brain mets - loss continues

hezzy · 08-12-2009, 04:54 PM

Today I couldn't get over the responce my ONC gave about my brain radiation and the tumors.
He told me I wasn't staying positive and that I don't need to think of the negitive.
He said he wouldn't discuss drugs because there are no drugs that can cross the brain barrier, he said I shouldn't even think of surgery till I know whether or not the radiation is working, but that would be six more weeks after radiation (ends 28th this month) is done before they know ... than he will talk other options.

I wanted to scream I couldn't believe he wouldn't even speak of anything with me, and said that I have no other options other than radiation because of the brain barrier. I had written down drugs (that are said to pass) and told him and he wouldn't even look at them he told me I shouldn't bother. I need to stay positive.

I don't know how to re-act to an ONC telling me such things ... has anyone ever dealt with this? I'm getting another opinion and I hope it makes a huge difference. I'm so scared I'm going to find another ONC who thinks the same thing .... im lost and scared
heather

chrisy · 08-12-2009, 05:33 PM

Hezzy,

There are other oncologists who may be more on the cutting edge so to speak - and who would at least give you a better answer than "you shouldn't even bother". How ironic he also thinks YOU're not being positive! He certainly isn't helping any.

He may be saying that because he believes the radiation will work, and see your desire to know all your options as "giving up" on the radiation before you even know the results. Either way, he is not correct in the statement "nothing crosses the BBB".

You should stay positive - radiation can be very effective and may work very well for you. I'm not an expert of course, but I'd have to agree you wouldn't contemplate surgery before knowing if the radiation was successful.

Given your location, you may not have a lot of options locally for top notch oncologists - but you really should get a second (or third or whatever!) opinion at a comprehensive cancer center, preferably with a doctor who specializes in breast cancer or brain mets from that. Possibly U of I in Champaign, but definitely Chicago or Indianapolis have outstanding docs specializing in these areas and on the cutting edge. I know Chicago or Indianapolis are a bit of a trip for you but are definitely "within reach" for a consultation. You may still be able to implement treatment recommendations locally (although its best when your oncologist is willing to play nicely).

It's super important that you trust the people on your team...and don't forget, it IS YOUR team. You deserve to fill it with people you believe are fighting for you and accept you as an active participant in your treatment if that is what you want.

hezzy · 08-12-2009, 06:47 PM

Thank you so much !!! I was hoping and thinking that I wasn't over acting. I am so looking to a new ONC I think it will make a difference.
I saw you posted the U of I. Do the Universities do these kinds of things ... I go to Champaign now for everything and thats where the U of I is at.
I am looking into everyone near first, after that Chicago and Indy aren't far enough to keep me away. Anything I can do to keep fighting

dchips1 · 08-12-2009, 07:14 PM

Are you still on herceptin? Check the main forumn there are lots of posts about brain mets. Can you find someone who could gamma knife or cyberknife the spots. Their are drugs that can help the radiation if you choose the route for whole brain radiation. I stayed on the herceptin "supposably" radiation does break the BBB for a while. Tykerb is an oral drug as well. I am not an expert just have had WBR and 2 gammaknifes. But I had 6 lesions and the largest was on my brain stem.....Just remember talk, fight, go to other DR's talk to the men and women hear, there is a ton of info. You can even type in brain mets in the search bar.

Good Luck to you, be your own advocate!! Or if you need reinforcement bring someone and the info from these boards to ready yourself for the next Battle in your journey!!!

Darita

08-12-2009, 08:17 PM

you need to go to a National Cancer Institute Comprehensive Cancer Center asap, best treatments, cutting edge, clinical trials, etc. Call tomorrow and tell them the urgency, or get a doctor you know and trust to get you in. There are 2 in Illinois and 2 in Indiana, below:

University of Chicago (Chicago)
Tel: (773) 702-6180

Northwestern University (Chicago)
Tel: (312) 908-5250

Indiana University (Indianapolis)
Tel: (317) 278-0070

Purdue University (West Lafayette, Indiana)
Tel: (765) 494-9129

ElaineM · 08-12-2009, 09:00 PM

I vote for getting a second opinion !!!!!!! Definitely !!!!
There are drugs for Her2 positive breast cancer patients that pass the blood brain barrier. One of them is Tykerb (Lapatinib). Good luck and good health to you !!

Sheila · 08-13-2009, 04:32 AM

Hezzy
I agree on getting another opinion...seeing that you live in Paxton, are you going to Carle or Mercy in Champaign? My Dad grew up in Paxton/Rantoul and I have a lot of family still there...that is "home" for the Brown Family...oh and Penfield too. I would definately go to Chicago and get another opinion...although I do know they have a Gamma Knife center in Bloomington. I wonder sometimes what these Dr's are thinking, and then saying things like that to you....at the least, get a consult, you deserve the best treatment, after all, this is your life!

Joan M · 08-13-2009, 08:52 AM

Hezzy,

I'm sorry that your onc was rude, and it would serve you well to get another opinion and even change oncs to someone more understanding of the stress that bc patients are under.

