Starting Chemo Aug 09

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Sorry I've been out the last several days.  My anniversary was Sunday and I forgot, mixed in with Mardi Gras and my Mom's birthday - I'm lucky to remember to get dressed in the morning.  My husband pointed out that he thinks the radiation fatigue is getting to me more than I realize or want to admit and I have to agree.  But......... on the upside I did get out for Mardi Gras day and had a great time, paying for it today, but it was worth it.

    Weety - Wow, sounds like the budget cuts aren't going well at all, increasing class size not only hurts the children, but makes it much harder to teach and work with the children that need more help.  I'm sorry to hear that...............  My neighbor, who is my age (43) retired a few years ago because she said "they" were making it too difficult for her to do her job, she felt like the changes that were made made her less effective and she just decided to step away - she now does sub work part-time.

    Lilah - sorry no posting........... yesterday when I got home from the parades I told myself I'd hit the compute, but fell asleep instead.

    Hope everyone is having a great day.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    No worries Jen :)  I just posted to let everyone know that someone cares (me).

    I've got nothing new to report.  Hair looks like it's getting longer but is pretty unattractive lol.  The parts that are long enough to do more than lie against my head seem to stick out in all different directions (could be from the wig I suppose)... so far I'm just waiting to AT LEAST look like I did when I buzz cut the hair at start of chemo.  But alas not thick enough yet even for that.  All in all, though, I'm glad to have a hairline!  And to see dark hair on my head instead of skin.

    Lilah

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2010

    OK, ready to post. My big news is that on March 5, I am off to England for two weeks on my own to visit family. I am very excited as I haven't seen any of my family since this whole bc thing began. And I finally feel well enough to take a trip like this.

    Next I had my post chemo 3 month visit with the onc yesterday. When I mentioned going to England he immediatey wrote a prescription for a lymphedema sleeve, even though I have not had any problems. I already have to wear old lady compression stockings as I get swollen ankles when I fly so I'm going to look really cute now.

    And finally, I went topless (sort of) today. My hair is not long, but quite thick - covers my head well.I own a small preschool and we also just started teaching some music classes. I did my toddler and parent class without a hat on today. Everyone was so nice and it felt great!! I am so proud of my preschool. Here's my website if anyone is interested. www.oasiselc.com

    I am feeling so good - now I have to get going with an exercise plan.

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Gill - What a great day of news for you!   The trip sounds wonderful.  I guess long flights can trigger lymphedema?  Also congrats on going "commando".   I checked out your website and you have reason to be proud!   I noticed you are in Moscow, ID.   My parents were both born and raised in Idaho and my father got his undergraduate degree from U of Idaho in Moscow.  Small world!

    Is everybody checking out this aspirin news?   Seems impossible such a common drug could have such a large impact, but then aspirin is sort of a miracle.

     Patty

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2010
    Hey Patty - I went to graduate school at UI and my husband teaches in the college of engineering there. We have been here almost 24 years. We don't quite feel like locals yet thoughWink Where abouts in Idaho are your parents from?
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  • NavyMom
    NavyMom Member Posts: 1,099
    edited February 2010

    Good morning gals.  I have been reading/writing on many threads here at BCO.  But my August chemo thread feels most like home.  Just wanted to give you an update.  I will be going for my exchange surgery on March 11 (port is coming out too).  My hair is about 1/2 or 3/4 inch long and seems to change color depending what kind of lighting I am in. I am still wearing mostly scarves but I will wear my wig when going out to dinner or a special occasion.  I had my eyebrows shaped yesterday.  What a difference!  I had a ton of eyebrow on the right and a small amount on the left.  She did a great job at evening things out.  I am back at the gym4 or 5 times a week.  I have yet to lose an ounce of my 22 lb chemo wt but mentally feel better after a good work out.

    I finally got around to getting a picture on my avatar.  Not sure if that is the correct techno language but anyway........it was taken a month before my son left for navy boot camp.(Dec2008)  He is still in jacksonville and finishes his class on March9.  He should stay in jax for the next 2 years but can also be deployed at any minute.  One never really knows what the military will do next.  His wife is doing well and the baby is a boy and is due on May7th.

