Taxotere/Cytoxan starting February 2012.

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  • Neli143727
    Neli143727 Member Posts: 86
    edited February 2012

    Hugs to everyone who commented on my difficulties post treatment!

    Hugs to all the new ladies!

    Hugs to all of you who checked in today!

    I appreciate you all!

    Mom2JJ I am in Charlottesville.

    Today is day 7 post treatment. I woke up in the middle of the night with burning belly sensation and nausea. Took Ativan and soon nausea lessened and I went to bed. Woke up in the morning with burning belly, chest, throat and mouth and tongue so painful that I could hardly speak. I can only drink with a straw now. For lunch I had chickpeas in a blender. I cried a little then called MO. The answering service could barely understand me. MO called in Oxycodone 5 mg, and Lidocaine mouth wash. Told me to stop taking Ibuprofen or Tylenol because it can farther erode the gut. (I was taking it for bone pain and head ache).  Also got Biotene tooth paste and Biotene gel that I can apply inside the mouth. New pimples sprouting @ face, chest, neck and back. I am beginning to feel close to Frankenstein. MO said he will adjust TC dose and add more GI protective meds prior to treatment. Yell

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  • Gayle56
    Gayle56 Member Posts: 277
    edited February 2012

    Firstcall - glad you are doing better now and I agree itis best to stay away from the germs.

    Neli -  I have been using the Biotene toothpaste since Day 1 as well as the mouthwash - so far it has kept me from having an issue.

    Back for TX #3 on Tuesday.  I am not looking foward to it since this week I felt so good. 

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  • Bern51
    Bern51 Member Posts: 13
    edited February 2012

    I'm going for treatment 3 of T/C on Thursday, 3/1 and not looking forward to aftermath, got very sick and didn't eat for 6 days after 1st treatment. Got a new anti nausea med for Round 2, called Emend, worked great for nausea but felt like hell for 8 days after Nuelasta. I'm not glad others are having bad SE but am glad I found this site...it seems I only meet people who feel the need to tell me that chemo

    "wasn't that bad" or that they worked the whole time after I say I took short term disability. I'm so glad I found this thread. I bought some baby toothbrushes, they aren't as soft as I thought they would be but are tolerable.

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited February 2012

    Oh Neli - I am so sorry you are experiencing all of these side effects! I hope that the next few days are better for you and your next treatment is not as bad. (hugs)



    Today is day 3 after my first tx and I feel like my head is in a cloud. I've been very lightheaded and have had a vague headache all day. I had my Neulasta shot yesterday, but I have taken the Claritan to combat the bone pain. I am also swishing aloe in my mouth several times a say and using the biotene to prevent the mouth sores - hope it works.



    For those of you who are experiencing the nausea I would highly recommend the Emend - it really does work.



    Rest well everyone!

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  • Neli143727
    Neli143727 Member Posts: 86
    edited February 2012

    Thanks ColdenMom! Sorry about your SE! My head was cloudy and lightheaded too, but it got better. The headache still comes and goes. Did you just have Emend IV prior to treatment or do you take it at home? What type of aloe do you use?

     Hi Bern51! I am glad you found us!

    Thanks Gayle56! I like the Biotene gel a lot. I use it after the toothpaste and the dry mouth wash. The gel is thick and I apply it like a thin coating @ tongue and gums. It is soothing. 

    Can't sleep again: belly ache came back...making a mint tea and hoping for the best.

    Anyone using Melatonin for sleep? Anyone having troubles sleeping these days?

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    Definatley having issues with sleeping!  Hence the post right now.  It comes and goes. I can have a few nights when I'm done by say midnight but last night/morning it was like 5 am but got up around 9:30.  Here I am now like 3:19 am and wide awake.  Mind you I was used to the menapausal insomnia but this is nuts.  I"m not even steroidal right now! Trying not to stress about it. 

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  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited February 2012

    Neli, I take a prescription sleeping pill that's basically melatonin. It's called Rozerem. It works! And it's non-addictive. I had a really bad reaction to Ambien some years ago, after another surgery, so my MO and pharmacist spent some time researching the best sleep aids for me. I've taken it almost every night for 3 months.

