Chemotherapy for Stage IV

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  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited June 2012

    Kristen - am sorry to hear all this about the lymph nodes but sooo glad you have a ct scheduled.  I truly remember the panic I felt when my onco wanted to start chemo before surgery.  I struggled with 'gotta get these mother ships, my boobs, off me'.  I was on anti-depressants, but still found myself crying alot.  Finished my chemo in Sept, had a PET and Bone scan.  They both showed NED.  No evidence of disease was a thrill to hear but I still wanted the bi-lat mastectomy.  Then in Oct I went to Cancer Treatment Centers of America.  They said my team was doing exactly what they would do EXCEPT, CTCA would not recommend the BMX because the cancer had already spread and why put the body through the stress of surgery and recon and for me radiation.  Like you said "don't want to waste my feeling good time".  Well, finally, in Feb I think after major lows, I made up my mind and that is really when I started 'living'.  NO surgery for me, no proof it'll give me more time in the end and I'm not willing to give up 'my feeling good time'.  Glenna and Marybe and several others were here for me through it all, lots of PM's and the like.  It is a personal decision, one that was very hard for me. 

    My DH has been a ROCK for me, we talk alot about this RB.  I am so sorry your husband does not, but please explore it, openly, as much as he will allow.  Go to the support groups too. 

    Glenna - don't kno the doxil, but praying it works.

    MaryBe - How's treatment going?  Good news I hope!

    Well, I'll step down now and again, sending all healing positive energy and prayers.

  • soleil505
    soleil505 Member Posts: 105
    edited June 2012

    A little insulting yet good that she thinks you are nuts.  Her thinking that might be because you are not doing as bad as you think.  I hope not.  I've felt my lymph nodes hurting odd times, like when a chemo is actually working.  I think its fighting them somehow.  I"ve felt pain and the nodes were okay..  I hope that is what it is for you.

  • Unknown
    edited June 2012

    Kristen,  I have thought I felt lumps before in my breast and they always say it is just fibrous tissue....heck, I think my remaining natural breast feels like a beanbag...full of lumps.  If I had to do it all over, I would ask for a double mastectomy just so I would be even. 

    MemaSue,   Hope you stay NED for a long long time.....that is wonderful.   I am still doing well on the Adriamycin so far as I know....thanks for asking.   I had them do the CA27.29 again on Thurs. so will find out if the numbers are still going down on Monday...know it is pointless to worry, but I always do.....keep thinking it can't last forever.  I have been on it since Dec. 7,.  I accidently found out again the sun and Adriamycin do not mix.....wore my 30 SPF every day when I was sunning while visiting 3jays, but did not wear it when we went to Butterfly world and now have a rash on my chest and neck.   Florida sun is strong stuff.  

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited June 2012

    Morning Marybe!  Thank you...but you kno you are my inspiration right?  Well you are!  Keep us posted on those numbers next week.  I'm exercising in our clubhouse pool and where sunscreen 30....this desert sun is a killer too.  But too hot to do my walks, so pool it is.  I'm careful tho and always early in the day.  Is there something you can put on the rash, aloe or something?  Hope it's not too painful after everything you've been thru.  Sounds like you had a good time in FL tho!

    Off to the pool....

    Always love and prayers to all!!

    Sue

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2012

    Hi all,

    haven't been on for a couple of days but for a good reason! I'm at the beach with family and my own private nurse (my sister). Doing okay on the doxil other than the big C which I started treating today and some pain that I'm thinking is from the neulasta. Kristen, when is your ct scan? I know you are looking forward to some resolution ASAP and am really wishing the best for you. Marybe, thanks for the sun warnings. Tomorrow is supposed to be really hot so I'll use plenty of sunscreen. Glad you had such a good in Florida! MemaSue, YOU are an inspiration!!



    You are all such a wonderful group of friends!

  • kfontaine
    kfontaine Member Posts: 47
    edited June 2012

    Glenna- scan is tomorrow, tuesday at 1200!! Very nervous!

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2012

    Kristen,

    We all get nervous for scans .... Just know that lots of us are praying for good results for you ... And some are keeping their fingers crossed!! Please get back to us and let us know!!

