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Cytoxan Taxotere Chemo Ladies- February/March 2013

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Comments

  • Deb-in-LA
    Deb-in-LA Member Posts: 11
    edited September 2013

    Hello all. Thought I would check in as I haven't for a while. I am 2 months and 10 days post chemo. I am really feeling pretty good. Close to normal except for lingering fatigue. Actually who knows if it is as I have CFS and Fibromyalgia and it is no worse than normal.



    Just now getting the duck down. I started on ACT but the Taxotere had to be changed to Taxol because of Toxicity (Hand/Foot Syndrome). Onc said Taxol was especially hard on hair.



    I have started on Arimidex generic about a month ago. I heard all the stories about joint pain which worried me due to my arthritis and Fibro. So far nothing which proves we are all individuals with meds. The only real se I've had is moodiness, sadness and wanting to cry for no reason. That has pretty much gone away now.



    I do have a question? Re lifting nails. I was not as diligent as I should have been about ice. The chemo nurses were not supportive and had never heard of icing. The Taxotere toxicity hit me hard. Eight out of 10 fingernails and two toenails are badly lifted. The Taxol didn't seem to do it for me. They are lifted halfway down. When they grow in will they reattach to the nail bed? Would love to know if my nails will stay this way. They are also sore.



    Best to all who are experiencing se's. My hope is they will be short lived.



    I get my PET scan 9/25. Hoping for good news. Then I just have to decide about reconstruction. Boobs or fake boobs? That is the question. Lol. We have to keep laughing right?

  • indenial
    indenial Member Posts: 125
    edited September 2013

    Deb, most of my nails lifted but they seem to be growing back in normally now. I still have a ridge from each round of chemo that hasn't grown out yet, but the part that separated from the nail bed is nearly completely grown out & gone.

  • lgkgde13
    lgkgde13 Member Posts: 10
    edited September 2013

    I am so frustrated and sick of waiting! Sorry to vent but only feel like you ladies here would understand. I met with MO last week to discuss treatment and she recommended CT due to my high risk Mammaprint. Since I have lung sarcoidosis (found from chest X-ray prior to,mastectomy) she wanted to speak with my pulm doctor to see if CT was ok for me as there is some pulm SE for 10-15%. She also wanted a chest CT for baseline. I did the Pulm function tests by pulm doctor and chest CT as requested by MO. Long story but radiologist noted on of the lung nodules as possible malignancy and the others related to sarcoid. My MO disagrees and believes they are all sarcoid so she wants pulm doctor to review scan before and results of PFT before starting treatment. So I am in holding pattern and just waiting before treatment. It is so frustrating. I just want to get started already and this sarcoidosis is complicating matters. So sorry to vent but I am just tired of this already.

  • ckmoss
    ckmoss Member Posts: 95
    edited September 2013

    lgkgde13- I am soo sorry you have to wait!  I know how frustrating that can be!  Mine kept being put off, because develop infection and seroma..was totally cranky about it..wanted it over and done!  However, with your case, I really think its better that everything is cleared up ref to confusion.  I know chemo for me, and others I have read, has made me very short of breath.  I do not smoke and, until this, have been in good health.  Its just a part of the "chemo-hell".  You might want to bring a completely objective 3rd party doc in to give their opinions.  Chemo is very hard on ones body.  I am praying that you have an answer soon and can get on with it.

    I hope everyone is doing well.  Are SE's real bad?  Today is day 8 for me..3rd one..(one more..yeaaa!) Today is the first day that I have felt "normal".  I got out some yesterday, but back spasms and fatiuge drove me back in. 3rd was worse than the other 2...gave me 2 extra days of SE and, also, had nausea some (compazine nipped that in the bud) and some bone pain..

    Well wishes and hugs sent to all of you going through the "fire" now!

  • lgkgde13
    lgkgde13 Member Posts: 10
    edited September 2013

    Ckmoss- thank you so much for support. I agree with everything you said and glad they are being conservative and looking at the full picture. It is just that I am getting so tired of waiting and the anxiety of just waiting for it to start. Thanks for understanding.



    I am so glad you are feeling good today and happy for you that you have one more to go!

