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First long time coming. Need some encouragement

Chajones
Posts: 13
Joined: Jan 2014

 

I was diagnose with stage III in March of 2012.  I had surgery to remove 1 foot of colon.  I recovered very well.  My new colon shape took some getting used to but it worked out eventually.  I started chemo right after and finished in the fall.  The scan showed NSD.  The three month scan was all clear, 6 month clear, 9 month was an issue.  There were two tiny shadows on my liver.  An MRI showed a dozen tiny tumors, with the largest being a whopping 1 cm in size and most being a fraction of a cm.
Back to chemo, this time with avastin.  We scheduled 12 sessions.  After six we did a scan and the scan was clean.  I finished the protocol and the scan was again clean.  That scan was at the end of September.  I didn't se it until my appt in October.  Then I took avastin only once every 3 weeks.  
This was great because it gave me a sense that I was actually doing something to combat the cancer instead of sitting around and waiting for it to return like last time.  I did avastin one in October and then twice in November with the last session being November 26,2013. I did not have any insurance in December so the doctor said it would be ok to skip the one treatment I would have and see him the first few days of January.
 
So here we are and this is my situation.  I saw my doctor yesterday.  He Sid all my blood work looked great and we need to start with a ct scan.  He also requested my KRAS from my original biopsy.  I spoke to him and said if its back are we back to the original treatment?  Which in my eyes was effective.  After all I went from all of these mini tumors to NSD.  If the scan comes back showing growth he wants to change the treatment.  I know these combinations seem like more of an art than a science so is this the right move?
 
I am a nervous wreck.  The scan may come back NSD again for all I know.  But after month's on acceptance, treatment and rest I feel like I've just jumped back on the roller coaster.  I won't be right all week waiting from my scan on Monday to my drs appt on Friday.  I am so scared this scan will show the mets are back.  Why?  How could I go for so many o
Months feeling good, sleeping well etc., knowing this scan wild come and then begin to fall apart even before the dang scan even occurs? I feel like a real nut job right now and my wife would tell you the same. Lol
 
Truth is I'm not afraid to die.  Yes it sucks but we all must go.  But I am afraid of leaving my two little boys ages 8 and 5 without a father. My father chose to leave when I was little.  I swore I would never do the same.  Now I may do just that and leave them without a father.
 
Someone out there please tell me I can live with this disease.  I am strong.  I've been doing simple hikes with my two little boys.  I wrestle with them nightly, picking them up tossing them around.  I can clean the house, do groceries and all the household chores.  Someone please give me some hope today, because I'm low on it and for no good reason.
Chelsea71
Posts: 1170
Joined: Sep 2012

If  your cancer is only in your liver, you need a liver resection.  It should be relatively simple for a liver surgeon to surgically remove two very small tumors from your liver.  This could be a cure.  Chemo alone will not permanently rid you of those tumors.  They may disappear for a while or not show up on scans but they will very very likely return.  If the tumors are surgically removed with clear margins it may not return.  Do you have have cancer elsewhere?  Lungs etc...  If not please inquire about surgery.  Tumors developing in the liver after a colon resection is common.  It doesn't have to be a death sentence.  I'm also confused as to why your onc would want to go right to Erbitux?  (this is why he/she wants to know your k RAS status).  Have you done both Folfox and Folfiri?  Where are you being treated?  Sorry for all the questions.  It's just that your situation doesn't sound that bad.  Unless I'm missing something, you should be very hopeful that something more can be done for you.

 

Chelsea

Chajones
Posts: 13
Joined: Jan 2014

Chelsea your reply in itself brings me a lot of joy.  I don't know if I didn't type correctly but it had 12 little tumors spread around not just 2. So while I wanted to ask a surgeon I didn't.  I went back to chemo and avastin which was very effective in shrinkings them away.

 

Yes he wants my KRAS for exactly that reason,  I feel l Ike the old saying, a surgeon cuts, an onc wants chemo etc.  But I also want to ask if avastin was being effective, why not go back to avastin until the avastin is no longer effective.

 

I think another question I have is how much of a liver you can live without?  I have read stories recently of people losing60% of their liver and doing ok.  I believe I remember people having even more removed.