    Marybe, I'll be at the beach today but promise to wear sunscreen and stay under the umbrella!!

  • kfontaine
    kfontaine Member Posts: 47
    edited June 2012

    Thanks! Needs lots of prayers and lots of fingers crossed!!! Scared.. So very scared!

  • china
    china Member Posts: 56
    edited June 2012

    Kristen Good luck with your scans. Hope all is well. It is okay to be scared. Scans suck! Dawn

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited June 2012

    Kristen - Well scans should be done.  Hopefully they gave some hint as to results?  Sometimes they don't so don't be nervous.  Am praying all went well...and please check in as soon as you hear something.

    Glenna - thank you!  And...I too had HORRID bone aches on the neulasta.  Making my bone marrow make white blood cells or something like that...oh da pain.  All done with that, but still....suffer from arthritis type pain and stiffness alll the time.  Some days worse than others...but do believe my exercising is keeping it managable.  Maybe a pain pill twice a week now.  So hang in there...am sending healing energy and prayers that things will get better soon.  Enjoy your vacay at da beach!!

    China - good to hear from you.  How you been doing?

  • kfontaine
    kfontaine Member Posts: 47
    edited June 2012
    Thanks for all the well wishes!!

    Yes scans done but no hint.... Unless the ct tech asked when I would see my doc... If that is a clue that is not good! But I know I read into everything! Hopefully it did not mean anything! Just waiting and waiting! Usually 3-4 days of waiting! But I know there is nothing anyone can do either way! So waiting it is! I go for herceptin today so I might see onc in passing. Please keep prayers coming!

  • Padiddle
    Padiddle Member Posts: 139
    edited June 2012

    Hi everyone:  Sounds like a lot of "beach and days in the sun," going on here.  Hope you all enjoy your days with family.  Haven't been too active lately on the boards.  Was having trouble with migraine headaches on top of the chemo, so had some rough days.  PCP started me on Maxalt migraine meds, so hoping that does the trick.  Had my 3rd every three week Taxol Monday.....all is well.  Skin mets still spreading...tumor marker not moving up or down.  Not sure when my next scan is. 

    Most of my hair is gone now.  Sensitive to sun too.  Was reading about the mx decision.  I had my second breast removed in Dec two years after my metastatic diagnosis.  There was a hidden tumor in that breast that did not show on PET scan or mammo.  It was 1 cm away from my chest wall.  For me, with the disease spreading, I think it was wise to remove it no matter what.  Circumstances can be different. 

    Here's hoping for good scans and good results for all here. 

    Jean

  • rjdrobyn
    rjdrobyn Member Posts: 14
    edited June 2012

    Hi Ladies,

    I was wondering if anyone has any experience with Ixempra? Navelbine is no longer working for me so I will start Ixempra on Monday.

    Thanks

  • Unknown
    edited June 2012

      I don't have time to comment on posts since I need to get ready for work, but wanted to let you know that the Adriamycin is still working!!   I saw the onco and got my treatment today as well as the results of the CA 27.29 done from the blood they drew last Wed.   528.9!!!!    Not a really dramatic drop like I have been getting, but it was more than 300 since it was 850 something last time so I am elated.   I am thinking it is probably like when you are on a diet, the closer you get to goal, the slower it goes, BUT at least it is still going in the right direction.  I just wanted to share my good news.   I continue to love the red devil and am so glad he decided to try it on me!!!   Have a good day everyone and try to keep thinking positive.   I was certain I would get bad new this time and was very pleasantly surprised.   

  • kfontaine
    kfontaine Member Posts: 47
    edited June 2012

    Ok spoke with onc during herceptin tx and the ct showed lymph nodes in neck- but not consistent with mets. And also saw stuff in my lungs- which is new. Something about alveoli not filling up- almost collapsing??? But not consistent with mets??? He said it is good news..... He said I should be happy! Then why am I not happy? That is all they saw! But still nervous!

