Starting Chemo in Nov 2016

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  • chickensandgoats
    chickensandgoats Member Posts: 64
    edited January 2017

    Thanks for the welcome! I am glad to hear that several of you have not had to use the Neulasta injector during Taxol. I have been lucky not to have too many side effects, but I am constantly worried that I am going to knock it off or damage it in some way while I am wearing it.

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  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Hi everyone!! I hope we are all feeling pretty good...I think most of us have hit the 1/2 way point now right? or very close to it?

    I start Taxotere on Jan 20th....Who else is going to be on that? or already on that? What kind of SE have you had? I "hear" it should be easier then the AC portion was...I'm hoping that is right!!

    I still struggle with constipation...I can't seem to get a handle on it...I feel like I've tried everything..ugh! but if thats the worst SE I get I can handle it. Monday night my stomach pains were so bad I actually passed out in the bathroom from it. This is "normal" for me, I tend to pass out when I get bad stomach pains/cramps...I have my whole life, so I'm not worried about it...

    I go in on the 9th for my nurse educator appt to learn all about taxotere....start the 20th and have a surgeon appt on the 27th to see what she is thinking as far as my surgery plan, timeline etc.

    Can those of you that had a double mastectomy fill me in on how your recovery was? How long did it take for your to feel "semi normal" I'm thinking I may need to take off a long time from work? I teach..so I am hoping to make it to at least spring break or after before needing to take a long amount of time off....And how long does it take between surgery,and reconstruction? ( I will most likely get implants) I know radiation will be in the middle and I'm not sure how long that will be yet, they haven't give me an amount of time yet.

    Have a great week ladies!! We are fighters!!

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    BG46- recovery time from a mastectomy was quick for me once the dam drain tubes came out. A recliner will be your best option for sleep. Physical therapy is a must too for the cording you will get under your arms and range of motion. I think I was back to work in two weeks but really a week would have bee ok

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  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Dianarose WOW 1 week?? that would be awesome! was that from surgery day until you felt ok? or from drain removal to feeling ok? How soon do they remove the drains? I know nothing LOL We have recliners built into our sectional couch so at least I will have that to sleep in LOL

    Did your dr give you a Rx for physical therapy? I will definiltely ask about that for sure....

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  • Hopfull2
    Hopfull2 Member Posts: 418
    edited January 2017

    hi BG46TN, I'm on taxotere and cytoxan. Next week will be my 4th cycle out of 6. It's not too bad. It's a 30 minute drip if I'm not Mistaken. And you will get pre meds before the drip. My SE are just fatigue for the first 4-6 days. I don't get nausea but take anti nausea meds at home. I don't very have mouth sores but do get dry mouth the first week. I also had a mastectomy and My recovery was no thanks bad . The drains is the worse part and u will have to sleep sitting up a bit. I stayed overnight at the hospital and I was on pain meds the 1st week. Good luc

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  • Pamela23
    Pamela23 Member Posts: 510
    edited January 2017

    BG46--I had my 3rd round of TC last week, I felt I finally got a handle on the constipation this round. I started using a capful of Miralax in my pitcher of water everyday for 5 days starting the night before infusion. It's not a laxative, but a stool softener. Then I took Senekot on night 1 and 3. I stopped taking the anti nausea on day 4 but if I needed it I would have done the senekot again. This allowed me to go to the bathroom every other day and although I wouldn't say it was "normal" for me, it at least was moving!

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  • pmevans50
    pmevans50 Member Posts: 54
    edited January 2017

    Dianarose - Thanks for sharing? Actually, I do mean that. Having it easy can make a person lax and I do not want that knowing it might not be peachy all the way through. I would rather know what's coming.

    thank you!!

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    BG46- I had my drain tubes out in 6 days but everyone is different. It depends on how much is still draining. If there Is still quite a lot you can't get them out. The drain tubes cause a burning pain. Worst part of it all. You will need physical therapy so get the RX ahead of time.

    I had not had to take any nausea Med's until round 7 of Taxol. Hope they don't cause constipation. I have been eating Cherrios every night and didn't even need the stool softener. I did get swollen ankles after first round and have to wear compression socks which I hate.

    Round 8 tomorrow then 4 more to go 👍

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  • aterry
    aterry Member Posts: 290
    edited January 2017

    I had my first Taxol infusion yesterday (Wed 1/4/17). They gave me Dexamethazone and Benadryl as premeds and 2 others that I've forgotten but I'll check and post later. Day two, so far, is uneventful.

    On Tuesday I had an ultra sound. It did not show as much progress and we'd hoped for. There is minimal shrinkage of the tumor. The better news is that the lymph nodes look good. My MO had been considering adding Carboplatin to the Taxol because of the ultrasound results but in my last round of AC I had bruising on my left arm and on the last 2 days I had phlebitis on my right arm. She is holding off on the Carboplatin. I'm grateful for the reprieve from side effects (I gather Carboplatin SEs are closer to AC) but I'm a bit concerned about the lack of shrinkage. My MO said that it is good news that the tumor has not grown and we may see shrinkage from the Taxol. Also, she can add in the Carboplatin later. She did increase the Taxol rounds from 10 to 12.

