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IBC lounge: roll call, support and just a good place to hang out

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  • Valstim52
    Valstim52 Member Posts: 833
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    So glad you are better Hydranne.

  • MoreShoes
    MoreShoes Member Posts: 179
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    Hydranne, thank you for the information. Mara, thank you very much for the link. Now I have more information about this subject and I know what to ask the oncologist.

    Hydranne, I live in the Netherlands. Today it was spring for a few hours and I enjoyed the sun while working (veeeeery slowly) in the garden. Indeed the blood thinners almost killed me, nobody was checking the platelets count when I was asking them to. The normal amount is 80, under 10 is officially dangerous and I had 12! Now it's 32 and going up. Thanks for the tip about staying hydrated, I keep on forgetting.

  • mara51506
    mara51506 Member Posts: 6,173
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    Hydranne, I am also glad you're feeling better.

    MoreShoes, my goodness that is scary about the platelets. I'm glad you were able to get it checked. Glad to hear the platelets are going up. Glad the link and info from Hydranne were helpful. Staying hydrated is something I am not always the best at and I should be better at it. I am best the day before, of and after my Herceptin infusion (makes me feel less fuzzy, tired etc) but other days it sometimes gets neglected sadly.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hey all, sorry I was busy for a few days so just catching up here. I got a new bike! And, it's still snowing here :(

    I haven't heard from Rossileo18/Anna, and she hasn't logged on in about a week. I PM'd her and I am hoping we'll see her here soon... Last I spoke to her she was in the hospital but was set to be released, but possibly to a rehab facility so maybe that is what happened and she doesn't have internet access... Hoping for the best.

  • Milwmama
    Milwmama Member Posts: 84
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    New here. Going to take time to read on all these boards. Was diagnosed Jan 11 2016 with IBC, Trp neg, BRAC2 pos. Am arriving late to the party, but glad to be here. Seems we have much in common and am glad to see I'm not alone. Have a very wonderful and supportive family. Married 30 years in August, not how I planned to spend my anniversary......, two grown daughters 25 and 22.

    Have gotten through AC, lovingly referred to as the Tasmanian Devil by me. Am 3 down in Taxol, had one setback 2 weeks ago with low counts and had to skip a week. That sucked. Have a double whammy of Taxol and Carbo on Thursday. Fatigue has been my biggest enemy in all this.

    Surgery is tentatively scheduled for July followed by 6 weeks of radiation. Luckily for me, I was able to take long term disability from work. Working in a school system as a Secretary, daily contact with kids was a problem.

    Looking forward to sunny days and warmth here in Wisconsin.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Welcome Milwmama! I did carbo and taxol and I know what you mean, I called it the "carbo flu." At what hospital are you being treated? I live in Illinois but am pretty familiar with Milwaukee. Wishing you an easy week with minimal side effects!

  • Milwmama
    Milwmama Member Posts: 84
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    PurpleMinion, thanks for the welcome. I'm being treated at Froedert. They have been great so far. Within 2 1/2 weeks of discovery I had a port and was receiving chemo. Another medical group would still have been waiting to see me, so I'm happy so far.

    Hoping for minimal SE as well. My sister is coming to visit from GA. Haven't seen her since Dx. We lost our mother to the same disease 12 years ago this month. She fought 5 years. Different story than mine, but because of her history I've always been on the lookout for something, unfortunately I never educated myself enough on what she had because there was no "history" so it was a fluke. Thought I was mostly "safe", not so much. Discovered mine on Dec 30, 2015 on vacation in FL.



  • Valstim52
    Valstim52 Member Posts: 833
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    Hi Milwmama,

    Sorry you have to be here but glad you found us. . This is a supportive group. I don't know what I'd do without them. I sort of lurk, but all words good or bad help me so much.

    I only have one dd taxol left on 4/18.

  • mara51506
    mara51506 Member Posts: 6,173
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    Valstim52 Glad to hear you are on the last taxol. That is always a momentous step.

    Milwmama I echo valstim, it is a good group here. Sorry you have to be here but I do want to welcome you. I have only been posting a little while now myself. I was more of a lurker too. There is this board but also another one for Triple Negative people as well. Here is a link if you have not found it already. https://community.breastcancer.org/forum/72/topics/752075?page=1011#idx_30325


  • meadow
    meadow Member Posts: 998
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    Hugs to you Hydranne

    Milwmama, Welcome! I am sorry about your diagnosis, but I am glad you have found us. As Mara said, there also is a very active and informative thread here called, "Calling All TNs" for those with TNBC. Pop in and introduce yourself!

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Hi Hydranne!

