Sept 2012 chemo

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  • jojo2373
    jojo2373 Member Posts: 662
    edited December 2012

    Follow up to Amy's questions, did anyone get to keep your nipples? I have been reading about the nipple sparing surgery but not sure who are the candidates for that?



    Trying to prepare all my questions to meet with the PS on Friday. Anything anyone would have asked they didn't?



    No SE wishes for all.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Jojo-

    I didn't get that choice because I had a reduction prior to my dx. I wish I could have but my PS said it was too high risk :(

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  • butterfly14
    butterfly14 Member Posts: 253
    edited December 2012

    jojo, my breast surgeon and PS did not recommend the nipple sparing for the following reasons, higher recurrence rate, the placement of the nipples could be off, not centered where you want them and finally, you will lose sensitivity in them anyway. My PS showed me pictures of the reconstructed nipples, and they looked like "real" nipples. Ask to see pictures, my PS showed pictures of all stages of reconstruction. Hope that helps.

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  • QueenKong
    QueenKong Member Posts: 154
    edited December 2012

    Hi, 

    Sorry I have been MIA. I was so sick for a while, I gave up posting. I'm starting to feel better finally.

    After my 5th chemo treatment which was changed from Taxol to Abraxane, I was sick (sinus infection, laryngitis, etc.) My symptoms weren't addressed by the new "team" of PA's that had taken over when my oncologist left Roswell. I ended up hospitalized twice. Once at the local hospital and the second time I was admited for 8 days to Roswell with pneumonia. Pneumonia is worse than chemo. My chemo is now delayed because of it as I am still recovering. 

    The good news is that I had an MRI and my tumor has dissipated to the point that it is no longer visible in the MRI imaging or palatable.

    I fled Roswell as soon as I could and am now in NYC. I am going to have surgery at Weill Cornell on Friday and depending on the pathology of my tumor, we'll decide what will happen next. Likely, back for more chemo and then radation. They were going to see what came out of the Oncology convention in San Antonio last week. 

    I'm still weakish, but getting stronger everyday.  

    Does anyone have any tips or suggestion for preparing for this surgery?

    I'm going to start reading so I can catch up with you all.

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  • aic
    aic Member Posts: 417
    edited December 2012

    Mariposa, stay strong!  I agree with whomever said trust your doctors.  I can agree with the eye spasms.  I can handle a twitch here and there, but sometimes it feels like someone is tugging at my eyelid.  Grrrr!  Mine have just started and I still have two more taxotere to go.  Very annoying.  Praying everyone is on the mend soon.  I am already dreading number 5 on Monday and hoping I am feeling somewhat myself on Christmas.

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  • QueenKong
    QueenKong Member Posts: 154
    edited December 2012

    Oh gosh, some of you are having a rough time of it. Mariposa with the neuropathy and the unsupportive husbands. I wish I could give everyone a gentle hug. I'm fearful of strong hugs, they squeeze my port. At least some are growing hair. I'm as bald as ever and I too wonder where the rest like me are. I can't deal with wigs, maybe because the one they gave me makes me look like a soccer mom and I get these crazy hot flashes where I need to rip everything off and the wig is so annoying & itchy so I go baldy, taking a hat off is easier. I still haven't unpacked from moving, I have piles of laundry. My spouse I don't want to even comment on because I know I will say something mean. 

    Any one else had pneumonia?

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  • butterfly14
    butterfly14 Member Posts: 253
    edited December 2012

    Queenkong - I have had a reoccurring fever, cough, neuropathy, extreme bone and joint pain, and now a low red blood count that requires a transfusion, but not pneumonia. Taxol has been horrible, all of my problems started with the fist dose of taxol.

    Glad you are back in NYC, and out of the hospital. Are you doing lumpectomy or mastectomy? Good luck.

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  • bearcub
    bearcub Member Posts: 485
    edited December 2012

    Queen kong good luck with your surgery and good news about the tumor reduction. Sorry to hear you were so sick.



    JoJo I hope your meeting goes well, and all your questions make your decision easier.



    Mariposa and Butterfly I am sorry your spouses are not more supportive. I think I you really learn what people are really about when an illness hits the family. (Hugs).



