Has anyone started a forum for Chemo in Dec 2008?

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  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    http://www.tlcdirect.org/articles.aspx?art=127

    http://www.tznius.com/cgi-bin/tying.pl

    There's more, if you type in head scarf tie you'll find plenty of website. It's pretty easy. Good luck. I did find cheap scarf at K-Mart. I'll be ordering the rest online. tlc direct offers overnight shipping, it's $20 but you would receive it by Christmas.

  • msbusdriver
    msbusdriver Member Posts: 72
    edited December 2008

    Hello Divas,  I haven't been on in a couple of days and my, my, there are a lot of posts to catch up on!  Sounds like everyone has been busy.  I went to a Christmas party last night and wore my short sassy wig with a Christmassy bandana tied around it.  Everyone loved the new look.  I ended up taking off the wig and wearing just the bandana later tho.  This morning I wore my longer wig to church and some people couldn't tell it from my hair, of course they were old with bad eyesight! Lol  Some of the people who where at the party and then at church said they didn't know which they liked better.  I told them you never know what I'll end up wearing. 

    Bonnie, my eyebrows have been itching.  I thought it was a strange SE, too.  I guess maybe a few are coming out.  I really don't want to lose them. The hair is gone all but a little fuzz, but not the eyebrows too!  Please.

    Mimi, good luck with #2 this week.  I'll be getting #2 also.

    Firni, I hope your docs can get your insurance to pay.  They usually know how to word stuff so that they get the best payment they can.

    Cebula and Robyn, welcome to the bald/buzzed ladies club!  It really isn't that bad for me either.  It kind of feels good.  My only objecter is my 13 yr old.  I have to remember to cover the gourd up when he is around 'cause it freaks him out.  I think it is just a reminder to him that I am being treated for cancer and that is what bothers him.

    Linda, I am so glad you had a nice Christmas with your kids.  I am scheduled for #2 the same day as you.  Good luck.

    Brenny, I think you have the right idea about the hair.  Mine seemed to come out in the shower more than any other time.  So...you may have the right idea.

    Lisa and Cebula, you both look great with your buzzes!

  • Lainey64
    Lainey64 Member Posts: 740
    edited December 2008

    I'm not brave enough to take pic of myself bald yet. This morning my boyfriend and I went to breakfast at our favorite place. It took me forever to get the wig on the right way so that I felt comfortable with it and shortly after after we got to the restaurant my head started killing me.  The wigshop lady must have tightened it too much because I felt like I had a vice around my head.  Add to that, there was a table full of noisy people next to us and I thought I was going to lose it.  As soon as we got back in the car I pulled the wig off and slipped my cap on my head.  I was in tears all the way home.  My boyfriend checked the wig when we got home and loosened the strap up a bit.  It's the cheaper of the two that I have so I hope my good one will work ok for work tomorrow.  I put my little cap back on and went to Target with just that on and I was more comfortable that way.  I think today really hit me that this journey is going to be a long one for me.  I hope I can do better than I did today. 

    Many blessings to those getting their next TXs this week. *hugs*

  • BonnieK
    BonnieK Member Posts: 655
    edited December 2008

    Today has been my worst day since Tx last Wednesday -- I have a terrible headache and body aches.  My temp is up slightly at just under 100, but "normal" for me is about 97, so maybe that's why I feel so awful.  Tylenol is helping a bit, but it's not a great day.  We are completely snowed in today, so it was a good excuse to take a nap.  Hope everyone else is feeling reasonably well today.  -bonnie

  • lisasayers
    lisasayers Member Posts: 850
    edited December 2008

    I just placed a big order here today for my daughter and I.  The woman was VERY nice and is shipping everything out tomorrow!

    http://www.cjhats.com/

  • colleen1960
    colleen1960 Member Posts: 226
    edited December 2008

    I go for tx #3 tomorrow.  I feel so good right now that I am not really looking forward to going, knowing that I will be so tired for the next couple of days.  But I know at least I can say after tomorrow 3 tx down 5 more to go!!!!  Right now my hair is starting to definitely fall out, but not at the rate of everyone else.  I definitely notice more in the brush and I am trying not to wash and blow dry so much.  My hair is really thin so I am hoping that it will not be that noticeable.  So on the hair subject I am still ok.  To everyone who's picture is on that has buzzed their hair you all look beautiful.   And that's what we have to remember.  We are fighting this cancer with everything we have and will continue to do so until we are cancer free.  Wishing everyone a good nights rest.