    Oh, Milwama, forgot to mention, if you want, you can make your diagnosis and treatment public in settings, that way people can see what you are dealing with and will be better able to discuss. I also recommend the triple negative thread, good folks.

  • Sherlocked
    Sherlocked Member Posts: 1
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    Hi everyone. Let's see, I was diagnosed in 2010, had AC for 3 months, Taxol and Herceptin for 4 months after that, a double MX (double was my choice) which showed complete response, and 6 weeks of daily rads. Then about 7 additional months of Herceptin after that. But, my mom, dog, and friend all died while I was still recovering from rads, so the combination of grief and herceptin did some temporary damage to my heart. Not to mention a really REALLY bad case of chemobrain (which, btw, very slowly went away over about 2 yrs when I learned a new skill, coding). Had first part of recon about 15 months after mx, and second part about 6 months later. After that, about 4 yrs past dx, I pretty much decided that if I had no symptoms and felt well, I wasn't going to the doctor. I tell myself that I will go back to be tracked, but...not sure about that. For us, a day without a doctor or treatment is such a blessing.

    Over the last 5 years, I've been through several psychological phases, some of them better, some of them pretty awful, but that's the cycle of healing. These days I'm doing really well - definitely stronger and more energetic than many people I went to school with, for sure. We're a pretty active household with kids and pets and jobs and gardens. Happy to say I'm finally able to ride roller coasters again, lol - maybe silly for a 50 yr old but it was important to me.But five years ago, in the Spring, I very clearly remember sitting in the grass on a sunny day and wondering how I was EVER going to be able to get up, because I just couldn't imagine finding the strength and energy to get up from the ground.

    I have several acquaintances from when I was recently diagnosed and going through recon - several of them are social networking friends.So, I personally know many IBCers who are 7, 10, and yes, even 30+ years survivor (who had two recurrences but is still going strong). Many of the most successful NED and Stage IV stable folks don't network too much, (although a few do, a very great deal), but they're getting on with their lives raising kids, tending horses, traveling, and living life.

    So it's possible to regain health and achieve/maintain stability, and it's important to know that many people doing well or stable just don't network about IBC much.

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Sherlocked, THANK YOU for posting here. We all need this kind of positive outlook, encouragement and PROOF that people DO make it! Awesome, awesome, awesome.

  • Valstim52
    Valstim52 Member Posts: 833
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    Sherlocked, thanks so much for posting I appreciate it very much.

  • msumom88
    msumom88 Member Posts: 1
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    Hey PurpleMinion and other fellow IBCers! I also found Dr C after running away from my first Onc who wanted to rush to surgery immediately following my first round of chemo. This, despite the fact, I still had redness, thickening, etc. So for those newly diagnosed or needing some hope and/or maybe have not responded well initially, here is my story -

    I was dx 8/21/14 ER+/HER2+. It started virtually overnight with some redness, then in a few days my left breast got inflamed and warm to the touch. I had just had a clear mammo so unfortunately it was tough to get my PCP to agree to further testing! She wanted to treat me with a round of antibiotics first for mastitis( but I had had mastitis 7 years earlier when I nursed my daughter) and I KNEW that these symptoms were definitely not that - much too thickened/swollen and now dimpled. The following week I finally did get an mri/us and as soon as the radiologist saw the hundreds of microcalcifications(nests) they immediately assigned me to an Onc and had the port placed and started me on TCP + Herceptin( 6 rounds). I did not seem to have a good response despite the ONC's seemingly over confidence? The redness was barely going away and I only had one tx left? In fact, my onc already had me shopping plastic surgeons? Call it female instinct, but I call it God's grace.... I used the brain he gave me and ran to the internet to try and find the best IBC doctor nearby. That's how I found Dr C, he was a breathe of fresh air. I had to travel out-of-state but he said that I was definitely NOT ready for surgery yet (in fact, had they opened me up, I most certainly would not be here today!) and instead needed another 6 rounds of chemo, this time FEC + Herceptin…uggghhh. BUT, even after that, I did not have the best response, so he had me go immediately to Rads which I went kicking and screaming(well, in my mind anyway)since I had always prided myself on eating healthy and even avoiding microwaves, aluminum foil, metal cans, etc. Life is so ironic, but I firmly believe, that after 6 weeks of daily rads, it is the Rads that are responsible for my NED status today! I had a dmx in July 2015 and continue my quarterly Guardant blood biopsy check-ups. It's still early NED for me but I'm riding this this roller coaster as long as it takes me. I have since vowed to spread the word and to help as many women and lives as I possibly can so that they don't have to go down a potential wrong path but rather have a chance at a customized standard of care for IBC i.e. no antibiotics, waiting for mx, etc. Well, that's my 2 cents y'all! Oh, and if anyone is interested, I just turned 50 yesterday, am married and have a beautiful 9 year old daughter, my little miracle after trying for 11 years!. I am also involved on a wonderful supportive FB page which raises monies for IBC research & education. Feel free to ask away if anyone has questions! We GOT THIS…don't ever forget it! Envision it, Live it!

    ps oh, almost forgot…During genetic-testing, it seems I am CHEK2+, which brings a whole bunch of other stats I choose to not dwell on, such as, my bodies inability to identify and kill foreign masses but that would require a whole new thread :) Cheers!