    Mariposa you did great, no two people are the same, your body did not require the full course of meds...it was hit pretty hard with what you got. In the big percentage of it all you still have got a good dose of meds. My last two doses were 75 percent as my body couldn't tolerate 100 percent and I am okay with that.



    I also feel like I am the only person wearing a scarf, I don't do wigs as I find the one I have is unbearable and I think it screams wig!!..even at the cancer clinic lots of patients have hair, some wear wigs. I have only seen about 3 others with scarfs or bald. I am a month out today from last chemo and my hair is about 1/4 to 1/2 inch. The color looks the same, my hair goes white rather than gray. The only problem is it is so light it will take forever to cover the bald skin on my scalp.



    I have been somewhat depressed the last few days, I should be feeling great and would be but I was exercising and did something to my hip and have pain going from my hip to my knee...pissed me right off, so sick of being sore and ill. I won't go to my GP as he would just send me for an X-ray....don't need any extra radiation...so this will take weeks to heal. Then the doctor called yesterday and my last muga scan came back with no data...apparently the computer stopped sending the data and now I have to redo it...Gggrrr. Then the snowblower broke down and had to help DH fix it...my hands are small enough to get into places his can't....and every time I had to get down on my knees my hip would shoot out pain. Then DH and me got into a bit of a argument. I think sometimes now that chemo is over he thinks everything back to normal. On a positive he felt guilty last night and was being super nice....thanks for letting me vent..it's just been one of those weeks, another positive I was down 2 lbs. today...only 11 to go!.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Butterfly-

    Good luck with the blood stuff. Sorry that u are so sick with taxol!

    Fight-

    I did BMX, I am happy with my decision it's such a tough one!

    Shebab-

    I agree with you!

    Terri-

    Cheers to 2013 it has to be better!!!i so miss my hair too! Good luck with the rash.

    Bear cub

    Congrats in the weight loss!! Vent away!!

    Patricia -

    I start taxol on jan 3. I am with ya!!

    5luv-

    Be careful if u device to go in. There's a lot of stuff going around in there !!

    Amy-

    Thanks for the info on latisse I think I will start it tonight I noticed some eyelashes missing already :(

    Scar-

    I had a reduction so I have both scars I feel so fake!!!

    Marioposa-

    Everyone is right!!!! U got this!!

    Queen-

    Good luck Friday!!

    Toastie-

    I can't look either I hate to see my head! Ughhh

    Hope everyone is doing the best they can today!!

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Marioposa -

    My not so DH sent me roses to work yesterday.... I wish I were do happy but I really feel like its for guilt reasons. Trying to live in the moment but feel like its not going to change ... Ughhh

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  • twinsplus1
    twinsplus1 Member Posts: 43
    edited December 2012

    Amy: I had a BMX with DIEP flap reconstruction on August 6. The scars are amazingly smooth. If I close my eyes and run my hands over my belly and breasts, I can't feel the scars AT ALL! The belly button scar has faded the most. The breast scars are not as faded as the belly button but definitely better than they were a few months ago. The size of the scars are about the size of my now-gone areolas. The right is round and the left is more egg shaped (I hear that's normal on the cancerous side). The abdomen scar is most prominent. However, both my BS and PS have told me that blue eyed, blond haired, fair skinned people's scars take longer to fade.

    I'm not gonna lie, sometimes I forget that I have BC...until I see myself in the mirror after a shower. Seeing the scar from hip to hip, ring around the belly button and two circles where my nipples once were combined with the bald head can be a bit overwhelming at times. I give myself a few minutes to feel sorry for myself and then I get dressed. That always makes me feel better because I now have a flat tummy (something I have wanted since giving birth to my twins - 7lb 4oz and 7lb 10oz and plus 1 weighed 9lb 12oz) and perkier boobies (the left was a D cup and the right a DD - now they're both C's).

    The hair thing still bothers me but it is what it is.

    Hope this helps.

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  • butterfly14
    butterfly14 Member Posts: 253
    edited December 2012

    Thanks dakota!!

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Twins -

    God bless u for raising twins !!

    I can't get over the hair thing either :(

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited December 2012

    Queenkong:  So sorry about the pneumonia!  I have chronic lung issues so I get pneumonia pretty often (five times last year).  What helped me a ton was heating pads.  Do you have the stabbing pains in your chest?  Those are terrible.  Hope you are feeling better super fast.  Sorry you have been having such a hard time too!

