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  • mamacure
    mamacure Member Posts: 256
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    Hello! I’m glad I didn’t see that brain article. Also glad to hear of 2 yr starting at DX & not surgery LW!! My upper middle back is aching most days, I stretch & get accupuncture/ acupressure but still comes back. Ugh. Also feeling fatigued lately but able to cook, clean, shop for food, drive, taking many breaks on the couch during the day. Arm is also uncomfortable with lymphedema most days but glad to be here. I’m on 3-6 months check up schedule. Take care all

  • sbelizabeth
    sbelizabeth Member Posts: 956
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    Hi, all. Like a lot of us here, I was dismayed to read the gut-punch of a headline in the mods' post about IBC mets to the brain. I was concerned enough to PM them, urging them to take the article down or at least post it where it would be less of a shout-out of doom. It appears my message was yet another victim of website scramble, because it didn't reach them. Nevertheless, they heard our messages and removed the thread. Here's the PM I received from the mods:

    Sbelizabeth,

    We wanted to reach out as we saw your post on the thread we posted in the IBC forum about the recent research news concerning IBC. You mentioned you had sent us a PM about the posting of the article, but we have not received it and so we are sorry we did not respond to you, it was not intentional. Also, it was not intentional for us to "ignore" the pushback from the members on the thread -- we simply did not save the post as a favorite so we did not track responses.

    We apologize that the sharing of this news was insensitive, but we really were just trying to help members access the take away of the report so they can be diligent about their health.

    We have now removed the thread and are messaging all members who posted there, with an apology.

    Thank you for your feedback, and we will do better in the future.

    --The Mods

  • lw422
    lw422 Member Posts: 1,404
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    Hey Mamacure! I'm glad you didn't see that post, either. It was quite insensitive in the way it was presented. I don't know why the "educational" posts aren't dumped into a single forum topic by themselves. People with an interest in them could locate them easily that way. Anyway, I'm glad it's gone.

    Sorry you're having back pain. Do you suppose it's posture-related? I find that I hold my affected-side shoulder higher than my "normal" side unless I notice and make an adjustment to my posture. This one-sided business must put a strain on our muscles somehow.

    My life is mostly back to normal, with the tightness, weirdness, swelling and discomfort that comes and goes. I stretch, exercise, walk, and use my mini-trampoline just about every day so my range of motion is good. I also like to dry brush my affected side to help move some lymph along. My LE hasn't progressed and isn't too bothersome. I don't wear my sleeve much and never at night, though I still elevate my arm on two pillows in bed. I suppose I should reschedule the appointment with the PS to discuss additional LVA bypass options but somehow I'm not motivated to do that yet.


  • mamacure
    mamacure Member Posts: 256
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    I’m glad they took down the article, good job Selizabeth & all. LW, I’ve been wanting to try dry brushing, will look into that! Mini trampoline is a great idea too! I’m hoping eventually I can just wear the night sleeve & forgo the day sleeve. I was easing into “normal” life even with the weird feelings around the scars but this back pain is starting to scare me. Hope it’s nothing. I slept well last night but the dull pain is back this morning.

  • lw422
    lw422 Member Posts: 1,404
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    Mamacure--I hope the back pain doesn't have a sinister meaning; hopefully it's just an "everyday" pain from arthritis or something simple. (Still hurts, though.) Maybe you should call your doctor and have it checked. My MO says that if I have a new pain for 3 weeks to call him.

    I really like the dry brushing; it feels nice whether it's actually helping anything or not. There are a few videos on Youtube for dry brushing methods for LE. (There are tons of dry brushing videos that are not LE-related so you'll have to sift through them).

    Finding a soft natural bristle brush is the first order of business; you don't want to scratch or abrade the skin on the LE side. I actually like using a silicone dog brush (LOL) that I found on Amazon. CLICK HERE!!

  • mara51506
    mara51506 Member Posts: 6,199
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    lw422, I try to live what I would recommend to others here, it takes a long time to get rid of the fear in the mind but actively countering negative thoughts with an opposite thought helps. Here's an example I do, when I walk, my brain tells me I am tired over and over. I might be tired but this is also a negative thought. I keep going and tell myself I am just being lazy which sounds negative but for me it is a positive thing to say. Outdoor walking for someone with poor balance (I have always had poor balance), can be difficult though a cane is helpful. I also walk what I consider slow and smaller steps help guide my feet so they don't cross in front of the other. Cancer is no different, if the fear starts creeping in, counter the thought with something good in your life instead or do something you enjoy. It has to be worked on all the time but really does help.


