Forefront of Research for - - -

Hello Birdies,



I have actually received wonderful care at MSK, and feel I can recommend it. For medical oncology, Larry Norton, MD and Cliff Hudis, MD are two stars, but that's unfair in the sense that, I believe at this institute, most are stars. Also, one of our sisters is seeing a woman oncologist Dr. Modi. Since these fine physicians see so many patients, they often recommend one of their colleagues.



Some more info: there is a wait period if not emergent need (this is negotiated by communication with your local oncologist as to your specifics), especially if you are waiting for a specific physician. If emergency, then an opening is worked in via add on or cancellation or to new doctor or maybe even fellow in training with oversight which often gets you to the right place.



MSK has a wonderful breast center where you see their doctors. It is convenient to hotels, and they have arrangements for patients.



MSK is detail oriented, and I found I did not get lost in the shuffle, and was responded to reasonably on followup phone call.



Do they do different then elsewhere? Yes, they would like to think they do, I believe. That is why their reputation is so good. (BTW, I am not affiliated with anyone, just a patient like you who went there, and this is not to lesson MD Anderson Hospital work in any way).



And of course, they offer clinical trials, with on the pulse research clearly not available in my town.

I would return there in a heartbeat if needed, but that's just my experience.



All the best,

Tender

Birdies,

I have been to MD Anderson (6mths this year)...Lets just say my experience was bad start to finish.  But I was in Phase I trials due to poor chemo response.  The bc center would not even see me.  (also took me 3 mths to get a appointment.)  They do a few newer trials but I hate to say not that many for triple negs.  (Her2 is the big deal)The girls I met were getting the same drugs that I could get at home.   As for trials you must have advance disease to take part in 90% of them.  Check their website for trials and also clinicaltrials.gov. It worth the trip to get second opinion but check was available at home first. Bigger does not mean better.  I know someone who has her test ran at MDA but hasntreatment at home.  This way she always has a second opinion.

I have found after 3 cancer center and two were research hospitals that there is standard protocol for Stage I through Stage III that you must complete before anything can be tried outside of their box.  I have completed Adrian/taxotere/cytoxin, Gemzar/Carboplatin & Avastan (this is the new mircle combo! Not for me) Trial for  Aroplatinum.  Last trip they offered Dasatinib(Lukiema drug my local doc got approved to do.) and a new form of taxotere (I can't remember the name)and that was it.  Again you must have advanced disease to do these drugs. Of course they use Abraxane for other mets.   Do your research... be prepared.  And don't stop searching for answers.

Living in hooe.

Hi Stage IV -

Initially, my HMO dismissed my requests for RFA.  (I found out about RFA during internet research - it was NEVER mentioned, let alone offered by my HMO).  I already felt like I had two fights on my hands, bc and my HMO ... 

So, I went to an interventional radiologist (IR) at UCLA (since previously I had a 2nd opinion at their bc clinic, and at that time, I asked him for a referral to the IR, which he did).  At the time the IR agreed to do it, I had 4 chemo-reduced liver mets.  However, once I had the IR done, only 2 could be found!   (I think the 2 smaller ones continued to shrink into oblivion due ot the chemo).  I don't recall the size of the mets, but the biggest was still on the smaller side ... 2 cm or smaller, pre-chemo.

Unfortunately, I was a "cash-pay" which was quite a bit for a CT scan,  ultrasound and appt with the IR.  Even when my HMO used the CT scan from them (I bought it on disk), my HMO would not reimburse me.   They said I would have needed authorization first.

If your tumors are 3 mm and 5 mm, you should definitely qualify for RFA!!   That's well under the maximum size and quantity for RFA!  

What did Stanford say?  I'm guessing you're in Portland ...

PM me if you want additional or more specific info.

Hopefully, the PARP inhibitor clinical trial that I'm on will work .. and my lung met(s) will go away ... Otherwise, I'll be looking for RFA on my lung too!  (Besides my liver, I've already had it on my kidney!) 

CalGal