    Butterfly:  Good luck tomorrow with the blood transfusions.  It is so hard not to be stressed about everything- so I am not going to tell you not to be stressed.  But maybe you can do something nice for yourself today while you are waiting.  Maybe a good movie?  I have been trying to do positive things since I got my news, which has helped a bit.

    Dakota:  Uggh.  I know what you mean.  My hubby will do a nice thing, but I am still irritated by the other things and can't enjoy them.  I get mad when he doesn't do what I feel is supportive, and when he does do something supportive- I think he feels guilty or has alterior motives.  I guess he can't win.  Hope you are doing okay and can try to enjoy the flowers as best you can.

    I am getting nervous about surgery now.  I was planning on just denying it was going to happen until January, but now that I am done with chemo- it will be happening sooner.  I am feeling so yuck already- bald, gained weight, and now losing my boobs.  Breast cancer is mean.

    Last night I wrote a kind of visualization around the chemo and cancer.  I imagined one of those WWII narrations of a battle where chemo defeated the enemy- there were some losses (my neuropathy) but now the troops are regrouping and getting ready for the next battle (surgery).  It made me feel better. 


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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Mariposa-

    I would enjoy the flowers of I haven't been lied to soooo many times!!!! My daughter told me she would never forgive her father if he divorced me I hate that hanging over my head !!! Trying to hang in there and work on me the thing I can control!!!

    What is ur surgery and what date??

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  • butterfly14
    butterfly14 Member Posts: 253
    edited December 2012

    Mariposa -  Thank you, trying not to stress, and hoping that it will make me feel better.

    When is your surgery? Are you doing a bi lateral mastectomy? I had the surgery before the chemo, and it is not as bad as I had imagined, but you are right, cancer is cruel.

    I hope you are feeling better, and please ask if you have any surgery questions.

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  • Mariposa123
    Mariposa123 Member Posts: 267
    edited December 2012

    Not sure when I will have surgery as of yet.. just know soon.  I have to go get another MRI first.  I am getting my echocardiogram on Tuesday to check my heart.  I am leaning towards a bmx.  My doctor yesterday thought at this point, because the tumor has shrunk so much that I might be able to do a lumpectomy (but I know I don't want that).  My surgeon wanted me to do a UMX, but I dont want to deal with this ever again. 

    I am hoping to do nipple sparing.  We will see.  I will probably have lots of questions after I talk with my surgeon again.  And you ladies are exactly where I will go for the answers!!!  :-)

    Divorce and kids is such a hard thing.  I feel like my kids are already dealing with so much!  My daughter says she is scared we will get a divorce.  I can't tell her it won't happen, because I don't really know.  I just try to tell her that no matter what, her parents love her and she will always be safe and close to both of us.


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  • QueenKong
    QueenKong Member Posts: 154
    edited December 2012

    butterfly14- Those SE's sound awful. I hope the transfusion helps. I haven't had any taxol yet, just the one dose of Abraxane which is similar.When are you done? I am getting a lumpectomy, will not even stay one night. 

    bearcub - Sorry to hear about the hip injury. You are doing so great with the exercise and weight loss. That's a shame about the muga scan. It seems like they would check that before you leave! I don't envy you that snow. Maybe ice the hip?

    Mariposa - pneumonia 5x in one year!!!! omg. How do you get through it. I've been so sick and am still trying to regain my strength. You put the heating pads on your chest? Yes, I have stabbing pain in the center of my chest and along the sides in my ribs. 

    I like that visualization of the troops. I'm nervous and anxious about surgery and it's coming on Friday. I found myself up very late last night searching "how to prepare for breast cancer surgery" and didn't find any real info. I think I need to prepare my mind as there's only so much I can do about my body the short time I have. I need a visualization before they knock me out. I would love to read someone's surgical experience in detail. I think it will help me. 

    Twinplus - Thank you for sharing about your surgery, healing and scars. It's helpful to read a description like that as not many can write and paint such a vivid mental picture of what one goes through with surgery and recovery.

    Dokota - I know what you mean about flowers to make up for guilt. At least it's an effort but still. Flowers are not an eraser of memory. 