    That is my life in a nut shell.  I'm so fortunate to have found this  site.......thanks for always being here.

    Navy

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited February 2010

    Good morning everyone! I was gonna ask this question the other day but didn't, since I read Navy's post I thought I would ask. Am I the only one whos Onc. told them to leave the port in for a year?? I am TN and I know that has something to do with it since it's aggressive and tends to come back in the first couple of years, if it's going to come back. But I can't help but notice some other TN's in our group have had their ports out. She (my Onc) told me she would have it out if I insisted, but would rather wait.And of course I would rather have it out...{{{HUGS}}} Donna

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  • buccaneersdj
    buccaneersdj Member Posts: 241
    edited February 2010

    I wonder if it has something to do with mastectomy vs lumpectomy? I had a lumpectomy with TAC x6 every 3 weeks followed with 28 rads and 7 boost. Currently on nothing!

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Donna - I was initially told my port would be in for sometime because I needed to be deemed "cancer free" first, then the onc and surgeon changed their minds and took it out.  Not sure what changed their minds or if in the rush of things communication wasn't clear.  I had a Bi-Lat MX, maybe that's it - not sure. 

    Navy - So glad to hear from you and to hear that all is going well - love the picture.  Our hair sounds to be about the same length - mine is getting really thick and starting to get really wavy in the back.  Whoo Hoo..... on the surgery.  I'm sure you're ready to get it over with.

    Gill - Glad to hear you're getting to visit family and get some vacation time in. I have heard that when you fly it can really cause swelling in the arm, even for people w/o Lymphedema.  Not all dr's listen as well as yours, wonderful that he gave you the sleeve.

    Patty - I've read a little on the Asprin news, but....... I've been so tired when I get home that I fall asleep before I have a chance to jump online.  Guess the radiation fatigue is hitting.

    Lilah - Love ya'.................. thanks for the bump.

    Hope everyone has a great day! 

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2010

    Donna - I discussed my port with the onc yesterday and he said its up to me. I can get it out or keep it. Just have to go in and get it flushed once a month if I keep it. I am also TN and haven't decided. So I had it flushed yesterday and so am ok for another month. I joked with the onc nurses that at least I get to see them once a month if I keep it!!! I know some people have them in for years and all seems fine. Mine doesn't bother me in the slightest so that doesn't help me decide.

    Good to hear from everyone on this thread. I know we're all "busy" on other threads and now getting on with our lives.

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Donna -  The chemo nurses suggested I keep my port in for a while...which seemed pretty "downside" advice to me!   I'm the more common type of BC and had a lumpectomy.   I actually haven't discussed it with my Onc, but I finished chemo only 2 1/2 weeks ago.   I would really like to have the thing gone before summer since it is very clearly visible on my left chest. 

    Gill - My parents were born and raised in Boise.   I was actually born in Boise myself, but haven't lived in Idaho since I was 2.   So you've been there much longer than me.

    Navy - Good to hear from you!  Congrats on the hair.   Mine is getting thicker and curlier...it is quite a sight in the morning.  I can actually comb it now, but it doesn't take long because it is still really really short.  I'm so jealous of your eyebrow shaping!   You must be excited for your new grandchild's arrival in May!

    I did something really bad today.   FORGOT my rad appointment!   It was only for port films and not a TX, but....my bad.   They rescheduled the films for tomorrow and I start 28 TXs on Monday.  Better puts notes to myself everywhere!

    Patty

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Patty - Funny you said you missed your appt toay.  I was close............I was driving home today, sun was shining and I started heading home rather than the hospital.  Luckily I don't live far and was able to get back on track as soon as I realized what I was doing.  And........ I've been going everyday for three weeks now.  Guess our minds get to wandering..............  I live with post-it's, now more than ever.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Donna -- my ONC said my port will come out when I'm done with Herceptin (which won't be till next September) because leaving it in means going to get it flushed once every three weeks and the risk of it getting clogged, etc.  But I am not TN so that may be the difference.  It may just be that every doctor is different.

