Chemotherapy for IBC

concernhubby

My 37 y/o wife was just diagnosed with stage IV IBC.  She is still too shocked and depressed to get on to these forums.  I appreciate everyone sharing their stories as it gives us hope and strength to get through this.  We are starting with chemo next week, for some reason her onco wants to try just taxol first without the adriamycin or cytoxan.  I was hoping to learn what everyone had received for chemo and were they able to achieve NED the first go around?

ibcmets

Concernhubby,

Sorry to hear about your wife having ibc.  I was diagnosed 6/09 ibc with bone metastasis, stage IV from the get go.  It is quite a shock.  I know every stage IV person is treated individually as far as treatments.  My onc knew how aggressive this is.  I immediately went through all 3 chemos at the same time, in fact the same day.  Once every 3 weeks I had adriamyacin, taxotere & cytoxin.  They wanted to be aggressive.  I also started Zometa for the spinal bone mets I had, but had to have this one on a different week from the chemo as it was too much.  I went through 8 months of chemo and had a bi-lateral mastecomy a year after chemo. 

My scans have been clean 6 months after I had the surgery.  I'm almost 4 years out now and doing well.  I hope your wife does well in treatment.  She's going to need a lot of support and glad she has you.  www.ibcsupport.org has some more info on ibc as well as this thread.

Hang in there.  Wishing you both the best going through this.  Ask whatever questions you need here.  There are quite a few of us that will gladly offer you support and information.

Terri

concernhubby

Thank you so much for sharing your experience.  8 months must have been tough.  Did you have disease in both breasts necessitating bilateral mastectomy?  Did you have any lymph nodes or muscles removed?  Did you not get radiation afterwards?

Keep up the good work!

ibcmets

Concerned hubby,

I did not have bc in other breast just chose to get rid of them both because I did not want to go through treatment one day for the other breast.  Due to stage IV, I did not have lymph nodes removed because it had already spread to the bones and I did not have muscles removed.  Maybe due to the surgery & chemo, radiation was not recommended for me.  I hear they are not removing the muscles for mastectomies like they used to.  It may depend on where the cancer is.  If they have a chance for cure, (under stage IV) they usually do all 3 chemo, surgery & radiation.

Due to being ER+, I'm on Femara & Zometa still for the bone mets.

Terri

IrishWendy

I was exactly in your situation..  IBC with bone mets in spine.. was also in some nodes..my surgeon wouldnt do surgery.. My first pet looked great.. my onc then put me on hormon rx arimdex.. didn;t work..then shots of fultvesant ..didn't work..now on Doxcil IV was on 1/mo..he's moved it up to1/3 weeks..We'll see.. I'm wondering now if I should of had surgery back in August when my Pet was so good.  Always doubts..Where were u treated ifyou don;t mind my asking.

ibcmets

IrishWendy,

My oncology is in the East Bay of California at Valley Oncology in Pleasanton.    I see Dr. Sawhney.  They keep up with latest treatments, have a tumor board of doctors going over recommended treatments  & associate with UCSF in San Francisco.

I had my surgery from Dr. Wynn & Dr. Wotowick at San Ramon Medical Center in San Ramon Ca. I had no problems with surgery and liked their approach.

Terri