Calling all TNs

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Cat - I hope you can find a trial in your area, maybe Emory has enrolled in some.  

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Cat and Bluebird  I'm so sorry to read you are both going through such difficult times.  We are all here for you. (((hugs)))  Kay

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2014

    Inspired - I have IDC, not IBC, but thanks for the references.  I did read through some of the TNBC questions, and YIKES.  Almost all the responses were "prepare for the worst" and stated that the people should "get their affairs in order."   I had to stop reading.   I don't think I want to get a second opinion from them if that is their attitude.   I did ask about recent protocols, but expect them to say to pay them for the second opinion.

    I got a link from tnbcfoundation and am looking at several trials in my area.  I will need to read more and discuss with my MO.

    Bak - so happy about your doggie being B9.  I'm interested that your doc said he wanted to try Herceptin.  I've actually wanted to do Herceptin even tho I am low (neg) HER2.  I just have been reading so much that it is found beneficial in TNBC.    I'll have to see what the biopsy shows.

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Cat - that is terrible (re: John Hopkins) site!  I completely agree!  I've been to 2 different Oncs (who were completely different in style) and can tell you firsthand, that the Onc's attitude has a lot to do with how I responded. One office made me feel like I could plan for the future, the other office made me feel like the other shoe was moments from dropping or had dropped.  (PS - I edited that post, I got your stats mixed up with another survivor who is IBC).

    I have used the John Hopkins site three times.  It was extremely helpful on one of my questions, and helped me make an important decision. The second question was also answered well.  I did have one question where they said "please call this number so we can set up an appointment with you" ... but I'm really far away so that is not an option.  However, I have heard of several women who do get 2nd opinions on treatments simply by sending their slides to a 2nd hospital, such as Memorial Sloan Kettering.  I seemed to remember in those instances it was covered under insurance and the places typically helped the patient get the details in order and helped with aligning the insurance approvals, etc., but I can't remember all the details.  I do remember one girl who got a 2nd opinion at Memorial Sloan Kettering and she said the process was extremely easy.  

    Is Herceptin a chemo drug or a maintenance drug like Tamoxifen?

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Aeryno:  Yes, I too was thrown into menopause - in December 2011.  It may have been from the surgery or surgery/stress combined, as I stopped having the period right before start of chemo.  I also had the joint issue but it cleared up on its own about 18 months afterwards. It used to be so bad that I was not able to bend down to wipe the floor, now I can bend down and my knees are fine. I also couldn't get up from a dining chair at a restaurant if I had sat too long.  Now everything has returned to almost normal.  I have a little numbness on bottom of my toes but I only notice when I work out really hard.  Your joint pain might resolve itself over a period of time.  It does sound like you are making progress on things, and I didn't know acupuncture could be so beneficial! For me, the key was to keep moving, and not let my body get sedentary or stiff for too long of a time, so I pushed myself to continue workouts and exercises until my joints returned to normal.

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    CatWhispurrer:  In case I miss you in the AM, I wanted to wish you well and let you know I'm thinking of you with your biopsy tomorrow.  I will be checking in tomorrow to see if you have posted any updates.  Talk to you soon and please try to get some rest tonight. Hugs!

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2014

    BAK I didn't want to read your second post but I am so glad I did.  I am so relieved you don't have to go through the heartache of losing dear Romi.  He is one great beautiful cuddly bear and so precious to you (and me).  No wonder he feels like a puppy he has got a reprieve, hopefully a long long one.  Best bit of news for the day. Tessa also has a soft lump on her tummy but the vet told me it was a fatty lump that older dogs sometimes gets so I've never worried about it.  Now for Chloe I do believe she is growing into a (big girl). She doesn't harass the cat anymore, probably the cat thumped  her.  No she's been good lately although she still pierces my eardrum if she is sitting on the back of the couch and a dog walks past the house.  I do believe there is hope for her yet!!

