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Vertigo - Is It Just That? Or a Stroke (TIA)? Or mCRC to the Brain?

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

7-years ago when I first got cancer and got out of the hospital, I began to get vertigo. The first time was so intense and I had no idea what it was, that I was scared out of my mind and thought for sure I was going to die.

Many hearing tests, diagnostic tests, and MRI’s etc, the doctors thought it might be Meneire’s Disease, which is an inner ear condition that drastically affects your hearing, and knocks off your equilibrium so bad, that balance was almost non-existent. It attacks every other year or so it seems, taking more of my hearing and giving me those horrendous bouts of vertigo.

The condition will finally come to a resolution when I go deaf in the one ear – then, the attacks stop. Nice to know if I live through cancer, that I can look forward to that. But, at least I won’t be dizzy anymore, LOL:)

The last 6-8 weeks, I’ve had over 20 episodes of this madness. It’s very debilitating as you can imagine. Kim usually has to come get me at work and drive me home, because I just can’t drive or steady myself too well.

Well, today I hit a crescendo and had the worst attack I believe I ever had. I was barely at work 30 minutes and BANG! I was just reading text on my work pc and everything went gaga and sideways.

When it’s real bad, you sweat profusely and get nauseous and throw up. Today, all of that, but it was so bad I could not open my eyes and when I did, it looked like the Indy 500 with everything whizzing by.

My co-workers witnessed it, although I was sitting next to them being quiet and pretending nothing was wrong…but they’ve seen spells before but not this severe. I think one of the guys went to tell my manager, who came into the lab shortly thereafter and found me sweating, wobbly with my head over a trash can, because I could not physically stand up.

I could tell they were kind of scared and said WE are going to drive you home, let’s go now. I could not walk on my own or keep my balance. One of the guys had to prop me up and I was wobbling all over, even with help.

It was so embarrassing and such a helpless feeling. They took me home and I got into bed, this episode lasted 10 hours, but the longest one I’ve had went 28 hours of total bed rest. It used to happen every week in the old days, but this year it has been happening EVERY day and sometimes 2 and 3 times a day.

In my time on this board, I have never used the word SCARED. I’m a veteran fighter after all and I’ve been around the block on more than one occasion.

So, I won’t start now by telling you I’m scared. Rather, I’m “concerned and apprehensive” after today’s go round. One’s mind can begin to wander on what’s really going on.

Colorectal cancer’s path usually involved colon or rectum – to liver – to lung – to brain, possibly stopping off at the bone as a detour.

I’m on whistle stop #3 in the lung and the brain has always been a big concern for me, ever since my cancer went to the lung. I used to talk to Jennie about the “Crazy Colon Train” in reference to the stops I mention above.

In the chapter I’m about to start writing, I’m going to pose the question, “Is there anything that you are scared of?” In there, I’m going to reveal the one thing that really scares Craig, Big Billy, or Sundance.

I’ve watched 3 fine folks from this board perish with mCRC mets to the brain. I’ve talked extensively at length with my onc about this most sobering topic.

There is NO CURE for mCRC mets to the brain. It’s not really even treatable. Primary brain cancer has a better chance than our cancers would. Just too fast growing and not enough wiggle room in the cranium.

You know what bothers me the most? Not so much that I could die and would die as a result if this is what it is. That would suk, but at least my ride would be over.

No, what bothers me is that I know that I won’t be the same person that many of you have come to know. That the one thing I’ve got left in this world (writing) would be stripped away and I would be walking zombie unable to relay my thoughts to you or anyone else. My voice would be stilled, my thoughts only a memory.

Okay, so that’s what really scares me.

We’re getting a referral from my onc for an ENT at the hospital so we can see what is going on. I guess if any of you would like to cross your fingers, I’m down with that:)

And this is the reason why I’ve been pushing on my book so hard these past 3 ½ months….I’m all too aware how the game can change and how limited an opportunity may exist.

It’s important to me to finish my novel and try and get it published, especially if I were to perish. This would be my legacy, my life’s work….and the last thing I could leave my friends and mankind to say that I was here – and tried to make a difference.

I hope it is Meneire’s, because that would be bad, but I would be alive. I’ve always tried and portrayed Superman type strength, so that I could shine a ray of hope to everybody and because I believed in myself and thought I could overcome.

