Chemo starting in December 2010

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  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011

    Hi everyone!

    I've finally had two good days in a row after my last treatment a week ago Thursday. Still feel a little nausea from time to time though.

    This might sound strange, but I am feeling a little angryish about how people minimized chemo treatment, with the "it is so much better nowadays". Granted, I don't know what it was like for people back then, but this certainly is not a walk in the park! It's been my own problem, but I have felt like something is wrong with me that I have had such a hard time with the SE's.(my own sisters even have been surprised at the side effects!Yell) I've thought it could be all in my head or that I am a hypochondriac type, as well as suffering from guilt that I am not working. I really almost fell out of my chair when my nurse told me during my forth treatment of AC that very, very few people work when they are on what I am on!  I realize maybe some people might have known chemo isn't as easy as it is made out to be, but were trying to stay positive for my benefit...but rawrrrrrrrr!!! Possibly roid raging at 4:00 am here ladies, so bear with me please!

    I had the BEST (Laughing) visit with the doctor this last time with my oncologist. The most interesting thing to me was her response when I told her I was at the point of dreading even going to the hospital-feeling like I had to throw up, let alone for my treatment. I felt sick when I went there for my look good feel good class because it was up in her office. I said I realized this was all in my head-but she stopped me. She said that it was also a fight or flight response-she was like- "Hey, your body is telling you what we are doing is not good for you." She totally made me feel like I wasn't a nut job I 'm feeling I am! She said she was glad I told her all this because she was going to put me on the acccelerated treatment because I was taking the AC so well!  (4x every two weeks for 8 wks of Taxol) She also said that the steroids were possibly causing my emotional rollercoaster, after I said that 4 days out after treatment I was feeling like quitting and that I can't take anymore.  She said the Taxol 12 wks at once a week will be easier to tolerate and that I will be on less steroids.(this was the original course  of chemo she said I would have.) OK,  so maybe she just doesn't want me to quit, but she seemed much more friendly from the very start of the appointment than usual! My husband laughed when I told him and said "Thats probably why you have been swearing so much!" Totally out of character for me~! (well, kind of!)

    Hoping everyone has a good as possible weekend! Hugs to all! Cathy

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    hopefortomorrow, i get the exact same feeling when I have to go in the cancer center. I want to just puke!! Glad to know it's not only me feeling that way!!

    Hope everyone is having a good day, with minimal to no SE. I am coming out of my 4 day chemo fog. hoping to get something done today.

    I start taxol in a week and a half. instead of doing 4 dose dense cycles, doc thinks we should do 8 weekly instead. I still haven't found anything supporting the 8 weekly trend, but, I am starting to wonder if it's because I am extremely ( 95%) ER/PR+ and HER2-. and i will be doing rads and i will be doing hormonal therapy. which upon reading up on, seems to be very effective against er/pr+ cancers. I am in a clinical trial where they are testing tamoxifen  vs. exemestane. i got chosen to take the exemestane so i guess we will see!!!!

    again, hope all are doing well, going to put on my wig and run to the bank and grocery store! feeling a little girly today!!

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    I hate being so far behind everyone, since I started at the very end of December.  The upside is that I have learned a lot from you guys... I still have 2 more DD AC to go, next one is this Thursday.  My onc is planning for 4 DD Taxol -- I will have to ask her about this approach... I am an emotional wreck, and I imagine that the steroids are contributing to that.  I am counting my self lucky that the physical SEs have been  manageable, so I have been able to keep working eseentially full time, so far I have only needed treatment days off.  But the emotional side effects for me have been debilitating.   I guess you get one thing or the other.......

    What are you guys doing to stay sane?  I haven't yet used any formal support systems, like our local cancer wellness house, or the American Cancer Society.....  I have several BC survivors that I know, including family members, and that has been a help.  I should feel blessed that so many friends and family have provided loving support... but I am sick and tired of feeling like an emotional wreck.... every time I look at my four children, I am just sick with what this is doing to their happiness.  It's hardest on my fourteen year old daughter, I think, my oldest.   This season also brings four birthdays in the next two weeks, which is hard, since it should be such a time for celebration, and I don't feel like celebrating, but three of these birthdays are my children's.... I need to be able to put on a happy face for their benefit and make it fun. 

    Sorry for the rant, I feel better just for having a place to put these feelings into writing, and having someone hear them.  My poor husband, who is so wonderfully understanding, but has to be worn out by me at this point. 

    Thanks for listening, hope everyone is having a WAY better weekend than me.......

