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  • beegirl
    beegirl Member Posts: 53
    edited June 2008

    SharonS: I had #13 this morning,so, yes, we're on the same schedule. The hair on my head is now dark and gray. At first it was only white/gray (which is what I expected since I've colored my hair except for a silver streak in front for many years). Since my last tx I've been using Nioxin cleanser and scalp therapy in the shower every day; then I use the scalp treatment 2x a day. No way to know if that really helps. I'm starting to get some hair in my arm pit above the lymph node scar; I can use an electric shaver if I want while doing rads. Where is Stuarts Draft?

    For those of you having tx this week (and recovering), hang in there!

  • sharons
    sharons Member Posts: 177
    edited June 2008

    Hi Beegirl...mine is 330 today.  My hair looks light...I had a few gray hairs before, but mostly light brown...so we will see...I don't care if it is gray...I just want hair.

    I started the nioxin on friday in the shower...haven't done the scalp treatment yet...but will start it...did it make your head turn red like it says?  No armpit hair for me yet...and it seems as if I am still losing PH...and a few eyebrows...more on one side.

    Stuarts Draft is between Staunton and Cville..

    Yes, hang in there with the chemo everyone....

  • beegirl
    beegirl Member Posts: 53
    edited June 2008

    Hi Sharon... no, the nioxin hasn't made my head red. I know what you mean about just wanting hair. In the heat we're having, the wig is hot, as is the "halo" of hair that I sometimes wear with scarves or a visor hat. When I go for rads in the am I just wear a scarf. Don't see any hair on my legs from the knee down. I'd like to find a self-tanner to use that doesn't have a noticeable smell (like the Dove stuff I used last summer).

  • Tigwin
    Tigwin Member Posts: 115
    edited June 2008

    OH BEEGIRL AND SHARONS....YEAH YOU HAVE HAIR !!!!!

  • Jisman
    Jisman Member Posts: 96
    edited June 2008

    Did the Relay for Life this weekend with other members of the local ACS Breast Cancer Support Group.  Very moving opening and luminary ceremony.  Shall post the picture of the TC Group candle once it is downloaded from the camera and I figure out how to do it.

    Have dropped 5 of the chemo pounds in the last month.  Lasix plus increased exercise.  Still have the other 8 to go.

    As for eyebrows and eyelashes ... I never lost all of my lashes and brows.  Both thinned.  Brows to the point where I needed to augment with eyebrow powder - more on the outer edge than anywhere else.  The lashes were ok - especially since I wear glasses.  I'm now 6 weeks out from my last chemo and things are growing again.  Of course that also means the brow hairs are coming in in areas where they need to be plucked!

    Hair is coming back pretty well.  Full coverage, soft, fuzz.  Went "topless" for much of the Relay for Life.  Figured most of those folks have "been there, done that" or seen it before and it was just too hot to wear a wig.  Did have a sun hat for most of the daylight hours.

    Which Nioxin is recommended?  Stopped by a hair salon and they have a whole wall of Nioxin products.

    LizC -  Talk with your onco about the Alaskan Cruise plans.  The timing actually sounds relatively good - 3 solid weeks after your last chemo.  You may want to get some antibiotics from your onco just to have them in case anything comes up.  An Alaskan cruise is wonderful (we did it in '05 or '06 with Princess).  Plan not to overdo it though.  Take naps as you need.  The scenery will do wonders for you.  My onco was ok with my going to Atlantis two weeks after my last chemo (didn't make it to the Dolphin Encounter though).  He said I could call him form there just as easily as calling him form home.  Look into the insurance though - just in case.  We had to postpone a Caribbean cruise right after my diagnosis.  The cruise line was great even though they didn't have to be. 

    Hoping all are doing well.

  • beachmom13
    beachmom13 Member Posts: 85
    edited June 2008

    Here's some good news for those of you getting ready for tx 3.  Mine has actually been better than the first.  My se's hit earlier - Friday night, but seem to be completely gone now.  I slept all day Saturday.  Sunday I was up during the day, but did hit the bed early last night - around 7.  Today I've felt fine and was pretty much back to my normal activity or what would be my normal activity if it wasn't so hot that I refuse to leave the house.  By this time my taste is usually gone, but so far that's stuck around.  I'm not putting any money on that happening.  As I said before tx3 I did visit my friendly massage therapist, and I really believe that made a huge difference.

