CSN Login
Members Online: 12

Waiting and Seeing

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

Well, it seems my lung scan was good, no change in the nodule. The bad news is all in my head, literally - there's a new tumor growing where the old one was. Once again, a targeted drug has failed to protect my brain >:-( (that's an angry face, in case you couldn't tell)
Since my brain has had all the radiation it can take, CyberKnife, Gamma Knife, Stereotactic radiosurgery are all out - seems like my only option is surgical removal, again (rolling eyes). It may have gone well the first time; twice is asking a lot from my lucky stars!
I haven't really sat down and talked to my doctor yet, he's waiting on a call from a neurosurgeon. Possibly I CAN have the really focused radiation, I just remember someone telling me I've had my limit.
Ah, wait and see, wait and see...see what happens when you wait? ;-)
This also brings home the pointlessness of the WBR I had and the fallout from it that will be with me forever...

This isn't very positive is it? Well the reality is that I'm not horribly worried, I think my doc may have a thing or two up his sleeve. I hope!

lekkerone
Posts: 199
Joined: Jan 2011

We haven't really met but I wish you all the best Deb. You have an amazing attitude.

david f
Posts: 12
Joined: Aug 2010

Hi,
My wife had a mastasized brain tumor as will and they operated to remove it. She did have the focused radiation in August and it has not reappeared since ( we got ct results today). Her chemo reduced her lung growth by 50 % and the experimental drug she is on now as a maintenance treatment (imetelstat) reduced it another 50%. I hope this gives you some more hope. I know it has been mindblowing to us that everything seems to working out well
Dave

mrsbotch
Posts: 377
Joined: Oct 2010

You are quite a woman and you will beat this once again. I have a gut feeling about it. You're too good a person for this CRAP to get you

You go girl and do whatever it takes

Love

Barb

luz del lago's picture
luz del lago
Posts: 452
Joined: Jul 2010

Deb,
You are amazing! Your insight and knowledge was one of the first I noticed when I first came to this site. You are straightforward and honest. I try never to second guess myself or look back and think, was that the right decision? The decision I am speaking about is my love's decision to get PCI. However, it was not mine to make. I think he put all information on a scale, and believed that he should not leave any stone unturned. He also had such a difficult time acknowledging this disease! But I know one thing, when I would share your posts, he really thought about what you had shared! I feel that the PCI and the last chemo really affected him in so many ways. And to think, the Monday he passed, he was to begin Topetican!
We are so unique, and each one of us can have such unique responses to treatment! I wish sometimes that he had not done the PCI or the carbo/taxel. I feel now that they were instrumental in lowering his quality of life.
Having said that, I believe that your Doc will have something up his sleeve for you. But the strongest believe I have is that your way of being will be what really makes a difference for you!

My best wishes for you,
Lucy

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Lucy
I have to agree with you.
I think his quality of life would have been better with out the carbo/taxol.
Just talking from my experience.
But we all grasp at straws !!!
I sure wish i would have not grab the straw.
Best of luck to you .
Prayers.
Greg

3Mana
Posts: 829
Joined: Aug 2010

Glad your lung scan was good, but sorry to hear about your latest tumor in your brain. Damn, why does this have to happen when you've been through so much? I wish there was something I could do. I guess it's a good thing that you're not really too worried.
Hey, how is your daughter doing? I just remember that she was having some problems. Hope she's okay cause you sure don't need that to worry about.
When is your doctor going to let you know what the next step will be?
Well, try and hang in there. The WBR might have given you a problem, but you sure are still thinking clear girl!!! Keep in touch! "Carole"

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

Your support is like a warm blanket, thank you guys!
3Mana, my daughter is doing great, she came downstate for a visit this last weekend and it was so good to see her! She may come home permanently in March.

I'm supposed to call my doc tomorrow to find out whats going on and what he and the neurosurgeon think I should do. Hopefully we can all agree on something!

