It's back...and IBC again!

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FloridaLady
FloridaLady Member Posts: 2,155
edited June 2014 in Triple-Negative Breast Cancer
It's back...and IBC again!
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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    I can't believe I have to type this....but it came back in my skin after two years of no evidence.  I was some what prepared for other mets but I sooo hoping not the skin again.  It is spreading like wild fire and of course my doctor is out of town.  I know his drug of choice will be Ixempra, but with my neuropathy, I don't think I want to do it.  My neuropathy was so bad last time I could not hold a book and turn the pages.  I can't go back there.  I have already taken every class of chemo's and had a recurrence.  The other cancer centers have told be Phase I trials only.  I have been there and done that and will not do it again.  If this recurrence was anywhere else but my skin there would be no doubt that I would not do anymore chemo.  But I don't think I can stand to watch it eat through my skin....  I have appt next Thursday if he makes it back in town. (I only want to see him!) I sure we will do a PET Scan and have a long talk....

    Still Living in hope,

    Flalady

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  • Sadie-Rose
    Sadie-Rose Member Posts: 222
    edited June 2008

    Flalady,

    I am so sorry to hear you have had a recurrence.  It is information no one should have to hear.  I know this is a very difficult time as you gather your next steps.  This is not a place you wanted to go to, but you can get through this.  You did it last time.  You are in my thoughts today.

    Warmly,

    Sadie

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008





    Oh Nooooo! I'm so sorry, FlaLady. This is such dissappointing news. However, through your hard work and tolerance you've succeeded in putting this localized cancer in remission before, and I'm sure after discussions with your oncologist and your naturalist, an acceptable treatment plan will evolve.



    Are you on tumeric supplements? They are felt particularly helpful in skin mets. I'll be putting my thinking cap on too, as I know your cancer has special hallmarks.



    Sending prayers your way, working along with you,

    Tender

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  • Harley44
    Harley44 Member Posts: 5,446
    edited June 2008

    Flalady-

    Thinking of you, and sending lots of HUGS your way!!


    Harley

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  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited June 2008

    FlaLady-

    I posted on your other thread, but I wanted to give you a hug here too.  I know next to nothing about IBC, but hope you get some answers quickly. 

    I know you do some alternative things....have you ever tried acupuncture for pain?  Please excuse my ignorance, but I don't even know if the skin mets are painful....but if they are, I highly recommend a good acupuncture clinic.  I had the worst pain I have ever had from anything with an outbreak of shingles that my acupuncture lady took care of for me....got rid of 99% of the pain.  It was like magic!

    Wish I had more to offer than hugs....

    Deb C

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  • CaNatalie
    CaNatalie Member Posts: 70
    edited June 2008

    Hi FlaLady-

    Wish I had some answers to post. Just wanted to let you know I was thinking of you and sending lots of healing thoughts your way. Your previous posts are all great evidence to the smart and strong woman you are. I pray you find the strength to beat the beast again and return to NED.

    Natalie

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  • Boo46
    Boo46 Member Posts: 539
    edited June 2008

    Oh No! Such frustrating news for you again. Just want you to know I'm thinking of you and sending prayers your way.

    Sue

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  • PineHouse
    PineHouse Member Posts: 416
    edited June 2008

    Flalady,

    I'm so sorry this happens again.  If Ixempra is really your next option, there are ways to minimize neuropathy in the fingers (and toes).

    You know that CalGal has been using frozen gel mittens and booties product during infusion.  You can PM her to inquire.  I myself go with a less foolproof way: holding on to frozen water bottles during infusion (let go for a few minutes if it gets uncomfortable).  I also sip the ice water to help with tingly & numbness in my tongue.  Worked pretty good for me.

    Well, hope oncologist comes back and takes care of you soon.

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    My pain was so bad last night I could not sleep.  I had some good drugs and nothing helped.  I have been able to tell when my bc is growing.  And it is growing very very rapidly right now.  I can feel a sharp pain deep under in my right arm pit that is soooo painful?  I now have a tumor I can see on my skin on the front of my shoulder.  It hurts to move my arm at all.  I can it get so bad so fast???

    AlaskaDeb I going to look for acupuncturist as soon as I can. I used one for my neuropathy. I did call my doc this morning and I'm going to see his assistant at 1:00 today.  He has been in the hospital this past week trying to pass a kidney stone.

    Pinehouse - After you have had advance neuropathy damage it does not get repaired.  The damage is just compounded with each treatment.  I have found no real help this past year for it.  My last tx was over a year ago and my hands and feet are very painful still.   I had read about cold tx but my doctor says it does not work?  I still may give it a try no matter what I have to use.  Thanks!

    Tender - I don't know if you remember ...but my doctor and I discussed Dasatinib last year.  He can give it to me outside of a trial.  But he has good results withIxempra and skin mets.  I think he is going to push for this????? 

    Thank you all,

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Dear Flalady,



    Sorry, I did forget your doctor discussed Dasatinib with you last year. That's good. On top of things.



    Do you think his office might call him on his vacation and ask his opinion given the rapidity of the skin spread?



