AC, Cytoxan AFTER I had TCH?

Jean · 07-06-2006, 11:11 PM

Chelle,

When we are dx with bc it is a shock - we are all aware that 1 of 7 will be dx.
But do we ever really believe that one will or could be us? Especially when the woman is so very young. This is a shocking disease becasue at any age NO one is ready or prepared. Top that with running to find information about the disease and then proceed to discover all the research and new meds that are out there this takes much time. You visit top onc. and first believe that of course these men and women are correct, after all this is their profession.
But like everything else in life - whether it is a butcher, baker or candle stick maker - they are human and of course the medical profession will follow protocol for fear of being sued. As Dr. Slamon said - doctors have to practice medicine, it is after all an art and a science. Most important of all and all the women on the site will say the same thing "We must be our own advocates in fighting this disease." The first onc I saw at Cornell was arrogant and refused my request for a FISH test to confirm if I was her2 !
Could you even imagine a dr. saying no? Then I demanded it and told her to do as I requested which took another month. I finally had to fire her and hire a new Dr. who did order the FISH. This all sounds strange and as I have always said the dx. was easy it was the journey that was difficult. If you are an early stager it can almost be worst because you are looked at as if you are just a little bit pregnant - when I heard I had her2 /+++ size of my tumor was not my issue the type and aggressive nature of my cancer was my focus.
You have found this wonderful site which has the most powerful women who dig and search and turn over every stone of information and cutting edge information. So you are in the right place here with a wealth of brillant
women and men. We may have had the bad luck of getting bc - but we also have gained in finding this site. It is a powerful instrument. Would you believe today I had my 3rd chemo trt. and when I met with the onc. that Dr. Slamon referred to me in New Jersey the subject of the TOPO 11 came up
and he said the following, well I hope Dr. Slamon is correct with the TOPO 11
etc. I just looked at him and realized that his ego is amazing - I then asked him do you thing he is wrong, he replied, " well he is brillent and is usually correct," I asked myself then why did you even make this comment or said what you did? He is a great dr. in his own right but, that ego had to surface because he had to take orders from Dr. Slamon. So you see we not only have to deal with the bc itself but the emotions of the professionals who often times do not like to be questioned. The secure ones do not mind questions or time spent to answer or review new research. Much has changed with the internet and some dr. do not appreciate the contact and the information available to their patients. No all the onc. for many have wonderful dr. who will sit down and discuss the most important aspect of their health care. You would not keep anyone whom you are employing who does not treat you, the customer correctly. If your dr. does not treat you fair and correct, fire them and get the medical attention that you should have and deserve to have. If I treated any of my clients in this manner I would be concerned that I would out of business or worse brought up on charges. It will get better because you are aware now and will protect yourself and you will get your questions answered. Even if you have to do the research yourself. Let me know when you hear from Lillie - she is great at returning emails. Wishing you all the best...

Jean

MJo · 07-07-2006, 11:29 AM

Oh Jean, you are so right about doctor egos. I guess you have to have a big ego to take responsibility for human life, but it's not great to be a patient caught in the middle. I haven't had your challenges, but I've heard comments. My surgeon made a sarcastic comment about my oncologist: "Maybe someone out there is smarter than Dr. G----." Then I hear that my surgeon, who is considered one of the best, refuses to be part of the new cancer center. These doctors are humans -- compassionate, spiteful, kind, arrogant -- even insecure... MJO

Jean · 07-07-2006, 12:32 PM

MJOE - so good to hear from you - hope all is going well for you with the radiation...how is the eveing appt. going? Thinking of you...
Yes, ego's are an interesting topic....it is unfortuante that some must engage in a p-----g contest....
But I refuse to join ! Had to chuckle at your close when you describe some of them - does sound like pre-school children!

With all good wishes and prayers.
Jean

Chelee · 07-07-2006, 03:08 PM

Jean, Great post. It is so true that no one thinks this will happen to them. I know I certainly didn't. I have no cancer in my family...I've had check ups...then you get this news and your world is turned upside down in seconds...never to be the same again.

Your SO RIGHT when you say we HAVE to be our own advocates. I learned that the hard way. You want so badly to just trust your onc doc...but I find you HAVE to do your own homework and research as all oncologist have different ideas about what should be done. It gets confusing at times! Its so time consuming just making all your doctors appts, lab work, scans, and you name it. Its like a FULL time job without the pay. Then you ADD all the time online to check out..and research what you have been told...and it doesn't leave one much time to relax and enjoy it seems. There is so much to learn, and know about this dreaded disease.

