8-12 Weeks!?

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8-12 Weeks!?

by KrisInk on Sun May 15, 2011 10:47 AM

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Took my dad to Dana Farber Cancer Institute (DFCI) on Wednesday.  MRI showed that the beast has now taken over.  Two months ago, tumor was stable.  Now, it is headed toward his brain stem.  They are saying he likely has 8-12 weeks, perhaps 3 months, with much of that end time not being active.

I just don't get it...he is walking around, talking, driving, working in the yard, and feeling pretty great today.  But, he'll be dead in that time?  What the heck?!

So, he had surgery last May, followed by radiation, then Temodar, did a clinical study with Temodar and XL-765 (failed in December), and is now on Avastin (since December).  The nurse practitioner we saw on Wednesday is not offering any other treatment, as she fears it will be toxic to him.  So, this is where the journey ends?!  

We're trying to get them to do something more, to help him make it through the summer, to attend his granddaughter's dance recital and kindergarten graduation, to spend some final time together this summer...we thought he had it in him.  And this is it?!?  I want more! He wants more! We expected more from this cancer institute and from the end of his life.  The medical provider seems to have given up.  And, I'm not sure I want to give them the permission to do that.  What else can we do?  Supplements, diet, exercise, prayers all continue (and are all stuff we initiated on our own).  But, why the heck aren't they offering him more?

8-12 weeks...what the heck???

RE: 8-12 Weeks!?

by I_love_Gary on Sun May 15, 2011 04:27 PM

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I'm so sorry.  I don't have answers, how could I when even the docs can't predict what will happen if........but some of my thoughts as I read your post are these:

1.  If he is so good right now, is there a chance that he should enjoy this good time for as long as he can, without the debilitating effects of some toxic treatment?  He can spend lots of quality time with that granddaughter, doing all kinds of special things, without focusing on a single event so far away?

2.  It sounds like the medical team are being honest enough to give him a chance of quality life today, without making promises that they can't keep.  Of course there are things to try, but how many people are successful with them, and how much time can they buy?  Is it worth it?

3.  All those supplements, exercise, etc, are probably paying off, and no one can predict a time line, so maybe he is looking at more than 3 months!  Maybe less, but maybe more!  What does HE want to do with what is remaining of his life?

4.  Is there any chance that going back to the temodar, after such a long break, and changing up the schedule, could have a slim chance of working?  He wasn't on it very long, as I estimate about 6 months, so it would be the safe and simple thing to try, at least it could be stopped quickly if he didn't handle it.  The dose could be experimented with.

5.  I honestly don't think that there is anything more effective to try....I know, there are lots of 'idea drugs' out there, but nothing with a good reputation yet.  Nothing without side effects.  Nothing with the track record of Temodar.  If it were me, I would ask to give it one more shot.  Avastin doesn't work for long enough, he wouldn't be eligible for vaccines, the older tried and true drugs that work for other cancers are not doing much for brain, and most are extremely toxic. 

6.  My last thought is, why does the nurse practitioner get to make decisions?  Where is the oncology doctor?  Do you have another appoint to see the whole team?  I would do some more investigation with the team as a whole, and then ultimately respect whatever your dad decides.

My hope is for your dad to do well all summer.        DL

RE: 8-12 Weeks!?

by vwxyz on Sun May 15, 2011 10:37 PM

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My sentiments exactly to the both of you, except I would hope and pray your dad can surprise everyone by living much much longer than expected and the temodar can be reactivated and works this time as well.   Jan

RE: 8-12 Weeks!?

by DadinPa on Mon May 16, 2011 03:34 AM

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It's not right! And I am so sorry. My dad is battling a GBM and they currently put him in hospice care. It has been a seven month battle. How can they say they are done! I want to scream, do something, don't give up on him. I hope for many many many happy days for you and your family.

