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Comments

  • MsKarin
    MsKarin Member Posts: 105
    edited July 2008

    Ok, still confused. Does that mean if my counts are back up by day 10 - 11 (picked those because they fall in middle of day 9 and 12 of my CBC's) that my counts could go back down?

    Enjoy the day, Karin

  • MoinTexas
    MoinTexas Member Posts: 13
    edited July 2008

    catlover, here is what my onc and nurse told me when my neutrofils got to 346 on Thurs. 7/3.  Take the Neupogen shots daily, start on the antibiotics (I'm doing Cipro because levaquin gave me the tendon rupture symptoms they warn you about), and be careful in crowds.  If  you go, get a little medical mask or two and wear them in crowds as I was advised to do (I went to the grocery store today that way and it renders  you invisible, I found); take your hand sanitizer and use it all the time after  you touch something and before you eat and just eat well cooked things.  Take your temperature frequently but not after you've drank anything hot or cold.  And be ready to get help if it goes up.  Hope your fever goes down and all is OK.

    Marilyn 

  • otter
    otter Member Posts: 757
    edited July 2008

    Karin, I wish I knew.  I really don't understand the timing of the wbc nadir.  I thought I did, but it's slightly different with each individual chemo drug; and when there are different combinations, I don't know how to predict the timing.  My guess is that if your wbc is low on days 10-11 and then goes back up, it won't go down again during that cycle...but I don't know for sure.

    I read some research papers that compared the timing of the wbc pattern with Neulasta and with Neupogen, but the chemo used in those studies was Adriamycin & Taxotere.  The lowest point was 7 days into the treatment cycle, which was quite a bit earlier than I had been told my nadir would be.  My onco didn't check my wbc mid-cycle--she only checked it on the day of each treatment, to be sure it was OK for that treatment.  So, I guess I really don't know what it did in between treatments.

    I agree--it's all very confusing.

    otter 

  • catlover44
    catlover44 Member Posts: 78
    edited July 2008

    Well, it is all confusing...and frustrating.  I wimped out and cancelled our vac. reservations today--there's just too much unknown with these drugs lurking in my body and not knowing if I'll wander into a room full of sickly people, blah blah blah....  There's no need to spend all that money and not be able to really have a freewheeling, fun time!  Besides, I'm still hivey and the backs of my legs look horrific....wouldn't want to subject any innocent strangers to that sight!  Happy Sunday, everyone.

  • TennesseeMichele
    TennesseeMichele Member Posts: 26
    edited July 2008

    catlover,

    I'm so sorry about the cancelled vacation.  Very frustrating.  Hope you can make plans for an even better time soon.

    Michele

  • slortiz
    slortiz Member Posts: 142
    edited July 2008

    Catlover,

    You are doing the right thing, but a terrible disappointment, I'm sure. I'm going through the same thing now myself. I was supposed to help my daughter drive back to San Francisco on Monday, but after the low WBC scare early in the week, the Levaquin, and now (me too!), hives, I'm re-thinking it too. I was looking forward to spending a few days there, but think it might not be a good idea. Not up to the six hour drive and then taking the plane home. Planes are the germiest thing there is.

    Have a nice vacation at home. Sometimes that's even more fun!

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Hi Catlover,

    I think you did the right thing also.  I cancelled two vacations I had booked - one for the week after my chemo will start (this coming Tuesday) and the other in September.  I just didn't want another thing to worry about and my dh would rather wait till treatement is over and have a celebratory vacation. 

    I asked my onc nurse about Neupogen or other white cell stimulators, but she says they are quite conservative with drugs, only using these when needed.  Seems they do the WBC the day before treatment and if they are too low, will postpone the treatment and give you a white cell stimulator.  I am a bit nervous about this, as I would like to know mid-cycle how I'm doing in terms of WBC (and also platelets, as they will reduce bleeding).  It is my understanding that the WBC count goes down blocking cell division at a specific stage (that's why the older ones stay around for a week or so as they are no longer dividing and are just at the mature stage ready to help us fight infection); once the less mature cells are killed by the chemo, our counts go down; then the precursor cells kick in and start dividing (after the chemo is already out of our systems) and our cell counts go up until we get hit again.  I think the timing of this varies a bit by the specific chemo used as well as by individual factors.  I used to work in hematology and that seems consistent with what I remember.

