January 2013 chemo group

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  • cancernoway
    cancernoway Member Posts: 90
    edited March 2013

    Anne, I'm so sorry and I hope you feel better soon.  That just stinks.  Luckily, you were on top of it and got it taken care of.  I love peanut butter (at least right now) and it is a diet staple most of the time. 

    I had my treatment on Thursday and I don't know if it is #4 crappiness or because of this wonderful cold I've had for over a week, but I feel like crap.  My SE's don't normally start until Sunday, but I lost my taste buds yesterday and today my body is in the 90 yr old stage.  It is in the 60's today and I really wanted to get outside and enjoy the weather and I did sit on the porch for a little while, but then I had to come back in because I felt so bad.  My DH came in the house to check on me and I broke down in tears.  I'm not much of a crier so he knew it wasn't good.  He got me a pain pill and some ice cream and a fresh glass of water.  I just really don't feel so good this time.  I hope it goes away faster since it hit faster, but I'm not going hold my breath on that one.  As long as it goes away, I'm good.  Only two more to go, that's what I keep telling myself.

  • LeeA
    LeeA Member Posts: 1,660
    edited March 2013

    cancernoway, I'm so sorry this one has hit you hard.  The cold/cough probably isn't helping.

    For me, thus far, number four was the most difficult.  I got fluids at one week and even with that, didn't start feeling like myself again until Saturday/Sunday (which was day 11/12).  

    Because of my WBC he reduced the dose this time and although it might be too soon to tell, I've had the most productive post-chemotherapy Saturday I've had to date.  

    Also, for some reason, I was much more emotional with treatment number four than I had been with the previous three.  I just reread your post.  For what it's worth, the side effects with number four hit me quicker than the side effects from number three.  

    I hope you wake up in the morning feeling much, much better!  ((hugs))

  • Nicole503
    Nicole503 Member Posts: 295
    edited March 2013

    Happy Sunday everyone (Easter Sunday for those who celebrate) ~

    Today is the 5 month mark since my diagnosis.  Sometimes I have to stop and appreciate just how staggering the changes over the last 5 months are. 

    (Potential TMI alert!)  I'm feeling a little tender this morning after an intimate encounter with my husband last night left me feeling pretty sad about how much loss we've had to endure as part of the breast cancer experience.  First it was my breasts, then my hair, then my energy & libido, and now it seems like I have to add my vagina to this list of things that have changed in a way that is challenging.  We accepted that chemopause would require the use of artificial lubricants but even with slippery stuff sex feels a lot like it did when I was 16 (yes, I was an early adopter) ~ a slight burning/raw sensation. It is hard to relax into pleasure when you are trying to figure out how to ease the discomfort and re-find what used to be easy and free flowing. Anyone find good solutions to this??

    I do appreciate my husband and his patience and persistence and willingness to try to help re-find a sweet and satisfying sex life.  Shifting from AC to Taxol seems to have restored my libido a bit and that is a relief in and of itself.  I'm fairly confident that we will negotiate this change as we have negotiated so many over 20 years of marriage. This is not our first significant challenge but I am full of angry and sad feelings this morning that stupid dumb breast cancer has so completely gotten into our bedroom.

    Helps to vent a bit here to all of you who are likely experiencing your own versions of this.  Thanks for listening.

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited March 2013

     The hot flashes are a few a night and they seem to be getting stronger. My periods have completely stopped (yay) at tx #3.  Its cold up here in upstate ny and I am going to bed in a tank top and shorts and 1 sheet, My DH is in full flannel PJs and two blankets. I was joking that I was thinking about setting up our tent and sleeping outside. Seriously, though, #4 was definitely the hardest round to bounce back from. I felt that it took longer to regain my energy and feel kind of normal. This was my good week, and it took a few extra days to get to the 'good week feeling'. That last AC is becoming a distant memory and I happy to see the red devil go. I see myself standing on a two lane highway with my head held high and my middle finger up in the air as the devil runs away down that highway. Good riddens you son of a bitch. LOL

    Taxol #1of 12 is tomorrow as long as my counts are acceptable. I feel ready. I've been taking my B6/B12 and I stopped shaving my head. It's been a week and I have something going on up there on my head. I know B vitamins encourage hair growth so that makes me happy. I will be happy with the GI Jane look for now.

