Stage 4 lung cancer with brain mets and radiation questions

[cammfam4]

Starting radiation on Monday and in a study to avoid the hippocampus area for short term memory. My concern is that even though no cancer is show in that region now that there may be microscopic legions already there and by avoiding this area may indeed hurt me in the future. Trying to figure out if I should stay in the study. Currently I have no symptoms and jus started Tarceva for the EGFR mutation. Anyone out there who has ben through this? Please respond if so. Thank you,

[joanfong]

I had whole brain radiation because 13 small tumors were found. The radiation itself wasn't bad. However 2 weeks after, my appetite disappeared and I lost 30 pounds and my hair. I needed to lose that weight anyway, so I wasn't too alarmed. There are some stylish wigs and hats from the American Cancer Society that protected my head during the summer. I took memantine for 6 months to help maintain brain memory. It's a common drug used for Alzheimer's patients. I had Tarceva initially for 7 months (before progression) as I have the EGFR exon 19 mutation.

Get a second opinion. Even if you have to pay, it will be worth it.

Best to you,

-Joan

[cammfam4 in reply to joanfong]

Thank you for your reply. I too will be on memantine and am currently just started on Tarceva for the mutation. How long have you been diagnosed?

[Denzie Moderator Volunteer]

After radiation is finished you will be followed very close with regular MRIs. Theoretically, they can then follow those with Gammaknife radiation on any spots that come up. I say theoretically because I have no personal experience with this just years of following the research against the day I need WBR.

[Jenniferroseolson in reply to Denzie]

I have had SRS radiation on a small brain met just as Denzie described. After craniotomy to remove 2 larger lesions in may, close monitoring with MRI found a new tiny lesion 4 months later that was successfully treated with srs. MRI (every few months ) should mean any new growth is found early and can be dealt with at that time. Best wishes for great success.

[GailO in reply to Denzie]

I have a stage 4 friend who had gamma knife at Mayo and it was a great success.

[cammfam4 in reply to Denzie]

Thank you!

[GailO]

I haven't been through brain radiation, but my message to you would be to breathe and understand that we all have some cancer cells that go undetected, and our beautiful bodies find a way to deal with them.

I don't even know if the chemo you're on now will penetrate the blood/brain barrier.

I love a meditation CD for Cancer Patients by Belleruth Naparstek. There is evidence to support meditation.

[cammfam4 in reply to GailO]

Thank you I will look for the CD.

[Denzie Moderator Volunteer]

A question that is bound to come up as you research is "Can I have WBR and Gammaknife?" The answer is yes.

Another is "How many can they treat with GK ?". I follow a woman on another site who has had 66. Hopefully you won't require that many just know that it is possible.

The hippocampus preserving radiation that you are having is still pretty new and innovative (IMHO).

[cammfam4 in reply to Denzie]

Yes, that is what Im afraid of that it will miss something because it is new but most say its worth the risk. I hope so. Thank you!

[ThePurplePlace]

I had SRS for a single brain met, back in May 2015 (I'm Stage IV NSCLC - diagnosed 3/27/15). It worked perfectly for me with no side effects and no issues. In my cause, this was a one-time high dose treatment, specifically targeted to the exact area where the met was in my brain. It's now been 18 months since I had it done, and there has been no recurrence of that met or anything else in my Brain! YAY!

I'm still in treatment for my Lung Tumor currently with Opdivo, and I do have rountine Brain MRI's and CT Scans.

Good Luck

Lisa

[Lesleykay21]

Hi Camfamm4,

What type of cancer do you have?

[cammfam4 in reply to Lesleykay21]

Stage 4 lung with mets to brain and adrenals on Tarceva currently and finished WBR two weeks ago.

[Bmcarter in reply to cammfam4]

cammfam4 - I see that this post was three months ago. If you're still following this site, would you be willing to update your status in terms of the WBR? Side effects you experienced or are still experiencing? Any results from the hippocampus trial? We have read about these trials and were wondering if we should consider them for our dad. My dad will start WBRT next week and he is really concerned with the potential cognitive outcome long-term.

[cammfam4 in reply to Bmcarter]

HI there, So far I have had no issues with memory from the WBR, my side effects were mostly no taste buds, fatigue and hair loss, my first MRI since the treatment was in December and it showed reduction of mets and scales of lingering mets. I have a new MRI on Monday so hopefully that will have good news as well. The only reason I did the hippocampus sparing was because they said I had no mets in that area, if that is the case with your dad than its worth a shot. The only side effects left are the hair loss but it took a good 2 months to get the taste buds back.

Good luck to your Dad and your family.

[Denzie Moderator Volunteer in reply to cammfam4]

Was so happy to read your post. I look forward to reading an update post MRI.