RE: 8-12 Weeks!?

by ILoveMyHusband2 on Mon May 16, 2011 11:14 AM

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I am so sorry that you feel like you have hit a wall, we are in the same place.  I would get the team together and see if they could "brain-storm" and reconsider treatment for your Dad.  I will tell you that my husband is going on two months with NO TREATMENTS.  The last time he took Temodar was in January, he actually did 5 cycles of 5/23 and tumor still grew.  We abandoned Temodar and he started and ended Avastin on March 28th.  He developed a serious dvt in his right leg and had PE on his lungs.  They started him in on blood thinners six days after the Avastin treatment and he started experiencing serious nose bleeds. Now he is taking daily lovenox shots.  No more Avastin. He is still holding strong despite no treatments. Of course, we do not know for how long this will last (drs don't know either), but, we are doing everything he wants to do as long as his body and mind permits.   Don't wait for better or worse times.  Now is the time, while he is still driving and working and living life (even with the horrible monster) to get busy living!!!  I pray every second of the day that something better, less toxic, will come along to help get rid of this aweful disease.  Talk to your Dad, maybe he would consider a second opinion.  Good Luck to you and don't give up looking for another treatment path if that is the choice he makes.

RE: 8-12 Weeks!?

by ASurvivor on Mon May 16, 2011 01:34 PM

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I respect your dad for his fighting spirit. I sure wish that we could be supplied with more arrows for our quiver when fighting the brain tumor beast. When I was in grade school, the nuns would often sing a song that included "God loves a cheerful giver --- give it all you got ... He loves to see you laughing when your in an awful spot". They are right. Fight on but be sure to enjoy each day that you are given with your dad.  If your quiver empties, fling it at the eyes of the beast.

Good luck. Bill  

RE: 8-12 Weeks!?

by number9 on Mon May 16, 2011 09:47 PM

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KRIS, omg. Heart punch velocity … 8 - 12 weeks?!?!?!  Your Dad “walking around, talking, driving, working in the yard, and feeling pretty great” … what an incredible blessing. May that quality linger these next few months and beyond. I share in thoughts & echo DL’s post. 

Personally, my Mom did her best to stretch quantity which came at such a cost in quality. Hoping my reality as I witnessed of my Mom in her battle does not become your reality while stretching quantity.  QUALITY all the way my friend!!!!!

You have been amazing in tandem with your Dad since dx and honoring his wishes. My hope is for his comfort to continue as precursor in the days ahead.

Thoughts and prayers your way Kris, and for all of you who posted above …

De

RE: 8-12 Weeks!?

by mlruoro on Wed May 18, 2011 04:14 AM

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I feel the same way.  But, my mom's doctor hasn't given a timeline.  He just said, "You might be interested in getting a hospice consult".  So I did.  My mom is going to leave the nursing home and move in with us.  Last week I had decided against it but, now I feel strongly that this is the right thing.  I just can't take being away from my husband and 11 year old daughter anymore.  It will be hard, but, it is important.

Anyway, to get back to you...I am so sorry that you are going through this.  Keep up the prayers.  Ask God for healing, peace, comfort and wisdom.  Remember, that sometimes, God heals people by taking them home.  It is hard for me to accept and I am sure it make you upset to hear that.  But, GBM is a horrible tumor.  I was so hopeful for the last year -- my mom was too.  She is not upset right now and today I am okay.  But, the fact that my mom might not be here for all the special family events breaks my heart.  How will I live without her?  What the heck is right!  GBM sucks!!!

Spend time with your dad doing things you enjoy.  Or, just be together doing nothing but hugging.  Smell him, talk to him, ask questions, hold his hands, give him massages.  Just be present as much as possible and thank God for your time together. 

So sorry.  I know it is hard.  Peace to you and your family.

 

Maria

RE: 8-12 Weeks!?

by CelPB on Wed May 18, 2011 04:03 PM

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Kris, I'm sorry to hear this news, and I sincerely hope and pray your dad will have more time with the family.  I too feel "what the heck??" when I read your post.  Keep up with what you're doing though as I think it's giving him the quality he has now. 

Love, HOPE, and strength to you,

Celeste

RE: 8-12 Weeks!?

by brianh777 on Wed May 18, 2011 09:56 PM

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I don't understand that either.  We always stayed away from doctor advised timelines, although i know enough now from research and what not to know the idea.  You can't go by 8 weeks, (10 weeks, 3 months,  1 year) on ANY case.  When we had our diagnosed on the brain stem (8 months ago) it looked bad, 6 months ago when they said it spread to the spine/spinal fluid it looked bad (they say its around 3-4 months from that point).  Now that they have stopped the treatment (quality of life) we are surprised every day that she is still talking and thinking clearly.  I feel blessed that even though the kids are going through something that no kids should ever have to - even though she is confined to bed/wheelchair with supports to hold upright she is still congant and able to be with the family.

Wow, just wrote a huge paragraph that boils down to enjoy the time and don't let anyone put you on a timeline.

:)

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