It would sadden me to die now, before I had a chance to try for this book dream. I would miss all of you terribly.

As a make-believe “doctor”, I feel like I can diagnose and know what this is…but a part of me is still not sure. I’ve made some mistakes before – and some pretty big ones…..just ask “Angel” about that one.

Well, I just needed someone to talk to this evening. I’ll try and put this out of my head, LOL:) and get on with the business of tracking this thing down and seeing if we can come up with an answer.

It’s hard living your life each day, wondering if the wheels are going to come right out underneath you. I’ve been getting these spells despite taking Dramamime daily.

If this is not cancer, and Meneire’s, it’s just one more thing besides cancer that I must fight to overcome or at least deal with. The only real solution has been to get in a bed, close your eyes, turn the ceiling fan on, and be still, and ride it out until it passes.

I guess let’s just hope that is what it is and not a met. Last year, I wrote my "Farewell Post" to you in my head a 1000 times on what the last words I would ever ever say to you again, but have not put them into words on a page. That’s a post we can save until the time really comes.

If it’s not cancer then it’s something else….THIS DAY was a sharp contrast to the day I spent at the track meeting legendary John Force. I have no idea why I got THAT DAY "off" from vertigo spells, but I was being "given one" that day and that's why it was so memorable.

Why is that whenever Craig tries to smile, this dam* world does its best to slap that smile off my face?

Love – Craig

wolfen's picture
Posts: 1329
Joined: Apr 2009

My heart goes out to you and I will cross all fingers and toes in hope that this difficulty can be resolved in a very positive way. I hope so much the brain is fine and that maybe you are overworking by doing your job and writing the book in your spare time. The miracle "computer screen" being stared at all the time can sometimes do a number on some people.

I so agree with you that every time some people get a "leg up", something else comes along to knock them back down. Please take care and let us know what is going on as soon as you can.



lisa42's picture
Posts: 3661
Joined: Jul 2008

Hi Craig,

I'm sorry to hear what a time you're having with the vertigo. One of my husband's cousins has Meineire's & I'm not sure what she did, but it has been under control lately.
I will be praying for you, my friend. I can only imagine how upsetting and scary it must be. Since this is something you've experienced for a while, my guess is that it most likely is NOT mets to the brain, but something else going on. I wish I could do something for you, but all I can do is pray for you and let you know that and that I am thinking about you.

Hugs and prayers,

Posts: 1961
Joined: Aug 2003

So sorry to hear this, Craig. I have a colleague who has 'exceptional Meneire's disease' and I know how debilitating it can be. I hope your visit with the ENT goes well. I don't know how you -- or your docs -- would feel about this but I guess one option might be a brain scan. My oncologist recommended one a few years ago - i was asymptomatic but it was "just in case" (since I have metastatic disease). It was clear (well, I did have a brain there, thank god! but clear of any 'nasties'). Sometimes it is reassuring to RULE OUT something we are anxious about. Meanwhile, keep breathing in and out. And my favorite phrase I learned from this board: "feed the faith, starve the fear". We must try to believe in the best possible explanation/outcome until we receive any information otherwise. It's the only way.


son of hal
Posts: 117
Joined: Mar 2011

Craig- I have experienced episodes in the past (not so severe) that also had me concerned for brain tumors so I recognize your fears. One thing I can tell you is doctors only guess at a cause until they've either done many tests or only a few tests then try one thing after another until something helps. I had one bout that left me with Ptosis (lid lag) in one eye and doctors could not pinpoint a cause so they determined it was likely a virus. Yea right, every couple months the same virus... Bull.. I believe now it was likely Paraneoplastic syndrome due to the presence of cancer in my body. When you get an episode, I understand your desire to "ride it out" but there are things you can do to help the doctors figure it out. Asside from getting to a specialist while you are afflicted with this there is little a doctor can do in an examination afterward that will help figure it out. On the other hand, you and your wife can do some tests to narrow the field of possibilities. I wont go into the details here but I will share an excellent link with you that may be of some assistance. This page has some of the best info on Vertigo I've found. http://www.merckmanuals.com/professional/ear_nose_and_throat_disorders/approach_to_the_patient_with_ear_problems/dizziness_and_vertigo.html?qt=dizziness&sc=&alt=sh
So, while I know it's scary, you never know it could be stress, your blood pressure, medication you're on, Paraneoplastic syndrome, a "recurrent virus", or several other treatable problems. Maybe get a scan for piece of mind but do some detective work yourself if you can. Don't let them treat something they're not 100% sure of since it might make other things worse.
Best of luck to you my friend, keep smilin, keep writing and keep optimistic. When you stumble there's always gonna be someone here to catch you and when you get dizzy you can always Lean on us...
Take care, CJ

