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poggie

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I'm sorry to bother everyone again. We got more bad news yesterday. My mother in law's MRI of the brain came back with at least two mets. This wasn't picked up on either CT or PET scan. As a result, she is no longer a canidate for the other clinical trial that she had hoped to participate in.

The doctor always refers to the cancer as a "lesion". I don't want to sound dumb but is that the same as a tumor?

The other thing is that we asked him what type of cancer it is? He said that they are getting away from giving cancer a "name" besides NSCLC. If he had to, he would call it "undifferentiated". He also refered to her cancer as "primitive".

The MRI showed two lesions in the brain that are 4 mm is size. The plan right now is to start chemo (carbo and taxol) tomorrow. In 21 days another round of chemo. After that, he wants another MRI of the brain. Depending on what that shows, she may continue with the same chemo, different chemo or radiation.

After talking to the doctor yesterday, I felt a little at peace. Just knowing that SOMETHING is going to start. Later last night, I talked to a neighbor. She is a radiation tech at another hosptial. She asked about my mil. When she heard about the lesions in the brain, she said that isn't good at all. She said that we need to be sure to make this Christmas special~~for my 3 girls as well as my mil because this will probably be her last Christmas with us. My heart sank again.

My mother in law is not in any pain and has no sign of cancer beside a cough that some times nags her.

What should we expect with the chemo tomorrow? She is going to have a port a cath put in first.

I've asked the doctor to give us a life expectancy. His response is always, let's wait and see how she responds to the treatment. Any ideas?

Thanks!

71 year old mother in law~~stage I breast cancer 1989 right side mastectomy but no chemo or radiation

diagnosed Oct'03 NSCLC right lung

pos. needle biopsy Nov'03 in one lymph node right side near neck

mets in two places of the spine Dec'03

possible mets in right hip Dec'03

4 mm mets in brainDec03

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I am sorry for the news on the brain mets. Many folks are successfully treated for brain mets, so please do not lose hope.

When you have a physician who will not tell you what type of tumor you have the way you find out is to obtain a copy of the Pathology report from the hospital or clinic where the tumor cells were tested.

If you do not know what cell type of cancer it is you will not know what OTHER clinical trials for which your Mother qualifies. And I would have to disagree with this Doctor's statement that they are getting away from calling it anything other than NSCLC. In my opinion I think you have been mislead. They are actually going into even greater detail, with discussion of subgroups among the main histologies.

The are a few things about having lung cancer that I know for sure: 1. You don't want to develop pnuemonia at any point in your life if you have lung cancer. 2. Educate yourself about the subject. Things are much less scary when you know what to expect. 3. If you Doctor won't answer your questions find another Doctor immediately. And tell him/her WHY you're firing them.

The thing with having lung cancer is that it requires us to fight. And that fight is best put forward when we have some knowledge of the subject, and we care enough about the life to be saved to put ourselves out there and be part of the fight.

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Chemotherapy does not usually cross the blood-brain barrier. Why isn't your MIL's brain mets being treated with Gamma Knife, Radiation? Why are they waiting so long to treat the brain mets? Where is she being evaluated? It doesn't sound like she is being seen at a Comprehensive Cancer Center.

Fay A.

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1.) Please re-read Fay's post above TEN times today, and TEN times EVERY day if necessary.

2.) With the reality of LC in your life, and/or in your family, you must learn to avoid NEGATIVE people/"friends"/ professionals like they were the "plague"...because they ARE!! If negativism infects a person, it frequently becomes a self-fulfilling prophecy.

3.) If in the situation you described, we'd be on the phone getting a STAT appointment with a Neurosurgeon for their eval of the brain mets. Simultaneously, we'd get an appointment with the nearest IMRT center, in case the Neurosurgeon feels that's be the better way to go in getting rid of the mets. Whether whacked by a scalpel or IMRT, a relatively short course of low-dose chemo may also be given to chase any micro-mets and/or as a rad-sensitizer.

4.) And, unless your current Oncologist can quickly get onboard with a more pro-active, informative, & conscientious approach, including happily helping with the referrals mentioned above, they'd be "Yesterday's News" in a N.Y. second.

5.) If you prefer to pursue a brighter "forecast" than the GLOOM & DOOM scenario provided by the rad tech, put your wholehearted energies into

getting the BEST treatment available, NOW. It's up to the person/family battling cancer to MAKE this happen and that takes DETERMINATION.

Only God knows how many Christmases any one will have...and He ain't telling! So, get busy & Press On!

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It will be one year ago next week that we discovered that my father had brain mets (three). We were upset, but not devistated. Why? Because thanks to this message board and a woman named Kerry who shared her fathers battle against this disease, we had a game plan...in all honesty, after all the research that I did, and my sister did-we were prepared for the brain mets.

To us it wasn't a matter of IF he would develop them, but rather WHEN. Maybe that sounds negative, but it was this attitude that prepared us for them.

Kerry had shared with the board the procedure that Fay mentioned above. Gamma Knife. As soon as I read Kerry's posts regarding Gamma Knife I knew that when the time came, this would be what we would investigate first. Also knowing that if the Gamma knife were not possible than whole brain radiation would take care of things.