    Colleen 

  • lisasayers
    lisasayers Member Posts: 850
    edited December 2008

    Cebula you look fabulous and Lainey I'm sure you do as well!!!!!!  Hang in there ladies, this will all be over before we know it!

    For those of you who have had your second or more TX....did you find the SE worse the second or third time around? 

  • colleen1960
    colleen1960 Member Posts: 226
    edited December 2008

    lisa - I found my 2nd tx made me more tired then the 1st.  It took me longer to get my energy back.  Otherwise all the other SE were about the same.  I will let you know after tomorrow tx 3 it they were the same.  I hope they are because I would like to be somewhat awake for Christmas.

    Colleen

  • BreastCancerDiva
    BreastCancerDiva Member Posts: 62
    edited December 2008
    Hi Firni.   I bought a couple scarves from this site and they have a page of instructions on how to tie them as well.   http://www.tznius.com/cgi-bin/tying.pl  
  • Firni
    Firni Member Posts: 1,519
    edited December 2008

    Thanks for the tying sites.  I'm almost already a pro.  The hair is coming out fast and furious now.  I think I might get thru tomorrow and then I'll have bald patches.  So, most likely it will come off on Tues.

    Bonnie, I usually run low temp. wise too.  The highest I got with my temp was 99.5.  I always took my temp before I took any Tylenol or anything so I wouldn't mask a fever.  Listen to your body and get as much rest as you can.  My worst day was #4.  By day 7, I was feeling pretty good.   Hang in there!

    Lainey, you look like you're really cute without hair too.  All you younger women do.  I'm not so sure about this older and ever aging head.  Anyway, I'm sorry your wig was a disaster for you.  I'm rather liking some of the different ways to tie scarves.  They don't look like chemo scarves, that's for sure.  

    I had so much restless energy today.  I spent time on the treadmill and on the bowflex.  I organized all my new headwear and made a giant pot of green chili stew.  Yum Yum. I cleaned the house, did laundry and took the dog for a big walk even tho it was just 17 degrees today.  I'm still not tired.  I'm not on steroids either. 

  • ENFENETEE
    ENFENETEE Member Posts: 13
    edited December 2008

    Thank you everyone for all your advice! I thank all of you for opening up and sharing your experiences with me. It really helps me and encourages me. All of your advise about the ports have really helped.

    Tomorrow is chemo at 9:00 am so pray for me!!!

    ENFENETEE

  • Firni
    Firni Member Posts: 1,519
    edited December 2008
    Good luck tomorrow,  ENFENETEE.  You'll do fine.  I'll keep you in my prayers for an easy time and few SEs.
  • Bold
    Bold Member Posts: 692
    edited December 2008

    Simvog:

    My onc believes that everyone needs it why wait until you are in danger of getting infections. I know that it is an expensive shot. I have not heard of any insurance company refusing it. Ask her why you are waiting till you are in great need. Has she or he had so many patients that have not needed it. I dought it. If you take claritin before hand it can thwart the SE. I have a medical background and I guess it bug me that some professionals wait till there is a dangerous situation before going into action.

    Funny thing I wore my wig tonight to the boat show in New Port beach CA. and at one point my DH told me with his eyes that it was toooo far back on my head. YIKEES. I was just taking it for a practice spin as I do not take my first Chemo till Dec. 29. I thought OH BOY this is going to be a challenge. Just keeping them on in high wind or bending over or cooking. How much more will we have to endure? We will sure be very strong when this is done. I just pray that it is indeed done. want to dance with Ned. I love that commercial .... When I grow up I want to be an old lady. Has anyone seen that?

    Tonight I will try to go to sleep and dream that I do not have Cancer. And remember to breath.

  • kranie
    kranie Member Posts: 33
    edited December 2008

    Hi Folks,

    It is 3AM and I'm still up. I had my 1st TX on Wed. They gave me Benadryl to avoid any allegeric reaction and I actually fell asleep during treatement. The first day, I was really tired, runny nose and slightly elevated temp. plus a headache.  I thought I might be tired from the Benadryl.Friday was a little better, but still had the headache. Yesterday, was okay and today was pretty good. I am having some taste issues, bathroom issues but no real nausea and NO vomiting! They do have better drugs now and I had acupuncture before TX. What is the butt cream you guys are using? I could use some. My hair guy cut my old wig to make it more stylish (it is 17 years old) but I still hate it. It doesn't look anything like my current hair. I think I wll make an appointment with "Hair Enhacements" at the cancer center where I get my chemo.