  • PurpleMinion
    PurpleMinion Member Posts: 110
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    I love Dr. C, that is all.

  • Valstim52
    Valstim52 Member Posts: 833
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    Hello

    I've tried to stay positive, am approaching my last chemo (at least for now) on Monday 4/18. Now I have worries about surgery. Will I be PCR? They say my tumors are responding, my skin is no longer red and inflamed, breast looks norma, but I worry am I doing all of this for nothing?>The statistics are so negative for prognosis, and yes I've been on the internet.

    Can't erase the dark cloud. I'm on an antidepressant. Have supportive family. But I've cried more this past week, than I have the past 5 months. Is this normal?

    Suddenly I find myself at my wits end.

  • Scwilly
    Scwilly Member Posts: 232
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    Its so hard emotionally moving for one treatment to another. I found it very hard when I stopped chemo - I wanted to keep taking something that would be fighting this disease. The pressure to achieve that golden goal of PCR too! ( I didn't quite but was left with 1cm) In the end surgery and radiation was over with, and then its hard too. We go through hard emotions on the way.

    Now though, I can honestly say I feel so much lighter and free(er) of the worry of this disease. Its not gone but not so heart wrenching. I cried buckets too, I convinced myself I wasn't going to last long, and can remember that horrible helpless feeling. I looked at those pesky stats, and still do too sometimes. For once we wish we weren't so rare and unique!!

    I wish you comfort and confidence and this will come as the days and weeks move into months.

    Hugs Sarah

    Hug

  • Milwmama
    Milwmama Member Posts: 84
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    Thanks everyone. Glad I've found this place, what a wealth of info as well as a great source of people going through the same as me. No one around me is going through this, so it's nice to talk with those that are and understand.

    I will explore and learn. Sorry to be here, sorry any of us are here, but glad we are together :)

  • meadow
    meadow Member Posts: 998
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    Sherlocked, you just made my day, thank you for your very encouraging post.

    Msumom88, welcome! Thank you so much for your post, and for your work with IBC fundraising. What is the facebook page? Again, so glad you are here!

    Val, I am so sorry you are struggling. Can I ask, have you gone thru menopause? I do not know how old you are, but the tears and depression sound like what I went through when I was going thru menopause. I just hate it that you are struggling so., Hoping you feel better soon and here is my big hug. (((VAL)))

    Sarah, always glad to see you.


  • mara51506
    mara51506 Member Posts: 6,173
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    Valstim, though not a comfort, your feelings are normal. Even on an antidepressent, the ups and especially downs will hold for a while. Your body has been through a lot in a fairly short time. I agree with Meadow, it could also be exaggerated by menopause. Keep talking with us and any support you have at home. It does help. The way I got out of my obsession with stats is that I decided they are not about me. I only deal in how I feel that day. If I feel good physically, I am happy about that. I deal with unwell days as they come, and there will be more hard days. Eventually, the hard days to become fewer and life will be a little more routine again.

    Hydranne, you have my complete sympathy and support. Your situation with dealing with it for the longterm I can see as harder to process just do to the nature of having to be in treatment of some sort forever. I hope that the chemos are kind to you for a LONG time and I hope you get to the point where maybe just Herceptin/Perjeta can be used instead of tied to a chemo to try to get NED.

    Everyone who is here, no matter the hormone/HER2 status or stage amazing to have been able to share stories for other people like me to read, get coping strategies or just to know I was not different in how I feel. This thread and entire board helped me through so much and does continue to assist me. More than the people in life who just simply can't understand what this cancer thing is like. Thank you to everyone and best wishes to everyone on this thread and discussion board in my hopes they can be NED for at least a while.


  • Valstim52
    Valstim52 Member Posts: 833
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    Thanks so much everyone. I really appreciate the support.

    Yes Meadow, I completed menopause a few years before diagnosis. I'm 56.

    It just seems like the last week, with feeling so crappy my good thoughts and positive vibe left me. But you are right, not cancer not today. I am alive today.