  • lw422
    lw422 Member Posts: 1,404
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    Mara, you are an inspiration to us all. I have to say, I don't spend a lot of time worrying about cancer or what "might" happen. Seems like my life has slowed down since I went through treatment and I'm happy to still be alive and enjoying my simple life. I try to keep up with exercise and stretching, and still have some annoying after-effects but things are pretty good these days.

    For anyone interested, there are several IBC Network Foundation videos on Youtube with a lot of good information about treatment and funding for IBC research. I found this one particularly interesting because it features an interview with "MY" doctor, Naoto Ueno, director of the IBC Clinic and research at MD Anderson. I'm surprised to learn that even the large facilities such as MDA aren't able to fund research for "lesser known" cancers such as IBC, so research depends heavily on private donations. The video is an hour long but worth the time.


  • sbelizabeth
    sbelizabeth Member Posts: 956
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    I have a question for those of us with IBC and didn't have a lump to biopsy. How was your cancer initially diagnosed? Mine was found because I also had a tiny lump, and biopsy of the lump turned up invasive ductal. The skin was biopsied later, and a lot of cancer was found in the skin. I'm aware, however, that IBC frequently presents with no lump, and that sometimes multiple skin punch biopsies turn up negative, even with all the clear signs of IBC.

    If a breast appears red, hot, swollen, with peau d'orange texture--the works--there's no lump to biopsy and and no skin punch biopsy reveals cancer, how is it diagnosed with certainty? This feels like a really basic question to me, but I'm a little stumped.

  • lw422
    lw422 Member Posts: 1,404
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    SBE, I never fully understood how the determination of IBC is made, other than it is a "clinical diagnosis," based largely on the symptoms and appearance of the affected area. Mine was diagnosed solely on the basis of a slightly swollen breast, pink "bruise" about the size of a quarter, and thickened skin that was noted in my initial scans. I had two skin punch biopsies that were negative for carcinoma, and a very small IDC tumor. I did have some "scattered multiple subcentimeter masses in the upper outer quadrant". I was examined by the IBC team at MD Anderson's IBC Clinic and the three doctors were in agreement that I had IBC.

    I have wondered how on earth they diagnose a metastasis since there's no direct IBC pathology. I pray that I never have to find out.


  • mara51506
    mara51506 Member Posts: 6,199
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    When I was first referred for a mammogram after thickened skin was found on the bottom of the right breast, they followed the mammogram with ultrasound and then finally they used a biopsy. Initially I was told DCIS and would have mastectomy and immediate reconstruction.

    IBC was later dx'd a few weeks later, breast started looking like the orange peel look, never bruised or hot and when another mammo was done with a conal view, I was told I finally had a lump behind the nipple.

    I was treat differently as I came to understand that the standard was going through chemo then surgery for IBC but my mammo was done first and then chemo came about. It did not impact me negatively as I am still NED from the chin down but it is not standard practice the way it was done for me.

  • sbelizabeth
    sbelizabeth Member Posts: 956
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    Thanks! Lw422, did they biopsy your small IDC tumor and find cancer?

    IBC, from what I understand, is always either invasive ductal (most of the time) or some other invasive subtype, such as lobular (rarely) on microscopic examination. It's these cancer cells within the dermal lymphatic channels of the breast that makes it IBC. You can't see IBC in a microscope and say, "that's IBC" because it's a clinical diagnosis, not a pathological finding. Thus, I would think that if/when mets are discovered, the pathology of the metastatic tissue would be either ductal carcinoma or some other subtype that's identifiable by microscope.

    I know that mammograms, ultrasounds, MRIs can identify findings that are highly suspicious for IBC, but without a solid biopsy that's positive for cancer somewhere within the breast or the skin of the breast, I don't know how they can absolutely diagnose IBC. You sure wouldn't want to treat a stubborn mastitis or some kind of raging dermatitis with chemo, mastectomy, rads, etc. But you don't want to miss an IBC diagnosis either!

  • traveltext
    traveltext Member Posts: 1,053
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    Diagnosis of IBC is an important topic and a perennial one, so it's good to hear the first-hand experiences of those diagnosed and to go back to the science, as we know it, of IBC.The lump/no lump nature is what that often confuses patients when this necessarily clinical diagnosis determines treatment. When you think of it, the dermal invasion, which is not proven to involve cancer unless there is a punch biopsy (rarely performed to my knowledge) and the inflammation could be an infection from the biopsy needle! Or something else if you've not had the biopsy.

