Just spent 7 days in the hospital.

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Annie62
Annie62 Member Posts: 1,081
edited December 2019 in Stage IV/Metastatic Breast Cancer ONLY

This just keeps getting worse and worse. Couldn't breathe last week. Onc told me to come in and a CT showed severe pleural effusions. They drained .5 liter from around my heart and .5 liter from around my right lung. Small amount in left lung they didn't drain. My onc explained that the mets on the pleura don't show up on CT or PET scans because they are so small.

So in the space of a month I've gone from maybe 1 spinal met and 2-3 small liver mets, to many bone mets, the liver mets and pleural mets. And I'm off falsodex and onto chemo. I was so hoping for a long run on faslodex since its a pretty easy regimen. I'm the breadwinner in my household and the my job has the insurance so I'm starting to get scared. I was in a pretty good place 2 weeks ago thinking I could have many years and see my 9 year old grow up although I had given up on dreams of retirement. Now I don't even know if I'll see my little one get through middle school.

Not sure what chemo I'll be on. The onc is meeting with me after I've healed from the drains a bit more to disucss options. She's mentioned Xeloda, Navelbine, platinum drugs, and CMF as options so far. I've had Adriomycin/Cytoxin/ Taxotere (2004) and Gemzar and Abraxane (2011). In the past keeping my hair wasn't a consideration but I really don't want to be known and the Stage IV cancer woman in all aspects of my life for the rest of my life right now. But we'll see.

Thanks for 'listening'. The past two days have been really hard. I spent half the day crying yesterday thinking the surgeon forgot about coming to release me from the hospital. Finally got home around 9 pm. Still hard to breathe but I do feel better. I guess as my ribs heal from the incisions I'll be able to breathe better.

Annie

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  • 4myangels
    4myangels Member Posts: 355
    edited October 2012

    Annie, I'm sorry to hear about this. My son is turning 8 this month. I understand your fears.

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  • Frapp
    Frapp Member Posts: 1,987
    edited October 2012

    Oh, Annie. I'm sorry your having a hard time and that faslodex failed you. Sometimes it takes a couple of try's before you find the right drug for you. Don't give up hope. I can tell you from experience that xeloda is doing very well for me and causes a lot less body aches. I hope you find something soon that gives your caner a run for its money.



    Pat

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  • LuAnnH
    LuAnnH Member Posts: 8,847
    edited October 2012

    Annie,  I'm so sorry to hear of how hard a time you are having.  Navelbine is not too hard of a drug for most peole and you can possibly keep your hair.  I kept mine for a long time.  It was falling out slowly but I didn't need a scarf for over 6 months.  I know other wormen have done navelbine with no hair loss.  Just thought I would throw that out in case it helps.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2012

    Annie,

    I hope your new treatments get you stable again soon.

    Terri

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  • holdontohope
    holdontohope Member Posts: 295
    edited October 2012

    Annie, so sorry the news hasn't been good.  Halaven was very good to me; knocked liver mets way back.  I did lose my hair though.

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  • Leah_S
    Leah_S Member Posts: 8,458
    edited October 2012

    Annie, I'm so sorry to hear you're having such a hard time lately. I hope your new treatment works and is gentle on you.

    Leah

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  • SonnyB
    SonnyB Member Posts: 732
    edited October 2012

    Annie, I am sorry to hear that you've had a rough week.  Hopefully the new treatment plan your onc comes up with will knock back your mets!

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  • Angelfalls
    Angelfalls Member Posts: 849
    edited October 2012

    (((((Annie))))), I'm sorry to read this. I really hope your next tx will turn things around for you.

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  • Annie62
    Annie62 Member Posts: 1,081
    edited October 2012

    Thanks for your well wishes. And the experience on the various drugs. She did mention Halaventoo.

    I need to read all the threads on the different therapies and see what the SEs so I'm informed when I see the onc.

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  • RobinNY
    RobinNY Member Posts: 766
    edited October 2012

    Oh Annie...so sorry!  What a horrible experience for you!  Sending you hugs.  

    Robin 

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  • jcb51
    jcb51 Member Posts: 382
    edited October 2012

    Hi, Annie.

