gn-21, A new stage - looks like brain mets. Damn! - 1260619

gn21
Posts:144

Well, after nearly 5 years it feels like I am on a slippery slope!

Latest brain scan shows 2 probable mets. MRI scheduled in 5 days, with watchful waiting or SRBT as possible options. Have been reading up (of course) on everything. SBRT doesn't look like much fun, and survival rates as a Stage 4 with brain mets looks pretty dismal.

All input very welcome. Not feeling so tough today!

Gail

Forums
Full Archive

Reply # - November 20, 2013, 09:30 PM

Dr West
Posts: 4735

I'm sorry to hear that. Just as a tiny point, SBRT is for body lesions/lung lesions, and in the brain it's called stereotactic radiosurgery (SRS), gamma knife, or cyber knife.

Of course it's fair to say any treatment for brain metastases is no fun, but SRS is not that dreadful either -- one day of treatment that is typically very successul. Is there something about it that is particularly worrisome to you? Most people have no side effects and no issues at all with it.

-Dr. West

Reply # - November 21, 2013, 03:04 AM

gn21
Posts: 144

Dr West
Thanks for clarification,, it is appreciated.

What do I fear? Loss of brain function, seizures and fits, the beginning of the end......

Apologies - the news is very new. I know so many there have been through so much more, but this feels like a watershed moment to me.

But I know tomorrow will be better.

Gail

Reply # - November 21, 2013, 08:05 AM

sherrys
Posts: 212

Gail, I'm sorry to hear your news. I wanted to tell you that I was stage I, then 3 years after having clear scans, I had a brain met that was the size of a golf ball. It was surgically resected, followed by cyberknife. I am now 16 months past that point with no recurrence as of yet.

The cyberknife was relatively easy. Nothing hurt. The mask was not nearly as bad as I had anticipated and I am very claustrophobic. I had some swelling and some dizziness in the beginning, but some of that was also related to the surgery. I did have bald spots where the radiation entered my head, and I did subsequently have most of my hair thin so much that I was almost bald. HOWEVER, I did have brain surgery, followed by 2 infections that had to be surgically cleaned, and my father was living with me and was in the final days of his life. Looking back, the drs. feel that the hair loss was more related to stress and anesthesia than anything else. I have no loss of brain function, no problems with speech or gait, no seizures or fits, etc. I also was very fearful that it was the beginning of the end, but I am here writing this to you.

Good luck and please keep us updated!

Reply # - November 21, 2013, 08:49 AM

gn21
Posts: 144

Thanks for your story Sherry. Very comforting.

Initial panic is over. Trying to get back to living with fear, not living in fear!

But it is 3.48am here in Australia and I'm awake!

One day at a time......

Gail

Reply # - November 21, 2013, 09:01 PM

Dr West
Posts: 4735

I certainly didn't mean to minimize your concern, but rather to reassure you that SRS is very well tolerated and typically very effective, especially for just one or a few brain lesions. I hope you sleep better soon.

-Dr. West

Reply # - November 22, 2013, 07:08 PM

laya d.
Posts: 714

HI Gail::

I can tell you that my Mom had very little to no side-effects from the gamma knife to her brain mets (they all were in the few millimeter range, but she also had gamma knife after brain surgery to the surgical bed - - about 3 cm's worth). No extra fatigue, no pain, nothing really. Plus, the steroids they had her on for a few days gave her energy and increased her appetite. So she liked that part of it. . .

Anyway, I'm so very sorry you are going through this. You are a truly amazing person...and I'm keeping you very close!!!

xoxo,
Laya

Reply # - November 22, 2013, 08:21 PM

luke
Posts: 101

Hi Gail

I, too, want to share with you my experience with brain mets. My dad's disease was first diagnosed from his single (fairly large, 4 by 4 cm) brain met. He underwent WBRT (with an increased dose to the single met - not sure how they do this - sounds like a gamma knife within a WBRT?).

This was Aug 2011, more than 2 years ago. He's been NED in his brain since his WBRT.

There were side effects from the WBRT no doubt: fatigue, hair loss. But they resolved with time.

I hope you can find encouragement from my and the other Gracers' feedback and experiences.

Luke

Reply # - November 23, 2013, 01:44 AM

Jazz
Posts: 279

Oh Gail,
I understand why this is a watershed moment for you. The prospect of brain mets, no matter how small or few is scary. Fortunately they were caught while few and small, and are easily treatable. I say blast the bloody things and continue thrilling us with your adventures.

