Is There A September 2011 Chemo Group?

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  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Karen - Gosh, only you know the answer to this one, how you feel, how you are doing, but I do like PinkShirt's solution.

  • Suz39
    Suz39 Member Posts: 125
    edited September 2011

    Wow Ladies, there is so much activity on this thread I had to take notes!  Thank you so much to everybody for sharing their stories.  This is so hard, but so so so much better with a great group of supportive women.

    RC - I also have no port, and get my chemo by IV.  I also only have 4 infusions, so I guess they figure that is fine. My second infusion was last Friday, and they blew out one of my veins.  I have a nasty purple bruise on my arm right now, but it isn't painful.  However, when I was feeling really blue this past weekend, seeing that bruise there was like the icing on the cake of my misery with accepting what is happening to my body right now.  I am so looking forward to Day 6, when I start to feel better again!

    Lwarstler - thanks for sharing your story about the NP and her opinion on your chemo.  Sometimes I can't get over how ill equipped some health care practitioners are.  It is shocking.  I LOVED Rockym's response!  Good for you for standing up for yourself!

    Thanks for the laughs Kimberley.  The picture was hilarious on its own, but the nipple reference put me over the edge.  You are great :-)

    I am Day 5, post round 2 TC.  I'm going to touch wood, and say that my SEs have been a lot better to handle this time around.  I had some pretty bad heart burn last night, but that is probably because I had shawarma for lunch yesterday.  My boney pain is managable, and I didn't have the nausea and vomitting that I had the first round.

    I hope everybody has a great day (all things considered)!

    Hugs! 

  • lwarstler
    lwarstler Member Posts: 341
    edited September 2011

    Rockym and Suz: Thanks for the support, and encouragement. It is actually the reinforcement and support from all of you ladies here that have helped me to finally be able to speak up for myself with the doctors. It has been so encouraging to hear how many of your are advocates for yourself and others that I am much more encouraged. Thank you...you have all be a huge blessing!


    Kimberly: Thanks for the push...push away because I want to keep the SE's and other issues down so reminders are more than welcome.


    Everyone else, thanks for all the love and support that has gotten me through a crazy week! You guys are awesome.

  • rjbaby69
    rjbaby69 Member Posts: 349
    edited September 2011

    Kimberly:  Thanks for the laugh!  That was too funny!  You're awesome!

    Suz39:  I am so glad to hear that your SE's were better this time around.  I have my 2nd treatment tomorrow and I have been so worried that my SE's were going to be worse!  I so hope that mine are as minimal as yours!

    Hope all you ladies have a wonderful day.

    HUGS!

  • belleeast
    belleeast Member Posts: 653
    edited September 2011

    hi all,

    last nite i polled my daughters( 3 nurses) via text if it would be all right to take bendryll as i felt some of my symptoms were allergic reaction. consensus was call the dr,so i did, she insisted i go to nearest er and get my heart checked tried to tell her i thought bendryll was what i needed she said better safe than sorry. so i spent 2 hrs at the er, getting poked and veins blown ekg and labs fine, dr seeming to imply it was all emotional arrrh. go home,live 1 block away, immediately throw up, i mean huge amounts thinking they are so lucky i left when i did then thinking i wish this toliet was that dr, i'll give him emotional lLOL.

    On the upside taking my meds, feel lot better !

  • Dana25
    Dana25 Member Posts: 36
    edited September 2011

    Kimberly- love it!!



    I am post day 10 DDAC and spiked a temp and my counts are low so I am in the hospital for a couple of days getting antibiotics. Wanted to share with you- my onc that she thinks those who are BRCA 1 positive are more sensitive to chemo which I found very interesting.



    Thanks everyone for the posts!! Have a great day.

  • cooka
    cooka Member Posts: 278
    edited September 2011

    Dana, sorry to hear you are in the hospital:(    Interesting about the BRCA 1 thing. I was tested for it because of an extensive family history of early onset cancers (all types), and although I was neg, the geneticist thinks there is prob some other undiscovered gene in play. I am also triple negative and went from pretty high (10.5) WBC to .1 neutrophils on first go around...anyway, feel better soon!!