    We had Easter dinner last sunday so today its just the us. Nice, relaxing day. AHHHH.... Enjoy your day Bellas!!

  • melody46
    melody46 Member Posts: 279
    edited March 2013

    Hi Russell33 do you mind me asking what your WBC was before the treatment? I didn't have the shot with my first treatment and got really low like 1.2 on wbc and 0.8 on the neutrophil and ran a small fever for a couple days and I had to take antibiotics. My counts are pretty high I think 13 on WBC. Thanks

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

    Nicole~~Here's the thread that deals with painful intercourse. There is help!



    Blessings

    Paula



    http://community.breastcancer.org/topic_post?forum_id=8&id=776318&page=1

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

    Nicole I appreciate you bringing that up. I've had the same issue and just thought it was due to whatever screwed up the tissue in my mouth. I didn't realize there was potentially something we could do to help the pain!



    While I didn't really have the immediate se's with tx #4, I do have crippling fatigue that I can't seem to shake. I go to bed exhausted and wake up exhausted after a solid 8 hours of sleep. I have #5 this week and have just accepted this may be how it is for the last two treatments. Wow, I am actually excited for radiation because that means chemo is over.



    Hope everyone is having a happy Easter!

  • ywheels22
    ywheels22 Member Posts: 230
    edited March 2013

    Skigirl: I too, felt #4 was much harder to get over. I am 11 days post AC#4 and, with this horrible cold, I am still not feeling as good as I did at this same time during 1-3. I have my first of four Taxol on Wednesday and I hope I have more energy by then. I went outside to do a bit of yard work today after church and breakfast and what would normally be a nothing chore, sucked all the energy out of me. I hope Taxol is a bit easier for us! I have not had any hot flashes or such. I have not had my period at all but I was also on the Nuva ring before this dx so that may be why too. I feel fine in that regards, thought the libido is not really there right now.

    Nicole: Thank you for sharing your experience. I don't think there's such a thing at TMI on these boards! My poor DH has had not much since all this started in January for us. I hope to get back into the groove of things in the next couple of weeks.

  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    Zorina: I laughed out loud at your comment about staying out of DH’s way when he’s housecleaning! J

    Martha, I think you and I have the same food problems. I miss tomatoes so much! And Cholula, and salsa, and… mmmmm….  Also, about the FB page: It’s set up so that you can only see it if you’re invited to join, so even when you post there, your friends who aren’t in the group won’t be able to see it. If you want to join us, just friend me (Bryona Golding) and I’ll invite you in.

    And that goes for the rest of you, too: Come joine us on Facebook! We’d love to have you!

    Ann (russell33), I’m so sorry you’re having to go through that. Rant away! I don’t get it – they gave me my Neulasta right on schedule after my last AC. I hope you’re feeling better by the hour, and that you are able to enjoy your delayed Easter as much as you would have today.

    cancernoway, I’m sorry this round is hitting you so hard. My round 3 of AC came on the heals of my awful cold, and that round sucked moose balls, as smethot would say. Hang in there, sweet pea. (((hugs)))

    Nicole, I think you need to consult with Lee’s MO. He seems to be the king of advice for dealing with sex-related SEs. And he sounds like a riot!

    Skigirl, I hope those counts are where they should be and that everything goes swimmingly for you tomorrow. Kiss our asses, AC, you rat bastard!

    Jules, I hope you get at least a little break in the fatigue. Even if you don’t, though, just keep reminding yourself that this is temporary. It sucks beyond the telling, but it’s temporary. You’ll get through this.

    Hang in there, all of you. I wish you easy SEs, plenty of rest, and a healthy middle finger with which to flip off whatever gets in your way. Ciao, bellas!

  • russell33
    russell33 Member Posts: 48
    edited March 2013

    Hi Melody46, My WBC on Mar 19 (last day of #4 chemo) was 12.2 and neutrophil was 89.8.  Unbelievable what a difference.  I was so happy that I didn't have to do the shot because of the aches and pains, but I suffered 10x's worse without the shot. I hope you and the other ladies never have to experience this.  Happy Easter! 