I hope you are otherwise well and have good things planned for the holidays and summer. Please keep us posted and as always, fingers and toes crossed for you!

Best,
Jazz (awake at 1:42am)

Reply # - November 23, 2013, 05:42 AM

carrigallen
Posts: 194

Sorry for this news, would encourage you to stay positive. SRS can often achieve good local control for up to 1-3 small brain mets. Another option to consider is surgery followed by SRS, especially if the lesion is close to the edge of the brain. The advantage here is that you also get a tissue diagnosis. There is actually fairly fast recovery after a limited craniotomy. A high-quality MRI with gadolinium is essential for defining the extent and number of lesions. Very rarely, multiple sclerosis in young women can mimic brain mets, so having the study reviewed by a specialist can be helpful. Hope this helps.

Reply # - November 23, 2013, 05:57 PM

pepperhead
Posts: 11

Gail,
My wife just went through SRS about 2 weeks ago for a 9x11mm (originally 5x5mm) lesion on the left temporal lobe that the WBRT didn't get in June. The worst part for her was being in the machine for over an hour. Normally a 40 minute treatment process once they start, but apparently the computer picked up dust on the mirrors or something and they had to clean them and resume. She wasn't real keen on wearing the mask, and using the bite piece but the Doc prescribed her anxiety meds which took the edge off and she handled it like a champ. No hair loss or other issues to speak of. Only bummer was she had no increase in appetite or energy level from the 10 day course of steroids after the treatment I had hoped for.
Hope this eases your mind a little more.

Reply # - November 27, 2013, 09:41 PM

gn21
Posts: 144

No good news to report unfortunately. MRI showed 7 x 3-5mm mets. Damn, damn, and double damn!

Next MRI in 6 weeks then decision as to whether to do whole brain radiation. This does not appeal,to me at all, but seems options are limited.

In the meantime, I am legally unable to drive. This is a considerable problem. I live in the middle of 60 acres, 14 kilometers from the nearest town and 130 kilometers from the hospital where I am treated.

So, today is my pity party. Tomorrow will be time to pull myself together again.

Gail

Reply # - November 28, 2013, 12:25 PM

Dr West
Posts: 4735

Gail,

I'm truly sorry to hear of those new brain lesions. I understand that you're quite wary about WBR, but it has the promise of likely being very effective and the right treatment if several new lesions are appearing over time.

Good luck. Thinking of you.

-Dr. West

Reply # - January 16, 2014, 01:29 AM

gn21
Posts: 144

And the latest is......

Last week MRI showed 14 mets - I'm advised that the others would have been there at the last MRI but not visible. Previous visible mets have grown slightly. And lung tumour is 'consolidating'.

So WBR commences in about 10 days. Two lots of 5 days.

And after that, off the alimta and back on to tarceva in anticipation of the Clovis trial of CO 1686. And somewhere in there, a new biopsy re T790.

But I have a festival to go to pre radiation, and a 5 day holiday at a famous beach resort, Byron Bay, post radiation.

It is what it is.....

Gail

Reply # - January 16, 2014, 04:32 PM

Dr West
Posts: 4735

Gail,

I'm sorry about that development but do think that WBR makes good sense. I'll just mention that the risk of adverse effects is higher with shorter courses like 1 or even 2 weeks (5 or 10 "fractions", or individual treatments) of radiation. In the US, it is more common to favor 3 or 4 weeks of treatment with WBR (which doesn't increase the total dose of treatment, just lowers the dose per treatment) to maximize safety. I don't know if there is any flexibility in this regard, but I and most of the radiation oncologists I know would prefer to have WBR delivered over 3 or 4 weeks if it were a member of our own family.

I'm getting more and more information about CO-1686, which is very impressive for patients with acquired resistance to an EGFR TKI after a very good prior response. I'll probably write a post about it very soon.

-Dr. West

Reply # - January 16, 2014, 06:15 PM

pepperhead
Posts: 11

I love your attitude Gail. I especially like the "It is what it is". My wife hated that phrase but it was the only thing I could come up with to deal with a situation we had little control over. She had 14 days of WBR for her mets. It was a lot of work getting to the appointments each day but between the Dilantin and WBR it beat the hell out of having seizures. The worst part for her, as I suspect for all women was losing her hair about 3 weeks after the last treatment. After relentless pestering she relented and let me shave her head. Bald is beautiful. She wasn't into the wig thing but managed to acquire quite the assortment of hats. And think of all the money you'll save on the hair salon and shampoo :wink: She did experience some fatigue but had some other health issues that probably compounded it some. You appear to be pretty active so you may experience a reduced level of fatigue. Keep on truckin!