    I found that one or two Ativan also  helped me sleep, but the nurses said I couldn't take that long-term because it was addictive. 

    I think almost everyone I've come across on these threads has had sleep problems. Between the hot flashes, night sweats, chemo, body aches, drugs to offset side effects and the general anxiety we all feel, it's no wonder we can't sleep.

    I highly recommend that anyone receiving chemo ask their MO for a sleep aid. I think you'll find MO's quite accommodating in dispensing scripts to help us through this.

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  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited February 2012

    Good Morning Ladies,

    Ca7tko: Welcome! How are you doing?

    WaveWhisperer: Do you still have a fever? Thank you for the info on Rozerem! I am going to ask MO Laughing Do you think this is better than taking Tylenol PM? I try not to take the Tylenol PM evey night. So I'll go every other night  or try and sleep without it. If I don't get sleep one night I make sure I take it the next night.

    lmlola59: How did the cooking go? You will let others know when you are ready!

    firstcall: The hair! Well, it has started coming out quite a bit more. I have a lot of hair so no one can actually tell, but me and my husband (when I show him the pile). It really started Day 11 (Fri.) and progressively more Sat. & Sun. I plan on getting it cut today or tomrrow.

    Bern51: Hopefully, this time around eeverything will go much better for you with the new meds.!

    ColdenMom: How's the headache?

    Neli: Hope you were able to get some more sleep.

    Myleftboob: I've had days like that as well and steroids weren't the issue either. I use Tylenol PM, but I'm going to look into what WaveWhisperer mentioned, Rozerem.

    Today I see the Cancer Surgeon and Thurs. I see the Reconstructive surgeon for follow-ups.

    I did Boot Camp this morning and I plan on trying to run today as well.

    Enjoy your days lady,

    Bonnie 

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  • Neli143727
    Neli143727 Member Posts: 86
    edited February 2012

    Myleftboob, today MO said I can take Benadryl 25 mg for sleep.I am going to talk to him about Rozerem.

    Wavewhisper, Thank you so much for recommending Rozerem! Sounds much better then Benadryl.

    Fighter, you are pretty amazing! Still doing Boot camp and able to run! I walk ~ 2 miles every day but really have to push myself to do it and it takes me forever.

    Imola59 I think your 1st treatment is tomorrow? Thinking of you!

    MO said that I have "Mucositis" and "Thrush".  Prescription for Fluconazole is the fix.

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  • silviazara
    silviazara Member Posts: 111
    edited February 2012

    Hello all,

    so I added my treatment dates to the signature line. Would you mind doing it as well? It will make easier to know when to cheer for you and also afterwards to see how far are you after treament especially when you are describing your SEs. 

    Bern 51  - I hear you. Chemo isn't so bad is a stupid statement. And it is only doable, because we have to do it.. or we think we have to do it to save our lives. Good luck with your 3rd treatment.

    My fever is gone and overall I don't feel that bad thanks to antibiotics. Still nauseous. Snacking helps, but nothing tastes good. Or better said, nothing tastes anyhow. Yesterday we went to Thai food to get lunch, very salty, sour and spicy that's all that I can taste. Water, tea taste yuck. I am stuck with milk and juices. 

    I am not confident to wear a wig. I feel funny in it, sort of humiliated like I have to cover myself up with some fake hair. And it's always so windy here too. I like my chemo beanies and hats for now. Or nothing. I really don't want to end up chasing some damn wig around the beach or parking lot. Laughing

    HUGS to ALL and have a good Monday!

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  • lmlola59
    lmlola59 Member Posts: 146
    edited February 2012

    Hi all,

    A-Fighter did manage to whip up enough filling for 3 chicken pies,will come in handy to be able to simply defrost and stick in the pie filling Thanks for asking.

    Nell thanks for the well wishes for tomorrow. 

