IBC ladies please,how are we all doing!

hi ladies curious anyone here on lifelong infusions of herceptin/perjeta

oh wow thanks bon_ my mom is the one actually on it, she just finished chemo and is now on to her lifelong infusion she has been getting rashes on her face but other than that really no side effect

Hey Bonnie,

Can you point me to any info on Herceptin infusions forever? I've been getting them for just over a year, I kept having them scheduled, but I had not thought to ask about how long I'd get them.

Thanks, my friend,

bride

Jmo06: I am on lifelong infusions of Herceptin and Perjeta. Ann

Sherlocked, Thank you so much for the flash-forward! I'll be at one year post diagnosis July 18, and I've been very fortunate to be PCR after surgery. Still doing radiation and will be finishing up Herceptin. It's good to hear that you came out of the energy black hole. On occasion I get down and have a pity party for about a day because I'm so tired of being tired! Congrats on your renewed energy and health. It was great to read your post

Mj, Nice to meet you. I am so glad you found us here on BCO!. I like Bon, did not alter my diet to include antioxident rich foods, as my Onc said not to do so until after treatment. He said he had read literature where the antioxidents strengthen both healthy cells AND cancer cells, so I waited until after treatment. I did like Bon said, I ate what tasted good, kept protein up, gained about 8 pounds which didn't make me happy, but I learned most people on chemo gain weight, due in part to the fantastic anti nausea drugs, and the steroids. So be kind to yourself as you go thru treatment, you can do this, you can fight and regain your health. Good health can be yours again, so do not be discouraged. Hugs to you!

Sloan 15, I take about 6 or 7 turkey tail capsules (1 mg, from fungiperfecti) though Idid read somewhere about someone who took 9 a day. Haven't started chemo yet; my onco isn't crazy about supplements, so I'm not sure what I'll do.

Hey all, checking in here to say hello. I finished 4 rounds of carboplatin with 12 weekly taxols and now have moved on to FECx6 (had one round of that and it kicked my a$).

Made the mistake today of going out to some IBC specific sites on the internet and got really depressed so thought I'd come back here to check in with you people who do not make me nearly as freaked out.

How are you? I love to know that there are some 5+ year survivors here. How about others who are still in active treatment?

-Julie

Thanks Kicks, it's people like you who keep me going. and not wandering around on the internet too much

MoreShoes, welcome to BCO (again?) We're glad you found us.

Congratulations, Traveltext!!!!!

MoreShoes, welcome!

Traveltext, WOOHOO!!! Thanks for the HOPE for those of us in the active treatment phase, dreaming of being able to say "one year" and "two years" and so on....

Thank you. I'm still at the very beginning of this traject. Monday I get a PETscan, then an MRI and Thursday I talk with my surgeon. Unfortunately this is my third time facing cancer and I know how it works. The previous time it was a tumor. Now it's IBC. I'm scared, numb and don't know what to feel.

The previous time this forum helped me through the dark times, That's why I came back, to see a ray of hope.

Thank you for the link, Traveltext.

Is there a list with questions I can ask my surgeon tomorrow? I've done the PETscan and MRI. Tomorrow I get the results and I'll hear what their plan is. I'd like to be prepared, cause this is not a tumor, so it's dealt differently.

Thank you Meadow. I had twice cancer before. 2008 left side, triple negative tumor 2cm. 2012 right side, triple negative tumor 1.5cm. Now it's IBC. I had twice chemo and radiation. I'm sick of fighting and building my life back again. I want to be "normal".