    Patty -- I DID see the news about aspirin.  Ironically, before all these surgeries, I was taking one baby aspirin a day for my heart.  Had to stop because aspirin is counterproductive when it comes to healing after surgery.   I will resume once I have my exchange and lift/reduction in May.  That said, from what I've read the study found that the baby aspirin reduced recurrence in HORMONE-based breast cancer (which does not apply to me).  Sounds like something that can't hurt and COULD help those of you with ER or PR positive BC.

    Navymom -- woo hoo on the upcoming exchange and port removal!  YEAH!  Nice picture.

    Gilly -- How liberating to go topless!  I am not ready yet -- but hair seems to be growing!

    Jen -- Mwah! back at ya :) 

    Lilah

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  • NavyMom
    NavyMom Member Posts: 1,099
    edited February 2010

    Hi everybody!  Regarding getting my port out.  I got the feeling that my Onc would rather me leave it in too,  but it is so visible and at the moment I am cancer free.   So I want it out.  I want to get back to feeling alive.  I want my body back under my control.  If my cancer comes back I will deal with it then.  BC has tried to take so much away from me (all of us)  I want to live in the moment.  tomorrow is not written yet............

    And I hated going back to the chemo center to get it flushed.  Made me nauseated just being in that same big room.

    Have a good night everyone.  I am leaving for the sunshine state in the morning......going to a beach wedding.  Should be fun!

    Navy

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Navymom -- I would do the same if I had to choose.  As it is, my ONC says as soon as I'm done getting my Herceptin, the port comes OUT -- YEAH BABY.  You are right: you are cancer free and god forbid that changes you can cross that bridge if you have to.

    Lilah

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  • YoYo44
    YoYo44 Member Posts: 203
    edited February 2010

    Hi Ladies,

    Glad to see all the good news.

    Gilly, have a great trip, sounds wonderful.

    Navy and Donna, so good to hear from you both and that you are doing well.  It really has been great to be able to come here for support and understanding.  Donna, you still look beautiful without the hair with those big blue eyes.  Have faith, soon you will be spening all that hair dresser money again!  I chuckle every now and then at the "money I am saving" by not having to cut my hair and go in for highlights!!  Is that not yin and yang.  Heeheehee.

    I am doing well actually.  I am really finding this round of chemo way easier than the Taxol.  Pretty ill the first day or so but then steady improvement and pretty good energy wise.  I started work Monday and that is great-I get to be well the hours I work.  I will work almost exclusively from home for now so that makes it easier-although more boring.  Yin and yang again?  I go for #3 next Thursday.  Woohoo.  I dread the nausea but just getting through is great.

    I got jolted out of my happy place a little yesterday but am back on track again.  I saw the rad onc and the word is 5 1/2 weeks, boob and axilla.  Boohoo!  Since the tumour and tumour bed were so large (4 cm and 10 cm respectively), had small margin (1 mm) and 6/8 nodes pos it would require the breast being irradiated as well as the lymph nodes above the ones taken.  I have accepted it now but it is always a little scary when they tell you the extent and significance of the BC.  I will start 4-6 weeks after the last chemo and will go for the set up 2 weeks after chemo.  At least that will be the last step before reconstruction.  So it continues!  At least I now know what the plan consists of.

    So onwards!  Have a great weekend ladies-we are nearing the end, be strong!!

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    YoYo - I'm so glad that FEC is going well for you.  The end is in sight!  Not great news on the rads, but it sounds like the right thing to do.   I'm not looking forward to my rads, which start Monday, but we might as well blast this beast with everything we've got.

    I'm finding the whole rads process very mysterious.   Tribal-like markings, invisible rays...it's bafflling to me.   Chemo seemed much more understandable and the staff was so attentive and helpful in explaining things and helping with SEs.   With rads it seems you just have to lie still, pray they know what they are doing and hope that big machine doesn't fall on you.  Not really my style!

    I hope everyone has a great weekend!

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty -- Ugh the rads do sound sort of tribal/barbaric.  My heart goes out to you (and all) who have had to deal with this (or have yet to). 