    Also she is referring me to a geneticist and they may do a full genetics panel. The results of that would not guide the chemo decisions so much as the surgery decisions to follow.

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    Glad the taxol is being good to you so far aterry. I did my first Taxotere (docetaxel) yesterday along with my first Herceptin. So far so good. I have an ultrasound tomorrow to check on a few things. We are getting there....

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  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Leslie, no issues with the taxotere?

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    Not so far BG! I know you start soon...I will keep you updated. I had zero side effects while they gave it to me, so I didn't even get the benedryl. I took my med (steroid) this morning, but I don't have any aches or pains yet. We will see what the day brings!!

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  • Pamela23
    Pamela23 Member Posts: 510
    edited January 2017

    So I just got emailed my blood work from last week's prechemo draw and my liver enzymes are incredibly elevated, My MO didn't mention any concern about it so I looked it up and it's very common during chemo, it's amazing how taxing this is on our livers!! Looking more into it, it's the darn Cytoxan. Hopefully it's only temporary damage. Still so scary!! It's always something.....

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  • amw5
    amw5 Member Posts: 189
    edited January 2017

    Hi Everyone.

    I haven't posted in a while. I hope everyone is doing ok.

    I get my first Taxol (dense dose - biweekly) on Tuesday, January 10.

    (((hugs))) Thinking of everyone..

    ~Marie

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    when I had chemo Wednesday (number 8) instead of giving me nausea Med's through IV I got a long lasting shot. It's similar drug but long lasting. Has made a world of difference. The shot itself really sucks. It's very thick and the nurse has to heat it up first and because of the thickness it's a very large ass needle and goes in slow. But it has been well worth it! Apparently it's expensive too because they waited for insurance approval first. They offered me two weeks off but chose the shot and to comein on Sunday for fluids. With 4 more to go o just want to get it done

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  • Dotter95
    Dotter95 Member Posts: 14
    edited January 2017

    Hi Leslie and Dianarose - if you go to the discussion group for people on TC you will find a lot of info on using Claritin 24 hour to minimize the bone pain from Neupogen and Neulasta. I found that it also minimized the body aches and sinus headaches from the TC. For me, it has been a magic pill! I have now finished chemo and will meet with my RO next week. Hooray!

    Joan

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    Hi Dotter! I am taking claritin...not helping at all today unfortunately. I wish it was.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    My main problem was nause

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  • aterry
    aterry Member Posts: 290
    edited January 2017

    I'm on day 5 of my first round of Taxol. Taxol has been easier than AC, so far, but for the first few days I had a weird sensation of disconnectedness. I felt a little spacey, but w/o the fun one usually associates with that term; I haven't read any other mentions of that sensation. Also I have constipation for the first time since starting chemo, even though everything I eat has fiber. I did, at my MO's suggestion, start L-Glutamine (only 1 gram a day). I think that could be contributing to the constipation so I'll back off until things are moving again.

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  • amw5
    amw5 Member Posts: 189
    edited January 2017

    aterry - Sorry to hear about the constipation. i read folks take L-Glutamine to help prevent neuropathy (and that it works well).

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    Aterry- I always feel out of sorts. I think I start to get a bit better on the off week but then we start the next cycle. I have finished 8 rounds of Taxol. Is anyone else up to that many rounds yet? I did two weeks in a row of A/C plus the Taxol at the same time. Then the sensitivity test showed the A/C was not a benefit. I think I am struggling mentally because I don't know what the plan is after I finish the Taxol which should be around 2/8. Whatever the plan is I am praying that it is something that lets my hair grow back. Tired of the whole bald thing! The new nausea shot has been such a blessing! As much as the shot hurts I want it again this week. I am actually starting to put weight back on. In June I was 134 and got downto 110 and now up to 118 😁. I will be happy to get to 125.

    How is everyone doing today

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    The bone pain from the docetaxel (taxotere) wiped me out the past two days. Still having twinges today, but I think they are managable so far. I took 2 T3's before bed last night and still didn't sleep. Not looking forward to doing this two more times if it gets worse each time.

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  • aterry
    aterry Member Posts: 290
    edited January 2017

    amw5 and Dianarose, The L-Glutamine is indeed intended to help prevent neuropathy and I plan to resume it when I get back into sorts. I feel a bit better today. I would have had a hard time with AC and Taxol at the same time. My Taxols are weekly and I'll be ok if the first 4 days are spacey but I have 3 relatively good days before the next infusion. I hear what you're saying, Dianarose, regarding anxiety about next steps.

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    As silly as this may sound, I've been thinking about when I ring the bell. I have 2 more chemos, but then have to go back to the chemo ward 15 more times over the next year to get my herceptin. Plus, I have radiation to do too. But you know what? This 2nd chemo drug is kicking my butt. It's going to kick my butt 2 more times. I think I deserve to ring that bell to show I managed to kick back against this chemo. And you know what? If there is a bell down on the radiation floor, maybe I'll ring it too, when my radiation is done. One year from now? When I take my last herceptin, and I don't have to show the poor nurses on the chemo floor my face anymore? Yeah, maybe I deserve to ring it then too! So there!

