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August 2010...anyone starting chemo besides me?!

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Comments

  • rachel5738
    rachel5738 Member Posts: 658

    I had smoothies throughout my chemo to get my protein if I was having a hard time eating. My hubbie bought some protein powder and we mixed with frozen berries etc. Was great. I stopped drinking them since chemo--not sure why--just laziness I guess.

    Update on my genetic results: Still don't know but my appt with geneticist is moved to tomorrow which makes sense BEFORE radiation. Lizzie--like you said, I will NOT start rads until this is sorted out because if I do test positive then I believe I would opt for double mastectomy--and then if I need rads they could do it after. I have read that doing rads then mastectomy causes issues with skin recovery from surgery. My Rad Onco is supposed to call me today also about the results and to see if we are going ahead or not. This really has put a kink in the plans!

    Lizzie--further to your comment about big business--the genetic testing is truly something where ONE company has a firm hold on this business. I read a couple of articles yesterday indicating that the company has the patent and in the meantime is getting all tests/data etc from all patients. Canadian government had complained and there was some other complaints against this particular company. In the meantime, in Canada you have to wait 4+ months for results which makes no sense when you are in a treatment plan that could change based on the results. Craziness--this has really made me frustrated yesterday and today.

  • jsw--interesting about that study!  I need to understand more about LN involvement.  I just don't want this to be a tumor that shrunk but didn't go away.  I assume if it's a tumor they would remove it and do rads to that area.  I would seriuosly like to AVOID that......I hate having the game plan changed!  

    I just hope and pray this is nothing at all - praying it's a cyst actually!  I went to the chiropractor and he could definitely feel it.  He did a lot of pressing on my glands on the side of my neck and they really hurt!  I was surprised - and under my throat as well.  He feels I could be fighting something - but of course, that's inconslusive............

    I called my doctor and said "Should I still have the US since now we can definitely find it- or should I come back in and show you...or have a CT??"  She said no, go for the u/s DEFINITELY now.  UGH! 

  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Calamity, Said a prayer for you. All of these little bumps in the road add up and staying steady is difficult.

    We will all be waiting to hear from you and sending you lots of good thoughts until then. 

    Ginger

  • texasrose361
    texasrose361 Member Posts: 895

    Sweeny you blend it with a hand mixer? My husband made smoothies last month and buster my blender (it was almost 5 yrs old so it was time lol) We were just debating on buying another one...

    I cant say my smoothies are the healthiest LOL

    I use a frozen bag of mango, strawberry and pineapple i think (its a tropical sort of mix), milk, and low fat vanilla ice cream (so more like a shake lol)

    My husband likes using hte same fruit mix, milk and banana nut ice cream

    I've made yogurt smoothies using the vanilla flavored yougurt and frozen fruit i dont add any liguid to those though because the frozen berries liguify just enough

  • texasrose361
    texasrose361 Member Posts: 895

    Rachel and Calamity- Sorry to hear about y'alls bumps in the road... I hope everything gets sorted out soon for both of you

  • omaz
    omaz Member Posts: 4,218
    Hair - Got my hair trimmed and she did a great job.  Went to afternoon meetings with no head covering.  Happy about that.
  • LadyinBama
    LadyinBama Member Posts: 993
    Omaz: Post a pic and let us see. Today marks 1 month PFC for me, and I'm getting obsessed about  my hair. We were in a restaraunt tonight and there was a baby at the next table and I told my DH, "look, that baby has twice as much hair as I do."
  • omaz
    omaz Member Posts: 4,218

    Lady - Here is my hair 6 weeks after last chemo.  My face is still pretty full from the treatments but its getting better.

    Photobucket Photobucket
  • sweeney
    sweeney Member Posts: 311

    Wow!! Omaz, that's a LOT of hair. Good for you!!! You look great. Really healthy.

    Tex- yep. Handblender. But I use a tupperware container shaped for pasta, long and tubular to do the actual mixing. I don't have a real blender!

