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Comments

  • Tigwin
    Tigwin Member Posts: 115
    edited May 2008

    Robink,

          Okay there are no accidents in life....You message is exactly what I needed to read today.  I really need some extra help today. I was scheduled to leave for vacation today but I recieved a call from my best friend at 4:30 am telling me not to come as she was on her way to the airport to fly here as her brother was admitted into the hospital for heart failure.  Four of us were to meet today instead we are all praying for Jimmy, to recover.  It does not look good but Jimmy is a fighter.  He has been off and on the heart transplant list for the last five years.  He is only 41 years old.  I would ask each of you if you have some extra room in your prayers to please pray for Jimmy.  He is a wonderful man, his wife just had their second child two weeks ago.  I know we are all good prayers so let them flow.  Thank you all for your support.  I will keep you posted.  We need a miracle here and I think we can get it.  Thanks.

  • robink
    robink Member Posts: 60
    edited May 2008

    Tigwin,

    Prayer has been offered for Jimmy, his family, you.  I'm so sorry for him and that your trip was cancelled.  To honor them during this uncertain time do something fun you know they would enjoy and share that memory with them. 

    Sincerely hopeful,

    Robin

  • sharons
    sharons Member Posts: 177
    edited May 2008

    Tigwin - Jimmy is in my prayers and I sent his name along to some of my friends who are prayer warriors....

    Sharon

  • Tigwin
    Tigwin Member Posts: 115
    edited May 2008

    Thanks for the prayers...keep them coming.  Jimmy is on a breathing machine and having a very hard time.  We are all praying that tomorrow brings some promise and he is able to turn it around.  Thank you again for your prayers.

  • Kfalls
    Kfalls Member Posts: 67
    edited May 2008

    Tigwin - Our family's prayers are with Jimmy, his family and yours. One of my favorite sayings is "If Got brings it to us, he will see us through it."

    Karen

  • Kfalls
    Kfalls Member Posts: 67
    edited May 2008

    Tigwin - Our family's prayers are with Jimmy, his family and yours. One of my favorite sayings is "If God brings us to it, he will see us through it."

    Karen

  • Boo307
    Boo307 Member Posts: 4
    edited May 2008

    Otter,  Thanks for keeping track of everyone.  You can add me to the list.  My first treatment, Taxotere, Cytoxan, Herceptin, was May 20th and every three weeks.  I'm ten days from the first Tx and feeling great.  What a relief that after getting through the first three days, I felt better each day.

    To bring up a delicate subject, I read that the Taxotere is excreated through the digestive tract, as opposed to Cytoxan that is excreated by the urinary tract.  No wonder I have had burning bowel movements.  Its easy to drink a lot and avoid burning urine.  Has anyone come up with a way to minimize burning bms?

    Boo

    Dx 3/18/08, IDC, 1.8 cm, 0 node, Stage 1, Grade 3 ER-/PR-/HER+

  • robink
    robink Member Posts: 60
    edited May 2008

    A question for anyone:  any idea how many weeks following final chemo that my onco might give the medical release for reconstructive surgery? My final chemo will be July 3.

    Originally I had decided to wait until next year (I had my mastectomy April 7, no expander and no rads) but am having 2nd thoughts and want to return to physical "normal" sooner than later.

    Thanks for any knowledge you care to pass along...

  • Boo307
    Boo307 Member Posts: 4
    edited May 2008

    Robin,

    My oncologist said I could have surgery 3 to 4 months after ending chemo.

    Boo

  • Tigwin
    Tigwin Member Posts: 115
    edited May 2008

    Hello, Good news on my friend Jimmy, he can have a heart transplant...yeah for all your prayers this is what we have been praying for for the last several years.  They rule him in then they say he is too well.  Finally now that he is very ill they have ruled hime back in.  This is such a gift we are all thankful.  Keep the prayers coming to guide his doctors.  thanks to all of you.

  • sharons
    sharons Member Posts: 177
    edited May 2008

    Tigwin - Great news about Jimmy, I have been thinking about Jimmy and his family all day as I traveled to appts....It is good you are there for your friends.

    Sharon

  • debap
    debap Member Posts: 51
    edited May 2008

    robink:  I finished chemo 3 weeks ago and had surgery 2 days ago to switch my expander for an implant.  I feel great!  My PS said he just needed to wait until my counts were back to normal.

