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Chemo in Sept 08

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Comments

  • curlieqs
    curlieqs Member Posts: 806
    edited September 2008

    Bar62, sucks about the docs comments and how he lets you know that he is cutting you a break. Give ME a break! I am an RN too, and all I can say is do what you would tell a patient of yours who would be going through the same thing. If you think that your care is being affected by this then my opinion is you should say something. But, if you feel it is not being affected, then I would say jack and just let it be........pretend you are at work listening to them complain! LOL! If you personally know this doc, he/she is probably just venting frustration. It is sad though how many discriminate against Medicare. My second job is at a nursing home and I am appalled at times when certain things/meds are not ordered because, "Medicare will not cover it". Makes me want to dig into my own pocket and help out, but unfortunately have $ struggles of my own.

    Good luck to you and hang tough Smile

    Horselover and prettymess, sorry you feel uck. I hope today is a better day for you guys and for all those who had less than great days yesterday. I wish away all the headaches, the nausea, and pains, and the blues. I see my Onco doc today so things will be rolling for me too............

    Hugs and prayers to all.

    K

    K

  • bar62
    bar62 Member Posts: 221
    edited September 2008

    {{{{to you horselover}}}} and to everyone here.

    Newbie to this board...I  started chemo (AC) yesterday. My doctor  told me that he will decide how many weeks apart I receive my chemo, either two or three, depending on how well  I tolerate it. I am 63 years old with multiple autoimmune illnesses--I could be a poster child-- Asthma and Diabetes so I appreciate that.

    I am one day past my first chemo and no longer as frightened as I was before yesterday. I had an awful time with Methotrexate, when I took it for my Rheumatoid Arthritis  a few years ago, even though it put me in remission. 

    My  doctor administers chemo personally in his office: I got all my drugs by IV drip in 250cc of fluid. I don't think I could take these drugs via IV push. My doc told me to watch for snuffly nose but it never happened.  He also gave me an oral medication and an IV push of Decadron. He prescribe an very expensive anti-nausea drug,Zorfran I think, but Medicare gave me generic Phenergan: so far so good.

    SO far So good. fingers xxed.

    Because I have only a Medicare Advantage plan now--no more secondary sob-- he did tell me if it got bad for me he would admit me to the  University hospital  Cancer clinic...fingers xxed please.

    He also told me that contrary to some literature--he is deeply involved in Cancer research--Lupus patients; I am in active skin lupus,  should still be cautious about Radiation therapy. I am seriously considering not having it now.

  • Tanzie
    Tanzie Member Posts: 115
    edited September 2008

    Adding PEnTE (Pattie) and bar62   Welcome to the list, Ladies 

    Sept ChemoGals!

    Sept 01 -   FloridaMom     TAC (Port placed Aug. 29)

    Sept 02 -   Jacuelyn32    TC or TAC

    Sept 02 -   kmg1015    TC x6

    Sept 03 -   2z54    (Port and SNB Aug. 28)

    Sept 03 -   horselover     A/C x4 every two weeks  T x4 every two weeks  (Port placed Aug. 29)

    Sept 04 -   SingaporeChris    FAC

    Sept 04 -   Emily2008    A/C x4

    Sept 05 -   yuyueno    TC x6 every three weeks (Port placed Sept. 29)

    Sept 05 -   BrandonMom   

    Sept 08 -   woorus     6 tx every three weeks

    Sept 08 -   Lili46    TC x4

    Sept 09 -   Tanzie    A/C x4 two weeks between (Picc Line inserted same day)

    Sept 09 -   cjh   

    Sept 09 -   HeatherL      FEC x3 / TC x3

    Sept 09 -   lyn117      EC & F(5FU)

    Sept 10 -   theprettiestmess     FAC & T

    Sept 10 -   bar62        A/C

    Sept 11 -   klfh        tx x6  three weeks apart 

    Sept 11 -   TheMissingWink      (Port placed 9/08)

    Sept 11 -   oldlady     TC x4 every three weeks -- final treatment something else

    Sept 15 -   Sue508    TC x4 three weeks between

    Sept 15 -   floridaeyes     

    Sept 17 -   Priz47     A/C (Port placed 8 / 28)

    Sept 18 -   kimy      TCH  every three weeks

    Sept 19 -   Juli50     A/C x4  every three weeks  T twelve weeks

    Sept 22 -   tamyintexas

    Sept 29 -   PEnTE (Pattie)    

    Sept ?? -   Curlieqs

    Sept ?? -   bettysgirl    FEC+T

    Sept ?? -   HopefulLady  (Port placed 9/11)

    Sept ?? -   6cooks       T - A/C

    You girls please let me know if I need to add, or if I've forgotten anything!