    Gina_M 

  • Kfalls
    Kfalls Member Posts: 67
    edited July 2008

    So sorry you all are cancelling vacations.  I am just on the other side - 2 weeks out from last treatment and planning a huge Christmas family vacation in Riviera Maya on the caribbean side of Mexico.  No - probably can't afford it, but this whole experience has altered my state of mind.  My family needs this after the chemo experience.  Maybe keep that in mind and start planning a post-chemo shebang!  It will give you something to look forward to and believe me I know that is hard to do during this process.  Keep your chin up!

    Karen 

  • otter
    otter Member Posts: 757
    edited July 2008

    Catlover, I'm so sorry you had to bail out on your vacation trip.  It's probably a good thing, though--this way, you won't need to be so worried, and neither will your dh.  It won't be long before you can get back to doing those types of "fun" things again. 

    Karen/Kfalls, my dh and I are planning some trips, too.  This coming week, we'll be traveling to visit his family.  Then, we'll be back home for a little while, after which we'll be visiting my family.  Each of those trips entails a drive with at least one overnight stay on the road.  Other than baldness, disappearing eyelashes, and fatigue (see below), I think I'll do fine.  I am a bit concerned that, after all these weeks of being self-absorbed and concerned about my health, I'll not be very patient with the petty conflicts that are a part of "normal" family life.

    Even at 4-1/2 wks after my last chemo tx, I still tire easily and my legs get weak pretty quickly.  I suppose I'm still anemic, and I know my lack of exercise during 12 wks of chemo didn't help with my endurance.  I am hoping that, just because I'm "through with chemo," people won't expect me to be able to keep up as well as I normally would.  Can you tell that I'm just a little bit concerned about getting back to reality?

    I do think a beach trip would be nice, though.  OK, either that or a trip to the mountains.  I guess I'm not too picky, and I guess it's good that I'm finally feeling like getting out and doing things again!

    otter

  • Tigwin
    Tigwin Member Posts: 115
    edited July 2008

    Otter...take your time going back to normal !!  You are still building up your immune system and no one would expect you to be even close to normal...not that any of us are normal anyways. LOL.  If you recall I had cancer 19years ago as well as now and I have pulled what my family refers to as "The Cancer Card" for 19 years.  If I am tired or not up to par....I just bow out and go rest.  My immune system has been a bit weakened over the  years due to my first battle and I try to come first when I need to.  Go on vacation with your limits....no one elses~~ 

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited July 2008

    Does anyone have trouble with their body temp?  It seems like I can't get comfortable since I had treatment #3 last Wednesday.  I am either cold or sweating.  My bald head seems to be the worst part - it keeps breaking out in a major sweat.  No fever and it doesn't last long but it's getting really annoying!

  • sandym
    sandym Member Posts: 70
    edited July 2008

    Debbiem - you're probably having hot flashes. Of course,once the heat is past, you're damp and chilled. It wakes me several times a night.  I've dealt with them for years.  First during menopause, then while I was on Arimidex for 5 years after my first ca dx. I stopped the Arimidex in March before my surgery and chemo and the flashes lessened.  It was nice but they did return with the chemo.  I know what you mean about the wet head.  At least it takes only a paper towel to dry off and doesn't ruin my hair style as it did when I had hair. 

    I'm anxious to know how long the flashes continue now that I'm through with chemo. None of the recommended remedies has ever worked for me in the past, medications, deep breathing etc. And now I'll be starting on Tamoxifen - more hot flashes.  Oh well.  Will this ever end!  

    Are there any ideas out there on reducung the incidence.  Black cohosh has been recommended but isn't it contraindicated in BC?

  • Kfalls
    Kfalls Member Posts: 67
    edited July 2008

    Sandy - if you find out anything that helps witht the hot flashes, let me know.  They have been so intense for the last 3 weeks that I can hardly function.  5 or 6 times a night and at least 10 times a day.  My onc nurse said that when you are thrown into menopause chemically it is like hitting a wall.  I have a call into my ob to see if he can recommend anything because I have to go back to work in 5 weeks and can't imagine dealing with this.

