December 2012 chemo group

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  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Scar yola - u might want to get a 2nd opinion ! Regarding age I think they feel chemo is worth it to boost your odds . if u r are on the young side - they figure u are strong and can endure it . If you we much older they might not recommend it . I was told by 3 dr's the the hormone blocking drugs ( tamoxafen etc ) would be the most preventative for our type of bc - hormone sensitive - the chemo is preventative too but not nearly as much as rhe hormone blocking pills . As another survivor told me - its a numbers game with chemo - your just trying to lower your chances of recurrence as much as u can !

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    I had a .5 mm (that's point 5) micromet in one of three nodes.  The BS suggests either an ALND or radiation following chemo.  I got a second opinion from a second BS and she did some calling around/emailing around with some other doctors around the country and the conclusion was - it's inconclusive.  One doctor from Sloan Kettering who is a node expert (?) said "why would she need an ALND for a .5 mm node?" - another doctor, who is an expert at the kind of ALND procedure my BS does says "of course she should have an ALND." 

    The last time I talked to my BS he mentioned doing the ALND when I have the exchange surgery (following chemo).  OTOH, my MO has me set up for a consult with the radiation oncologist at his center for January 7th.  

    I'm having chemo starting tomorrow (yikes, Yikes, YIKES) and then Herceptin for the remainder of the year... 

    I was 62% positive on estrogen, much lower on progesterone (it doesn't really matter with progesterone because they don't have anything to target progesterone) and my FISH score for Her2+ was over 7.  

    All that said, I've known I was having chemo since my very first appointment with the BS; first and foremost because my tumor size (2.5 cm) and the high grade cells.  

    I remember the first day I met with the radiologist who gave me the results of my biopsy.  She gave me the idea that if I had a BMX I could avoid chemo and radiation and life would be a breeze!  Ha ha.  But no.  

    Re: waking up with nightmares - a few nights ago I had a return to what I call the night terrors.  I slept in the bed versus the recliner and my husband had to keep waking me up from my screaming dreams.  I wish there was a way to wake up all happy, Little Mary Sunshine but since having cancer, I'll be darned if I've found a way to do it!  My husband, who had a very rare autoimmune disorder five years ago, has apparently been blessed with an inordinate amount of serotonin.  He always wakes up very cheerful and he says it's because he's just happy to be alive.

    I'm thinking most of us will get to that point as well.  At least that's what I hope for all of us! 

  • sophiafred78
    sophiafred78 Member Posts: 91
    edited January 2013

    Hello ladies :) I'm back from my parents house (I was so spoiled that I didn't want to come home) and catching up with your posts.

    Day 6 from my first AC. The worst moment so far has been the infusion itself, the anti nausea caused some kind of itchy feeling all over my body and the first med (cytoxan, I think) gave me a headache. IV was painfull, so I might get the port for next round. Only had quizzyness the first night, went away with medication, and I feel tired but it's manageable.

    On the node/chemo "theme", I'm in a very similar situation since I'm 34, one micro met (<0.5mm) and didn't had oncotype as it "wasn't needed, you're having chemo for sure because of your age". Like I said before, they also did full axillary dissection for the same reason. I agreed with chemo, the ALND I'm not so sure since we're talking arm problems and physical therapy maybe for life (I'm allready doing it). I had something unusual, I had swollen retroperitoneal lymph nodes, that's why I had a pet scan, but showed nothing. I might post a new thread asking people about this retro-nodes, since I'm curious about it.

  • kiwikid
    kiwikid Member Posts: 204
    edited January 2013

    I had a .6mm micromet in my sentinel node and I've just started 4rounds of AC. The tumor was 1.8cm and my ki67 was 18%. My MO told me it was the ki67 that pushed me into chemo.

    Feeling very jet lagged on day 4 ;)

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    I just had my appointment with my RO to see if I should do it.  She said that I will do rads bc 1) of my age 2) I had 1 mammary node positive 3) and that evidence has shown it to be effective in reducing  recurrence for TN patients.  I would do rads any day over this chemo shit.  I am considering after rads removing my other breast, ovaries and fallopian tubes and deal with reconstruction in 2014 once my body and mind has had a good amount of time to recover.

