Has anyone started a forum for Chemo in Dec 2008?

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  • ptjen
    ptjen Member Posts: 52
    edited January 2009

    Simvog: My 3rd Tx (TC X4) is scheduled for Jan 21st.

    For all you TC X6 women, would you e willing to explain why your onc is having you do 6 instead of 4? Not that I want more chemo, but I chose this one instead of the more rigorous dose-dense AC/T so if 6 are better than 4 of TC, I would like to know if doing so gives me any additional benefit My onco says there aren't any studies on it and she stays with the studies. I love her and she has proven her judgement to me several times, but on this one, I want more info. Thanks for any input!

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited January 2009

    Lisa, WOW what a year! For some reason I thought your daughter was born that way. Any chance her hair might ever grow back?

    ptjen - due to my oncotype dx being 57, my onc wanted to make sure that I would get rid of everything. Couldn't tell you why or where to get the info, but he felt it would be a little more aggressive to do 6. Before I got my oncotype back, he was looking at only 4 tx of TC. You might want to have a talk with hime about it.

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  • apfuentes
    apfuentes Member Posts: 95
    edited January 2009

    Joined the bald and the beautiful today. I finally got sick of my hair falling out everywhere and this morning it looked like a bird's nest, so the DH buzzed it.  I am doing surprisingly well about it.  Like everyone has said, I was relieved to have it gone after all the shedding.  I feel somewhat liberated.  Bring it on cancer!  I'm ready to kick your butt! 

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    My onc said that if there is node involvement 4 tx wouldn't be enough. I've read in the threads here somewhere too, that 6 tx would be given if there was any node involvement.  I don't remember which thread it was on tho.  I did have a 2mm micro met in one node so my onc said better safe than sorry.  2mm is the cut off size of when you should worry about it.  I don't know about any studies to support that tho.  He also recommended a full axillary dissection but since it wouldn't improve my odds at all.  I opted out of that.   Onc said that sometimes they have to just recommend the standard of care even tho it's over kill because there aren't any or enough studies to support otherwise.   Any way, I'm doing 6 TX.

    Apfuentes, I'm glad you're relieved to get rid of the bird nest.  It is quite liberating ... until the first time you go out of the house.  After that hurdle, it's all good. 

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  • lktracey
    lktracey Member Posts: 110
    edited January 2009

    Firni, I am hoping the rest will part me quietly like a thief in the night, hee hee. I combed out a trashcan full this morning before Michaela woke up. She is 9.  So about not being "embarrased" in public with us.  I don't remember being that way till about 12 or so...

    Lisa, You and your family deserve a good 2009 after all the cancer and hairloss!  I will keep you all in my prayers. 

    Speaking of, my latest pet peeve is when people say "you are sooo lucky" to be doing so well... NO, it's not luck, it's prayers, blessings and positive thoughts.  I don't believe it's luck,or LUCK would have let me keep my breasts, my hair, my sanity and hit the Powerball! God has guided us through all this, not Luck.. Okay, off the soap box now!

    You can tell the hairloss thing is getting to me, I'm getting more pissy by the moment!

    Simvog - you have your pity party - we all get to have one now and again- we deserve it!  It is okay, because your sisters in Survivorhood are here for you!!

    Hope everyone had a great day.  Went to see Bedtime Stories with my daughter.  It was worth the trip out and very funny!

    Lauren

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  • jajebr3
    jajebr3 Member Posts: 15
    edited January 2009

    Well ladies thank you for all your kind words.  I have just taken an ativan to calm my nerves,14 hours and counting till I find out if my body is "ok" to begin my first tx and if the onc gives the ok 30 minutes later its off to the races.  AHHHHHHHH, I feel like I am going crazy, I so want all this over with but can't seem to get started, been put off twice now, 26th then the 30th and now possibly tomarrow, "more than likely but up to my onc." say my surgeon.  Wish this not knowing would just stop.   Enough of my silliness.

    Lauren your "you are so lucky" comment really lightened my evening.  Thank you.

    Hope everyone has a wonderful 2009 thru God all is possible.  But I am really scared.

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    Hi Alyssa,  We all know that the waiting is the worst part.  Most of us are past that for now and I'm so sorry you're still in limbo.  I'm praying tonight that tomorrow you can get started and join the rest of us on this crazy ride.  What time is your appt. tomorrow?  I hope it's early so you know.  I hope your Ativan works and you can get some good rest tonight.

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Jajebr3: Remember that they are guiding you through this so that you will be safe. It is better to be prudent. The ultimate goal is to survive. To put this behind us. But we still need to walk through it. Have faith that you will be ok. My thoughts are with you.