I can relate to you Jean about the FISH test. They WEREN'T going to do one on me either. I had to PUSH them SEVERAL times till it was done. So I know what you mean. The only difference with my oco is I was told several times they WOULD do the FISH...then I would wait a week or so..and ask them...only to find out it STILL HAD NOT been done. But I finally got them to do it. But one should NOT have to work that hard. The FISH IS important as you know.

Your onc at cornell that flat out told you NO is a bit much. Mine never really say no....they LEAD me on to believe they ARE going to do whatever it is I ask for or need. But then it NEVER happens till I continue to bring it up. So you must of been in SHOCK to hear flat out "No" about your FISH test. Wow!

Also like you...I had to fire my first onc doctor...and now I am on my second one. Which I liked alot at first...but now I am running into alot of problems with this one too. But I have heard others down at this place complaining about many of the same things I am. So its not just me.

Its awful to have to fire your doctor and start all over again. There are some really *awesome* doctors out there that really care. But then there are others that just seem to forget we are even human it seems? They need to STOP and ask themselves if this is how they would treat THEIR own wife, husband, mother, father, brother, sister, or their own childern. (for some of them...I think NOT!) Its those few bad doctors that make it harder on the REALLY GOOD ones...and there ARE plenty of them still...thank goodness. Its just finding them. If you find a good one...they usually AREN'T accepting new patients. (You can't win.)

Jean, I am sure sorry to hear all the nonsense you had to go through to get where your at now. How frustrating to say the least...but thankfully through all that you wound up in the right hands.

One positive thing came out of it.

I sure wish I could change again to a new doctor...but whats bad for me is in my HMO...you are IN what they call a GROUP. These doctors are all connected to one hospital where you would go if need be. You CANNOT go OUT of this group of doctors unless you pay out of pocket which for most of us is impossible and these doctors know it. (Your allowed one 2nd opinion...but you CAN'T use another doctor or hospital.) ARGH!

So even though I fired my first onc...I had to go to one in the same building...they are all friends/peers. We can only change ONCE a year to a new plan. And right now as far as I know its only Kasier and that would not work for us. Been there...done that. Never again.

So I feel stuck. I would like to change doctors again...but not sure it would change a thing at this point? I just don't know why this is happening to me? Its bad enough to have bc...and stage III...but to have doctors that won't give you the time of day is a nightmare. Our health care system needs a complete over haul in my opinion. The bigger the HMO's get...the more control they have over the doctors and the care we get. (I am glad to have insurance...but there has to be some major improvements for us patients.)

Good point you made about if you treated your clients the way some of our doctors treat us that you would be fired. Boy...you got that right. But most these doctors KNOW they are safe when in these HMO's...or so it seems to me.

Wow Jean, that one doctor you mentioned really DID have QUITE the EGO didn't he. With a ego like that...did you get a chance to see if his head fit through the doors he tried to walk through. lol (takes all kinds...huh.)

I haven't gotten to write Lillie yet..but I sure plan too. I am looking forward to it.

Thanks a million Jean.

Chelee

fourboysmom · 07-07-2006, 08:45 PM

Hi Chelee,

I was catching up on reading posts, and came across yours.
Yes, I got T/C/H first , then A/C, then Herceptin alone for a year. I was in a study at Dana farber in Boston. It showed the women who received this combo had powerful results. That T/C/H was strong stuff. It shrunk my tumor from 6cms to 0.3 cm. I then had a mastectomy. I still needed a mastectomy because of alot of calcifications...so There is proof the T/C/H worked. I got the A/C post mastectomy. Had a little trouble with low counts after such cumulative chemo but I feel good now...still getting Herceptin till August.....Good luck! Love, Janet in CT

Jean · 07-08-2006, 11:41 AM

Janet,
What wonderful news to hear that your tumor shank down to such a tiny
size! Great! Great! Happy to hear your results with theTCH treatments.
Also that you continue to progress....keep going...and please keep letting
us know how you are....

All Good Wishes and Prayers,
Jean

Chelee · 07-08-2006, 03:37 PM

Hi Janet, Thank YOU SO MUCH for posting to me. I can't find many people that did the TCH regimen. I have read up on it and it has proven to be a good one. But I much like hearing it from people that have actually been on it like you.

My cancer center were offering me AC and Cytoxan now that I am done with the TCH if I wanted it? Which means I would have to go off herceptin. They missed my point...Its not that I didn't feel TCH wasn't any good...I just wondered why everyone and their brother had AC first?

So you were in a study at Dana Farbar. If I understand this right...you had the TCH BEFORE your mastectomy in order to shrink the tumor...right? Then after your surgery you had the AC followed by herceptin. Sounds like it worked great. I am so glad to hear it worked so well. (I wonder if I SHOULD follow up with AC & Cytoxan like they mentioned to me?) All these decisions are so hard. Thanks again for posting to me.

Chelee