  • JeriGrace
    JeriGrace Member Posts: 35
    edited September 2013

    Ckmoss, I'm experiencing something similar with my third tx. I'm at day 10 and still weak and fatigued. I had more nausea this time also but bone pain was less intense. I just tried to go out to the grocery store and Target but only made it to one. My arms are so weak and I was short of breath for the first time. Now I'm really wondering about how long #4 will knock me down. I feel like I've aged 10 years!

  • Deb-in-LA
    Deb-in-LA Member Posts: 11
    edited September 2013

    Thank you Indenial for the nail info. That helps me a lot to know they will reattach. The dents I can deal with till they grow out.



    Just wanted to say that there was a time during and even after chemo that I thought I would never get my strength back. Just walking from my bedroom to the kitchen was too much of an effort. If it hadn't been for my husband bringing me food I would have lost even more weight.



    Glad to say that I finally did get my strength back and feel normal again. It will happen. Just hang in there.



    Best,

    Deb

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    Hi ladies

    DONE DONE DONE and Done



    Did I say I done ?????

    Roll in day 7. :))))))

    Xxx

  • KBeee
    KBeee Member Posts: 695
    edited September 2013

    Nocompromises: Congrats on being done!!!!!  So happy for you!

    lgkgde: I am so sorry to hear of the delays.  I am not scheduled to begin until next Friday, and even having a date, it seems like the time will not pass quickly enough.  I understand the doctors' cautions, but I do not think they fully comprehend the anxiety that the constant waiting causes.  I am doing 6 rounds of this instead of 4, and it is hard to see the light at the end of the tunnel when we aren't even at the tunnel entrance yet...

    One week from today is my official start date.  Today I have my second "fill" at the PS office.  Monday I see my surgical oncologist for follow up, Tuesday is chemo class (though I have probably learned more here than they will teach me...I am dragging DH along though so he can hear what they have to say), Wednesday is the head shaving festivities (if I can call it that), Thursday I pick up my cousin who is flying in, and Friday is chemo. Wow.  I did get some skull caps in the mail yesterday which I ordered, and I really like them.  I am ordering more.  They got here in 2 days!  I also got notice that one of my wigs has finally shipped.  Yahoo!  So I have 5 more days with hair and 7 more days until chemo. I can do this (repeat a thousand times in my head.....).

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    KBee. You CAN do this and I entirely understand the waiting IS the worst part same as b4 diagnosis and path

    When you go to the chemo class ask all the hard Qs they skip that you have learned on here and do t be in too much of a rush to cut your hair b4 chemo you will still have a good 2 weeks to spare

    Also pretty sure I have read 6 Tx show no difference in efficacy to 4Tx so maybe query with your MO? there might be a 2-3% gain but pretty negligible I believe



    How are you finding the TEs ? And fills. ( be honest ) least they will both match :)))

    Was the prophylactic Mx your choice or surgeons advice ?

    Sorry to ask PM me if you prefer

    Xx

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited September 2013

    NC. Congrats. You made it!



    Kbeee you can do it. Even if you encounter a day when you think you can't.



    Lgk I'm sure they will get this review done in a timely manner. It sounds like they are being thorough and that's good.



    DebinLA thanks for chiming in on the exhaustion. I keep thinking I am so slow to recover that maybe I won't ever be the same.



    When you talk about nails lifting up,what do you mean? My nails have been sore. I have red patches underneath but my thumbnails have a big white area and I wondered if they were detaching there.





  • lgkgde13
    lgkgde13 Member Posts: 10
    edited September 2013

    Nocompromise - Yeah congrats and I too am so happy for you!  I have TEs as well and just had my 5th fill this week.  They bothered me for about 3 weeks after surgery and the first 2 fills sucked but since that it has been OK.  Of course it still feels odd to have it in there and it is very hard but not in any pain.  Even from the fills I dont have to take any meds but again everyone is different or feels different.  I was kinda miserable the first few weeks but prob more so from mastectomy then the TE

    Twohobbies - thanks for thinking of me and agree that I am happy everyone is looking at everything but the anxiety is getting hard to take.

    Kbeee - agree I can't try to be strong and get through it if I haven't even started yet :)  I did rush to get my hair cut short.  My hair was down was pretty long and I wanted to get used to having short hair before I had no hair.   Now that there has been a delay I am kinda kicking myself.  Should have keep my long hair lol.  

