Brain metastases - prognosis

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5/1/2011 9:09pm
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Replies: 13

As I've documented recently, my wife, Stage 4 melanoma, Ipi non-responder, skin and lung mets, and now brain tumors (one of which burst causing her to undergo brain surgery), is at home now, recovering. There is sort of a game plan with our trusted oncologist, when her brain calms down a bit more we will likely meet with a radiologist to discuss radiation (gamma or cyberknife) to address remnants of the tumor removed during surgery and the other known one in a different location. (we are obviously knocked out of the NIH trials we were scheduled to attempt). I've spent quite a bit of time this weekend trying to understand realistic outcomes for melanoma patients with brain mets and figuring out how to help her understand quality of life issues when looking at treatment options and their side effects relative to life extension. The statistics and prognosis generally for someone in her state are not good. I know all the arguments about how each person's experience will vary and I'm not proposing we give up. But I have two college age kids who want to understand what the course of events likely will be in order to prepare themselves. and I have a wife who is somewhat cognitively impaired from the stroke, and frankly is in quite an anxiety free and positive mood. So I am more than unclear about how to talk to my young men about their mom, let alone whether and how to help my wife understand her situation without upsetting or confusing her (is blissful ignorance better than knowledge?). If she knew the probable outcome she might start taking some actions now (letters to her boys when they marry, etc). Or do I just leave it to the oncologist and radiologist to break the eventual news?

Anyone been in this situation with advice?

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

i am so sorry to hear this sad news...i do not have experience answering your questions, but i did watch a video about new methods and trials for advanced melanoma and maybe it would be helpful to you?

http://www.youtube.com/watch?v=symnf-2pr08

if you have trouble with the link i found this on the AIM website under patient and caregiver symposiumss

don't back up, don't back down

also, i wanted to let you know that Dana Farberhttp://www.dana-farber.org/Apps/clinical_trials/trial.aspx?65  has some interesting drug trials...

don't back up, don't back down

this is the problem with having brain mets and why we aren't going back to the National Cancer Institute - read the exclusion criteria for the study you cited:

"Prior treated brain or meningeal metastases must be without MRI evidence of progression for at least 8 weeks"

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

As you say, the prognosis for your wife is not good. Unfortunately, any mets in the brain or
liver are very likely to cause further serious problems. They may grow and or burst unexpectedly.
However, this doesn't always happen and some people are able to contradict the statistics and
survive for a long time.

I lost my wife to this horrible disease on 21 October 2009, and so I have some idea of what you
could be going through. She was stage IV and fairly ok for nearly a year, but then she
experienced sudden liver failure from new mets that the CT scan couldn't detect.

I always felt that it was necessary to keep those closest to her informed of what was happening.
As her oncologists couldn't tell us with absolute certainty how long she had left, we tried to be
prepared for the worst while expecting the best. In the last week of her life, she knew
instinctively that her condition had become extremely serious. I tried to convey this to everyone
who cared about her.

Hope this helps.

Frank from Australia

I urge everyone to thoroughly educate themselves about melanoma. No part of this post should be considered to constitute any form of medical advice. Please consult a competent oncologist. (I think that prayer can help in ways that we don't always expect).

ADSCLT - (5/2/2011 - 11:49am)

I'm so sorry to hear someone going through this like my family.  My father was diagnosed with brain mets March 21st.  He had whole brain radiation for 2 weeks.  The radiation was very difficult for him.  3 weeks ago the doctors performed another scan and found he had numerous brain mets.  Orignally he only had 6.  He said we could try IPI but it took longer to work then my dad probably had time.

Per my Dad's doctor his case is extremely aggressive.  My dad chose to not go through any more treatments because he wanted to feel as good as he could for as long as he could.  We were told he had 1 to 2 months.  We are going on week 4 now.  My dad has 4 kids (all in their 30's) and 9 grandchildren.  The first 2 weeks, we chose to notify only the immediate family.  We all took time off and began his "bucket list".  This actually help us all because we focused on the fun we were having with him and not the disease.  It has also given his grandchildren a little more comfort.

 We chose to be completely honest with the entire family so if there was anything left unsaid or done, we could take advantage of the time.  The other person who posted said they prepared for the worst and hoped for the best.  That is what we done as well.  I hope my dad has much more time and we run out of bucket items. :)  But if not, we can be at peace.

I pray you and your wife will make the best decision for your family.  I I   fdfa

 

 

Give it all to God.

Nick,

My heart goes out to you, your wife, and your sons. You may want to get a cup of coffee as this will be long.

How to "prepare." Nick, I'll level with you, in many ways you can't "prepare." You can try to wrap your mind around what's happening, you can be frank with your boys and talk about what's happening often. But in all this time, I've yet to hear someone say when death comes, "Well, I was prepared for this moment."  That's just not what they say.  They say, "I thought I was prepared. But I'm not"

There's really no way to adequately prepare for the finallity of death in this life.  But you can prepare now to help her fight the fight she chooses and you can prepare now to help her leave in the best possible way and you can prepare your boys for the fact that they don't know how they'll react when it happens.  And you can prepare yourself to help her so that when it does happen, you aren't left feeling guilty about "if only."

