Not sure what to think

[Lesleykay21]

So my dad had his brain MRI today and they found a spot the size of a pea that had gone there- it's in a dormant area of the brain. They are going to radiate on the spot and the doctor felt confident in being able to make it go away . I still feel like this is not good. Isn't it just going to come back since it's now metasisized there? I feel lost. Has anyone got radiation on the brain with good results? 😔

[Ruthie1950]

I'm sorry to hear you and your Dad are going through this. Praying for you all.

[ThePurplePlace]

Hi,

When I was first diagnosed 3/27/15 with Stage IV NSCLC I also had one small Brain Met - it is fairly common for Lung Cancer to spread to the brain (and sometimes others areas). For me it was actually the brain tumor that caused the symptoms that sent me to my doctor and then off for a CT Scan. Once they found the brain met, I was hospitalized, as it caused significantly swelling and within two days, I started to have issues with my speech and my right arm/hand (the tumor was on the left). That next week I went through all kinds of testing and biopsies and that's when I Learned that my Primary cancer was Lung Cancer and the brain tumor was a met -- I also had a Pulmonary Embolism, but had absolutely NO chest symptoms? My brain tumor was treated first (very successfully in May of 2015) with Stereotactic Radiation. It worked perfectly and I have not had an recurrence.

So, long story short, YES, it's fairly common for this to happen and Radiation is the standard treatment and most often very successful. Will it ever come back? No one can say for sure, but happily mine has not and we are getting close to two years since it was found and treated. I'm still in treatment for the Lung Cancer and do have routine MRI's on my Brain and CT Scans for my Lung Tumor -- currently I am stable and doing well!!

I would absolutely have the "Radiation" done -- you'll likely hear from many others with Lung Cancer that have had brain mets and we all have had some form of radiation!

Good Luck -

Lisa

[Ricefam in reply to ThePurplePlace]

Curious, our stories are very similar. What is your treatment? Mine is Tarceva daily and Avastin infusion every 4 weeks.

[ThePurplePlace in reply to Ricefam]

Ricefam,

I do not have the EGFR mutation so Tarceva would not be suitable for me. -After I had the SRS for my Brain met - I started Chemo (Carbo and Pemetrexed), but then had progression, had Radiation (chest) and then went onto Immunotherapy (Opdivo). I'm currently stable and on a 3 month treatment break! Good Luck!

Lisa

[Denzie Moderator Volunteer]

Sorry that he had this development. I went back over some of your earlier entries and I wonder if this was the MRI that was supposed to determine whether he had PCI already or not. If he hasn't had it yet he will need it. Do ask about Namenda. The people I know who've used it had better outcomes as far as recovery time was concerned.

I took the liberty of researching clinical trials for stereotactic radiation on small cell brain mets and the only ones I can find are in China or Switzerland. Ditto for the hippocampus preserving whole brain radiation.

The chemo treatment your dad had did not cross the blood brain barrier. When he has finished his radiation your dad may want to consider a trial for maintenance therapies that do. I would be happy to help.

In the meantime, Lisa has given you some great info. She has non small cell so treatments a bit different but her experience makes her one if the best to learn about side effects and their management from.

[ThePurplePlace in reply to Denzie]

Thank you Denzie --- I am just now realizing now that this patient has SCLC (not NSCLC) like me, but I would assume that they would treat the Brain Met in the same way??

Mine was a one time treatment (SRS) and I had NO side effects. I was taking Dexamethasone (Steroid) at that time for the brain swelling and stayed on it for several months after, along with Keppra an anti seizure medication. Thankfully I never had an seizures - It was precautionary.

I did have to go in for few appts to have my "mask" created and the measurements done for the exact spot they wanted to radiate, but once that was completed the actual procedure was one-time about 40 minutes. Painless ! I am very claustrophobic, so I did take Ativan to deal with the mask and such, but it went well and the best part is that it worked perfectly with no issues and not short or long term side effects.

Lisa

[Lesleykay21 in reply to ThePurplePlace]

Thank you for replying Lisa. It sounds like you are doing well and handled the radiation well. This gives me hope. My dad seems to be doing really well- you would never be able to tell he was sick... which is why it's so hard to believe it's in his brain now. I hope the doctors know the correct radiation to give to him. ( I'm sure they do). I asked my dad if they mentioned what the radiation was called and he said that it didn't have a specific name, and that the doctor just said he could radiate on it. I'm hoping they will do what's most effective. I'm glad to know you're doing well. Thanks again for your reply.

-Lesley

[ThePurplePlace in reply to Lesleykay21]

Lesley -- Have him ask about the Radation, as they are more than one type, and it could be something totally different than what I had. They also do WBRT (Whole brain radiation therapy), as an example. And that would have different side effects and is sometimes given in more than one dose - it can be very specific for each patient and I would not want you to think that this is exactly what will be done for him. I had only one met and that's how it was treated for me. Gamma Knife is also another name for this type of radiation.

WIshing him the best.....

[RwHayes Community Superhero in reply to Lesleykay21]

Hi Lesley ,

Sorry for the not so good news, I'm sure it's something they can take care of sounds like. My thoughts and prayers are with him . I too will be facing this same thing soon so maybe it will work out for both of us.

Best wishes,

RW

[Lesleykay21 in reply to RwHayes]

Hoping all goes well with you too. Do you have small cell as well?