    Otter - when did you eyelashes start falling out?  I still have mine and was so hoping to keep them (the only hair left on my body.)  :)

    Karen 

  • Gina_M
    Gina_M Member Posts: 108
    edited July 2008

    Hi SandyM,

    I think the active ingredient in black cohosh is a plant estrogen and because of similarities to human estrogen (the reason it works for us) it is not recommended for any ER/PR+ breast cancers (not so sure about the ER/PR-).  I had an early menopause (age 40), took HRT for 15 years (possible link to my current BC?), then went off the hormones cold turkey (do not recommend this approach) 5 years ago.  I've had hot flashes and night sweats ever since.  The only real help I've had has been to keep a tall glass of ice water next to my bed, and to have a fan (I have a tower-type that is directed on me) that has a remote control so you don't have to get out of bed.  I timed mine...they last about 3 minutes once they start, but I can shorten them if I catch the beginning and drink the water and turn on the fan.

    Gina_M

  • terridwo
    terridwo Member Posts: 31
    edited July 2008

    Catlover - Sorry to hear about your vacation.  Hope you have a good week anyway.  Nice dinners and shopping may do the trick. 

    Debbie & Kfalls - I too will be thrown into menopause and was wondering when to expect symptoms of that.  Haven't seen much on the subject and what else to expect with this.  I'm 10 days out of 1st tx.  Talk about being kicked while down!!!!  When did the hot flashes begin?

  • collector
    collector Member Posts: 72
    edited July 2008

    I'm "flashing" a lot, too. I hate waking up with my gown and undies soaked and of course with all the water I'm drinking I'm always wondering if I peed the bed!  I'm Day 8 from Tx 3 and I think everything is a little worse this time around except I don't have more head sores.  I ran a fever all day yesterday but it never went above 99.9 so I didn't have to call in any advice.  My normal temp has been varying between 94.8 and 96.8 so I am watching carefully.  I did get Neulasta on Day 2 but am toatlly confused about Neulasta SEs and T/C SEs.  I was on HRT prior to my diagnosis and so the flashes cold be coming from all kinds of things.  My guess is that this will all continue for me since I am slated for Femara following chemo.  I cannot live without the fan right next to me.

  • otter
    otter Member Posts: 757
    edited July 2008

    collector, at first I was blaming all my aches and pains on Neulasta.  Then I realized some of the pains were coming too early for Neulasta to be the cause--so the Taxotere must have been contributing.  I finally figured it really didn't matter what was causing me to hurt, because it would go away around day 8 regardless.

    Karen/Kfalls, I honestly don't know when my eyelashes started to fall out.  I just noticed one day that about half of them were gone, and the ones that were left were short and bunched together.  I think it was some time midway through tx #4, which was earlier than I had heard it would happen.  I hadn't been wearing any eye makeup (mascara) except to go to my chemo infusions and on rare shopping trips (vanity?).  So, I wasn't paying much attention until I was standing there one day in front of the mirror, holding a mascara wand and trying to figure out where everybody went.

    Almost all my lower lash hairs have disappeared completely--I think there might be 3 or 4 left on each lower lid.  I also noticed today that my eyebrows are getting thinner and there are more bare patches than there were last week.

    I can deal with the eyebrows, but I still haven't figured out what I'm going to do when my lashes go completely AWOL.   I refuse to wear false lashes--I think they look like centipedes (or is it millipedes?).  I wore eyeliner once, in a fleeting moment of insanity when I was in college.  It was the only time in my life that I could have been mistaken for a hooker. So, I don't think eyeliner is in the cards for me, either.

    All of you who are getting hot flashes--I'm sure this is no comfort, but I'm having them, too.  I went through natural menopause 5-1/2 years ago, and had mild to moderate flashes for about 3-1/2 years.  I went through the whole routine--layers of clothing, layers of bedding, lots of cotton fabrics to stay cool, lowering the thermostat a few degrees, strategically placed fans...  I also learned there were certain things that would trigger a flash, like a glass of wine, an embarrassing comment, and an emotional stressor (something I was afraid or reluctant to do).  They were always worse in the summer heat or in a room that was too warm.  I never considered them intolerable, though.  They were a nuisance, and sort of weird, but nothing that caused me any anguish.  Like I said, the flashes became milder and occurred less often, until finally I realized they had stopped.  I never took HRT or used any kind of estrogen supplement ("natural" or otherwise).