♥ Deb

Dan620
Posts: 218
Joined: Dec 2009

Hi Deb, I am so sorry to hear this news, but you are one amazing woman and you will win this round also. When i first came to this site i was so inspired by you, soccerfreaks and nodawgs storys it made my battle with cancer so much easier to know what you all went through to fight this devil desease. Like i said before you are one amazing lady and you will beat this again and like it are not my prayers are with you. Hugs and best wishes ..... Dan

mamacita5's picture
mamacita5
Posts: 254
Joined: May 2010

You were the first to respond to my desperate first post in May 2010 when I wasn't sure "if I could even consider being called a survivor". You assured me that yes, indeed I was a survivor. Your words gave me hope when I was hopeless. You are a fighter, and a WINNER. I know you are not much into the prayer thing...but I'm gonna say one for you anyway!

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Deb, I just want to add another warm blanket to the many you have received already.

Hoping for the best outcome possible!!!

Yeah, doesn't the waiting game suck!!! I had to have another biopsy yesterday and won't get the results until Feb. 1st but somehow I'm not panicking like I usually do. I think I've gotten so used to the possiblity of bad news that I don't let it stress me out anymore.

Stay well and please let us know what your doctors have planned.

My best to you always,
Glenna

hope0310's picture
hope0310
Posts: 324
Joined: May 2010

Deb -

WOW, never was I expecting you to post this! That damn WBR sucks!! Once and done, and then what?!! Geez.....you are a survivor, and I know you and your docs are going to pull out a can of whoop a** and knock it for a loop again!!!

Please keep us posted, you mean alot to so many of us here!!

Be good to yourself!
Elysia

karenbeth's picture
karenbeth
Posts: 194
Joined: Sep 2010

I hope what ever treatment you need and decide to have does the trick. Sounds like you have been through the mill. I second the many comments here about you being an inspiration--your strength, knowledge, and no bs attitude.
I was curious what the targeted drug that was supposed to protect your brain is? My partner had WBR already and they are keeping an eye on some spots and I want to know what all his options are.

Karen

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

Thank you, I need all the warm blankets I can get ;-) The drug I was referring to is Tarceva. The prior drug and the reason I went on Tarceva, was a clinical trial drug from Exelixis (XL999) that also let the cancer in. I also had WBR, and it did do some damage to memory & concentration, and, well, obviously didn't keep the dogs out in my case =) My doctor is leaning toward surgery, it seems.

Deb

medi_2's picture
medi_2
Posts: 507
Joined: Aug 2009

I'm tossing in a quilt...you'll get through this just fine.
Medi

hope99
Posts: 1
Joined: Jan 2006

Hi,
I don't know you either but just finished reading a book about mindfulness and living with cancer...by staying calm, you are helping your body to heal, and boosting your immune system. You are and even better survivor than you think!!! Amazing attitude.
Hang in there, and I will pray for you.

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

I don't know how you hold up. I HATE THE WAIT AND SEE GAME. Once they tell me what I have to do, I am much better at dealing with it, but the wait and see is horrid. I hope everything goes well and remember there are new trial drugs everyday. They will find something for you that will work, I just know it.

mom_of_2
Posts: 30
Joined: Nov 2010

Sorry to hear the latest news. Best wishes to you, hopefully the wait won't be to long.

z's picture
z
Posts: 1262
Joined: May 2009

Hello, I am glad your lung scan looks stable, thats a relief. I hope your dr will tell you what the next step is soon, as we all know the waiting is probably one of the worst parts of going through tx, waiting for answers and results. I told my oncologist at the last ct I wanted my appointment with him the next day, and thats how we will do it from now on. I wish you only the best, and there must be a solution like you said directed radiation. I had IMRT for anal cancer and is that ever a sensitive spot, so why couldn't they do that with the brain, rather than the wbr. What about nano knife? I really don't know that much about it or if could be used in the brain. Whatever needs to be done to stop it must be done and will be done. I will be sending positive thoughts your way. Lori

annie60
Posts: 56
Joined: Feb 2010

I am so sorry I know the doctor will come up with a great plan. Know that I am praying for just that. You amaze me.