    Tigwin:  I hope all goes well with Jimmy, I'll definitely keep him in my prayers.  I can't believe he is only 41!  I didn't want to mention anything about flying the day before you were supposed to leave, but do you have a compression sleeve for flying?  I didn't know anything about lymphedema and flying until my PT happened to mention it.

    Debbie

  • debap
    debap Member Posts: 51
    edited May 2008

    Is anyone starting tamoxifen soon?  I just had my prescription filled but am a little scared b/c my onco mentioned a danger of blood clots.  Did anyone hear this or about any other side effects?  My onco is a nice woman but she often contradicts herself so I don't always feel that I am getting reliable information.

    Debbie 

  • SusanDL123
    SusanDL123 Member Posts: 21
    edited May 2008

    Hi all,



    I am on Day 12 of treatment 1 and have been feeling great for 3 days now. Metallic taste gone 3 days ago and I had coffee this am and yesterday Tasted OK.



    My current obsession, of course, is my hair and when it will start to fall out. This am my scalp felt a little sore. I am picking up my wig on Wed and am afraid my hair will fall out before then. I have bought some caps. I plan to work Mon Tues & Wed. Does everyone have the same signs that hair is about to start falling out. What are some of the signs.



    Thanks for putting me on the schedule list. I feel like I really belong to this board.



  • debap
    debap Member Posts: 51
    edited May 2008

    SusanDL123:  A couple of days before my hair started falling out it felt brittle and looked lifeless.  I had a hard time styling it.  It just comes out in clumps when you comb it.  I shaved my head as soon as it started falling out b/c it was driving me crazy.  I didn't wear a wig, just the caps.  I know it is hard, but its inevitable with this chemo.  Hopefully it will hold out until your wig comes in.  One of the nurses suggested not washing, combing, or styling your hair too much to make it last a little longer. 

    Debbie 

  • gramadeb
    gramadeb Member Posts: 66
    edited May 2008

    Hi SusanDL - my hair started really falling out on day 17. My scalp started getting sore a few days before. I started noticing more hair falling out when I showered. I knew the morning of day 17 that is was going to be the day. My hair was so dull and lifeless that morning - just hung flat with no body. As the day went on more started falling out. My husband buzzed my head that night because I was sitting by the computer pulling it out and crying. I am guessing I would have had hair for a few more days had I not shaved it - so my guess is you may be OK with getting your wigs on Wed. Having hats will be a good backup. I bought 2 wigs but couldn't wear them - have stayed with hats and scarves.

    I have never been completely bald - always have had a fine coating of thin fuzz.  Not that it helps my appearance at all - but does help emotionally.

    Losing your hair is difficult - for me it was easier to have it shaved than to watch it fall out and see how lifeless it looked. My dh was wonderful and supportive. Now that I am done with chemo, he teases me that he is going to have to get use to me with hair again!

    Good luck!

    Deb

  • otter
    otter Member Posts: 757
    edited May 2008

    Hi, everybody!

    Tigwin, that is such good news about Jimmy.  I hope they find a donor soon.

    debap, yes, blood clots are a known risk of tamoxifen.  Here's a good website in Q & A format, that provides some info on tamoxifen:

    http://www.cancer.gov/cancertopics/factsheet/therapy/tamoxifen

    SusanDL123, sounds like your hair is about to go.  Mine got itchy around day 12, and I could pull a few hairs at a time on day 13, but by days 14 and 15 the hair was coming out in clumps.  By day 17, it was very, very thin and I would have looked really weird (sort of like an alien) without a scarf or cap covering my head.  By day 21 I was pretty much bald--nothing left but a thin fringe around the sides.  All that happened in a very short time, and that was without shaving or "buzzing" anything.

    Today was the first time I went somewhere that people would recognize me, since I lost my hair.  I've been to the grocery store and the mall wearing a cap or short scarf, but this time I went back to the department were I used to work.  I wore a nice scarf (one of the 35-inch "tlc" scarves I got free from the local ACS office).  Two people I've know for 20-25 years did not recognize me.  They said "hello" like you do to a stranger, and then they each did a double-take.  Everybody else was really nice and the visit went very well.