  • lwarstler
    lwarstler Member Posts: 341
    edited September 2011

    Belleeast, so glad your meds are working. I have been taking mine regularly at the first even twinge of not feeling well. I'm hoping it will help me not get too sick.  

  • khegidio
    khegidio Member Posts: 100
    edited September 2011

    Hello Ladies.  It's been about a week since I have posted.  I had a lot of catch up reading to do!!  You all have been busy but it is really good to see how much support there is through this forum. 

    I am doing TAC x6.  My first infusion was on 9/21 so this is day 8 (I guess you count the actual day of chemo as day 1??).  Overall the SEs haven't been too bad - better than expected.  The day after I had difficulty eating.  Friday - Sunday I was really tired but never really nauseaous.  I was taking my nausea medication though like clockwork - every 6 hours.  So I am not sure if that helped or if the nausea just wasnt in my cards with this round.  I felt back to normal Monday and Tuesday - and today I am feeling not so great.  One SE that I have had consistently is heartburn.  AARRGH.  I hate that feeling of constant burn. 

    I did have one scary incident on Friday - day 3 after infusion.  We were eating dinner and at the end of the meal all of a sudden i just felt like my entire face was swelling (it wasnt).  I also got blurry vision and it felt like en elephant was on my chest.  We managed to get upstairs and had to run to the bathroom.  I heaved (but never got sick) a few times.  Then got incredibley dizzy and felt like I was going to pass out.  I sat on the bathroom floor for about 20 minutes until I felt back to normal.  It was so scary.  I was about a minute away from telling my husband to call 911.  He said I was as white as a ghost.  I will definitely ask my dr. about it when I go in Friday for my blood check.  Anyone had anything similar to this?  My mom said maybe it was an anxiety attack?

    I am dreading the hair loss too.  I have my hair shaving appt. on 10/4.  They will also fit my wig that day.  That's 14 days after my first chemo treatment.  I wonder if I will lose any before then.  My husband and mom will be going with me... And then I have invited my closest girls over later that afternoon for some wine.  I know I will be upset... but I am trying to make it as fun as possible so i'll get through the tears faster.  I will cry when they are shaving me, and then I will cry when I unveil to my friends/family.  I expect it - but I know I have no choice in the matter.  I hope one day I will be proud of it. 

    Thank you ladies for your posts.  It helps to know you're not alone when you're going through this.   

    Kate

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2011

    Okay guys... now you've gone and done it... I've had Jane Curtin on my mind and my plan for Halloween is right here!  My kids think this is great (remember 13 and 9) and since mom is a bit of a clown these days..

    I'm just waiting for Dan Ackroyd to come to my rescue. Here I am at 10 days out and I feel like one of the ladies who talked about pulling on her hair to see when it was going to happen. She mentioned that she was showing a co-worker and then BAM.. there it was (or wasn't).  

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Rocky - The picture doesn't show up on my end.  ?

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    You can try importing the picture with the little green doohickey on the toolbar.

  • Kelliregi
    Kelliregi Member Posts: 138
    edited September 2011

    One of the few things I like when I don't feel good is pretzels. Newmans's Own brand makes a high protein pretzel. 5gm of protein per serving. They are pretty tasty and I love that they have an extra kick of protein.

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2011

    Keliregi - I just found those high protein pretzels this week and I have been enjoying them - they're high protein after all!  They have a slightly different taste than regular pretzels but that just might be because everything has a slightly different taste these days.

     I had my 4th round of weekly taxol plus carboplatin today.  It was uneventful, just like I like it.  One thing I learned is that if you wear a hat to chemo, your temperature may show to be slightly elevated. The nurse used one of those forehead thermometers,  I didn't realize that and my initial temp was 99.5 which was high for me since I am almost always under 98.  I was a bit alarmed but the nurse noted my hat on the chart and my temp was back down to normal later when they took it under my tongue.  Just in case that helps anyone.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Well, I will have to try the Newman Brand.  I threw my pretzels out last chemo because I thought they tasted funny.  In retrospect, it was probably just my mouth mud at the time.  The refrigerator lost 20 pounds during chemo, straight to the curb.

