IBC and IDC and triple negative

I am IBC, IDC and triple negative.  I have only just started treatment, so don't have much to tell you.  I started on Ixempra and Xeloda, but couldn't tolerate the Xeloda.  I had two rounds of Ixempra and the skin mets were still spreading.  At that point, I went down to MD Anderson.  The doc there put me on weekly Taxol and Avastin.  I have had two of those so far, doing my third tomorrow.  The Taxol/Avastin has helped more than the Ixempra.  I think the three weeks apart treatment with Ixempra was too far apart, it allowed the skin mets to grow in between treatments.  I'll see what the oncologist says tomorrow, but visually it seems quite a lot better to me.

Hi Deb, found you over here and just wanted to touch base.  I am still very sick from all of my issues.  I am done with the vanco for now, but I think the plueral effusions or something makes me sick.  I get nasuaus once a day.  I am still waiting for physical thereapy to come help me learn how to climb stairs again.  I am on Gemzar now and still trying to figure out SEs.  they are lowering my dose because my platlet count keeps tanking.  When I was on taxol it did very well for my ibc.  My boob almost looked normal again.  I long for those days.

Hi Twinkied and Lindaa,

Sorry haven't been on here in awhile.  Dealing with weekly chemo and working etc.  Twinkied - Zeloda made me very, very dizzy - I couldn't hardly stand up.  It also dropped my bp down dangerously low.  I tried a smaller dose of it, but it just was awful for me.  Taxol has done a better job than the Ixempra was doing for me, but I have only had one round (3 weekly doses).  I am on a two week break and start again on my second round (another 3 weekly doses) next week.  A lot of my rash is now just discolored skin (brown instead of red). There is one area at the top of my chest that is still a little red.  I think the Taxol will work in the long run (hopefully).  Your story sounds a lot like mine and I keep wondering how on earth the IBC could have started so soon after finishing initial treatment.  I keep wondering if, in some way, it was caused by the treatment (trauma to the skin from radiation or surgery let it out into the blood stream) or something like that.  I know it can't be proven - but I wonder about it everyday.  It makes me very nervous to go for a mastectomy and I don't know if I can even do more radiation at this stage. 

Lindaa - so sorry you are having such an awful time of things.  You really seem to have gone through the mill with all of this.  Have you had a mastectomy yet?

Deb

Hi twinkied,

I am not IBC but triple negative, large tumor.  Mother that passed away at early age from breast cancer.  I constantly live in fear as most of us do.  Like i mentioned have never had pet scan or breast mri.  I also has some red spots that would come and go.  Some back/rib pain can't put my finger right on it.  I have also contacted University of Pa. as i understand from these boards their is a female oncologist that studies triple negative.  Not sure which is my best option.  I have a friend that lives about 3 miles from Fox Chase so i have stayed with her on past visits.  My Dr. mostly goes by blood work and i don't know if i am 100% comfortable with that.  Where do you actually receive your chemo treatments?  When is your surgery and are you having it at Fox Chase?  I truely feel blessed to have all the knowledge of these boards available to us.  Please let this 3rd treatment respond for you....how are you mentally handling all of this, always keep all my breast cancer sisters in my prayers and beg for a cure!!!!

Thanks so much for your insight...

Hope

twinkied,

Thank heavens it appears the treatment plan is working in your favor.  I went to Fox Chase when first diagnosed and they suggested a lumpectomy. Not for me i wanted both off, prior to cancer i was already on mamos and ultra sounds every six months (dense breasts) and irregular cells  in the left breast not cancer but not normal cells either.  Then i went down after starting treatment and oncologist said she may have done some things different but would not state what because there was no since in looking back. Both times i was not overly impressed however i have never met Dr.C who seems to have excellent ratings. Right about now moving forward would be my greatest chance of reoccurnce with triple neg. What type of surgery will you be having done when it is time. I did get an appointment @ University of PA.  Dr. completed ALL his medical education at John Hopkins so i am comfortable with that.  When you made an appointment with Dr.C did he/they schedule for testing that day at Fox Chase?  I wish i did not worry as much, i do yoga and some outside support, go to the gym.  Probably because of my mom passing away in hospice and brain/breast/lung cancer fear and anxiety takes over as my children are in grade school.  I actually handled the 19 chemo treatments well it was after i finished the sky opened up and reality set in.  No hair no breasts, no energy.  I think that was the hardes part even today i envy all those breasts that come out in the summer time.  O.K. enough of my complaining!!! Thanks for listening most people don't get it until you are on this journey.  May you continue to feel good and be showered with blessings.

Hope

twinkied,

My appointment is not until the end of May @ Un.of PA. I am usually stressed but manage to get through the day and even some good days.  Actually have done alot since being diagnosed.  Seems as though always waiting for the shoe to drop.  I may make an appointment with Dr. C and go from there.  Like i mentioned my God Child is just arount the corner so i can always visit with an old friend as well. Fox Chase excepts my insurance on both visits it was only $30.00 but was never asked to do additional testing. Thanks for all your advice.

Take Care,

Hope

Ladies, although my profile shows ER+/PR+, they are so faint (less than 5%), my onco and Dr. C both agreed I'm a TN and have been treated as such.  I started my chemo late Dec. with DD AC every other weeks, after 3 rounds, my mass only shrunk by less than 0.5cm.  My onco switched me to weekly Carboplatin and Taxol, mid way thru this new regimen, PET/CT showed good progress, the size and SUV has been reduced a lot, but the mass has not changed much (even till now).  I understand everyone has different responses to chemo...

Twinkied: I'm very curious to learn more in details the xeloda/radiation treatment you are under now.  Can you share that?  I've gone to Dr. C and he has offered that as an option for my next step should the mass doesn't shrink.  To hear you have made progress with this treatment is very encouraging.  When will you be good for surgery?  Will you be getting more radiation after surgery?

Thanks,

Leslie

Hi Twinkied,

Thank you so much for the prompt response!  And, congrats to your success so far.  How long was the radiation treatment, once or twice a day?  And, was 66 Gy total the original plan?  I understand you had to cut it short.  You don't need to take Xeloda anymore?  It sounds good to switch the radiation and surgery around.

Hi Twinkied,

Thank you so much!  How long was the whole treatment?  4 weeks?  50.4 may mean the total radiation you've received so far, but I don't know.  Sorry to hear the skin issue, does it hurt a lot?  Hope you'll heal soon.  Is the purpose of your next follow up appointment to check your readiness for surgery?  Sorry for all the questions.  How much did your lumps shrink?  It is just so encouraging to hear the treatment works for you.

Thanks,

Leslie

Hi Twinkied,

Bless your heart!  Great that you're healing fast!  I still have 2 more wks of Carboplatin and Taxol, my onco has not switched the treatment even though my mass has not shrunk.  I'll have PET and MRI soon and will decide the next course of treatment pending on test results. 

Hope you will get to do surgery soon and put this all behind you!

Thanks,

Leslie

I was diagnosed with a right inflammatory breast cancer 8/2007, (it was infiltrating ductal carcinoma; grade III, ER/PR, HER2/neu negative, positive axillary lymph node). I also had a lump of 1.5 cm contralateral tumor was T1 N1. I received neoadjuvant chemo with Taxol for 12 weeks and fluorouracil, etoposide, and cisplatin for 4 weeks. I had a double mastectomy 3/24/2008. After the surgery, I received 6 weeks of radiation once a day. I completed treatment June 2008. I am NED.

Terry Arnold