    I went to the grocery store, still worried that people might stare at me.  Not only did no one stare, they totally ignored me.  In fact, they ignored me so completely that one woman cut in front of me in the line at the check-out counter.  When I made some throat-clearing sounds and said, "Oh, so you aren't with the woman ahead of you?", she said no; and she pointed out that there was an open check-out lane at the other end of the row, if I wanted to go down there.  WTH?  Maybe I should have walked up really close to her and said something about having mange.  The other check-out clerk was very nice, and she looked me right straight in the eyes.  (Oh, maybe she was staring at my head.)

    Anyway, I think I can get used to this scarf thing.

    otter

  • beergirl
    beergirl Member Posts: 83
    edited May 2008

    Hi All! I feel normal - well, almost - now.

    Karebear,Danismom, MsKaren, Craftygal, Cmbe, Rosario,Lilwebb,Lenny, Lano, Jas, Cicady, NurseLisa, Grandmadeb, Kathy's_hubby, Ladybugcyndi - Hope your tx's went well this week and you have no SE's. Hope I didn't miss anyone.

    Otter, I like your chart. Thanks.

  • Kfalls
    Kfalls Member Posts: 67
    edited May 2008

    debap - my doctor won't let me take tamoxifen because I have had a blood clot previously. I have to have my ovaries removed and take something else (?) A wife of a friend of my husband is involved in a lawsuit against tamoxifen because she had a stroke caused by a blood clot. I do not say this to scare you because millions of people take it with no problem I am sure.



    I would just do my homework and ask lots of questions. There are blood tests, Factor Five Leiden, being one of the main ones, that can determine if you are at genetic risk for blood clots. They did a whole panel on me. Ask for these tests before they put you on Tamoxifen as a precaution or ask about taking a daily aspirin while on the drug.



    Karen

  • ladybugcyndi
    ladybugcyndi Member Posts: 35
    edited May 2008

    Sharon... definately we have got to have our lunch date soon.  It is so nice to be finished with the chemo part. I am looking to wait until the last week or so of June to actually start radiation.  I figure give my body time to recover from chemo before I go turning it all glow in the the dark like! 

    Otter... I had the same thing with taste buds on #3.  Not that you want to hear this, but they didn't come back until the day before #4. It sucks, but then after #4, they are here (day 3 out) and I feel good. 

    Debap... I had itchy, watery eyes after #2, lasted until about 3 days before #3, then they came back a day or 2 later and are still here.  No break between 3 and 4 for the eyes.  Although, I realized lastnight that they hadn't been as bad all day.  Then, boom, they started itching.  Go figure! 

    Kathy123.. same as everyone else is telling you about the hair.  Mine started to look "lifeless" on about day 12.  The back of my head was very tender and sore.  I started noticing strands falling out as I rubbed my head the next day, and realized this was it.  It started on a Tuesday, so for the next 4 days I kept my hair in a ponytail.  I knew once I took it down, I was committed to letting it go.  I opted to wait until Saturday of the same week to do anything.  I went out Friday night and bought a new pair of clippers.  My son had taken his back to Germany with him, guess he did really need them more than me!  I got up Saturday morning, took the ponytail down and laughed.  Took a long, hot/warm shower, scrubbed my head and watched as a good bit more came out in the shower of course.  Condidtioned it, for whatever reason?  Got out, took the scissors to it, told it goodbye and then I shaved it.  It was totally hilarious to me, it felt like I had taken charge of a hopeless situation.  It was something I could control, finally.  I have not looked back.  Now that I am finished, I waiting for the "new crop" to come in.  We'll just have to wait and see how it comes back now!  Good luck and don't let it bother you, or it will drive you nuts!

    From what I'm hearing, most have felt good after #4, maybe its the relief of knowing we don't have to do it again? Maybe its just the release of tension from our bodies?  Not that I care which it is, just that I feel better than after #3.  For some reason, it took me much longer to bounce back (not that there was much bouncing mind you) from it.  Taste buds died off, energy was zilch, general attitude was kinda pissy and cranky.  Work loved that :)  Hope everyone has a good weekend, sleep lots, get out and enjoy the weather..whatever .. just have a good weekend ladies! (and kathys husband)  Have we heard from him lately?