    Are you willing to take the Ixempra based on his advise of it's utility with skin mets? Here is a link to the Ixempra package insert:http://packageinserts.bms.com/pi/pi_ixempra.pdf

    Of note, with Ixempra Monotherapy, Grade 4 neurotoxity was present in 14% causing a sensory component and 1% eliciting a motor component.



    Speaking of the skin mets, when was the last time a biopsy was taken? Now with a new presentation, a biopsy to check HER status as well as molecular studies may be strongly advised. Furthermore, perhaps the biopsy could be used to guide your chemotherapy pre and post if you connect with Moffitt's genome lab. Serial skin biopsies since skin is so accessible, might offer a needed window into insight on a drug's effect.



    I hope you'll get seen at your oncologist's office today for some help and support.



    Concerned,

    Tender





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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Tender,

    I'm not up for another biopsy...I have had 7 of them already and it's always the same stuff.  Everyone thinks my receptors will change and they never do.  I think my doctor might be in today just behind from being in the hospital.  If he is there I sure they will go and get him after seeing my shoulder.

    I like the sound of GDL-0449 you sent me, but it looks to be in the very early stages of research.  I just don't know what to do.  I am really concerned about quality of life.  (hands/feet)  My employer is having a difficult year and I may be laid off this timem if I miss a lot of time. I also live alone and I don't think I can if I take Ixempra...

    Thanks for you support and prayers

    Flalady

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  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited June 2008

    Flalady-

    I am so sorry you are dealing with such pain!  I hope you get some answers today.  Today I really HATE cancer!!!

    I have you in my thoughts and prayers

    Big Hugs

    Deb C

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    I'm back from the doctor's...and have a pain patch that has not kicked in yet.  You should have seen my doctor's face today.  You would have though he had a recurrence instead of me.  I could tell it really upset him.   He started his Ixempra speech and I asked him what else do we have.  He asked me if I wanted to use Gemzar and Avastin again since I did get result with this combo two years ago.  I said this is the combo I prefer to try first.  I did not have that many side effects except a really painful arm and chestwall.  Best part was I did not loss my hair.   So I have another biopcy of Wed and waiting to get a appt for a PET Scan.  I should be back in chemo end of next week.  Isn't this just so much fun!  My family does not want me to do anymore chemo.  So this has put a stress on my relationships again with my love ones.

    Tender, I showed the doctor the write up on GDC-0449. He knows the doctor who is working on this, the worked at NCI together.  But he felt he could not get it approved because they were not testing it on bc yet.

    Thanks everyone for your support,

    Flalady

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  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited June 2008

    Flalady-

    Glad you got some plans in place and hopefully the pain patch will kick in soon.  Why does your family not want you to do chemo?  Not that anyone WANTS to do chemo, but it is a necessary evil....

    I'm sending more hugs and prayers

    Deb C

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  • amberyba
    amberyba Member Posts: 608
    edited June 2008

    Flalady,

    I have only been on the site for a short while recently dx. But your strength and character have impressed me. It saddens my heartsadSmiley.gif sad smiley image by adidaslea that you are facing this again,

     I will be praying tenderly PRAYINGHANDS.jpg Cross in praying hands image by missie10967for you.

    It sounds like you have a most caring doctor and very knowledgeble. Keep the faith. hang in there!

    In Jesus love,

    Amber

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008





    Thinking of you much, Flalady, as you go though the flurry of tests and then the wait.



    I looked around somemore at the Hedgehog pathway, and there's quite some research on it's stem cell role in breast cancer. This seems to fit to your clinical situation and I'm wondering if your doctor may appeal GDC-0449 as a trial of one if needed at some point.



    Always you are close in my thoughts,

    Tender

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Got my biopsy done yesterday.  I heard my doctor talking to another doctor working with her for the day.  They were discussing me right outside of my closed door.  She told this doctor...I had the most aggressive cancer she ever seen....  My bad day just go worst.

    She recommend I try Abraxene with Avastin??  My clinic's tumor board meets Friday and they will discuss my treatment farther. Please pray for me that we find the right treatment. I am really worried about my hands/feet.

    AlaskaDeb-  My family has been told that chemo does not work well on chest wall recurrences.  (3 doctors) Their attitude is let the cancer take it course and have some quality of life. That is easy for them to say.  I have a tumor that you can now see the skin on the front of my arm/shoulder area. My chest wall mets is growing daily right now.

    Pet Scan Friday am.  Next doctor app 6/19.

    Flalady

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    To quote a line most of us have heard a skipper say in a war movie viewed long ago... "Damm the torpedoes. Full speed ahead!". Reasoned choice of counter torpedoes at full speed, in a situation where family members may never come nor understand.



    Abraxene (paclitaxel albumin bound) with Avastin is commonly mentioned now by oncologists.



    Here are a few audiosnippets from breastcancerupdate.com on either/and for you: (paste them together, and double clicking helps them to "pop" up, if you have trouble pm me).



