March 2012 chemo

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  • Catherine22
    Catherine22 Member Posts: 36
    edited March 2012

    Thanks for the info on the low estrogen & low progesterone, that is unexpected news and good to hear! The link worked for me okay. :)

  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Good luck Margo!  We'll be cheering for you.  Please let us know how it goes!!

    Sorry about the link Karri (and anyone else trying to use it)- I was on my iPad so that may be why.  Try this one.  If you can't just click on it, cut and paste into the address bar.  I did that and it worked.

    http://www.nccn.org/patients/patient_guidelines/breast/index.html

    Shera thanks so much for the instructions.  I never would have even noticed the little tree if you didn't point it out!  Wink

    So I decided to be brave and post some pictures in case it makes the hair loss process easier for anyone else in the various stages. I'm now comfortable enough going commando around the house and may even go walking Saturday like this since I can't figure out a non-dorky sport hat or wrap and I hate being hot when I'm exercising.

     

    And this is me in my new wig. It's kind of high maintenance but I've gotten a lot of compliments on it and last time I wore it I almost even forgot about it by the end of the night.  I think this bald thing will be manageable with all of the available headcovering (or not) choices...

  • Love74
    Love74 Member Posts: 175
    edited March 2012

    Wow masserz - u look great in both pics!!

  • zillamom2
    zillamom2 Member Posts: 28
    edited March 2012

    Masserz, you look great. Im shaving my head tomorrow but dont think I will look as good as you.

  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    You are beautiful - either way - you can totally rock that bald look!! Oh, and I got the link to work - thx!

    Margo - best of luck on your interview!

  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Thanks Love!  I definitely feel more normal in the wig, but I've gotten used to bald too.

     Karri - Definitely look into having your wig thinned.  Be sure it's someone who knows what they are doing though, cuz it can't grow back!  I think I'm going to go back and get some taken out around the face in mine too.  I'm only comfortable wearing it with it pulled back in some way to mellow it out.  Otherwise it's a little overwhelming.

  • MichelleMassey
    MichelleMassey Member Posts: 213
    edited March 2012

    Masserz- you look gorgeous! Hopefully I will look okay when the hair falls out. I'm about to eat some soup and crackers so talk to everyone later!

  • onvacation
    onvacation Member Posts: 1,344
    edited March 2012

    masserz - both are great pics - thanks for sharing! Is the wig similar to your hair pre chemo?  It looks similar to the ones I bought also, I like the idea of pulling it back to tame it down!  I can't even figure out how to load an avatar!  LOL I will work on it this weekend!

  • Love74
    Love74 Member Posts: 175
    edited March 2012

    My wig is that long as well and I find it too puffy around my face. I wear it in a loose ponytail or bun with some wispies pulled out around my face...keeps the tangles away too.



    Today my onc said my wig looked really good. I said 'It can't look that good if you can tell its a wig'..and she said 'no...I know its a wig because I know what drugs you are taking'. I guess that was my first chemo brain moment.

  • CAYH
    CAYH Member Posts: 99
    edited March 2012

    Reporting in, Marchers:

    All went extremely well at my first A/C this morn - took Ondansetron (Zofran) when the saline began, so ~ 1/2 hr before the red devil.  Thankfully, not even a palpitation with that one - amazing how fast it works through your system 'cause I was already peeing red 1 hr after starting it!  And then it really dissapated a lot since that first one.  Forgot to start my ice chips until the Cytoxan started, but kept up with them until it ended.  

    Also have the Companzine tabs & suppositories for backup - will not hesitate to take them if needed on your good advice all. 

    There were 3 tx rooms going & they were hoppin' in each one!  I was in the teeny room with only 7 chairs (the troublemakers?) so that made it easier, I think.  Nurses were great - they even arranged for the clinic nurses to take my bloodwork through my PICC line since I have such lousy veins - normally the lab cannot access the oncology PICC, so this is a real bonus for me!

    No feelings of weirdness yet - am hoping the steroids don't keep me up all night...

    Go to see my wig & have a first fitting tomorrow after I pick up my Neupogen (enough for 10 daily shots) that I start 48 hrs after tx.  They'll be no problem since my youngest son has had Type 1 Diabetes for the past 16 years - he will be MY coach for a change LOL

    Masserz - you look GORGEOUS with or without your tresses!  Was your hair long & blonde before or is this a daring new look?   

    januaryice - did you tell us about your infusion experience or did I miss it?  Once Stilldaddysgirl chimes in, that will mean all us Marchers are on our way now?   