Oscar

Reply # - January 25, 2014, 04:07 PM

double trouble
Posts: 573

Gail, I completely missed all of this going on since I was in hospital. Otherwise I would have responded much sooner . You know you are one of my absolute heroes, and my heart aches at not necessarily the new developments, but at what it has done to your spirit. I have had those moments, and if I have judged you correctly, you will rebound and face your new challenges head on. Know that I "shake my fists at the universe" over this, and I hope that you are "holding your nerve."

Much Love,
Debra

Reply # - February 13, 2014, 02:26 AM

gn21
Posts: 144

Just an update.

Finished 10 days of WBR nearly a week ago. No real side effects, although hair is falling out, as expected.

The day after I finished WBR I flew to Byron Bay for 5 days of food, wine, friends and water. Started back on tarceva that same day, with either of two aims. 1) that it will kick in again, or 2) that it's a step on the way for qualifying for CO 1686 trial, and another one that may also be an option.

Overall feeling pretty good.

Just one question - what is a realistic expectation of the WBR, given I had 14+ mets?

Gail

Reply # - February 13, 2014, 03:56 AM

commodore64
Posts: 37

WBRT worked really well for my mom. It took care of all the lesions on the surface of her brain (12+) and elsewhere, except the one on the pons, which we were then able to zap with gamma knife, since all the other lesions were gone/inactive/scar tissue.

Biggest side effect was extreme fatigue, so keep hydrated and if you are tired, feel free to rest!

Reply # - February 13, 2014, 04:07 AM

njliu
Posts: 142

Hi Gail, glad to hear from you, and glad that you seem to weather WBR well. My wife similarly went through 10 sessions of WBR 13 months ago for 4+ brain mets and also resumed TKI Inhibitor literally the moment she completed the last radiation. She experienced increasing fatigue for months before she recovered. Her last MRI a month ago shows NED in the brain. As often said: Responder responds. You have proven to be a great responder. Good Luck.

Reply # - February 13, 2014, 05:34 AM

JimC
Posts: 2753

Hi Gail,

Glad that you've finished WBR without many side effects. I always enjoy hearing how you immediately move on, enjoying life to the fullest.

In addition to the helpful responses you've already received, radiation oncologist Dr. Loiselle has stated:

"In general, whole brain irradiation is safe and effective in suppressing known brain metastases as well as subclinical (no symptoms) and subradiographic (not visible on scans) disease." - http://cancergrace.org/radiation/2011/06/10/brain-mets-cases/

JimC
Forum moderator

Reply # - February 13, 2014, 09:44 PM

Dr West
Posts: 4735

Gail,

I'm glad you're doing so well. To address your question, it's really not the number of metastases, except that WBR makes much more sense than stereotactic radiosurgery once you get above a handful of lesions. But it's likely to be quite successful whether it's 6 or 16 or "innumerable", which is sometimes the way the number is characterized on brain MRI reports.

Please keep us posted on your travels and your clinical paths. In both ways, you are among the most extensive travelers we know, and it's inspirational.

-Dr. West

Reply # - March 27, 2014, 08:41 AM

gn21
Posts: 144

Hi all

Just received my post WBR/restarting in tarceva scan results.

Brain scan not bad, with only one met being visible, but acknowledging shortcomings of CT for brain.

Main lung tumour almost double in size, in anout 8 weeks. The good part of that is that the growth has filled in the air bubble that previously surrounded tumour, making me easier to biopsy in preparation for the Clovis CO1686 trial. Decision of how and when they will biopsy next week.

Plus suspicious spot on liver, which onc didn't mention, so will have to ask him next week when I see him.

But I am allowed to drive again!

Took 3 x 5 day holidays between WBR and now, but can't plan the next one until we have sorted trial out.

Gail

Reply # - March 27, 2014, 10:15 AM

catdander
Posts:

I picture you on the back of a scooter touring Rome aka Roman Holiday when I read 3 x 5 day holidays.
Keep up the good work of my dreamy vision of you...or send pics...
Hope the work moving into the trial moves along quickly.