  • russell33
    russell33 Member Posts: 48
    edited March 2013

    Byrone, thank you. Hoping for a speedy recovery.  I start radiation on April 11 and don't want to feel like crap.  Happy Easter.  Anne

  • Bryona
    Bryona Member Posts: 214
    edited March 2013

    Anne, at least your WBC count before treatment explains why they didn't give you that shot. Holy moly! Well, I guess you know now that the nasty side effects of the Neulasta were worth it. With any luck, you'll feel right as rain by the time you start rads, and those will be a piece of cake... special delivery from the Easter bunny!

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

    My neutrophils on Friday were less than 1, but because I was feeling fine, no fever, or anything, they let me get my 5th Taxol. They only give Neulasta to those who are dose dense. So, all I can do is be diligent about sterilizing and pray for them to raise for this Friday.



    We're having a late dinner. Semi boneless ham, cowboy beans, and potato salad, and later we'll have lattice top apple pie with vanilla ice cream. DH has Mondays off, so we'll be up very late.



    Blessings

    Paula

  • Zorina
    Zorina Member Posts: 103
    edited March 2013

    YWHeels - I am doing four dose-dense Taxol treatments. I have #3 this Thursday. 

    I do get neuropathy during treatment, which I think is unusual, but it disappears the next day and comes back days 3-5.  It hung around longer this time, but the most uncomfortable was days 3-5.  I find a hot bath (right arm, toes and fingers out of the heat!) and some advil do wonders.  I generally find that if I take a hot bath at night, my condition going forward improves greatly. 

    My nails hurt like hell yesterday, so I iced them.  I have not iced during treatment, but I will this week.  If nothing else, it will feel good. despite the pain, I don't see any discolortion, yet. Knock on wood.

    As far as fatigue...MO says a lot of my problem is due to my low HGB (anemia), which has been hovering between 8 and 9 since A/C.  I get winded easily, and I get cold easily, too!

    But, it is still so much better than A/C!!

  • Nicole503
    Nicole503 Member Posts: 295
    edited March 2013

     Soteria205 ~ Thanks for the painful intercourse thread!!!  This site is truly such a blessing!  The only risk is that I am getting to the point of having bookmarked so many topics that I spend more time here than on FB.  The two of them combined is a serious time sink (but one that brings much support & happiness)!

  • LeeA
    LeeA Member Posts: 1,660
    edited April 2013

    Beautiful new photo, Nicole!  

  • smethot
    smethot Member Posts: 161
    edited April 2013

    I have decided i have been a good sport about this bald thing so far but quite franky, i am done.  Wants me hair back.  Like rfn.  It kept trying to regrow on ac and getting hammered.  But i am now FINISHED ac and getting excited...I HAVE INGROWN HAIRS.  Who in the f*** gets excited about ingrown hairs???  ME!!!  I want hair!!!  I am TOTALLY on-board with the GI Jane look...after 10% overall hair scruff...GI Jane will be a high fashion look.  My hair grows really fast...1/2 inch to an inch a month under normal circumstances, so i'm really hoping taxol will be my friend insofar as NOT keeping me follically-challenged...

    ...bring on the shampoo...    xoxox  Shan

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited April 2013

    Hooked up and ready for taxol #1 of 12! Count was barely acceptable. She treats when the count is over 1. Mine was 1.1. Bring on the benadryl Smile and dex Frown. I was hoping for no dex.... oh well. I'll be back when I wake from the benadryl and am all cracked out on the steroids. LOL

    No April Fools here... we are a go. Die you little cancer cell rat bastards.....

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

    russell33 I'm so sorry you had such a rough go getting out of chemo. Hope you are feeling better. I wonder why your doc didn't give you the shot for the last one. Your body would still be going through the same shit to overcome it. And it was me that posted about peanut butter. It is amazing to me that PB is the one thing that has stayed true and consistent through all the ups and downs with my tastes. Most anything else that I really wanted and tasted good during one tx didn't taste good during the next. :(

    Oh yes, Lee and other, even though we are on different protocols my #4 was the worst as well. Hit me harder and faster. I was also extremely fatigued for much longer.  So far #5 has killed my appetite for ANYTHING, but I don't feel so dragged down as bad . . . at least so far. I don't know if anyone's hot flashes go like this, but I am boiling one second and cold the next. I am sleeping in capris and a tank top with a sheet covering half my body and pulling/tossing the quilt every minute it feels. That can't make for a good solid sleep.