    Kristen Diagnosed: 01/23/12 IDC, Grade 3, ER+/PR+ HER 2+
    Chemotherapy 02/23/2012 carboplatin, TaxotereTargeted Therapy 02/23/2012 Herceptin
  • china
    china Member Posts: 56
    edited June 2012

    MemaSue56, Hi, hanging in there. Doing chemo, tumor markers are crappy, I am jaundice but my liver scan shows stable but the onc thinks there may be small mets not picked up from this scan that is blocking the smaller ducts in the liver. At least the biliary duct is good. I think personally that the adverse reaction I had doing Aromasin started this crap. I was fine the first month on it then into the 5th week of it had a severe rash like chicken pox all over, even in my ears. The 6th week, noticed faint yellowing of the eyes then quit the drug on the 7th week, short of a 2 month tmt. The previous onc I was seeing still wanted me to continue with the Aromasin for 2 more months dispite my bili level being at 3.6 on May 1st and my tumor markers were climbing. He refused to order a Ct scan too. His attitude was well your metastatic...boy was I pissed. Saw someone else and they stopped the drug, did an ER CT scan that same day thank god. I now have a wonderful onc whom is so smart, gives hugs and listens. Hugs Dawn

  • rjdrobyn
    rjdrobyn Member Posts: 14
    edited June 2012

    China,

    How long have you had your liver mets and what drugs or treatments have you had? I just received scan results today and we have added liver mets to the list with bone and lungs. I will start Ixempra on Monday. Just wondering what I am in for with the new mets in the liver. Thanks for anything that you want to share.

    Robyn

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited June 2012

    Marybe - WONDERFUL NEWS!!  Congratulations...will pray it keep working!

    Kristen - Go get a 2nd opinion.  Many times tis necessary.  I don't understand all that he told you or what it means, but if it were me, I'd be getting another opinion.  Continuing prayers!

    China - So glad you dumped him and went elsewhere.  Having a good team makes all the diff in our lives.  I suppose you are on diff tx now?  When is your next scan or lab work due?  Keep us posted...in meantime....prayers and healing thoughts!

    Sue 

  • kfontaine
    kfontaine Member Posts: 47
    edited June 2012

    I actually read the radiology report too, and it all says at the end that there is no metastatic bc. So, I need to get a copy of the report too. The onc said that there is no visible metastatic disease. The thing with the lungs, it sounds like what people get when they are bed ridden....??? I dont know, i am so confused right now. 

  • azwoman10
    azwoman10 Member Posts: 1
    edited June 2012

    Hi , I just wanted to introduce myself. My name is Andrea I am a stage 4 with mets. I was diagnosed in 2002 and just celebrated on May 7 2012 10 years and still on the green side of the grass ! LOL

    I have never been on a message board before. I wanted to ask how each of you handle the anxiety of this journey? Sometimes for me ..I get so tired of having my life revolve around Breast Cancer I want to scream. Am I the only one?

    Thank you all for listening. Andrea

  • rjdrobyn
    rjdrobyn Member Posts: 14
    edited June 2012

    Congratulations Andrea and Welcome to this forum. There are some wonderful people in these message threads and I, for one, have found valuable information and comfort in reading through the many messages.

    As for your comment about your life revolving around Breast Cancer, I feel the same way. Sometimes I am able to somewhat put it at the back of my mind and at other times it is first and foremost. It is always dependent on the side effects or the scan results but I try to remember that it is all in how you handle the various challenges in your life. But, absolutely, there are times when I just want to scream and say "no thanks- I have had enough."

    Once again, Welcome!

    Robyn

  • blainejennifer
    blainejennifer Member Posts: 441
    edited June 2012

    Andrea,

    10 years with mets! Oh please, tell the story. I'm collecting inspirational tales to repeat to myself late at night, when I get the cancer heebie-jeebies.

    Thanks,

    Jennifer

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2012

    Hi all,

    Back from the beach where I had a wonderful time with lots of family members. Although I had my ipad with me I had very little time to get on. Doing some catch up today. Marybe, so happy for your continued good results. You go, girl! Kristen, hallelujah to a good report .... no bc mets. Hopefully you will get some answers as to what is going on with your lungs. Will you see the ONC soon for some kind of recommendation? Perhaps a 2nd opinion or referral to a lung specialist? Dawn, glad you have a new ONC that you're loving! Your ex ONC sounds horrific. I handled the Doxil pretty well with few SE's .... the C train which started moving again after a few days of meds and fatigue. Napping at the beach was helpful! No treatment til July 11th. What will I do with myself? Andrea, welcome and yippee for 10 years! We'd love to hear more from you!