kelli1843's picture
kelli1843
Posts: 72
Joined: Jan 2010

You are in my thoughts and prayers for sure.

kelli1843's picture
kelli1843
Posts: 72
Joined: Jan 2010

You are in my thoughts and prayers for sure.

kelli1843's picture
kelli1843
Posts: 72
Joined: Jan 2010

You are in my thoughts and prayers for sure.

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

3 time's the charm! ;) Thanks Kelli, and thanks everybody, feeling nice and toasty now!

Deb

(@ DavidF: Imetelstat looks like another good new drug, putting it on my list ;-))

congoody
Posts: 74
Joined: Jan 2010

sorry I have been AWOL for weeks - went to Canada for Christmas and ended up staying due to my mother's sudden illness - she died a few days ago but on her own terms, in her own home and with her kids by her side - now that I am back online I find myself shocked and saddened by your news -
though we have not met... it is funny how human connections are made - feel quite upset by your news when I imagine how frightened and perhaps pissed off you must be - maybe I am projecting, that is how I might feel - let's give the neurosurgeon another chance to clean up what he/she left behind last time and hope for the best outcome - am not much on praying but send all best wishes and warm thoughts - connie.

gotalotonmymind
Posts: 1
Joined: Jan 2011

I agree, you have an amazing attitude and I also wish you the best while your waiting and through it all! God Bless you, I am new to this board, my husband has the cancer. I am paranoid and trying to learn all I can. But I think too that you are amazing, and I will be thinking on you, and including you in my prayers too. I am not as calm as you, I can tell.

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

(Stevie Ray Vaughan reference)

Neither of us believes that being good, even saintly, will save us, I know, but both of us believe that science can do some amazing things, deb, and it sounds as though you are continuing to attack this stuff, and that your docs are in agreement with that decision, all of which indicates hope, my friend.

No Will and Testament stuff from me, deb. I expect to be reading your entries here for years to come, knowing your strength, will, and intellect, and knowing they will prevail (along with the treatment options you choose).

Frankly, if you are like me, this brain stuff is about as scary as it gets. When they took out part of my right lung, I considered, "What could be worse than this?" and the first thing I thought of was the brain, even if it is NOT the most dangerous. And the thing is, even in the taking of part of my lung, I felt like they were removing me from me, piece at time. I cannot fathom what it means to feel like they are doing something of that sort to the brain.

I would be frightened. That you are 'staying calm' is a testament to your courage, sweet friend.

You are in my thoughts, deb.

Take care,

Joe

Greggriggs's picture
Greggriggs
Posts: 132
Joined: Dec 2006

Deb I can't imagine how scared you are.
But with all of us praying for you something good has to happen.

Even with out the prayers you they have to fix you up.
I don't know whether you noticed but you have a lot of friends out here.
I think every once in awhile a really good person is born and you are one of them.
So you just keep up that attitude and keep hoping an fighting.
Because all of us need you in our thoughts and lives.
Greg

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

I think I may have to print this thread and make all my docs read it before they operate! :-)

Actually, I'm just making the assumption that my doctor wants me to have surgery, seeing as he set up an appointment with the neurosurgeon, same one who did the previous tumor removal. In any case, the tumor is in a good spot (if there is such a thing!) & I'm sure it can be taken out without damaging anything vital ;-) I had absolutely no repercussions from the surgery last time, so I'm not as scared as you might expect. Nervous, but not terrified.

All your wishes mean a great deal to me ♥

Deb

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

When do you see the neurosurgeon?

It's the unknown that gives most of us anxiety.... hopefully after you see him/her, you will have some more facts, have a better idea of what's happening, and get some comfort.