    I was trying to catch up on some more threads here during tx - could have posted coming "live from the chemo lounge" but figured that was too hokey...sure was comforting to feel you all there with me though - thank you Ladies! 

  • Sissydi
    Sissydi Member Posts: 516
    edited March 2012

    I also pull my wig hair back too. For some reason, they add a tonn of hair on the top that looks silly to me, so I pull it back in a clip. Now people have no idea it's a wig!

  • KCB
    KCB Member Posts: 365
    edited March 2012

    Masserz: you look great! Thanks for sharing, it gives me hope that I might be brave enough to handle the bald when it happens.

    Hugs all round.

  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Aw, thanks everyone for the kind words. I mainly wanted to post in hopes that seeing it on someone else would help those who are having trouble seeing themselves in this new way. Other people will see you the way you see me, I promise. If it weren't so cold out tonight, I would have ditched the cap for my walk tonight. I'm dying to see what the neighbors do!



    I think putting the wig up in different ways makes it look more real. People don't really think of wigs as being in clips or ponies, etc. I still want to thin it though so it's easier to deal with. My real hair was blonde and long, but not that long. I also don't always have bangs, but I prefer them (they cover up the forehead creases). I'm planning on shopping for a shorter, fun wig just so I have something easy and different to throw on when I'm feeling really casual. Everyone will know I have a wig, so why not have fun with it.



    Glad to hear others having treatment today did well. Hope it stays that way! They had to slow down my cytoxan today because it started giving me a headache almost immediately. Gave me some pain killers and now I'm fine but we'll see how long it lasts. I also got IV Pepcid, chewable tums and took 300mg of Zantac when I got home and I still have that lingering full, burby feeling. At least this time they don't taste gross! I did manage to eat some eggs and one piece of bacon for dinner tonight. I'm dreading tomorrow since the Neulasta really doesn't like me. We did decide to do more regular IV hydration for the next week to see if we can stave off some of the issues I had last time. I just hope it doesn't trigger another seroma!



    Well I'm off to wash my wig. I'm finding that all the time I save in the shower now that I have no hair to wash or parts to shave is spent on applying more makeup than I ever did before, caring for my scarves and the wig, etc. lol...



    I hope everyone has a good, restful, content night. Hugs and love to all!

  • onvacation
    onvacation Member Posts: 1,344
    edited March 2012

    How often are you washing your wig?  They told me every 10 days or so or when it stops moving!  Thought that was funny!  I'm guessing end of next week I will be wearing the wig.

  • tellie_savalis
    tellie_savalis Member Posts: 121
    edited March 2012

    Masserz- Damn girl!  (I think that sums it up).

  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Kim, I will wash it more often than that...maybe once a week depending on how often I wear it. I have an oily scalp and I can smell it when I'm warm so I'm compulsive about washing anything to do with my hair/head. You should just play it by ear. I think you'll know when you need to. Definitely not every day though...it will fall apart or get really dull.

  • Love74
    Love74 Member Posts: 175
    edited March 2012

    I have been washing mine once a week. Careful with the long wigs in the sink...first time I washed mine it was a big knotted mess! Hold on to the hair when you 'gently' swirl it.

  • Masserz
    Masserz Member Posts: 92
    edited March 2012

    Love, I used a large plastic salad bowl to wash mine to avoid the hair being tangled up by the drain plug. It worked pretty well.

  • shera
    shera Member Posts: 184
    edited March 2012

     

     

    well it turned out the Vaginal cream prescribed for my head was a MISTAKE. Go figure. Its the exact same active ingredients, but the 2% comes as a vaginal cream and it not supposed to be used topically (!!)  and the 1% is a cooling gel. I'd like to ask the PA if she gets sympathy chemo-brain. 

     

    Rant: It took 3 trips to the pharmacy, and several phone calls to both my onc office and the pharmacy to get this straightened out! This is during my nadir time (spelling? lowest immunity) and I'm supposed to be avoiding crowds... her mistake had me spending far too much time in the pharmacy waiting room. NOT somewhere we should be when our WBC count is at its lowest. grrr. End Rant. 

     

    nsmolen -- I was initially told I was HER2+ too, but because I had one + sign, they did a FISH test that came back HER2-

    My understanding is that HER2+ is more aggressive than HER2-

    And you won't need a years worth of Herceptin infusions now. I personally view that as a good thing... though not sure how it factors into triple neg. 

     

    TC -- I haven't experienced the burning urination SE, but I did read that its a chemo symptom, I even purchased some flushable moist wipes prior to first tx, just in case. 