    Silvazara the wig is not for everyone you need to do what works for you.I believe I will wear mine when i get there but time will tell.Plus I have naturally fine hair so I am sure any little bit will be noticeable unlike you guys with a lot very jealous.  Glad you no longer have a fever last thing anyone wants is a trip to the emergency room.Will attempt to add my dates later this week when I sit down and actually figure them out.

    Have a dentist appointment  this afternoon for a cleaning and was suppose to get my cap put on but she called and it is not shipping till today.I made an appointment for tomorrow but not sure how that will be after my treatment and if  I will be through by 300.I was thinking I want to get it over with and figure I may feel worse the following days as I see many that say they do things right after and feel worse later.

    Of course I will have to run it by the doctor,should be ok just popping it over the other tooth and securing it I think. 

     My bag it packed and I am ready to go tomorrow, but I have to admit as the time ticks by I get a bit more anxious.Pretty sure I will not get a good night sleep as I have been restless since my diagnosis.

    Drinking the water and checking to make sure I have everything I made need for possible SE's.I am a real planner by nature so I will be prepared. 

    Hope you are all feeling well or better

    have a great day 

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  • A_FIGHTER
    A_FIGHTER Member Posts: 109
    edited February 2012

    Hi Ladies,

    Neli: Just an FYI - I spoke to the pharmacist last week about Benadryl and she metioned taking two tabs 25 mg each would be fine as that is the recommended dose for the gel caps. When I tried Benadryl, one tablet did not work for me.  I always tend to try less than regular doseage first. So, try one and if it doesn't work try two. Definitely ask about the Rozerem. I will be too Laughing

    Silviazara: Will do! I think you or someone else had posted how to do this...I will look back so I can add it on

    lmlola59 & Gayle56: Wishing you the best tomorrow! You're in my thoughts/prayers and sending LOTS of positive energy your way!

    lmlola59: Good deal on getting the filling all done! You sound like you are pretty much set for tomorrow! 

    I called every hair place today to get my haircut...LOL...finally got an appt. I had my haircut at 11:30...I was able to get 10 inches cut off therefore I will be able to donate it to Locks of Love Laughing Now, am I happy with the cut..No...but it's all good! My top priority was to be able to donate...the rest of my hair is not going to last long...looking at perhaps this weekend to shave it! I will be wearing beanies, scarves, and/or hats...No wig for me! I just don't want to mess with it. I saw my Cancer Surgeon today and a woman walked in with a wig. She looked beautiful and I probably wouldn't have even known, but she was talking with the nurses and I overheard. At that moment I did think okay well maybe a wig, but went back to okay no wig...LOL

    Cheers Ladies,

    Bonnie 

     

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  • Bern51
    Bern51 Member Posts: 13
    edited February 2012

    Coldenmom, my first and second chemo took about 4.5 hours. The nurses said they infused more slowly to prevent an allergic reaction. They said that the 3rd on Thursday will run at "full speed" so I won't be there as long.

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  • Bern51
    Bern51 Member Posts: 13
    edited February 2012

    @silvia, I got a great wig, it's a Raquel Welch w lace front and I don't think it will blow off if you get the right one. On Saturday we had 59 mile an hour winds and I went out in the wig with no problem. I am going to post a profile pic of me in the wig...I've actually never gotten so any compliments on my "hair"....makes me wonder what I looked like before!

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    A_FIGHTER

    Unfortunatley I can't get Tylenol PM in Canada.  I have Advil PM but it makes me too groggy the next day.

    WaveWhisperer

    I will be asking the MO for a RX for Rozerem.  Just made a note in my blackberry otherwise I will forget

    Neli

    I have Benadryl and will be it tonight for sure.  Have a few appointments lined that I cannot reschedule so good motivation to give it a shot.

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  • firstcall
    firstcall Member Posts: 499
    edited February 2012

    Rozerem and Benadryl.   Benadryl works fine 25 to 50 mg at night.  Two things about benadryl.  First, it works ok for a lot of people, but doesnt work as well after taking it a few nights.  Maybe several nights.  So if you need something ongoing, it probably wont be the best choice long term, but good for the short term.  Second, It is an antihistamine.  Claritin, which many are taking, is also an antihistamine.  Be careful about 'stacking' your antihistamines.  