    I posted on FB yesterday that I noticed hair on my legs yesterday. Lots of it. I didn't notice at first, and when I pointed it out to my DH he said "Holy monkey butt your hairy". Didn't think I would be so happy to see hair on my legs ever. It is extremely fine which is why I probably haven't noticed it. Definetly bummed to have to deal with shaving my legs and not having hair on my head though.

    I've been on a very dark path the past few weeks - very mad and detached. I'm just holding my breath to get past the next month and then feel like I can exhale.

  • LeeA
    LeeA Member Posts: 1,660
    edited April 2013

    Skigirl, I just noticed your signature line:  "Cancer may have started this fight, but I will finish it!!"

    Excellent! 

    --

    skimommi, "mad and detached" (you have a good way of describing things) but this is your exhale month!  

    --

    A reduced number five dosage definitely made for an easier Dark Days of Chemo weekend.  We actually went out for dinner last night - a first on a post-treatment Sunday.  I had meat and that's not the easiest on the digestion at this point but it sure did taste good as the tastebuds had been basically burnt the two days prior. 

    --

    For those of you who are on Twitter and are moving on to radiation - the #BCSM social media group is doing an hour-long Twitter discussion on radiation.  The group is moderated by two breast cancer survivors as well as Dr. Deanna Attai (@DrAttai).  Dr. Attai is one of our tried and true advocates and if anyone is interested in visiting their new site, here's the link:

    http://www.bcsmcommunity.org/

    The chat is tonight on Twitter - hashtag #BCSM - time - 9:00 Eastern, 8:00 Central, 7:00 Mountain, 6:00 Pacific

    (I use Tweetdeck and just open up a search column for #BCSM which makes it very easy to follow along)

     

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

    Lee thank for the tip on the Twitter discussion. I have to admit, I'm extremely green when it comes to Twitter, but I'm going to pop on and give it a try. Glad you were able to have a nice dinner out with your hubby. There will be lots more of those to come. :)

  • Bryona
    Bryona Member Posts: 214
    edited April 2013

    Paula, I'm glad you were able to stay on schedule. I hope those numbers come up for the next round.

    Zorina, I think we should have t-shirts with that on them: "So much better than A/C!" Or maybe a tattoo...

    skimommi, I think the detached part was one of the toughest for me to deal with. I didn't want to talk to anyone, didn't want to do anything, just sort of felt like this was all happening to someone else, and not in a way that made me feel peaceful or serene. I just felt like a cranky, bored, unkind person had taken over my mind and body, and I didn't like it at all. I never did find a drug to help with that, either. But, on the bright side, after that last AC, cranky-disengaged-Bryona-wannabe disappeared and goofy-enthusiastic-chatty-Cathy-Bryona took right back over. That's going to happen for you, too. Just wait and see. On a separate note, I said, "Holy monkey butt!" to one of my students in class today. It made my whole day better. :)

    Taxol #2 gave me more fatigue and acid issues than round 1 did, so I was dragging ass a bit at work today (but it's still better than AC!). That was unexpected; last week, the fatigue just lasted one day (Sunday), so I was fine at work. I tried taking it easier Saturday to reserve some energy, but maybe that backfired. Or maybe this is just my grand, cosmic punishment for failing to finish mowing the lawn... :)

  • Nicole503
    Nicole503 Member Posts: 295
    edited April 2013

    Hey Bryona ~

    I had to increase my prilosec to 60mg/day (up from 40 mg/day) on Taxol. The way my doc described it is that my stomach hasn't been able to heal from the AC because Taxol has just added insult to injury. Or as she likes to remind me......the side effects are cumulative.  I am feeling much better on the increased dose.

    Be well.

  • Bryona
    Bryona Member Posts: 214
    edited April 2013

    Nicole, did the increased Prilosec affect your fatigue, too? I feel like my fatigue is totally connected to my irritated stomach.

