Brain Mets--Tell Me What You Know

[weisssoccermom]

I don't think it's correct nor appropriate to say that only rectal cancer mets to the brain and very rarely colon cancer. Cancer doesn't necessarily metastize solely on the vascular system - bone mets can just as easily be an easy route to the brain. I say that because I know of more than a few people on this board (some that you know about - others not) who had brain mets. First of all, I agree with Ashlee that one reason it may not be as 'uncommon' as we're lead to believe is that survivors are living longer and, in doing so, brain mets, bone mets, etc are more likely to occur. Secondly, and I only realized this after Pat (Gaelen) died, but when patients stop treatment how often do they keep getting scanned? Think about it - if you, as a patient, are no longer in active treatment, why would you get scanned? I won't go into specifics, but to let you know that yes, Pat, also had brain mets. She only found out towards the end - something I'm not sure she really wanted to know. How it all came about is irrelevant. Another thing to consider .....how many crc patients routinely have a brain CT/MRI?? How long did Pat have these mets? I have no way of knowing but am aware that in the last few weeks when I talked with her, I noticed that she was 'off'. Was her inability to walk/move due to the brain mets? Don't know and probably never will. Brady had brain mets - if memory serves me correctly, he had treatment, it would go away but another one would pop up. I don't necessarily believe that mets need to cause excruciating headaches or fainting although they certainly can. With the two people I know of that had brain mets, their 'behavior' changed - very subtle in the beginning....working it's way up to falling asleep in the middle of a sentence or 'blanking' out in the middle of a conversation - basically not themselves....sometimes things they said just didn't make sense - it was almost like a super intense case of chemo brain with a twist.
My friend's mom has lung cancer with a confirmed brain met. She just had cyberknife which appears to have worked - although the treatment was difficult. Her onc was very upbeat ....if another one pops up, which seems like a good possibility....they'll do cyberknife again. Don't kid yourself though, radiation to the brain area, even something less invasive like cyberknife (as opposed to whole brain radiation) isn't a 'no big deal' treatment. There are residual effects. I don't remember which treatment Brady had....but he had difficulties afterwards. You might want to go back and find some of his posts or look at his wife's.
Hubby had a boss dxd with a glioblastoma (like Teddy Kennedy) shortly after I was dxd. He had full brain radiation (quite a bit different) as well as chemo wafers implanted and while he did ok with the chemo wafers, the brain radiation altered his personality and he was truthfully never the same again. Yes, he was alive but at a cost. For a few weeks afterwards he appeared normal and was able to play golf but he went downhill fast and the treatments pretty much rendered him unable to walk, talk well or even be able to 'think' appropriately. Keep in mind though that this was full brain radiation.
I know of three other women who had breast cancer with brain mets and it varied with each one how long they lived, how well their quality of life was, etc. I don't think it's a one size fits all answer.
I wish I could tell you that brain mets all fit into this nice scenario that you'll know what will happen, how each patient will react, how long one has to live, what his quality of life will be like, etc. As you know all too well....cancer doesn't have an instruction booklet and it doesn't play by any rules.
Jaynee

[hannahw]

Several years ago there was a member named BradyR who had brain mets. I think there are probably quite a few good threads from him on the topic. There are a number of treatment options but I think many of them can be quite taxing. It probably depends on the location of the mets and the extent of them. My Dad's onc always reminds my Dad that he's no signing a lifetime contract when he agrees to a treatment. He can always try something out and stop if he doesn't like it. So if you think there's a treatment option you want to try, you can always stop if the side effects are too much.

If you haven't already talked to the oncologist about end of life, what your husband wants, what he values, what he's willing to undergo for the million-to-one-shot, I would start that conversation. Your oncologist can provide more effective guidance if he is aware of your needs and expectations. Some people want to do absolutely everything and die with chemo in their veins. Others don't. No right or wrong, but if you don't say what you want you end up with what the doctor wants. That's not an indictment of the doctor by any means, but he may not share your feelings with regard to when enough is enough. The more you communicate with the doctor, the better he can serve your needs.

In some cases, brain mets can cause seizures. You might want to find out what to expect in the event of a seizure. My Dad has had seizures, although not from mets. Here are a few things I know. It sounds scary and the first time you see a seizure, it is scary, but seizures generally resolve on their own. And there are medications that can help control them (although I'm not sure how much they help when mets are involved). If a person seizes, you want to get them to the ground as quickly and safely as possible, moving anything that is near to them (like furniture) away to avoid injury. You want to roll the person on their side to keep the airway open. Don't panic if you see blood coming from the mouth because it's common for a person having a seizure to bite hard on their tongue. Start timing the seizure immediately. If it lasts more than 5 minutes without conclusion, call 9-1-1. During the period following a seizure, it's normal for a person to be in an altered state of consciousness, kind of groggy and messed up. But as long as they are breathing normally, it's ok. For a person with a seizure disorder it is recommended that they not do things like driving and swimming, not sure if the same is true for brain mets, but from a safety standpoint, if there's any chance of seizure, it's probably good to err on the side of safe. It's also recommended that a person not shower without someone else being aware that they are. A seizure while showering can be a big problem because the person will likely fall and hit their head.