  • omaz
    omaz Member Posts: 4,218
    sweeney - I don't know if it helped but I used the elastogel cold caps during the taxotere infusions.  We weren't really able to keep my head very cold the whole infusion time since I only bought two of them but maybe it helped just a bit so that the hair came in easier. My scalp was very visible during treatment especially in the back and the top.
  • Gingerbrew
    Gingerbrew Member Posts: 1,997

    Omaz, your hair looks great. I have about 1/16 of an inch on my head white as is usual so far. My eyebrows are coming in brown, grey and white. Usually are only white. I can feel upper lip hair coming in now, grr.

    I am on Ceflex # 3 now for this breast infection I was surprised with yesterday. It is good the Doc spotted it because it is getting sore now and I am already in treatment for it. 

    My husband has an infection on his lip. He was pretty upset by it this Am and actually went to an urgent care this evening and got on antibiotics. He also made an appointment for Monday morning for a physical!  My radOnc asled him about his health and got his attention. I am so glad for him.  We are still new here and dont have a regular Doc yet.

    Hugs all

    Ginger

  • omaz
    omaz Member Posts: 4,218
    Ginger - As we go along I am surprised how often infections develop late!  I had one 10 days after surgery and thought that was late.  For some reason I thought that if you didn't get an infrection right after surgery you wouldn't get one - not true!  Hope the antibiotics do their thing quickly!
  • libraylil
    libraylil Member Posts: 325
    omaz I can't believe your hair!  It is awesome.  I'm now 6 weeks post TCH.  I can just now push mine over ( my DH told me I need some old timey butch wax).  I looking forward to losing the Hedgie the hedgehog look.  My oldest daughter was so sweet and asked me if I was cold and wanted my hat in the recovery room.  She knew I did not want everyone to see my hair.  I have been color correcting my hair for years, what a shock to see the natural color. libray lil
  • Ann97
    Ann97 Member Posts: 142

    Rachel and Cal: I'm thinking about you. Lots of prayers going your way.

    Omaz: I'm amazed by your hair.

    Lady: I do the same thing ... "Look, I have more hair than that (bald) man," or "Man, that baby has more hair than me." I think my family thinks I'm obsessed and well, I may agree. Today I bought a short hair magazine for choosing styles but I am so very far away from any of those hairstyles.

    Ginger: Sorry to hear about the infection. I hope the soreness goes away quickly.

    I saw my PS this week and got a date (Feb 9) for the exchange. I've been lopsided for quite a while now (part of the reason I hate the TE) and the nurse had told me she thought the left one was either put in upside down or flipped. The PS is not so sure about that. I just hope he can correct it so that this next procedure is my last.

  • rachel5738
    rachel5738 Member Posts: 658

    Thanks to everyone for your support. I met with genetic counsellor this AM and I am "normal" for BRAC1 and 2 gene--which means negative. That was great news. They did mention that this does not rule out that my breast cancer is hereditary--my maternal aunt got breast cancer at a young age also. The counsellor mentioned that the "science" behind breast cancer is changing all the time and they believe that it won't be long before a BRAC3 gene may be identified. Therefore, she said to keep in contact and over the next few years--if anything changes with breast cancer research--I can be retested. Part of my genetic counselling includes the fact that they sent a letter to my docs to support the fact that part of my screening now will include breast MRI's along with Ultrasound/Mammogram.  It was a relief to hear the news as now I can go ahead with rads and not worry about additional surgery at this time.

    Thanks again for your support, these little bumps can be hard but the support is so helpful.

    p.s. Omaz--you have a great head of hair--I am 6 weeks out and don't have nearly as much hair--my hair amount is very similar to a baby but longer. I am quite a ways away from worrying about a cut.

  • Ann97
    Ann97 Member Posts: 142

    Rachel, I'm so happy for you. :)

  • Rachel - me too on the brca negative but "proabably another gene at work".  However I'm also a believer that you can "change" your genes with good nutrition and lessen the chances.  BC is caused by genes plus something else.  I mean, whole families of women 100 years ago weren't dying of bc at the rate they are today.  My grandmother and two of her sisters had BC all at older ages - there were 9 of them, so that's a 1 in 3 chance among her siblings.  My aunt had ovarian cancer-- and has been fine for 11 years. 

    the whole thing scares the pants off me and that is one reason I'm doing the tamoxifen even though I really really don't want to.  