    Rozerem.  Its a very good sleeping aid.  Its not habit forming.   It works better the longer you take it.  I find that about 75% of patients find it to be a very good sleeping aid.  It will work better after taking it regularly for 2-3 weeks than it will initially.  Great for someone who needs longer term sleeping aid.  You can overlap the benadryl and rozerem.   

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited February 2012

    Hello All -



    Neli - I hope you are having a better evening. I do not take the Emend orally but it was given in the IV, it seems to have worked... Thankfully! My MO did say that if it didn't work he would order the oral Emend. The Aloe is called Ultimate Aloe - I buy it from www.marketamerica.com. It seems to be doing the job.



    Bonnie - the headache is still lingering but overall I'm doing better than yesterday. I do feel weak but a nap helps. Good for you that you are staying so active!!! That is great! Oh and very nice donation locks of love! I'm not a wig person either, I go with the scarves and beanies too. My 8 year old wants to go scarf shopping with me... I've prepared her for my hair falling out and so far she's really positive about it. It is kinda of cute.



    Bern51 - the infusion nurse did say that they'll probably keep the drip slow for next time as well and give me the IV steroids as well as the oral to avoid another reaction. And... I love the hair in your profile pic! It looks great!



    Myleftboob - I have been taking Advil PM but now I'm wondering if that is what has added to my grogginess?? I am going to try the Benedryl tonight to see how it goes.



    Imola59 and Gayle56 - good luck tomorrow!



    Silviasara - I'm so glad that your fever has broke as well!



    Take care,



    Kelly

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  • SherylR
    SherylR Member Posts: 7
    edited February 2012

    Hi Everybody, 

    Just chiming in for the first time here. Thanks for all the encouraging words and sharing of your experiences.

     I just had my 2nd infusion of TC last Friday.  This round feels a lot like the last, although I'm more prepared with my new mantra "medicate early! medicate long!"   

    My experience is similar to those of you who shared that the first two days are ok, but it really takes 10 days to get back up and running again.  The first round I ended up calling in sick for a whole week.  So this time I just took the time off (I work in a pediatric therapy clinic with a gym that is very active work).  Today I got my daughter ready for school and then didn't have the energy to bathe until noon!   

    So cheers to all of you who are wiped out by this crazy way of getting well!  Rest up.

      

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  • lmlola59
    lmlola59 Member Posts: 146
    edited February 2012

    Good luck tommorrow Gayle56 I will be thinking of you

     I have tried to update my profile with the dates I will find out tommorrow if I am correct

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  • silviazara
    silviazara Member Posts: 111
    edited February 2012

    Don't get me wrong about the wigs. I think they look fine and I am happy for everybody who wears them and likes them! I have some and I will get some more mostly for fun dates / evenings out. Other than that, wearing them all day long is not for me and I don't need to be getting compliments on wigs. ;-)  Maybe I will change my mind later on. Cool 

    Bern51 - avatar is small but I am sure you look beautiful! Doesn't the long wig get tangled too much?

    Kelly - thanks! :-)

    Shery - welcome!

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  • silviazara
    silviazara Member Posts: 111
    edited February 2012
    Bonnie - go to My Home - Edit My Profile - scroll down to the last window that says Signature
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  • Gayle56
    Gayle56 Member Posts: 277
    edited February 2012

    Imlola59  Good luck to you tomorrow as well - My oldest daughter is coming along to keep me company tomorrow.

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  • Myleftboob
    Myleftboob Member Posts: 1,469
    edited February 2012

    Just took my Benadryl.  FIngers crossed LOL!  I just realized that this is the first pill I took all day!!  Yay!!

