Tumor Isn't Shrinking HER2+

Leslie304

Hi All,

I was diagnosed with IBC in mid-April.  I have had 3 rounds of A/C (every 2 weeks) , 2 rounds of Hercepton/Taxol (every 2 weeks) with weekly Herceptin only in between.  I still have a huge tumor that isn't responding. Onc thinks maybe slight softening but I can tell she's worried.  She brought my case to the tumor board yesterday.  I find out Weds what they think.  Is there anyone out there who had a similar situation where there tumor was slow to respond but they eventually had success shrinking it?  I am not operable at this point and that scares me to death!  Will it every shrink or will they just run out of things to try and I'll have to let this cancer metastisize!  I'm very worried and scared.

Leslie

helena67

Hi,

Just wanted to say sorry to hear about all the stress you are going through. Hopefully the tumor board will come up with a good plan for further treatment. Also, don't hesitate to get a second opinion if you feel that would be needed. Are you treated in a comprehensive cancer center? If not, see if there is one reasonably nearby where you live and get in touch.

Please let us know how things are going.

Hugs, Helena.

Leslie304

Hi Helena,

Thanks for the hugs!  I need 'em.

  I am being treated at Sloan Kettering in NYC.  #1 comprehensive cancer center in the country, BUT the fact that MD Anderson has the IBC clinic makes me wonder if they know things about treating IBC that Sloan doesn't?  I'm curious as to how you came to your decision to go there.

 I cannot imagine that the oncologists don't all have the same information. They just had a huge oncology conference in Florida that they all went to.  They all share information.  As much as I would like to go to Texas for another opinion at their clinic and to make sure I'm getting the best care I wonder if I'll really get those answers even if I go. How will I know.  This is a business for these hospitals too and they try to reel you in.  It's not JUST about the healthcare unfortunately. A lot of it becomes a sales pitch.  Living in NJ and traveling to TX would be difficult so it's a tough decision. 

I will have to come to that decision soon if my tumor doesn't start to shrink!  I'll be starting to panic!  It's all so overwhelming and confusing and hard to decide.  I did some pretty irrational things upon being diagnosed.  Like change my diet completely which caused me to lose way too much weight. I ordered expensive supplements from a nutritionist, I made expensive phone calls to natureopathic clinics.  I freaked basically.  

This is so hard.  I wish I could just feel confident that if I follow dr's orders I will be cured but it's not that simple.  They can't even tell me I'll be a candidate for surgery yet. I'm worried

Leslie

ameron

Gosh I'm sorry to hear your news.  I'm very similar to you.  I had a 12cm x 7cm tumor. Diag in May.  Have had 4 rounds of DD AC.  I'm  ER-, HER2+. My tumor has shrunk to about 75 % or so of its original size.  My oncol mentioned he was at the Conference as well and DD AC followed by Taxol and Herceptin was the confirmed course of most preferred treatments at the convention.  He also mentioned two other things that may provide hope for you.  He said its not uncommon for tumors that don't appear to shrink or at least don't shrink much...that when they do go in and operate they find the tumor is dead/necroic tissue and the cancer is dead in it. (He put it a bit more professionally than my explanation). He also said in my case that while it was great I was making progress with tumor shrinking...."I haven't even gotten to the good stuff yet". Meaning he expects the TH to be very effective as well on the tumor size. I haven't researched MDA enough to know what they are doing there..I hope this info helps a bit.

Ameron 

helena67

Hi again,

I agree with you that Sloan Kettering should be a very good place, maybe one of the best. The tumor board should come up with a good recommendation. Even though it is tempting, I would recommend to NOT use all these supplements during this phase of your treatment. A lot of that stuff has not been studied and it may interfere with the chemo. Hang in and wait and see what they say on Wednesday. And just like Ameron says, it is possible that they can make the tumor operable even though it looks the same visually. I had a large tumor too but the surgery was in fact radical (I remember this surprised me back then).

Best, Helena.

helena67

Hi,

Just wanted to say that I hope that things have been going well for you lately. Did you get the feeling that the tumor board came up with a good plan?

Best wishes,

Helena.