     I was sporting the bald look today to the bank, Walgreens, chemo labs, Culver's Custard, so no temperature from a hat.  Bit of a chill if anything, but I'm typically too warm so that's kind of a relief.  Chemo nurses handed a printout for a company that gives away free scarves to patients with hair loss.  It felt like hint, hint, want to cover up your baldness lady?  But maybe I am being sensitive.  The program is called Goodwishes and they'll send you a freebie.  I checked it out and some of them are pretty nice if you ever plan on wearing a scarf.  Unfortunately they are for a 22-inch head and I am a 23-inch.  Maybe I could squeeze in like a tight pair of jeans but I don't like to wear anything tight, not since my teenage years.  Some of them are silk....I would like a silk pillow right now because the back of my head is like velcro.  Velvet with the grain, velcro against the grain.

    http://www.franceluxe.com/?gclid=CPnjh8-cwasCFU0EQAodmx5DvA

    Lee Ann and Kate, I don't know much about panic attacks.  I guess it would depend on whether you have had panic attacks before.  If you haven't had them before, then I would guess you were  just physically sick.

    So I am at Culver's ordering my cheeseburger for being a good girl at chemo lab, looking up at the menu, really forgetting that I am out there bald (which is the way I cope with it), when the young lady behind the counter tells me "You have such a pretty face."  I'm like "Huh? Oh yeah.  Thanks." Sigh.  Oh she was trying to be nice, but would you say that to a man in a wheelchair "Oh, you're looking handsome today."  Hell no.  You'd leave him alone unless he fell out of his chair in front of you.  Really.  And I should have the same right.  I do have the same right.  I guess I am channeling Gloria Steinem from my youth.  Sorry.

    They needed 2 strikes to hit my port today for lab draws.  I contained my joy.  You ladies with the blown veins have my condolences.  That sounds much much worse.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Hi Dana - Bummer you are in the hospital but glad they are dealing with it and trying to keep you safe.  When you say that patients with BRCA1 are more sensitive, does that mean the cancer is more sensitive to chemo or the patient is more sensitive to side effects like low counts? 

  • JoJo702
    JoJo702 Member Posts: 7
    edited September 2011

    Hello to all you ladies in the chemo group!  I just had my first chemo infusion today.  I am on A/C dose dense and I go back for a Neulasta injection tomorrow.  So far, I am doing good.  Have a headache and am more worried about how I will feel tomorrow and the day after that.

    My daughter, westieluv, posted here awhile back when they first told me I had to do the chemo as a triple neg patient.  Thank you for the welcome you gave me.  I have not had time to read all the prior posts, but I'll try to go back and catch up with you all.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    Welcome Barbara - If you had to join the club, we're glad to welcome you to the September ladies.

  • JoJo702
    JoJo702 Member Posts: 7
    edited September 2011

    Thanks Kimberly!  Not glad to be doing it, but ever so thankful for the sharing of ideas and information here on this forum.  It makes it easier to do this.

  • Dana25
    Dana25 Member Posts: 36
    edited September 2011

    Cooka-thanks!! Hope your next round goes well!! Great question. I took it as the cancer was more sensitive. I am trying to get all the chemo in to finish my treatment especially being triple neg. Let the chemo do it's work which it is so it's worth it. I had 3 rounds of TAC early this year then had BMX which showed NED except for 1 node.

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    For those of you who can't remember that far back and every frick and frack, Barbara (JoJo) is the mother of Westieluv, who wanted to throw mom a pre-chemo party and asked us for ideas.  Sorry Barb, I had to backtrack and look it up and I bet other ladies are lost to the reference too.  I hope they gave you good things like Drano and mowing your lawn, painting your nails, and massage certificate and silk pillows and silk scarves, and lots of hugs and laughs.

