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:( METS to Brain

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

My wife had a bad headache the other day. T be cautious we did an MRI.... about 10 weeks since her last. Last one was clear. This showed seven small spots. Onc does not think the mets caused the headaches, rather, it was a side effect of her current chemo meds.... just "lucky" we found it as a result of chemo.

Am trying to tell my wife that although this is a set-back, the battle is not over. Too many of you have success stories of sorts of brain mets and a good amount of time afterward. She continues to be otherwise in great shape. We walked 3.5 miles tonight at a brisk pace as a warm-up for a 16 mile walk this weekend.

She wants to keep fighting... her fear is that she gets to a point where our kids and me suffer watching her. I told her that if/when she decides that she is done fighting, she make that choice for HER wellbeing. THat she quit when it is HER suffering that is too much. Until then, the kids and I are responisble for our own suffering.

I thought my mom (who died last year of breast cancer mets) was the strongest woman I knew. That was true, but man my wife is somthing else. She is ADAMANT that she will do this walking marathon in September. Meanwhile, she works, spends time with the four kids, and makes me feel like the most supportive husband ever.

We have two oncs at different institutions that we see... we have fouind it very beneficial. We get both opinions of treatment and second it with the other making adjustments as needed.

Tomorrow we see onco number one to answer questions and come up with a plan......

will keep you all posted.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

After we get our info.... I'd like some more info from others in simlar situations. Deb.. you especially come to mind. You have been down this road twice, and for an extended period of time. That gives me real hope!

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I'll help in any way I possibly can!

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

and since the first time since my wifes diagnosis, I am real scared. REAL scared. Not just about losing her, but about not being the best support I can be... then being the best father I can be to our four children.... There are days when this seems like her and I are very cavalier about the whole thing... like we are still invincible teenagers, then other times I think I am at my breaking point. Most all of you have been (or will be) there.

I spoke of you in particular tonight during our walk.... it comofrted my wife to know of others with such longevity, strength and quick wittedness.... so you have already helped! Thank you. :)

grannylove
Posts: 183
Joined: Apr 2011

so sorry to hear that you and your wife are again having to face another battle with this dreaded disease. Please know that there are positive thoughts and prayers for both of you. Sounds like you and your wife make a good team and will kick cancer butt once again. Keep up the strong attitude. We are here for you both. God bless
Cheryl

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

We are definitely fortunate to have the facilities we go to here. We went in this am to see the onco. They spoke and said that the spots were so small that we could probably go several months without any treatment so that she could finish this round of chemo. At the same time treating know would prevent us from having to stop mid treatment if things got worse.

We decided to do the radiation now. THey really bent over backward to get things moving. We were supposed to see the radiologist next week. But he squeezed us in between some other patients and explained everything. They got my wifes mask made and did the simulation, so she starts tommorrow. Fifteen days with the last day early in the morning before we take our kids on a weeklong rv trip to Mount Rushmore.

When we get back, we need to start our third line. The two most viable options are erlotinib with an experimental drug, or Pemetrexed. The onco is preferential to Pemetrexed however we can only participate in the erlotinib arq197 study now. But since she tested negative for EFGR, we are not sure we want to spend the time on erlotinib.

We also found out that they have had two people test negative for the eml4 alk mutation (for Crizotinib) at thePfizer lab, only to then test positive at an outside facility. So we are also going to do another biopsy to get some more material for testing.

All in all, the doctor was a lot more positive than we expected... especially when my wife reminded her that we will be walking 16 miles on Saturday in preparation for her walking marathon. So my mind is in a much better place than it was last night.

:)

sleepless in jersey
Posts: 185
Joined: Feb 2011

I cant believe she could get out there and do that walk WOW good for her!!!

She is a fighter! As I tell my Mom we are going to run into some hiccups along the way and we will deal with them as we are delt them.

I didn't know about the alk test sounds being a false-poistive that, that could happen. Am I understanding that right? Mom tested neg. and her Onc stated she would not be a good canidate for trial drugs...

Mom has brain mets, I dont know if this is of any help, I hope so, she had WBR for 10 days and was just really tired towards the last couple of days followed by carboplatin/alimta (which the generic name I believe is pemetrexed) her scans went great! Brain MRI clear :)

Continue to stay positive and Good Luck on the marathon!!!

ViewSonic
Posts: 17
Joined: Nov 2010

Naypaul,

Did your wife decide to go through with Whole Brain Radiation (WBR) or GammaKnife/CyberKnife? My wife (30 yo) has been thru a round of WBR and a session of GammaKnife. The WBR was in early January of this year to clear multiple spots (10+), and the GammaKnife was in late April to zap another (10+ spots). It seems the type of cancer my wife has is very agressive and is targeting her brain a lot. I hope she doesn't develop anymore because additional rounds of radiation will be harmful to her overall health. As a result of all the radiation, my wife is a changed person; her thought process has rather slowed down. She has short term memory loss, and forgets things daily. Her her reaction time is slow as well. Its rather depressing to see my wife not be herself anymore. However, despite everything she's been thru, she's still keeping the good fight. And after months of trying to get into the Crizotinib trial, she was finally accepted and has been on it for the past 3 weeks now. All the pain she's experienced before taking the pills has disipated, and she is no longer wheel-chair bound but is actively moving around. I am glad Crizotinib is working for her, however am quite sadden at what the brain radiation has done to her overall.

I hope your wife tests positive for the ALK gene, and can get enroll into Crizotinb trial. It has done wonders for my wife.

