Question about Brain Mets

dewey · Regular Joined: 21 Dec 2007 Posts: 21

Hello Everyone! I've been visiting the forum for months now but this is my first post. This is such a useful and friendly place!
My wonderful father had a seizure July 22 this year. Within hours we learned it was caused by brain tumors and he had a mass in his lung. In a few days we learned it was Stage IV NSCLC with multiple brain mets. He had 10 days of whole brain radiation then started a combo of chemo drugs (Cisplatin, Taxotere, & Advastin). We are blessed to have a wonderful and agressive doctor. In September he had an MRI that showed some shrinkage of all spots and no new spots. Because of some complications and basically my panic attacks he also had head ct's in October and November. This week he had a follow up MRI. It was noted that there was significant shrinkage since the September MRI and some spots had completely dissolved.
Now my question! I looked back at the ct reports from October and November. They both say the largest spot is 1.2 cm, the mri from this week says the largest spot is 1.2 cm in diameter. It sounds like at least this one spot is not shrinking since October. It was 2 cm on the September MRI. The doctor was very pleased with the MRI and didn't say anything about this spot. I'm thinking maybe we should do some gamma knife surgery on this spot to make it continue to shrink....does that make sense. We have an appointment Thursday so I will ask our great doc is opinion. Just looking for some advice.

So far Dad has had 5 cycles of chemo the 6th and last has been postponed about 4 weeks now because he became so weak. However he is regaining strength now and the doc wants to get this last chemo in. He says we will then continue Advastin every 3 weeks. He had a ct scan of the chest about 2 months ago after the 4 cycle and it showed a great reduction in the size of the lung mass. We were all excited to hear that.

One last thing...for the past month Dad has become confused several times, said stuff out of his head, memory loss, hearing problems. I was really nervous when this MRI came in because I thought it would be bad news but it wasn't. So the doc says we could be looking at the effects of the WBR treatment or the steriods. He started on four steriods (not sure what size) a day now he is on two and after our appointment it was adjusted to 1 a day. Anyone have experience with WBR? I mean Dad has said some crazy stuff like some times he doesn't know he is at home or he thinks he is supposed to go to work.

I'm sorry this post went so long but it feels so good to talk about this with other people that are experiencing some of the same issues! Thanks so much! I pray everyone hear has a good holiday with their loved ones. Dad's MRI results were our early Christmas present Laughing

!

Dustin

brainman · Posted: Fri Dec 21, 2007 4:04 pm Post subject: Re: Question about Brain Mets

I Dustin, I am very sorry about your father's cancer. At the same time, I rejoice with you over his recent MRI results. It does sound like Christmas started early for your family.

There are at lest two things that might preclude use of the gamma-knife.

First, there are more than just one tumor in his brain. His radiation oncologist will not want to treat just one.

Second, he is already undergoing WBR. Any organ in our bodies can only take so much radiation. WBR usually gives the whole brain close to the maximum allowed rads.

You and your father are in my thoughts and prayers.

Continue to have a very Merry Christmas.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

mommysgirl · Posted: Fri Dec 21, 2007 6:42 pm Post subject: Re: Question about Brain Mets

Hi Dustin
My mom went through 15 WBR treatments for NSCLC with 1 brain met lesion, and she experienced significant problems with vision, memory, hand writing, irritability(to put it nicely), and mood swings. As with your dad my mom was also on steroids, so you really cannot be certain to what extent causes what side effects. The one thing you can be sure of is that radiation kills good brain cells as well as the "bad" ones. I was once told that an MRI of the brian of someone who has had WBR can some times resemble the brain of early alzheimers, so if that tells you anything. His recent results sound very encouraging. I will be praying for you and your dad.
_________________
mommysgirl

My mom's story
http://cancerforums.net/about7278.html

My dad's story
http://cancerforums.net/about8169.html

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1301

Hi Dustin,

Great advice from the other posters, as usual on these boards!

Glad to hear your Dad is showing response and that his oncologist is aggressive.

I'd be the same way as you are about the brain mets. I'm definitely of the "get rid of them" variety. You might want to investigate gamma knife based on only 10 WBR's . I don't know how many met's they will treat with gamma knife. We never dealt with brain mets, so it's hard for me to speak to that subject.

Cisplatin is known to cause hearing loss in a some patients. I believe it is reversible once treatment stops. Memory and vision problems could be from either the WBR or the chemo, but they should clear up prior to the next cycle if they are chemo related. There is a condition known as "chemo brain" which is usually forgetfulness, etc. (My husband got away with murder while claiming chemo-brain at times. LOL)

Hopefully you will get some answers at his next appointment. God bless you for looking after your Dad like this and don't be a stranger to the boards anymore, okay?