Daddy had the Gamma knife last January, and it was a very non-invasive procedure. It is a highly concentrated radiation that is aimed directly at the tumors, killing them in one treatment. It leaves the healthy tissue untouched. The number and size and even shape of the tumors can be determining factors as to whether someone qualifies for this high tech treatment. But as I said, and so did the others who have answered your post, whole brain radiation is also successful in treating brain mets, and we have members here who have experience with it.

As far as your neighbors comments, I would tell her that you make every holiday special, and will continue to do so every year. Being a radiation tech has made her believe that she can see the future-this is not the type of attitude that I would want my father to be subjected to (or my family either, for that matter), but I am sure that her attitude is more of a way for her to protect herself than anything else. Maybe she feels she could better handle the times where a patient takes a turn for the worst (thus she is not able to help them) by expecting it, but she is wrong.

Look, I'm not gonna say she should have responded to the brain mets news like its good news, but it is something that can be handled. Just a hurdle to jump. I've said it so many times before, but I will repeat it as much as I have to: in order to fight this disease, apart from the medical knowledge of the professionals, we too must seek out information. Knowledge is power-and the right attitude works GREATLY in a persons ability to fight this disease and to tolerate the treatments needed to help the fight. When a development-such as brain mets-comes up, it must be approached as a hurdle that you must get past. Whether you jump it, walk around it, or crawl under it-you can get past it!

Please let us know what happens, and don't give up. If your mother-in-law feels pretty good, you said that she has no signs from the cancer except a cough that sometimes nags her- that is a very good sign!!! RUN WITH IT!!!

:D

I hope this was of some help.

Take care, and keep us posted. Deb

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Poggie,

It is so important to know the type of cancer your MIL has. It makes a world of difference in the options that are available to you. If this doctor isn't comfortable defining it, then find one who is. To me, it is utter laziness to not find out.

Also, I think it is great that your MIL is starting chemo. However, chemo does not cross the blood brain barrier. When my husband was first diagnosed we had an MRI done and were told that if he had mets it wasn't a death sentence, but they wanted to know because they would need to treat him with radiation or some other form of treatment for the brain mets prior to starting the chemo. Once radiation is performed on the brain, it breaches the barrier and chemo can enter the brain, but if I understand it correctly just doing chemo alone will do nothing to decrease the brain mets.

I would highly suggest getting additional opinions.

I will be praying for you and your MIL and family.

Carleen

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Thank you to everyone that has responded to my questions. My mother in law had her first chemo treatment today. I'm anxious for them to get back home to talk to her. I'm not sure exactly what we should expect as far as side effects/problems go.

I am going to talk to her about calling the doctor again to find out exactly what kind of cancer it is. I did a quick search today of the internet for "undifferentiated" "lung cancer" and it didn't answer most of my questions.

My mother in law is going to the U of Chicago. From what I've read, it's supposed to be one of the best treatment facilities in the US. I know from personal experience that "good" hospitals, just like "good" doctors still make mistakes. Now, I'm starting to wonder. Prior to going there (she started about the second week of Nov) she was being given the run around with the doctors here in the suburbs since she had the X-ray in Sept. In the month that she's been at U of C, she's seen oncology, had another CT, thorasic surgeon, needle biopsy, MRI of the brain and now chemo.

Right now, the treatment plan is to have chemo today and again in 21 days. After that, they will do another MRI. If they stayed the same or changed for the worst, they will do radiation. If they're getting smaller, they will continue with the chemo. The doctor did say that there are two treatment options. One as I said above and the other to do radiation first and then chemo. My mother in law opted to have the chemo first. I think that part of it is that she feels that she's waited around a few months and wants to get something going to kill the cancer floating around in her body.

I appreciate the help!

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My Dad is at U of Chgo. I had to fight them to get them to do the rad. first to his met to brain. He was orginally diagnosed with the met to brain at the Mayo Clinic. and they EXPRESSLY told me that chemo will not shrink the brain met bc it will not cross the blood brain barrier. (Only 25% see shrinkage of a brain met for 4 months only) SO, they were pretty adament about demanding that the U of Chicago protect the brain first because "who the heck cares if you got a golf ball in your lung if you have a dime in your head that will kill you."

Anyway, the Mayo Clinic said the U of Chicago is chemo biased because they are research study biased (because they are a teaching hospital and need subjects. ) And that clouds their judgement on the rad vrs chemo decision. I swear to good that is an exact quote from the Mayo Clinic in Rochester Minnesota. The doctor pretty much pleaded with me to demand the doctor in Chicago do the Rad first because he was so concerned.

My dad sounds like he is on the same plan as you (maybe just not the chemicals). 1 dose, 21 day off for 6 treatments. He was convinced that the chemo should have been done first, but I threw a fit with the doctor and had the two doctors (Mayo Clinic vrs U of Chicago) duke it out first amoungst themselves. I guess the Mayo one because he wound up going with the Rad first. And honestly, it gave him time to accept the situation and the rad seemed to have shrunk the brain one.

Anyway, I don't know if what I said matters really, just I would get a second oppinion. Actually, I think it is pretty much neccessary regardless of what you think of your doctors.

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