  • Tanzie
    Tanzie Member Posts: 115
    edited September 2008

    A little more headachey today, and I still have the unsettled stomach.  Dry mouth is getting to be a big issue too.  Ugh,  I'm constantly having to sip on something-- which I guess is a good thing.

    And is it just me, or am I the only one that smells like chemicals?    I don't smell it all the time, but every once in a while I'll catch a whiff.  

    {{{{{HorseLover}}}}}  I'm praying that every day just continues to get better for you.  You've had a horrible time of it, girl.   I know exactly what you are referring to when you say 'burn'.   It's like pure acid!  And I can totally empathize!  I don't know any way to make it better though, sorry....

    PrettiestMess--  I had a sneezing fit right after my nurse pushed the A into my line.  I also had a runny nose for the rest of the afternoon.  Something I wasn't expecting.   The headaches stink, don't they?   I've had a low level headache every since tues.  Tylenol is my friend. Smile

    Curlieqs-- Good luck with your appointment today!

    klfh, Winkster, and oldlady--  thinking about you today!

    Take care,

    Tanz 

       

  • bunnyrabbit
    bunnyrabbit Member Posts: 5
    edited September 2008

    Sign me up I start chemo 9/22 TC cocktail of choice.

  • jc135
    jc135 Member Posts: 11
    edited September 2008

    Sign me up too, starting Monday 9/15. TCH every three weeks, but H weekly (although I may try to change that after the first few weeks---the onc said we could see about it after we see how I tolerate it. It's an hour and a half to two hours each way to the hospital, so it seems nuts to spend three to four hours travelling for a 30 minute infusion.)

    Got my wig yesterday from "Girl on the Go", they come to your house and its relatively painless process. They did a great matching job...my friend says it looks just like my real hair, no one will ever know. But now I can't bear to look at it, and its in the closet until I need it.

     I plan to spend my last weekend eating at my favorite restaurants and I may even have steak two nights in a row! (Figuring I won't be able to chew steak later, given all I've read about mouth sores and taste issues etc.)

    good luck everyone!

  • bunnyrabbit
    bunnyrabbit Member Posts: 5
    edited September 2008

    Hi jc135 I am in the market for wigs also...I live in a small town (is Girl on the Go a web site).  I will probably shop by the web..what kind of wig do you recommend. Thanks

  • yuyueno
    yuyueno Member Posts: 35
    edited September 2008

    Hi, Everyone!

    Just wanted to update, I am still having hard days (today is Day7), I could not even go to work yesterday due to tiredness and GI issues.  When am I gonna getta out of this!!!

    Horselover,

    Good to hear from you. What an ordeal you had to go through.  I am glad things are getting a little better. Lately, I have been mad, this is is no way things we all should be going through!  We should be out there enjoying our lives instead!  I know being mad does not change a thing, but hopefully I can transform this madness to my energy to fight through this..

    Tanzie,

    How did your chemo go?  I hope it went smoothly with no major SE.  My next chemo (#2) will be on 09/26. (My port has already been placed on 08/25/08). Thank you for tracking all of us!

    Donna,

    Thanks for the cyber hug!  So, you got your port done, when are you starting your chemo? 

    I would love to talk and respond to everyone, but my chemo brain is not allowing me to be so organized and attentive ;(  Talk to you ladies later!  and Good luck to prettiestmess today!