[RwHayes Community Superhero in reply to Lesleykay21]

Yes it's limited stage small cell, left upper lobe, Hillar mass

[Lesleykay21 in reply to RwHayes]

Cancer sucks!

[RwHayes Community Superhero in reply to Lesleykay21]

You can say that again.

[Jenniferroseolson in reply to ThePurplePlace]

My experience was very similar to yours, Lisa. My mets were not found, though, until they were too large for SRS. I had craniotomy to remove two. Then on a 6 month follow-up MRI, we found two more mets, this time very very small and treated by SRS with steroids. I will be closely followed with MRI every 3-4months.

SRS is an amazing technology, Lesley. The recovery truly is quite simple....I drove myself home from the actual radiation treatment and played volleyball the next evening. Having the mask made is the hardest part (harder than the claustrophobic feeling of wearing the mask for the actual radiation). There are a couple different "machines" that are used, so his doctor may refer to it based on which one your cancer center uses. Whole-brain radiation is a completely different procedure and process, so finding out which type is being recommended is the first step.

Best wishes.

Jennifer

[ThePurplePlace in reply to Jenniferroseolson]

Jennifer -- I was very lucky they found my one met at a stage where it could be treated with SRS. My Neuro MD felt that surgical removal might cause me long term issues, do to the depth and location of the met, making me even more thankful that SRS was an option. The hardest part was the "mask" fittings and just having to wear it and be still during the actual procedure. I am extremely claustrophobic, but they prescribed me Ativan and I managed it okay with that. I was VERY pleased when it was done! Like you, I did not have any side effects (other the general fatigue). I had MUCH worse fatigue when I had the "standard" radiation on my lung tumor, but that was just harder because it went on for days and I was taking myself to each appointment. For the SRS my husband had time off to take me and that was a huge help. It really is an amazing treatment and I'm so pleased it worked so well for me and you too!!

Lisa

[RwHayes Community Superhero in reply to Denzie]

What is the namenda for?

[Denzie Moderator Volunteer in reply to RwHayes]

It was developed for Alzheimer's patient to improve cognitive ability. Its now being used to improve cognition in WBR patients as well.

********************

From the WebMD website.

Memantine (Namenda) is used to treat moderate to severe confusion (dementia) related to Alzheimer's disease. It does not cure Alzheimer's disease, but it may improve memory, awareness, and the ability to perform daily functions.

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[Denzie Moderator Volunteer]

Lisa, the steroids and Keppra will still be the same. I am glad that you didn't experience the exhaustion. Still side effects are side effects and steroids can make a person uncomfortable for a few days.

[dreich58]

I was diagnosed December 2015 with stage 4 non-small cell lung cancer. The first oncologist said he wasn't going to do a brain MRI because I didn't have any neurological symptoms. I went to a lung cancer specialist and he said he was going to have one done because he wanted to know all he was dealing with. Good thing he did as I had two small mets in the occipital lobe. They did gamma knife radiation on the two lesions plus my back. The procedure took about 20 minutes on the brain and 20 - 30 minutes on my back. I've had two brain MRIs since then and there is no visible signs of the lesions now or any new lesions. They will continue doing brain MRIs every 5 - 6 months.

[Lesleykay21 in reply to dreich58]

Thank you for responding. I'm glad you are doing well since then. I think they are doing radiation on his whole brain. My dad said he has to go everyday for 2 Weeks. Hoping it is effective. Thank you for responding

[Laura4]

When I was diagnosed with stage 4 nsclc it had metastasized to my head but did breach the blood brain barrier. So I had radiation for two weeks. It was ok not too many side effects but my hair does not grow too well in that spot. It turned out fine for me. I hope this helps it will probably be the same for your dad.

[Lesleykay21 in reply to Laura4]

Thank you Laura. I'm glad to know this was something you were able to get through. We are hoping this helps my dad. Thank you again

[Laura4]

Yes I had a much larger lesion but it had not breeches the blood brain barrier. Been 18 months and no return. I just had a little trouble with hair growing more slowly in that spot. Everyday for three weeks. I hope this makes you feel alittle better 😊

[Lesleykay21 in reply to Laura4]

Thank you for responding Laura4. This gives me hope!!

[Ricefam]

I had three areas in my brain metastasized from my lung that were treated with stereotactic radiation and I am shy a month from being without evidence of disease two years. There are so many factors that I feel play into keeping the cancer at bay. They are: prayer, positive attitude, pretty good health to begin with, diet free of pesticides, hormones, gmo's and high carbs and high fructose syrups. Lots of good, chemical free water and organic green tea. Eat lots of antioxidants; berries, spinach, broccoli, Brussels sprouts, cauliflower, pecans, walnuts, etc. Anticancer a New Way of Life by Dr. Servan Schreiber with the yellow sticker is a great resource. Prayers coming your father's way. God bless.

[Jenniferroseolson]

One more note: chemotherapy for lung cancer typically (always) cannot penetrate the blood brain barrier, so the brain is not protected through chemo. If any stage IV metastatic patient is reading this thread, please make sure your oncologist is closely monitoring you for potential mets in the brain. I had two chemo cycles of debilitating headaches and vomiting as part of my side effects (not caused by the chemo agent), but because I was not vocal about them and didn't know that the brain is a common place for mets, I didn't mention the headaches immediately. Subsequently, my mets were not identified until they were larger than is recommended for radiation. Craniotomy recovery is NO Fun. Please be a strong advocate for yourself and share all symptoms and questions with your medical team.

Jennifer