    Lisa

  • shelbytroy12
    shelbytroy12 Member Posts: 26
    edited January 2011

    Lisamomoffour

    Rant all you want! This is the place to do it.  I have  a good support system as well but sometimes you just need to talk to others who have been through it.  I am not having a good weekend either - so far!  I am two weeks out of my last infusion. The second one went WAY better than the first one due to the Neulasta.  Wish I could have been given that the first time. I didn't have many of the SEs I had the first time.  But I did catch a cold/flu thing and have had to deal with that for 2 weeks now.  Feel miserable - i just cant seem to catch a break and deal with only one thing at a time!  So I am probably taxing the patience of my family as well.  They're the ones we take stufff out on, right?  Nobody understands how it feels to be miserable and scared and sometimes still shocked about all this stuff.  So, hang in there. We understand.  I joined a local support group and I really like it.  Take one day or one hour at a time. And please take care of your self.  No guilt, ok??

    Michele

  • spartina
    spartina Member Posts: 68
    edited January 2011

    Hi all,

    Last E and C DD treatment last Monday and my week has been full of fatigue, queasiness and lack of appetite. Yesterday I developed a fever of 100.1 degrees and it's been bopping up and down today.  On Monday I was so elated that I had had the last dose of the hard stuff.  Forgot, I guess about the days between.   My first Taxol is on January 31 and I'll be getting them weekly for 12 weeks. Spring will be here when through with them.   

    It's been cold, cold, cold here on Long Island so I'm just staying inside and resting.   

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011

    HDAngelbaby and Lisa- I was looking at our diagnosis dates and cancer types.. we all seem to be so similar-same treatments too.

    Hdangel- I got the impression from the Doc that taking the Taxol for 8 wks or for 12 wks was essentially the same, it was just a matter of how well you can tolerate it- the upside being that you get it over with faster by doing it for 8 wks. She didn't say one way was more effective over the other? I will also have to take tamoxifen after the rads. my ER and PRs are also high-97% and 98%.

    Lisa- this is just a thought...do you have the option to take some time off work and get disability? I was just talking to someone yesterday that is a 4 year survivor-she did not work, and had the chance to relax...she said another friend that didn't take time to slow down and rest, and  worked through it all has had a harder time emotionally and having all kinds of problems. (She is also 4 yrs out of treatment). She really wondered if her friend was having more problems because she pushed herself too hard.  I realize it all depends on the person and everyone is different, I just wanted to put that out there for you if you might be trying to 'do it all' but really need a break. (I'm not saying that I think you do-you only would know for yourself)

    For myself, I have always been a very flexible person. I have always tried to go the extra mile in all areas of my life I am wondering if it is time to be a little more 'me '[centered for my own benefit-not to be selfish, but sometimes I think we get so caught up in helping our friends and coworkers and putting our loved ones first that we forget to take care of ourselves?

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011

    Oh one more thing- I am getting brown spots! Is anyone else? I  thought my hands have been looking tan- and tonight to my horror one of my brown spots on my chest has grown from being the size of a dime to about the size of a quarter!? I'm also having trouble with really bad headaches. The ONC thought it could possibly be the anti nausea meds causing them. Anyone else having them?

    Spartina, I hope you are feeling better and you aren't catching something. It is a great feeling to be through with that last treatment of AC!

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    hopefortomorrow,

    thank you

    i really appreciate that you were able to get a gauge from your doc. thank you so so much!

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    thanks, hopefortomorrow, for getting a perspective on the difference between the 8/12 protocol for taxol... I'll be asking my onc about that on wednesday at my pre-appt for my treatment on thursday.  Looking forward to being able to say 3 down, 5 to go by next weekend!

    That's an interesting perspective, about taking time off.  To be honest, I'm more worried that being home during the day would make me worse emotionally, as i do have really good supportive friends at work, and when I was home recovering from my mastectomy, I found the hours when I was alone to be the worst.....  I am obsessive by nature, when I'm focused on something, I'm REALLY focused on it, so that character trait, while helpful on other fronts... not very good when trying to deal with the breast cancer beast.

    I am just starting to read the Anti-Cancer New Way of Life book.  Interesting stuff... hoping that will help me take some control over factors I can control (are you sensing a type-A personality here?  Tongue out ). 

    hopefortomorrow -- we are neighbors, I live in Downers Grove.  Have you done any of the programs at the Hinsdale Wellness house?  I am considering going to their orientation next Monday night.

  • peacebear
    peacebear Member Posts: 10
    edited January 2011

    a question.....im having low blood pressure. registering 90-92 for the top number. i have a nurse that comes once a week because i have a picc line in my arm. she's getting concerned, mentioned im so pale i may need blood....anyway i'm on bedrest....i did some random looking online, would it be my picc line causing low blood pressure or is it chemo treatment? low blood pressure is new to me lol (type A personality:P) and staying in bed is already driving me crazy!! not seeing my onc till thursday....and i dont want to have chemo delayed slowed down because of blood pressure....

  • spartina
    spartina Member Posts: 68
    edited January 2011

    My onc at Memorial Sloan Kettering said that with 12 weekly treatments of Taxol you get more of the drug into you at less cost and wear and tear to your body and that it was associated with less recurrence.  For me this seems like such a long hard road but for a handful of weeks I'm willing to go with the 12 to up the odds of no recurrence. 

