Info for my brother

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bekkajp
Posts: 6
Joined: Tue Feb 11, 2014 10:25 am

Info for my brother

Postby bekkajp » Tue Feb 11, 2014 10:40 am

Hi, I'm new here, sorry if there's a specific place I'm supposed to post this, don't really know my way around yet...

My brother was diagnosed with stage 4 colon cancer that spread to his liver (he's 37) ) just Friday. I am just trying to gather as much info as I can, for him, and for myself so I can help him anyway that I can...

He just had surgery yesterday to remove the tumor in his colon. The surgeon told us that he is confident they were able to remove the entire tumor in his colon...
That sounds great, but I know there is so much more he is going to have to go through yet, and I don't know exactly what any of that means. They explained to us that he had small spots showing on his liver, and I don't believe they know enough yet to decide whether they will be doing surgery or what on his liver yet---though they say it's likely. They said they will be starting him on chemo in a couple weeks once he is healed up from the surgery---
He did not have to have the bag, either, which I'm hoping is good?

I really don't even know where to start looking for info, what to expect (although, I'm sure, no one ever does at this point), etc. ANY guidance would be great...not sure what I'm looking for...sort of lost.

One thing I do want to ask is, what things besides chemotherapy have helped any of you...? As far as maybe diet and lifestyle changes go, etc. Thank you in advance for any responses. I really appreciate ANYTHING at this point.

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Bev G
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Location: Quechee, VT

Re: Info for my brother

Postby Bev G » Tue Feb 11, 2014 11:11 am

Hello, and welcome. I'm sorry your brother (and your family) have gotten this devastating news. It would take many pages to tell you everything about the assessment, management and treatment for stage IV colon cancer. First things first, though. Your brother needs a plan developed that will address fairly immediate needs (chemo) and longer term planning (ie potential for surgical removal of the liver lesions, if they are indeed representing metastatic spread). Surgical resection for metastatic spread is done with curative intent, but getting to that point may take a bit of time, a long time, and sadly, for some folks, surgery never becomes possible. As the plan for your brother is developing, information about this will become clearer.

Some of the 'brain trust" here may stop by and talk about the potential benefit of your brother going VERY quickly put on a drug called Cimetidine. This drug may improve long term outcome. I am not knowledgable enough about this to say more than that.

People may appear in your life out of the woodwork to tell you about miracle cures, from the seemingly innocent to the overtly dangerous (someone here recently was talking about putting their loved one on oral kerosene---deadly...) There are NO miracle cures. If there were, none of us would be here.Your brother's oncologist will almost certainly tell him to eat a diet as normal as possible. There won't be any magical food recommendations. Exercise is undoubtedly good, as he is able to tolerate.

Stay off Dr. Google. Your terror will increase ten-fold if you do too much reading of statistics... your brother is his own population of ONE. It is a very, very tough course, there's no question about that, and the first year is usually quite challenging, but there is light at the end of the tunnel, and it's usually not a train.

As you develop more specific questions, please come back whenever you want and we'll do the best we can to help. In the meantime, don't forget to B-R-E-A-T-H-E, and repeat often. Difficult times are coming, but information is power. While plans are being developed, I recommend you use your reading time to read through the threads on this wonderful board, maybe especially about chemo, liver resection, and other stuff that may become relevant to your brother.

Again, welcome to your new family.

Sending all best wishes,

Bev
58 yo Type1 DM 48 years
12/09 Stage IV 2/22 nodes + liver met, colon resec
3 tx FOLFIRI, liver resec 4/10
9/10 6 mos off chemo, Neg PET&CTC CEA nl
2/11 finished total 10 rounds chemo

9/13 ^17th clean PET/CT NED for now

bekkajp
Posts: 6
Joined: Tue Feb 11, 2014 10:25 am

Re: Info for my brother

Postby bekkajp » Tue Feb 11, 2014 11:37 am

Bev G wrote:Hello, and welcome. I'm sorry your brother (and your family) have gotten this devastating news. It would take many pages to tell you everything about the assessment, management and treatment for stage IV colon cancer. First things first, though. Your brother needs a plan developed that will address fairly immediate needs (chemo) and longer term planning (ie potential for surgical removal of the liver lesions, if they are indeed representing metastatic spread). Surgical resection for metastatic spread is done with curative intent, but getting to that point may take a bit of time, a long time, and sadly, for some folks, surgery never becomes possible. As the plan for your brother is developing, information about this will become clearer.

Some of the 'brain trust" here may stop by and talk about the potential benefit of your brother going VERY quickly put on a drug called Cimetidine. This drug may improve long term outcome. I am not knowledgable enough about this to say more than that.