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

dewey · Regular Joined: 21 Dec 2007 Posts: 21

Thanks for the posts and words of advice!
Things don't seem to be going so well right now. I noticed it has been almost a month since I posted the original message and in the last paragraph I talked about my dad's confusion. Now his confusion and altered mental state is all we talk about.
Mom called me at 1:30 AM this morning and said dad wouldn't take his meds that he was supposed to take at 10:00 PM. I talked to him on the phone and reassured him that he was supposed to take the meds. Mom called back and said he did but I was already on my way to their house. I spent the night so my mom could get a break and he was up and down all night! He swore that two young blonde boys tried to give him meds and he would not take them because he didn't know them. He said even his nurse (that's my mom but he thought she was a nurse) didn't know who they were.
I'm trying to give an example of what is going on in the faint hope someone may have an answer! Even though I know that is impossible.

Like I had stated he had an MRI in December that showed a lot of shrinkage in his brain mets and even some that no longer appeared. At the time our oncologist said his confusion could be related to the WBRT he received or the steroids.
He is down to 1/2 a steroid every other day now and it has only got worse. I called the doctor that performed the radiation treatment and he actually pulled up the latest MRI (we have some really good docs around here) and called me back. He said he could not see any evidence of damage caused by radiation and he did not think that was the cause of the confusion.
We have an appointment tomorrow with our cancer doctor and I have a ton of questions for him.
Dad is taking avastin and I found a warning posted in 06 about a possible side effect with symptoms that seem to match but it was only in less than 1% of patients taking the drug but I have printed that out for our doctor.

Dad takes Dilantin and Keppra because he had a seizure in the very beginning last July. In December his Dilantin levels were in range.

I'm sorry to ramble on but I walked into the house friday and saw my dad...he would be doing so well if it wasn't for this altered mental state. He looks so much better then he used to. I just prayed since this started that the treatments would give use a few months of quality time at the least. Right now though I'm not sure they did and I really hate that for my dad.
I pray that this is some kind of medication problem that can be fixed...well actually if they could just give me a name for the condition if it can't be fixed maybe I could research the best way to help him deal with it.
Well God Bless everyone going through this struggle of cancer or that has been through this struggle. We just have to be there for our loved ones and sometimes that's all we can do.

dewey · Regular Joined: 21 Dec 2007 Posts: 21

Well our appointment, went ok I guess. They are thinking dad may be suffering from a condition called RPLS has a result of the Avastin he is taking. The half life of Avastin is over 20 days and we are only at day 12 since his last treatment so we are going to have to wait two to three weeks to see if the mental problems clear up. The doc did order a Cat Scan of the chest so we could have an update on how the mass in is lung is working. The doc also agreed to send him to a hearing doctor to see if he good do anything from the damage caused by the radiation to the head. He also agreed to write an order for physical therapy which will be great I believe. Dad seems to have more energy now so I think physical therapy would be good. We also talked about starting Tarceva if and when the mental condition clears and we decide Avastin was to blame. Any way I felt good with the outcome, I knew they couldn't wave a magic wand and fix everything but I was excited to see the care and thought the doc put into the plan from here. So right now we're hoping and praying for the best.
If anyone has experience with RPLS and Avastin let me know.
Thanks!

brainman · Posted: Tue Jan 22, 2008 12:23 pm Post subject: Re: Question about Brain Mets

Hi Dustin, I do not know what RPLS is so I cannot tell you anything about it. I am glad that your father is OK now. I hope he can get some help with his hearing.

As always, your father is in my thoughts and prayers.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

dewey · Regular Joined: 21 Dec 2007 Posts: 21

Dad is 200% better over the past two days. The only thing we did was get rid of the steriods and I reduced his Keppra from 1000mg daily to 500. His mind is so much clearer now, he can carry on a conversation. In fact he will start telling about something that happened and we will so no Dad that all happened in your head you were here the whole time and he just can't believe it. He says things seemed so real. Here's to hoping it continues! We have a ct scan of the chest tomorrow, I'll let you know how it goes.

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1301

Dewey,

Glad to hear the fog is clearing for your Dad. It's scary when these things happen. Good luck on the CT scan.

PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

	Cancer Forums Forum Index -> Lung Cancer Forum	All times are GMT - 5 Hours
Page 1 of 1

A website for discussions about any type of cancer, including lung cancer, breast cancer, mesothelioma, prostate cancer, laryngeal cancer, leukemia, lymphoma, multiple myeloma and others