December 2012 chemo group

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  • sophiafred78
    sophiafred78 Member Posts: 91
    edited January 2013

    Nicole503 - I think that this thread is so great because we can ask anything and say everything we want. Smile Where else can we do that?

    So my hair (all of it, head and "down there") is still strong. I notice a few more hairs falling from my head when I brush it, but still not much more than usual. And I'm in the begining of day 16 (counting the infusion day as day 1). So the 14 day mark is not set in stone, I guess.

    I'm "ok" with the hair loss, what really bothers me is having to wait so much without my left breast. I didn't even have the TE placed, it was delayed till after chemo. And then I'll have to wait 4 to 6 months to replace it with an implant. And then the nipple! It's too long. Sometimes I feel my life is "suspended" until I have my breast again, dating is completely out of question for me. For those of you who have husbands and boyfriends, it must be difficult, no mather how understanding and strong and supportive they are, but starting a NEW relashionship with one breast missing, I think it's impossible. I'm celibate for 2013. Yeah! Yell This is one good example of stuff I can only discuss with you guys, no one around me could ever understand this.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Nicole~I imagine that would be very difficult to start a new relationship under the circumstances, but there really are some incredible men out there. You might really be surprised. Don't put yourself in a box for all of 2013. The best relationships are built on friendship, laughter, and trust. Have fun with friends and others and see how it goes.



    Blessings

    Paula

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    When I had my BMX back in 2000, I remember thinking thinking those exact words "this is so barbaric". I couldn't believe that in the age of modern medicine the only thing they could do was amputate your breast(s)! Here we are 12 years later and although there are more targeted therapies the protocal is still the same - amputate, poison and radiate! I surely do hope that there will truly be a push to find a cure, a prevention or a treatment that will help preserve not only our breasts, but our dignity and our long term quality of life without the debilitating side effects.

    Hair post tx 3 - I still have some stubble on my head, though very sparse, my arm hair and pubes have thinned, I no longer have to shave under my arms, but there is still some persistant stubble on my legs (which I am too lazy to shave). My brows and lashes are hanging in there.

    Sophia - I think many of us feel like our lives are "suspended" right now while we wait to see if the chemo is working, wait to see what the next scans show, wait to have surgery or rads. Hopefully by the end of 2013 we will all be healthier, stronger and cancer free!

    I wish I felt comfortable go out more, but the flu is so bad here I really do not want to risk getting sick. I did have the flu shot but still I would rather not deal with that on top of everything else!

  • FriendGwen
    FriendGwen Member Posts: 177
    edited January 2013

    Speaking of the flu shot my MO gave me the go ahead to get one. I had assumed once I was having chemo I couldn't get it. So on Friday I got the shot.



    Off to the Visionary Arts Museum in Baltimore with the family this morning.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Bren~You are truly amazing! I see by your profile at the bottom, that you have been doing this since 2000, yet you have an incredible attitude. I also see by the scripture that is part of your signature, that you're a believer.

    I can't imagine for one minute, trying to navigate this journey without my trust in The Lord. He's the reason I've been able to go through all of this without panic. I have an amazing peace.



    Blessings

    Paula

  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2013

    Amen Paula!! I can't count how many times I've cried out to God during these last few months. The comfort and peace I've received from the Holy Spirit has been amazing. This whole cancer deal has helped me redefine/remember my purpose for being here! The song "10,000 Reasons" by Matt Redman is one that's given me much encouragement since my diagnosis. This has also opened my eyes to a whole new way of being able to serve others who are hurting or in need.



    SophiaFred,I'm with you on the delayed reconstruction! I'm married and my hubby has been beyond supportive but I still feel unattractive without my breasts. It's an internal thing I have to work on, not being defined by my appearance (breasts, hair). Of course, I see how being boobless might impact one's dating life. But we're here for you to vent and share!! Who knows, maybe 2013 will bring you a nice surprise in the dating dept....such as a guy who could care less about the bra size because he's a butt man ;)

  • sophiafred78
    sophiafred78 Member Posts: 91
    edited January 2013

    "... a butt man" Laughing LOL!