ron50's picture
Posts: 1729
Joined: Nov 2001

To get the same result ,and thought it was fun. I was just about going to get fitted with training wheels last year. I seemed to spend most of my time on the floor. I suffer from constant tinnitus and although they constantly put me thru hearing tests it shows nothing. I have been a mechanic all my life and I half hear and half feel vibration in machinery so I tend to show no problems with hearing. I found that If I take too much Omega three (fish oil) it makes my vertigo a lot worse . My standard treat ment is two anti-histamines a day. I had my worst attack last year .I put me in hospital for around twelve hours. Everytime I raised my head I threw up. It is like being seasick on dry land. If i was not able to get it under control I was quite prepared to end my life. You have my deepest sympathy. I hope you can find a control,Ron.

Posts: 428
Joined: Jul 2011

Craig, I just wanted to let you know I am sending positive thoughts your way for both an end to these episodes and where they are coming from so you have some peace of mind. Lisa

Posts: 520
Joined: May 2011

Praying for You and thinking of you. You have a gift and that gift of writing needs to be here spreading the information and support for others.

Buzzard's picture
Posts: 3073
Joined: Aug 2008

He had a very rough time of balance to the point that it made him deathly ill and would fall over at the drop of a hat and what brought it on most of the time would be a simply "quick movement" of his head....They did find that the (bear with me for these will be redneck terms for lack of medical nomenclature expertise) that his equilibrium tube was clogged and not allowing his "balance fluid" to move as it needs to fluently enough and causing it to throw everything off severely.....He made an appointment with a surgeon in Memphis Tennessee and they went in behind his ear drilled a hole and "rotor rooted" out his "tube" and he is now fine, has started driving again...yes, State of Kentucky pulled his license until he was proven "repaired"......but he is doing fine as frog hair and all is well......my best to you buddy....buzz

Posts: 372
Joined: May 2011

They'll get it figured out. I too know several people with Meniere's and it can be really debilitating and frightening. One friend could not walk down a hall she was so disoriented. They were able to get it under control, however, with diet mostly and they are good now. Just keep on the docs until they figure out the source.

mukamom's picture
Posts: 402
Joined: Oct 2010

While reading your post, I thought, "wow, this sounds like my husband"..though not as extreme as you.. We mentioned his balance and dizziness probs to the onc yesterday and he ordered an MRI of his brain. It's hard not to borrow trouble, but try not to.

Am hoping you get some answers quick.



Fight for my love
Posts: 1530
Joined: Jun 2009

Hi my buddy,I am so sorry to hear you have been suffering so much from vertigo.I am pretty sure it sucks a lot.A secretary I knew when I was in graduate school had meneire's.She suffered a lot from that,I saw her once with pale sweating face.But after a while,she got that under control,at least several years ago when I left school,she was in great health.Another thing I want to mention to ease your mind is:(from my common sense),it can't be crc in your brain if it has been there for 7 years.I am not a doctor,I can't give you an accurate diagnosis,just a "diagnosis" from my common sense for you.:)

My brother,I have been praying for you everyday,it hasn't stoped for one day since I knew you.Best luck to you,hope for the best for you.Take care.

LivinginNH's picture
Posts: 1458
Joined: Apr 2010

Oh dear Craig, I'm so very sorry to hear that your vertigo has gotten that bad. But I can't imagine that it would be brain mets since you've had vertigo for seven years. It could be that you're simply spending too much time on the computer... Whatever the cause, I hope that the doctor can solve the problem and get you back on your feet.

Big hugs are going to you (()), Take care, Cyn

Annabelle41415's picture
Posts: 6715
Joined: Feb 2009

That something I've never experienced but it sounds just awful to have to live with. I'm hoping that they can find out what is wrong with you and help you out. Maybe like Buzz said with that guy at his work to drill something and make it better. Hope you find out what is wrong soon and I'll keep my fingers crossed.


