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

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2017

    so sorry bride about dp’s Stroke. Traveltext I missed that you had a stroke recently. I’m still not recovered from my stroke in 2016. Can be so debilitating


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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited November 2017

    Oh, Bride, welcome back! It's so good to hear from you. I'm sorry about Deborah's stroke and and all the upheaval in your life. Sometimes we need to just float and rest on the raft while others paddle, so let us paddle for you awhile.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2017

    Valstim, sorry to hear that, what are your stroke recovery issues.


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  • bride
    bride Member Posts: 382
    edited November 2017

    sbelizabeth, I’m really glad you’re back, I felt sad when you left. Thanks for offering to paddle :)

    Valstim, like Travel Text, I’d like to know about your stroke issues and how you’re dealing with them: in part because I care and in part because I feel I might learn from your experiences.

    And Travel Text, how did/are you deal with your stokes? RE: saying goodbye to my roof. I live in the foothills of the Smokies, part of the chain of mountains on the US’s east coast. In particular, I live on a not high but very steep hill — the road up it has switchbacks. When the wind sets just right and is strong enough we get a funnel effect. That means in the flatter parts of my tiny town the wind was gusting at 40mph, but on my hill, the peak gusts were around 70mph. Since we had had a lot of rain, tress were snapping off and flying everywhere. What irked me the most was that 10 years ago, Deborah and I had re-roofed the house ourselves but this time I couldn’t do more than climb up to take some photos. Just as cancer sucks, getting old sucks :)

    bride

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2017

    I have to say that I've been lucky enough to recover well after my strokes and this is due to prompt rehabilitation. Unlike cancer where you have surgery, chemo and rads with prescriptions based on your cancer type, gene expression, etc, and you (hopefully) go into remission, strokes are just pot luck as far as effects go and hard work afterwards trying to regain as many faculties as possible. As Valstim says, they can be debilitating. They say that parts of you that don't recover in the short term, say a few months, can be lost forever. This can include speech, limb and balance issues, facial muscle issues, confusion, etc. While cancer is bad, and certainly more scary, a stroke can leave you with serious disabilities.


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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2017


    I've started a new thread on breast cancer AND strokes here:

    https://community.breastcancer.org/forum/152/topic...


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  • Junif
    Junif Member Posts: 100
    edited November 2017

    Hi All--just hoping for some info. I woke up Friday morning to a breast that was completely red as in wine color red. The redness is now looping around to my side/back...sort of following a bra line--no redness in armpit but some up on my chest. I called my oncologist who has left the practice and talked to an NP who gave me antibiotics and I was supposed to go in today for an appt., but they have decided I have to go in as a new patient since I haven't been there in a few years...and I need a referral now from my GP...I sit here and wait for a phone call. My breast skin doesn't feel thick or orange peel like. Since I'm at the beginning of the antibiotics they haven't seemed to kick in yet. I'm so worried this is IBC. The breast that is affected is the same on I had BC surgery on 5 years ago. Any thoughts? Thanks, I'm just scared to to death and the medical groups here don't seem to be very responsive.


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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2017

    Bride and TT thanks so much for keeping me in mind. The main issue is my mobility. I have a marked weakness on my left side. I use a cane occasionally. The burning pain at night is the worst. Physical therapy is the reason I can walk so well. Cognitive memory is another one. So far other than puzzles, nothing is working. I have short term memory issues.

    I will definitely check out the thread TT






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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited November 2017

    Junif , I’m no expert but I would push to be seen by someone so they can refer you sooner, even if it’s the Emergency Room. Better to raise the alarm and have it turn out false, than lose precious time.

    Val


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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2017

    I agree with Val, best get your rash checked thoroughly. Having said that, many present on BCorg with a rash but few end up diagnosed with IBC.


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  • Junif
    Junif Member Posts: 100
    edited November 2017

    Thanks Val and Travel....my GP didn't call back today despite the fact that my request was red flagged in their computer. Tomorrow I have to try again but this is disheartening.

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  • Kicks
    Kicks Member Posts: 4,131
    edited November 2017

    Not directly IBC related - BUT thought I'd post anyway.

    Saw my Dermatologist this week - good but not 100% perfect but am happy with.

    I am VERY light skinned with light green eyes and have abused my skin by spending so much time outdoor (not 'sunbathing' but active) so my skin was abused. I've had a BCC on my arm and a couple of SCCs on my face (totally unrelated to IBC).

    Well - when I saw my Derm., she couldn't find any areas of skin cancer but did find several areas (as I expected) of Actinic Keratosis (precancerous). So, I doing Imiquimod again to deal with those areas.

    Please - to all - especially those of us who are 'more advanced' in yrs (I'm 71) to stay on top of skin issues. To all - remember to use sunscreen.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited November 2017

    Timely reminder from Kicks. Last week I had a SCC removed from my cheek in the doctor's clinic and path showed clear margins. Oh if BC issues were so simply dealt with.


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  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited December 2017

    Very, very good advice. My hubs and I spend a lot of time riding bikes with bare arms. We wear buckets of sunblock now, but didn't for many years. He had a SCC removed from his wrist.

    Sunblock for any exposed skin, every day. And we both wear sun blocking driving gloves. The rays will come right in the vehicle's window.