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Paula - I do have an incredible peace about the whole situation. And I am truly thankful for everyday of the 12 years I had in between diagnosis. I really did live a very normal life as I was supposedly "cancer free" all that time. Since my risk of reccurance was 1-2%, I know that even in this God had His hand and He has a purpose for allowing me to go through this again. Now I just have to trust Him for whatever the next steps of tx will be.

    Steiner - you are absolutely right, it does open doors to be able to talk to, sympathize and minister to others in a special way.

    Sophia - there are some wonderful men out there who are interested in more than whether you have one boob or two :) You never know Wink

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Steiner~OMGoodness! 10,000 Reasons is one of my very favorite songs! It does soothe my soul. I played it at my beloved aunt's funeral in June.



    I hate that I had to miss church today. I got some kind of bug during my nadir period. I even went to church a few days after mastectomy. This is a bummer.



    I hope you're all having a good day.



    Blessing

    Paula

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    sophia, if you do meet someone in 2013, he will be very special and not just a fling, that's something to be excited about!



    Im also at the start of day 16, my southern hair has gone further south, mostly down the drain, and my head hair is hanging on, though I have an appt with my hairdresser, who had chemo a year ago for BC, to buzz it this morning. Not sure if I should just go anyway, it is coming out as I check it with my fingers...

  • sophiafred78
    sophiafred78 Member Posts: 91
    edited January 2013

    Kiwikid - the anticipation is the worst, isn't it? My day 17 is finishing and still no sign of hair falling, and I'm taking showers, not baths. They must have given me some placebo...

  • PeggySull
    PeggySull Member Posts: 686
    edited January 2013

    I just returned from a visit with my grandson, and I too want my old life back! This dense dose chemo has feels like a full-time job. Out of 14 days between treatments I have 3 good days before the chemo and SEs start all over again.



    On a more positive note, tomorrow is my last AC treatment! I hear that my next 4 rounds of taxol will be easier and I sure hope so!



    I told my grown daughter today that I have decided on a double mastectomy and reconstruction in part because I can't go through this again. She was appalled. But the recurrence rate in the first 3 years for triple negative is too high and my cancer was so difficult to detect that I don't always want to worry with every mammogram that they've missed it and won't catch it until...in any case, I' m willing to trade a fairly painful and longer-term recovery from the BMX with recon than the longer term worry. Very personal choice for all of us.



    Anyway, back to the positive, after chemo and SEs in the next ten days I will be through with AC. Yeah!!!



    Peggy

  • bcoct
    bcoct Member Posts: 28
    edited January 2013

    cute!  My kitten Jasmine loves bouncing around and she loves bottle caps from all

    the water that I drink, friend Gwen.  She loses them under the couch at times.  I try to

    walk but been in the 30s a bit toooo cold for me.  Took steriods earlier and stomach gurgling...

    ugh.   Its all part of this chemo prep...gotta do it and thank goodness not many more to go.

  • FriendGwen
    FriendGwen Member Posts: 177
    edited January 2013

    Peggy - FWIW I had a double mastectomy with immediate reconstruction (implants no tissue expanders as I stayed with the same size) and I had no problems physically or emotionally. I was back at work in under two weeks. I had a tightness in my breasts for about six weeks but then it was fine. I hope this helps!

    Bcoct - cats crack me up!!

  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited January 2013

    Hi all, I have been missing in action....as I was traveling last week and then fighting a cold. I am better now buy slept a lot this weekend and wish I would have gotten more done before round 3 on Wednesday. I hope everyone is doing ok!



    Question....I am starting round three this week and have about 30% of my hair...do most of you have some hair left?.



    Hugs to all!

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Runner Sorry you are battling a cold. Not fun. I just had tx 3 last week and only have a little bit of sparse stubble left on my head ~think baby ostrich :) Of course my hair was thin and fine to begin with so I may not be the best one to compare to. I do notice that it is still coming out but at a much slower rate.

  • tracyleigh
    tracyleigh Member Posts: 9
    edited January 2013

    Hey, all.  My participation here has been so sparse that I almost didn't write, but I have some thoughts on a few things mentioned and figured that, if it might be helpful to anyone, then I should contribute.