  • -RC-
    -RC- Member Posts: 287
    edited September 2011

    Thank you all for the support.  Especially thank you to Dana25 - I'm finding I'm dreading my 2nd tx which will be on Monday but your words remind me why I'm doing it.  I think I need to stop reading though, someone posted about having a blown vein which shook me up.  I know it's a possibility but I just hate to hear that it actually happened to someone.  My SE's were so very mild. 

  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011
  • Kimberly1961
    Kimberly1961 Member Posts: 407
    edited September 2011

    How you doing Bluejay? You pulled me off the brink of despair once.  Is there anything that I can do for you?  I wish.  I am not such a praying girl, but I wish this one goes better for you.

  • daintyBamf
    daintyBamf Member Posts: 20
    edited September 2011

    Kim--I LOVE the idea of a drawer full of boobs! I would imagine it would be quite amusing to make them as well, or maybe that is just the little kid sense of humor in me coming out!! :D 

    I have felt pretty 'normal' these past few days, which I am grateful for since we just got news that my husband's new contract got renewed but with a pay cut that will basically mean about $20,000 less for us per year! Effective immediately and they knew this a couple months ago but didn't even tell us when they knew what I am going through. Yuck! So now we are in super house search mode because we can't afford the place we are in now for more than another month and I am sort of freaking out because I am not sure how we will handle a move with me going through the tired days of chemo on my DDAC schedule. Right now I feel like myself and I woke up considering the possibility of asking my onc to delay the rest of my treatment a few months, but I also know that is probably not going to go over well since I have triple negative and grade 3. I think it sucks that I even have to consider delaying treatment and weigh the outcome vs. risks. I've been pretty strong through all of this, but it is like, for real? now this too? grrr.....   If it was any other time, I'd just get a job and we'd be fine (I have a degree so I could make a decent salary) but there is NO way I could handle working right now. The only reason I've done so well imo is because I have had lot so help, no stress, and a positive attitude so far. I feel like I am letting my family down because if I continue with the chemo it means I can't help anyone with searching for new homes, packing/moving, getting unpacked, and providing some extra income. The whole situation is just crappy and my parents think we should just leave Germany and come stay with them in Texas, but I don't want to uproot  our kids that way. they are going through enough and this is where we have called home for most of their lives. Plus, the company does have insurance and I really like the care at the military facility, where they have been great about my meds/etc. If we go back to the US, I have to worry about places out to just make money and thye might give me a harder time about getting all the meds and such that I do now.  Okay, vent over. I just needed to get it out. I just feel really frustrated and I know this isn't exactly what my husband signed up for either. Don't get me wrong, he has been really supportive, but I can't help feel like I should be doing more. :(    Okay. For Real. Venting is finished! 

    On a good note, tonight is my Head Shaving Party and I feel pretty good so I think I will be able to 'enjoy' it, or at least have some much needed laughs with my girlfriends! The 2 wigs I have make me look like a bad drag queen, so I am not sure what I plan to do about that, but I really like the idea of sporting a bald head or the funky knit beanie look. We'll see. I'm still pondering the possibilities. Take care ladies and I hope all of you have a great day today!  Sending you strength and smiles

    (I decided last night that I could be the Borg Queen for Halloween... I like the idea of telling any Cancer in my Body--Resistance is Futile... Chemo will take you down!)*pic is taken off the web, I WISH i had an autographed photo, lol*

  • daintyBamf
    daintyBamf Member Posts: 20
    edited September 2011

    Kim-- I looked over the site link and they are really easy to sew together! It looks like once you get a template done based on the size you need, it would be a breeze to whip out a bunch of them. If you ever want some help or fabrics or something, let me know. Sewing is the only thing that keeps me sane sometimes! :)

  • nanadeb
    nanadeb Member Posts: 169
    edited September 2011

    I belong here too

    I was in the Aug surgery thread and had a really hard time....tons of Dr visits between my heart, breathing problems and Onc. Went to Drs or surgery for my port everyday last week but one.