    Dealing with family drama on top of going through treatments is not something any of us should have to deal with. It's a time for us to get support and be cared for. Argh! Why can't things be the way they are supposed to be?

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    Went to chemo today and had a conversation with my MO about "being on the fence" toward surgery and told her I want to know statistics for me.... She said after treatment I will be in the 10% for lumpectomy 1% mastectomy for reaccurance of BC but both surgerys have the same survival rate in the end so its a matter of personal choice...

    Dr. K had a very hard time finding my tumor today she even second guessed if she was on the correct breast... I had to laugh cause it would be just weird if she was all over the lefty for that amount of time for no reason lol...

    So at this point I am leaning toward a dbl skin/ns mastectomy I feel that since my cancer is so samll at this point this type of procedure will give me the best looking foobs! I just have a hard time living with thinking about my cancer returning with a lumpectomy I have a very very big family history of cancer  4 of the people had breast cancer 2 were my aunts both on the maternal side and a cousin who passed from it. 2 of the 3 were under 45 (the forth is me). Plus my maturnal grandmother had pancreatic and I hear BC and pancreatic are related.... Not to mention I ended up being stage 3, very aggressive, fast growing cancer and highly hormone feed...

    I was negative for the brca1 & 2 but still I just dont want to live with this question when it is all over "will this be the year it returns?"

    So I speak with 2 PS one on the 27th and one Jan 8th (plus my BS on the 8th as well)if I am a good candidate for the skin/NS I am gonna move forward and BC can kiss my sugar craving ass! lol

    Dakota212..I did my own experiment and applies twice a day and but it on my brows kinda pricey but it was the only hair I had left in the end so it was workth it to me.

    twinspls... Thanks for the info! Just think they will make you new fips(lol) your hair will grow back and you will be one HOT MOMMA! people will be amazed you even had twins...

    Mariposa... so sorry you have to be dealing with all this during such a trying time. But stand tall and walk strong my friend you are a warrior....

    I am on a huge steroid high.... so I am gonna put this energy to good use and bake christmas cookies for my babry girls school party tomorrow... Tis the season!

    Question to all of you: does anyone know if I do the NS/skin spearing surgery will I still need a flap to make a breast mound? guess I could google a little but thought you might have some insite... if I do the dorsi flap is where i will go.

    Much love to all of you 11 down 5 to go! I'm on a roll......

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  • twinsplus1
    twinsplus1 Member Posts: 43
    edited December 2012

    AMY: I love it... "fips!" Actually, I'm seriously considering bypassing the reconstructed fips and going with the 3-D tattoo instead (would they, then, be called "tips?") Have to wait and see my PS's portfolio of 3-D tats and if I don't like hers I'll check and see if Vinnie Myers (http://vinniemyers.com/section/105672_Nipple_Areola_Tattooing.html) accepts my insurance. Heard about him from another board here on BC.ORG (can't remember which one) and his work looks AMAZING.

    The only reason I'm looking into the tat instead of reconstruction is that my PS said that the reconstructed fips will always make me look like I'm cold (LOL). Now that the girls are smaller, I enjoy going braless from time to time...I don't really want to look like I just jumped out of a cold shower!

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  • Cindi74
    Cindi74 Member Posts: 363
    edited December 2012

    Thank you Toastie, 

    Just a bad day dreading today.  It went ok.  4 hours.  Nepogen tomorrow but hubby can give it at home.  We had begun to wonder if I would have ever used the 10 unit prescription.  Bought them covered by insurnce after the first A/C wiped out my white blood cells and the Nuelasta apparently didn't kick in the first week.  Had 5 nepogen  then--

    Trip to and from hospital or cancer center, waits--about 2-3 or more hours each time.  Oncologist gave prescription and nurse taught hubby how to use it.  First time tomorrow.  I have it in the tummy and use a little numbing stuff.  Usually  doesn't hurt.  Hubby is  pretty good at stuff so I'm sure he can do it. Yeah!

    10 more Taxol.  Actually I feel a little better although weak today.  Long hot bath soaks do help.  Hugs to all.

