Best friend has Stage IV IBC w/ mets to liver, lungs, and bones.

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sharkmaid
sharkmaid Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)


My best friend was diagnosed just six weeks ago with Stage IV IBC (ER/PR+ and HER2+) She had been breastfeeding and thought her breast inflammation was mastitis so it was left for 9 months. She has significant mets in her lungs, liver and bones. Her prognosis is extremely grim, her doctor has informed us that six months is a reasonable estimate. Currently she is having what is essentially palliative chemo once every three weeks for six months with Perjeta, herceptin and taxotere, although we are going to ask her doctor about possibly switching to Kadcyla with the recent FDA approval.


I guess my main question is, what can we expect in terms of her symptoms, health, decline moving forward? I of course hope that she beats the odds and lives much longer than is being suggested, but because she has two young children, including one that she needs to arrange a guardianship for as there is no family to take her, we have to proceed with some arrangements assuming the worst. I know everyone is different, and we have gotten some info from the doctor, and will be having another appointment soon, but I am interested in real world experiences and stories so that we can have some idea...is she likely to start to decline soon? Is there anyone here who just stopped the chemo so that they could travel or have a better quality of life? The doc says the chemo is not likely to extend her life but is providing some symptomatic relief (breast is much improved and long-standing cough is gone). Kadcyla seems to improve length of life, but at what cost? She has handled the first two rounds of chemo ok but is at times very fatigued and feels she is missing out on time with her kids. She is starting an anti-depressant (Effexor) next week as she is hoping this will help with her lethargy, but I am skeptical. What can we expect to see with the severity of her liver and bone mets? Liver pain...liver failure...bone fractures?


Also I had initially planned to take her for a second opinion at MD Anderson. Not for the diagnosis but more for the treatment plan. Now I'm wondering, should we even bother? Has anyone here had experiences getting second opinions out of state, and how did that work with your insurance? If you had to pay out of pocket, what was your cost, assuming we bring all scans, etc.?


Thanks for any responses...Because of the rarity of IBC, and then advanced Stage IV IBC, it can be hard to find people to talk to. Most support groups seem to be people who are survivors or in remission and not young women given a very short and scary prognosis right from the get go.

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited October 2013


    Your friend's prognosis is dependent on her response to treatment. She could have an amazing remission, or -sadly - not. IBC is a bitch, to be sure.


    I would be seeking a doctor with a bit more oomph. The second opinion at MD Anderson sounds like a good call, given the severity of your friend's condition.


    Other ladies with more HER2+ and IBC experience will be by with better ideas, I'm sure.


    As far as I'm concerned, if she doesn't have large brain mets, she is still in the game. But, it's always a wise idea to get the legal stuff lined up. Everyone should do that, even the healthy dudes.


    I think there's a lady on the list here who is five years out with IBC Stage 4. I hope she chimes in.


    Jennifer

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  • MamaPeg2
    MamaPeg2 Member Posts: 35
    edited October 2013


    I am sorry to hear about your friend. I have Stage IV triple negative breast with liver mets, from the first diagnoses. I have made it past the one year mark.


    I had chemo before a bilateral mastectomy, then 7 weeks of radiation. After that, we discovered that there were some more spots on my liver.


    I am now taking Xeloda - since June. After the first 3 rounds (2 weeks on - 1 week off), one spot was stable, one gone, and one shrank more than 50%.


    There are some bad side effects, but once they get the dosage to a tolerable state,it is ok. I am now on my 6th dosage. I work 40+ hours per week. My Oncologist told me he has another patient that has been on Xeloda for over 3 years, and has been in remission for 6 months. I am very hopeful for myself. I have the best doctors and nurses - I am blessed. I am not leaving anytime soon. Too much to live for!


    Take her to another doctor for a second opinion.

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  • encyclias
    encyclias Member Posts: 302
    edited October 2013


    Sharkmaid, MD Anderson has a bunch of network cancer centers and certified doctors throughout the Southeastern US. For your friend, that may be closer than Texas.


