< 5 mm HER2+ IDC...why NOT chemo???

Jill, I'm sorry, this is exactly the dilemma I faced as well.  First onc said no chemo, didn't feel the recurrence risk was high enough and didn't trust the retrospective studies from MD Anderson.  2nd onc said yes, definitely need chemo.  Third onc said he would treat me if it gave me more peace of mind, as the biology of the tumor (HER2+) does play a role.  I finally went to MD Anderson, and they did feel my risk was higher b/c of the HER2+ combined with being  younger; they strongly recommended chemo/Herceptin.   They feel biology of the tumor definitely trumps the size.  Of course this is all based on their own research.  I chose to put much stock into their recommendation b/c I feel they have done the most research on tiny HER2+ tumors.   This is all so very controversial, and it makes it incredibly difficult to make a decision as a patient.  I finally decided I didn't want any regrets ie. finding out a year or two from now that I had metastatic cancer that could not be cured.  I agreed to at least try chemo...with the mindset that if it was just too difficult or I encountered any really bad side effects I would stop and then continue the Herceptin only for the year (Herceptin has risks, for sure, but is much better tolerated than the chemo, and it targets the HER2+ receptor).  

I hope this helps, I totally understand and feel your pain.  You may want to read back through this long thread and read all of the research info presented/debated and the thought process I went through.   

Yay vjm!!!  Great to hear from you!  I'm doing pretty well now, much better than the first two weeks!  I developed a runny nose - got some great suggestions from gals on the TCH thread - vaporizer, saline nasal spray, placing a small amount of vaseline/other moisturizer in the nose.  I started with a bit of baby oil on a Q-tip yesterday a couple times a day, and it seems to be keeping the majority of the sniffles away so far.

You already have signs of neuropathy with one treatment?  I'm doing some supplements to try to keep it at bay.  So far...so good...knock on wood.  It's one of my biggest worries!   I have a call into a local acupuncturist.  I'm thinking it may be worth a try to see if it helps keep my sx managed better next time.  Hope he calls me back soon - excited about trying it!   

What's nebussa?  They put me on Neupogen for 4 days - brought my white counts right up.  I'll be getting it a bit earlier next time to try to prevent them from dropping so far.  You go on the 10K - even walking it is WAY impressive to me.  WOW!  You are doing GREAT!!!   

No significant hair shedding for me yet.  As you know, I used the cold caps for my head, but I'm watching the rest of my body.  Just a tiny bit of extra shedding noted so far.  I think the onslaught is about to start though!   

Huge congrats vjm on finishing the 10K - wow!!!  

Your head shaving party sounds magical!!!  What a great idea!

I'm doing pretty well - just day 1 post 2nd TCH, so it is tough to tell - still on the steroid high.  I did have the D train this morning, but that train has temporarily stopped.  Fever (low grade) has started already.  But energy level still good while on the steroids, so still plugging along.  Tomorrow...well...we'll see and deal!

Best wishes for your 2nd one Friday!!!  

Hey vjm, I was just thinking of posting here to ask YOU how YOU are doing!  I guess you are now day 3 post...hang in there sweetie...I know the ride can be pretty rough...but it will end.  Just not soon enough, LOL!   I wonder what is causing the aching knees?   I hadn't heard of that as a side effect of TCH.  Maybe it's the Herceptin?   Or are you getting neupogen/neulasta?  If so, that can cause bone pain, but taking Claritin can prevent the bone pain from being really bad.  

I am now day 6 post my 2nd TCH.  This 2nd round has been better for me so far - less severe diarrhea/constipation fluctuations.  I really think that probiotic plus drinking prune juice/having prunes on my oatmeal daily is a big help.  I've got thrush AGAIN, lovely.  Doing the old magic mouthwash to keep it under control as best I can.   I started a low-grade fever again as of yesterday; my counts are into "moderate" (Grade III) neutropenia today.  Onc still wants to hold off on Neupogen.  I assume he does not like to give it unless the counts go into Grade IV.  I suspect I'll be there by tomorrow, since nadir for TCH is days 7 to 10.  We'll see! 

I've switched to Herceptin at the lower weekly dose, so I go in for my weekly Herceptin tomorrow.

My worst symptom this round has been again, severe indigestion.  It presents as uncomfortable burping, burning/tightness/pain in my chest (yeah, doc knows...doesn't seem to think it is heart related...make sense...I feel relief when I burp), and nausea.    This is despite taking the max allowable of every med given to me - Zofran, Protonix, magic mouthwash (has Maalox in it), Pepcid, and even a few TUMS when I was desperate and not due for any other med.   I talked to them today, and they are going to double up my Protonix.  Crazy.  I'm not surprised, though, since I had severe reflux PRIOR to chemo.  At one point I had to be on double Nexium and Reglan to stop breakthrough symptoms.   So I am quite hopeful the double Protonix will help.  Hate to do it, but the symptoms just aren't manageable, and I need some relief.  This chemo/dex is doing a number on my GI system, for sure.  I hope I'm not doing any permanent damage to my esophagus!  

Ah well, guess I sound like a complainer.  Can't help it...in the mood to vent!   I feel a little better now just getting it out.   I totally understand the being more emotional.  This stuff takes its toll on ya. 

I may curl up with a movie this afternoon. Let's try to enjoy our couch time!!!   Thinking of you!! 

Yep, lago, saw that.  Grade 2 is the only thing that qualifies me.  I'm definitely on the low end of the scale of risk when it comes to HER2+, but according to MD Anderson, the risk is still high enough to recommend TCH for me.  They estimated my total recurrence risk without TCH ~ 20 - 25%.  Of course this is vastly different from the first oncologist I met with, who said no chemo/Herceptin for me, and estimated my recurrence risk I think around 5 or 10% (memory is starting to go!).

No easy answers for tiny HER2+ patients; ends up being a gut call and what kind of risk you think you can live with, or not.  

vjm, somehow I missed your reply...SORRY!  Yes, Claritin!  It's awesome!  It helps decrease the inflammation associated with the Neupogen/Neulasta shot...and hence the pain.  I have taken it with my Neupogen and have had virtually NO PAIN.   If you take Neulasta, the clinical trial says to take 10 mg loratadine (or Claritin) the day of and 7 days post (b/c Neulasta is long acting).  With neupogen, I just take it every time I get a shot (at least 30 minutes before-hand). 

My reflux finally has calmed down with multiple meds (YAY!), plus I had an endoscopy this morning to make sure there was no severe damage - none - YAY.  So I am on schedule for my next TCH this coming Tuesday.  Oh, and I have decided I'm only going to do 4 as well.  6 just seems like overkill for our size tumor.  So I'm half way, too.  YAY!!!!!!!!!!

I'm going somewhere REALLY fun when this is all over...DH and I are talking about a cruise.  I don't care where, as long as I am far, far away from treatment!  LOL!!!!   We are getting there!