People may appear in your life out of the woodwork to tell you about miracle cures, from the seemingly innocent to the overtly dangerous (someone here recently was talking about putting their loved one on oral kerosene---deadly...) There are NO miracle cures. If there were, none of us would be here.Your brother's oncologist will almost certainly tell him to eat a diet as normal as possible. There won't be any magical food recommendations. Exercise is undoubtedly good, as he is able to tolerate.

Stay off Dr. Google. Your terror will increase ten-fold if you do too much reading of statistics... your brother is his own population of ONE. It is a very, very tough course, there's no question about that, and the first year is usually quite challenging, but there is light at the end of the tunnel, and it's usually not a train.

As you develop more specific questions, please come back whenever you want and we'll do the best we can to help. In the meantime, don't forget to B-R-E-A-T-H-E, and repeat often. Difficult times are coming, but information is power. While plans are being developed, I recommend you use your reading time to read through the threads on this wonderful board, maybe especially about chemo, liver resection, and other stuff that may become relevant to your brother.

Again, welcome to your new family.

Sending all best wishes,

Bev


Thank you, Bev.

One question I have about the liver-- what would hold them up on performing surgery on it right away? We asked this question yesterday, but didn't get much of a response from the surgeon that we could really understand at this point with our complete lack of knowledge on these things... No cancer has ever been in our family, so this is extremely new and confusing to all of us. We were all sort of anxious about leaving the liver alone right now...being that we love him, we feel in a hurry to get it all out of there...but obviously, there must be reasons that we can't.

I will be looking into Cimetidine. If anyone who IS knowledgeable about it wants to spout off any info you may have about it... I am open to absolutely everything.

thank you so much again...and most especially for your kindness and positivity in response to my post.

NWgirl
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Joined: Sat Feb 02, 2008 3:24 am
Facebook Username: Belle Piazza
Location: Battle Ground, Washington

Re: Info for my brother

Postby NWgirl » Tue Feb 11, 2014 12:17 pm

Bev pretty much covered all I could offer and then some. Being stage 4 all I might add is that at some point if your brother is at all uncomfortable with his proposed treatment plan, it is very common and very okay to get a 2nd opinion from a major cancer center. If he's already at a major cancer center, it's okay to get a 2nd opinion from another cancer center. Not that this is always a necessity, just know it's an option. Otherwise - Bev pretty much covered it. We're so sorry you have had to find your way here - but welcome to the group.
Belle - "Don't Retreat - Reload"DX 10/07 Stage III Rectal
Surgery 11/07; 27 of 38 nodes
Perm Colostomy 8/11
12/10 recurrence lungs & LN's
VATS Jan 2011
Radiation Oct 2013
Chemo for Life
2012 Colondar Model

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GrouseMan
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Joined: Mon Aug 12, 2013 12:30 pm
Location: SE Michigan USA

Re: Info for my brother

Postby GrouseMan » Tue Feb 11, 2014 2:32 pm

Your wish is my command: Re Tagamet(cimetidine)

The following link will take you to a previous post I made recently when someone else asked.

viewtopic.php?f=1&t=45503

and

viewtopic.php?f=1&t=45513&p=330374&hilit=Tagamet#p330292

Regards,

GrouseMan
DW 53 dx Jun 2013
CT mets Liver Spleen lung. IVb CEA~110
Jul 2013 Sig Resct
8/13 FolFox,Avastin 12Tx mild sfx, Ongoing 5-FU Avastin every 3 wks.
CEA: good marker
7/7/14 CT Can't see the spleen Mets.
8/16/15 CEA Up, CT new abdominal mets. Iri, 5-FU, Avastin every 2 wks.
1/16 Iri, Erbitux and likely Avastin (Trial) CEA going >.
1/17 CEA up again dropped from Trial, Mets growth 4-6 mm in abdomen
5/2/17 Failed second trial, Hospitalized 15 days 5/11. Home Hospice 5/26, at peace 6/4/2017

orcasres
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Joined: Mon Jul 01, 2013 10:23 pm
Location: Orcas Island, WA

Re: Info for my brother

Postby orcasres » Tue Feb 11, 2014 6:42 pm

In response to your question about liver resection, there are a lot of factors that go into the decision of when or if liver resection is done. You mentioned multiple spots. It has to be determined if the spots are metastases and whether it is necessary to treat them with chemo to shrink them before they are removed. Also their location in the liver may make it necessary to wait to shrink them first or might render them inoperable. All of these kinds of questions will become clearer to you as you and your family move along your brother's treatment path.