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  • shera
    shera Member Posts: 184
    edited February 2012
    Hi everyone... lots of activity since my last post! My 1st infusion is Wednesday.... holding up the tail-end of the thread here ... last day of Feb.

    momof3, wavewhisperer, mom2jj, kim48 -- thankx for more info regarding claritin. my chemo-nurse hadn't heard of this and told me to use ibuprofen --- maybe claritin is gentler on the stomach. I bought some!
    firstcall - love the detailed info you providd on the meds. trying to remember all of it. you and Fighter are inspiring me (shaming me? :) into making more of a workout effort.
    Bern51 - yeah... I love hearing how others worked through chemo too. im still on short term dis. from UMX with TE 5 weeks ago... and plan to go back part-time after my 1st infusion... when I feel up to it. (lucky its a possibility!)

    welcome sherylr, Marlene, and ca7tko.

    Neli, Silvia, gobucks ... and everyone... glad it seems that SE are improving and thanks for sharing the details... it is just crazy going into infusion #1 having no idea which SE will hit or when. This is one part of the experience that is so hard to explain to fam&friends.

    Thanks to all here I bought my biotene and claritin -among other pre-chemo supplies...and will ask about my MO about Rozerem for sleep.

    I will add my other infusion dates once scheduled. So far... just gotta get thru Wednesday. Doc appts tomorrow & friend cutting my long hair to shoulder/pixie style. Plan on trying to make a "halo" with hair cut off, to use with hats. Will prob get a wig and only wear for certain occasions. We'll see!
    My boyfriend is going with me Wednesday . He downloaded entire season 2 of Modern Family... here we go!

    Grateful to be going through this together with all of you.

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  • Neli143727
    Neli143727 Member Posts: 86
    edited February 2012

    Thanks firstcall! Very informative!

    Bern51, you do look gorgeous!

    Myleftboob, Benadryl worked for me last night! Whether it was the Benadryl or me being very tired....not sure. As an added bonus my crazy chemo pimples and rashes look better this morning.

    Silviazara and Fighter looking at your photos I think you can't go wrong with wig or no wig, hats or shiny heads. You are beautiful!

    ColdenMom, Thank you for the aloe info! I will try it. My lips are like Angelina Jolie's now from the inflammation. (Not in a good way; just size wise)

     Hi SherylR!

    Imola59 and Gayle56 sending you lots of positive thoughts wishes and hugs! Hoping it will be a good day for you!

    Shera, waiting is hard! What got me through is focusing on the present moment. I kept saying to my self "Right now I am safe, not hurting, the sun is shining, and I am comfortable. I will fill only that. What I am going to feel when the infusion day comes is a mystery and I am not there yet." Did not work all the time but this is all I got.

    Whishing everyone a great day!

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  • Neli143727
    Neli143727 Member Posts: 86
    edited February 2012
    ColdenMom is it the Ultimate Aloe® Juice (Natural Flavor) - Single Bottle (16 Servings) for $24.99?
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  • WaveWhisperer
    WaveWhisperer Member Posts: 898
    edited February 2012
    FirstCall, thank you for the information about Benadryl and Rozerem. Some women asked about taking Tylenol PM. My MO said that's a good choice if it's body aches and pains that are keeping us awake. She said what makes this a "PM" is that it contains Benadryl. So I would assume women taking pure Benadryl should be careful about adding Tylenol PM on top of that. Would that be correct?
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  • ColdenMom
    ColdenMom Member Posts: 114
    edited February 2012

    Neli - yes, but there is a flavor too. I buy the strawberry-kiwi it's better than the natural. Glad you found it!

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  • ColdenMom
    ColdenMom Member Posts: 114
    edited February 2012

    http://www.marketamerica.com/sku-1285/strawberry-kiwi-flavor-single_bottle_16_servings.htm



    Neli - here's the link.

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  • firstcall
    firstcall Member Posts: 499
    edited February 2012

    Wavewhisperer -tylenol PM.  yes, this is tylenol with benadryl added.  I don't like combination medications because people end up double dosing, just like you pointed out.  Tylenol PM is ok, if you need both medications, but I think its better to have a bottle of tylenol and a bottle of benadryl, and if you need one or the other or both, take them accordingly.  Otherwise people often take two medications when they only needed one, or inadvertently taking extra benadryl, etc.  

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