Patteee's picture
Posts: 950
Joined: Jul 2009


My bro-in-law had Meneirs and is almost totally deaf. Hasn't had an attack in like 5 years- Once that nerve dies, then the problem is gone. His attacks were so horrible- my sister described them as so violent- he would projectile vomit in between moaning. All he could do was lay down on his side. She would give him suppositories to try and get the vomitting under control. I also had a professor in college come to class with nasty black bruises all over his face. He also had Meneirs, was walking down a flight of concrete stairs, had an attack and felt like his body was thrown down the stairs.
I also suffer from vertigo issues, that seem to be better now. Mine is not Meneirs! You have my total sympathy Craig, everything I have understood about Meneirs is it is HORRIBLE

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

I really don't think it's leaked to my brain yet - though there are many of you who might argue that point, LOL:) NO laughing:)

The spell I had yesterday was the most powerful one rivaled only by my first experience. In the years between, they have been pretty bad.

What got me wondering was the FREQUENCY of these attacks. You're almost snake bit every morning when you drive away to work - wondering when it will strike and how you are going to get home or having to take Kim off her job if it falls on the wrong day and she's night shift. Otherwise, I ususally wait till after 5 and then she picks me up.

And when I started I was not stage 4 and the cancer was rectal based - now, I'm a 4 and it's been in the lungs and my last tumor was right up against my spine, which is the highway to the brain.

With this happening nearly every day and several times a day sometimes all throughout the day - well, you just sort of wonder, you know. Conditions are different.

I've seen it strike here on the board quickly, quietly and deadly. None survived it, so I think caution is a good approach and it's time to revisit this topic and see if I can put it to bed, or at least get it back to where I can live with it once again.

Still pending a reply from the referral. I'll have a talk, do the tests and ask for an MRI. I would feel better ruling this out. We did one years ago and found nothing, but at least not seeing a mass, would lead me back towards Meneire's.

I'll shag this fly ball down and throw it back to home plate when I know something. Looks like next week at this point if I can get in then.

It was just nice to talk with you. The post seems relevant and it's interesting to see I'm not the only one. It's always some kind of comfort when you know you're not the only one.

It comes about every 2 years - stays awhile - knocks me down - and then splits. It's been 2 years since I've even had to think about it. Now, dizzy every day, it's all that I can think about.

Buzz's example of his buddy sure seemed right on to me. Wonder if it could be something like that. One way or the other, it's a wake-up call to me and I need to pursue this and run it down with the same fire and intensity that I fight my cancer with. I thought there was nothing that could be done. I know there is NO cure, per say, but maybe something like that or something else would help me.

And trying another doctor and getting a fresh opinion is always good, so we might yield results this time.

Guess I'll put my "shovel" away - we can bury me another day, LOL:)


pepebcn's picture
Posts: 6352
Joined: Aug 2010

I think your brain is still safe and sound ,hugs dear mate!

Posts: 160
Joined: Mar 2011

Craig, hope you get some answers and some relief soon. Couldn't do without reading your
posts. You always say the right things. Prayers are with you, Brenda

thingy45's picture
Posts: 633
Joined: Apr 2011

I have Vertigo for over 7 years. Way before I was diagnosed with col. cancer. \it is debilitating to say the least, you walk like you are drunk, without the pleasure of having the fun. It has to do with the inner ear something like sea sick ness etc, I am taking Serq 8 mg twice a day and that helps. It started up with me again because I was taking Melatonin as a sleep aid. That probably triggered it.
I also had thoughts of mets in brain etc. Apparently it is heriditary, m y mom had the same and so does my daughter who also has MS and Trigiminia Neuralgia.
We seem to have Vertigo all on the left side.
Hang in there, it will go away.
hugs, Marjan

Kathryn_in_MN's picture
Posts: 1258
Joined: Sep 2009

A good friend of mine started having more and more severe vertigo issues during her breast cancer treatments. It got really bad when she was doing radiation and had an infection. She was sent to the ENT and some other specialists. The troubles went on for several months without a true diagnosis. But now she rarely has spells. Once in a while it gets her, but most of the time she is fine. I hope whatever is causing this for you is similar. They think it is some nerve damage from one of the chemos, or an infection she had that may be the culprit.

