IBC lounge: roll call, support and just a good place to hang out
Comments
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Lori hope you are doing well and you are the best. I am getting ready for surgery on 26. Thank you for all your support
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Right before Thanksgiving Flora? That doesn't seem fair (unless maybe you aren't in the US?). Hope surgery goes well and you heal quickly!
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Finished rads today. I thought I would be excited, but I am just tired and miserable.
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I know Lori and I finished my chemo on 18. Since my surgeon was on vacation the surgery happened so late and am done with it. It was yesterday the 26 and discharged same day. How are you doing Lori
Regards
Flora
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Hi Blue I understand. As I finished my chemotherapy in thought I would be happy but was lost and now after sugary in painnand loatnas well.
Congratulations on finishing the treatment and I and wish for you’re good health and happiness,
Regard
Glora
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Blue, rads takes a lot out of you,mentally and physically. It took me months to get over the fatigue. Take good care of yourself and give your body and soul time to heal.
Flora glad to hear that your surgery is done. Hope you heal quickly with minimal pain.
I'm doing okay, just tired. I think I'm probably starting to feel the effects of 2+ years of treatment.
Hope all of my US friends have a happy Thanksgiving!
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Dear Lori, people asked how are you but really... how're you? When are the scans coming? On Monday we got inner organ MRI results, and yesterday ultrasound results, so after 10 very difficult months we're back to NED, as they don't see anything in my wife's body. I am afraid to be happy to say frankly, as we already were in this situation, and now the scary waiting game starts again... Saulius
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Just tired Saulius. The fatigue is crushing, but the side effects aren't as bad as most chemos. The earliest we would scan again would be January, unless we have reason to believe it's not working.
Glad to hear that your wife is back to NED. I hope she stays that way for a very long time. Will she be staying on Herceptin and Perjeta?
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Hi Lori. I'm sorry you're so fatigued, especially during this holiday season when we want to be DOING STUFF. Just enjoy others doing it. Sending love from Colorado. SB
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Lori Happy Thanksgiving and I hope you are feeling better. I just finished my surgery on 26 and now saw this spot on non cancer side shoulder.
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Hi Glora, Glad to hear your surgery is done and hope you are feeling well! I well know the feeling of being lost. The healing time from surgery seemed to go pretty fast, then it was anxiously waiting to start rads.
Rads really does take a toll. I started blistering in my armpit and above a lymph node they were targeting. That area has healed, and the blistering progressed to the perimeter of the main area being targeted, then slowly inward, and now is focused on the area surrounding my scar that received a boost. I am glad my RO did not sugar coat this at all, she told me up front that I would have skin slough off, and that it would be tough.
Lori hope you are feeling more energy soon!
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i start taxol the 4th if December for 12 weeks ugh. Worried about it
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BIG TIPFOR Taxol
Ask before you start if your infusion room offers ice mittens. These worked for me in warding off neuropathy of my fingers. Insist they get them or find somewhere to hire them. You need several pairs as they are rotated in the freezer as they thaw out.
Cold caps for your hair is another option.
Good luck!
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Dear Lori, thanks, yes we stay on HP, and pray we stay NED for long. I am so sorry you feel tired, let winter pass faster, it is such a dark and difficult time, summer will be easier. I am sure T-DM1 works for you, and next scans will be very exciting and good. Let's keep on pushing through, many new treatments are underway, we can do it! Saulius
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Hello all.
IVE REACHED 5 YEARS THIS MONTH FROM DX. I am triple negative imflammatory BC. I had the kitchen sink for treatment. this thread and others i can say saved my sanity in those early years and now I get encouragement from all who post.
I've been missing from most of the threads due to just life mainly. DD3 is expecting her second baby. My darling granddaughter is only 16 months .I've been happily helping her out.
I agree with you Traveltext. I feel FB has taken a lot from the threads. I just have found BCO has more accurate and authentic experiences. I've joined some groups on FB and they were misleading a bit about their situations. That has just been my experience. The key is to get support. I don't want to argue, or dissect other persons views or ideas about politics etc. I found a lot of that on face book. Again just my 1 cents worth.
virtual hugs to all. Im sending hugs to all and especially to Aramantha addk Bon(from the early days) Meadow( you really got me through some dark times. Thanks to everyone.
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Congratulations Val, you’ve achieved a real milestone, and are a role model for patients who’v had kitchen sink treatment. So glad that have the lovely distraction of grandkids to entertain and cherish. Kids do ground us.
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Hi Friends,
Just got my pathology report back and says 3.2 cm of residual Idc and DCIS in the breast. Apparently the margins are clear but have 9 nodes positive and macro metastasis in 6 of those lymph node. One lymph node has tumour in the fat outside the node.Don't know what it means seeing the oncologist and surgeon on 12 dece
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Congrats Val, that's fantastic! I'm glad that life is busy and happy for you, and glad you stopped by to check in.