Keep it up!

3Mana
Posts: 829
Joined: Aug 2010

Hey Deb,
Do you know when the surgery will be, or is it whenever you make the decision? You've gone through alot and fought through it so I'm sure you'll do okay. It's got to be scary though. If I lived near you, I promise I'd be there to help you through this next surgery.
I think about you and keep praying too. With all the support from everyone on this board, you'll be fine. Take care. Carole

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

Saw my oncologist today - he confirmed that my lungs are NED, even though my brain isn't =) He spoke to the neurosurgeon and, yes, he plans to do a surgical removal again as the tumor is in an easy spot. I have an appointment with him next week for an assessment & to set a date for the surgery.

Best part is that my onc is requesting tissue to send out and see if I have the ALK mutation, which will open up new worlds of chemo choices for me ;-) Primarily Crizotinib! He thinks I have a pretty good chance at having the mutation.

He did say that the GammaKnife is a possibility for later on, if I need it.

Anyway, it's all good, I don't look forward to being Ms Chipmunk face again, but I'll probably have a clean house for a couple of weeks until I can wean off the Prednisone that goes hand in hand with this surgery =)

I thank you all for all the good thoughts!

Deb

mrsbotch
Posts: 377
Joined: Oct 2010

Sound good to me Deb. I am so happy for you that there is nothing in the lungs.

barb

lekkerone
Posts: 199
Joined: Jan 2011

I am so happy for you that things are going in the right direction. That's great news about your lungs and I don't understand about the ALK mutation but apparently that's a good thing. I wish you nothing but the best....you deserve it. Diane

medi_2's picture
medi_2
Posts: 507
Joined: Aug 2009

Let me know and you can clme clean my house too! ;). So happy to hear your lungs are clear!
Good to hear from you, take care of yourself and be sure to post a Chipmunk Photo! hahaha

bradygirl
Posts: 31
Joined: Aug 2010

So glad to hear from you.Hope all goes well grateful you have choices!Your journey inspires me to never stop looking for these choices.God bless, MaryAnn

dmcl11
Posts: 22
Joined: Feb 2011

Deb i only found this sight yesterday but by looking around and reading posts if there is a hall of fame for this site you would surely be in it! I hope the best for you moving forward. dave

JohnBinDC's picture
JohnBinDC
Posts: 91
Joined: Nov 2010

Deb, I am so happy that your lungs are confirmed NED, and that the tumnor is in a good place for surgery.. I hope the ALK mutation is present and that leads to successful treatment with Crizotinib. If not that, then another treatment that is successful for you. You are inspiring and a fighter, and I am so glad that you are a consisnent presence on this board. I wish you the very best always and look forward to reading of your progress! Best wishes always!

John

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Deb, so happy to hear that your doctors have a game plan and that the outcome sounds good. Sorry you have to have more surgery but I know with your strength and determination the outcome will be great.

Sending positive thoughts your way.

Glenna

Notpinkenough's picture
Notpinkenough
Posts: 14
Joined: Nov 2010

Deb: I have not checked in for quite awhile. I am so sorry to hear of your brain met. You are such a wonderful, inspirational warrior - if anyone can beat this then certainly you will. I will be here pulling for you.

Chris

z's picture
z
Posts: 1262
Joined: May 2009

Thank you for updating us, your attitude is great, and it gives me hope. I am glad that there is a solution to the met, and that if need be, if ever, the gamma knife would be a option, but hopefully for once and for all the surgery will take care of it. I need my house cleaned too, it seems to be the last thing I care to do, but always feel better when its done. I am sending positive thoughts your way. Lori

pkaz53
Posts: 84
Joined: Nov 2005

Wishing you the best as you face more challenges in your life, so sorry that you have to go through this again its not fair but then again cancer has its own set of rules.
You have made a big impact on me as I wander through my journey with cancer and will continue to be an inspiration --May the great force in life look kindly on you.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network