some treatment questions?

jaydub26

posted this to ibcsupport mailing list but thoght I would also post here -I would be grateful for answers to any or all of these questions
 
Background: I have had a recurrence to internal mammary node (initial diagnosis Aug '08 was IBC - breast, axillary and supraclavicular node involvement.  I had complete response at surgery but had had both chemo and radiation before surgery. So was declared in remission/NED in April '09 continued with herceptin til Aug '09).
This node started to cause me pain end of July '09 while I was still on herceptin but recurrence wasn't diagnosed til Ocober '09. I have been told because this recurrence happened so soon after initial treatment the cancer is more likely to continue to recur. They are putting me on navelbine/herceptin until February'10 where they hope to include me in a trial of neratinib vs lapatinib/capecitabine(tykerb/xeloda) if I'm not eligible for the trial they may switch me to just xeloda anyway (tykerb isnt available in New Zealand unless you pay all costs yourself which the drs say is prohibitive so this trial is my best option.)
 
My questions  are these
1. what sort of side effects can I look forward to on the navelbine /herceptin combo
 
2. are there people in this forum  who have had such a recurrence soon after initial treatment who have reached and maintained NED status since. If so what treatment were you on, how soon after initial treatment was the recurrence and how long have you been NED?

Faith316

1.  I have never taken navelbine, but Herceptin caused no ill side effects for me.

2.  My occurence wasn't SOON after initial treatment, it was DURING my initial treatment!

When I was dx with IBC in 6/09, I was still taking Herceptin for my initial dx of IDC.  Although it took til June to make the dx of IBC, I actually had undiagnosed IBC since at least the end of January 09 while I was STILL TAKING radiation and herceptin and a mere 8 weeks after I had finished Taxol.  (Did Adriamycin and Cytoxin before that.)  The reason it took so long to actually diagnosis it as IBC was because every doctor I saw about my swollen hot breast with a rash on it thought it was a side effect from my radiation and that made sense because I was so burnt and blistered, who wouldn't think a rash was just from radiation?  Also, since I was STILL IN ACTIVE TREATMENT, they thought it couldn't possibly be IBC.  But it was. 

When they finally did the punch and excisional biopsy  in June which came back postive for IBC, I had had it for at LEAST 4-5 months.   I was referred to MD Anderson by my local oncologist because he had never had a patient in my situation.  My MDA oncologist stopped the Herceptin and switched me to Tykerb and Xeloda and told me that if it was going to work, we would see evidence of it doing so quickly.  Honestly, after the first dose, I saw improvement in my IBC rash.  My significant other thought it was just wishful thinking on my part, but I really did see some slight improvement.  Three weeks later, the rash was totally gone and it had been REALLY bad.  I went back to MDA after 6 weeks and had ultrasound and mammogram redone and they both showed huge improvement in the skin thickening and swelling.  And, the PET/CT remained clear.  I have now been on the new drugs for nearly 5 months and continue to have clear PET/CT every time I go back to Houston.  My doctor says complete clinical remission.  I stay on the Xeloda until early January and then have my mastectomy.  (The Tykerb I will most likely be on indefinitely -- maybe forever.)

(My cancer history is in my signature line at the bottom of the post.)