    I hope all of you are on the way to feeling good and are trying to stay cool or warm, depending on where you live.  Best to everyone having tx. tomorrow.

  • pmwelser
    pmwelser Member Posts: 10
    edited June 2008

    Day 7 of cycle 1.   I am feeling better today than yesterday, but have developed thrush.  This was a fear for me since I am a singer and tend to baby my throat. 

    To those of you using Nioxin, my stylist has me using it now in hopes that the hair loss will be delayed or there will just be some thinning.  I am not holding out a lot of hope, but will let you all know.  I hope I can deal with no hair for a little while - at least I am fairly certain it will come back and anything temporary....

    Was anyone here diagnosed with spindle cell? 

    Hope everyone is doing great and getting through.

  • revkat
    revkat Member Posts: 122
    edited June 2008

    I had thrush with tx 1 and they first put me on nystantin -- swish and swollow, but I felt like that was just too much to ask someone who was doing chemo, had a horrible taste in her mouth anyway, and gagged at the thought of swollowing the nystantin so they switched it to diflucan. Now I take it for 5 days each treatment as a preventative. I hope you get it treated and get rid of it quickly.

  • beegirl
    beegirl Member Posts: 53
    edited June 2008

    jisman: I got Nioxin at the shop where I got my wig so they only had one choice, with the cleanser, scalp therapy and scalp treatment in one set. Each bottle has the number 1 on it. Hope this helps.

    I look forward to seeing the picture of the TC Group candle from the Relay for Life. That must have been something to see!

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    Just wanted to chime in with Beach mom as we are on the same schedule. Everyone told me 3 would be the worst, but it has by far been the best. Least side effects of any! I am actually going to exercise class ( scaled down of course) on day 6 out from treatment. Little draggy so I will be curious about my blood counts, but overall not bad.



    My sister works for the beauty supply industry and she suggested I use the Nioxon starting before treatment and continue everyday. I have never lost all of my hair, even though I shaved it. The short hair on my head is actual strong hair, not fuzz and grows between treatments. Of course I did lose alot of it, but there is considerable stubble left. Hoping this makes is grow back in stronger and faster.



    Otter, how are you feeling a week out from 4? Hopefully great - I can't wait.



    Hope everybody has a wonderful week.

    Karen

  • otter
    otter Member Posts: 757
    edited June 2008

    Well, Karen, I think chemo #4 has caught up with me.  Not too surprising, I guess, since it was the same drugs I've had before--why should they not poison me this time, too?   :)

    I slept until 9:30 this morning, which is about 2-1/2 hours later than usual; and I am dragging.  It's not bad--I don't have any sharp pains or anything, like previous cycles; but I'm just sort of achy and tired and foggy-brained.  Maybe yesterday's trip to WalMart was too much excitement for one day!

    Oh, and my tongue tastes like I've been licking our gravel driveway.  I hate what this stuff does to our mouths and taste buds.  Last night my dh made me a peanut butter milkshake, and the peanut butter didn't taste "normal" at all.  My appetite has been good so far this cycle--eating normal foods but maybe not quite so much junk, which is a good thing.  Today, though, because of the sore mouth and yucky taste, nothing seems like it is going to taste good.

    My feet seem to be OK this time--at least I don't have quite the soreness on my heels as I've had before, but it is still a bit early to tell.  That has usually taken another couple of days to develop.  One thing that is worse is that my fingers hurt.  I've been really careful to protect my fingers and nails, but my nailbeds are really tender.  The nails aren't peeling or separating, though--they are just a bit darker than usual and have white bands that I guess correspond to each of my chemo treatments. I decided not to mess with dipping them in tea tree oil or anything, since they are strong and hard and I don't normally do anything to them except keep the nails trimmed short.

    This is day 7 of this cycle, so I should be feeling better pretty soon, regardless.  I just hope I can avoid that late-cycle fever/sinus infection I got last time.  That illness (or maybe the antibiotic they treated it with) made me feel yucky through my whole "good" week.

