Starting Chemo in April 2014

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  • mmtagirl
    mmtagirl Member Posts: 509
    edited September 2014

    Jhondro, it was good to read your post because I was thrown a loop last week from my MO.  I am headed to U of M next week for a radiation consult.  Word on the street since January after my BMX was no need for rads.  Didn't start this journey thinking chemo or rads on the table but there you go.  I read the link from Clarnn  and now am more convinced my next opinion will be rads.  

    3 weeks PFC tomorrow for me and I feel better every day.  Tongue neuropathy persists and still working on fatigue but it is better and I am exercising more and more every day.  Hair on head is slowly appearing.  Like dandelion fuzz!

  • mmtagirl
    mmtagirl Member Posts: 509
    edited September 2014

    Ever, congrats and glad you are doing better!

  • Ddkath70
    Ddkath70 Member Posts: 129
    edited September 2014

    Ever, sounds like great news, glad you're feeling well! 

    I have a hair question for y'all. I am going on 7 weeks PFC and have all kinds of things going on. The back of my hair is really coming in, like you all say about a 1/4 inch. The sides still have white and the top had "sprouts" they never feel out during chemo, but they are sporadic and in between those there is fuzz. It's kind of a hot mess, anyone else have portions growing more than others? I guess I should maybe shave it a little to be even, but I can't bring myself to cut any of it. Lol. 

    -dawn

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited September 2014

    The back of my head has much more normal hair.  I'm 8 weeks pfc today.  But my whole head is starting to look hairy.Almost like a crew cut but not thick enough.  Eyebrows and lashes doing very well.  It's very encouraging and I can't wait to lose the hat forever!

  • Lakegirl1
    Lakegirl1 Member Posts: 316
    edited September 2014

    DdKath70...we are about at the same PFC   I have even fuzz/hair all over.  See photos on Hair Hair Hair.  I've been using  Nioxin and taking Biotin. MO wouldn't let me start Biotin until 1 month post chemo.   I have my exchange scheduled for Oct 21. My goal is to go back to work topless after that surgery.   Did I say I REALLY hate my wig. I have been wearing my running hats everywhere. I just don't care!! I'm tired of the stocking cap all day feeling!!!  Also, my scalp is tender where the dumb wig is on it all day!!!

    I'm still really achy muscle wise...I hope this goes away...it is driving me crazy.   I've been taking the tamoxifen for about a week now. Has anyone had muscle fatigue/achiness with that?  Or...am j just trying to do too much too soon?

  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    It will be two weeks PFC tomorrow but wow am I emotional and exhausted.  Tears galore!  Has anyone else had this?  I wonder if it is my hormones/ovaries trying to kick back in after being in chemopause.  I would seriously not get out of bed at all if I didn't have my daughter.  Today she went to grandma's again because I just can't be a good mom today.  Is it just the post chemo blues?  Yuck!  

  • rosebud77
    rosebud77 Member Posts: 24
    edited September 2014

    Clarm-  Hello-  I have been quietly following this thread but haven't contributed much.  My oncologist made a huge point of warning me that it is quite common to go through depression after chemo is done.  Has something to do with the "fight or flight" syndrome.  We have been putting a whole lot of energy into making appointments, researching options, infusions, etc. etc. and all of a sudden it slows down.  She also pointed out that we aren't going to get the level of support from others at this juncture.    I thought it was kind of pointless to tell me this since I have not been "down" much and have been pretty perky.   HA! ....... At day 10 of my radiation, I sat on the table and cried and cried.  The four technicians were wonderful but they couldn't continue with the treatment until I calmed down because I was so upset....I had just HAD ENOUGH of this shit. I had  lost my eyebrows and lashes six weeks after PFC (very rude)  and I was gaining weight.  Hair wasn't doing anything much either.   Turns out that the head tech just finished chemo two weeks prior herself and really understood.  I've felt better since "losing it", but have occasional blahs on and off.   Meanwhile, hair is better and growing the at about the same rate you ladies are describing in this thread.  Lashes and brows are back, and I have lost a couple of pounds.  I have a pretty significant radiation burn, but it is nothing compared to the chemo and I am getting a huge bunch of energy and ambition back.  I hope you are feeling better soon.  I totally understand.  Thanks for letting me share, and I'm sorry this is so long-winded.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited September 2014