    Maria 

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011

    Hi Lisa, I haven't been over to Hinsdale wellness house.I am not sure if they are connected, but there is a house in Geneva that I haven't been to yet. I guess they have classes of different kinds, knitting and art, yoga, etc. Is the Hinsdale one the same kind?

    I  can understand how you felt when you had your mastectomy. I make myself crazy at home because I have all sorts of things to do, but then have so little energy and fritter my time away. I am trying to change that. I like to paint artistically, and I have been home since Nov, have I even gotten my paints out- No. Undecided Maybe tomorrow- I will be watching the Bears game today! Go Bears!

    Thanks Spartina for the Taxol info!

    Peacebear- I don't have the info for you about blood pressure, but mine has dropped alot too!  Maybe someone will have some info!

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    I don't know if Hinsdale and Geneva are connected.... i read the catalog for Geneva, actually thought it had more appealing offerings, but Geneva is a bit too far for me, Hinsdale is right up the road. 

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    here's a different perspective on time off.

    i think it depends on the type of job. and what you deal with on a day to day basis. If i had a desk job of sorts i think i could muster through. but i worked with the public. in retail. I was the woman that sold you your carpet, tile, laminate flooring, and then I was also the woman that got yelled at all the time for being out of stock, truck didn't come in, blah blah, not showing up in under 10 seconds to pull a box of tile off the shelf for them. I have wonderful co workers, but dealing with that amount of stress and trying to tell everyone "i'm sorry i can't lift that box for you, " a  hundred times a day, thus pissing people off, just seemed more tiring than the chemo itself. there is no way I could work my job going through this.

    again, different job? maybe different attitude about it.

    I took the disability insurance. and i am glad i did., i get bored out of my mind sitting at home, especially the week i feel awful. but the week i feel good, i go out with friends, and do a date night with the hubby.

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    hdangelbaby -- entirely true....  whole different perspective.   My job is ridiculously sedentary.... but I am also lucky to be surrounded by people who are offloading some stress from my normal day to day responsibilities so I can get through the next few months.....the public won't do that for you!

    I also don't think that I would have had a disability case, unless the SEs were much worse for me..... my onc's office would only authorize the day of treatment until we saw how I reacted to chemo, and I had to go through some work to get my company to cover my treatment day for disability, so working at the moment is a bit of a necessity.  I'm sure if the physical SEs (remember I am the one getting HAMMERED with emotional SEs......  ) were worse then I could make the case.   

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    i finally found  a hobby to direct all my nervous energy into. crocheting. i hope my friends want blankets and mittens and scarves!! lol!

  • msjag
    msjag Member Posts: 416
    edited January 2011

    hdangelbaby, that is great! I am trying to read..but my mind wonders alot. 

    Hope, I have brown spots all over my arms now

    Lisa, I totally understan your emotins.  Today was the first day I had such uncontolable emotions, tears just flowing for no reason.  I was at work with supportive people, but I've never had these feelings of  such sadness and doom. I've never really had a breakdown through this all, only when I found out I was TN, maybe its all building up.  Sorry, not trying to take anyone down. wonder if its the chemo or the ativan I've been taking at night, can that make you so weepy?   I should be so happy, one chemo to go, but today is the worst, its big time "I can't believe I have cancer, what the heck".    I think being snowed in has hit home too, and another storm coming on Thurs ugh...I've had enough!!

    Hope everyone having teatment this week is doing well.

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    thanks to hours of nervous energy put into crocheting, my left had is cramped, big time! lol! maybe is shouldnt try to crochet an entire blanket in one night, eh?

    does anyone know the amount of time between chemo and rads? do you get a break at all?

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    My radiation oncologist said I should schedule my first appointment for the planning session two weeks after I finished chemo....said we could start right after that if I felt good enough after ending chemo. Sounded like I would have some control.



    bigger thing is that once you start you can't take any time off at all so if you need a week of vacation you are encouraged to do so before you start.



    Just what I've heard .....



  • TonLee
    TonLee Member Posts: 2,626
    edited January 2011

    I hope to take about 4 weeks and get fully expanded before rads....but hope in one hand and....lol

  • Lawleigh
    Lawleigh Member Posts: 56
    edited January 2011

    Wow....a lot going on out there so I am just going to try to respond and say thanks for all the good advice.

    It was great to hear about the fight or flight instinct because like many of you I am so nauseaus just going to the Cancer center its amazing I don't hurl during infusion.

    It was also good to hear the different views on working.  I am self employed as a Realtor very busy doing short sales and helping others which is a good distraction.  However, I am fortunate to have a biz partner who deals with the "real people" right now and I am able to do the behind the scenes mitigating with the banks etc.  My first week after tx is a tough one and then I get to go into the office almost full time the 2nd week.