    So I've had some time to get on and read...but once again post little...sorry

    I am thinking of you all tho

    Anyways...todays the next dreaded day of this breast cancer thing...
    We have to be at Cleveland Clinic at 8
    They will draw blood...then we wait for labs and if all is good we
    wait while they mix my Chemo " cocktail"
    Once I'm hooked up it should take about 3 hours of so to finish.
    So a total of 4-5 hours there.Praying I will not have any bad side effects.


    I have read some scary things on the chemo boards.
    How they have to have a crash cart there the first time and Dr,just in case something happens to your heart or breathing.Worries me with all the problems I have

    Then driving an hour both ways.
    Going to make for a long day
    So not looking forward to this. 

    I then have to go back for that shot tomorrow morning and right after that to see my surgeon again. I have to have surgery deeper into my chest walls on both breasts(why do I still say breasts when I have none???) ...I was just crushed to hear that.

    I may need skin grafts in the middle of my chest , as it is in the skin also.

    The one tumor was right where the underwires hit on my bra :(

    But this morning I wrote a HAPPY blog  :)
    I hope it makes you happy ,like it does me !!!!
    http://atoosassygal.blogspot.com/

    Will check back in with you all when I can.
  • khegidio
    khegidio Member Posts: 100
    edited September 2011

    Question.... are any of you gals doing chemo before surgery?  Most if not all of the posts that I have read are ladies having surgery first and then chemo. 

    I decided to do chemo first, and then surgery.  My surgeon and onc told me that there is really no difference in prognosis - very slightly higher with chemo first.  But the other reasons she gave me were:

    1. it would give me time to research and decide on my surgery options (lumpectomy vs. mastectomy)

    2. Doing chemo with my tumor still present would allow them to watch the tumor and see if the chemo cocktail was working.  This would indicate that if the cancer had moved out of my breast (i have from what it looks like 1 impacted lymph node) it would address that too.  My CT scans came back fine but I guess there is always that possibility that some cells have moved into other parts of my body.

    This made sense to me - so I decided to do the chemo first but it definitely seems like I am in the minority.  Is there anyone else out there doing the same thing?

    Kate

  • PinkShirtNow
    PinkShirtNow Member Posts: 134
    edited September 2011

    A friend made me some t-shirt turbans and I wanted to pass on this inexpensive idea. It is the easiest thing to make ever!  Here is a link to the instructions on the Look Good Feel Better site:\http://lookgoodfeelbetter.org/beauty-guide/new-hair-looks  Click on t-shirt wraps.  I raided my husband's t-shirt drawer and found some really great raw material (aka old t-shirts that he really didn't need anymore).  If you already have t-shirts you can cut up, the turban is free.  My wild tie-dye turban gets some great compliments and it is very comfortable.  Just make sure you use a large enough t-shirt or it is too tight.  You can always adjust the turban to be smaller by twisting the shirt tighter.  You'll see what I mean when you look at the directions.

    Kate - I am doing chemo first to try to shrink my 3.9 cm tumor to see if I can have more surgical options.  I have small breasts and my tumor is pretty large in comparison.  My doc said it might shrink enough for a lumpectomy.  If it doesn't, it makes a mastectomy easier if the tumor is smaller too.  He also said that removing any lymph nodes would be easier after chemo because they would also be smaller and less "sticky" which could lessen the possibility of lymphedema.  He also said that he could guage the effectiveness of the chemo better if he could monitor the tumor size.  It all made sense to me so I decided to go with it.  I think we are in a growing minority but still not the norm.

  • Rockym
    Rockym Member Posts: 1,261
    edited September 2011

    daintyBamf, I love your Borg Queen!  Resistance is definitely futile!  Glad you're feeling normal these days.  Low stress and a positive attitude will get you far.  Your situation in Germany sounds a little tough, but perhaps some of it will will serve as a distraction.  Maybe your husband can take pictures of the places he's searching and pictures of the rooms, etc.  That way you can be in on the decision making without dragging yourself around.

    In regard to uprooting your family, in any situation this would be way stressful and I think you are really smart to have thought that one through and not just hop on a plane.  Your parents mean well and it's always nice when we know they are there for us regardless of whether we take them up on their offers.  Good luck, be well and we're here for you... Engage... ;-)

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