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  • Amy4978
    Amy4978 Member Posts: 473
    edited December 2012

    twinspls... fips... tips.... either way hot momma lol I am so glad you mentioned the 24/7 cold look I had not thought of that and yes going braless with some perky boovs would be a must! I hope I am a good candidate for NS... wonder if you keep your own what will happen ... hmmm will they still get lol hard with cold and not with heat? to funny!

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  • jojo2373
    jojo2373 Member Posts: 662
    edited December 2012

    Amy, Twins link to Vinnie Myers will give you a good idea of what nip free bmx with tattoos will look like. His work looks great and he is close to me. Anyone who goes in the future let me know! If i opt for bmx, I think I would get the 3D done by him.

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Queen-

    I wish I could even tell u how bad this year sucked for me and not just Health wise. I can't wait to be rid of 2012!!

    Butterfly & Marioposa -

    I did dx first BMX I am glad. I have two symmetrical fake boobs. I was not a candidate for Ns As I had a reduction in the past go figure still got BC. I hate the thought of divorce I love my husband but I hate the way he treating me. I try to have faith that what is meant to happen will. We deserve to be treated better I know that!!

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited December 2012

    Mariposa, I have been reading your posts and just had a look at the blog ones too - thank you for expressing how you feel and I guess how sometimes I feel. I am copy/pasting what I posted elsewhere yesterday after a weekend in hospital. Though it made me way better physically, I found that it added to some more thoughts about this whole ordeal. I hate the self absorption that this has created and even when I am feeling good and trying to get out of the BC bullshit, it comes back so easily. Anne Tyler wrote a book many years ago called "Ladder of Years." She left her home and family spontaneously. Not saying that I want to leave home exactly and I am grateful totally for all my family/friend support system but just get tired of it all. I want to say I feel fine rather than that I feel awful or just OK. There is tension in the air at times both with my husband and with our young adult kids. My daughter tried to express how she feels about the tension sometimes when she comes to visit - like last night when she came and made a great chicken curry. She and her brother who drove her home have been sort of arguing about stuff and I said she needed to have it out with him. She said that is part of her tension with me - it is not my business and she and her brothers have to work out their differences. Now I don't know if they would be having issues or not if I did not have BC but I suspect everyone's emotions are higher with this. So, back to the post from yesterday - I also did a blog post yesterday; might as well do something while I recover!

    I was away from posting for awhile. Vancouver General Hospital does not have WiFi!  Long story short, I am grateful for the follow up from the help line at BCCA and when my blood work results came back from the pre chemo draw Friday AM, the doctor who read the results called and suggested I go to ER at VGH and when I arrived the paperwork was already in progress. My hemoglobin was 82 and neutrophils .04 so with anemia and neutropenia, I was admitted within minutes. I was there from Friday afternoon until Monday AM and along with lots of IV antibiotics and 2 units of red blood cells my counts all recovered. I got a pass from the hospital yesterday to go to my scheduled appt. with my MO. She cancelled my chemo for today saying no oncologist would allow chemo after what I had been through and I need a week to recover. So now it is next Tuesday which puts me "behind" a week but means no chemo on Christmas Eve! I posted today on my blog about my hospital stay and also posted a photos of my amazing view. Last night I watched "Parenthood" for the first time. I had heard a main character Kristina, has breast cancer and is on chemo. She too got hopsitalized for neutropenia but on Christmas Eve and way more drama but I had a much better room with a deluxe view! Photo of view is in today's blog post. 

    XXOO Marian

     PS Mariposa, keep up with the art - it is so good!

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Oh and Marioposa - good luck with the echo that's what I do daily ! Let me know if ubhave any questions I have seen thousands of hearts!!! 😍😍😍

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Marian -how do I find ur blog??

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  • marianelizabeth
    marianelizabeth Member Posts: 1,735
    edited December 2012

    Dakota it is right below my post in the signature line. Mariposa told me how to put it there.

    SmileMarian

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    OMG can't believe I missed that :)

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  • Dakota212
    Dakota212 Member Posts: 1,153
    edited December 2012

    Found it!!! Well written!!! I also gave been watching parenthood but it makes me cry. I try not to watch anything that makes me cry, get scared, or think. Haha- hence I watch sports most of the time!!! Thanks for sharing I am on the same course as u, one more A/C for me and then 4 Taxol. I am nervous about that for some reason so I will be following :)

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