I hope you have less tough days and more better days coming soon.

jjaj133's picture
Posts: 869
Joined: Mar 2011

Craig, i am so sorry to hear this. My daughter has episodes and i have had them. Though not near as bad as yours. Mine is triggered by too much computer work. looking back and forth from screen to whatever i am working on. My daughter's is triggered by stress.
there is just no end to the things our bodies can come up with. Meanwhile, You just keep on smiling, we are all waiting to read your book. so smile when you think of us, all lined up for your first book signing.
good luck my friend, sending prayers for a good outcome.

coolvdub's picture
Posts: 410
Joined: Aug 2009

Hi Craig,

Really sorry you are going through this too. I had Vertigo problems not nearly as bad, but they were able to do some specialized manipulation of my head and then I had to stay mostly upright for 3 days, couldn't lay down flat, which was a problems since the day after I had an MRI. Did the MRI and the short time laying down flat seemed to not cause any problems.

I was having a hard time getting out of bed without falling and my balance was horrible. I couldn't even close my eyes in the shower without bracing myself, so I wouldn't fall. I will go through my paperwork and see if I still have it to explain what they did.

Wishing you well.


Posts: 372
Joined: May 2011

Don, your story reminded me of my mother's situation a year or so ago. Something about needing to retrain the inner ear or something to know the difference between lying down and standing. She just had to do some very simple things before getting out of bed in the morning. I'll have to ask her if her vertigo went away. She would actually throw up from the dizziness--since she hasn't mentioned it, I assume it is better. Will check it out and let you know, Craig. She, too, had a paper with some very simple things to do each morning.

Aud's picture
Posts: 480
Joined: Oct 2009

I am sorry to hear that you are suffering with vertigo. It is an awful thing to have to deal with. I have had it, not nearly as bad, years ago and have had short attacks since then. Years ago I went to an ENT doctor who thought it may have been benign paroxysmal positional vertigo (I think I've got that right) and it sounds that's what Don may be referring to. In my case, by the time I got to the ENT it had already resolved. But he had told me that if it occurs again, to let the receptionist know I need to see him right away. This doctor had helped my brother-in-law aferwards. If I remember correctly, the positioning of your head (which is done along with positioning your whole body; otherwise, your neck would be in trouble), will be diagnostic and treatment at the same time.
It's good that you're going to see an ENT doctor and I'm sure that's one of the things they'll be looking at along with other possibilities. The other thing that Clift talked about sounds interesting. So I'm hoping that it will be one of these easy fixes.

And, Craig, I am sorry that you have to even think about brian mets. This cancer changes the way we look at things in so many ways. My niece, who was diagnosed with thyroid cancer, is the most optimistic person I know. Someone who really has a good "attitude" as Kerry would say. She and I were talking one day about our respective residual effects of treatment, and she said "Aunt Audrey, doesn't cancer suck? There's always going to be something."

Even so, we find things to be grateful for. And we've had that discussion here before and I hope many more times.

But the matter at hand now is for you to have some good diagnostics and get at the root of the problem and some help with it.

Holding you in the Light, Craig, for good health and a helpful visit with the ENT.

coolvdub's picture
Posts: 410
Joined: Aug 2009


Aud is correct I was treated for Benign Paroxysmal Positional Vertico or (BPPV).

I found my paperwork and if you would like I will scan it and send it to you in an email or I can post it up on my online photo account for everybody to download copies of the paperwork Kaiser gave me for Definition,symptoms and so forth. I even have a paper for home treatment. Although your sysmtoms were more severe.

Here is the symptoms section.

The signs and symptoms of BPPV may include dizziness or vertigo,lightheadedness,
imbalance,nausea and/or vomiting. The sysmptoms can come and go, with symptoms commonly lasting less than one minute. Symptoms may last 6 weeks or may last a lifetime. It can be highly disruptive to a persons life.

Hope this helps, let me know if you want the full info.


Sundanceh's picture
Posts: 4408
Joined: Jun 2009

I was tested for positional vertigo a few years back and the results were inconclusive at that time. I met with 3 ENT's and while none of them ever officially "confirmed" Meneire's, this is what I think it was then - and what I think it is now.