    So the pulmonologist called me and said that he agrees with radiologist that the one nodule in the lung looks odd and he wants another 1-2 days to review with his radiology team.  It say be close enough that they can try biopsy.  All of this is so confusing.  I understand that there is potential for this to be malignant but stronger possibility that it is sarcoid as the other nodules they said are.  The terrible part is that since I have sarcoid if they do a PET it will still "light-up".  This is scary not knowing whether this is sarcoid or lung mets....ugh!!! so more waiting....   would the chemo regimen be different if it was lung mets?

  • TwoHobbies
    TwoHobbies Member Posts: 1,532
    edited September 2013

    Lgk sorry you did not get a definitive answer yet. It's my understanding that sometimes it's difficult to tell but if it can be biopsied then you would know for sure. My scans got quite a review too and I choose to believe it is nothing as they concluded but I know my anxiety will be sky high next scan. I think the chemo can be different if it is mets but this is my observation, not true knowledge.

  • KBeee
    KBeee Member Posts: 695
    edited September 2013

    NC - I did ask my MO about TC 4 versus 6.  He ifrst wanted to put me on AC-T and because of my job, I wanted to avoid anthracines if possible.  When I asked about TC, he then said he wanted to discuss a clinical trial they are doing which would compare the AC to TCX6.  I told him to just put me on the TC X6 and I'd skip the trial (because my tumor was 1mm too small to qualify for the trial, they would have had to do more testing anyway to see if I would qualify, which would have delayed things for several more weeks).  I then asked him why TCX6 instead of TC X4.  He said it is just their protocol here, and that there have not been any definitive studies about 4 vs 6.  I had researched it enough to know that 4 is the norm.  I figure I will see how I do and we'll take it as it comes.  If I get horribly sick or have problems, we'll bring up the 4 vs 6 discussion again then!

    I went in with my meeting with my surgical oncologist knowing I wanted a double mastectomy.  I already had a lump biopsied on the "good" side 2 years ago (benign) and since I am 43 and already have cancer in one side, I figured it was only a matter of time, and I wanted to take care of this once and for all right now and not be back in a few years repeating the process...if that makes sense....I wanted to be aggressive.  My breasts were also very dense and a challenge to screen.  I also decided that in 20 years, I did not want one saggy breast and one perky breast...I wanted a matched set.  I was pretty small, so I am hoping when this is all done, maybe they'll be a tiny bit bigger...something good has to come out of all of this. :)

    One of the reasons I am buzzing my hair 2 days before chemo is because I am going to have a margarita or 2 to soften the blow (I drink maybe one or two times a year, so this is not something I normally do).  I know we need to drink a ton of fluids during chemo, but I did not see margaritas on the list, so I figured it would be much safer to do it beforehand. :) I won't drink any alcoholic beverages until probably next summer, so I figured as long as I had to be bald, I was going to have a little fun doing it.  I know that probably doesn't make much sense, but I also will be in a good frame of mind and not feeling "off" from the chemo which will help me cope as well.  This way I can focus my attention and positive energy on staying healthy and dealing with side effects rather than obsessing and getting sick over the loss of my hair (I know myself well enough to know I'd obsess about it to the point of probably making myself vomit).  The guys at work have a whole lot of fun planned for the event, since a lot of them are shaving their heads that night too.  So as much as I hate that it has to happen, I'll take the extra 2 weeks if it means I can make it positive, and I have not been dreading or obsessing about it because I know the guys will keep my sporits up).  My DH and  kids are also looking forward to helping to shave, so it is something they are not dreading either, which is an added bonus.

    Hoping everyone has a good weekend with family and friends, free of side effects.  And I hope Iowa State beats Iowa.

  • indenial
    indenial Member Posts: 125
    edited September 2013

    KBeee, I buzzed my hair super early too (did it as soon as I came home from chemo #1, before I felt icky...) I am really glad I did it so soon because it helped me feel more in control. However, I still kept obsessing about the stubble! So my advice is to shave it right to the scalp, and keep shaving it for the first 2-3 weeks, so you won't really notice the stubble falling out. I wish I had done that. It also would have been more comfortable, no one tells you that it HURTS when your hair falls out!!