 

As of today I have not had any mets in any other area of my body.

 

I am being treated through blue ridge cancer care.

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

There are a lot of people on this site that have had successful liver surgeries.  Chelsea is right that it is a possible cure.  Also the liver can regenerate itself, so 2 or 12 mets in the same area should be no big deal for a surgeon to remove and you to recover from. 

Avastin just keeps blood vessels from growing around tumors, it's not cytotoxic like FOFOX or FOLIRI, so it cannot be used to "cure" you.  You'll need to be off Avastin for at least 8 weeks before surgery to help with healing. 

There are many of us, myself included, that fall apart waiting for results of our tests.  I think it's natural as no one is hoping for a positive scan, ha ha.  This is a great place to find support.  Many of us have been dealing with cancer for multiple years and are very helpful.

Good luck and keep us posted!  Traci

Chajones
Posts: 13
Joined: Jan 2014

Traci thanks so much.  Yes I just hate that I didn't pursue a surgeon earlier.  The meta are so small.  Some less than 1 mm idiameter.  I mean I know it sucks there are so many but they are so small. And I've read about the burning o freezing methods that might also be successful.  It is not too late I think. The avastin/chemo  did do its job and shrunk the suckers.  I have been off of avastin since November 26 so coming into that time period where surgery could be done.

 

Also wanted to mention that through this process my liver function including that revealed through blood work has never been even a tic out of normal.  In other words it has functioned normally throughout.  

janderson1964
Posts: 2215
Joined: Oct 2011

Welcome to our family. You can live with this disease. I have been stage IV for over 8 years. Its not easy but you said you are strong so you will be fine. Your anxiety and fears are completely normal. I still experience it even after having over 50 scans. Traci is right. If it is back up in your liver I would see a liver surgeon. I have had 3 liver resections. I have come to trust my liver surgeon more than any of my doctors. In fact he is the only doctor I am seeing for scan results.

Chajones
Posts: 13
Joined: Jan 2014

Wow that's a great story!  I just assumed it was not operable since theoncologist said so.  You guys have made me understand I have to at least see a surgeon.  I will start looking Monday morning.  I would like to go to UVA.  I have a friend who is now a pancreatic cancer survivor!  He's my rock.

hippiechicks
Posts: 509
Joined: Sep 2012

My suggestion to you is to follow your gut.  If it is telling you to get a second or third consult ... then jump on that and do so.  I would suggest sooner rather than later.  If your feeling UVA is a good choice for your location ... then get there my friend.  Do what you need to do to fight this while those suckers are small!  

 

I agree with all of the above advise ... cut out what you can!

 

My best to you in your journey! 

janderson1964
Posts: 2215
Joined: Oct 2011

I saw you mentioned UVA. I assume you are from VA. I live outside of Richmond and had all of my liver surgeries at Virginia Commonwealth University MCV hospital. PM me if you want the names of some surgeons there.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I def agree with the idea of a 2nd (or even 3rd) opinion.  And if it is at all possible, you should be talking with an experienced liver surgeon.  I have found that my oncologist doesn't really understand what all is possible with surgery, and I've had much better results working primarily with my surgeon.  Surgery is really our only shot at a cure (versus remission), so it's worth the time to find someone who is willing to give it a try.

Pls keep us posted on how you're doing!  This is a hard road to walk, but we are here to support you in your journey.

Hugs coming your way~Ann Alexandria

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devotion10
Posts: 631
Joined: Jan 2010

But ... I agree with you that you need to get a second opinion from the University of Virginia Cancer Center which is a designated National Cancer Institute.  You mentioned in one of your messages that your oncologist said that surgery is not an option for you ... but, you also said you had no evidence of lung tumors. Please consult with UVA as soon as possible.  A second opinion could make all the difference in your care.

Peace. ~ Cynthia

UncleBuddy
Posts: 1019
Joined: Aug 2013

What is the difference if you have mets in both the lungs and liver? Do they not want to do surgery if you have both? I'm still learning.