    I had a lump for months before I could persuade my GP to prescribe an ultrasound. When I finally presented with a red, inflamed left breast and inverted nipple, I was sent to the breast surgeon, she quickly referred me to the oncologist to began neo-adjuvant treatment. Only when the lump decreased in size and the inflammation subsided would the surgeon tackle the Mx. Stage 3B was the diagnosis because two nodes were affected.

    With neo-adjuvant treatment you don't get to find out how successful the chemo is until the Mx pathology. In my case the there was no pCR. Hence off for 33 doses of radiation.

    For the newbies here, us long-temers get your concerns. That we're still posting should give you encouragement, regardless of where you are in your treatment. A picture is worth a thousand words, so here you go.



    image

  • lw422
    lw422 Member Posts: 1,404
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    SBE, Yes... they initially biopsied the small tumor (which the biopsy identified as IDC) and also a single swollen node in my axilla. I'll be the first to admit that I still have a lot of questions about IBC, but I avoid researching because it scares me all over again. There's too much sensationalism "WORST BREAST CANCER POSSIBLE!" "MOST AGGRESSIVE!!" "HIGHEST MORTALITY RATES!!!" Just ugh. I want the information, not the terror.

    TT--I did have pCR after chemo and from surgical pathology, but I was whisked to radiation as soon as I healed enough after the mastectomy. I hated it all, but I'm glad I had every possible treatment to keep it from recurring, especially since I'm TN.



  • lw422
    lw422 Member Posts: 1,404
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    Just popping in to say that I hope all the IBCers are doing well and thriving. For those of you in the USA, I hope you have a wonderful Thanksgiving. I suppose we all have something to be thankful for. Take care of yourselves and let us hear from you.

  • mara51506
    mara51506 Member Posts: 6,199
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    Happy Thanksgiving to our US IBC family here as well.

  • mamacure
    mamacure Member Posts: 256
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    hope everyone had a great Thanksgiving my back pain has gotten a little better so has my mood. I’m seeing an oncology rehabilitation doc next week and I will ask him about the back pain. LW I got a dry brush I like it that dog brush is a good idea since my brush is very stiff. take care everyone!


  • mamacure
    mamacure Member Posts: 256
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    hope everyone had a great Thanksgiving my back pain has gotten a little better so has my mood. I’m seeing an oncology rehabilitation doc next week and I will ask him about the back pain. LW I got a dry brush I like it that dog brush is a good idea since my brush is very stiff. take care everyone!


  • mara51506
    mara51506 Member Posts: 6,199
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    Mamacure, hope they find and get rid of your back pain for sure.

    I have a sore back but I was doing knee lifts yesterday and believe I overdid then sat on the couch today causing stiff muscles.

  • mara51506
    mara51506 Member Posts: 6,199
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    Mamacure, hope they find and get rid of your back pain for sure.

    I have a sore back but I was doing knee lifts yesterday and believe I overdid then sat on the couch today causing stiff muscles.

  • mamacure
    mamacure Member Posts: 256
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    Thanks Mara!

    Hi everyone, I am happy today. My naturopath ordered blood work came out great. Cooper, zinc levels good, Vitamin D went up 50%, all inflammatory markers now at optimal levels. Wow. I am so happy to hear this! I also saw Oncology Rehab doctor at Cedar Sinai Beverly Hills. LA traffic was nuts.He was amazing. He said upper back pain is common, he checked my strength, found I am still very weak. I will start PT next week including massaging radiated mastectomy areas. I may also join a brain fog clinical trial. He wants me to try Wisconsin ginseng for energy. He was a very kind & helpful cancer rehab doctor. Hope everyone is doing well.

  • preciousbecky23
    preciousbecky23 Member Posts: 23
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    Checking in to say hi and hope everyone is doing well :)

    Mamacure, I am so happy for you and your great bloodwork results!! I love hearing positive news :) Are you following a certain diet or including/avoiding specific foods? I’m interested in seeing a naturopath/homeopathic doc as well but not sure where to look for a reputable one or even if my insurance would cover it. I’ll have to look into that.

    I know the SABCS and IBC symposium were both held last week, anyone hear of any breakthroughs for us IBCers?