    YoYo -- Yay for minimal SEs!  How many more to go now?  (It seems to me it wasn't that many this time around).  Sorry to hear you need rads but it is a godsend, really, to have this option available to you to fight the BC.  You will prevail and beat BC in the butt!

    Lilah

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  • gillyone
    gillyone Member Posts: 1,727
    edited February 2010

    Glad to hear chemo is going well Yoyo. Don't worry about the rads. You will get through it. I know everyone is different, but I just breezed through rads. My skin held up beautifully, and I was concerned being fair skinned with freckles. When you get to that point we'll all help you through.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Patty - I just finished my 15th (of 33) rad tx's and it's not as bad as I thought.  Like Gill, I am fair skinned and freckles.  My skin is just starting to get tender and a tinge of pinkish color.  I lather up with fragrance free Lubiderm every morning and evening and use Miaderm after my tx and in the middle of the day.   I just started experiencing fatigue this past week - which I'm not crazy about, but so far I'm handling it okay.  My onc was also telling/reminding me to be sure to wear loose clothing, which I'm doing.  He said even though my skin looks good right now he said the less rubbing against the skin will cause less irritation.  

    Yo - glad to hear chemo is going well and you're able to work even if it is from home.

    Navy - hope you have a great time at the beach wedding - sounds beautiful.

    Gill/Lilah - hope all is continuing to go well.

    Hope everyone has a great day.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Jenn -- so far so good!  :)

    Gilly -- have a fab trip!

    Everyone: hugs!

    Lilah

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  • Kim09
    Kim09 Member Posts: 100
    edited February 2010

    Well I took a big step forward today.  I finally bowed to reality and threw out all my old bras since I will not need them anymore.  I have been saying I would do that starting back in December but today is when I finally did it.  Not sure why it took me so long to do it.

    I guess I am fnally letting go of the old me.  I just can't bring myself to get my port out.  I think of it as my security blanket.

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  • Marrhea
    Marrhea Member Posts: 21
    edited February 2010

    Hi everyone,

    I haven't posted for quite a few months, but do read all your posts every day. Wow, what amazing ladies you are - going through so much and handling it so well.

    I finished my last chemo in October '09. Have been having my "fill-ups" and this Friday, I will "do the exchange."  I've been singing the "I'm getting perky next Friday" song. All in all, my process has not been a bad one at all. At my 3 month onc checkup, took the Cancer blood test and it came back "Zero," which is the best mark! I've felt like the old me.

    However, these past 2 weeks, my energy level has dropped. I did call my onc office, and was told by one of the wonderful nurses that chemo can stay in your system for a year or more. She said my feeling were normal, but if they continue to call again. So, I'm asking all you amazing women if any if this has happened to you. You seem to be the "real" experts on all situations because you're the ones that are going through this - not doctors or nurses. So, if any of you have had this feeling or know of any who have had it, please let me know.

    Thanks for your help. 

    Thought I should probably add a few things. My internist just started me back on Evista and Alendronate for Osteo. I'm also taking Lisinopril as I have Mitral Valve Prolapse and my "regurgitation" is up (have had this for years!). So, do I call my Internist, cardiologist, oncologist, breast doctor?  It's funny, but I'm so confused! 

    Again, thanks for helping.

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  • jenn3
    jenn3 Member Posts: 3,316
    edited February 2010

    Good afternoon- this morning DH and I went out for breakfast, then went to see the movie Valentines Day.  Came home walked the dogs, then just watched some television, laundry, a little house work, but for the most part and easy afternoon.  My skin from radiation is starting to turn a little pink and somewhat tender, but not painful.  Each time I go to radiation I think of it as one step closer to being done.

    Marrhea - The medications you're taking could be causing the fatigue too........A friend of mine at work had flu like symptoms on a medication she was given for Osteo - they had to switch her medication.  And.......... my Mom had an overall tired feeling on some mediation they gave her for her heart.  It could be one or more than one of the medications you're taking.  If it were me I'd probably look up all of the SE's of the medications - then call the internist and/or the cardiologist. I just finished chemo in Dec and am doing radiation, so I am experiencing fatigue, but I'm still in treatment.  And............I've heard chemo SE's can linger too.  Good luck and I hope you feel better. 