  • rachel5738
    rachel5738 Member Posts: 658

    Cal--agree with you. Counsellor said that there are thousands of genes at work in your body to potentially cause cancer--the two BRAC genes are just two of them. Hereditary factor cannot always be determined with the BRAC gene. It was interesting conversation. She said there is so much research all the time that once you are approved for genetic testing -- you can go back and request retesting if there is new research or findings. Potentially wouldn't do much for us because we are already diagnosed etc--but key for family members and kids for early screening/treatment.

    I'm with you on the Tamoxifen--don't like the thought of taking it everyday for so long but when you are "higher risk"--take what you need to reduce chances. I have been doing OK on Tamoxifen--really don't notice any big difference.

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Good day chemosabes and radicals-

    Rachel: I am so happy you are BRCA negative.  I am just so digusted that the one company that monopolizes the test and results held things up for you.  I would not worry about the aunt business.  If you are BRCA negative that is what you need to know relative to being able to pass it on to your boy's children should they have a girl etc... .   I am very happy you finally got your results.

    Smoothies: thanks for all the help/advice.   I am going to start experimenting next week.  I just received the "GE" version of the magic bullet for Xmas.   I am happy I can put that to use now.

    Omaz: look at that fur!!!!!!!   Your hair looks great.   It also looks warm where you are!   I can't get warm anymore...sometimes I think a warmer climate is in my future.  Perhaps I will go to nursing school somewhere warm :)   

    Tamoxifen: I am getting a little curious as to when I will have my last tx and then start tamox.  My hair is probably going to be pretty much back in and I have already started spotting so my body thinks I am off of chemo.  Going back on for the last tx is not only going to start with the hair loss and chemopause again but also stall my starting tamox.  Geez...I hope this all works out.   This infection is throwing off the timeline and my ability to get cancer-fighting treatment.  At least chemo and tamox are helping to fight, and helping my body fight, bc but an infected te is doing nothing but forestalling the best parts of this process.  Not good.

    Sleeping.....I am so loving sleeping!  I know my body has been through a lot between the infection, chemo and the surgery although I do look forward to a time I am not so tired! 

    I am actually going to nap and then I think, for the first time in 15 years, I am going to make stew!   It is snowing...what else is there to do?!

  • omaz
    omaz Member Posts: 4,218
    I had my rads simulation today.  They encircled a big area around my breast and extends down to my side.  Sheesh I hope that whole area doesn't get irradiated, thought it was just supposed to be the breast!
  • sptmm62
    sptmm62 Member Posts: 527

    Omaz:  Wow..lots of hair!!!

    Ann:  Congrats on getting a date for the exchange.  Must feel good to have that end in sight, hope it is your last surgery. 

    Rachel:  Great news on the BRCA negative.  They offered me a referral for the test back when I was first diagnosed, but I wasn't ready to deal with that yet.  I have been thinking about it now though.  Think I might go soon. 

    Lizzy:  Keep sleeping!  No better way to allow your body to fight the fight than to sleep so it has nothing else to do but fight the germs.  I am with you on the warm climate.  I grew up in South Florida and always wanted to go back but my kids are settled here, so I stay.  But since chemo, I just can't tolerate the cold like I used to.  And all my joints ache..like an old lady.  So, I too think that warmer climates may be in my future, albeit distant future. 

    Ginger:  Hope you and your husband both feel better soon!

    I got the results from the pathology yesterday....all polyps and fibroids were benign!! Huge sigh of relief! 

    On hair:  Now that I am now out in public with "my hair", Some of the guys at work were joking with me that I now again have more hair than them....and one of them pointed out that at least mine was growing back, his was gone forever..  Good point, something to be grateful for as we wait for it to grow back!   

    Have a great evening everyone!

  • omaz
    omaz Member Posts: 4,218

    sptmm - Good news about the biopsy, yay!!

    I have also been having sympathy with men and their hair loss.  Not too long ago I looked like that.  Changes the perspective.

  • 1WonderWoman
    1WonderWoman Member Posts: 1,796

    Omaz: perhaps you are getting BONUS rads!   They are giving you a little extra!  I know what you mean about men...I am starting to feel for the baldies!  I always kind of liked bald men but not the 1/2 or 3/4 bald but the totally bald.  Perhaps I will be more of a fan now! 