    I don't know the cause but I definitely have what you have.  I WISH I could cry, it would be a release!  But I constantly feel like crying.  I am in a lot of pain and can't walk much because of tendonitis.  I just finished the last antibiotic for my Lyme disease.  I have nightmares and just this sense of dread that I can't shake.

    I don't want to be around people too much because all I do is complain and I'm sick of hearing it myself.

    Thursday i'm flying to New York for a post op with my surgeon at Sloan.  I'm am on the verge of panic about it.

    I can't imagine walking through the airport.  I'm petrified he may find something.  My nerves are totally frayed and I've run out of courage.  An occasional xanax helps if I feel I'm really losing it.  

    It's hard to explain this to anyone, not that it makes a difference.  It's just this feeling that the well has run dry.

    But I have to find more courage...what other choice is there?

    Possible causes?  NO estrogen.  Antibiotics.  Chemo misery.  AI's.  Inactivity.  Boredom.  Fatigue that is so debilitating that there is no motivation to DO anything.  Any other ideas?

    Rosebud, your post came after mine and I just read it.  Yes, no hair!  lol  I study my head every day trying to see more hair than there is.  I hate the bald head.  OTH, it's objective evidence of what is going on inside.

    No denying the trauma when I look at that bald head!

    Wish someone had warned me about the depression.  Thanks for posting.

    Why do we think we are supposed to be happy go lucky at this point?   lol

  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    Thanks rosebud and Timbuktu.  I wish you weren't feeling the same but also glad to be understood.  It helps some.  Hugs and kleenex and maybe a great nap for us all.  

    And a walk tonight.  I know that I need to get out of my house.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited September 2014

    Life is always better...out of the house!

  • SharonDe
    SharonDe Member Posts: 222
    edited September 2014

    It does seem like many of us are going through similar feelings.  Timbuktu - I hear you on your concerns about your check-up.  I fly out on Saturday and will have my first check-up since chemo ended.  Not expecting anything odd, but our minds just go strange places.

    I think the hair issue is symbolic - losing it was one of the early signs of what we were going through.  I just keep telling myself I am lucky it is growing back, but it sure seems to be taking forever and a day to fill in.

  • Timbuktu
    Timbuktu Member Posts: 1,906
    edited September 2014

    Sharon, where are you flying?  I'm not a good flier and I'm feeling lousy and I just can't imagine it.

    Just got back from physical therapy where I got nauseous and exhausted.  I plan on going to New York

    alone but it scares me so!  I keep telling myself not to be such a baby but when you're sick you do feel kind of helpless and like you need someone to care for you.

    I think it's time for a Xanax!

  • SharonDe
    SharonDe Member Posts: 222
    edited September 2014

    Timbuktu - it's even harder when you don't like to fly and are going alone, and also when you aren't excited to get to your destination.  Wishing you a safe trip - deep breaths and know this is something you need to do.

    Flying from Maine to Florida.  A week of doctor/dentist/dermatologist visits, then at least I get to go to Disney World.  We will fly back to Maine before driving back to Florida in December.

  • Ddkath70
    Ddkath70 Member Posts: 129
    edited September 2014

    Timbuktu, great point about the bald head being evidence of what's going on inside. I feel like crying every time I see it. I half joked about covering up the mirrors in the house until it really starts growing. Good luck in NY. Take it slow. 

    clarrn, I was right there with you for a few weeks after chemo ended. Cried and cried at the drop of a hat. Just feeling weak and helpless, worried, and just overall unhappy with the way I look. Bald and fat. It started to subside around week 4, I still feel that way but I don't break down nearly as much. 