  • MadhuriUpadhyay
    MadhuriUpadhyay Member Posts: 2
    edited June 2012
    Hello All,

    My Mother recently found out that she has metastatic breast cancer (after 10 years) & is spread in her right lungs & some areas of her bone (pelvic, ribs & shoulder bone). Her receptors are HER2-negative & ER+/ PR-. She is expected to go through chemo followed by potentially a harmonal therapy.

    Is anyone in a similar situation & if so, what treatment were you given & how are you responding? I am looking for hope, she is only 56 & we cannot afford to lose her

    Prashant

  • GatorGal
    GatorGal Member Posts: 750
    edited June 2012

    Prashant, I sent you a private message. Glenna

  • alesta29
    alesta29 Member Posts: 240
    edited June 2012

    Hi all

    Just popping over from the X Diva thread to wave and hope everyone doing OK. Just wanted to send a huge over-the-ocean wave to Kimber (USAFmom) who is hopefully lurking and doing better on the next chemo.

    Laurie x 

  • MemaSue56
    MemaSue56 Member Posts: 2,061
    edited June 2012

    Andrea - sorry you have to be here at all, but welcome.  Lots of good info on BCO, many diff topics and lots of research info.  So fire away with questions anytime.  Happy 10 year 'green side' anniversary.  Can I ask, have you been stage IV since 2002 or was it a recurrance?  I still struggle with bc being 'center', I succeed, most of the time, in replacing my 'scary' thoughts with positive ones.  Not easy.  Are you in treatment of any kind still? 

    Glenna - wow sounds like you had a wonderful time, and got out of there before all this bad weather huh?  No treatment now til July...wonderful.  Sometimes I would like NOT to have to do my treatment every 3 wks, but then hey, it's whats keeping me alive...so I git over pretty fast.  I'm going to Portland, OR on July 6.  Will see 2 girlfriends from long ago, DH will go with, and we will spend 2 nights with one of my brothers.  Am looking forward to it.

    Prashant - So sorry to hear the news about your mom.  I am triple positive with bone mets, my treatment now is just hormonal, but being only er+ I don't kno what treatment her docs will recommend. Once you know, post it and we'll help all we can.

    Sending positive, healing energy and lots of prayers out to all!

    Sue

  • MadhuriUpadhyay
    MadhuriUpadhyay Member Posts: 2
    edited June 2012

    Hello All,

    Thank you for all your support. The doctors recommended 12 weeks of Taxol with a combination of Carboplatin followed by hormonal treatment. Her receptors are ER+/PR+ HER2 negative.

    Thoughts?

    Prashant 

  • Naniam
    Naniam Member Posts: 586
    edited June 2012

    Haven't been on the board much lately- had painters inside and outside and then we had our first ever family vacation. I've been reading and trying to catch up but think I'll have to do it again tomorrow when I am not feeling the effects of Oxy.

    Monday, started the 2nd round of Abraxane.  lost my hair; having some problems with balance and took a hard fall out of the bathtub.  Really, really lucky didn't break a hip or my back. 

    I am literally dozing off - will try to catch up better tomorrow.  Just wanted to say hi and check in. 

    Brenda

  • Unknown
    edited June 2012

    Sorry, you had a fall Brenda...was the fall due to neuropathy also?  I had it in my feet pretty bad with Abraxane and at the end it was going into my hands which was when I quit it.   It was the roughest one I was on, BUT it really did work on the tumors. 

    I am getting my 30th dose of Adriamycin today and am really hoping that since the numbers have continued to drop the scans we do at the end of July will show some shrinkage in the tumors in my liver.   As I have always said, I can live with the bone mets, but we need to keep my liver functioning.  I have another echo scheduled in a week.  

    My toes look like something out of a horror movie, but Oh well. 

    Hope you have a wonderful time in Portland, Sue.....my sister lives there and I am always impressed by how green everything is and the beautiful flowers.   

    Have a good day, ladies.