    I'm sorry you're having to go through this. I discovered I was stage iv last January. They found bone and lung mets plus a few small lesions on my liver that so far they believe are cysts and not mets.

    They started me out on Faslodex which didn't work. Within a month after I had developed large bilateral pleural effusions which I had drained several times in Feb and March. Both were malignant. They started me on Navelbine which apparently worked for a while. I stopped getting new fluid in my lungs and didn't have to have them drained from March 'til late August. Navelbine is a fairly easy chemo for most. Most don't lose their hair. The worse side effect is fatigue.

    When they decided Navelbine had stopped working for me, they switched me to GemZar (another easy one). I just completed one 3-treatment cycle and haven't had any scans or tumor markers yet. Fluid has again stopped going to my lung, though, and nothing but the GemZar has changed. I had a PleurX catheter put in my right lung in August. I was no longer able to drain any fluid from it, so today they took it out and put a catheter in my left lung. My surgeon got 1000 ml of fluid out of it right after he put it in and I don't think he drained all that was there. I think they're only supposed to drain 1000 ml max at one time. So far I haven't had any problems with pericardial effusion.

    My onc told me Navelbine is a little better for lung mets than GemZar, so if you have a choice, I would push for Navelbine.

    Best of luck to you.

    Jan

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  • stagefree
    stagefree Member Posts: 2,780
    edited October 2012

    Annie, I am so happy you are out of the hospital, must have been a tough week both for you & family. When I was hospitalised, I did not want my son (7) see me there so sick with tubes in my body. I hope & pray for the best possible treatment for you. I have been dealing with severe Pleural Effusions since dx, using an incentive spirometer has helped a lot for me, maybe check that out.

    ((((hugs))))

    Ebru

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  • bhd1
    bhd1 Member Posts: 3,874
    edited October 2012

    i am so sorry you have been suffering so.  i hope there is a big turn around for  you soon.   i care.   barb

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  • soleil505
    soleil505 Member Posts: 1,790
    edited October 2012

    Anne, I'm so sorry!  Faslodax only has a success rate of 11% so you are in good company.

    Most chemos are more effective.  I was really bummed when Faslodax failed me too.  I understand how you are feeling. 

    but do not despair.  Some chemo will work .  Some are pretty livable.  I'm hoping and praying for you!

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  • Bestbird
    Bestbird Member Posts: 2,818
    edited October 2012

    What an absolute shock this must have been.  I am so sorry for your news.  here are some thoughts for your considderation:

    1 - Pleurx (or similar) Catheter -As Jan indicated, this can stop the pleural effusions from accumulating.  Mine was in for 6 weeks (my original drainage was a full litre).  You can drain the catheter at home and be completely mobile while wearing it.  I had mine removed late last year and haven't had to drain since (knock on wood!)

    2 - If you are going to do chemo, you may want to consider sending your effusions or a tumor biopsy for chemo sensitivity testing.  This is still considered constroversial and may not be covered by insurance, but I've read about many good outcomes.  Two reputable places are Rational Therapeutics and Weisenthal.  Your alternative chemo approach would be to undergo the hit-or-miss situation currently used today, whereby you are started on a chemo which may or may not work, and if it doesn't work, you move on to the next one.

    3 - If you are postmenopausal, perhaps your MO might consider Femara?  After my lung mets and effusion were discovered, my original MO wanted to start me on chemo.  I went for a second opinion and began Femara, which seems to be helping thus far.  It is more easily tolerated than chemo, so it may be an option even though Faslodex didin't work for you.

    Wishing you the best, and please let us know how you are doing.

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  • Moderators
    Moderators Member Posts: 25,912
    edited October 2012

    Annie, when you're researching chemos, the article Chemotherapy Medicines on the main Breastcancer.org site lists the brand names and chemical names, and then their side effects, how they work, and more. Just click the links.

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  • tlangston07
    tlangston07 Member Posts: 354
    edited October 2012

    Annie. So sorry things have been so rough. Praying things get better.

    Terry

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  • LauraOntario
    LauraOntario Member Posts: 377
    edited October 2012

    Annie:

    Praying for you and your child. 