    I am still swollen from my reconstruction. My belly is really tight and nothing fits. I want to go out, but the sweat pants don't always cut it. Boy, am I complaining or what? I think I'll find an Ativan and try to get some sleep.

    I was given Neulasta, and so far so good. I guess everyone responds differently.

    Well, here's to better days and nights for all.

    Karen

  • Brenny
    Brenny Member Posts: 116
    edited December 2008

    Good luck to today's ladies in treatment.

    Thank you for the www.cjhats.com site -- the prices appear to be great and for those of us with big heads, she says she can even make the hats larger upon request.  That's great - I have a couple from tlc that have to go back -just not big enough.

    Bold- I have double sided wig tape (can you say "ouch" ) that I am hoping is going to help the slipping. But like you, not sure exactly where this thing goes - altho mine has bangs, so I suppose when the bangs hit the eyes, that's about right?!?!  It's kind of like drawing eyebrows -- how do you know where they go exactly when/if the real ones are gone??   My answer to the heat/cooking problem while wearing the wig - I'm just not going to cook (ha ha).

    also - my onc doesn't routinely give the Neulasta shot either -- I got thru tx 1 without it.  We'll see how tx 2 goes on Wednesday.

    Hair is hanging (literally) on today - day 20, but continues to fall out -- it's everywhere!  But just need to get thru today at work and then I am home until new year's - can (hopefully) figure out how to wear the wig and the hats and the bangs that I have bought.....but will definitely be bald for Christmas --thank you, Santa!  Cebula and Lisa - you look great -- I agree with Firni - younger does look better!  Sorry, but I am SO not posting my pix!!!!

    Bren

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    About the neulasta shot, my onc doesn't give it to everyone as well, depends on your blood count. Now, they won't let me take Vitamin C during tx because it goes against chemo, chemo's purpose is to kill the cells while V-C is to boost them to build your immunity. So if I can't take V-C, then why should I take the neulasta shot? Doesn't it goes against the chemo as well? I'm just very curious and plan on asking the nurse today when I meet with her.

    Tip for scarves, wear long earrings. I saw that somewhere, and it really does take the emphasis off the scarf, dresses your hear a little more and "looks" like hair. The colorful beaded earrings are perfect, while they're not something I typically wear, I just got a bunch of them in different colors.

    Bold, have you shaved your hair yet? I can't remember. The wig is a lot easier with no hair.

    Brenny, I'm sure you look just fine bald :)

  • Lainey64
    Lainey64 Member Posts: 740
    edited December 2008

    Good morning ladies.  I'm glad some of you like CJhats.  I ordered a couple of sleeping caps and I really like them.  They are simple but really comfortable.  It's nice to spread the word about a good online company and she is really nice and I received mine quick.

    Today is my day back to work with the "wig".  *drum roll please*  haha.   I am wearing the nice one I have and not the other one I test drove yesterday.  I wore it for a bit last night and it seemed ok so I'm not too worried.  I'm just more anxious about what my coworkers are going to say. I'm sure they'll all be very nice but I'm still a bit nervous. 

    The only SE's I noticed different on TX #2 is that I was a bit more tired too.  Other than that, the nausea was better (thanks to the Emend).  I haven't notice the Nuelasta shot yet but I think that takes a few days to kick in.

    Enfenette, good luck today! 

    Have a good day everyone. :)

  • havehope
    havehope Member Posts: 503
    edited December 2008

    Firni:

    My insurance covers for Neulasta 100%.  My onc is all for the comfort of the patient. She wants me to feel good during the treatments. I had very few SEs. My daughter had a cold the same period as my nadir, and I didn't get sick. (Everybody wore masks). I had the blood test on day 15, which was first day after nadir,  so I don't think the numbers will be up. I hope I don't have to prolong my treatment!

    Cebula:

    Good question about Neulasta. Let me know what the nurse says.

    PS Day 18 my hair is still here. Keeping my fingers cross!