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

I had WBR as well as two separate brain-tumor surgeries - I'm 55. At 30, your wife has an excellent chance of recovering full mental abilities. I have short-term memory loss as well, but things come back, they just take a little longer than they used to. With my last surgery I lost my ability to type, of all things, but it IS coming back, slowly. I remember things longer than I did a year ago and don't have to write everything down the way I used to. Tell your wife - there IS a light at the end of the tunnel :)

PS - congratulations on the Crizotinib, sounds like it's working!

sleepless in jersey
Posts: 185
Joined: Feb 2011

So its the WBR that is effecting Mom the same way you have explained your wife? I missed the Doctors call late yesterday re: Mom has a delayed response in almost everything that she does in the past 3 weeks and had WBR in Feb.2011 examples a question on the phone takes her sometimes several seconds, at the store yest. and for her to get her money out of her wallet was sevral seconds as well just looking at it etc...I also dont know if her hearing has been effected from the chemo, but we have to repeat the question a couple of times to her?

Im so happy for your wife to be able to get in on the trial (crizotnib) and has seen such results!
Lots of continued progress your way...

stayingcalm's picture
stayingcalm
Posts: 656
Joined: Feb 2007

"Delayed response" is just about how I would characterize it, and the timing is right for the WBR to be responsible for it. My hearing was also damaged, whether from Cisplatin early in treatment or from the WBR, it's hard to say. Take it easy with your mom, repeat often, and try not to get mad if she forgets things - it's scary being on the other end of this, everything is so much more difficult to do! Much luck to you.
And, as I said to ViewSonic, there IS light at the end of the tunnel, I feel like the fog is thinning more every day :)

stayingcalm

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

She went with whole brain as there are six spots. They were VERY small. The onc could only find 4, the radiologist said they are the size of a head of pin and smaller.

None the less, we opted to treat now as we were not on any other systemic therapy. She will duo GammaKnife in the future if/when needed.

I would expect her thought process to slow down. She's been a little foggy with this chemo, so this will only add to it.

One day at a time.

Am so glad to hear your wife is responding to crizotinib. I love hearing good news!

kozina1946's picture
kozina1946
Posts: 6
Joined: Jan 2011

You go girl...walk that walk!!!!

ann m
Posts: 30
Joined: Jul 2011

What great fighters and inspiration you are to all us!
I love reading the successfull treatments and new ones that are working. Your walks are the part of the crusade! I use to walk when this all started with me until pain started in one leg and an mri showed a muscle tear with hematoma. They never did the pet scan down the whole leg (I will ask for this the next one) and I still think that something else is going on there. The pain is different and better than it was so I should start the walks again and see what happens. Doesn't it feel great to get that blood flowing thru the body? I love it.

Where do you live that you mentioned the great facalities?

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

We live in Omaha. I know there are good/great facilities other places. But I also know some areas are lacking.

I hope you can start walking or doing other exercises. It does feel good to do what we can. We just got home from a 10.5 mile walk. We cut it a little short as we were missing our kiddos.

We walk a 4, 3 and 5 mile walk on tues, wed and Thursdays. This Saturday will be our longest walk yet... 20 miles! This will test me. My wife is concerned as she will have had 12 days of radiation by then. It is causing her some fatigue and loss of appetite. So wish us luck!

Hope4Marge's picture
Hope4Marge
Posts: 74
Joined: Jul 2011

Your wife is amazing and I admire you and your family's strength and support. Thank you for sharing your story.

NayPaul's picture
NayPaul
Posts: 231
Joined: Oct 2010

Thanks.... my wife is amazing. But somedays I don't feel very strong. Last week she told me that she is not scared... that she will only be scared if I lose faith in her. She feels that as long as I say there is more that can be done, then we have time... while I appreciate her faith in me, it is a difficult place to be. I always have faith in her, but this is not being done by her, it is being done to her. I want to be strong supportive... but some days with raising kids, a job that requires that I be able to eork every day and nights... gets overwhelming. I feel like I am doing everything halfass because I don't have the time/enegrydesire to do it right.

I don't know how she does it. Its emotionally difficult on me, and im not the one going through it, and being subjected to cancer and its treatments which cause so many physical side effects that I would think would make it incredibly more diffficult to stay positive.

But most days are very good, like we still are invincable. Next week we go on a family vacation... hopefullyit will be a "cancer break" of sorts. No docors, no radiation, or blood draws, mris, cats, pets, no well meaning friends asking the wrong questions, or the right questions at the wrong time,... just try for some normalcy. The only nonnormalcy will be me contemplating how many more family vacations we will get.

Sorry... for beging so negatvive tonight just needed to exhale for a moment. Tomorrow will be all normal again.

grannylove
Posts: 183
Joined: Apr 2011

NayPaul, You are definitely normal! And yes, your wife is an amazing woman. It seems you draw strength from each other. You sound very excited to be going on a family vacation and I hope you all have a great time. We all need a week or so sometimes to escape from cancer. It renews our spirits and strengthens our souls. Have a safe trip and many enjoyable memories. God bless Cheryl

catcon49's picture
catcon49
Posts: 388
Joined: Aug 2008

Hope everything turns out great for you and your wife.

phoobear
Posts: 39
Joined: Apr 2011

hi i went through the same memory loss, and it is quite disturbing, but the good thing is it is slowly but surely getting better. hang in there it will get better. love and prayers too us all.

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