  • JeriGrace
    JeriGrace Member Posts: 35
    edited September 2013

    Oh darn, KBeee, I was really starting to like you and now you've ruined it. Go Hawkeyes!!!!



    ; ) love ya girl!



    JeriGrace (University of Iowa alum)

  • lgkgde13
    lgkgde13 Member Posts: 10
    edited September 2013

    Kbeee- I love me some Maragaritas too! I love the idea. Sounds like you have the most wonderful support system around you, so happy for you :).

  • Melrosemelrose
    Melrosemelrose Member Posts: 607
    edited September 2013

    Hair talk.....this is fun.... well not really.  I put one of those polyster sateen pillowcases on my bed pillow so that my short short hair wouldn't get stuck in the fabric like it did when I slept on a regular cotton pillow case.  That may help some of you if you are dealing with hair stubble.  Just glad to hear that each of you is finding her own way to deal with the hair and seem to have plenty of support from the family and friends around you.   I also used a lint roller to pick up random hair that just seemed to be everywhere... on me, my clothes, the furniture, my bed pillow, etc. 

  • bikergirl
    bikergirl Member Posts: 71
    edited September 2013

    Nocompromises-

    Yay!!!! Now you can look forward to a great trip!!! Let us know when you come back!

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    Thanks Bikergirl - I won't be far away

    KBeee - you make perfect sense - on all counts And Go the margaritas!!!







  • KBeee
    KBeee Member Posts: 695
    edited September 2013

    JeriGrace, I do cheer for the Hawkeyes every week except when they play Iowa State or Penn State.  I am a Penn State alum, and am originally from out east.  DH teaches at Iowa State, which is how we landed here (and we love it), so I've become a cyclone fan too.  Most of my friends are Hawkeye fans too, so I do suppor them most weeks :)

    This has been a great weekend so far.  I went out for my first run since my BMX 2.5 weeks ago.  I ran a mile, walked a mile, ran a mile, walked a mile, and ran the last mile.  It felt soooooooooo good!  I came home, showered, got the mail and one of my wigs came in.  It is a little blonder than I thought.  I did order it with blond highlights because I thought it would be a good way to find out if I'd like highlights to cover my gray when this is all said and done.  I think I just need to get used to it.  I put on a wig cap and showed my kids.  They LOVED it!  My youngest told me it was nicer than my real hair!  She speaks her mind (a little too much usually) , so I think it must look OK.  I sent a picture to my DH and son, who aren't home, and both like it!  I definitely am not worried about the hair thing anymore.  I now have several options.  I also have been cutting out clumps of my hair at the base and I am experimenting making myself a headband to wear under a hat...kind of like a halo wig with my own hair.  It is working!  I sewed them on and even when I pull, they don't come out.  Sweet!  If I want the unruly hair look that I usually have, I can just put that on under a hat, and they will all recognize me.  I have no idea how long it will hold up, but it is giving me something to do, and every clump I've been hacking off now, is that much less to shave on Wednesday.  I've been taking it from underneath, so DH had no idea until he saw me sewing today!!!

    I hope everyone is having a fabulous weekend...with minimal side effects.

  • ckmoss
    ckmoss Member Posts: 95
    edited September 2013

    NoCompromise-Yeaaaaaaaaaaaaaaaaaaaaaaaaaa!!!  I got all teary eyed hearing that you are DONE!  This chemo is such horrible stuff to hear that someone has made it to the finsih line...it's just fantastic!!  Now go buy a BIG pair of Mouse Ears and have a blast!

    Jerrigrace-Your post of 9/12 is where I feel today.  My day 10..we def have a bonding thing..as I feel just how you described now..pretty much over the chemo..but so tired. And I def feel extremely unhealthy..was just thinking that today.

    I think Im becoming psychotic with the mood swings..its gorgeous today so thought Id give the house a good cleaning plus windows, so I can get out and TRY to garden tomorrow. One window later..I'm about to die..arms killing me..sweating..however, I did manage to get 2 rooms cleaned..really cleaned ..windows/curtains, etc..but what normally would have taken me about 4 hours has taken me 7 ..lots of breaks and a 4 advil..but in the middle of that..had my music going in a great mood ..this (don't laugh) Olivia Newton John song (Come on Over) came on that I use to listen to when I was young..and it made me feel for a minute how I use to feel at 14..young , healthy. whole life in front of you..so at that point ..bursted into tears..had good cry..then Pinks "Get this party started" came on and I was good to go again..sigh..no more music for me!