Because I don't know the nature of her cognitive impairment, I'll be general as possible. You mention her writing letters to the boys. Is she capable or can you gently steer her.  "Honey, let's write each boy a letter. I'll write and you dictate. What would you like to tell son A? Son B?"   As for who tells her what: many times as the dying process nears, the person knows instinctively what's happening.  I'd wait for her to bring it up.  Frankly, I wouldn't leave it to the doctor to tell her.  Ask the doctor to tell you, but then you have that hard talk with her. You won't be cold and intellectual based about it. She trusts you. When she does bring it up, and it may be vague, she may test the waters to see your reaction to the ida of her dying, but honest, cry if you want to it's OK, let her see from the onset that you'll let her talk about it.  That's probably the best thing you'll be able to do.  Tough as hell, yeah, but necessary.

Those talks though will, ultimately, be good for both of you and your sons will see that they can talk with her too.  If they each choose.  People all handle death differently.  Some can be there, some can be in the house but not with her, some will not be there at all. They can't handle it.  Let your boys each do what they can and don't push either into something they can't do.  You'll learn a lot about each son during this time.  Don't judge, just love them through this.

Because she probably won't be dying quickly in a car accident, you'll need to prepare as best you can for the death process, once it begins, and you might not recognize it at first.  You'll see things and hear things that you'll just need to let her do and agree with.  Well meaning people will tell you it's her medication or she's hallucinating or all sorts of things.  This is where a trained Hospice chaplain will come in handy.  Leaving this world is something that looks different for everybody but there are things that are similar for most everyone.  Prepare yourself to handle a possible change in personality.  Deal with it.  Prepare yourself for her wanting to be naked and without a sheet. Deal with it but see if she'll compromise and stay under a sheet when you have company.  Prepare yourself for her making various preparations to take a trip and talk about going somewhere.  Discuss where she's goign and what you can do.  Prepare for her to talk about seeing and talking to someone who has died.  Deal with it.  She's not hallucinating. This will be her reality and this is very, very common. Don't argue with her.

You've never gone through the death process so you'll have no frame of reference of actual experience.

And Nick, whether you all are praying people or not, now's a really good time to pray.  Find people you can lean on.

Oh and your boys, you say they're college age.  Your wife, their Mom, may live another year. We really don't know how long someone will live...even when dying actually starts, sometimes it takes several months instead of the predicted weeks.  Prepare for how they each may respond when it does eventually happen.  I've seen good college students drop out for a year or so because they just couldn't deal with their grief and school at the same time.  I've seen them go wild.  I've seen them become introverted.  I've seen them buck up and mature over night so they can make Mom (or Dad) proud. Just love through this and after this...love each as he is.

Love your wife as she is.

Lord, in Your mercy, hold this family at this time and show each how to navigate these painful waters. Amen.

Carol, thanks for your very thoughtful and helpful response. One of my sons has taken leave from college, and fortunately is seeing a therapist. The other graduates in mid-May and is moving home to work for a year before heading off to graduate school. He is also seeing a therapist (heck so am I  - we all recognize the need for support). At least they will be around their mom while she goes through this. And you are right - in our case they have matured greatly and have perspectives on life and meaning far beyond what I had at their age. Sparing them the info probably isn't helpful or fir to them.

My wife and I did have a bit of a conversation last night. It was very difficult. Because of her stroke she is in a very happy place right now - anxiety free, focused on joy and friends and living a full rich life. She came right out and said, "lie to me" if she asks my point of view about cancer prognosis, progression or impacts. She just wants to stay positive. I respect her request - but suffice to say there is a bit of cognitive dissonance within me that I will be discussing with my therapist today. She may be forced into dealing with it when we meet with radiologists, and I guess we'll just do best we can.

Again, thank you. I really appreciate the advice.

Nick

Her motto: "Don't wait for the storm to pass, love dancing in the rain".

Nick,

My heart is breaking for you and your family.  There is a good chance she is on steroids for swelling. That in itself will put her in a happy place.

When my mom's breast cancer went to the brain my brother and I had many disagreements on how things should be handled. I will never forget the night that she had slipped into a light coma (or so everyone thought) and again we had a disagreement. She sat up in bed and stared at both of us and started yelling at us.  While the words coming out of her mouth made no sense she got her point across.  So typical of our entire life. 

Mom could not discuss what was going on with me but she also wanted me by her side.  She did talk to the hospice social worker. The social worker was so kind and had called me and left the phone off the hook so I could hear mom's wishes. During that conversation I heard my mom say that she knew she was dying, just didn't want to talk to me about it, however she also knew that I knew.  We never did have that serious conversation even though I was her primary caretaker the entire time. 

Be there for your wife. Hopefully they will find the right treatment for her. Take care of yourself and your sons, that's probably the primary thing your wife would express to you if she could.