    I'm staying off google Don't know what took me to it, but it was devastating. Have plans to do some fun stuff this weekend, hopefully that will help.

    Hydanne it hits like a big nasty surprise.

  • Valstim52
    Valstim52 Member Posts: 833
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    Also, wise words Mara.

    Deal with today. I was (am) such a long term planner. Always have been. I think that is part of why I struggle sometimes with the long term outlook. But I need to focus on not borrowing the worry of tomorrow and ruining today. I saw that on one of these boards a while ago.

  • MoreShoes
    MoreShoes Member Posts: 179
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    Val, I hadn't cried in a long time. After I finished with the last chemo, I couldn't stop crying. The chemo was giving me hope that I'm doing something to fight cancer. After that I felt alone with the disease. I tried not to be too harsh with myself and let me cry and mourn. I knew that I'd be feeling better soon.

    Tomorrow I have a CT scan and an MRI. Let's hope I get good news next week.

  • Valstim52
    Valstim52 Member Posts: 833
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    Oh Moreshoes thanks for that. I think thats how I'm feeling.

    Here is hoping for good scan and test results. Thanks for the support.

  • Milwmama
    Milwmama Member Posts: 84
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    Hoping for good results for you Morehoes.

    I am half way through my final champs today, so I can't imagine how you all feel or how I will feel when it's my time, but I hope that whatever you need to get you through to happier times is found.

    We all have too my I else to deal with to have to add depression or anxiety to it.

    Disclaimer: I am on Citalopram and have been since August for something work related and will stay on until done with all my treatments, just in case so maybe that is helping me right now. I also see a Therapist biweekly to talk, again it was work related to start, but the shift has changed and that I know helps too.


  • PurpleMinion
    PurpleMinion Member Posts: 110
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    Moreshoes, hoping for good scans for you! I have scans next week to see if my lungs are stable or what (last scan was a month ago, new lung stuff, but am on immunotherapy so it's hard to know what is going on). Milwmama, there is no shame in getting and keeping some help with this stuff, good that you are taking something that helps and talking, that must help. Mara, good advice/attitude about stats: we are not statistics, we are individuals! Lovely weather where I am, I hope you are all having some nice days too. Cheers all!

  • peckjp
    peckjp Member Posts: 11
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    Hello folks! I am really really new at this. So forgive me if there is some repeating. I was dx about a year ago with IBC and HER2 BC. I did not know I had IBC until after the chemo turned out to be less than effective. The original diagnosing surgeon referred to my condition as "skin involvement" as did the oncologist. Once I got a second opinion on the surgery I found out I had IBC. WOW what an eye opener that was. Since then, I began to work with specialists - both oncology and surgery. This last month I was deemed "cancer free". That said - the stuff I have been reading indicates our outcome isn't great. Someone earlier posted the idea of being careful about statistics - so I do not know what to think. I also heard we are a rare bunch. Is that not true either? How many IBC patients are on this board do you think? And how many are seeing specialist that know how to treat IBC? I'm just curious as I read in different places how rare it is suppose to be - but yet there is this group. So maybe we're not so rare? MD Anderson has a departmemt that focus's on IBC. Does anyone know anything about them? Does anyone know how I can help with any studies? Seems if we are a rare breed - then it would help someone else someday.

  • mara51506
    mara51506 Member Posts: 6,173
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    I am fellow IBCer. See my stats below, similar to yours. I am the one who says stay away from stats. Especially dealing with IBC and HER2 positive. They will say "agressive" blah blah blah. The reasons I say this, treatments are much improved over what they used to be. We have Herceptin and other drugs that help us. The stats are old and don't say how the people died. It may not have been cancer, could have been other health issue. How you do with treatment depends also on your own health while in treatment. Quite frankly, go with how you feel. Do you feel good today? If so, that is great. Don't try to project to the future too much or the fear of recurrence or treatment failure can be overwhelming. I learned this myself. For the record, I was being treated for DCIS and had my mastectomy before they told me was IBC. I had not even reached the outer skin either, just started dimpling and got the inverted nipple. I do not look back at this point. My treatment is ongoing with the Herceptin. Onward we go. Don't pay 100 per cent attention to the survival stats since again they would be affected from things like your overall health and response to treatment amond other things. I am glad you're here. This board and these discussion boards in general are helpful if you have questions or just need people who understand what you are going through. Not sure about the Hospital you refer to since I am in Canada. If you are US or another country, maybe someone else can help with that question about MD anderson.

    Sorry you have to join us but welcome.


  • mara51506
    mara51506 Member Posts: 6,173
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    I am also glad to hear they said "Cancer Free". That is great news to hear.