  • MsKarin
    MsKarin Member Posts: 105
    edited May 2008

    Hi All,

    Sorry I have been avoiding the posts. It seems since this whole BC thing started I have turned into a hypochondriac. I am afraid if I read too much on here it won't be a real SE but one I created in my mind because I read one of you had it.

    Wednesday 1st treatment wasn't as bad as I had imagined it to be. Doing ok so far but freaking out because husband has a chest cold and I'm afraid of his germs all around me.

    Karin

  • robink
    robink Member Posts: 60
    edited May 2008

    MsKarin - no need to apologize.  You've got to deal with all this in a way that work for you and if not reading and posting helps you get through then more power to you!  I'm glad your first dip in the chemo pool wasn't nearly as bad as what you had anticipated.  I think that is true for most of us.  Listen to your bady these next few days and if it says "I'm tired" then rest.  Make your dh sleep in the spare room if he's coughing a lot and make sure he's washing his hands often.  Hopefully he'll be on the mend by the time your counts drop.

  • VBG
    VBG Member Posts: 75
    edited May 2008

    Hi All,

    I am scheduled to start on June 11.  I have been feeling so overwhelmed because through all of my other "treatments" I never expected to do chemo.  I had survived all this to date knowing that I was almost through!  Now I am looking at a summer of questionable health and a year of waiting to have my hair back to "normal".  It is hard to admit that the hair loss is such a huge deal but it is the idea of looking"sick" and as many of you have discussed having other people looking at you that bothers me most. 

    I am fearful of the SEs and being debilitated for most of the summer.  I am hoping that for once I am on the "lucky" side and have minimal SEs!

    Debap...I experienced other SEs from Tamox so be sure to check out the site Otter posted.  I had my ovaries removed and will now start AIs once I am done with chemo!

    Thanks to all of you for your posts, I now have a better idea of what is ahead and also what questions to ask when I meet with the chemo nurse next week.

    Valerie

  • catlover44
    catlover44 Member Posts: 78
    edited May 2008

    Hello all~

    I'm boarding the TC train this Wed. 6/4, and even though I got a last-minute reprieve from having to do TAC, I'm still wanting it to be over with already!  I'm just feeling better from my mastectomy earlier this month, the pneumothorax caused when the port-a-cath was installed, etc.--it sucks that now I'm going to get knocked back again.  But I'm having 'clean-up' chemo, so they tell me--not trying to shrink anything, just wiping things down after the surgery.  So chin up!!

    I'm wondering--we're going to try to spend a week at the beach (under an umbrella with high SPF, of course!) during the 3rd week after my 2nd treatment.  Do you guys think that's feasible?  It sounds like most of you have had the worst s/e's during the first week after tx, then it gets better from there.  I just don't want to get 8 hours away from home and wind up with some funky s/e and freak out my poor husband (nor do I want to wind up in a small-town ER that's used to dealing mostly with jellyfish stings.....)  I got my previously long hair cut in a very cute bob today--too bad I won't get to enjoy it for long!  Oh well, just a minor detail.

  • otter
    otter Member Posts: 757
    edited May 2008

    VBG and catlover, welcome!  This is a great place to be, if you have to be somewhere.

    Boo307, about those caustic bm's...  I've developed diarrhea during each of my 3 rounds of TC.  It lasts for maybe 3 or 4 days, but I actually became "scalded" during round #1.  I treated it with Desitin ointment.  My onco suggested using baby wipes, and that has worked wonderfully--no more problems since I adopted the baby-wipe routine.

    catlover, yes, week 3 has always been my best week.  During round #1, I felt better than normal that week.  During round #2 I felt good during wk 3, but I had some itchy head bumps that I didn't want to expose to the sun (or to the viewing public).  Week 3 of this round (#3), I apparently developed a mild sinus infection that sent my temperature up past the "call your oncologist" threshold.  So, I've been on antibiotics and other meds and staying close to home.  Much as I hate chemo, I do not want to delay my last tx, which is next Wednesday.  Unless you go and contract something infectious (be sure to take a thermometer and check your temp), you should be fine.  Be really, really careful about sunburn--it does not mix well with Taxotere.