    When I was about halfway through chemo, I noticed that I was having very mild hot flashes again.  They weren't as frequent or as severe as the natural menopause ones, fortunately.

    Now I'm on an AI--I started Arimidex 2 weeks ago.  So far, I haven't felt any SE's that I could blame on Arimidex.  It's still early, though--I think it takes awhile before the natural stores of estrogen are depleted.  I've read on these boards that AI's cause hot flashes, but I don't expect them to be as severe as they were with menopause.  We'll see, I guess.  I'd rather be optimistic, since I'm determined to stay on an AI for the full 5 years (if not longer).

    Tigwin, thanks for the encouragement about recovery from chemo.  I'm frustrated that I tire so easily, because otherwise I feel great.  This morning, for instance, I spread pine straw mulch on half a dozen rhododendrons, and then I had to come inside and rest.  I guess I'm just concerned that other people will expect me to be "back to normal," and instead I'm going to be hanging back, slowing things down, like an old grandma.  Oops.  I am an old grandma! 

    otter 

  • Tigwin
    Tigwin Member Posts: 115
    edited July 2008

    Hot Flashes..

          I too am getting hit with being cold or hot every five minutes. I feel like my temperature gauge

    is broken.  Sleeping has become a big issue since the heat or cold wakes me up every hour or so.  I know we will get through this but it really is my worst side effect.  Couple of things to share.  I think sugar makes them come more often.  Not 100% sure on this but the worst nights have been when I ate a snack that was sugary. 

         So I am thinking to myself, ok, make me gain weight, give me constipation, then the opposite, blur by vision, make my nails weak, remove my breasts, now take my SUGAR!!!! What is this sick disease !!! LOL 

         One of the things I have tried and think I have been given a bit of relief is to take one 400iu capsule of Vitamin E per my oncologist. I am currently going through chemo so you cannot take any more then that if you are going through chemo and some onc's may not want you to take at all so run it by your onc. 

        Cold water by the bed is good for the night.  SharonS shared with me to turn your pillow over when you are hot and the other side is cool.  That is an amazing trick at night.  That has helped me a great deal. 

         Share any tips you all come up with...good luck

  • otter
    otter Member Posts: 757
    edited July 2008

    Here's an update of our treatment calendar:

    ++++++++++++++++ 

    Week of July 7:

    Mon. July 7--AMANN (#1)

    Tues. July 8--kathy (kathy's_hubby, #6-done!), craftygal (#4-done!), SharonF (#4-done!), karebear43 (#3), danismom (#3), JulieC (#3), Gina_M (TCH #1), SDM (#1)

    Wed. July 9--Genieruth (#4-done!), MsKarin (#3), tkone (#1)

    Thurs. July 10--cbme123 (#4-done!), Rosario (#4-done!), MoinTexas (#2), SherriM (#1), tbuskirk (#1), Moonchild (TCH #1 of 6)

    Fri. July 11--lilwebb (#4-done!), lalani (#1)

    Week of July 14:

    Mon. July 14--Kim1965 (TCH #1)

    Tues. July 15--dellmonica (#6-done!), deecsw (AC #3 of 4 dd), pmwelser (#3), texasmom (TCH #3 of 6),

    Wed. July 16--Lenny (#5 of 6 dd), catlover44 (#3 of 6)

    Thurs. July 17--Tigwin (TAC #6-done!), RJ62 (#5 of 6), slortiz (#2)

    Fri. July 18--RNKaren (#6-done!), nmjohn (#4-done!), wdornan (#3 of 6), LizC (AC #3 of 4), chloecat (#2), terridwo (#2), gk2bc0 (TCH #1)

    Week of July 21:

    Mon. July 21--collector (#4-done!), SusanDL123 (#4-done!), katiesmommy (#4-done!), Stickerlady (#3)

    Tues. July 22--

    Wed. July 23--Boo307 (TCH #4), VBG (#3)

    Thurs. July 24--rogam (#4-done!), Debbiem425 (#4-done!), ggrose (#4-done!), youlooklikeyouneedabeergirl (#4-done!), judianna (#4 of 6), BBLady (#3)

    Fri. July 25--

    +++++++++++++++++

    If my notes are correct, we have a lot of graduates this week:  kathy (kathy's_hubby), craftygal, SharonF, Genieruth, cbme123, Rosario, and lilwebb.  Gold stars for everyone (once you're through those last weeks of SE's, of course)!