Cheers 8-)
Janine

Reply # - March 31, 2014, 12:10 PM

double trouble
Posts: 573

Gail, so happy to hear you are full of optimism. I was reading back a bit where you said something about others going through much more. I know that feeling, but I have to say that each and every one of us goes to Hell and back with this disease, some of us over and over again. No one persons plight is more or less frightening, or devastating. And what I have seen is that as bad as cancer is, it somehow brings out the very best in us. It teaches us how to truly live, and how to treat others, and how to admit we need help and to accept that help understanding that those giving it are enriched by the giving. So I see it as a blessing. And I no longer pay any attention to guesses on prognosis, nor do I ask. It no longer matters.

In the hospital, I remember going downhill very quickly. I don't know if they actually called a code, but I think they did, as the room filled with people and equipment at once. I was asked if I really did not want to be intubated, and I said no. I knew the end was imminent. And the most amazing thing happened. I was not afraid. I just closed my eyes feeling complete peace.

I don't know exactly what happened after that, except that I woke up with a c-pap mask on, and couldn't yank it off fast enough. Since then I've tried to figure out why I'm still here, and I think I may have figured it out. I'm here to drink up the absolute joy I feel. Every time I wake up, every time see my Granddaughter, and so much more. I think I must have done something right somewhere, and I am living with the reward. I think maybe I have found the joy you seem to have been living in for as long as I've known you.

You are a hero to me. I knew you would rebound, and you continue to show us how to "live with fear, not in fear." Much love to you, and good luck with Clovis or whatever you decide to do next.

Debra

Reply # - April 2, 2014, 07:25 PM

gn21
Posts: 144

Thanks for all your responses, and lovely to hear from you Debra.

Needle aspiration biopsy scheduled for next Tuesday. Clovis consent form signed. Now let's hope it's T790!

Am also free over Easter to go camping at our National Folk festival in Canberra for 5 days. Excellent!

Gail

Reply # - April 2, 2014, 10:19 PM

borntosurvive
Posts: 52

Glad to hear you kicking your heels up in the face of fear. I have the feeling the cancer is more scared of you than visa versa. You are quite the fighter.

I'm currently in Royal North Shore Hospital for 8 days now with a punctured lung (now on the mend) and facing some other complications. It's been a real horrible experience since getting to emergency too. I don't seem to get a break to fight this with positive energy. Seems it's one thing after another. I might go home tomorrow or Monday. But tonight belongs to the pizza my DH is bringing me!

Lots of love. Enjoy that festival girl!

Nancy

Reply # - April 27, 2014, 10:37 PM

gn21
Posts: 144

Thank you all for your thoughts. Very timely as I heard today that I have tested positive for T790 and therefore expect to start the trial within a week.

This will be my third clinical trial and I am grateful to each one - it's now over 5 years since diagnosis, I mostly have a reasonable quality of life, and I have more time for planning holidays. This time I think a cruise round the South Pacific would be in order.

Gail

Reply # - May 6, 2014, 03:09 AM

gn21
Posts: 144

Thanks for the good wishes.

Cleared all the hurdles for Clovis CO 1868 trial and started in Monday.

Lots of blood drawn, 2 x 3 ECGs, lessons in glucose monitoring, obs and physical, and 6 tablets twice a day. Plus some magnesium and potassium to keep me going. And of course clexane twice a day.

Very happy to be part of the trial. Looking forward to recovering from the tarceva side effects, and moving on to some new, and hopefully tolerable, ones.

First scan mid June. I'll keep you posted. Up to 5 years and 3 months!

Gail

Reply # - May 6, 2014, 12:30 PM

catdander
Posts:

Oh Gail it's so good to hear your shining voice...OK, I can visualize what that statement means but it's difficult to explain a cyber relationship. : ) I'm proud of you for moving through this disease or at least this website with so much life. You're an inspiration!
I hope you recover quickly from the tarceva junk effects and not notice anything new...or at least it will be manageable.
Are you in the escalation/phase 1 or the eval/phase 2?
I'm sure there are many looking to see how you fare and we all want you to do very well.

I found this to be the only study clinicaltrials.org has on clovis for nsclc in Australia. Did you mean CO-1686? (just for other readers. I couldn't care less about the switch otherwise ;) ) Study to Evaluate Safety, Pharmacokinetics, and Efficacy of CO-1686 in Previously Treated Mutant Epidermal Growth Factor Receptor (EGFR) in Non-Small Cell Lung Cancer (NSCLC) Patients http://clinicaltrials.gov/ct2/show/NCT01526928?term=clovis&cond=nsclc&c…

Good luck
gOOd Luck
good LUCK
and swim on!
Janine

Previous PostNext Post