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  • bride
    bride Member Posts: 382
    edited December 2017

    Hey TT,

    Thanks for the new forum!

    bride

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017


    Val, that's a terrible list of stroke side effects and I really hope that you can regain more of your faculties, and especially make progress with your memory issues. Is there nothing you can take for the night pain? I'm fortunate in that, six weeks post the event, I just have double vision to deal with. I've had some prism glasses made up and that is a short-term corrective, but I need full recovery to get back to driving.

    Happy Holiday Season. Let's hope 2018 is a good one for us all.




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  • amarantha
    amarantha Member Posts: 457
    edited December 2017

    Dear Kicks, do please keep us posted on how the Imiquimod works for you. I have tried to persuade my onco to let me try it for the skin mets of bc on my ex-left breast, but no luck.

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  • Valstim52
    Valstim52 Member Posts: 1,324
    edited December 2017

    yes TT I have things for the pain. Both conventional and homeopathic. I’m handling them for the most part well.

    I’m grateful to be 2 years from diagnosis, and so far NED.

    It’s a daily battle to not spend time dwelling on this new state of living I find myself facing. Longing for my prior strength and energy etc. I’m learning patience and acceptance. I often think if I suddenly had a recurrence, how I would have wished i’d Lived life with more gusto.

    Just my thought


    Val


    Easier said than done. BCO is a godsend for me.

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017

    Val, congrats on the two-year NED anniversary. You're right about patience and acceptance but, as you suggest, we need to live life to the fullest. Having had a couple of strokes and a couple of cancers, I'm now seeing the latter in a more favourable light because we get, relatively speaking, a fair time in continued treatment if we get mets. With a stroke, however, we are a hair's breadth away from real debilitation that can destroy brain and body function and make living with gusto an impossibility. Meanwhile, I strive to make each day a good one, love, laugh, eat well, exercise, and count my many blessings. And, very importantly, I read a lot, fiction, nonfiction, cereal boxes, whatever. If I were to lose this faculty, I really would be up shit creek!



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  • Meadow
    Meadow Member Posts: 2,007
    edited December 2017

    Hi all, popping in to say Merry Christmas to you all. Hugs to each one!

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017

    Thanks Meadow, and back to you. How's that lovely van going?


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  • MoreShoes
    MoreShoes Member Posts: 322
    edited December 2017

    Hope you all enjoy the holidays. May the 2018 is another NED year!



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  • minimoocher
    minimoocher Member Posts: 62
    edited December 2017

    Hi everyone, I have not been on for a while as I was undergoing eligibility testing for a clinical trial after Kadcyla was no longer working. The good news is that I have now started the Her2climb trial. Just had cycle 1 so far. It's a phase 2, double blind trial. I feel very lucky to have qualified for it.

    Here's hoping 2018 is going to be a good year for us all,

    Mini x



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  • Traveltext
    Traveltext Member Posts: 2,089
    edited December 2017

    MoreShoes, you're a TN heroine. Good luck for the year.

    Mini, so pleased that you're on the Her2climb trial and good luck. Let us know how you go.

    HNY to all.


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  • mara51506
    mara51506 Member Posts: 5,088
    edited January 2018

    Good news on the her2climb trial Mini. I am excited about that drug tucatinib since it is small enough to cross the blood-brain barrier. Would be nice to have options for us brain mets gals/guys as well besides radiation or surgery.

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  • amarantha
    amarantha Member Posts: 457
    edited January 2018

    Wow, Mara, it is exciting to hear about new hopeful drugs. I'll be looking forward to hearing more about how this works out. Good luck.

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  • mara51506
    mara51506 Member Posts: 5,088
    edited January 2018

    Amarantha, I agree totally. The more drugs we have to use, the better chance we have at a longer life.

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  • bride
    bride Member Posts: 382
    edited February 2018

    Just checking in, honestly, I’ve been overwhelmed by dealing with insurance about storm damage to our house, trying to figure out how to handle my dp’s labile and often angry emotions, and finding out that I’ve gone from osteopenia to osteoporosis.

    Other than that, I’m ok. Very glad to see most of us. Are hanging in there. If I could slow my life down a bit, I’ll be here — I miss you all.

    bride

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  • bride
    bride Member Posts: 382
    edited February 2018

    FYI, I just started a new topic in chemo: before, during, and after about the lawsuit against the makers of Taxotere who knowingly lied about Taxotere elevating the risk of hair loss or thinning and the loss of important hair such as eyelashes, eyebrows, and nasal hair. I’m on eye drops and meds because I’ve lost the protection against nasty stuff than my eyelashes and nasal hair used to keep out. And yes, over 3 years past treatment, my hair is much, much thinner.

    I doubt I’ll see any money from the suit which currently has 2,400 claimants. But I’m outraged that the makers of Taxotere put profit ahead of truth and patient wellbeing.

    bride

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  • Traveltext
    Traveltext Member Posts: 2,089
    edited February 2018


    Bride, the storm damage claim has been around for a while. What's the main issue? That, osteoporosis, and an (understandably?) angry dp makes for a handful.

    The Taxotere lawsuit sounds interesting. I wasn't even aware that all body hair didn't return post chemo.

    From me, the one lingering disability from my recent stroke, double vision, has cleared up and I'm 100% better. Amazing.


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