  • havehope
    havehope Member Posts: 503
    edited December 2008

    Updated list:

    Texas357                1-Dec        FEC+Taxotere

    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        TAC 

    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 

    busqueen                 16- Dec           4xAC+4xTaxol 

    iktracey                    16-Dec                 4xTC 

    chiquita                   16-Dec                  FEC 

    Texas357                #2 16/17-Dec        FEC+Taxotere 

    Kranie                      17- Dec                6xTC 

    Bkokie                     17- Dec                  4xTC  

    LisainVA                 #2-17 Dec              4xTCH 

    Lainey64                  #2 18-Dec          4xAC+4xTaxol 

    momof4stars             18-Dec?           FEC+Taxotere

    BreastCancerDiva      #2 18-Dec        4xFEC+4xTaxotere

    rayhope                     18 Dec             6xTCH    

    ENFENETEE            22-Dec             4xTC 

    Grancy11                  22-Dec             6xTC  

    mimiwhite              #2- 22 Dec            4xTC

    colleen1960            #3 22-Dec             CMF 

    LindaBusEd           #2 23-Dec              TAC  

    mmliv                     #2 23-Dec              4xTC 

    msbusdriver           #2 23-Dec               4xTC 

    cindyrellacleans      #2- 23Dec               4xTC  

    zuffa                      #2-23-Dec                 6xTAC 

    Brenny                 #2 - 24-Dec               4xTC 

    lisasayers             #2 26-Dec                 4xTC

    simvog                  #2 -29 Dec          4xFAC+4xTaxol  

    cebula                   #2 - 29 Dec               6xTC 

    CindaD                  #2 - 29 Dec               4xTC

    Bold                        29- Dec                  6xTCH

    DrDecker                 29 Dec                   4xTC

    jajebr3                     30 Dec                   4xAC+4xTaxol

    Firni                       #2 -30-Dec              6xTC 

    berrypatch              #2 30-Dec               6xTC  

    sdavis                    #2-30-Dec               6xTC

    ptjen                      #2-31-Dec               4xTC

    Lindy58                  #3 -31-Dec               4xTC

    Texas357                #3 6/1-Jan09        FEC+Taxotere 

       

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    I should be homeschooling right now, but my son decided to start throwing up! So skipping school and shopping for scarves Wink I found those on eBay, they are just gorgeous http://cgi.ebay.com/NEW-PRETTY-HEAD-COVER-CAP-BONNET-HIJAB-ABAYA-CHEMO-HAT_W0QQitemZ270319879793QQihZ017QQcategoryZ3005QQtcZphotoQQcmdZViewItemQQ_trksidZp1742.m153.l1262

     I wish I had time to get one by Christmas. Maybe for Easter? Never thought I'd be buying Muslim wear! LOL! My neck has been cold since the hair are gone, I'm wearing a neck scarf in the house so these are neat. Her scarves are gorgeous as well and fairly priced.

    I'll let you all know what the nurse says about the neulasta shot.

  • zuffa
    zuffa Member Posts: 95
    edited December 2008

    Regarding Vitamin C/Neulasta - they work on the immune system in different ways -- see below:

    NEULASTA: 

    Neulasta belongs to a group of drugs called colony stimulating factors. Neulasta stimulates the growth of neutrophils, a type of white blood cell, which are important immune cells that fight infection caused by bacteria, viruses or fungus. Neutrophils can be damaged by chemotherapy and leave patients susceptible to severe infection. Neulasta works by binding to areas on immature blood cells, which stimulates the blood cells to grow, reproduce and mature into neutrophils. Neulastais a long-acting form of another commonly used colony stimulating factor, Neupogen (filgrastim), meaning it stays active in the body for a longer time than Neupogen.  

    VITAMIN C

    Researchers at Memorial Sloan-Kettering Cancer Center in New York studied the effects of vitamin C on cancer cells. As it turns out, the vitamin seems to protect not just healthy cells, but cancer cells, too. The findings were published today in the journal Cancer Research.

    "The use of vitamin C supplements could have the potential to reduce the ability of patients to respond to therapy," said Dr. Mark Heaney, an associate attending physician at the cancer center, in a press release.

    Dr. Heaney and his colleagues tested five different chemotherapy drugs on cancer cells in the laboratory. Some of the cells were first treated with vitamin C. In every case, including a test of the powerful new cancer drug Gleevec, chemotherapy did not work as well if cells had been exposed to vitamin C. The chemotherapy agents killed 30 to 70 percent fewer cancer cells when the cells were treated with the vitamin.

    A second set of experiments implanted cancer cells in mice. They found that the tumors grew more rapidly in mice that were given cancer cells pretreated with vitamin C.

