Just diagnosed, in treatment, or finished treatment for IBC. Posting pictures of symptoms is prohibited per our Community Rules -- you are encouraged to seek medical advice from your doctor in the event of any concerns.
Posted on: Mar 31, 2016 05:23PM
Hey all, I am starting this thread to give us a place to meet up and check in. We all know this "ain't Facebook" and since some of us have left the boards recently let's have a roll call and start fresh here. Some of the "IBC ladies" and other threads have gone a bit untended so let's see who we are:
I'll go first: dx June 2015 TN IBC, not NED but hoping to get there.
IBC is such a different diagnosis than so many of the other types of BC I think it is really important for us to talk and share and learn from each other.
Posts 1771 - 1800 (1,981 total)
Nov 18, 2019 06:04PM LoriCA wrote:
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!
Nov 26, 2019 09:21PM blue22 wrote:
Finished rads today. I thought I would be excited, but I am just tired and miserable.
Nov 27, 2019 12:19AM Flo80 wrote:
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
Nov 27, 2019 12:21AM Flo80 wrote:
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,
Nov 27, 2019 01:26PM LoriCA wrote:
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!
Nov 29, 2019 02:14AM BSandra wrote:
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
Nov 29, 2019 11:38AM LoriCA wrote:
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?
Nov 30, 2019 10:00AM sbelizabeth wrote:
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
Nov 30, 2019 08:40PM blue22 wrote:
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!
Dec 1, 2019 09:11PM - edited Dec 2, 2019 04:57AM by Traveltext
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.
Dec 2, 2019 01:44AM BSandra wrote:
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
Dec 3, 2019 05:03PM Valstim52 wrote:
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.
Dec 3, 2019 09:16PM Traveltext wrote:
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.
Dec 4, 2019 04:18PM - edited Dec 4, 2019 04:51PM by Flo80
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
Dec 5, 2019 06:02PM LoriCA wrote:
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.
Dec 6, 2019 03:46PM LoriCA wrote:
Thank you Flora :) Let us know how your meetings go on the 12th.
Hope everyone has a fantastic weekend!
Dec 8, 2019 09:10AM shycat wrote:
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. :)
Dec 8, 2019 04:05PM Valstim52 wrote:
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.
Dec 8, 2019 04:35PM Traveltext wrote:
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.
Dec 9, 2019 09:24AM sbelizabeth wrote:
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.
Dec 12, 2019 07:42PM Flo80 wrote:
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.
Dec 14, 2019 05:32PM Traveltext wrote:
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?
I’ll try to dig up the paper deliveredhere, as well.
Love to y’all from Texas.
Dec 15, 2019 10:40AM LoriCA wrote:
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.
Dec 16, 2019 12:07PM sbelizabeth wrote:
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