  • Grace533
    Grace533 Member Posts: 18
    edited January 2013

    I need some help. I had first chemo last thurs and got diarrhea mon day until tues about 3 in afternoon. I took a walk and ate boiled chicken , potatoes and felt like Inwas over it. I have been following bland diet drinking etc the whole time. Thought it was over but came back this morning around 5 . I just ate a yogurt, banana tea etc. I will call my onc this morning but I was wondering if anyone' s onc gave you something that worked . I can't keep on this diarrhea roller coaster

  • mfml
    mfml Member Posts: 77
    edited January 2013

    Hi Gwen- I have not gotten diahrea - but my doctor told me to take immodium AD if I did - it is my box of emergency meds but I haven't had to take it yet.  Good luck - I hope you get some relief - it must be really annoying to have it come and go unexpectedly like that.

    I go for round three of AC in a few hours... I hope its no worse than round 2.  This puts me half way done with the AC part - I feel like I can see the finish line on this one...

    Hope all are OK-ish today..

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    Grace533 - I have had some diarrhea, my doctor told me to take Imodium AD if I did - no more than a certain amount in a day.  They want you keeping that food/liquids down so you won't get dehydrated.  Happened to me and it wasn't pretty.

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Oh, decisions, decisions. I too am in the same situation of trying to decide if I want to do the full ALND with rads, or rads only, or nothing after chemo. I had two tumors in the lymph nodes under my arm, 1 is 2.2 x 1.9cm and the other is 2.1 x 1.2cm. BS wants to do full axillary dissection and then rads. Right now I just can't bring myself to do the full ALND even though my BS recommends it and is highly regarded by other docs. The thought of living with LE is just not something I want to do. I know LE is not guaranteed, but I am the kind of person who always winds with a cut, bruise, burn or something on my hand or forearm at least once a month. I have had stiches in my hand 3 times in the last 5 years for various cuts that happened in the kitchen! And each one of those incidents brings with it a very high likelyhood of setting off LE.

    I have another appt with BS after tx 4, then an MRI. If the tumors are no longer detectable on the MRI I will have to find out why it would be necessary to take out all the nodes. I also have an appt with PS to get his opinion on whether I will be able able to keep my implant if I have either ALND or rads.  I have had these foobs for 12 years now and kind of like having them around.

    Lee - It seems as though there is no clear concensus among docs about the ALND in every case. It used to be the "standard of care" and always done, but it seems as though more recent studies (referenced on the triple positive thread) are showing that it is not always necessary. On another note, I hope your chemo goes without any complications today.

    Grace - Imodium should help with your diarrhea. I had to use it after my first tx and it really helped. You may have to take it more than once a day and for a couple days in a row, but it should help.

  • Grace533
    Grace533 Member Posts: 18
    edited January 2013

    Is the Imodium going to turn all of this diarrhea into constipation or because it is soon second week i should be all right?

  • mfml
    mfml Member Posts: 77
    edited January 2013

    Ooops - sorry Grace - I was writing to you about immodium when I wrote Gwen...  chemo brain - typed the G and the hands went without the brain.  I do hope it helps you. 

    Bren - good luck with your decisions.  It is so hard for me to navigate and evaluate the choices we have...  I found reconstruction options overwhelming at the time - and it only gets more difficult.  I respect that the doctors give us information and then let us make some choices - but I find it extremely difficult - especially under the circumstances.  I always ask my doctor for stats - but often there are none for the questions I have.  Your deciscion sounds especially difficult to make...  I wish you luck with that.

    Good luck today Lee.  I'll be doing tx 3 today - just hang in there - you can come back here for support on any of your SE's - and by the sounds of it no one gets ALL of them - just some.

    Take care-

    M

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Grace - if you don't get the diarrhea under control it will probably just continue. My experience was that once I got the big D to stop then things went back to normal.

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Thanks for the good luck wishes Bren58 and mfml.  And mfml, the same back to you on #3 today.  Halfway through sounds so divine! 

    I haven't had "chemo class" yet and don't have an emergency meds stash (of any kind).  I guess I'll get the low-down today when I go.  

    I'm still planning on painting my nails a dark color.

    Bren58, are you icing your nails or did you end up not doing that? 

    ETA:  Just looked at my detailed biopsy report.  My Ki67 was 40% so I guess it's been chemo, chemo, chemo for me from every angle from the beginning.  