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  • teachgrade3
    teachgrade3 Member Posts: 6
    edited January 2009

    I have been online reading all your postings for several weeks now. You are all inspirations and your personal experiences are so helpful. I got my first treatment of TC on Dec. 19. (2nd is Jan.9)It went pretty well. Mostly felt real tired and in a chemo fog. The Neulasta shot gave me some sharp pains in my ankles after a few days and then on Christmas Eve I had horrible lower back pain almost bringing me to tears. It's been about 13 days and I still have hair. I am feeling some pain in my scalp. I've heard that's a sign. I teach school and have been out for Christmas vacation since I started my treatments. I'm hoping the hair comes out before I go back on January 5. I went to a wig/hat/scarf shop and tried on all kinds of headwear. The woman who owns the shop liked the way I looked in almost everything and asked me to model them for her website! She said I'll get some products in exchange for my time. I got some scarves and caps so I'm ready for the big reveal.

    Thanks again for letting me listen in on your postings. You've been a big help in my experience.

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  • jajebr3
    jajebr3 Member Posts: 15
    edited January 2009
    My Appt is at 8:45am and chemo is scheduled  at 9:15 If all goes well.  I have my little chemo bag ready and they expect the first time to be 4 hours they say the first time with avasitn they want to run it slow and watch how my body reacts.  Thanks for asking and I am very greatful that it is early or I may have went crazy.  Did anyone else clean and orginize and clean some more, like nesting before I had my children the last few days before they were to start chemo, Wish my sister had got me a maid service, you were so lucky to receive that, but be assured that my birthday is at the end of January and I will be putting the bug in her earWink
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  • mimiwhite
    mimiwhite Member Posts: 60
    edited January 2009

    Hi everyone

    Simvog, I hope you are feeling better today.  My 2nd Rx was very emotional for me.  I am sad and just scared at times.  I have anxiety over radiation, and whatever future testing I might need. 

    I am off to work today.  Have a great day girls.

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  • Brenny
    Brenny Member Posts: 116
    edited January 2009

    simvog - hope your spirits are up a bit today. 

    apfuentes/lktracey - hang in there!  I got my bangs and hair halo (chemosavvy) this week and played with them yesterday.  The bangs are wide and  just hook onto a wig liner or cap and they will give the appearance of hair -- I wore them yesterday with a knitted cap and the look was okay.  They will be good when the weather gets warmer and the ball caps come out.  The halo looks like wig hair (med length - sort of a page boy) but has no cap -- again cooler for warmer weather.  Very pleased with them both -- will be good weekend options.  I will wear my wig to work everyday so will probably be ready for a break by the weekend.

    Going to see some old friends this eve - good friends that get together once a year -- will need to gently break the news to them -- wanted to do it in person rather than otherwise.....

    Bren

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited January 2009

    Anyone else has a dry scalp? My entire head is soo dry, itches and red spots (bumps) all over. My head is only red because I scratch all day long, the past 2-3 days have been bad. Anyone has a good lotion to recommend? It's driving me crazy but nothing seems to be working :(

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  • Lainey64
    Lainey64 Member Posts: 740
    edited January 2009

    Caroline - Ouch, sorry about your itchy scalp.  I haven't had that problem yet.  I've been using Vaseline Intensive Care lotion non-scented hypo allergenic every day so maybe that has been helping.

    I have another problem - I have an itchy patch on my butt cheek.  It started as an itch and then it got a scab which  I accidentally scratched off.  Now it's surrounded by tiny red bumps and itches like heck. Of course it's in a place that is very difficult for me to see so my boyfriend has been helping me.  Talk about losing all dignity!  It's small and I've put neosporin on it and some Cortaid but it's still itching.  I am going for TX 3 this morning (yuck!) and plan to mention it to my Onc.  I've read other threads that said they've used Benedryl cream.  Has anyone else gotten any little rashes like these?  I really don't want to bare my bottom to the Onc!

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  • ptjen
    ptjen Member Posts: 52
    edited January 2009

    Cebula: I went through a really itchy couple of days and then I rubbed hydrocortisone cream into my scalp really well, put Gold Bond powder in my hat and it worked like a charm. I've also (at the recommendation of my wig lady) been washing my head with dandruff shampoo. She recommended the Neutragena brand but I haven't had a chance to pick it up so I've been using my husband's Head and Shoulders (shampoo and conditioner combination) and it works fine. Hope this helps!