    I just finished my 4th DD AC and will start the Taxol on the 3rd of February followed by radiation most likely.  Then of course the Tamoxifen (does it ever end)  I am hoping new boobs for Christmas...lol.

    Anyway, thanks to all for your support and your rantings as they help me feel normal.  This is a great place to vent and to read about all of your triumphs and frustrations.  It is hard to express all of our feelings to our families as they have to be exhausted and I can't remember the last time my husband complained about anything....what a guy

    Leigh

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    I got my boobs. my own natural ones. I'm trying to not go back to work till after my 30th b-day ( falls on memorial day, and you CANNOT get that day off work no matter who you ask and beg) so i should be finished with chemo around end of march/early april, then take a couple weeks to recover, then start rads, and try to stay off work till at least end of may.

    this b-day is a very special one, and i refuse to work with the public on that day. not only am I turning 30, but this is the first birthday since the big C. No one is taking the captain morgan away from me that day! lol!!!

  • karebear76
    karebear76 Member Posts: 288
    edited January 2011

    Evening ladies.

    I got my genetic testing results back. I am one of the lucky 2% that come back with a defective gene that they can't tell if it is poss. or neg! How fun. So my family is so willing to get tested and see if any of them carry it. This will help determine if it is indeed genetic or not but it is mostly for research as they have never seen this variation before!!! CRAZY!!! So no real results except that I think a double mastectomy is in my future. We will see what the doctors have to say about the ovaries. I am leaning toward taking them as I have fibroids and cysts that could easily turn cancerous and I DON'T want to deal with this again. I have my second opinion in Boston on Wed.  

  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    msjag -- thanks for your response, glad to know I'm not the only one melting down.  I was doing FINE yesterday and today for some odd reason, almost felt good... which makes me suspect some of the ups and downs are side effects of the steroids.  but then I melted down this afternoon for no apparent reason, popped a xanax, and calmed myself down enough to call the wellness house in my area and ask for some counseling sessions.  Probably should have done that awhile ago. 

    I am so amazed by those of you who are staying so positive through treatment.... my hats off to all of you! 

  • lindaa
    lindaa Member Posts: 119
    edited January 2011

    peacebear - i don't think the picc affects bp unless there is an infection.  My bp has wavered since being on chemo, but it is also because we are sick!  I have to sit quietly for a couple of minutes before they take it or my numbers are way off.  Drinking water seems to help and it also helps for blood draws.  My picc wouldn't do blood and they told me I had drink more a couple of days before treatment.  Why do you have a picc instead of a port?  Flushing it daily is a pain.  i have my picc because my port got infected - you'll know from the pain. 

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011

    Angel- I can so relate to begging for days off! I am a retail assistant store manager (not my life's dream! lol) My boss is always holding big sales events over my head- "Well I'm not so sure... we have this coming up..." and sometimes I don't know until the week before. Well at that point I would tell her I am going anyways! When part-timers ask..oh sure, no problem! You would think I would hold some rank!  She is the first manager I have had that is like this, though. I am spoiled by my last manger of 3 years that scheduled whatever I needed. She always made me feel so valued!

  • hopefortomorrow
    hopefortomorrow Member Posts: 193
    edited January 2011
    Karebear- my genetic tests came back negative, except I have a slight abnormality on one that they don't know what it means! lol I am giving them permission to use my results for study- and the doctor said whenever theyfigure it out they will let me know what it means!Undecided
  • LisaMomOfFour
    LisaMomOfFour Member Posts: 465
    edited January 2011

    I was tested years ago as all of my maternal cousins are BRCA1 positive, but I came back negative. A relief for my three daughters..... However my breast surgeon feels I still have some genetic risk that technology just hasn't identified yet .... So confusing....if I am truly at genetic risk, do I get the recommended oopherectomy recommended for BRCA positive women? So confusing.

  • hdangelbaby
    hdangelbaby Member Posts: 731
    edited January 2011

    got to go to the mountains today! woo hoo! it was a nice break from piddling around the house! had lunch with the hubby afterwards then off for a few beers!

    it was a nice break from everything related to cancer. i wore a new hat today and rocked it, without the wig ;)

    hope everyone had a great and minimal to no SE day!

    i still have stomach/bowel problems, but for once today , most all of the day, i didn't think about them!

    (((HUGS)))- angel

  • sammolisa
    sammolisa Member Posts: 180
    edited January 2011

    Morning all,   I am off to my first TAXOL tx.   Taking some cold packs for my fingers. and a blanket!  I'm already cold just thinking about it.  It snowed last night here in Nash.   Not  much - about an inch but I'm sure most of the city is shut down.    I will try to post later tonite and let y'all know how I feel after the taxol. 

    Love to all,

    Lisa

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