    I am so sorry to hear this and saying my prayers that a remission will be in her near future.

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  • sharkmaid
    sharkmaid Member Posts: 3
    edited October 2013


    Thank you all for your responses. Because of the extent of the bone, bone marrow, liver (in several lobes), and lung mets, my understanding is that there is nothing being considered beyond the 6 months of palliative chemo, no mastectomy, and no chance of remission. I have sent her scans to a friend who is a well known onc in another country and he agrees with the prognosis. But I will actively explore a second opinion at MD Anderson and will look to see if they have network cancer centers or certified doctors closer to her home.

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  • MamaPeg2
    MamaPeg2 Member Posts: 35
    edited October 2013


    I would definitely not even think of surgery unless they can get your friend stable. Every time you slice and dice, there is a chance of that one little cell floating around.


    I did not, and am not having reconstructive surgery. I would rather live than have boobs!


    Keep checking for alternatives!

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2013


    sharkmaid,


    Your friend is lucky to have someone like you pulling for her. Second opinions are always a good idea. Those with IBC often have chemo prior to surgery but with extensive mets, her treatment may follow a different path. Not that it matters, but the idea of seeding from surgery or biopsies is theoretical, with no hard evidence behind it. Best wishes to your friend and all who love her.

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  • concernhubby
    concernhubby Member Posts: 7
    edited October 2013


    I would not consider her chemo as necessarily palliative as long as they are monitoring closely for response. PHT is the newest regimen against HER2+ tumors and she may have a very good response. If she has extensive local disease it may be very hard to achieve negative surgical margin so the best hope is for her to find a chemo regimen that shrink all the tumors then she can look at mastectomy and radiation. 2nd opinion never hurts but it can be difficult to travel afar with young children like us. Hang in there, I hope she has a great response.

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  • sharkmaid
    sharkmaid Member Posts: 3
    edited October 2013


    thank you. She lives in Nashville. The onc has made it clear that the chemo is palliative. Another bug in this is that she has asked not to be told of her prognosis so she does not know, and unfortunately I think her lack of full knowledge about her condition has caused her to be unrealistic and delay important decisions and processes. But this week finally she did agree that she will sit down with the doc in two weeks when new scans are done and get the full picture, diagnosis, and prognosis.


    I am all for hoping for the best...but preparing for the worst. I know her well enough to know that she would rather think she had six months and fight for more than think she had years only to be surprised if she suddenly starts to decline. I have been gently encouraging her to take control by learning the full extent of her disease and diagnosis as I think that is the only way she can act responsibly with regard to her children as well as make informed choices about her treatment going forward. I think she is now moving toward a frame of mind where she can handle that, and that will help all of us, her friends, help her.

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  • Racy
    Racy Member Posts: 2,651
    edited October 2013


    You are a great friend and this is the best place, apart from the oncologists, to get great advice. Praying for your friend that she responds well to treatment.

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  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2013


    What a good friend you are! I am glad that she is ready to learn about her situation. Whether she has 6 months or 6 years, knowing what's going on puts some control back in her hands and allows her to make sound decisions for her family's future.

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  • ibcmets
    ibcmets Member Posts: 4,286
    edited October 2013


    Sharkmaid,


    My prognosis was not good from the start either. I was diagnosed with ibc, stage IV with bone mets in the spine. I was initially given up to 2 years time frame. There is a board called ibcsupport.org. I do feel this board is more active at bcorg.. I've been stable for 3 years now, diagnosed 6/09. With ibc, chemo is the first treatment. I did have surgery a year later w/ recon after being stable. I do zometa treatments every 2 months for the bone mets and AI's. I lasted 4 years on Femara & now on Aromasin/Afinitor. It's good your friend is hormone positive. There are many treatments available to her. She has a lot on her plate with mets in lungs, liver & bones.


    Being a Mom of a baby with no family support will be difficult for her. She absolutely needs to get her financials & wishes in order. A site at www.patientrecource.com has many financial & legals sources for her.


    I wish your friend the best with her journey and blessings to you for being there for her.


    Terri

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