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    Caroline, I've been using lavender baby shampoo and Dove cream rinse on my head since my head was shaved.  I've not had any dryness. I put the cream rinse in at the start of my shower and rinse it off at the end of my shower so it has some time to soak into my head.   My scalp is red tho.  Maybe coz it isn't used to just having fuzz.  My welcome to chemo book suggested the baby shampoo.  It also suggests using a good face cream on your head.  Otherwise, my onc suggested Eurcerin original cream in the jar.  It's really thick but not greasy and softens and heals really fast.  I only have to use it like every three days to keep my skin moist ( which is amazing in the CO dry climate).  The original cream in the jar doesn't have any alcohol or chemicals in it which makes it good for chemo skin.

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    Lainey I had some red raised itchy patched from adhesive when my port was put in.  Chemo made it really bad.  Benadryl original pills and cream worked great.

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited January 2009

    Thanks Divas, I knew this was the place to ask :) Right now, I'm using baby shampoo with lavender, and try Dove facial lotion and avon facial lotion (from the LGFB bag). Wrote down all your suggestion and I'll go down the list.

    Lainey, wish I could help, hope you get rid of the rash soon.

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    Oh what a night:

    I was sooo sick with cramps and diarrhea. I thought that I would pass out a few times. That was the worst. I am so grateful to be somewhat on the other side of that episode. I really felt like I was going to die.

    I did everything right too.Recommended water. Stool Softeners. Flax Seed Fruit Veggies. I pray that that never happens again.

    I will try to walk today. (even though I am dead tied.)

    5 days past tx1 yikkes whats next.

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    Bold If you're having a lot of diarrhea I'd cut out the stool softeners and cut back on the fruit and veggies.  Maybe eat a little cheese.  I wait until I know if I'll need softeners or Immodium or maybe even nothing before I take anything.  Nothing worse than pushing things to one extreme or another.  Don't push yourself with the the walking either.  Your body needs time to recover.  I'm sure that's why we're so tired.  Days 4 and 5 have been my worst days so I'll bet you're on the upside soon.  I pretty much slept all day yesterday (day 3) and I think I'll do the same today.  It feels so good.  On Sunday, I'll get the dog out for a nice walk.  DH will have to do it today and tomorrow. :)

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  • Bold
    Bold Member Posts: 692
    edited January 2009

    thnx:

    Maybe a weee little napppppppzzzzzzzzzzzzzzz

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  • Catrenae
    Catrenae Member Posts: 733
    edited January 2009

    Hi Ladies,

     I haven't been "on" in a while. With the Holidays and being off work I haven't had too much internet access. I've been trying to catch up on all the posts... 

    Had my 2nd TX on Christmas Eve. The worst part was the nurse couldn't get blood return through my port, so they tried several different things and 2 hours later they were finally able to start the chemo.  

    I felt pretty good, just the "usual tired" feeling, until Sunday & Monday. Then I felt like I had the flu and my stomach was a mess. I'm better now...

    I have a question and if it's been answered already, I apolgize. I saw the discussion on remedies for itchy scalps, but what about the burning/painful scalp. At times my scalp is very, very painful to the touch which makes it hard to wear head coverings...... (I had buzzed my head when my hair first started coming out and almost all of that is gone except for a little"bit of stubble..." )

    Any suggestions?

    Thanks,

    Cat

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  • BonnieK
    BonnieK Member Posts: 655
    edited January 2009

    Hi Catrenae,

     I don't know the answer to your question about the burning/painful scalp, but I have the same problem.  My scalp hurts on the crown and sides of my head and it does make it very uncomfortable to wear head covers.  My hair started coming out early this week and my husband buzzed it on Dec. 31st.  I was hoping that would take away the discomfort, but it didn't -- now I have a really funny looking head that hurts.  Second Tx for me is Jan. 7th.  -bonnie 

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  • Firni
    Firni Member Posts: 1,519
    edited January 2009

    My head gets the same way.  I try to have nothing on my head when I'm at home with just family.  That seems to help the most.  DH is wanting to shave my head clean.  He said that's why it still hurts.  But I'm scared to do that because I've seen on other threads that the razor stubble and all is even worse.  Sometimes I just sit and smooth my stubble in the direction that it grows.  That feels good.  Of course, these things won't help if you're out in public somewhere.  Unless you're a lot braver than I am.  I'm hoping someone has found a better solution.

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  • msbusdriver
    msbusdriver Member Posts: 72
    edited January 2009

    I have been away from the board for a while.....I sure have missed you all!  Sounds like a lot has gone on.  It took me a while to catch up.