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  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Ha ha you definitely deserve to ring that bell!! I think its customary to ring it after chemo, regardless of if you are doing radiation etc

    I don't think we have a bell at my place :-( its very small....not in a hospital. Its wierd, I"m not even sure who there is getting chemo and who is getting infusions for other things (there seem to be a lot of "older" people there getting iron infusions etc) my place is for oncology and hematology.


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  • BG46TN
    BG46TN Member Posts: 286
    edited January 2017

    Question for those of you doing taxol/taxotere....have you noticed changes in your nails? Are you doing anything to protect or save them? I have been reading a lot about this since I start Taxotere on the 20th..I'm not sure I am going to do the ice packs on my hands/feet since I hate being cold LOL and it seems like no one else in my center does anything like this (we are in a big room) I dunno

    Anyway I met a women through this bc forum and she was messaging me about things she did when she was on taxotere so I thought I would share with all of you (will also work with taxol)


    This is what she said:

    I would advise several things for the Taxotere - paint your nails a dark opaque color the night before chemo. I used navy or a dark gray - didn't want to use black. I also iced fingernails and toes for the entire duration of the T infusion, to prevent lifting of fingernails. If your center does not have ice mitts/booties, use bags of frozen peas, that is what I did. I brought them in a small cooler, and also brought a big insulated tumbler (like Tervis) full of ice chips. I held the ice chips in my mouth during infusion to help with mouth sores. The day after chemo I removed the dark polish and applied a coat of clear nail hardener - like OPI or Sally Hansen. I did this daily for 7 days, then removed it and re-applied. I did this two more times over the remaining two weeks until the next infusion. Nail issues are common with Taxotere and they can be permanent. I did lose a pinky toenail but I think my bag of peas did not reach all the way over! The nail grew back really quickly. It seems like a pain to do all that but I had no discolored anils, no ridges, and no peeling or other issues - it was worth it to me. I also kept my nails very short during chemo.

    I then asked her what the dark color actually did, and she replied:

    Painting with opaque polish keeps light from penetrating the nail bed - a possible factor in nail loss connected to taxane chemo agents.. The repeated coating with hardener keeps them from getting too thin and bendable/breaking/tearing/peeling over the course of months of chemo. Taxotere is a Sanofi-Aventis drug, and I received a little care pack from the manufacturer on the first day of chemo, and one of the items inside was a bottle of OPI nail hardener!


    Pretty interesting and I"m going to try it, it can't hurt right? I have also read that SLATHERING your hands constantly with heavy duty creams, keeping your nails very short and smoothed edges helps a lot....I have already bought Udder Cream to use.

    I also read to wear soft comfortable socks and shoes, limit any friction on your toes/nails (My MO said no running etc) I guess I"m going to have to wear sneakers to work....I'll have to talk to my principal about that LOL

    What have the rest of you heard?? experienced? plan on doing??

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  • Leslie2016
    Leslie2016 Member Posts: 316
    edited January 2017

    BG, I wear running shoes all the time at school. :) Even if you feel you need to dress up more...there are plenty of tennis type shoes out there that look a little "classier".

    My cancer centre gave me the ice gloves to wear while I got my taxotere. I just wore them and had a hot blanket on me at the same time. :) Didn't do anything with my feet. I haven't seen any changes so far, but I think they said something about it being after 2 weeks, or after the 2nd infusion? Anyway, been too busy with my other SE's to worry about it too much.

    I have heard and read of others doing the dark nail polish thing...I personally won't do it for a couple of reasons. One, I'm not one to wear nail polish much in the first place. Two, I'd be afraid of masking the problem...I can't see if my nails are changing colour or lifting if I have them all covered.

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  • Pamela23
    Pamela23 Member Posts: 510
    edited January 2017

    I haven't had problems with my nails at all, I've had 3 Taxotere infusions so far. But I've been taking Nature Made's hair skin and nails for almost 2 years, mainly for my hair but I noticed within weeks how great my nails looked (and I was skeptical that it'd work) so I never stopped taking it. Maybe that's helping them stay so strong?

    I do have to say that I walked a lot one day in low boots and it killed my feet for the next several days. My toes and heals felt like they were on fire--it's been a week and they are just becoming manageable. Next round I'll wear tennis shoes for the weeks following treatment.

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  • Hopfull2
    Hopfull2 Member Posts: 418
    edited January 2017

    hi BG46TN, I'm going on my 4th taxotere tomorrow and yes I do have dark nail beds. My nails grow long and strong but they are getting dark at bottom of nail. I have had them painted dark at each treatment not black but a dark color abs they still turned a little dark. Also my nails hurt.

    Hope you ladies have a great day.

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  • Dianarose
    Dianarose Member Posts: 2,407
    edited January 2017

    I've done 8 rounds of Taxol and used just me regular gel polish and they are fine. Done nothing to toe nails and they are fine. My feet and toes peel but I think that is because they swell after each infusion. Number 9 on Friday 👍. Then my week off. Saw a shrink today and she is putting me on meds for axiety and depression. Can't seem to get it together. Will also help with sleep, appetite and weight gain.

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