     

    Januaryice -- referring to your Claritin question. I agree with the others that you should take it. I took it for both treatments so far. It did NOTHING for me after tx #1. I started it as soon as I got back from infusion. 

    For tx #2, I had a half dose of Neulasta -- which obviously helped with the bone pain... BUT I will share that the day I stopped taking the Claritin during tx#2 around day 4 or 5, the bone pain spiked a little bit. Might be evidence that it helps.

    Other changes I made for tx#2 -- I started taking it BEFORE infusion. Regular Claritin 24 (not D -- although I've heard people go back and forth on that -- I used the reg 24). OH... I also started taking 400mg Ibuprofen along with Claritin prior to infusion and then again each day. ANything you can do to pre-treat the bone pain is worth it. Make sure they give you percocet, because if the bone pain starts... you will need it. I needed it both treatments -- just not as much the second time. Good luck!

     

    Massers -- you look fabulous either way! I'm not brave enough to post a "topless" photo yet. I'm buzzed, but was told not to shave to the skin so I still have some chia-pet patches hanging on. Did you shave yours to the skin or did it all fall out that cleanly? (jealous)

  • CAYH
    CAYH Member Posts: 99
    edited March 2012

    OopsB - I now see that Betsie, dianec & Pelicangirl all start tx today.

    Hope you're not too nervous during your infusions - the nurses will take cook care of you!

    Masserz - bangs to hide the forehead creases is spot on - precisely why I wear them & picked a  wig that has them too...ha ha every little bit helps.

    tc9876 - I also read that keeping a clean squirt bottle filled with water to rinse off after experiencing any burning helps too... 

  • journey4life
    journey4life Member Posts: 517
    edited March 2012

    masserz - either look is fantastic! If I decide I can't continue with the "natural" look, all the wig advice will sure come in handy.

    shera - what a pain to get what should have been a simple prescription! After all that, it better work on your rash. Keep us posted.

    nsmolen - one downside of being TN is because our HER2 is negative, there are no continuing treatments beyond chemo (i.e. Herceptin, Arimidex, etc.) It means that we have to be very vigilant regarding recurrence. However, on a good note, studies have shown that TN cancer is front-loaded, meaning that if there's going to be a recurrence, it's likely to happen in the first five years. After that time, our chances diminish greatly. That is not true for the HER2+ type - that's why the followup tx are available and necessary.  Be careful what you read about TNBC. Some of the literature out there is downright frightening and bleak. Yes, TNBC is aggressive but there are survivors! Thats what I'm focusing on! I will be a TNBC Survivor!!!

    Today is Tx2 Day 3 and I feel good! I hope it continues for the rest of the day. I have things to do lol.

    Best wishes for those with tx today. Marchers: hope your SEs are minimal and your good days outnumber the not-so-good ones! Hugs to all.

  • MichelleMassey
    MichelleMassey Member Posts: 213
    edited March 2012

    Shera-that really sucks. But you just.have to count it as one of these "gotta laugh" moments. Hopefully they got it all straightened out and your rash will get better.



    Lisa-so glad its a good day for you. I actually woke up feeling good today. Even made hubby's lunch and coffee. I'm like you hoping it holds on.



    Sending hugs to everyone having tx and best wishes for minimal SE to the rest of us!

  • Amymomto5
    Amymomto5 Member Posts: 73
    edited March 2012

    masserz - Love the pics!  You look great either way!  When my dh buzzed off my hair the other night, off went all my blond highlights.  Now I have dark (brunette) hair that I haven't seen myself with for 5 years! (started higlighting to hide the gray).  Like Georgiamom said, I too look like my brother!  Definitely look like a guy with this buzz cut.  I'm tempted to just shave it bald like yours - I think that look is nicer than my GI Jane buzz cut.  I thought the hair thing would be easy but I am really struggling.  The breasts were bad enough, but a prosthesis hides that.  I really feel like the last shred of my femininity is gone.  I hope in a few days it's better.  I hate letting my dh see my head, even though he says it's fine.

    Shera - My her2 status is 1+ also.  I asked about checking it with FISH, but my onc said she thinks it's fine.  The first onc I saw was going to have it double-checked.  And now if I'm not going to be able to continue chemo I really want it checked! (Maybe I could tolerate the herceptin?)  

