Diagnosed with IBC

traveltext

Mamiya. Be aware that all those in the trial will likely get switched to the drug they are trialling if it shows significant benefits over the placebo treatment option.

rossileo18

geeper, that is great that the chemo is working for you and you can see the results! Yay, It's so encouraging to hear good news.

Anna

Mamiya

Traveltext, that is interesting that they do that - so they get standard of care and then possibly get put on the trial drug? Fortunately for me, no guessing, the one I am doing is a single arm phase 2 trial so everyone gets the trial drug from the beginning

Mamiya

Geeper, remind me again what chemo you are on? I was so relieved when I got started on carbo and taxol when things went back to almost normal within a month. I wish I had taken pictures of the "before" because it was a dramatic change. Best wishes for continued good results!!!

Geeper

Rossileo, yes it seems like the chemo is working. I can see the external results. I hope the internal results show great results as well, but I won't know the results until I've completed my my treatment. I'm on my 4th week of taxol and 8 more to go. My MO will have me do scans after my treatment. I have both IDC and IBC. PCP ordered my mammogram due to the tumor I have and gave me antibiotics for IBC thinking I had Mastitis. The mammogram caught the inflammed lymph note, with the tumor and the ultrasound caught the thickening mass of IBC.

Mamiya, I'm only on weekly Taxol. I hope that I continue to improve.

rossileo18

Mamiya,

I have a few pictures from a while, but it's getting so bad I don't even want to look, My psychologist told me better not to look. It's too upsetting. i hate IBC. Counting the days until I can start treatment. My worst nightmare is that I'll go through all the tests this week and then find out that they don't want me.

Regarding trials, I looked at the consent form and I didn't see anything about being assigned randomly to different groups, one with the drug and one without. I guess I should ask the coordinator about it.

Anna/Rossileo

Geeper

Bon- thanks for sending me this thread, I just added it to my favorites. This is indeed helpful, thanks for always looking out for us. I appreciate you!  

Valstim52

Hello Ladies

Thanks so much for looking out for me. The hospital was very rough, but Im holding on after my second infusion. 3rd infusion is monday. I still have my taste buds, all the hair dropped, and no nausea. woo hoo.

this sight has been my saving grace. thanks so much. even when i can't respond, i can read and love you all.

val

meadow

(((Val))). You just rock out that baldy head with confidence. Soon it will seem kind of normal. Sorry about the taste buds. Even water tasted strange for awhile, but I think it will improve, Hang in there

Geeper

Valstim52- Val, that is what we are here for, to support one another  I am glad to hear that you are doing better. I lost most of my hair yesterday. I look like one of those stick figures you draw when you'rea kid with five little strands of hair.I don’t know what I would have done without this awesome support group. I love you all too!

kicks

For some, the lost of taste may get better after neoadjuvant A/C but not for all of us at all. Did not get any better during 12 weekly adjuvant Taxol. It was about 6 months after rads that I realized that food had started tasting again.

Geeper

Hi Valstim- Well tonight I shaved my head. I only had a couple of stands left, and I should have shaved off my hair sooner. It feels good. I have been sporting hats, scarves and bought myself a wig today. I am wearing my wig on my avatar. 

Everyone have a safe and wonderful Super Bowl Weekend!

sbelizabeth

Geeper, you are breathtakingly beautiful.

Geeper

sbelizabeth- Awwwh thank you . This made my day     

meadow

I agree, Geeper you HOTTIE!

Geeper

Thank you Meadow

Geeper

Thank you Bon

ibcmets

Traveltext,

I appreciate your article, but when I was diagnosed 6 years ago; I had idc as well as ibc. Some tumors take years to grow. My breast was triple the size within 3 weeks. Also, with ibc, there is a web of cancer across the entire breast; not just a tumor they can do surgery on. I believe that is why chemo is done first. Not too many years ago, when people did not know what ibc was, patients were dying within the first 2 years. Many are living much longer and becoming NED. I was 5 years stable.

Terri

Geeper

Hi everyone-

Hope everyone is doing okay. I am on my 6th week of Taxol and doing well. I've was worried about my 18 year old daughter because she found a mass on her right breast this past weekend. She saw her primary md yesterday and she found a 1cm mass and scheduled her for an ultrasound. We had the ultrasound this morning and everything checked out okay. The radiologist said her breast looked fine and that she has lumpy breast (Thank  God!!!) My husband and I have not been able to sleep well these last couple of days and have been having an upset stomach worried about her. I am thankful that she is fine. I tested negative for BRCA1 and 2 mutation. But I am having her do breast exams due to my diagnosis.   

Mamiya

Hi from me too Geeper, how is it going? I need to attend to a thread I started myself, thanks for the reminder Bon.

I may be exactly with you Geeper, TN IBC with mets to lungs (and I also have skin mets). My CT scan from yesterday shows several lung "things" that I really don't like the sounds of but that my docs want to watch for 30 days. I am still on the immunotherapy trial for now but when my liquid biopsy results come back at the end of next week if the tumor numbers are up it may be time for me to go back on chemotherapy.