    Sptmm: don't encourage me...!  I think my cat thinks I am a cat as we both sleep about 22 hours per day!   Perhaps instead of the "Golden Girls" we will do the "BC Survivor Girls" and have a nice, big house in S. Florida where we take care of each other to the end!  It is snowing again and I am dreaming of warmer climates.   

    I must say I am a little bummed about not being able to finish chemo and move on to the next phase.  What a long, arduous road/battle this is.  It gets tiresome!   Oh no...I am getting sleepy again!!!!  

  • omaz
    omaz Member Posts: 4,218

    Lizzy - I bet you are bummed about not finishing chemo right now.  You were so psyched!  I must say, I do wish I could sleep.  I am trying the melatonin/anti-histamine thing, maybe it helps, I don't know yet, I'll give it a week or so.

    My rad onc just called back and said that they have to get the 'tail' of breast tissue that extends up near the armpit but they don't go deep into the underlying tissue they just irradiate the top breast part.

  • Rachel - Yeah, the second surgeon I saw said that I should see a genetics counselor.....she was the only one who recommended it.  I did ask my oncologlist and she said basically there is no point....we already know I have a family history and brca came up neg.  So some other gene is at work but it hasn't been isolated yet.  she did recommend I have my ovaries out after the five years of tamox are done - I will be 46 by then.  I never considered myself to have a family history - because everybody told me since my grandmother was 62 at her diagnosis, it was post menopausal and not hereditary.  I was told this several times.  UNTIL I got BC.  Then suddenly I had a "family history" because of my grandmother.  Then, I find out two of her sisters had it also!  =:O   On my dad's side, I have two second cousins who also had BC before menopause so that's in the mix too.  I hate this disease.

    The whole thing is so horrifying and frightening.  My mom has a friend who had a double mastecomy because she's brca positive even though she didn't have BC......

    OH - and am I reading the banner below correctly???  "CHEMO AFFIRMED SAFE IN PREGNANCY".   WHAT??!  How can chemo possibly be safe to an unborn baby! =:O  

    Lizzy - hang in there.  NOTHING with this disease seems routine and easy, that is for sure! 
  • texasrose361
    texasrose361 Member Posts: 895

    WHOOP WHOOP rachel so glad to hear you're negative

    Omaz- thats a lot of hair! Glad to see its growing back

    going to try to post a pic of my hair

  • Ann97
    Ann97 Member Posts: 142

    Stpmm: Yay on your news!

    You'd all be welcome  to join me here in ?? sunny Fl?? It is cold today. I know not anywhere near as cold as where you are. I'm a former Chicagoan but my body is no longer used to real cold.

  • IowaSue45
    IowaSue45 Member Posts: 422

    Hi Ladies, I had my PS appointment at Mayo in Rochester, Mn today, 3 1/2 hr. from home. Lady PS she is nice and YOUNG she looked only 30-35 a Canadian. I was hoping to get started this spring maybe 2 months after radiation but, my port is kinda low and a little in the way so she thought it would be better to wait until I am done with herceptin in Aug. plus the recovery time for DIEP is a good 2 months and I don't want to be recovering in the summer, I have a date of Oct. 18th. I'm a little sad about waiting that long, but I know it is for the best plus it will give my skin time to heal from rad. I was also glad to be a perfect candidate for this surgery and she told me not to lose any weight, or I wouldn't have enough fat to form breast.

    I hope each of you have a good weekend!

  • omaz
    omaz Member Posts: 4,218
    Sue - Sorry you have to wait but you are a perfect candidate - that's good news!
  • texasrose361
    texasrose361 Member Posts: 895

    Kel- Yeah its so weird cuz i have a cousin and an uncle on my dads side that had brain tumors but my breast cancer apparently has nothing to do with that (how the hell do they know! maybe there is some sort of gene that links the two that hasnt been found yet)

    I've heard of a case before i had bc myself so i didnt comit all the details to memory, but a young woman had a bi lat mx because she had a strong family history (sister mother few aunts) but STILL got BC in what ever remaining tissue was there!!!!! So even going to the extreme doesnt offer a guarantee!

    I am not seeing the same banner, but that has to be horrible- maybe when chemo is given it doesnt go into the baby's blood stream? that'd be the only thing i could think of that would protect the baby....