    Yuyu

  • PEnTE
    PEnTE Member Posts: 14
    edited September 2008

    Hi this is Patti,

    Thank you so much for adding me!!  I had been waiting for my Oncotype DX test results from my first lumpectomy.  My score came back at 21.  I just had my resection of right breast and port placement on left side on Monday, 8 Sep.  I will begin chemo on 29 Sep...AC every three weeks for 4 months.  I was hoping to participate in a clinical trial TC vs. TAC.  But my Onco told me that my tumor was not big enough at 1.7 cm.   So looks like I will get the standard form of care. But, I'm good with that....i think Undecided 

    I'm a bit sore...mostly in the area of the port placement.  I'm experiencing a slight tightness on my left side.  Especially when I take a deep breath.  Anyone else have this problem?  Is this normal??  The Doc also had to take out the rest of my anterior margin because it came back positive the first time.   I'm a little nervous about the fact that the Doc had to take as much as he could right up against the skin.  There's a black area (about the size of a dime) close to my nipple where he got really really close to the surface of my skin.  I'm worried that that area will not heal properly before I start chemo.  I'm also thinking down the road if I decide to get an implant how will that thin layer of skin hold it in??  There's so much I don't know... Do any of you have or been given advice on diet, supplement's, herbs, etc., to keep energy levels up? 

    I also want to share that I just started using a hair and scalp product call Nioxin. Normally used for thinning hair.  I was going to wait to use it a week before I start treatment but a girlfriend suggested that I start using it now.  Never tried it before but I figured it couldn't hurt...right?  Anyone have experience with this product? 

    I would love any advice any of you ladies can offer!!

    Thank you so much my sisters!!

    Love, hugs and Strength!

    Smile Patti

  • bettysgirl
    bettysgirl Member Posts: 645
    edited September 2008

    Hey ladies! The list is a GREAT idea. I had my port inserted yesterday and feel pretty good. Just a little stiffness and it's more of an ache not hard pain. ( I had read horrror stories) I go to the oncologist Monday so I will know then when the start date will be...looks like a Sept. start and I am thankful my hubby and I got to sqeeze in an early anniversary trip before we start. Good luck to all of you!!!

  • bar62
    bar62 Member Posts: 221
    edited May 2009

    Hi Patti and fellow Sept group members,

    Thanks so much for adding me to the group. Now I am going to read backwards and get help and encouragement from all of you.

    Thanks for the advice. I took my  Medicare Doc unhappy post down here since I had posted it in another area as a topic starter. I am better today::) I feel for my doc in a  way because I also like my paycheck and miss it a lot since I've been on Medicare disability, but if he mentions  those awful Medicare folks again, I will gently let him know how much it upsets me and hope he Hears me. I have between 6-8 more sessions to go depending on how well I do so I am going to stick it out since I had a very good infusion day yesterday.

    fingers remained xed. love and hugs to everyone Smile

  • bar62
    bar62 Member Posts: 221
    edited September 2008

    I just talked to my doctor and he is giving me a boost Monday of Neupogen or Procrit. I hope it's IM and I may need hydration.  I also asked him to  please not mention how Medicare doesn't pay him enough. He said OK...now I hope I can get through this OK with him;if I need Chemo again, I am may  not  use him.

  • PEnTE
    PEnTE Member Posts: 14
    edited September 2008

    Dear bar62,

    I'm sorry but I'm not familiar with your Doc's comments about Medicare not paying him enough...is there more to this story?  It breaks my heart to know people like him can be so inconsiderate!... That's just my opinion.  I'm sorry you had to deal with what ever else he said that made you feel uncomfortable.  I think if it were me, I would have kicked him to the curb and found another Doc.  How dare he say that!!!Yell GURRRRR!!!   Physicians are supposed to do what they do to HELP people not make the patient feel guilty in any way!!  If that's his goal then he needs to find another profession.  Sure we all have our "not so good" days.  But that is no excuse especially in his line of work! 

    Ok....I'm letting it go now...sorry bout the frustration...  It just erks me to no end when healthy people complain about the silliest things.   You know what I say to them?..."Well at least you don't have cancer".  I know that sounds harsh but PLEASE don't tell me that you are not getting paid enough to make the payments on your Mercedes.  Give me a break!!  Ok, Ok, stopping now....Laughing

    Anyhoo...I start my treatment of AC on 29 Sep and I'm so ready to get this over with like most of the ladies in this forum.  Not sure about any of you but I've already been having dreams of my hair falling out.  I'm not really sure if I will do the wig thing...It's amazing to me that most all of you are going back to work!  Unfortunately my job as a fitness trainer will prevent me from going back to work until I'm done with treatment.  During the winter here in Colorado, it would be a big risk for me to be constantly surrounded by crowds of people working out not to mention coughing and sneezing.   Tiss the season...Undecided

    How did you react to the boost of Neupogen or Procrit?    Did it help??