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Bren58, my BS does something called Axillary Reverse Mapping (copied/pasted --->) to identify and protect arm lymphatic drainage during lymph node surgery to reduce or prevent lymphedema.  I thought there was a video about it out there but I can't find it.  Just emailed my husband to see if he remembers anything about it.  If he does, I'll PM you a link to the video. 

    Note: I haven't had it done yet but if I do - he'll be the one doing it. 

  • Tinah
    Tinah Member Posts: 11
    edited January 2013

    Gwen I know that it is different with everyone, but i was told by my surgeon I could do a lumpectomy and have radiation or a mastectomy with chemo.

  • Sandra60
    Sandra60 Member Posts: 201
    edited January 2013

    Good Morning to my special warrior girlfriends !

    day 7 for me now --

    Wow I feel quite a bit better the am - did not wake up with that agitated feeling and did not have any nightmares upon waking - much improved start to the day !!! Got the pop corn shell out of my gum too ( that movie and popcorn was a brilliant idea for Sunday - NOT !! )

    Grace I think also u need to to the Imodium and get it under control - one step at a time is what comes to mind !

    Bren and Lee and mfml - many food thoughts and prayers going your way today - we will all be helping u through all of this !

    Tinah - I am curious since your stats Are similar to mine - are u doing the rads in addition to the chemo ?

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Sandra, so happy to hear you're feeling better this morning!  Also, good news on the popcorn shell.  Stuff like that can drive me crazy.  Kind of reminds me of the princess and the pea in a roundabout way.  

    I have Imodium on my list to ask the oncologist about today.  Several years ago I had an intestinal bug and it was the only product that finally got me straightened out.  That reminds me - I need to add the probiotic I'm taking to my list to ask the oncologist about.

  • powermom
    powermom Member Posts: 195
    edited January 2013

    LeeA - Good luck with your first chemo today.  Hope yours is as uneventful as my first two have been.  Really glad that you have gotten past the obstacles that have come up for you and that you can now get on with the kickin' cancer program!

  • LeeA
    LeeA Member Posts: 1,660
    edited January 2013

    Thanks, powermom!  We're on the same cocktail (or at least that's what I've been told thus far - ( I have already had one solo Herceptin) so I would be thrilled to be able to use the word uneventful in a few weeks time!

    Have a great day!

  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2013

    Sandra, I asked my onc about the Prilosec for more than 14 days (because it says on the box do not take more than 14 days in a row) and she said to continue taking it.  I do have to say this 2nd go around it helped immensely with the heartburn and overall feeling of GI fullness!  I started it about 3 days before my 2nd chemo and am taking it daily now until chemo is done.  I too had the feeling of being agitated and restless, my MO said it was from the steroids.  She cut back my dose to help, maybe yours can do the same?

    LeeA, I didn't know you start chemo today!  Best wishes.  I'm sure you have yourself fully prepared knowing you :)  All I can say is rest, rest, rest for the next few days.  I think sleeping 14+ hours a day on Days 2,3,4 helped me rebound much quicker than the first treatment.  And drink tons of water.  I asked my MO about icing my nails and she said don't bother.  She said Taxol is more likely to cause nail loss than taxotere (although I know Lago in our Triple+ thread got it on taxotere), but I have not iced and after 2 tx my nails are perfectly normal. 

    mfml, good luck with tx3 today!

    Jenjen, I know you've had it rough with chemo.  Hang in there, you will get through this stronger than ever!  I thought too about removing my ovaries being ER+, but with us being young that has a lot of disadvantages.  Estrogen is good for so much in our bodies, it's hard to know what the right decision is regarding having the ovaries removed.  Obviously it's highly personal, but just research as much as possible about it!  You and I are both years away from menopause. 

    For those asking about diarrhea, I used Immodium once or twice to get it under control.  It didn't make me constipated at all with just a couple doses.

    7 days out from tx #2 and I feel great.  I go in for my weekly Herceptin today.  Got it scheduled for the afternoon so I can go home and nap afterward.  The first few infusions of it have gotten me very sleepy so coming back to work was difficult.

    Have a blessed day everyone!!!  xoxo

  • Tinah
    Tinah Member Posts: 11
    edited January 2013

    Sandra, no rads just chemo. After chemo I will have a double mastectomy.