One thing you should do is collect all of the information your brother receives along the way; usually a loose leaf notebook is a good way to collect all of this info even in our digital age. Pathology results, test results, scan results, etc. all need to be collected and it will be helpful to him to have another person go along to all medical appointments. Go in with a list of questions and write down the answers for future reference.

Lois
63 yo F
Colon resection Sept. 2010
pT3N0M0 Stage 2A
Medullary Tumor 6.5cm long
Lymphovascular invasion
Lynch negative
12 FOLFOX 11/2010 to 5/2011 8 w/Oxi
NED so far

Ehut
Posts: 220
Joined: Wed Sep 26, 2012 4:24 pm
Location: Algonquin, IL

Re: Info for my brother

Postby Ehut » Tue Feb 11, 2014 9:53 pm

I'm so sorry that you and your brother has to go through this. As far as chemo before resection, they do this to hopefully shrink the tumors before removal to retain more of the original liver. My liver was resectable at the time of diagnosis, but the doctors suggested 4 rounds of FOLFOX chemo (Folinic acid, aka Leucovorin + 5FU, aka Fluorouracil + Oxaliplatin) + Avastin to see how the tumors would respond. They shrunk roughly 50% and I had the removal surgery shortly thereafter along with 8 more cycles of chemo and no recurrence yet 2 years later. Hopefully he is one of the "lucky" stage IV patients with a resectable liver.
Dx 12/11 rectal stage IV w/ 6 mets to liver, age 35
4 cycles FOLFOX 12/11 to 2/12
short course radiation 2/12
rectal/liver resection 3/12, temp ileostomy
8 cycles FOLFOX/FOLFIRI 4/12 to 8/12
ileostomy reversal 10/12
port out 10/13
NED for 7+ years and counting!

bekkajp
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Joined: Tue Feb 11, 2014 10:25 am

Re: Info for my brother

Postby bekkajp » Tue Feb 11, 2014 10:13 pm

Wow thanks everyone. That's a lot of information to consider. Day after surgery here and he seems to be holding up well. I'm finding it hard to articulate myself so I will post more when I can find the words. Thank you everyone again

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mstults
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Re: Info for my brother

Postby mstults » Wed Feb 12, 2014 1:31 am

I can't really add anything other to say that you are probably finding that stage IV is not always the same with all patients. We are not Drs and most are hesitant to recommend specific courses of treatment, especially if it lies outside the mainstream acceptable course. I was never a candidate for resection, so far, and not likely to ever be. My liver involvement was described as numerous mets. Too many to count. The largest was 12 cm. 6 rounds of folfox reduced it to 6 cm but now it's sitting there neither shrinking or growing but I'm in my 20th month of chemo. The small mets are still there. Your brothers prognosis sounds much better. If it isn't, please realize it can be treated. My oncologist told me up front I could not probably be cured but I could be treated effectively. Your brother is much younger and I realize anything but cure is a huge disappointment, but support him and be there for him. Most of all get an Onc he trusts and follow his directions. That doesn't mean don't educate yourself about the disease. Just allow the Dr to do his job. If you need to pm please feel free to do so.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

bekkajp
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Joined: Tue Feb 11, 2014 10:25 am

Re: Info for my brother

Postby bekkajp » Wed Feb 12, 2014 12:05 pm

Yes, I'm hoping for the best as far as his liver goes... as far as I know, the doctors don't know 100% what kind of shape his liver is in, but have said that as far as they know so far, it appears that he has two small areas as of right now... I think that the doctors are trying their best to "dumb it down" for all of us, but when I get the chance I want to pull the oncologist aside and get a more thorough explanation, because the dumbed down versions don't educate me the way I'd like to be educated on my brother's situation.

At least, with the information all of you have provided me with so far, I somewhat have an idea of what we might have to prepare for, and what we can hope for most importantly.

I definitely am going to start jotting down questions in a notebook as they come to me..

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mstults
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Joined: Fri Nov 30, 2012 11:23 am

Re: Info for my brother

Postby mstults » Wed Feb 12, 2014 10:18 pm

Without authorization from your brother they can't tell you anything. I'm sure you know that though. If what ou believe is true about his liver, they are probably trying to put together a plan of action. He has an excellent prognosis whatever that plan is. Providing the liver mets are not in critical areas.
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

bekkajp
Posts: 6
Joined: Tue Feb 11, 2014 10:25 am

Re: Info for my brother

Postby bekkajp » Wed Apr 09, 2014 10:32 am

an update and a couple questions!
so far, my brother and the rest of us have been able to navigate this fairly well all things considered...