Because, the positional vertigo differs immensely from Meneire's Disease and the vertigo effects. For one thing, my hearing changes drastically during the months I have it - and then when it's all over, I get a degree of hearing back or it becomes less muddled following it's depature.

And second, the duration of the spells differ from pos vert. I would love to have up to or less than a minute.

But for me,

Mild Spells = 2 to 4 hours.
Bad Spells = 4 to 10 hours.
Worst Spells = 12 to up to 28 hours.

And some of them are wobbly where I can lean on furniture or walls to move around, but if the spells are bad like the other day, I can't walk, sit up, or even open my eyes.

This past week was the worst hands down.

When I get my referral, I'm going to tell the guy we're starting over from scratch and looking at this with my fresh new eyes from the new ENT and me, allowing them to test whatever they need to test.

The home treatment sounds interesting...you can PM me that if you would like. I'll let you know if the other would be pertinent to my case or not after the doc gives me the once over.

I can't thank you enough for your concern - and you too, Audrey. Thank you everybody. I was slower today, little unsteady, yesterday was better. Hope I can hang in there next week, my boss is probably a little PO'd or irritated with me as I've had to leave work on more than one occasion.

I just hate it when the body "don't" work right:)


jams67's picture
Posts: 927
Joined: May 2006

Google - Epley Maneuver
I've had vertigo twice and Don has had it once before. This was a total cure for us. Hope this is your problem too.
Jo Ann

coolvdub's picture
Posts: 410
Joined: Aug 2009

Just a short note, I added the scans of the BPPV info to my expressions page for anybody that's interested. Hopefully you can right mouse click and do a save as to save the image to your computer.


jams67's picture
Posts: 927
Joined: May 2006

Did you check this out? Hope you make it to CP9! We will be there Wednesday and really looking forward to seeing you.

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Yes,I did read up on the Epley manuver. I read about positional vertigo and the vertigo associated with Meneire's disease. Clearly for me, it's Meneire's all the way, no question about it...all of the conditions or most of them fit that bill.

These spells go for months and then go away...I was having it every single day for awhile...and then the last 6 days, I've been vertigo free...like the curse has been lifted as they say. I'm cautiously optimistic, we will see.

All aboard for Chicago...we'll be on the doorstep soon....and for extra good luck - my scan just came back clean too...that's # 2 in a row in the last six months:)....time to have some fun now...look forward to seeing you and Don again as well as the rest of the cast.


plh4gail's picture
Posts: 1238
Joined: Oct 2010

Aww Craig...I'm so sorry this disease has hit you so hard time and again. And then the other stuff to top it off! I'm hoping for a "fixable dx" from that ENT appt!

Hugs, gail

tootsie1's picture
Posts: 5065
Joined: Feb 2008

Hey, Craig.

I can "hear" the fright, and I do understand. We all do. Whenever anything seems the slightest bit off, we think "IT" is back again. Just praying it's not.

Bill had a strong bout of vertigo a couple of months ago, and it was terrible.

I'll be praying for you and waiting anxiously to hear what you find out. I refuse to think it's going to turn out to be your biggest fear. You need to be here to finish your book and keep inspiring all of us.

You're always on my prayer list, but now more than ever.


robinvan's picture
Posts: 1014
Joined: May 2007

Hey Craig,

So sorry to hear about your continued vertigo problems. I hope you are able to get a definitive diagnosis and find something that helps reduce the symptoms.

As another 7 year survivor I know how easy it is to think "mets" or "recurrence". It is impossible to prevent such thoughts from coming into our consciousness. Best not to dwell on them of course. But you know that! My thoughts... you have been having these symptoms for a long time, 7 years. If they were indeed caused by mCRC tumours in your brain my hunch is you would have left us long ago. It is most likely something else.

Save your farewell post for some day long, long in the future!

Your Longhorns are looking good. Too bad about the Oklahoma trouncing. Ouch!