    Rosebud, I totally feel the same. I'm on my 6th radiation and I get waves of just being sick of being sick. It is cruel and rude to lose your eyebrows and lashes 6 weeks PFC. I just lost one whole side of my bottom lashes. It looks ridiculous, but I still wear mascara. Lol

    I have an interview on Thursday, and am nervous. Wondering if they are just going to be distracted by my wig and half lashes. I'm still so bald, seems like mine is going much slower than the rest of you. I'm still looking at white fuzz :(

  • Mompv
    Mompv Member Posts: 110
    edited September 2014

    I am glad you all posted about depression. I am having my last DD taxol tomorrow. I feel like I want to cry. I think its because the SE are cumulative and I am dreading the next couple of weeks. I am still in some pain and have numb fingers and feet. Feels like I am walking on balls and my legs feel like dead weights. I already whined on another board and feel guilt about doing it again. I am just exhausted. I tried to work normally and took only treatment day and some 1/2 days off. Looking back that was a mistake, I should have taken more time to rest. So, I am leaving work early today, and am taking at least Monday and Tuesday off next week. Friday I will work for couple hours and thats it!!!! It took me all this time to realize I really needed to take care of myself and not worry so much about work. So, if anyone is lurking out there who is starting chemo soon. TAKE TIME TO REST!!!! Oh and don't be afraid to take any pain meds they give you!

  • jhodro
    jhodro Member Posts: 240
    edited September 2014

    It's funny - we all seem to be on the same page. I am 8 weeks PFC and 20/33 rads. But I am on an emotional roller coaster. I had an interview yesterday since I quit my job in August and was stressed about whether or not they would think I looked 'off' in my wig with stubs for eyelashes and brows. It went fine and I'm pretty sure it wasn't noticed. I had a day a couple weeks back where I couldn't stop crying all through rads too - they were great about it, but I really never have experienced this much emotion over the smallest things. I did get the end of chemo-pause last week, so maybe that was a contributor as well.

    Hugs, ladies, hopefully this too will pass!!!

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited September 2014

    Damn chemicals playing games with everyone.  I spent Monday getting x-rayed for radiation and then cried during rads the entire time.  I am not much of a crier but I had just about had enough of everything.  I feel much better as the week is going on but I am just SICK of everything.  I want to be well and not deal with all of the cancer crap.  I realized a couple weeks ago that I have been bald for at least 1 year out of my 37 years and I am just sick of it.  I want to be well and healthy.  

    As for this week one more radiation treatment and then I will have finished 5 out of 33 treatments.  My mold is a mess as they had my head straight when they did it and now during rads I am turned to the side.  My appetite has finally slowed down and I am not sure if it is rads or the fact that I started back doing T25 (today was day 3) but I will take whatever is working.  I have 10lbs that I would like to go away at least.  I am only 5lbs up from my starting point but before that I was up.  I am hoping that working out and moving will help keep my weight down and deal with the rads SE's.  

    My hair is seeming hopeless.  :(.  I know it will be back but it is taking it's good old time coming in.  

  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    So I started exercising a bit more to help with my "mood"  hopefully.  Now today the radiation tech says I'm not allowed to lose weight while on radiation or it will mess up their measurements.  Grr.  

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited September 2014

    clarrn. I say to heck with them. I am gonna get in a shape beside round while I am doing rads. Exercise makes me feel better and feeling better helps me deal with them. Plus I get checked for alignment  twice a week. So they will just have to fix it. 

  • Funclassygal
    Funclassygal Member Posts: 105
    edited September 2014

    Feeling very confused - Bilateral Mastectomy is what I have been thinking of doing until my surgeon and oncologist explained - Breast cancer patients with bilateral mastectomy don’t have better survival rates. Do I have this major surgery for what I thought was more peace of mind? Is the surgery that bad? Never have been but I know I will be terrible layed up like this. Would really appreciate thoughts and experience from you brave ladies. Thanks! VeraAnn

  • clarrn
    clarrn Member Posts: 557
    edited September 2014

    Jaimieh- I agree.. an extra xray or two can't be so terrible for me at this point!   Did part of a T25 yesterday :)  hope to get through more of it today. .. so out of shape and sore!