    I was dealing with prolonged nausea too and talked to my MO's awesome nurse about it last week.  She said that nausea shouldn't be an issue past a few days out from tx, so beyond that, it's likely heartburn/indigestion.  She suggested that I start doing Pepcid 2xday instead of the 1xday that I was doing, and it totally did the trick.  (The chemo drugs kinda scrape the inside of your stomach raw - it's lined with the fast-growing cells that chemo targets - so it gets aggravated easily until it can bounce back.)  Also, for tx day and the couple of days after, I found that it's imperative to never really get hungry, but to keep something on my stomach all the time.

    duckiedee, I also dealt with constipation a lot after my first tx.  I finally started taking dulcosate sodium as my nurse suggested around day 4, but because I hadn't been on top of it, it took several days of taking the medicine, eating a lot of fiber and drinking a lot of water to get back to normal.  It was miserable.  The second time around, I did dulcosate sodium, 2 pills twice a day, starting the morning of tx, and everything was perfect.

    Finally, Nicole503, my hair "down there" was the first to go. The hair on my head soon followed.  I was looking forward to losing the hair on my legs, but had to shave it to make it finally go away.  And I don't think it's TMI - we're all dealing with it, so we may as well talk about it!

    Final AC tx on Wednesday!!  Now that everything tastes the way it should, my challenge is to NOT spend these last couple of feel-good days eating constantly and badly...

  • tracyleigh
    tracyleigh Member Posts: 9
    edited January 2013

    Oh, and Bren58, I love the baby ostrich visual - that's me, too! Laughing

  • powermom
    powermom Member Posts: 195
    edited January 2013

    Runner girl, Yes, I still have about the same amount of hair as you. Wondering if it will let go or stay straggly. Did you have the breakouts on your scalp? Any tips on how to get rid of it?



    Tracy - great tips on the digestive tract issue. Thanks.

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    TracyLeigh - I too suffers from the heartburn raw stomach issue and am on Prevacid - same type of med as prilosec !

    Regarding hair - still have most down there ... But up top since I had the pixie cut and bleach job - it far really damaged so is coming out profusely in the shower . Oh well - looking forward to wearinf my new wig at the office today .

    Hope everyone has a good day !

    Sandy

  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited January 2013

    Powermom - i did have some irritation and breakouts on my scalp! What I did was change to using Johnson and Johnson's Baby shampoo and then putting on hydrocortisone cream...it did the trick.  I also make sure to wash my scalp after exercising or wearing a hat for an extended period of time - even if it means washing 2x per day.  It seems to help.

    Ok my question for all of you is....how do you deal with the fogginess from the drugs?  I feel so out of it Days 3-6....i am almost scared to have chemo again because of it.  I am super sensitive to drugs and hate feeling this way.  I only took claritin and the steroids last time (besides what they give you at chemo - benedryl, steroids, anti-nausea).  I didn't take any anti-nausea medicine last time (knock on wood).  Is there anything I can do to not feel this way?  What is causing it?  The steroids? Chemo? Claritin?

    Thanks!

  • Nicole503
    Nicole503 Member Posts: 295
    edited January 2013

    I am so grateful that I was able to arrange my work schedule to take 4 days off after Round 2 of AC.  Today is day 4 and I feel like crappola.  I wonder if the steroids leaving my system are as much to blame as the chemo itself?  I don't want to eat or drink but am forcing myself to do both because I think it will help get both the chemo and the nausea meds out of my system.  The SE's this round definitely feel worse than Round 1 and that makes me nervous for Rounds 3 & 4.

    On the bright side, I get to be home alone in my quiet house with my cats, watching snow flurries outside and it is peaceful.  There is a nice peace that comes from just sitting when you feel unwell and I am not someone who has much experience indulging in this.  Now is the time, I guess.

  • Nicole503
    Nicole503 Member Posts: 295
    edited January 2013

    Runnergirl - I hear you about the fogginess.  I won't drive on days 2 - 3 after chemo because I worry that I won't be able to safely navigate complicated traffic situations that require quick thinking and judgement.

    I have begun writing absolutely everything in my day planner and keeping a list on a pad of paper on my kitchen island.  My experience is that it is bad in the few days after chemo (as you describe) but also if I get harried or stressed it gets really bad.  I found myself walking around my kitchen with my car keys in my hand looking desperately for said car keys the day before round 2 because I was running late to drop off kids at school & get to work. 