Your Canadian Bro... Rob; in Vancouver

Posts: 3
Joined: Apr 2012

I am new to this board, but have been dealing with crc since my husbands diagnosis late nov 2010 at 39 years of age.Since his diagnosis, he has endured chemoradiation, then cancer advancement to the liver(4 lesions), liver wedge left side and portal vein embolization to right liver and then in October 26,2011 liver advances to both lungs so radical surgery on Oct. 28, 2011 (11 hours) to remove all but 27% of his liver, vats to left lung and wedges and lower 1/3 of right lung removal, only to receive news one week later that more nodules in both lungs...From this surgery he passed out, developed severe plural effusion and we almost lost him, turned yellow and took 2 months for that to go away, then had a major seizure on Jan. 22, 2012. He has been on folfox with avastin,now currently on folfori (which he does every 2 weeks and has had 4 treatments), only now to tell us life is grim. Gamma Knife was done 2 the lesions on Feb. 7, 2012 and mri showed success.We are a family of 5, my husband and I are 40, with 3 girls, ages 14,11,7. I just found this forum today and have just cried knowing that sometime soon I am going to loose the love of my life, my best friend, our daddy, to this dreadful disease. He has been such a fighter, and to look at him, you would not know that he is so sick. I dont know how we will survive without him, I truly dont. Life is so unfair, and everytime we thought he was making great strides, the doctors told us otherwise. However, still cant get the 2 doctors voices out of my head, his cancer is stage 3, but treatable and the lung doctor in October told me, with a great big smile on his face, that my husband would lead a long successful life and would walk all 3 girls down the wedding aisle one day and see his grandbabies...surgery was a total no success, NED, now you go rest and this nightmare will soon be over for you! Tears of joy, only to come crashing down as the days went by and here i am on this forum, and learn that sometime this year, we will loose him...

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Welcome to the forum:)

Wow, this is a hard story for sure. You've both had your hands full for quite a spell.

A couple of things - you mentioned GammaKnife, so he does have mets to his brain? And there have been a couple of treatments and the scan showed good, did I get that right?

It sounds like despite the surgery and treatments, new tumors appeared in the lung? Sounds like the liver is good at this point.

Folfiri is good at shrinking and controlling tumors, so don't give up hope just yet. These treatments could be successful.

For mets to the brains, the forum has one case (TaraHK) who just went through brain radiation and a combination of Folfox and Folfiri and is now adding Gemzar to the mix. She's doing remarkably well and her case sure has surprised me. The other 3 folks we had did not fare as well.

So, I'm watching Tara's case with great interest, as that is my greatest fear. She's doing pretty good from what she tells us, so that's a hopeful situation right there.

I know you're scared - and have every right to be. Wouldn't be normal if you weren't. But, we've got time to raise the white flag later, not now, not yet. Let's see where the chemo treatments take him.

And keep coming back here as we'd all like to meet you...even if we can't directly help, we can be of emotional support and a confidante and friend to you - we're pretty good about doing that.

Just keep this thought in mind as you go forward...

"There's many a slip - betwixt the cup and the lip."

Meaning, it isn't over till it's over...stay in the fight...keep coming back and talking to us...bring us some info...and we'll try and help if we can....or at least give you a big hug...you don't have to go through this alone....I just wanted you to know that.