This is a great website for HER2+ bc and I'm glad you discovered it.

I had one brain met discovered in October. It was almost 3 cm. It was removed surgically, and then I had five shots of radiation to the tumor bed with stereotatic radiotherapy (SRT).

I'm only on Herceptin since I don't have any mets elsewhere and the brain tumor was taken out. However, Tykerb (which is an antibody like Herceptin), is supposed to cross the blood brain barrier, and there's also Temodar, a chemo drug. Although it wasn't developed specifically for brain mets.

I'm not clear on whether you are having whole brain radiation. It seems that you are. And I'm unclear about whether the tumors are in places where it would be hard to remove surgically. After radiation, are they considering removing all the tumors surgically that don't disappear?

There is some basic information on the home page under the Metastatsis link (along the top). You can look specifically at the sections, Whole Brain Radiation Therapy, Whole Brain Radiation, Gammaknife, Cyberknife, and IMRT.

Also, other women and men on the board have dealt with bc brain mets and they can also provide support.

Joan

tricia keegan · 08-13-2009, 09:48 AM

Hezzy,

I haven't had brain mets but agree another opinion is definatly worthwhile. I don't think you're over reacting either as I would have been just as upset and angry with that unhelpful response!

Nancy L · 08-13-2009, 09:58 AM

Tykerb definitely passes the blood brain barrier and it has been found to be very effective. But it is expensive---about $3K a month. Could that be the reason he has mentioned it to you? You need to find a way to get yourself seen right away by a breast cancer specialist, preferably one that is up on all treatments and resources for Her2+ breast cancer. I have found that general oncologists are usually not a good resource for advanced or metastatic HER2+ breast cancer patients.

Best of luck.

suzan w · 08-13-2009, 09:11 PM

2nd opinion...yes scream at doctor...YES!!!

jones7676 · 08-14-2009, 09:26 PM

I highly recommend you get another opinion...as mentioned in the message from Joan I agree with her that there are several options you have.

Try to think positive! I'll be thinking of you.

Believe51 · 08-14-2009, 10:06 PM

Echo the advice of a second opinion because I know for sure that there are drugs and procedures that allow us to control brain mets. My husband has been controlling them for over 2 years. I have a list of drugs that are being studied just for this reason but I am sitting and cannot get to my notes. Do not leave out these studies because these drugs will all have their place on the lists of future options. Hang in there because with time and education you will not feel so scared and hope will fill those voids.>>Believe51

PS: I will pull a couple of important research and posts that will help ease your mind. I just need time, my hands are quite full at the moment.

yankeebikachic · 08-15-2009, 04:20 AM

I would get a 2nd opinion and try to remain stress free as possible. The radiation has worked for many here on this site.
Also, I just read the book , "AntiCancer" and highly recommend you get your hands on it and read it. Written by someone who's brain cancer returned and his a dr himself. Very informative read.
Beth

yankeebikachic · 08-15-2009, 04:22 AM

I agree with you Nancy, as you can see I fired my general onc and left for more specialized care after he refused to give me Tykerb. My new onc applauded my knowledge and immediately put my on Ty.
Beth

Brenda_D · 08-15-2009, 05:57 AM

I have to wonder if you are in an HMO and the onc is being pressured not to give you Tykerb?

CourtneyL · 08-17-2009, 04:06 PM

Wow, I can't believe your doc said that. I would drop him like a hot rock in favor of someone more informed. There are most definitely drugs that cross the blood brain barrier - I'm on two of them - Tykerb and Xeloda. While Tykerb hasn't been proven to be too effective by itself, in combination with Xeloda, the literature suggests that the combo can be effective in controlling brain mets.

Another suggestion for a second opinion is the Block Center for Integrative Cancer Care in Evanston, IL. I met Dr. Block a few weeks ago and he is incredibly progressive in his treatment of cancer.

I think it is so helpful to have medical practitioners on our side who are willing to think outside the box. I hope and pray that you will find someone who will champion your cause and will not be so narrow-minded in their approach to treating your brain mets. These things can be treated and you can go on to lead a normal life. I was diagnosed with brain mets last December and I am doing well and going strong today. I pray that the same will be true for you. You will be in my thoughts and prayers.

pattyz · 08-23-2009, 12:37 AM

oh Heather, I wrote a long post to you and now its gone.

I agree with those who replied to you! Go get new onc and those opinions!!!!

Except for the urgent need for a breast cancer 'specilist'. My own onc is a generalist and my very own whom I totally trust and respect. He LISTENS to me. I have had brain mets totalling 22 in number over the past 7 yrs. It is he who has WORKED with me.

Cancer is now in spinal fluid. "LEPTO" is about as 'end stage' as you can get...

I'm giving you a small 'gift' of sorts. A web page that was not available to us who needed it until just a few yrs. ago: BrainMetsBC.org

I truly hope it will comfort and inform you as it now has for so many like us in need.

big hugs with much hope,
XOXOXOXOXpattyz