    The researchers found that just like healthy cells, cancer cells also benefit from vitamin C. The vitamin appeared to repair a cancer cell's damaged mitochondria, the energy center of cells. When the mitochondria is injured, it sends signals that force the cell to die, but vitamin C interrupts that process.

    "Vitamin C appears to protect the mitochondria from extensive damage, thus saving the cell," Dr. Heaney said. "And whether directly or not, all anticancer drugs work to disrupt the mitochondria to push cell death."

    On the subject of wigs...I have a lace cap wig - it's really comfortable and does not slip.  I also wear a mesh cap underneath. Once the hair is gone or really short, the wig fits and looks much better.  The double sided tap sounds nasty -- hope I don't have to try it.

    Bold -- you mentioned cooking - if your wig is synthetic, stay away from the oven, the grill and the fireplace -- the fiber will not burn -- but it will singe/frizz when exposed to high heat -- similar to the way eyelashes sometimes singe when you stick your head too far into a high oven.  I generally wear turbans around the house -- and when biking, shopping, etc.  My oncologist provides them to his patients - lots of colors, very comfortable -- a seemingly endless supply. They look pretty good with some of those big earrings Cebula mentioned.

    TX #2 tomorrow - hope it goes as well as #1.  I have been working through so far -- taking chemo on a Weds, staying home Weds - Sunday.  I find that the intellectual stimulation of work takes my mind off cancer/chemo.  My doctor gives Neulasta and Emend to all his patients.  Most insurance companies will cover the Neulasta, or at least, Neupogen -- however the Emend is another story.  My insurance covers it for $30.00 -- but if insurance doesn't cover it, he finds other ways to provide it to his patients (samples, arm-twisting with the drug company, assistance with various resources regarding co-pays, etc.)  Everyone he treats gets it. Emend is truly a miracle drug -- as is the Neulasta. 

    Merry Christmas, Buon Natale, Joyeux Noel, Feliz Navidad, Happy Chanukah, Happy Kwanzaa -- may our hearts be lifted and our bodies stay strong!

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    zuffa, thanks, that makes sense now!

    As for wigs, another thing to stay away from is a hot dishwasher! Anything with hot steam, she said. We all just need a maid!

  • havehope
    havehope Member Posts: 503
    edited December 2008

    Good luck to this week divas:  

    ENFENETEE, Grancy11, mimiwhite,  colleen1960, LindaBusEd, mmliv, lisasayers, msbusdriver,  cindyrellacleans, Brenny.

  • zuffa
    zuffa Member Posts: 95
    edited December 2008

    simvog - I am getting TX this week too -- strangely enough, I find myself actually looking forward to tomorrow.

  • havehope
    havehope Member Posts: 503
    edited December 2008

    Zuffa:

    Good luck and I hope you will have a smooth time for Holidays!

  • Lainey64
    Lainey64 Member Posts: 740
    edited December 2008

    I'm at work and starting to feel miserable.  I took a Zofran this morning around 7 a.m. and just took another one but I think I waited too long because I'm feeling nauseous.  I hate to be a big baby and whining, but my wig is killing me!  I have no one else to complain about to about this and know you all will understand.  We had our holiday party and white elephant gift exchange today and everyone is running around having fun and I'm feeling horrible but trying to force a smile on my face.  I'm giving myself until 3pm and if I don't feel better by then I'm going home.  Ok I feel a little better after venting.  Sorry to be such a downer today... :(

  • havehope
    havehope Member Posts: 503
    edited December 2008

    Lainey64: 

    Sorry you don't feel well. Go home and relax. Your health is more important then anything right now. Also, try to burp Embarassed. That worked for me when I was nauseous. Hang in there. It will go away.

  • zuffa
    zuffa Member Posts: 95
    edited December 2008

    Lainey64 -- simvog is right - your health comes first.  If I remember correctly, you are getting Emend -- but you are still experiencing some nausea.  I haven't actually had any nausea, but find that peppermint candies, peppermint tea and ginger ale soothe my stomach if it feels a bit unsettled.  Burping is good -- belching is better!!!   Stress can also bring on nausea and the holiday party was probably a bit stressful, especially if you weren't feeling well to begin with -- a good rest will help set you right. 

  • EleanorJ
    EleanorJ Member Posts: 752
    edited December 2008

    Lainey, sorry you're having such a bad day. Hope you feel better by now. Get some rest!

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