Lin

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annalexandria
Posts: 2573
Joined: Oct 2011

then the assumption is that the disease is systemic, and needs a systemic approach like chemo.  The cancer cells are moving through the body via lymph nodes and the circulatory system, and picking bits here and there to remove doesn't solve the root problem.  And you have to be off chemo for a period around the surgery, so that can give the cells a chance to really get going.  So from what I've read, if you have one or two spots in a single organ, surgery is still a good option, but if multiple organs are involved it's very hard to find a surgeon who will be willing to operate.

Chajones
Posts: 13
Joined: Jan 2014

Thanks everyone!  I am going to start my search for a liver surgeon Monday.  My scan isn't until 630 pm.  You have given me so much hope and advice in one day.  Why did it take so long for me to find this place?  

 

Despite all that's been said, I want to hear more!

UncleBuddy
Posts: 1019
Joined: Aug 2013

Good luck in your search for a surgeon. Stay positive!

Lin

UncleBuddy
Posts: 1019
Joined: Aug 2013

I wasn't sure how it worked. My brother's onc is doing chemo and will re-evaluate later on. He has a 3 cm met on the liver and 5 nodules on the lungs. He has had so many problems over the past monthor so, so he hasn't had a chance to even finish his chemo. It seems to be a long, slow process for him. Again, thanks for explaining it to me.

Lin

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I also wanted to mention that you are absolutely right that the majority of surgeons will NOT touch you if you have mets to the lungs and other mets.  I had to do a lot of "shopping" around with the help of my oncologist to find surgeons (my first surgery involved three different surgeons, each specializing in where my tumors were, a GI surgeon, liver surgeon and urologist surgeon, each taking turns during the surgeries that day) that were willing to operate.

My last surgery to remove the sigmoid colon the surgeon called me three days before and left a voice mail canceling the surgery due to the lung and liver mets, I had to wait until Monday morning to call him back and it was a long weekend.  When I got him on the phone I demanded the surgery, telling him I would take the risks of not having chemo, I would risk the other tumors growing, just get this cut out, he decided to go ahead with the surgery and I had it the next day.

The next surgeries I suspect that I need will be more difficult to get, but somehow, someway I think I will get it.

Winter Marie

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herdizziness
Posts: 3642
Joined: Apr 2010

I have had mets to my lungs since first diagnosed (Feb 2010) as well as liver, ureter and colon and a few other places, did chemo first, still got liver, colon and ureter surgery that same year.

again still with mets to lungs had liver surgery again this past May to remove mets in liver.

Then got NEW PRIMARY colon cancer in sigmoid colon, with mets once again in liver and lungs, then had colon surgery to remove tumor in September BEFORE going back on chemo (was 95% blocked), if you want surgery I have found you have to be your advocate and find the right surgeon, and sometimes demand it, I had been turned down by tumor boards in the beginning, and had I not had my surgeries, I think I can pretty much guarantee I still wouldn't be here.  

I am currently on chemo hoping to shrink liver mets again and once again get surgery to remove them, then work on lungs And thorax mets. Had the second primary tumor been located before my liver surgery in May and had been removed at the same time I don't think I would have these new tumor mets, it is believed that the new liver mets came from the new primary tumor.

I recommend meeting with a surgeon ASAP, to discuss your case and see what they want done in order to have surgery.

Winter Marie

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annalexandria
Posts: 2573
Joined: Oct 2011

One of the beauties of this place is that there is so much information, and people have different experiences depending on a variety of factors.

I kind of think they should try surgery with everyone (I mean, what if we get lucky and they manage it get it all?), but it seems difficult to convince the doctors of that.

I have a feeling that you are an excellent advocate for yourself, WM! 

Chajones
Posts: 13
Joined: Jan 2014

Winter is it not odd how your pain can bring hope to so many?  Seriously, I don't mean to sound mean,  I'm sorry you are here,  but I look at you and see you going on 4 years and fighting like a champ and I say, yes!  It can be done.  And if it can be done, then I can do it!  It was not so very long ago that thingslike diabetes were considered extremely deadly.  It still produces an incredible number of deaths but it can also be a disease that you can never cure but live with for a very long time.

 

I don't know where my patH leads.  Surgery, chemo, more chemo, chemo forever! Clinical trials?  I'm ready for the fight no matter what it requires and no matter how far I have to travel or what I have to ingest.  Bring it on if that's what's needed.