    Hanna Linden oncologist, Seattle, Washington



    http://www.breastcancerupdate.com/download-audio/bcu/2007/7/BCU707_Linden/BCU7_2007_Linden_14.mp3




    http://www.breastcancerupdate.com/download-audio/bcu/2007/7/BCU707_Linden/BCU7_2007_Linden_13.mp3



    And for something completely different on Abraxene, which you and I both should read more about here is Joyce O'Shaughessey from Baylor in Texas with interesting and recent commentary:



    http://www.breastcancerupdate.com/download-audio/bcu/2008/2/BCU208_OShaughnessy/BCU2_2008_OShaughnessy_10.mp3





    You're always on my mind (the song comes to mind), you're always on my mind...



    Tender

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  • amberyba
    amberyba Member Posts: 608
    edited June 2008

    My heart is breaking for you Flalady, I will pray. Be Strong, do not give up...

    In Jesus Love,

    Amber

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  • valgalrunning
    valgalrunning Member Posts: 5
    edited June 2008

    Dear Floridalady,

    I am triple negative and have a recurrence which came back as IBC.  The first occurrence was a solid tumor.  I'm currently in a clinical trial at Duke Hospital which is Avastin, Abraxane + Carboplatum.  IT IS WORKING.  About half of my breast around the nipple was a deep purple.  It was so hideous I couldn't look at it.  But it has faded tremendously in color and in size and I've only had two cycles of the treatment.  After all the purple and pink goes away I will have a double mastectomy.  I'm thinking that will be after 4, maybe 6 cycles of the treatment.  The side effects are mild.  Yesterday I ran 5K in the Komen Race for the Cure.

    Ask your doc about the trial.  My doctor is Dr. Gretchen Kimmick at Duke (Durham, NC).

    Valgalrunning

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Thanks valgal,

    Thanks for your input.  My doctor can give me this combo outside of a trial.  I have already taken Avastin and Carbo.  I will see him thursday and discuss this and Gemzar/Avastin again.

    Flalady

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  • carolynf
    carolynf Member Posts: 262
    edited June 2008

    Flalady,

    I am sending a bundle of hugs your way and keeping the faith that the combination will be the one that works. 

    Think positive thoughts, I will.

    Carolyn

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Got results no mets in lung, liver or bone.  But have six new area's of cancer.  R & L side going up my neck.  R & L chest wall and skin.  Large tumor on right shoulder front.  Tumor's grow a little "next to" lung and liver. All this in two months...

    I start chemo this morning.  My choice of chemo first Gemzar, Carbo and Avastin.  If this does not work... doctor choice Ixempra with Avastin.

    Flalady

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  • shrink
    shrink Member Posts: 936
    edited June 2008

    Flalady- There are no words except that you are in my thoughts and prayers lately.  I wish you all the best results with Gemzar, Carbo and Avastin. Glad there are no mets in lung , liver and bone.  How awful for this to have happened to you at all much more so in such a short period of time.  Hugs.

    Shrink

    Stage IIIc, IBC, 6 cm, grade 3, 21/21 nodes - chemo, bi-lat, surgery, radiation and Arimidex

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    Flalady,



    I've been watching for your post, and am heartened to hear the tough decision on chemo cocktail has been made. Many good thoughts coming your way for great response. Glad to hear it remains local, and hope you are not in too much discomfort.



    Please know you are in my thoughts daily.



    Tender

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  • TenderIsOurMight
    TenderIsOurMight Member Posts: 4,493
    edited June 2008



    My dear friend Flalady,



    Words of encouragement, words of confidence that once again your treatment will cast down the cancer beast as your body and mind and spirit has on multiple occasions in the past.



    While quiet, I know you too need our support which is offered many times privately throughout the day for you. May you tolerate your chemotherapy given yesterday, with limited SE's, all manageable with drugs, rest, and family and friend comfort.



    In prayer,

    Tender

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  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited June 2008

    I missed your post the other day.  I am SO glad you do not have tumors in your organs...that is good news :)  I hope having your treatment plan in place will offer you some comfort, and that it works well and FAST!

    I swear my brain is the size of a pea, and I may have already mentioned this, but accupuncture may offer you some pain relief from the skin mets....just a thought.

    Sending lots of hugs and prayers your way

    Deb C

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  • FloridaLady
    FloridaLady Member Posts: 2,155
    edited June 2008

    Thanks Tender & Alaska Deb,

    As always Tender your kind words touch my heart.  Chemo went OK and I feel fine but I having vertigo because of neck pain.  I have had this before but I wonder if the swollen lymph nodes in my neck are aggravating my neck. This is the second time in two weeks. My chest pain and shoulder is better now.  I took off the pain patch because I felt like I was in a fog all the time. Also today I remember another side of the this chemo combo...blood clot in my neck.  Let's hope I don't get them again. 

    Believe it or not my skin does not look as red today.  Thanks again for all your support.  My chemo clinic ladies were sooo upset to see me coming back.  But it felt like coming home in some ways...  What a great group of ladies working there.

    Flalady

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  • AlaskaDeb
    AlaskaDeb Member Posts: 2,601
    edited June 2008

    YEAH on the redness getting better already!!  I have heard that skin mets respond quickly, but that is wonderful.

    Hang in there

    Hugs

    Deb C

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