    Big Hugs!!

    Patti

  • Emily2008
    Emily2008 Member Posts: 30
    edited September 2008

    Hello all, I was thinking that those of us who recently started should keep one another updated on when the hair starts falling out.  I was told 10-14 days after Adriamycin, which for me was one week ago exactly.  So, possibly this week or into next I may start shedding.  Anyone else told their would fall out?  It will help me to hear how others are handling things.

    P.S. I never thought water could taste like aluminum foil, but it really does!  I miss my taste buds :(

  • BrandonMom
    BrandonMom Member Posts: 209
    edited September 2008

    Emily,

     I think I'm an over-achiever when it comes to hair loss.  I had my chemo Setp 5, and have already started losing handfulls of hair.  I too had heard 10-14 days, but in my case, it is definitely starting early.

  • yuyueno
    yuyueno Member Posts: 35
    edited September 2008

    Hi, Emily

    I started my chemo on Sep 5 (TCH), no hair loss yet, but my scalp is burning and hurting already...

  • Seven11
    Seven11 Member Posts: 13
    edited October 2010

    Hi all - I had TCH tx 1 today - yay!  only 5 to go!  I am tired, but otherwise feeling ok.  I hope everyone else is doing well.

    Love,

    Katie 

  • curlieqs
    curlieqs Member Posts: 806
    edited September 2008

    I hope everyone is doing well!

    I saw my onco doc today and he told me I may NOT even need chemo. My surgeon said I  sure would so I was expecting it, and took lots of time to digest it. He says My ER receptor % was so high , he says chemo would probably have no benefit but is running now an oncotype test to see if I would benefit or not. He is also sending my tumor off to another facility to have it restaged due to the suspicious lymphovascular invasion. So, great news indeed and now have to wait another 2 weeks for the results. Did anyone else have this same issue? Just curious.  A part of me is like, who should I trust? One doc says oh yes you will need it, then another says no. I will continue with my research I guess! If anyone had a similar experience, I would love to hear it.

    So I may not even be a part of this chemo forum afterall, but know that I am thinking of YOU ALL and wish you all nothing but a super speedy recovery, with minimal side effects, and a great attitude! I pray for you all.

    Have a good day, get rest, and take care of youSmile

    Hugs,

    K

  • Emily2008
    Emily2008 Member Posts: 30
    edited September 2008

    Wow, Brandonmom and Yuyu, already!?!  Mine was 9/4 and I was thinking at the earliest next week, but maybe sooner??? Overachiever, Hah!  LOL!

    My hubby is out of town this weekend and he's worried I'll lose my hair while he's gone.  i contacted some girlfriends to be "on call" in case I need some help with buzzing my head.  My sons will be around, but they're too little to help me.  They'd probably slip up and slice through my jugular!

     I bought some scarves, but now I don't like them.  I think they'll be too thin for fall and winter in Northern VA.  My hairdresser is Afghan and told me to go to "Arabic stores", to buy some scarves.  We have  a few ethnic stores near me, so maybe I'll check some out.  I think I need some that are heavier or lined so my head doesn't freeze.  I don't know how I'll feel to be bald.  I still haven't fully come to terms with my scarred up body and foob, so throwing in baldness is like adding insult to injury, KWIM?

    When I was at chemo last week, this gal walked in who was probably my age (mid-30s).  Looked really hip, trendy clothes, etc. BALD, BALD, BALD as a cueball with these huge sunglasses on that only served to emphasize her shiny white head.  She totally had it going on and she looked amazing.  Totally confident, smiling, too cool for words.  I looked at her and knew that couldn't be me. I would be too self-conscious, and my sons are already worried about people staring at me in the stores.  I think the best I can do is get some glamorous scarves and tie them up nicely.

    <<SIGH>>

    Getting used to a new normal is so hard. 

  • Lili46
    Lili46 Member Posts: 102
    edited September 2008

    Hi all...

