member Posts: 22
    edited May 2013

    Hello All,



    I had an appt with MO after my AC infusion today. I have one more AC before starting the Taxol.



    She said the nausea isn't as bad on Taxol but it did come with other side effects such as Nuropothy. Grrr!!



    Have many of you experienced this Nuropothy?

  • dltnhm
    dltnhm Member Posts: 420
    edited May 2013

    Rosina -

    I did not get neuropathy and did not take supplements. But many take glutamine and B6 to hopefully ward off neuropathy.



    Are you getting your Taxol dose dense or weekly? Weekly seems to have less incidence of neuropathy.



    Sure some others will chime in.

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited May 2013

    Taxol #5 in the books. The steroids hit me early. I slept with the benadryl for a bit during the infusion and for about a hour after I got home. Then up. I went into the garden and cleaned it up a bit. We went on a quick bike ride. We have a nice park and boardwalk that takes you right down to the lake along the Genessee River. I knew sleeping was going to be a problem so I took an ativan. I believe I got about 6 hrs. More than I am used to so I'll take it.

    I'm starting the glutamine today. I've notices some tingling/numbness/tenderness in my fingertips. Both my big toenails are gone. I laugh because my toes are short and fat to begin with. Now they REALLY look funny with no toenails. I'm going to start with 5 grams a day. I already get 3 grams a day in my protein shake. Increase it slowly until the weird feelings go away. I already take B6/B12 and I also want to start Boitin to encourage those little hairs on my head to grow.

    I got the results of my Vit D2/D3 test back. It's 40. I take 6,000 IU of D3 daily for the last 6 months or so and its still only 40. So, I'm going to add another 1,000 IU daily to try and get it up towards the high normal.

    So, things are pretty much steady with the SEs. I am so ready to be done with this chemo crap. I have 7 more to go and I can ring the chemo bell. I took at that thing every time I am in there. Keep your eye on the prize!

  • Sandy65
    Sandy65 Member Posts: 80
    edited May 2013

    Skigirl,

    Glad things went good for you. I will be heading for my #5 in about an hour. Hope I get some sleep during infusion too. It makes the time go by faster. Hope you have low se's.

    Take care,

    Sandy

  • Sandy65
    Sandy65 Member Posts: 80
    edited May 2013

    Rosina,

    I had neuropathy when I started taxol but it subsided quickly. Mine must have been due to the last of the AC treatment as I have a little now but not bad. I take 50mg of B6 twice a day and that seems to keep most of it at bay. I am taxol weekly. Hope the same for you.

    Take care,

    Sandy

  • PeggySull
    PeggySull Member Posts: 368
    edited May 2013

    Thanks for this info, Paula. I took B6 and L-Glutamine to try to stop neuropathy associated with taxol. I still have the neuropathy but I didn't do the powdered form of L-Glutamine. I will now.



    Thanks

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited May 2013

    I know my swelling isn't associated with steroids, because I haven't taken them since taxol #2. I read online, that swelling is a rare SE of Taxol.



    Paula

  • morwenna
    morwenna Member Posts: 204
    edited May 2013

    Thanks for the welcome Paula!



    I did try to find research on chemo, specifically AC, causing dvt/pe, well before the actual diagnosis was made, as I had my suspicions, but couldn't really find any place that listed it as a possible side effect.



    I also have a high platelet disorder, which carries a risk and which was not being actively treated, just observed, as I was asymptomatic when I saw the hematologist in October, just when I was awaiting my biopsy results!



    When you add up the risk factors: cancer, 2 surgeries, chemo, central venous access, potential blood clotting disorder ...... I am beginning to wonder whether I should not have been on a prophylactic anticoagulant, which could have prevented a potentially fatal thromboembolism. This discussion never took place, and dwelling on it, though pointless, is beginning to upset me!



    I am seeing the hematologist again on May 10, which might be interesting, and see what my long term management will be......

  • morwenna
    morwenna Member Posts: 204
    edited May 2013

    Oops, just saw all the other posts since Paula's! Hi everybody :)



    Re hair: I lost it from the sides mostly with AC, but never completely from the top, which I had to shave, or I'd have had a Mohawk!! At the moment the sides are starting to grow, snowy white fluffy stuff, while the top still has a bit of colour, and its about a quarter inch long. Last week or so though, I feel that some of the top hairs are loosening. My friend told me to stop tugging at them!! :)



    About a month ago, another friend said, "I thought you said you would lose your lashes and brows!" She sounded almost accusing! Well this week I felt like telling her she must be pleased to see that both are now falling out at a rate of knots!!



    Aren't people funny!!!