 

I just lost my friend Tom.  He was older and a mentor to me.  He had a different cancer but battled for 21 years!  The last time I saw him he gave me this great advice.  He said Chris, don't worry about 20 years, 15 or even 10.  Worry about today and set a goal to do whatever you have to survive for 5 years.  Because in 5 years all kinds of new treatments will be available.  And with the advent of the new treatments that help our immune systems fight, the future looks bright there.  

Thank you Winter for another great post

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

You have really gone through a lot. God bless you!

This is why I love this site. You have so many people here who are full of knowledge and encouraging others. Look, you and all the others on here were so encouraging that you got Chajones to find a surgeon. I am so in awe of all of you. 

I wish you all, every one of you, good health in this New Year!

Lin

 

fatbob2010's picture
fatbob2010
Posts: 467
Joined: May 2012

Whatever answer works for you is probably the right answer.  This board is a marvelous place for information and a variety of experiences with each persons unique details. 

As for me this board has shown great understanding and acceptance no matter what decision is displayed. 

I agree that you sound like a great advocate for yourself and no doubt will make the best decision for you.

Regards,

Art

Chajones
Posts: 13
Joined: Jan 2014

Oh man, I Said you guys had me convinced to seek out a surgeon.  My friend is a pancreatic Cancer survivor.  all of his work was done through UVA which someone here recognized as a top cancer hospital.  I went onto their website and found the surgeon.  He is the chief surgeon for oncology in liver.  I explained all of my scans etc.  he wrote me back!  He wrote me back within 4 hours!!!  He said he is happy to consult with me nd gave me directions to get in touch with his assistant to arrange an appointment and to gather all my records!  How great is that???

UncleBuddy
Posts: 1019
Joined: Aug 2013

That's impressive! He sounds like a carig surgeon. Good luck! Let us know how it goes!

Lin

Chelsea71
Posts: 1170
Joined: Sep 2012

Nice work.  Please keep us updated

 

Chelsea

Chajones
Posts: 13
Joined: Jan 2014

Yes that's a miracle in itself.  Having a top notch surgeon email you back within a few hours.  There was a big part of me that trout I would never get a response.

hippiechicks
Posts: 509
Joined: Sep 2012

Congrats to you!  Such great news!  Please keep us posted on your progress. Smile

Chajones
Posts: 13
Joined: Jan 2014

Yes, it really helped me sleep well last night.  

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

can literally be the difference between life and death.  So good for you for being your own advocate and seeking one out!  And I think it's a good sign that he heard your details and was willing to work further with you.  To my mind, that is very hopeful.

PS  Chemo never worked for me, but 4 recurrences, and 5 surgeries, later, I'm NED and have been for 2 years.

Chajones
Posts: 13
Joined: Jan 2014

Got am email from the surgeons assistant.  Working on getting my files up to UVA.  called ahead of today's scan and had the surgeon put on the list of people I want the scan results send to!  Moving and Shaking.....

UncleBuddy
Posts: 1019
Joined: Aug 2013

Keep everything moving. The sooner you get the surgeon consult, the better you'll feel. Keep us up to date. Good luck.

Lin

Chajones
Posts: 13
Joined: Jan 2014

Keeping on....

 

Got a call from UVA today.  They received all my records from my doctor.  I have an appointment with the surgeon at UVA on Monday at 8:00 am!

 

Keep your fingers crossed

 

Chris

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Good going!!

Winter Marie

Chajones
Posts: 13
Joined: Jan 2014

T minus 90 minutes until scan results.  Any and all last minute prayers Are appreciated.  Onc today, surgeon on Monday.  No matter what the scan results I'm going to see the surgeon who has better imagining equipment.  2014 is the year i take the fight to cancer instead of just defending myself!

 

Chris

UncleBuddy
Posts: 1019
Joined: Aug 2013

Good luck! Let us know how it goes!