    Let me know of any additions or corrections, please. 

    Edit:  I've added AMANN to our list; her first TC treatment was today (7/7). 

    otter 

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited July 2008

    Thanks for all the tips - just knowing that I am not the only one having trouble controlling my body temp helps.  The strange thing is it is usually just my head that gets sweaty.  The rest of my body is usually okay.  The sugar making it worse could very well be contributing to the problem - my taste buds are so off but I am craving sweets - seems to be what tastes the best.

    Today is the first full day of work that I have missed due to chemo (other then the actual chemo day) I just felt so light headed and knew I would not be able to get much done if I went in.  I am planning to go back in tomorrow. 

  • Debbiem425
    Debbiem425 Member Posts: 27
    edited July 2008

    WOW Otter  - seeing that post felt so good.  Even though it's two weeks away seeing DONE next to my name sure feels good!!  Thanks for keeping track for us.

  • slortiz
    slortiz Member Posts: 142
    edited July 2008

    Here's the new me, 12 days post Tx 1!. My daughter talked me into cutting the 3 years of growth off (sob--down past my shoulders), but it is cool for summer.

    Only complaint at this point is hives. My energy and appetite are good and I'm pretty much back to normal. Hope everyone has a good week.

  • otter
    otter Member Posts: 757
    edited July 2008

    Sandra, nice 'do!  I've decided I'm going to wear my hair a lot shorter once it grows back (if it grows back!).  Mine has always been between chin and shoulder length, but I'm getting used to not having to blow it dry or curl it.

    Tell your onco about the hives (if you haven't already).  I had hives during round #2, and nobody was worried about them but me.  Still, they told me to take Benadryl; and then they changed the antihistamine they were using in my pre-med i.v. from Zyrtec to Zantac for round #3.

    otter 

  • sandym
    sandym Member Posts: 70
    edited July 2008

    Congratulations to all those finishing tx - almost back to normal.  I do keep wondering what normal will be from here on in. Thanks for the update, otter.

    Hot flashes - Thanks Gina_M.  Sounds like the black cohosh is out. I don't want to bore you with a repeat of my post several hours ago but I will add I take clonidine at night and think it's helps.   It's prescribed for flashes as well as reducing blood pressure. I also started taking Ativan at night.  My onco was concerned I wasn't getting enough sleep and although I still wake a couple of times hot and sweaty, there is an improvment. I'm not thrilled with all the meds but sleep is important too.   I have tried Effexor which helped but I didn't like the side effects.  If I go too heavy on chocolate which I love and/or salt, I experience more flashes.  Hope this helps.

    Vacations - We took a chance and accepted our son's invitation to join him and his wife (of one year) on the little Maine island where they were married.  We hated to horn in on their anniversary but they sincerely seemed to want us and it was only for 2 nights of their week.  Her family members were on the island too so I felt a little less guilty.  We were in close contact with a lot of people and it was day 10 - 12 of tx #4 but it was the best medicine.  Just riding over the state border was liberating and the weather was so much better up there - cool and dry.  I have to admit I have a slight sore throat so I hope I won't be sorry but in the long run, it was just what I needed.  Besides, we came home to 3 young grandchildren who have to be snuggled and kissed regardless of germs.

    Prayers for a restful, cool and dry evening.

    Sandy

    .

  • sharons
    sharons Member Posts: 177
    edited July 2008

    Hi all - Guess we can know that we aren't alone in the hot flash dept...Sandy - when I have a long stretch of bad nights, I too take the ativan and get some sleep...yesterday morning I didn't even hear my husband....he said I was sound asleep so he didn't want to bother me...

    I slept most of yesterday...just felt bad all day...kind of like a post chemo day 4...don't feel too great today...but need to go pick up my premed and go to the dentist....I had to postpone it a couple of months ago...but onc said to go ahead and go now

    I think next week I don't have ANY appts...first week since feb 4th....