    As for me I start cycle 6 of xeloda this week. Feet are red, peeling and get really sensitive/painful, around day 14 but I don’t mind as long as it’s hopefully working! I also found out my new MO is leaving to start working in drug development for BC so I’ll be seeing another MO starting in Jan. My original MO left for the same reason, so this will be my third since dx. Slightly concerned about the lack of continuity but happy they’ll be working on new treatments.

    We are traveling 6 hrs away to see family before the holidays. I’m sure it’ll be exhausting but will good to see some family members I haven’t in over a year. Wish me luck traveling with the 4 littles!!!!!!

  • Flo80
    Flo80 Member Posts: 212
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    just saying hello to everyone

  • bsandra
    bsandra Member Posts: 1,017
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    Hello dear flo80!:) Saulius

  • traveltext
    traveltext Member Posts: 1,053
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    HAPPY HOLIDAYS TO ALL

    I know everyone here is going through different experiences post diagnosis with their treatments, but I hope everyone can get some peace into their personal lives at this time of year. HeartRod

    There's a link at the end of my story on the recent Our MBC Life Podcast on Breast Cancer and Humor.

    https://malebc.org/1751-2/




  • lw422
    lw422 Member Posts: 1,404
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    It was two years ago that I noticed the pink "bruise" on my right breast and my life turned upside down. I could never have made it through the nightmare without all of you, walking the scary path with me. I will forever be grateful for you all.

    Merry Christmas/Happy holidays to all of you, and may you be blessed with good health!

  • lw422
    lw422 Member Posts: 1,404
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    From the Facebook page of Dr. Naoto Ueno, former Director of the MDA IBC Clinic, announcing a promising clinical trial for a new treatment of triple negative IBC...

    "Dr. Xiaoping Wang Lan Phi Toshiaki Iwase Takeshi Semba Trịnh Vạn Ngữ and our colleagues have dissected the mechanism of how EGFR regulates the immunosuppression status (more resistance to immunotherapy) of triple-negative IBC. We are now conducting a clinical trial of combining immunotherapy plus anti-EGFR antibody with chemotherapy. We hope that this will be a game-changer treatment for patients with IBC. Published in Science Advances.The trial link is https://clinicaltrials.gov/ct2/show/NCT05177796...

    Brief Summary:

    This phase II trial tests whether panitumumab and pembrolizumab in combination with standard of care chemotherapy before surgery (neoadjuvant) works to shrink tumors in patients with stage III-IV triple negative breast cancer. Panitumumab is a monoclonal antibody that may interfere with the ability of tumor cells to grow and spread. Immunotherapy with monoclonal antibodies, such as pembrolizumab, may help the body's immune system attack the cancer, and may interfere with the ability of tumor cells to grow and spread. Chemotherapy drugs, such as paclitaxel, carboplatin, doxorubicin, and cyclophosphamide work in different ways to stop the growth of tumor cells, either by killing the cells, by stopping them from dividing, or by stopping them from spreading. Giving panitumumab and pembrolizumab in combination with neoadjuvant chemotherapy may kill more tumor cells in patients with triple negative breast cancer."


  • mara51506
    mara51506 Member Posts: 6,199
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    TT, hope you and everyone else here had a good holiday and happy boxing day to those who celebrate as well.

    I had an early dinner with DB and SIL and spent Christmas at home, watch a few movies, one good one was Glass Onion, A Knives Out mystery with Daniel Craig as Benoit Blanc. Think modern day Agatha Christie or Hercule Perot, good mysteries and I highly recomend the first Knives Out movie and the Glass Onion. Quite enjoyable.

  • mamacure
    mamacure Member Posts: 256
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    Happy New Year everyone! Appreciate you all. Thanks LW for keeping us updated on the latest clinical trial. Those movies sound good Mara, good to hear from you TT. Precious Becky I try to eat healthy but some times slip up. Green tea every morning, turkey tail supplement & Prothrivers Wellness flavonoid everyday. My back pain comes & goes. Seeing a new MO later this month for my next follow up. Hello Flo

  • preciousbecky23
    preciousbecky23 Member Posts: 23
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    4 more days until I am DONE with Xeloda!

    How’s everyone doing?

  • mara51506
    mara51506 Member Posts: 6,199
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    I am doing fairly well physically. I have employed a cane due to balance issues which surprisingly are not related to cancer. I have always managed to fall sometimes but I feel more secure with a cane. My scans are coming again, not too concerned about them. Glad you are almost done Xeloda.