    Kim - I hear ya' on getting rid of the bras, it does feel like a big step.  I really had a hard time letting go.  It felt weird to throw out my bras.  And..........I literally had just bought some (expensive) bras 2 weeks before my dx and subsequent surgery.  That was soooooo hard.  I gave the good ones to my sister and the rest to Good Will. 

    Hope everyone had a good day and has a happy Monday.

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Marrhea -- I may sound stupid, but what is the "cancer blood test"???  I don't think I've ever taken such a test!  But I like the sound of it :)

    Kim -- yeah I'm going to go through my old bras when all is said and done (but it isn't done yet so we'll see what fits and what doesn't once I have my final exchange).

    Lilah

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  • MaineCoonKitty
    MaineCoonKitty Member Posts: 125
    edited February 2010

    I can identify with throwing out all the old bras.  I wore Bali underwires for years to support my DD's.  God....they were uncomfortable!  Now, thanks to a mastectomy and a breast reduction on the "good' side, I'm a small B and never have to wear another uncomfortable bra again.  I can go braless around the house if I want to, and usually just wear a stretchy sports bra the rest of the time, even to work.  I would have had a breast reduction years ago if I had known.  While I'd never wish breast cancer on anyone, not everything that  comes of having it is all bad!

    Free at lst...free at last...thank God Almighty....free at last!  Laughing

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  • YoYo44
    YoYo44 Member Posts: 203
    edited February 2010

    Thanks for the support ladies. Intellectually I know it is a great tool and I am glad to get it, need to nail the lid down on this bc!!  But as you all know, emotionally it sometimes takes some time to catch up. 

    Your reassurancs are greatly appreciated Jenn and Gilly.  Good luck Jenn, hope your skin stabilises and doesn't get worse.

    Patty, thanks for the laugh.  I will make sure I check out the supports of the machine so I will know it is safe!  Heeheehee. I guess the tribal marking make sense since we are afterall Amazons!

    It's funny about the bras, throwing them out was when it became very real for me.  I did this before my surgery since all my bra were underwire anyway and you are not supposed to wear them with implants, and who knows what size I would be anyway.  I also decided that I would actually splurge and buy pretty ones only afterwards since support would not be an issue.  It felt very final, but was not as sad as I expected.  Funny the things we have to do along our "Journey".  It kind of reminds me of that Survivor episode towards the end when they remember all their team mates who are gone.

    Back to work, have a great day ladies!

    Yo

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  • msmpatty
    msmpatty Member Posts: 818
    edited February 2010

    Glad to know you guys have also had some mixed feelings about what to do with the pre-BC bras.   I have drawer full and everytime I look at them I close the drawer quickly and do a Scarlett O'Hara...I'll think about tomorrow.  I didn't have an MX or reconstruction, but my lumpectomy was pretty extensive and I have to have some padding now to even me out.  The pretty, lacey pre-BC bras just won't work anymore.

    I agree Yo,  I never thought I'd be saddened by having to clear out the bra drawer.  Maybe I'll have a ceremony and bury them under a rose bush in the garden. HA!

    Patty

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  • Lilah
    Lilah Member Posts: 4,898
    edited February 2010

    Patty -- have you checked out the inserts that Victoria's Secret sells?  I have read about them somewhere here on BCO... and I gather they are meant to be used to make a girl a size bigger... but some creative women have been using just one insert (they are made of memory gel and I gather are quite comfy) to even themselves out.  Just a thought before you toss the lacy numbers :)

    Lilah

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  • weety
    weety Member Posts: 1,163
    edited February 2010

    Lilah, please tell me more about these inserts.  I am tiny uptop (barely an A cup) so can't really even use the prosthesis they gave me (IT"S BIGGER THAN I WAS!) so these inserts might be a way to balance out my bras.  I usually just wear a regular bra "empty" anyways and unless someone was to push on it and make the form go in, no one can tell it's empty.  But the inserts might work.  Do they sell they separately or as part of a bra (I remember having these back in my jr high & high school years--are they similar?)    And most importantly, do they come in small sizes?

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