After he was released from the hospital, he was home for a week before he was admitted again due to fluid on his lungs-- Apparently...and THANKFULLY it was NOT cancerous fluid. He then had his PET scan shortly after, and they had found the cancer in his liver (which they already knew), and his adrenal gland (I think that's the one?) --The cancer in the colon itself, is as of now, gone.

So, the plan FOR NOW was established, 4 rounds of chemo and then.... ???
He had a port put in...and I don't actually know what sort of chemotherapy he is receiving when he goes in for treatment (I didn't go with him, and he doesn't pay attention) but he does have to wear a pump for 46 hours after each treatment of Fluorouracil/Adrucil...

Anybody care to fill me in what exactly that is/does? And if any of you have had experience with it, or similar treatment... how you felt about it?

I saw him last night (the day after his first treatment) and he was doing well. He said that he has had no nausea or other uncomfortable side effects besides being really sensitive to cold. I'm hoping that this is a good sign that he won't have to feel too crappy throughout chemo...but I assume it can change? Either way, fingers crossed that things can continue to go so smoothly.

On another note... I have always looked up to him, my whole life. This situation has only caused me to admire him even MORE. I can't believe how strong he is and how amazing his attitude has been about everything. He's always cracking jokes. When the nurses gave him his pump, apparently he said that he thought it looked like a Gameboy and asked the nurses if he could get some Mario games to go with it. I don't reckon I would have even HALF of the patience and positive attitude that he has had... it is truly inspiring to me.

dianne052506
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Location: North Carolina

Re: Info for my brother

Postby dianne052506 » Wed Apr 09, 2014 1:07 pm

bekkajp,

You gave a big clue with cold sensitivity. Your brother, just like Ehut wrote about in February, is getting FOLFOX. If your brother is far enough out from surgery that he is completely healed, he may also be getting Avastin, not a chemo drug, but a monoclonal antibody designed to cut off blood supply to the tumors. Before the chemo infusion, he is probably also getting an infusion of several antinausea meds; one of those may be a steroid (noticeable by flushed cheeks on day 2, possible difficulty in sleeping while the steroid is in his system, followed by a drop in energy when the steroid is gone). Some of do poorly with steroids, so that we joke here about having "'roid rage," a phenomenon that isn't necessarily rage, but certainly increased moodiness. (Just FYI.)
It is good that he tolerated the first round well, but very likely, each round will get a little harder, mainly for fatigue. My 3 big rules for chemo are:
Rest whenever you feel like it, even if you never, ever, needed a nap before
Exercise, even walking, if good for you, if at all possible, and if you don't feel like it, try at least a little before giving up
DRINK FLUIDS, even if you don't feel like it. Getting IV fluids (even bags of chemo) bags you want to pee. It's easy to pee more than you take in when you start feeling crummy. Getting dehydrated makes any chemo side effects worse.
Your brother will have his blood counts checked before every round of chemo. Expect WBC (white blood cells) especially, but also RBC to take a hit. The onc may ask your brother to come in for shots to build up his WBC, because lowered white count makes a patient more prone to infections. It is also not uncommon sometime in the FOLFOX regimen to have to delay a round or two because of lowered counts. Don't panic if that happens.
Just as others wrote earlier, the big goal is liver resection. I suspect the onc wants to start with just 4 rounds of FOLFOX, then do a scan to judge for effectiveness. If there has not been shrinkage, the onc may want to continue on FOLFOX for a while longer, or switch to another chemo. Best case would be enough shrinkage so that your brother is ready for a resection at that point. He would then continue with additional FOLFOX after healing from the liver surgery.
You seemed very concerned in an earlier post that the liver resection wasn't scheduled right away. Resectability of the liver depends on number, size, and location of the tumors. When I met my liver surgeon before I started chemo, he said resection was technically possible right away, but he always wanted to see the effectiveness of chemo first. After liver resection, "mop up" chemo is required to try to get any cancer cells still in the blood; or in the organs, but too small an agglomeration to show up on a scan. Having some chemo first tells the docs which chemo has the best chance of being effective as "mop up."
Hope this helps.
Best wishes to you and your brother,
Dianne
May 06 Stage IV CC: liver,ovarian mets
Oct 07 inoperable lung mets
Feb 08 - Apr'12 chemo
allergic to oxaliplatin, irinotecan
Aug '12-Feb'14 Genentech PD-L1/Avastin trial
Mar '14 -radiation to largest lung nodule
still recovering; looking at trials again


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