    Speaking of chemo, my onc nurse called yesterday and said they are still waiting from the opinion of the other oncologist - hopefully I'll know today as MIL is flying in on Tuesday!  No need for her to spend 10 days here if I'm done with chemo!! Rather have her come back when I have lat flap reconstruction... I think there's a 95% chance chemo is over for me. If I lived down the road from the hospital I would totally try again, but to sit in a hotel room in Little Rock waiting 8-9 days for another potential reaction... silly.  What do y'all think? Would anyone else try it again? 

    Hugs to all those starting their chemo journeys and those with yucky side effects. On a positive, it is spring and sooo beautiful outside!!

    Amy 

  • Kraemermom
    Kraemermom Member Posts: 10
    edited March 2012

    Hi All-so back to the hair/no hair issues. I heard alot about coconut oil for the scalp. Is it ok to use during chemo or should I wait to use when all my treatments are finished? Any advice or knowledge?

    Day 1 after 2nd tx yesterday. This go around so far much better-probably be cause I am being a good patient this time and taking my meds more scheduled. Also got some essential/aromatherapy oils which helped me sleep great, helps with the nausea and really relaxes!

  • Kraemermom
    Kraemermom Member Posts: 10
    edited March 2012

    Anymomto5-I too use to color my hair blonde for so so many yrs. Had no idea what my real color was! Got the shave on Wed. and boy were those roots dark! My wig is a little darker that my previous hair with lots of highlights/shoulder length. I pull it back in a little clip to make it look somewhat like normal. So far people think I just went a little darker. I figured that was better for when my hair grows back it won't be such a shock with all those dark roots!

    Can;t remember are you the Mom with 5 children? I have 5 too. 3boys, 2 girls. Ages 8,12,14,15,23.

  • Amymomto5
    Amymomto5 Member Posts: 73
    edited March 2012

    Kraemermom, I have 3 boy, 2 girls too, in that order. 17, 14, 10, 7 & 3. Keeps ya busy, huh?!

    That's great that your wig turned out nice and people don't know.  The girl at the bank said she liked my haircut yesterday!  My wig parts in front and is a little long around the front, then sort of stacked (cut short) in back. 

  • Kymn
    Kymn Member Posts: 999
    edited March 2012

    Hi again ladies for those of you trying to figure out hair or scarve options this is the website I oredered my scarves from...I preferred them over the wigs...and I LOVED them. www.4women.com. they delievery is quick too.

    Have a wonderful weekend all

    Hugs Kymn

  • Lumpynme
    Lumpynme Member Posts: 747
    edited March 2012

    i need to get pics taken i guess- 1 with my semi bald head and 1 with my wig--my wig has bangs too- i figured they would help when my eyebrows fall out which they are starting to do!

    masserz; wow! you look great- i don't remember if you shaved? i did not and have not lost 100%---wisps of grey and brown!!!!

    about the job interview-cmcclean i think asked- no they didn't agree to early release on fridays yet- haven't told them that part- however; they feel that when i am more available (as i am now -previous chemo was most of monday then time off for neulasta shot appt) they can be more flexible-their words.... 

    i have to share-tonite i am having a multi-generational girls' nite out! my 4 year old granddaughter, her mother(DIL) and my daughter are taking me to see Mirror, Mirror -the new Julia Roberts ( i requested the movie!) and dinner afterwards! should be a trip as the grand is hyper but it will be fun!

  • kltb04
    kltb04 Member Posts: 1,051
    edited March 2012

    Kymn, thanks for the link!

    Good luck to everyone having TX today...and Amy, you know I am thinking about ya.

    Margo - have fun - sounds like a great time!

    Another day of feeling pretty good here - just an awful headache that I woke up with - OTC meds seem to have it under control though.  Doing a little light housework - laundry (that still needs to be folded), ran a mop over the floor, swished out the toilets.

    Not only is youngest DD having a friend over, I decided to let the older one have one of her BFFs over too - so at least they will have something to do tonight - makes it seem more "normal" - I know there will be a lot of running in and outside and loud (our home is on the smaller side and it gets crowded quick) - so I may be barricading myself in my room, lol.

    Oh and for those of you that remember my parents situation (living in an RV in my yard/selling their house 2 hours away), they bought a house!  It is across town about 15 minutes away and a new construction...so I am going to get out later and ride over with my mom to look at it.

  • munnybunni
    munnybunni Member Posts: 156
    edited March 2012

    it is day 8 afer first a/c tx....holey moley.....have the poo's...so i got imodium....stomach hurts...so i got zantac...and tums.....have lost 7 lbs.....blood sugars are higher than a georgia pine.

    go to mo on monday i think they take blood on that day and they will sched me for the nex tx plus scheduling me for the port

    sure m tired alot

    Cry

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