[so-scared]

I am sorry to read this! It seems to be everyone's fear.

Proton therapy may be something that you should just take a look at. The collateral damage is much less with this than other radiation treatments. I researched this when my 9 yo old nephew had what they thought was a butterfly glioma, which is not curable. It turned out to be an AVM that had bled which is still not a good thing but way better than the butterfly glioma!

My heart goes out to you! This just plain sucks!!! I will be praying, flinging fowl, etc for you and your family!!

[fritts44]

I'd be interested in others' comment about whether the standard protocol used for CRC in liver and lungs is effective on bone and brain mets? I know radiation is an option in many cases, but can systemic chemo also work effectively or do they do radiation because chemo isn't effective?

Good luck! My thoughts are with you.
Julia

From what I've learned about brain mets since my friend's BC progression, chemo usually cannot break the "blood-brain barrier". So, most chemo drugs cannot even reach the brain. I did see on some of the BC message boards that some of those women with brain mets are being treated with Xeloda. (that's the only drug I've noticed that's consistent between BC chemo & CRC chemo). I'm not sure what it is about Xeloda that makes it cross the BBB when other drugs do not, but I do see some women going that route. Still, the primary treatment for BC metastasis to the brain is whole brain radiation.

[prtza]

I'm sorry to hear this latest news Laurettas.

You might have found this site already. It seems to have a lot of useful info, and some encouraging stories:

http://www.brainmetsbc.org/index.php?q=node/67

[DeeNY]

I'm sorry to hear this news....I don't post very often but felt I wanted to jump in here since I have some experience with brain mets. My husband's cancer spread to his brain last June 2011. After brain surgery, chemo, 2 stereotactic treatments and 14 rounds of whole brain radiation, he lost his battle this past June 2012. I must say he did very well after the surgery and the sterotactic treatments. He even traveled and drove. It wasn't until this past April when he started to have difficulty with writing and his cognitive function started to deteriorate. Frankly, the whole brain radiation didn't do him any favors (just my opinion). Anyway, i wish you well and will be praying for you during this difficult time....

All the best
Dee

[jacekica]

So sorry for this met.
My friend had a met in brain (metastaic melanoma, very aggresive) - and she lived 2 years, very good life except last 3 months. But she did have surgeries (3) and very quick recovery after them. It is only experience with brain mets i have.

[las]

NO, I didn't want to hear this Laurettas, I had such high hopes for u being the leading edge gal on researching the best possible treatment out there for jake. You have spent countless hours on this and to find out this is heart breaking. I don't have any experience in this area. I am so, so sorry it has come to this. Praying that god leads you in the right direction on this one.

Love to u both dear,

Lisa

[hopkinsregular]

From a different perspective, my journey started with brain mets, emergency surgery to remove two brain tumors that caused uncontrollable leg shaking. After surgery I received good news, not brain cancer, bad news, mets from colon cancer. Right side paralysis from surgery. Advice-nursing home or hospice. Demanded rehap. Walking within ten days. PET scan sowed mets to liver, lung and large tumor in colon. CEA 5,000+ Met with oncologist. Prognosis-5 months max. Demanded chemo over objection of why would you want to live your last few months with that? Colon resection. 12 rounds FOLFOX, FOLFIRI for life. CEA in steady decline,to mid 40s. I am shooting for 3 but oncologist says it won't happen. Clean scans from neck down for two years. After 3 month break, CEA up to 300 and met on spine. Treated with cyberknife and back on FOFIRI.

Recent MRI of brain shows new small (2mm) spot on brain. Slow growth over last 3 months so planning for 6th brain radiation treatment. 2 prior gamma knife and 3 cyberknife. Not unexpected, radiation every six months or so to deal with new spots or to retreat prior treated areas.

Almost four years after initial surprise. Statistics and the four teams of doctors working on me agree that I should not be alive, all want to take credit for the fact that I am and often argue over what should be done. I work full time except when I have doctor appointments and treatments that I can not work through. As my doctors all say, I am not a normal patient, but who is?

Al that being said, this has not been an easy journey and I have no doubt that the end is one incident away. If I did not have very good insurance and a family, I would have accepted the initial advice to put my affairs in order and prepare to die.

[Laurettas]

Again, thank you all so much for such wonderful advice. I am finding it extremely helpful in knowing what to ask the docs and what to research.