    I am going to work on an update of our TC schedule and get it posted today or tomorrow.  If your tx is coming up in the next week or two and you haven't mentioned it lately, let me know the date(s) and I'll put them on the calendar.

    Here's hoping y'all look good but feel better (the LGFB class notwithstanding)!

    otter

  • sharons
    sharons Member Posts: 177
    edited June 2008

    Otter - #4 with me was by far the worst with the bad taste and mouth yuk, and I am sorry to say that it lasted longer also...I hope yours doesn't.  I am 5 weeks out and my taste is just coming back.

    I am with you on the nails...they don't look right, but I am just leaving them be

    have a good day all who are having treatments.

    Sharon

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    I hadn't heard anything about Nioxin....I just bought a wig yesterday--could I have avoided it?  I had my 1st tx on 6/4 and feel completely normal--still wondering if the Compazine was making me feel weird at first.  Has anyone else noticed their anti-nausea meds made them wonky (and not in a fun way)?

    I didn't have (or haven't yet had) any pain from the Neulasta shot--does it creep up later, or could I possibly have some in future treatments?  I feel kind of like I'm waiting for the other shoe to drop, because this first tx has really been pretty easy.  I keep remembering Otter's analogy of jumping off a high building, and it's easy at first....Otter, does that mean I'd better not get too comfy with the idea this isn't so bad??

  • revkat
    revkat Member Posts: 122
    edited June 2008

    I get to go in for tx4 today! After being bumped last week due to a high liver enzyme I've had a bad week emotionally, but a good one physically. I was almost hoping the onco would say "let's just skip this one and move on", but then I would always wonder about the effectiveness. So today it is.

  • otter
    otter Member Posts: 757
    edited June 2008

    Nah, catlover, go ahead and think it will be easy.  Sometimes it is.  It is just so very different for each of us, even if we're getting the same thing.  The analogy about jumping off the building is what I say when someone (usually one of my well-meaning relatives) says, "Oh, so you had your last chemo treatment yesterday (or Friday, or tomorrow)--then you're all done!".  Well, not quite yet...

    From the stuff I've read, about half of all women getting Neulasta do not get the bone pain other women get.  Some women get really mild aches that don't need treatment or that respond well to aspirin or ibuprofen.  For me, it has been different with each chemo cycle.  I suspect someday, someone will show that the amount of bone pain depends on how high our white count is during the next few days after the shot is given.  The higher the wbc is when the shot is given, the less the Neulasta will stimulate the bone marrow to make new wbc (which is true) ...and the less the bone pain?  I don't know.  My onco insists (as does her nurse) that exercise (walking, anything active) will help reduce the chance of getting Neulasta bone pain.

    Yes, I think Compazine and the other anti-nausea meds can mess with us and sometimes make us feel worse.  My onco is a "minimalist"--she treats only what needs to be treated as far as SE's are concerned.  Sometimes that is a good thing--if you don't need a drug, there's no point taking it.  If you do need it, though, take it; 'cause the nausea will make you feel awful.

    Go ahead and feel good!  Just remember that you don't HAVE to be positive all the time.  Some days if you feel awful, you can come here and complain and we will all understand.

    otter

    [Note added in edit: YAY revkat--that is great news (I guess)!  Moving forward!  I hope your infusion goes smoothly.] 

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    Thanks, Otter.  That makes sense about the wbc affecting how much pain the Neulasta may cause.  Every tx is a new adventure, right?  Lucky me, to have 6 of them. 

    I took the Compazine every 6 hours faithfully from Wed. afternoon until Friday afternoon just to ward off any nausea (which worked), but I really hated the depressed way I felt with it. (Trust me, I was NOT positive on those days!)  But I was afraid that if I waited until I did feel sick, the meds might not kick it.  I HATE to feel sick at my stomach.  (Well, who likes it?)  Maybe next time I should wait until I actually need something.  Sigh.

    I have been getting on our elliptical a little every day, not to the point of huffing & puffing, but at least getting my flabby legs moving.  So that can't hurt.  Although I shouldn't have bought that bag of Golden Flake BBQ chips that's calling my name.....

    I'm glad for you that you're all done, and I'm also glad you're still hanging around helping us newbies through this!