  • ywheels22
    ywheels22 Member Posts: 74
    edited May 2013

    HI all: MY WBC was 2.17. I have to get the Nuelasta shot tomorrow. I have to admit I am very upset about this. It should be the last time since I have one more taxol in two weeks and this one shot will last past that. But, I am in tears about it. I hate that shot more than the chemo because it just kicks my ass bad. I got a new scrip for Tortdal to go with the vicodin to help manage the pain. Sometimes it just seem things are very unfair.

  • mareluna
    mareluna Member Posts: 275
    edited May 2013

    Hi Everyone,

       I am trying L-Glutamine chews twice a day that I got at GNC. They do not taste bad and I hope it helps my neurapathy.

    Work is going well. I started back 3 weeks ago. And I sleep better cuz the kids tire me out.

    I did and still get swollen ankles and feet. My face was puffy on Taxol too but that has gone down. You could ask onc for lasix to get the fluid  down. I don't hav ethat problem much as long as I don't  eat a lot of salt.

    Have a good evening ladies.

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited May 2013

    the glutanmine chews... whats the # of grams in them? I've not seen the chew before.

  • Sandy65
    Sandy65 Member Posts: 80
    edited May 2013

    Ywheels,

    Sorry you have to do the shot. No, it isn't fair. I hope this one treats you better with lower se's. You got through it before and can do it again. Keep your chin up. You are almost there girl!!!

    Take care,

    Sandy

  • Skigirl72
    Skigirl72 Member Posts: 180
    edited May 2013

    Ywheels- Hang in there. Last time for the shot! One TX to go and then you can yell PFC from the tops of the trees!!! Hang tough ny friend!

  • mareluna
    mareluna Member Posts: 275
    edited May 2013

    http://www.gnc.com/product/index.jsp?productId=4217775&clickId=603875052&affiliateCustomId=&affiliateId=33025

    Look it up. L_Gluatamine chews

  • caitlin61
    caitlin61 Member Posts: 33
    edited May 2013

    Ywheels, very sorry to hear you had to get Neulasta shot - really hope it won't be as bad for you this time. Had my 3rd of 4 dose dense taxol today - RBCs were still slightly low, but WBCs holding steady. So ready for this phase to be over (but then it's on to radiation)!

  • ywheels22
    ywheels22 Member Posts: 74
    edited May 2013

    Caitlin, Debbie (skigirl) and Sandy: Thank you. Got the shot at 10 this morning and so far not feeling anything...yet. I went for a walk with my girlfriend, 4 miles with 20 lb weighted vest. Felt great. Did a bit of gardening as well. I know tomorrow will be my down day and I just have to accept it, rest and just chill. I just hope Saturday and Sunday are a bit better, even with this shot. In 13 days I will have my last tx with no shot. It can't come fast enough. Glad you all are doing well.

  • Sandy65
    Sandy65 Member Posts: 80
    edited May 2013

    Ywheels,

    Glad things are going in so far. Hope they continue to go well for you. They reduced my taxol dose by 25% yesterday due to the pain I am having. I was not happy about it but then they said they would rather reduce it than stop it or delay it. So that made me understand why they are doing it. My counts were good so that was positive. They are thinking my pain will just keep getting worse as it goes. I still have 7 more to go. At this rate, I will be off work by that time. I don't think I will have much choice. The vicodin and Ib are helping a lot though. Hope you are still doing okay this evening.



    Thinking of you all!

    Take care,

    Sandy

  • adagio
    adagio Member Posts: 713
    edited May 2013

    ywheels- good luck with the Neulasta shot. Have you tried the Claritin? It helped me a lot. My oncologist insisted that I take the Neulasta throughout my whole chemo regime - even after my final taxol!! She felt that the risk of infection and hospitalization would be worse for me to deal with than the pain from the Neulasta. You will be finished chemo before you know it. One more taxol to go - good for you. 

  • lmcclure4477
    lmcclure4477 Member Posts: 37
    edited May 2013

    Ok I am freaking out right now. So far I had two dose dense taxol treatments and I am due for #3 on Monday. This morning I woke up with an itchy rash on my neck. Can taxol cause a rash? Also I was out in the sun with my daughter yesterday so could it be from the sun? I see my MO this morning for a check-up so I will show him. Here goes the start of every little symptom causing me to stress!!

  • [Deleted User]
    [Deleted User] Member Posts: 942
    edited May 2013

    lmcclure~~Yes Taxol can cause a rash. I get a rash on my arms between elbows & wrists, but it doesn't itch or burn. It may be there for several hours then fade away and come back a day or so later.



    Also, we are supposed to be very mindful of the sun while on chemo. USE SUNSCREEN!!! What you would normally get being in the sun for 30 minutes is multiplied when on chemo, but do talk to your onc.



    Blessings

    Paula

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