Lin

Chajones
Posts: 13
Joined: Jan 2014

Hello!  Sorry for long long wait between posts.  I went up to  UVA and met the surgeon.  He was really nice.  What wasmostimpressive was that even before I met him, had reviewed EVERYTHING about me.  He even got dates right that I got wrong lol.  He set me up for  an MRI.  There was a scheduling mistake but I finally made it up there.  The following week Igalled his nurse.  She said there were multiple lesions which wasn't a surprise but also not great news.  She sounded pretty pessimistic.  But she said she had not spoken to the Dr. And would call me back.  She called back that evening (last week) and said surgery is possible!!!!!

 

She said he will use a combination of resection and burning.  The hitch (there is always a hitch) is that a couple of tiny spots popped up but did not show up as cancer.  So he wants me to do a little chemo and then rescan.  This will hopefully show if the two other spots are an issue or not. Hopefully thiis will not affect the decision to operate.  He wants me to see another medical oncologist to get a second opinion regarding the type of chemo.  I got the feeling he was not happy with my original medical onc.  So I'm headed back to UVA tomorrow to see a new medical onc.  

 

The plan is roughly this

 

2-3 months of chemo

Rescan

Operate

Rescan and rest

6 months of chemo

 

Please continue to think of me.  Things are looking up!  I want to stay on is track!

 

Chris

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

The only question I might have is why not go straight to surgery and just take out the two little spots that may or may not be cancer (since there is already known cancer in the area that needs to come out)?  Of course, this is based strictly on my own experience with chemo not working, so take it for what it's worth.  Your doc sounds experienced and not afraid to push the envelope a bit on the surgery.  So good for you for doing what needed to be done to get the ball rolling!

Keep us posted!

UncleBuddy
Posts: 1019
Joined: Aug 2013

Get that 2nd opinion, it doesn't hurt. Maybe he wants to be more aggressive with the type of chemo. Weigh your options and come back here with the information. There are many people on here who can share their experiences with you. My brother restarts his chemo on Thursday after being off of it for almost 3 months. He has nodules in the lungs and a tumor on the liver. So far they're doing chemo first, then they will discuss if he is a candidate for surgery. I'm still learning about all this stuff but the people on here have been a Godsend. Good luck.

Lin

tanstaafl's picture
tanstaafl
Posts: 1296
Joined: Oct 2010

On these boards, one can find options beyond the ordinary that when used as multimodal combinations may yield the best chances of cure or life extension.  Patients and caregivers have to go beyond the limits of individual doctors to get the best treatment series.  More and more stage IVs are getting long term results.  Extra effort and assertiveness can help. 

For very advanced liver disease, beyond normal resectability, two options stand out: ALPPS (the most aggressive liver surgery) and Hepatic Arterial Infusion to regain resectability.  HAI is most discussed at Colon Club.

A laser lung surgery technique pioneered by Dr Rolle in Germany can remove almost unlimited lung nodules.  See Cb1975 here, Cb75 on ColonChat and Colon Club.

Several of us have been applying continuous low dose chemo with targetable mild drugs (like Celebrex and cimetidine) and/or immune enhancing components, mostly supplements. A successful application will dissolve or slow down existing mets. This also helps limit the formation of new metastasic sites, although some old microscopic inventory may eventually bloom.  A number of Life Extension Foundation articles and protocols (some links) are a good introduction.  We've even used immunochemo until the day before surgery and the day after, not just a month or two away like ordinary chemo.     

Some para aortic sites and other extrahepatic mets can be removed by top surgeons. Immunochemo control of metastasis is key.

Many things are possible.  Reading is fundamental.

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

I would suggest throwing that into the mix for at least a week before and a week after surgery.  It's available OTC (brand name Tagamet), and it's definitely in the "can't hurt, might help" category.  There is some research that it limits the ability of stray cancer cells to attach to healthy tissue during/after surgery (always a risk).

I got my surgeon's ok on this (as it had to go on the list of meds I would be given while in the hospital), and he was fine with it, although he did point out that there would be no way to know for sure if it worked.  My reaction to that was "well, duh, but as I'm not doing a scientific study here, I don't really care".

As he said, I have no way of knowing for sure, but I only took the cimetidine on my 5th surgery, and that happened to be the last one, over two years ago.   Maybe it wasn't the deciding factor, but I'm glad I tried it.

Research article here:

http://www.lef.org/magazine/mag2007/may2007_report_cimetidine_01.htm

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