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    steiner18 - for me it's a no brainer to remove my ovaries/tubes...I am BRCA1+ so my chances of getting ovarian cancer is 60%, with triple negative ontop of that...they are so outta here.   I have my babies and don't want more.  I know it will be difficult but my whole life became difficult and complicated on 10/30.  I really do think my 1/8 infusion will go better.  I know I need more support, they are going to give me fluids for the 3 days after my infusion, I kinda know what I was able to eat those 7 days nad I have stronger pain meds lined up.  What I don't have is a good sleeping pill...that avitan (sp) doesn't do crap for me.  Thank you for the chemo pump up and remember what hell it was for me :)

    I go back to work on the 14th, I'm looking forward to it so I have something to occupy my time vs thinking about stupid freaking cancer/treatments all day long.  I will be working from home FT and will get to "cherry pick" assignments.  I am stepping down from my management role, it just wouldn't be fair to my team. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2013

    Day 6 after 2nd round of AC. I think this has been the worst day of either treatment. I'm in chemo fog. My sense of smell is heightened, which is gross at times, but my tastebuds are dead. When I stand for a moment or 2, I feel a bit faint.

    I had bra & form fitting appointment this morning. I had to sit down between each fitting. Then I met with a social worker at the Breast Center. We went back to her office because the smell was so overbearing in the lobby. I thought they were using chemicals to get mold off the walls or something. It was the smell of Mexican food from the cafe. My smeller just is on overdrive. Lol. YUCK!!!



    I think it's time for nap.



    I hope you girls are having a day with little or no SEs.



    Blessings

    Paula

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    Sandra - I am glad you are finally feeling better.

    Paula - I am so sorry that you are having such a bad day. It's awful to have to go out on a day that you are nor feeling well. I do hope that you can rest when you get home and that tomorrow will be better.

    Lee - I am icing my nails. We haul the cooler in with us everytime! I figure it is not that big of a deal and if it helps then I am all for it.

    mfml - hope your tx goes well today.

    jenjen -  it sounds like you are better prepared for the next tx. I hope it is easier for you.

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    I ice my finger nails when the taxotere is going down - they actually make you, I didn't know of it until she brought the ice soakers over.  I don't do my toe nails thought....do you Bren58?

  • Bren58
    Bren58 Member Posts: 1,048
    edited January 2013

    I do both fingers and toes. I wish my center had the ice soakers so I didn't have to haul everything with me!

  • jenjenl
    jenjenl Member Posts: 948
    edited January 2013

    Oh geez i couldn't imagine my finger and toe nails soaking in ice water for an hour.  The fingers were bad enough and they keep bringing more ice as it melts....I'm gonna ask about the toes this upcoming treatment.

  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2013

    Jenjen, well yes you must get rid of ovaries being BRCA+. Maybe you can get an appt with an endocrinologist who can help you with balancing hormone levels and deal with the sudden loss of estrogen. My mom did that after she had a complete hysterectomy, she was young too when it was done...in her 30s. I'm glad they are continuing with fluids for your next tx. I'll be thinking about you next week on the 8th ((hugs))

    BTW, sorry to hear about the change in work. For me that would be hard to step down, I'm a very driven person and it sounds like you're the same. But I personally look at these valleys in life sometimes as blessings in disguise, meaning God has something better in store. I hope that turns out to be the case for you! I think starting back will be good, make you feel normal again :)

  • beckstar18
    beckstar18 Member Posts: 253
    edited January 2013

    am I the only person NOT icing my nails?? I asked my MO and she said it wasn't really necessary so I haven't done it.



    Paula, I hope you start feeling better soon.

  • Runnergirl2013
    Runnergirl2013 Member Posts: 83
    edited January 2013

    Hi everyone - I am been MIA for a few days.  days 3-5 were hard for me - achy, tired, and just down (after coming off the steroids).  I am feeling good since Monday - have worked out each day and am working today!  I feel like I came out of this chemo more quickly but coming off those steroids plays funky tricks with my emotions. 

    Steiner- I don't ice my nails either. My MO says that it doesn't pay ----- hmmmm I wonder if I should????

    Hope everyone is well...I am off to dinner with my dear boyfriend....i have been couped up way to long!

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