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  • GatorGal
    GatorGal Member Posts: 2,550
    edited October 2012

    Annie,

    Just read your post and feel so bad for what you've been through. Faslodex didn't work for me, either. I think I'll be going on navelbine next as I can only have at most one more doxil treatment because of the lifetime limit. I have lungs mets and pleural effusions as well but have only had to have them drained once. I'm 4+ years with mets and my onc says there's lots more out there to try! Hang in there! Sending hugs your way!!

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  • banjobanjo
    banjobanjo Member Posts: 960
    edited October 2012

    I'm so sorry that you have had a bad time recently and hope that the breathing gets better every day.  Also hope they match you with the most effective treatment and that it suits you.

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  • Annie62
    Annie62 Member Posts: 1,081
    edited October 2012

    Jan - thanks for the info on your experience. That is good to know about Navelbine being better with the lung mets. I had read some about the catheters on other posts here. Much better than being in the hospital.How big are they? In your opinion, would I be able to go work with the catheter?

     Bird - that's a good idea on the chemo sensitivity testing. I'll speak to my onc about it.

    Ebru- we kept DD away until I had to stay extra time. I was a bit better. She came in and played on the bed and asked if we could order room service. :)  When I was released, we were driving home and she said, "Mom I wish we could wave a magic wand and you would be all better.'. I got all teary needless to say.

    Thanks for all the support ladies.  I'm feeling a bit better today - breathing is easier.

    Annie

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  • AnacortesGirl
    AnacortesGirl Member Posts: 1,758
    edited October 2012

    Annie -

    I'm so sorry that you have continued to get bad news.  Hopefully it's hit bottom and the next chemo will start giving you good results. 

    I just had my second bone biopsy today so I'm hoping that this one will give them enough tumerous tissue for a pathology to be completed.  I'm not sure if I'm done with the bad news or if there is more to come.  Fighting is a whole lot more satisfying than waiting.

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  • meima-Bev
    meima-Bev Member Posts: 2,432
    edited October 2012

    Annie, I'm so sorry you are going through such a terrible ordeal!  Hoping things turn around  for the better for you soon. (Hugs).....Bev

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  • jcb51
    jcb51 Member Posts: 382
    edited October 2012

    Hi, Annie.

    This past Wed I had the catheter removed from my right lung and had one placed in my left lung. The catheter tube is small and is coiled beneath a 4x4 and then a clear bandage is placed over the 4x4. Unless you would wear something really tight, it doesn't not show through your clothing. It won't be a problem on a job at all.

    I have a PleurX brand, but there is one called Aspira that might be a little better than the PleurX. It uses gravity to drain instead of the vaccuum system that PleurX uses. I had planned on getting an Aspira, but my need for one came up suddenly when I had a pneumothorax, so I went with the PleurX. I get along good with the PleurX, but if I drain the fluid too quickly or drain too much at a time, I get some pleurisy-type pain that can last several hours. It's my understanding that you don't have this problem with the Aspira.

    Below is the url of a board search I did for the Aspira catheter that will give you more info about it. You will also find info if you google it.

    http://community.breastcancer.org/posts/search?search_builder%5Bkeyword%5D=aspira&search_builder%5Bauthor%5D=&search_builder%5Bsource%5D=&search_builder%5Bdate_range%5D=&commit=Search

    If you have any problems with the url, click on the blue "search" button on the left side near the top of this page. Enter Aspira in the Keyword box and click "search".

    I hope you're feeling better.

    Jan

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  • Annie62
    Annie62 Member Posts: 1,081
    edited October 2012

    Jan - thanks for all the info. I ended up back in emergemcy this weekend with chest pain/shortness of breath and spent the night. Thankfully not a buildup of fluid again and the left lung fluid seems stable. I spoke about the catheters to my onc since I told her I didn't want to end up back with major surgery/in the hospital. Her only concern was source of infection so hopefully I won't need it,but its good to know the options.

    I get so much great info from this board. It helps me keep my composure since I at least feel like I know about different options.

    Annie 

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  • ZZZAAAZZZAAA
    ZZZAAAZZZAAA Member Posts: 43
    edited December 2019

    my mom after the shot of Faslodex she feeling cold and tired for 6 hours and after she feeling good without pain and again after 4 hours she feeling cold and tired ..........it s normal or what can i help her ?

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