    Everybody have a nice rest-of-the-weekend!

    otter 

  • Senora
    Senora Member Posts: 13
    edited May 2008

    Hi all!  I had my 4th tx on Thursday and it has really knocked me.  I have been so tired and it seems like all I can do is sleep.  The first three tx did not hit me like this at all.  I also found out that I will have to have 6 dose dense treatments.  My oncologist had originally said 4, but then said 6 due to the fact that I have triple negative breast cancer.  He seems to think that the 6 will do me more good than the 4 and I guess I agree, but I was secretly hoping that he would stop at 4!  I always get the neulasta shot the day after my chemo, but this time not only did I get the neulasta shot, but also aranesp. My red counts have been dropping with each chemo and my hemoglobin was down to 10.4 so they thought I should get this as well.  Has anyone else gotten this shot and if so, what kind of side effects did you experience? When I read the side effects on the drug information sheet I almost said no thank you, but I really don't want to end up having a blood transfusion either.  If anyone can let me know any info I would greatly appreciate it.  I hope that everyone is feeling well.  Please take care.

    Senora

  • debap
    debap Member Posts: 51
    edited June 2008

    catlover44:  I felt really good during my 3rd week after each of my 4 treatments, as I think is the same for most of us.  You should go and have fun, summer is too short to waste any!

    VBG:  Chemo sucks to be quite frank, but it is doable and is over before you know it.  It sounds like you have been at this a while.  I'm so sorry you need chemo too.  What other SE's did you have from the tamoxifen?  I am having my ovaries removed also, but my gynecologist wants to wait until mid-summer when I have recuperated from the chemo and reconstructive surgery.  My onco wants me on tamoxifen until then. 

    Debbie

  • VBG
    VBG Member Posts: 75
    edited June 2008

    Hi Depap,

    I had ovarian cysts and a large endometrial build up, no period after being on tamox for 1 yr.  I had an uterine biopsy...just to be safe and came back clean.  Cysts came out when I had my oopherectomy.  Tamox did not work for me as I had a recurrence of BC near my initial tumor 18 months after the initial dx.  I stopped the tamox and periods started again so all the SEs are now a thing of the past. 

    I just has my bilat/recon (late April) and am getting fills which will continue thru chemo.  My exchange surgery will now be delayed until after chemo is complete.....most likely Oct! 

    Just wish I could catch a "break" in all of this stuff....seems like I always draw the short straw!

    Valerie

  • Rosario
    Rosario Member Posts: 14
    edited June 2008

    I had my 2nd tx on Thursday.  So far everything is going well.  Less anxious this time around.  Do notice that I get tired more frequent and my energy level drops.

    Hair loss...  It started on Monday before memorial day weekend by Sat it was pretty much gone after I washed it.  Have not shave it all.  I am wearing mainly scarfs and I like them alot.  The little hair left gives the appearance that I have hair underneath.  I did order 2 wigs...Just have to find the one that suits you.  Try them on first.  My first one came from a catalogue and it was too dark.  I got a new one, short and not my hair style at all, it makes me look modern...what the heck...I am in great spirits ready to embrace this.  I was so afraid of the hair loss...now that is here, I am just alternating between hats, long wig, shirt wig and scarf...don't want to get stuck w/ only one thing now that summer is comming.  I feel scarves are less intimidating for others that know what I am going through.  I know it screams cancer but heck...that is what I am right now in my life.  I have had to update my ward robe to make it go w/ my scarves.  I feel I look like a gipsy...And I am playing up the part!

    It gets easier a few days after the hair falls off.  The anxiety of waiting for it to fall off is worse.

    Tamoxifen & Blood clots...I have Lupus and the blood cluta are true w/ tamoxifen.  I already have an anticouagulant factor and therefore the may send me into early menopause and cheange my hormome therapy...there are blood tests that can be perform to see if you already have predisposition to clots.  I came back positive for it.  My onco did not pay much attention to it until my Lupus dr. ran the testing.

    Have a great Sunday!

  • MsKarin
    MsKarin Member Posts: 105
    edited June 2008

    Sore toes?

    Ok today is fourth morning out from 1st treatment. Overall feeling pretty good, a bit achy and sore but don't need meds for it yet.

    I remember reading something about sore feet; think otter was one that mentioned it. I don't have sore feet but have developed what appears to look like the beginning of a big blister on bottom of both big toes. Anyone else have this problem? What did you do for it?

    Thanks, Karin

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