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    Oops, Otter, I said you're "all done"!  Sorry, you know what I meant!

  • RNKaren
    RNKaren Member Posts: 32
    edited June 2008

    Hello,

    On Friday, I had treatment # 4 of 6.  I don't know how I can go through 2 more.  Sat. and Sunday were okay, but Mon and Tues were rough.  Tired, weak, some shortness of breath, spending time in bed- getting up to go to the bathroom, eat, drink, walk around some.  Very emotional, down in the dumps.  Was off Monday, and took FML today and tomorrow.  Hoping I can gain strength to work Thurs and Fri.  My tongue feels burnt, my fingers and toes hurt.  My fingernails are tender- my pharmocologist at the cancer center warned me that they might bruise after treatment 5. 

    I know I should be glad that I only have 2 more to go, but i'ts hard getting through this one.  And I know I'll get over this in about a week- I just feel like I need support right now.    

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    Hey RNKaren - I got teary when I read your post because I think we have all been there no matter how we try to keep our chins up. I will keep you in my prayers. It will get better!

    Karen

  • ggrose
    ggrose Member Posts: 29
    edited June 2008

    Hi everyone.  Hope that everyone is good with minimal SE's today.

    I'm scheduled for TX 2 on Thursdady and I'm starting to get worried again.  TX1 wasn't too awful.  I avoided nausea but had the achy/bone pain and grunge mouth.  The onco gave me a script for Darvoset to help with the pain.  Now I'm worried that the pain killer might trigger the nausea.  Guess I'll have to play it by ear.

    There really isn't anything easy about this process, is there?  Dr's office called on Monday to say that I need a PET scan.  Something on my sternum looked "suspicious" on my bone scan.  Only the PET scan can determine if it's something to be concerned with.  PET scan is scheduled for Friday morning following TX 2 Thursday afternoon and before Neulusta shot.  Sure hope that the SE's hold off long enough tohave the test.

    I didn't really think that this would be easy (OK, maybe I hoped it would be)  --   I'll be glad when this part is over!

    Congrats to all who are finishing up with their chemo.  I hope that the SE's pass quickly so that you can move on to the next part of the journey. 

    Edited for RNKaren - I'm so sorry.  I'll keep you in my prayers.  Hope that you find peace and comfort soon!

  • beegirl
    beegirl Member Posts: 53
    edited June 2008

    catlover44: I didn't get bone pain from the tx or the neulasta shot, that I recall (I may be in denial!). My back hurt a few times but that was all. I take a prescription allergy med like claritin so that may have helped to prevent bone/joint pain. One interesting side effect was the lack of arthritis pain in my foot during chemo and even now. Can't quite figure that out.

    Karen - Sorry you're having a rough time. Can you switch your next tx to Wed. so that your low days are on the weekend? That's how I did mine so that I could work on Thursday and Friday and have my slowest days on the weekend. We're all pulling for you!

  • Kfalls
    Kfalls Member Posts: 67
    edited June 2008

    ggrose - my bone pain was really bad so they cut down on my neulasta shot - I still made plenty of white cells, but had little to no pain. You might want to ask your doctor about it. It made a world of difference for me. Try not to worry too much about the PEt scan - I had suspicious areas that they scanned and it is just arthritis. I guess getting old is the better of the alternatives. :)

    Take care,

    Karen

  • robink
    robink Member Posts: 60
    edited June 2008

    RNKaren - I have prayed for you.  Perhaps you should considered taking off the remainder of the week.  And the idea of changing your treatment date to mid week in order to give you time to bounce back is excellant.  Think about it.

    Let others do for you right now.

    You will get through this!

  • sharons
    sharons Member Posts: 177
    edited June 2008

    Revkat - Glad to hear you are finishing up today!!!

    RnKaren.....  You can do it I know...it is great we have this place where others understand.....

     Everyone hang in there

    sharon

  • Tigwin
    Tigwin Member Posts: 115
    edited June 2008

    Hello Ladies, Sorry to hear about the tough times.  On day 6 after treatment #4.  Biggest side effect is being tired.  Kind of pushed it when I was on decadron so I may be paying the price now.  I think I was trying to pretend I did not have cancer.  For those of you that have been following my friend Jimmy's health issues.  He was flown to a fabulous hospital in LA for a heart transplant.  Which is great care and great news.  It is now wait and see for the right heart transplant.  Makes is sound easy what we are going through when you think about sitting in a hospital bed for six months to a year just waiting for a heart.  He is still sedadted but we hope to have him breathing on his own and getting prepared for his transplant.  Thanks for all that prayed for him.  You can continue to do so if you have some room.