MO is concerned that TDM-1 isn't working. Hoping I just have some kind of bug that I haven't been able to get over for a few weeks, because if it's not that, I either had the shortest response ever of about one month, or it's my usual frustrating pattern of chemo working in some places and not others. He wanted to stop treatment and scan immediately, but I asked if we could just continue until after the holidays because I really don't want the added stress just weeks before Christmas (my husband went to my consult to make sure I was completely honest about the symptoms I've had since my last infusion). He agreed to one more infusion to see how I do, as long as I promised to call with weekly updates until my next appointment on the 26th. In addition to increased tumor pain, I have several symptoms of cachexia so he's not playing around, not that there's anything that can be done about it if that's what it turns out to be instead of some kind of stubborn bug. I can't seem to catch a break.
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Dear Lori get well soon. Lots of hugs.
Flora
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Thank you Flora
Let us know how your meetings go on the 12th. Hope everyone has a fantastic weekend!
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Yesterday I finally received a criminal court jury summons after living here for over 22 years, and I found it a cause for celebration. In my adult life, I had only received two jury summons, both times, to my disappointment, shortly after moving out of that county/state. I've always believed that it was my civic duty to serve on a jury if called, same as voting. One of our family jokes in 2014 was that it would be just my luck to receive a jury summons while undergoing treatment for IBC, requiring me to get a medical waiver. Happily, there's nothing preventing me from serving if selected for jury duty. Another thing cancer couldn't take away from me!
Small victories, every day.
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Hello All
Wanted to give a big shout to Traveltext for always being here for all of us. YOu were such a pillar of support to me when first dx'd and through a lot of my troubles. We appreciate you.
Much love to LoriCa. I am hoping the infusions are working and you do catch that break.
Val
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Thanks Val, truth is that there were pillars of support here for me when Google brought me to BCO nearly six years ago.
Right now, I’m in San Antonio for the breast cancer conference starting Monday. Here’s me at TheAlamo this morning.
Happy Holidays everyone.
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Thank you Lori, Travelnext, shycat and valistm for the support. Travelnext have a great time at the conference
Regards
Flora
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Thank you Lori. Have a great weekend.
Regards
Flora
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Shycat, a long time ago, I was on a jury in California with Tom Selleck. He was more handsome in person than on TV.
Traveltext, enjoy Texas! And let us know what you learn, as I know you will.
Valstim, good to see you again! Enjoy those grands!
Flo, I had clear margins with my mastectomy but a lot of residual cancer in the skin of the breast. I'd had an axillary clearance done during the lumpectomy many months prior (long story) but there was loads of cancer in the nodes. My radiation oncologist told me the radiation would mop up any remaining cancer cells in my chest and underarm. I'm still here, 8 years later, so it must have worked.
Lori, you are in my thoughts and prayers frequently, my friend. I wish I lived closer so I could bring a cup of tea and give you a foot massage. Thanks for taking the time and energy to keep us updated. We are all sending friendship and healing thoughts your direction.
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sbelizabeth thank you.
I am having pain in my right shoulder for about a month and this is non cancer side. Also in that arm if I fold my hands specially fingers it hurts. I had a ct scan recently for a blood clot in the chest and they said the scan was okay. My question is whether the ct scan of the chest can pick up the shoulder. Also after I get up after sitting for a while all my legs hurt.
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Lori, always thinking of how to get you better! The big news at SABCS19 is CDK 4/6, once thought only efficacious for ER+ Her2, now being used for TNs - Are you across this one?
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30627-8/fulltext
I’ll try to dig up the paper deliveredhere, as well.
Love to y’all from Texas.
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Thanks TT but that one doesn't apply to me - it's about ER+ HER2- and overcoming resistance to endocrine therapy. The two that apply to me are HER2Climb (tucatinib) because it crosses the blood brain barrier, and DS-8201 which has a very nasty level of toxicity. I know someone who was on the DS8201 trial for two years and handled it well, but the number of deaths, the rate of interstitial lung disease, and the rate of Grade 3 and higher Adverse Events is concerning. But still, it's another tool in the tool box.
Feeling a bit better. Nausea isn't completely gone, but at least I'm eating small meals every day and building back my enevery. Just have to be careful about what I eat, but I think I'll be back to normal soon. I think I just had a bad reaction to Infusion #3. It happens sometimes. I'm even feeling up to going out and picking out our Christmas tree today, although I'm sure it will wipe me out haha!
SB I've been drinking plenty of tea. First sign of how sick I feel is when I can't even finish my first cup of coffee since I usually drink it all day. The foot massage would put me in heaven! Hugs!
Have a good trip home TT.
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TT, plan to come by Colorado next time you're in the States. We're not far from Texas and could show you what a white Christmas looks like. SB
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