    Cat on top of all your anxiety you now have more.  I remember reading all those stats, links and whatever when I was first diagnosed but the wise ladies on here put me right on that issue and told me emphatically not to read them.  If I remember correctly, America has some of the best oncologists and surgeons in the world so why would you want to read a load of bull on the internet and most of it out of date anyway. We are not "preparing for the worst"  or "getting affairs in order".  I told my oncologist a long time ago what I had read and she said do you think we don't keep up with  the latest on cancer issues so that we can give our patients the most appropriate treatment there is for their kind of cancer and therefore the best opportunity to beat this beast.  I thought yea she has a point.    Don't forget we are in your pocket and we are there for the long haul  We've got your back covered Girl.  

    Bluebird I hope today has been a bit better day for you love.

    Kath {{{{{{ where are you}}}}}}.

      

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  • journey4life
    journey4life Member Posts: 517
    edited March 2014

    Cat - thinking of you today and hoping the twilight drug works. When you need to, reach for us and we'll all be there. (((hugs)))

    Bak - fantastic news about your sweet dog! 

    Bluebird - I'm sorry you're going through this...I'm sending positive energy to you along with strength and many, many hugs. 

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  • TifJ
    TifJ Member Posts: 1,568
    edited March 2014

    Cat- sending warm thoughts and wishing you an uneventful procedure today.

    Bak- yay!! B9 for your dog!!

    Bluebird-thinking of you.

    Cocker- I've been thinking about Kathy too. Maybe she won a ton of money and is out and about spending like crazy!!

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2014

    Tifj wouldn't that be nice for Kath if she had won a lot of money.  Couldn't think of a nicer person to win some then she could get the hole in her roof repaired. 

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  • CatWhispurrer
    CatWhispurrer Member Posts: 263
    edited March 2014

    I am back.  The drugs worked pretty well but they had to kinda keep waking me up a little so I could hold my breath when they instructed.  Ended up with a small pneumothorax anyway and they had to stop.  I just hope they got enough tissue.   The pneumothorax looked stable so they let me come home.  On pain meds now.   Meet with MO on Friday for results.   Thanks all for being with me!  I have to bed rest for the next day or so. 

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Oh CatWhispurrer - thanks for the update.  So glad that the procedure is behind you!  Take it easy for a bit and let us know when you hear the results.  Praying for benign results - hang in there. 

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  • slv58
    slv58 Member Posts: 1,216
    edited March 2014

    CatWhispurrer, so happy it's over. In your pocket for fri. apt. take it easy and do something special for yourself!

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  • TifJ
    TifJ Member Posts: 1,568
    edited March 2014

    Cat- glad it went relatively well. Rest up and thank you for taking the time to let us know!

    Cocker- yes, Kathy certainly deserves it!

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  • placid44
    placid44 Member Posts: 497
    edited March 2014

    CatWhispurrer,

    I googled best treatment for metastatic triple negative cancer and a bunch of good links came up, including NCI list of trials for TNBCs. For some reason it's not letting me copy and paste the links. One was a Dana Farber slideshare presentation, "Targeting Advanced Triple-Negtive Breast Cancer."

    I've heard good things about eribulin for metastatic TNBC.

    Have you posted questions on the stage 4 board? They are very knowledgeable.

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  • placid44
    placid44 Member Posts: 497
    edited March 2014

    Cat,

    This thread on TNBC foundation site seems to have good info. "New to Mets - Treatment Advise" (that was the spelling)

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  • slowloris
    slowloris Member Posts: 128
    edited March 2014

    Hi all, It's been a while (about a month) since I've been on the boards. It sure did take a while to read through everyone's posts. 

    I first want to let Cat and Bluebird know that I'm thinking of them and praying for them. Stick with the women here for support and encouragement. We're here for you.

    I had some issues with low wbc's and platelets, so my chemo regimen was altered. I'm now trying  DD carbo/gemzar every 2 wks, hoping it starts to shrink these nodules on my chest . Cat, my recent PET also showed some uptake in the medialstinal nodes. I don't know when my next scan is, but when I get it I'll let you know if the carbo/gemzar worked on it. It's not a difficult tx, just tiredness about 3-4 days after infusion. I woldn't have known of the low blood counts if it wasn't for the tests, really asymptomatic. My MO was concerned about bleeding, but I'm not even bruising.

    Thank you Inspired for all of the info about new tx and trials. My MO advised me to wait to see if C/G is working , but she's already thinking of what trials would be good for me. There are a few at Penn, where I'm currently being treated.