    Also they say stress and emotions can bring on hot flashes too...so lets all stay calm....

    Sharon

  • collector
    collector Member Posts: 72
    edited July 2008

    I'm Day 9 from TX 3 and for the last 2 days have been getting sudden radiating and stabbing pain in my lumpectomy incision as well as the scar tissue where the injections were done for SNB.  The incisions look more livid but there is no additional swelling or puffiness.  I had them come on while at a stop sign yesterday and must have looked pretty stupid grabbing my breast and shouting OWIE, OWIE %$#^* as they came and went.  It's disconcerting to say the least.  I'm ten and a half weeks out from the surgery and my affected breast is really starting to dimple and look forlorn.  I'm guessing the pain is part of nerve healing but if anyone has anything else to tell me, please post.  I am feeling much more tired this time around and also spending a lot of negative energy anticipating the last chemo treatment and then the maze of radiation.  To think that in February my biggest hassle for summer was an ingrown toenail problem that would preclude me from wearing open toed shoes for most of the summer!  HAH!  I should have been so lucky!

  • MsKarin
    MsKarin Member Posts: 105
    edited July 2008

    Collector,

    I too have had the stabbing pain to the breast. Mine has been after both treatments on day 3. Never lasted long, just a few times and then it was gone. So if it goes on schedule I can look forward to it happening again this Friday.

    As for your ingrown toenail problem.  Bet it's not as bad as mine. I had one removed on the big toe about 20 years ago. Wasn't suppose to grow back but it did. After all these years it is so ingrown that both sides have come together and touch each other. The end of it is now rounded. About the size of a pencil. So for many years I have avoided open toed shoes and sandals. Last year I put polish on them and it didn't look as bad (still bad though) but wore sandals anyway. Decided to dress for me and comfort, not what people felt comfortable looking at.

    God Bless my DH. He gets to see what you all don't. Me with out dentures in mouth, no hair, and my funky feet. And let's not forget all my wrinkles that the avatar doesn't show. My face has more lines then a road map of my town.

    Enjoy the day, Karin

  • beachmom13
    beachmom13 Member Posts: 85
    edited July 2008

    Collector - I also had stabbing pain at the site of my lumpectomy and and after each treatment and both looked very angry.  It went away after about a week.  I started rads yesterday and it is  a piece of cake.   The scan and orginal marking took about an hour.  The simulation and first treatment yesterday took about 20 minutes.  Today's treatment took less than 5 minutes total in the room.  That included setting up the machine.  All you have to do is lie there and be cold. (the room is freezing and you're half dressed).  Good luck.

  • collector
    collector Member Posts: 72
    edited July 2008

    Lee, thanks for the reassurance.  I know I'm hyperventilating in advance about this but my onc is just not into letting me know what to expect or to even let me know what scans, consultations or plans she has in mind for me.  Can you tell I am a CONTROL freak?  Don't even mention the NN (new normal) idea.  I am so far from that reconciliation.  Today I've only had the stabbing pains once.  When I looked back at my notes from Tx 1 and 2, I am pretty much on time for what I felt the last 2 days.  OK- back to making some sloppy joes so I have dinner for 2 nights under control.  I hate them but I can't taste anything anyhow and DH LOVES them and is very hard to cook for. 

  • TennesseeMichele
    TennesseeMichele Member Posts: 26
    edited July 2008

    Collector - I had the stabbing pain at lumpectomy site, too.  It seems like they got worse as the tx's went on. 

    I've decided to put off rads until August.  I'm now day 17 (I think) after tx 6 and I just want a break before starting the next step.

    I'm seeing a bit more fuzz on top my head and my eyebrows are beginning to return.  Nothing new with the lashes though.

    Glad to hear others are experiencing the same hot flashes as me.  (Whoops, edited to correct that statement.  Not glad that ANYBODY is experiencing them!  Just glad I'm not alone!) They sure drive me crazy, even if they're not as intense now as they were at the beginning of chemo.

    Karin, you have a cute picture!  I'm not brave enough to post one.

    Sandy, glad you had a nice break out of town with your son.

    Off to fix lunch for the kids.  Got lots of fresh fruits/vegs at the farmers market this morning so that's helping me to eat right.

    Michele

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