    It's day 3 post TC for me. Belly's gurggly today, nothing tastes good and, like Tanzie and many of you, my mouth is very dry. I've never enjoyed popsicles as much as I have in the past 2 days. Also, like most of you, I'm anticipating the fallout. Tried my wig on today and just don't know if I can pull it off. It all seems so surreal at times. As Emily said,"getting used to the new normal is hard".

    Hope all went well today for the Sept. 11th ladies.

  • priz47
    priz47 Member Posts: 161
    edited September 2008

    PEnTE

    Where are you in Colorado? I live in Colorado Springs and I decided I don't want a wig even if I do go back to work. I'm supposed to return to the hospital on Oct 1 (I'm a RN). I have one silk scarf, 2 turbans (one is terry cloth) and another hat. I cannot bring myself to go look at wigs. My onc keeps saying i can get one free at the ACS, but I have such a block against it.

    I did go and get my supplies so I will be ready. I have my Biotene mouthwash, Benadryl, Maalox, Immodium, Colace,Purell. Anyone think of anything else?

    D

  • Juli50
    Juli50 Member Posts: 652
    edited September 2008

    Brandonmom: Which chemo drugs are you taking? They are not on the list.

     Juli

  • hopefullady
    hopefullady Member Posts: 102
    edited September 2008

    Port surgery went well today.   I will start the treatments next Monday, the 15th.  TC x4  3 weeks apart.

     We are getting to be a long list.   

  • theprettiestmess
    theprettiestmess Member Posts: 198
    edited September 2008

    Tomorrow, I start my ten day schedule of Neupogen shots. Oy.

  • BrandonMom
    BrandonMom Member Posts: 209
    edited September 2008

    Tanzie,

     I have a PICC line too! How is yours working out?  I had mine placed last Thursday and on Tuesday, it started kind of hurting under my arm.

     Colleen

  • BrandonMom
    BrandonMom Member Posts: 209
    edited September 2008

    Juli,

     AC every other week for 4 weeks.  Then Taxol every other week for 4 weeks.

  • BrandonMom
    BrandonMom Member Posts: 209
    edited September 2008

    Emily,

    I live in Northern VA too!  Let me know if you want to go wig shopping together!

    Colleen

  • Juli50
    Juli50 Member Posts: 652
    edited September 2008
    Brandonmom: Thanks... just wondering how quickly my hair will fall out Undecided
  • yuyueno
    yuyueno Member Posts: 35
    edited September 2008

    klfh,

    I am glad your chemo went okay today.  It sounds like you are on same drugs/schedule.  I am on TCH with 5 more to go!  Hope you are getting plenty of rest tonite.

    Regarding hair topic:

    I am so nervous about losing my hair, I sometimes wonder if it's better for me to shave it now.  I live alone and don't have anyone who can be "on call" to come and shave it for me.  I hate to wake up one day to get ready for work and have bald spots everywhere on my head!  Also, how do you feel about showing your bald head to significant others?  I am already nervous if my boyfriend will be able to accept and still find me attractive.  He kept telling me not to worry about it, but it does make me feel nervous and worry...

  • PEnTE
    PEnTE Member Posts: 14
    edited September 2008

    Dear priz47,

    I live in Peyton, CO!  What hospital do you work at?  I work as a fitness trainer at Schriever AFB.  Not sure if you are familiar with the civilian sector at military bases but I'm a NAF employee there.  Hoping to use my sick and annual leave and possibly get donated leave from co-workers and friends.  I've decided not to work while on chemo...I may change my mind if I go stir crazy this winter!  But for now everyone seems to think it's in my best interest to stay home.  The fitness center gets very crowed especially in the winter.  This is the time of year that people are constantly coughing and sneezing and the heat is cranked in the building.   I'm thinking it may be too risky for me.

    Correct me if I'm wrong but did you say you had a collapsed lung while have your port put in?  I just had mine put in on Monday, 8 Sep along with a resection.  My surgeon at the Academy (Dr. Russi) who is great BTW told me that if my arm seems to feel heavy to go get checked out right away as it could mean a clot.  Well I do have somewhat of an achy feeling in my entire left arm.  Think I should get it checked out?  I don't want to seem paranoid but I've also developed a dry cough and I'm finding myself constantly taking deep breaths.  I don't start chemo until 29 Sep at the Rocky Mt Cancer Center.  Your thoughts?

    Hope you are doing well!

    Patti :)