    My BS was highlighted on our local news. He's heading a trial, now in phase III. Its immunotherapy, where a patients own wbc's are removed, somehow altered to make their body view it as a foreign body, then put back in their body. The bodies immune response goes after the cancer and eats it up. The trial was only for DCIS, but in theory I would think it would work on all cancers.Treatment is specific for the individual. Phase I and II had tremendous results. I don't have a link, but if you google Dr. Czerniecki Breast cancer vaccine and fox 29, I'm sure it would come up.

    Welcome to the newbies. 

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2014

    Cat so glad the procedure was better for you.  Nice they had to keep waking you up for a change instead of you being awake through the whole thing. Now we just have to get through Friday.  Fingers are all crossed and digging deeper in that pocket.  Have a good rest until then. Big hugs. xx

    Thinking of you Bluebird and Fighter. Sending warm hugs for good days. xx

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  • Curlyq1974
    Curlyq1974 Member Posts: 144
    edited March 2014

    Cat and Bluebird, know that you are in my thoughts and prayers!  Stay strong as this too shall pass.  

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited March 2014

    I am on another thread with Bluebird. We are all changing our avatars to show her how we thinking of her & praying for her. Please PM me if you hear from her. 

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  • Cocker_Spaniel
    Cocker_Spaniel Member Posts: 1,204
    edited March 2014

    Sharon will do.  Hope everything goes well for her. 

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited March 2014

    Save the bluebird pic to your device with a right click or holding down in the pic until you get the save option. Different for different devices. Go to your BCO.org profile, click settings, go to your avatar setting, click on choose existing option, then pick our sweet bluebird.

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited March 2014

    Someone from another thread called Bluebird's DH. Tumor is 100% gone & she went home today! He said she should be back here in a couple of days. Praises!

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  • mags20487
    mags20487 Member Posts: 1,591
    edited March 2014

    big group hug again this time with our beloved (((((((CAT)))))))in the middle  You are consuming my thoughts and I am keeping you tight.

    as far as the menopause thing goes....oh boy!  Started chemo and had last period on my bad days after 2nd chemo...along with hair loss...what a great weekend that was.  Then no period for 18months. Was told by MO that blood test shows 100% in menopause.  Went for recon and got it when I woke up from surgery...seriously...you cannot make this stuff up.  Then nothing for the next 6 months then BAM  there is was again...more blood work and guess what....you are 100% NOT in menopause.  Had another one a couple of months later and it was a doozy!  Massive hemmorage (sp)  so doc wanted to see what was up and ordered an endometrial biopsy which I ended up cancelling and glad I did as I have not had another period now since that last one in October.  I do not miss it at this point but my hubby is just sure that it is safe and we do not need to try to prevent pregnancy....HAA!  put a sock on it buddy or go get yourself snipped cause this girl has had enough!  Hope I do not offend with my candor

    :)  Mags

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    In addition to what Sharon posted, I have received the same info about Bluebird (Kristine) and they found no other cancer in her body as well!  

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    LOL  I too got into menopause, but strangely happened right after bmx - must have been stress of dx with BMX surgery, then chemo started and periods never returned. 

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  • InspiredbyDolce
    InspiredbyDolce Member Posts: 1,181
    edited March 2014

    Cat, thinking of you for your Friday MO appointment.  

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  • Sharon1942
    Sharon1942 Member Posts: 272
    edited March 2014

    Thanks for sharing that good news,  Inspired!  Several threads love Bluebirs!

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  • simplelife4real
    simplelife4real Member Posts: 563
    edited March 2014

    Cat, we're in your pocket as you go for your results today.  (((hugs)))

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  • joyoflifegirl
    joyoflifegirl Member Posts: 7
    edited March 2014

    Hi, I was diagnosed with TNBC at 45 in September 2013, 2 lymph nodes positive, and have been through dose-dense ACT. I just had my last Taxol a few days ago and will be starting radiation in a month. I had a single mastectomy, and will probably have a bi-lateral and reconstruction after radiation. I am looking forward to sharing with other women going through this challenging experience. My Grandmother (89) was diagnosed around the same time with ER positive BC and tested negative for BRCA. Both of her sisters had BC but I don't know what type.

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