    And you've hit on one of my biggest current frustrations: I know I'm having trouble with stomach acid (it feels like I'm trying to digest cement), but I can't have Prilosec or Prevacid or Zantac or any damned thing that works. I'm stuck with Carafate, which has to be taken at least an hour before eating and at least 3 hours after, and I'm supposed to take it 4 times a day. That means no nibbling, which is my standard strategy for dealing with the vaguely unhappy stomach, and it means figuring out a rigid eating-and-drug-taking schedule that fits into my rigid teaching schedule. I haven't figured that one out yet, and to be honest, I'm not even sure it's worth the effort. Even when I take the Carafate in the morning, it doesn't feel like it does any good at all. If anything, it just starts the cement-digestion feeling earlier. 

    Sorry 'bout that. I'm feeling cranky. I think it's something you've said before (or maybe it was Zorina? Or Paula?): The fact that I feel so much more normal on Taxol makes me that much more impatient with the things that aren't normal. I'm adjusting my attitude now -- one moment please...

    Attitude adjusted. Thank you for your patience. :)

    I'm going to check with my MO this week to see exactly what the risk is of the pancreatitis returning if I go back on the Prilosec or one of the other drugs. I'd like to avoid this gastric nastiness if I can; maybe it's worth the risk. (Or maybe it's been too long since the pancreatitis and I'm pretending to forget how VERY much I don't want to go there again!) Anyway, I'm hoping she'll have some better answers.

  • LeeA
    LeeA Member Posts: 1,660
    edited April 2013

    Bryona, are you taking a probiotic?  

  • SherylB
    SherylB Member Posts: 450
    edited April 2013

    Hi all you wonderful folks,

    I have crappy feelings of depression and leg pain, however, I do have a positive to share. Final chemo 3/14 and my taste buds are almost normal again and they were really wacked so hang in there all you fine folks who are still experiencing everything tasting like s**t.

    Hugs, Sheryl

  • russell33
    russell33 Member Posts: 48
    edited April 2013

    Sheryl, so glad there is a light at the end of the tunnel for taste buds:)  My final treatment was 3/19 and everything still taste awful except for sweets.  As soon as I can eat regular food again there will be no more sweet treats in my house for a while (do to wt. gain).  So glad you can taste good things:)  Congratulations on your last chemo.  Hugs, Anne

  • NHMom
    NHMom Member Posts: 9
    edited April 2013

    Hi Everyone - I've posted only a few times, but have followed everyone's journeys and am so appreciative of all of you.   I love the new avatars - there are so many beautiful people in this forum, inside and out. 

    I have finished AC and have had 2 out of 12 taxol treatments, 3rd scheduled for tomorrow.

    I have a question related to heads with short, scratchy little hairs:  Has anyone found that one type of pillowcase works better than any other?  i.e. satin vs. cotton, or something else?  My unrelenting hot flashes keep me from wearing my sleep cap, which would normally prevent all those little hairs from getting stuck in the pillow case. 

    Speaking of hot flashes - any suggestions for good, moisture wicking pajamas?  Me who usually sleeps with multiple layers of pajamas, two pairs of socks and multiple layers of covers, is down to a comforter (until the next flash comes) and cotton jammies.   And waking up many times a night.  Never thought I'd appreciate the cold of a long NH winter....    Thanks for any help!

  • Skigirl72
    Skigirl72 Member Posts: 478
    edited April 2013

    NHMom- I have a cotton pillowcase. The flannel was too much. My hot flashes are primarily at night and it is not fun! I am sleeping in a tank top and shorts with one sheet and my DH is in full flannel and the comforter. My little hairs are fine with the cotton pillowcase. I think its just the growing phase and the prickly feeling will subside when the hair gets longer. I hope anyway.

    How has your side effects been on taxol? I has my first of 12 yesterday. My taste buds are doing weird things but so far that is about it. Hoping the aches and pains the nurses said I might get will be minimal.

    Have a great day ladies! The kid is off from school and we are going laptop shopping. It will primarily be his since my DH and I have our own. The desktop tower bundle is 9 years old. Gonna take a sledgehammer to it after I remove the dvd drive and the extra memory. That thing has been resurrected a few times and now it just struggles to keep up. Cant wait to get rid of the huge ass desk in the office too...

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

    Bryona...I second what LeeA said about probiotics. There's nothing better than the natural way. I've never had any stomach issues with AC or Taxol.



    Paula

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