    Okay...have a SE Free day !!!!

  • catlover44
    catlover44 Member Posts: 78
    edited June 2008

    beegirl, I wonder what the connection is with allergy meds and reduced or no bone pain?  I take Benadryl every night lately to help me sleep....maybe that helps.  I won't worry unless I have to.

    RNKaren, I hope you're feeling stronger & happier when you read this. 

  • danismom
    danismom Member Posts: 8
    edited June 2008

    Hi everyone, I am on week 3 of my treatment and am really tired again for some reason.  Had blood test last week and wbc was down but everything else was ok.  Have my 2nd tx next Tuesday.  Anyone else scheduled for the 17th? 

    I just wanted to thank everyone for all the support prior to the first tx.  Everyone was right, it wasn't nearly as bad as the anticipation and anxiety before tx.  

    I do have one question......when do the taste buds go back to normal?  Everything I drink has a wang to it.  Certainly does ruin a good Coke!   

  • SQK
    SQK Member Posts: 23
    edited June 2008

    Hi everyone... it's been a while since my last post.  My schedule is nuts.  For those worried about being able to work thru the treatments, I can say that I've been able to do that without too much trouble.  I do have a desk job, so the physical demand is low.  If I had a job where I was on my feet all day, it would be more difficult.  But I wanted to encourage anyone out there who might be concerned about work. 

    I had my 4th (and last) Tx on Thursday, June 5 -- my 26th wedding anniversary!.  The tx went fine.  They even dripped the Taxotere at full rate right from the start, and I had no issues.  Since my Hemoglobin counts are still low --- they've been hovering around 9.8-10.2 throughout my treatments --- I got a shot of aranesp right in the port before I left.  Even so, the fatigue this time has been tough.  I went to work on Friday, and didn't feel too bad.  But by Saturday, I was zapped.  I think the excessive heat we've had in the northeast probably made things worse.  I'm feeling much better today.  Good thing too...my son's high school graduation is tonight and I wouldn't miss that for anything!  He is autistic and has made tremendous progress recently.  He has transitioned into a part-time job that he'll continue after graduation.  I'm just so proud of him.

    I'm starting rads next week.  Even though I had a bilat mast, the docs were concerned about a clean margin.  So they're going to radiate the chest wall, and I was told this would reduce the risk of recurrence there by two thirds.  I should finish rads by mid-July and then I can think about recon.  After meeting with the ps, I know I'm going to need latissimus dorsi flap surgery on both sides, since I'll have had rads on both sides now.  (On the left side in 2006, and now on the right side.)  Not excited about more surgery; need to give this some thought.

    I'm so encouraged reading the posts from those whose hair is coming back.  The hair loss part of this whole thing has been a challenge and a nuisance.  It'll be so nice to have hair again...brown or gray...straight or curly...whatever it is, I'll just be glad to see some on my head again!  Laughing

    This is such a great thread.  What a wonderful group of ladies you all are. 

    Hugs & prayers, 

    Sue K. 

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited June 2008

    Has anyone ever postponed a treatment?  Is there a risk in doing that?  My ps wants to see if the oncologist can postpone my treatment scheduled for tomorrow since I am still having redness on my breasts.  The only problem is my oncologist never returned his call today!  I am just curious if anyone has ever had a reason for postponing and what the oncologist said about it?

  • RNKaren
    RNKaren Member Posts: 32
    edited June 2008

    Thank you all so much for your prayers.  They were answered because I'm feeling better this evening:)  I'm so glad I found this website.  Tomorrow will be day 6, days 3-5 are the ones that really get me down. 

    I have my treatments on Friday so I'll be good to work my weekends, days 1 and 2 (Sat and Sun) are good, on Decadron.  I don't like to call in on my weekend, we're already short to begin with. 

    Love to you all, and prayers for Jimmy.

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