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited September 2014

    Verann. Tell us about your stats. That may help and we can explain why we had the surgery we did. 

    Clarrn Great job. A little T25 is better than no T25. I am supposed to abs today as I am following my own calendar because of the rads x-rays. I need to space out Total Body circuit so it's not before x-ray day.  My arms and shoulders hurt after TBC. :)

    So 5 rads down 28 more to go. That seems like forever. 

  • mikishelley
    mikishelley Member Posts: 83
    edited September 2014

    Hello ladies!  I really say that loosely because as I said a long time ago, not having a smart phone kinda kept me out of the loop.  Now I find myself feeling as though I was shunned from my own group because I did not have the ability to pick up my phone a hit reply.  I know in my heart no one meant any harm, but the last time I was here I was called a stalker, and now (just so all of you ladies know) I do not share or even feel welcome.  Just wanted all of you to know that just because someone can not be here every minute of the day does not mean they are not hurting or need support.  Just go way back in this thread and maybe you will see where once I actually existed in this group.  No worries though. I will make it alright without stalking "Your Group" even though we started together. Hope you have fun at your pirate reunion!

  • mikishelley
    mikishelley Member Posts: 83
    edited September 2014

    Cold, Clarn, Linda, Swiss Miss we were all here from the beginning together.

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited September 2014

    mikishelley~ I remember you and I am sorry that someone said something nasty.  I just was hoping you were out feeling great and enjoying life.  I hope you are recovering and doing well.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited September 2014

    Mikishelley, I don't post a lot on this thread but sorry someone called you a stalker.  Please feel free to post. Imhabe not had the same experience.

  • mmtagirl
    mmtagirl Member Posts: 509
    edited September 2014

    Vera Ann, I remember your posts from awhile back but don't remember your stats.  I agree, that would be helpful. Are you done with chemo now? What has been suggested for treatment ?

  • Funclassygal
    Funclassygal Member Posts: 105
    edited September 2014

    Hi Jaimieh, well I have that sneaky one that never showed up on a mam - ILC - 6cm in left breast - a cyst in the right.  I think the way to go is by removing both but I am so scared to go through this and to be so layed up.  But, I guess we do what we need to do.  How bad is it? :(  Thanks, VeraAnn

  • Funclassygal
    Funclassygal Member Posts: 105
    edited September 2014

    Hi mmtagirl, I am going on my 5th out of 12 weekly taxol - already did the 4 A/C. They are telling me that I don't have to do the right and if I do there is not much difference as far as survival.  I have a 6cm in the left breast (shrunk by now of course), ILC - the sneaky one is who got me.  After the surgery, they highly recommend radiation which I am not happy with.  I was not happy with chemo either but I thank God every day that I have done really well with it.  Are you happy with all of your decisions?  It's so hard to really know if you are doing the right thing.  Oh and that pill that I have to take for 10 years also makes me uneasy.  My ONC said only 1% chance of causing something in the uterus.  Just don't know.  Thanks for your help, VeraAnn

  • Jaimieh
    Jaimieh Member Posts: 2,373
    edited September 2014

    VeraAnn. I think the anticipation was worse than the pain. I had about 4 days worth of pain and then I was just tight all over my chest. I had immediate reconstruction (expanders placed) with SNB done at the same time. The SNB caused the most discomfort.  I had a time with implants as my body didn't like them and finally had a free flap done. If I could do over I would have just gone straight to the free flap. 

    I think if I had ILC I would really consider doing the double. What little I know about how it doesn't show up in the Mammo (which is the reason I did the double with IDC it never showed up in a mammogram or MRI) and I heard ILC likes to mirror itself (could be a false piece of info) in your other breast. 

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