Linda

Stage IV stable - hopeful

scans in 1 week

I'm here for you Nick if you want to talk about this death and dying aspect of what you're dealing with.  For some odd reason, God has given me a "knack", if you will, for some sort of understanding & respect for death. 

I'm glad to see you all being so proactive and not trying to dodge the bullet. That generally proves disasterous!  It's what our human nature wants to do, but it's not good. Death is part of life, something we all have to deal with, and something we all will have to face ourselves. It's not helpful being in a death-denying culture when life just isn't that way at all.

That said, please stay real with your sons. As painful as it is, stay real. Don't fudge, don't dodge. Keep it honest, just like you're doing.  Sparing them info and pain will only compound the pain when it happens. Plus, if you don't keep them in the loop, they'll learn lessons you don't want them to learn, like you think they're babies and they can't trust you to be honest with them.  So, yeah, keep it honest!  Tissues handy, but real.  Real men cry.

Yes, you're going to have that cognitive dissonance. And, you're right, you'll just have to do the best you can each time it rears its head over whatever issue.  There's no script for this and everyone's different.  Don't you just hate that?! It would be so nice if I could tell you, "Now, this is what to expect, down to the last iota, from your wife, and this from you, and this from each son. And this is how it's going to play out and how each of you will feel and what each of you should do about it."   

Your wife will, eventually, have to face this. Let her do it in her own way. Keep in mind the stages of grief.  She's going through them too.  Sometimes we think only the survivors go throught grief and that grief doesnt' start till immediately after death occurs.  WRONG!  As you're learning, you're grieving now.  Grieving what's happening and what could have, should have been, but what won't be.  Your sons are grieivng too. Well, so's your wife. Right now, it sounds like she's in denial.  That's OK. Just like you have to deal with this your way, so does she.  Even if the radiologist attempts to burst her happy bubble, she's going to pick up her grief her way.  You may want to brush up on the 5 stages of grief, because it's something you're all going through now as you grieve the life you planned to have but won't.

Prayers with and for you, Nick.

Grace and peace,

Carol

Me again, Nick, before I go run errands, I just want to encourage you to click on the Melanoma Prayer Center link after my name. Even if you aren't on Facebook, you can read what's there, play the music, and read the notes.  I've got several pages of different kinds of notes and you may find something helpful.  I've been surprised at the positive feedback I've gotten about the MPC. It seems to fill a real need and you may find comfort there also.

Grace and peace,

Carol

Will fought pretty much until he actually died - maybe 24 hours before his death we signed hospice papers.  I told him that if he wanted to keep fighting, I was 100% behind him, if he wanted to move on to what was next, I would support that too.  No one was going to force him to do anything he didn't want to do.  I told him I loved him constantly, that he was the best thing that had ever happened to my life and everything else I could think of that I wanted to say.  When he couldn't talk any longer I kept talking to him, not nonstop, but enough to make sure he knew I would not leave his side, no matter what.  I made rules :  No bright lights in his eyes, no conversations about him while in the room with him.  Other than that, I followed his cues....

 

Not sure if this helps you but what I'm really saying is: do whatever will give you the fewest regrets....

 

Lori

Lori makes some excellent points. Hearing really is the last thing to go, as they say.   And, even though your wife isn't dying, but is suffering some impairment, it's imperative that people talk to her like the person she is.   A positive attitude from those around her is so important, and hope!  If she initiates other types of conversations with some, that's her call.  Otherwise, if as time passes and even now, if there are visitors that just can't control themselves either by crying in her presence or talking about her like she isn't there or by talking to her about death and dying and it's not a conversation she starts, then you'll be the one to firmly usher these people out.  It may even boil down to telling certain people not to visit.  Even now while she's working so hard to be positive, you may well have the family member or friend that just can't behave.

Nick, you and others in your position, you're the guardian of what goes on. You're the one with the task right now of keeping it all together for your wife, your children and yourself.  Not easy by a long shot. You're the one modeling for your sons, young men that they are, how to deal with this later in their lives.  They're making mental notes, even though they probably don't realize it, of how you love your wife and care for her through sickness just like you promised.  They're witnessing what your vows mean to you and they're filing everything away for future reference.

I remind you of that so you'll stay strong to do what you've got to do. For everyone concerned.  Sometimes I've noticed we can fail to act & speak in ways that we'll want our children to emulate.  I better stop.  I'm sorry, I have a way of starting to preach when I don't mean to.

Grace and peace,

Carol

You have received good comments above.  I have been lucky enoigh to miss the brain mets so far.  I do fear it's possibility, but refer people to read the profile of NicOz to realize that even melanoma brain mets may not be an immediate end and the way this young lady fights on may never be her end!.  I so admire this youg lady and her spirit. .She gives hope to us all, inspite of more melanoma brain tumors aoerations and other treatments than I have ever heard of before (or since).

I'm me, not a statistic. Praying to not be one for years yet.