    I have been doing good with tx 2.  Not much to report.  My head has the little bumps and soreness too.  It is so aggravating!!  I put Noxema all over it before my shower today and that felt so good and cool.  I am about ready to wax what little hair stubble I have left right off.  I have some of those cool wax strips......maybe if I don't stick them to my skin?  Hmmm......

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  • Catrenae
    Catrenae Member Posts: 733
    edited January 2009

    Bkokie and Firni,

     Thanks for your input. I didn't want to shave my head completely because of the same reason. I've heard that the potential for ingrown hairs and infection is bad.... 

    With as little hair as I actually have left I thought my scalp would stop hurting by now, but no such luck. I've been fortunate that I haven't experienced some of the worse side effects from chemo so I guess I shouldn't complain! Smile

     Hope everyone has a great weekend.

    Cat

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  • lisasayers
    lisasayers Member Posts: 850
    edited January 2009

    Hello Everybody

    Today is one week from TX2.  Last night I couldn't sleep because of the achiness I was feeling, but part of that problem is I haven't taught Zumba since last Saturday.  But I'm heading out now.  I noticed the more active I stay, the less pain I feel.  Plus I didn't have my detox soak to use this time...which made a huge difference! 

    As far as my head, I'm just using my skin care products on my head as well and that has helped.  I was surprised that somebody suggested using head and shoulders...it is one of the harshest shampoos on the market.  I agree that baby shampoo would be good...as long as you check the ingredients.  There are so MANY chemicals in the products on the market...so read you labels!

    Remember, your skin is your largest organ...so anything you put on it, gets into your bloodstream! 

    Hang in there ladies.......

    Hugs

    Lisa

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  • colleen1960
    colleen1960 Member Posts: 226
    edited January 2009

    Had my 4th tx today.  The only problem was the nurse had to stick me twice to get a good vein.  She first tried my hand and it hurt like he..., but then she was able to get it from my arm.  Feeling a little fuzzy but I never get to bad until day 3 & 4.  Question the nurse just called and said that I needed to come back in on Monday for more blood tests.  I asked if everything was ok and she said yes, but my blood coagulated and it needs to be redone.  This makes me crazy as I do not have the greatest of veins and it hurts.  Has this happened to anyone??

    I am sorry to see that so many are having a tough time with some of the SE.  Yesterday when I was by myself I totally broke down.  I was just beginning to feel good again and knowing that I had to go back again just made me crazy.  I am almost sick of people telling me how good I look.  I know they mean well but it is annoying sometimes.  Sometimes I want to yell back maybe I look good but I am just trying to put up a good front, especially for the kids.  Since I am not losing my hair totally which I am definitely grateful for, but I heard someone say when she thought I could not hear "Well she didn't even lose her hair so she must be ok".  That is not something you really want to hear.  Well I guess I should stop complaining and be thankful for all the good people who really do care.  Thanks for listening!!

    Have a nice weekend, SE Free

    Colleen

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  • Lainey64
    Lainey64 Member Posts: 740
    edited January 2009

    Colleen,  I know how you are feeling.  I think we have all probably felt that way.  You can complain to us all you want!!

    Hi Sherry & Cat.  I'm glad you're both doing good.  Cat, I get that flu like feeling a few days after every TX so far.  It passes thankfully.

    Today was my TX #3.  My Onc said I am doing fine.  My WBC was at 7000 which he said was very good.  However he said I'm slight anemic.  He didn't seem too concerned about it but I am going to try and eat a little healthier than I have been.  My next TX is on January 16th and then I'll be halfway thru. 

    For my head, I'm using Dove body soap.  I got the unscented extra gentle kind and it seems to work fine.  I have stubbles all over the place that the pet hair roller didn't pick up!  My head looks so funny.  But the crown/top of my head is more sensitive and I think it's just because of the stubbles press into it when I wear a cap. 

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  • havehope
    havehope Member Posts: 503
    edited January 2009