Jake is already having significant symptoms but no headaches or fainting. He had been having some minor vision issues for months that we attributed to chemo. Then when he started back on 5FU a month ago, he seemed to be having major chemo brain, to the extent that I asked for a dosage reduction on the 4th treatment. He was walking different and could not reason well. The dosage reduction seemed to help but then he put his back out two days later and took a few doses of hydrocodone for the pain. That made him completely unable to function. He has recovered from that a lot but still has difficulty with doing some things. Seems to be having issues with knowing what his left side is doing. He is very sad to be experiencing all of this. The onset of the severe symptoms has been overnight and has been a major adjustment for him.

I need to get on the phone this morning and find out what the onc here is planning and also inform Seattle to get their thoughts.

The difficult thing is trying to discern the value of any treatment. If doing something is only going to postpone having to go through the same thing in a couple of months, I don't see the point. And, the brain met is certainly not his only issue. He has lots of cancer in his lymph system that would need ongoing treatment as well. At this point we don't even know if there is anything to control those. So much the sort through and try to discern.

[frances]

Laurettas,

Hi - I sent you a PM.

Frances

[Laurettas]

Interesting info on 5FU and the brain:

http://www.urmc.rochester.edu/news/stor ... fm?id=1963

[chessamay]

[quote="weisssoccermom"]I don't think it's correct nor appropriate to say that only rectal cancer mets to the brain and very rarely colon cancer. Cancer doesn't necessarily metastize solely on the vascular system - bone mets can just as easily be an easy route to the brain. I say that because I know of more than a few people on this board (some that you know about - others not) who had brain mets.

Weissoccermom,

I said it is rare in colon cancer to have mets to brain (I should have said "it is rare for colon cance to mets to the brain first"-it will most likely go to the liver and lung first). Of course I someone is in a late stage cancer, on hospice- the cancer will become out of control and go everywhere!

Cancer does metastasize through the vascular system. That is how cancer spreads and that is how it is fed!!! It needs oxygen and all the nutrients of blood like any organ in the body to survive. And every cancer is not alike-it follows the path of least resistance. (ie.rectal goes to brain because there is vasculature from the rectum to the brain!!)If you review your pathology report they indicate whether or not you had lymphovascular invasion..that is an important factor. That will be the first route colon cancer will take.

Colon cancer will most likely take the path through the mesenteric lymphovascular channels to mesenteric lymph nodes to the liver or lungs. Organs have lymphovascular routes to other organs/structures via the vascular system!

I work a lot with a gyneoncologist surgeon. I see a lot of ovarian cancers and endometrial cancers.......ovarian cancers like to spread to the pelvic and aortic lymph nodes---to the omentum-----then they will spread to the peritoneal cavity (carcinomatosis -seedlings throughout the abdominal wall and other structures or more advanced what we call "caking" of the tumor). Appendiceal cancer, and colon cancer can become carcinomatosis, as well. That is when we do HIPEC.

I would not steer anyone in a wrong direction without knowing the facts. I have been a registered nurse in the operating room in a trauma center for 13 years.
I see cancer every day I go to work. I work with surgeons who take out all kinds of cancers, I SEE IT AND TOUCH IT, I am right there. I ask questions from the very doctors I work with.....my answers are from surgeons...........are you a medical professional?
Catherine
PS a lot of people get colon cancer and rectal cancer confused. they are treated differently as well. you will never find INITIAL treatment for colon cancer pt getting radiation, because it can damage other structures and the colon is constantly undergoing perastalsis (movements in the bowel that aide in digestion).

[chessamay]

Lauretta,
I am very sorry for what you are going through. You might want to look into radiation-gamma knife.
It is fairly new and great success in many pts.
I really hope you are taking care of yourself and have help from others.
I learned that one...........my husband is battling another illness that is life threatening that holds a huge stigma, so I am not inclined to talk about it, but I do understand crisis very very much........
I will hold you in my prayers and thoughts.
Catherine

[weisssoccermom]

Catherine,
I'm well aware of the differences between colon and rectal cancer as well as the differences/similarities in their treatments.
I do think that saying that colon cancer doesn't generally metastize first to the brain is a more appropriate statement because of the handful of people on this board that I know have/had definitive brain mets, half are colon cancer and half are rectal cancer patients.
I would also say that NONE of the rectal cancer patients (that I know of) with brain mets had those mets before mets to either the liver, lungs, bones or some combination of those places. I think it's fair to say that IF a colorectal cancer patient has brain mets, they've almost exclusively had mets first to some other location

I also think it's a fair statement to say that once the cancer is pretty much all over your body (i.e. in multiple sites such as lung, liver, lymph nodes, bones, etc), it's not a stretch to believe that brain mets couldn't easily be next. Over the years, I've known eight members of this board who have had confirmed brain mets and they've all had the cancer spread throughout their body first so it really was no surprise that the cancer eventually reached the brain.