    Beyond using calendars and lists I don't have any other great strategies but I'm keen to hear what others are doing because this is definitely one of the more challenging aspects of this experience!

  • powermom
    powermom Member Posts: 195
    edited January 2013

    Runner girl, Thanks for the tips on scalp problems.



    Runnergirl and Nicole, Me too on the foggy days after chemo. I don't know, but my guess is that the cause is "all of the above." Add the general discomfort in the gut, and I was not much good at all for that first week after my 2nd TCH. At the other end of the three weeks, I am almost giddy because I feel close to normal and can taste things!



    As far as work goes, I am fortunate that I own the business and can "flex" my hours. However, it is less fortunate that I still have to pay myself, plus someone to take my place at the store. We are in retail, and I frankly wonder how much longer we are going to make it. The past three years have been very rough. Got off on a little tangent there, didn't I.

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    Re Fogginess - I think that's the chemo working.  I have to take percocet to deal with the bone pain so I am super out of it for 5 days solid.  Apparently I have eaten to much cheese on top to meds and had to "work in out" last night.  I was seriously praying to the lord from my toilet. 

    Re Hair - My hair was out of control by day 18 part tx 1, buzzed now and still patchy.  Day 10 I no longer needed to shave my pits.  Day 7 past tx 2 and I still have some very thin pubes.

    I went back to work today (working from home) what a LONG day!  I am really tired now but trying to adjust to not being able to take nap during the day.  Need to go to bed at a more regular time.  I will go on leave every 21 days for 5 days for the time I need off for recovery (tues - mon off).  So happy they are being flexable. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Runner girl..Nicole...Powermom...& jenjen...That fogginess is actually called Chemo Brain. They've done research that's shows on an MRI the difference between the brain normally and the brain on chemo.



    I consider day 1 to be day of chemo, so it's about day 5 the fogginess starts, but its much worse on day 6. I really don't have it after that, but I think it's the worst part of the whole deal.



    I buzzed my hair the day before second AC. Thursday will be 3 weeks, but the stubble is still hanging on. It's certainly not growing either, just sitting there.



    I really dread treatment 3 this Friday. It does seem each one is tougher. This time I got a head cold during my nadir period. It's the worst one I ever had in my life and Girls I'm 62! I've had a lot of head colds in my day. So, please be extra careful.



    Blessings

    Paula

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    I'm going to go back and try to write down how I felt after my first chemo so I know what to expect next week.

    Didn't imagine this annoying pain as my hair falls out. Day 17, I just took the new profile pic, so it's still there but falling fast.

    xx

  • volleymom77
    volleymom77 Member Posts: 92
    edited January 2013

    Chemo brain can so relate, writing down stuff does help, still feel lost alot of the time I saw doc today main tumour is down to 2.5 yeah lymph node is the same it sure does hurt when she pushes on it. I also told her I had appointment to see the surgeon Wednesday can't believe its been two months since dx, but doc said not to since I still have 4 more chemo therapies, then I had a major chemo brain moment, I forgot to tell her my port incision keeps getting a crusty discharge, ugh. I feel this would be more my surgeons issue but I don't want her mad that I do keep the appointment, yet the flu outbreak is so bad I don,t want to go back to the hospital (thats where her office is) I am also upset, because one of my daughters friends was over this weekend and threw-up and I just found out she has the flu ugh!!!!! I need some kind words, I'm going to call in the morning.

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    Hey all,

    I started the baking soda/salt in water rinses the day before chemo. A chemo nurse told me to start before the sores did. I do it at least 3 times a day, trying for 4 but not usually making it. I really try to do it after eating. First chemo was Thursday so we will see.

    Sheryl

  • SherylB
    SherylB Member Posts: 450
    edited January 2013

    tracyleigh,

    you might want to ask the mo or nurse about taking prilosec (omeprazole) instead of pepcid. Prilosec is what's called a proton pump inhibitor means it reduces the amount of acid produced into the stomach, while pepcid is a H2 blocker which means it neutralizes the acid once it's produced. A months worth of prilosec generic at walmart is about 13 dollars and you only have to take one pill a day. Just a thought.

    Sheryl

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