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

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

Finished rads today. I thought I would be excited, but I am just tired and miserable.

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

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

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

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!

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!

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.

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

Dear Lori get well soon. Lots of hugs.

Flora

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.

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.

Thank you Lori. Have a great weekend.

Regards

Flora

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.

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.