    Kbee-I think you are my hero!  You actually RAN?  and  you have a great positive attitude too!  You and I are about the same with the hair..I had my wig bought before my MX and loved it.  Not quite sure how I feel about it now..lol...but at least I get compliments on it.

  • KBeee
    KBeee Member Posts: 695
    edited September 2013

    ckmoss...slow jog might be a more accurate description, but I will still call it a run :). We'll see if I can continue next week after chemo is tossed into the mix. Luckily, I had an uneventful, easy recovery from BMX. Sounds like you got a lot done around your house! Mine is pretty much a mess! I do enjoy listening to music when I clean too!

  • ForMyGranddaughter
    ForMyGranddaughter Member Posts: 39
    edited September 2013

    NoCompromise, congratulations on being done!

    I assisted my hair fall by combing it daily.  If your hair is long enough, you can probably put it in a single braid (this will prevent shedding + hair all over the place).  I still have about 15% of my hair left; I cut the hair because it was just weird, as you can see through it; however, I did not shave it, what's left is about 1/4 inch.  I have completely bald spots, thin spots + spots that have hair.  So far I don't have stubble + my head doesn't hurt.  Part of this experiment is to see if ALL of my hair falls out + when.

    I'm looking forward to my third Nfusion on Friday; then I have 1 more to go!!!

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    Well done FMG on the hair



    KBee for your run/walk/jog. I played golf 3 weeks post Mx ( but I am only lopsided :) )

    Ckmoss on the housework

    I have been painting walks and part of a ceiling and a new doir frame today ( to music) and last night. Feeling a tinsy bit queezy (unusual) so decided to stop and time to take it easy ready for day 4/5 - Sunday newspaper and a cheats roast chicken.

    Good to all for next weeks rounds.

  • ckmoss
    ckmoss Member Posts: 95
    edited September 2013

    Good Morning All!  One of the ladies in my group (surgeries) posted this.  We are on Facebook now..so copied and pasted to share with ya'll.  I think its awesome!  And def hits the nail on the head!

    http://www.huffingtonpost.com/jeff-tomczek/cancer-advice_b_1628266.html?utm_hp_ref=fb&src=sp&comm_ref=falsehat

  • bikergirl
    bikergirl Member Posts: 71
    edited September 2013

    KBee-

    You are awesome! And what a great idea using your own hair-you should patent that idea.

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    Hi Ladies

    Day 4 - blah blah blah feel awful

    Come on already let's get this over with. Cold and wintery and wet wet wet

    :(((((((

  • KBeee
    KBeee Member Posts: 695
    edited September 2013

    NC - I hope, hope, hope you are feeling better today!!!

    Bikergirl - I'm not sure if it'll work, but it'll be fun trying!  It'll probably work for me to wear it once and then it will get horribly tangled, which is pretty much teh story of my hair.

    2 days until shavefest...4 days until chemo.  2 of my coworkers who aren't even on my shift texted me pictures that they shaved their heads today.  They couldn't come Wednesday, so they did it today.  I did not know anyone was doing it other than the guys on my shift.  I work with the most amazing guys in the world, and they are really helping me to keep my head up and have a sense of humor through this all.  I suppose it helps that I work with them night and day, so they are used to seeing me straight out of bed for EMS calls as I am throwing my Medusa hair up into a pony tail...and they are used to seeing me all dirty and gross straight out of fires...so it probably will not be anything for them to see me bald.  It might be an improvement!

  • Nocompromises2013
    Nocompromises2013 Member Posts: 136
    edited September 2013

    KBeeee. Yes we all need a sense of humor and it does matter how bizarre it seems to those on the outside. Your support sounds amazing at the fire station.

    Good luck for both the shave and the first chemo. It is daunting waiting but once you get started it seems more doable. Just watch out for those days 4 and 5. I slept sooo well last night. Might the aches and pains will subside today. Just keep your bowels moving !!!

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