Posts: 3
Joined: Apr 2012

Thanks Craig for the response. I fill so overwhelmed and alone. I never imagined life could be so hard, but very difficult it is.We find out on the 19th how things are going for Tom, ct, mri, xrays, His doctors have repeated to us, to live this next year to the fullest, and how can we do that, Tom is receiving Social Security but all that goes to pay for cobra insurance, for I am self employed, but trying to find another job. To sum up our lives, I was diagnosed on March 20, 2007 with Stage 2b Hodgkins Lymphoma-6months of treatment, then Nov. 2007 diagnosed with Stage 2 Thyroid Cancer, then December 17, 2008, 4 inch mass detected by PET scan on the top of my heart so at the age of 38, I had open heart surgery and removed the 4 inch mass along with another 1 inch mass, however, these 2 masses turned out to be side effects of chemo.We thought that those 2 years were the worst, but my husband was my biggest supporter. Our 3 grils are 14, 11, and 7 and Nov. 2010 Tom was diagnosed with stage 3 rectal cancer, and the doctors was so positive all would be fine. Here we are and now he has underwent chemoradiation, left wedge liver surgery, 11 hour total right liver removal with vats to left lung and and lots of wedges and 1/3 of right lobe removal on Oct 28, 2011 only to be told ONE WEEK LATER, there were more lung nodules. His last ct exam in Feb. showed 2 quarter size lesions in liver 2 new small ones, multiple new lesions in both lungs along with growth to existing ones. I am so angry, I dont understand why. Our family has already been thru the cancer life with me, and now Tom, we have been honest with our girls, but all they know is cancer.I dont know how we will make it.I cry so often, and to think of our future, I dont know how we will be able to survive. Our girls have lost so much of their childhood to cancer and to loose their daddy too, along with how am I going to provide for them, without having to work multiple jobs. I know the cancer Tom has is so aggressive, he is kras mutant, was suppose to have temporary ileostomy with reversal, now when his rectum leaks out dark mucas the doctors just change the subject, tell him chemo is knocking stuff loose, but he has the urge to go to the bathroom which depresses him with this nasty leakage along with blood sometimes. I know I have said alot, but there is so much, and I juist dont have anyone to talk to. Ik dont want to be a widow, I dont want to loose my best friend, husband or daddy, but each day I see how weak he has gotten. I dont want him to suffer, but I dont want to loose him.I keep praying for a miracle but after Toms seizure in January I think that was the moment I lost myself and any strength that I was once had. I am tired of the doctors asking me why do you continue to cry, you know that we were only trying to prolong his life. I wish we could go back and have a do over, and went to MSK instead of the 2 hospitals we went to, one being the biggest cancer hospital, wish we offered an HAI pump, but instead jhust chemo and surgury. Dreading what the hospital tells us next week, praying my prayers will be answered, and the team of doctors will just be amazed at Toms health. Peace to you. thanks for listening. TG

Sundanceh's picture
Posts: 4408
Joined: Jun 2009

Your story is heartbreaking and brought tears to my eyes...I can feel the pain and sorrow in your words...your family has indeed been through alot and enough should be enough.

I know we often times look back and wonder "what if." Sometimes, it is good to do that as it provides us with the moral compass to try and not repeat the same things we did before. But, it can hurt you too - brings you too much guilt about what you did or didn't do at the time.

The bottom line is you did the best that you all could do - at the time that you had to do it. Nobody here can ask anymore from you - or ourselves. I've made a couple of major blunders in my journey that put me in a bad position - and could have been fatal if it had gone unchecked.

I use those experiences to remind myself to not go that route again...but mistakes are made not only by us but by our medical teams - nobody really means to do it, it is an imperfect science.

You've been through the wringer...it's only understandable that you would both be upset with feelings of depression...if I were your husband, I would be feeling the same thing, no doubt. It's the hope that keeps us going - and when we lose sight of that - we lose sight of ourselves - and that can be a scary place to be - a place where you all find yourselves at right now.

All of your feelings are just calling out to me right now - I'm having to dry my eyes as I write you - I don't think there is anything that I can say that will heal your wounds...BUT, you always have me to talk to when you need to...plenty of other fine folks here too that will lend you a shoulder and an ear.

Nobody wants to lose what they've got - what they've worked so hard for - what they spent a lifetime building their lives around. So, your thoughts on losing your husband and what you and your family face are all real and valid concerns.

I'll certainly be interested in what the doctors tell you next week..."Prepare for the worst - but hope for the best." That sounds corny and frivilous but sometimes when that is all we have - that is all there really is.

We can't go back - we can only move forward - armed with what we've learned and a plan of action of some type, either proactive or palliative.

Lastly, I know you're angry - you're angry at what you cannot control - and what life has thrown at you - and how you will deal and cope with the issues you find at your doorstep. No easy answers for sure...your daughters, while they may have lost some childhood innocence will undoubtedly end up as strong women from what they have learned from both of you.

That kind of lesson is priceless, though it comes at with a high price to pay. But, they will have undergone a transformation that many of their peers might not have - and that puts them to the head of the classroom for 'real-life' applications.

With a heart full of sorrow, I wish I could give you more guidance and direction. I'll just stop here for now until we know more. I don't want to put the cart before the horse...you may need to talk again at a later time.

Thanks for sharing your thoughts and feelings - they are very touching and poignant - we try and see cancer in all of its abstract forms - but when you drill down past that and get to the people - then that's where it gets much realer - and where it hurts the most.

Sending you best wishes for your consult next week...


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