    Texas357                24/25 -Nov        3xFEC+9xTaxotere

    mimiwhite                1-Dec         4xTC

    gts                          1- Dec 

    meb                        1-Dec         4xAC+4XTaxol 

    Colleen1960             2-Dec        CMF

    mmliv                      2-Dec        4xTC

    msbusdriver             2-Dec        4xTC

    LindaBusEd             2-Dec        6xTAC 

    vtmama                   2- Dec       4xTaxol+C 

    shan1171                2-Dec        6xTAC 

    cindyrellacleans      2-Dec        4xTC 

    Brenny                    3-Dec        4xTC

    zuffa                        3-Dec        6xTAC

    Lindy58                    #2 -3-Dec      4xTC  

    Catrenae                  4-Dec        4xAC+12xTaxol

    Lainey64                  4-Dec        4xAC+4xTaxol

    CindaD                     4-Dec        4xTC

    BreastCancerDiva      4-Dec        4xFEC+4xTaxotere

    lisasayers                 5-Dec        4xTC

    simvog                      5-Dec        4xFAC+4xTaxol

    cebula                      8 Dec        6xTC

    sdavis                      9-Dec        6xTC

    berrypatch               9-Dec        6xTC 

    ptjen                       9- Dec           4xTC     

    ShondaE           #2  9-Dec              AC 

    Meg511                   10-Dec            6xTCH

    Firni                         10-Dec           6xTC 

    Lindy58                     10-Dec       1xTC+3xAC 

    Colleen1960             #2 12-Dec        CMF  

    ddlatt                       15-Dec            4xTC                              

    horsercn                   16-Dec          4xAC+12 Taxol+Herceptin 

    apfuentes                 16 Dec             4xTC 

    iktracey                    16-Dec                 4xTC 

    chiquita                   16-Dec                  FEC 

    Texas357                #2 16/17-Dec        3xFEC+9xTaxotere 

    Kranie                      17- Dec                6xTC 

    Bkokie                     17- Dec                  4xTC  

    LisainVA                 #2-17 Dec              4xTCH 

    rayhope                    18-Dec                6xTCH   

    Lainey64                  #2 18-Dec          4xAC+4xTaxol 

    momof4stars             18-Dec?           FEC+Taxotere

    mattscot                  19- Dec             4xTCH 

    busqueen                 19- Dec           4xAC+12xTaxol 

    mary5454                 19-Dec            4xTC 

    teachgrade3             19 Dec              TC 

    mombos                  19 Dec              6xTC

    ENFENETEE            22-Dec             4xTC 

    Grancy11                  22-Dec              6xTC

    mimiwhite              #2- 22 Dec            4xTC

    colleen1960            #3 22-Dec             CMF 

    LindaBusEd           #2 23-Dec              6xTAC  

    zuffa                       #2-23-Dec        6xTAC

    mmliv                     #2 23-Dec              4xTC 

    msbusdriver           #2 23-Dec               4xTC 

    cindyrellacleans      #2- 23Dec               4xTC  

    Brenny                 #2 - 24-Dec               4xTC 

    lisasayers             #2 26-Dec                 4xTC

    cebula                   #2 - 29 Dec               6xTC 

    CindaD                  #2 - 29 Dec               4xTC

    Bold                        29- Dec                  6xTCH

    DrDecker                 29 Dec                   4xTC

    sdavis                    #2-29-Dec               6xTC

    simvog                  #2 -30 Dec          4xFAC+4xTaxol   

    Firni                       #2 -30-Dec              6xTC 

    berrypatch              #2 30-Dec               6xTC  

    ptjen                      #2-31-Dec               4xTC

    Lindy58                  #3 -31-Dec               4xTC   

    colleen1960            #4 - 2 Jan 09             CMF  

    jajebr3                     2 Jan 09                   4xAC+4xTaxol

    Lainey64                 #3 2 Jan 09          4xAC+4xTaxol  

    Texas357                #3 6/7 Jan 09        3xFEC+9xTaxotere 

    iktracey                  #2 6-Jan 09               4xTC 

    apfuentes                #2 6-Jan 09              4xTC  

    Kranie                     #2 7-Jan 09              6xTC  

    Bkokie                    #2 7-Jan 09              4xTC  

    mary5454                #2 -  8-Jan 09           4xTC

    teachgrade3            #2 9 Jan               TC  

    mombos                  #2 9- Jan 09             6xTC 

    Colleen1960             #5 12-Jan 09           CMF

    mmliv                      #3 13 -Jan 09        4xTC 

    busqueen                #2-9 Jan 09           4xAC+12xTaxol 

    mimiwhite              #3-12 Jan 09            4xTC 

    horsercn                 #2 12-Jan 09          4xAC+12 Taxol+Herceptin 

    LindaBusEd            #3- 13-Jan 09            6xTAC 

    zuffa                       #3- 13-Jan0 9            6xTAC

    lisasayers               #3-16-Jan 09                 4xTC 

    simvog                    #3  19- Jan 09           4xFAC+4xTaxol

    cebula                   #3    19 Jan 09               6xTC 

    Bold                        #2   19- Jan 09             6xTCH

    Firni                       #3   21-Jan 09              6xTC

    ptjen                      #3   21 Jan 09               4xTC

    Colleen1960           #6 22-Jan 09        CMF  

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