Recurrences

Hello,

Yesterday I had my third MRI since beginning treatment for GBM back in April.  THe June MRI had some what I call "chatter", probably swelling in my brain; the docs weren't sure but did say there was no "recurrence".  The September MRI was even better; the MRI report said, to put it in docspeak, "There is no evidence of recurrent or residual neoplasm".

I'm not anticipating any bad news, but one never knows.  I've lived with this "Sword of Damocles" getting ready to fall on my head for nearly a year so I really don't think about it all that much.  I came off 400 mg Temodar November 9th, I've been recovering but it will take some time.  Mainly I get weak in the middle of the day, but not debilitated.  I haven't had skull-crushing headaches, my balance and coordination have been good, so (hopefully) I'll have good news next Thursday. 

I'll probably have MRIs the rest of my natural life, so I'm curious as to what signs I should be looking for regarding a possible recurrence.  There doesn't seem to be any rhyme or reason to them; one man I know had three brain surgeries in just over a year and some people have remained clear for years.  Just the luck of the draw.  Hope I get a good card, it would be nice to survive this thing.  Thanks!

My husband was clear for 2 years after diagnosis.  He started experiencing symptoms the same as when he was originally diagnosed.  He has started Avastin and has had 4 treatments. His first MRI is in 2 weeks since starting Avastin.  He was on Temodar the entire 2 years, stopped when the recurrence happened. Wish you the best.

Randy, Congratulations for doing so well. Hope you drew the long straw........My husband has had two recurrences. Both were picked up via MRI with no neurological symptoms. We feel very blessed to be 28 months out doing so well. Look forward to reading about many many clear MRI's for you! Pam

On Jan 06, 2013 3:06 AM Bulley1 wrote:

Randy, Congratulations for doing so well. Hope you drew the long straw........My husband has had two recurrences. Both were picked up via MRI with no neurological symptoms. We feel very blessed to be 28 months out doing so well. Look forward to reading about many many clear MRI's for you! Pam

Hi Bulley,

Can you clarify what you mean by "no neurological symptoms?"  Outside of still being somewhat weak from the Temodar (I was on 400 mg for three months, chemo for seven months total), I don't feel as if I'm doing too bad.  No nausea, double vision, vomiting, etc.  Just feel the need to sit down from time to time.  We were even able to go to Universal Studios in Hollywood, and if the weather holds we're going to the Aquarium in Long Beach next week.  Plus I've been mowing the lawn (our yards are not small), trimming back some shrubbery in the backyard, and tucking away heavy boxes in the garage rafters (just don't tell my doctor, he wouldn't like it), plus I took down our outside Christmas lights.  So I'd be very surprised if I have some sort of recurrence, but one never knows.  Wish me luck :)

Randy, Sorry I wasn't clear. Dan's recurrences showed up via MRI's. the regrowth was caught so early he had no noticeable symptoms. Was your MRI clear? I do wish you luck!!! Won't breathe a word about Christmas boxes in the rafters. I'm thrilled you have the strength and stamina to tackle that task. Blessings, Pam

I'm surprised you have only had three MRI's, my wife had them every other month over a 19 month span.  Currently she's going three months between scans.

Your scans will diminish in frequency the longer you survive without recurrence.  Because of the frequent scans post-surgery, most recurrences are found before symptoms show up.  However, your relatively good physical condition and mental status would indicate (unscientifically of course) to me that you are likely to have a good report.

 

On Jan 09, 2013 2:31 AM Bulley1 wrote:

Randy, Sorry I wasn't clear. Dan's recurrences showed up via MRI's. the regrowth was caught so early he had no noticeable symptoms. Was your MRI clear? I do wish you luck!!! Won't breathe a word about Christmas boxes in the rafters. I'm thrilled you have the strength and stamina to tackle that task. Blessings, Pam

LOL, thanks for not snitching me out, I'm certain he wouldn't like me movimg heavy stuff (or mowing the lawns, which are not small, or taking down the outside Christmas lights, which involved more ladder work -- I went up and down like a monkey, which I resemble anyway, tail and all -- also trimmed some shrubbery in the backyard, dragged two large barrels of firewood across the back lawn, around the pool, and placed onto the covered patio (to keep it out of the rain), dragged a large water cooler onto the same patio, shampooed the neighbor's Rottweiler, juggled some bags of cement, and crushed some car bodies at the local wrecking yard.  He definitely wouldn't like hearing about any of that :)

I won't know until sometime Thursday how my MRI went.  I'm seeing six doctors at four different places, two of the docs are directly involved in my cancer treatment.  The last MRI was late September, they saw me in mid October and scheduled me for another appointment in early February; I'm seeing another doctor at another hospital and he's calling the shots on when I can return to work, he said one more good MRI and he'd OK it.  For what it's worth, if I have a recurrence I'm not going to worry about it, and I certainly won't be afraid of it.  Frankly, after what's happened in the last 11 months there isn't a whole lot left to be afraid of.  Upon hearing I had a brain tumor my first thought was "thank good ness this didn't happen to my wife or children".  And then I thought, "Oh, shit!"

On Jan 09, 2013 2:52 AM jon4156 wrote:

I'm surprised you have only had three MRI's, my wife had them every other month over a 19 month span.  Currently she's going three months between scans.

Your scans will diminish in frequency the longer you survive without recurrence.  Because of the frequent scans post-surgery, most recurrences are found before symptoms show up.  However, your relatively good physical condition and mental status would indicate (unscientifically of course) to me that you are likely to have a good report.

 

Hi Jon,

I've had a total of six --the first discovered the tumor, aka the little bastard, the second confirmed that they debulked most of it, though it left behind tendrils reaching into my brain, the third was taken before I began treatment in April, the fourth was in late June (showed what was probably brain swelling from the radiation, but no evidence of recurrence), the fifth was late September, and th sixth was last Friday.  I wanted to have another MRI in December, but the docs said I didn't need one until January at the earliest, unless something happened (so far I seem to be firing on all thrusters).  The October MRI had at least four pairs of eyes on it--the radiologist at Loma Linda, the docs at RCRMC, and the doc at Loma Linda hospital, and they all agreed that there was no evidence of recurrence, or residual neoplasm.  I had a relative (someone who means well, but is only perhaps at best 1/100th as informed as she wants everyone to think she is, which to me can be irresponsible depending on who she's trying to snow -- I usually just blow her off), ask me, rather, DEMAND of me why I wasn't getting regular MRIs.  I patiently explained to her that I was undergoing proton treatment, which she already knew, and every day before being treated my skull was being X-rayed.  The techs didn't discuss the results with me, but I've had two clean MRIs and you can't argue with those.  Here's hoping third time's the charm . . . and hopefully not "three on a match".

Hi Randy.....Seriously?   You've done all that?   Umm....would you consider coming to Minnesota and helping out at our house???   J/K.   Amazing.   I agree....I think all is going to be good on your MRI.   Good Luck.   I will be checking on Friday for confirmation of your good MRI

On Jan 09, 2013 6:21 PM tromda wrote:

Hi Randy.....Seriously?   You've done all that?   Umm....would you consider coming to Minnesota and helping out at our house???   J/K.   Amazing.   I agree....I think all is going to be good on your MRI.   Good Luck.   I will be checking on Friday for confirmation of your good MRI

Thanks, I hope I'll have good news.