inoperable glioblastoma

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inoperable glioblastoma

by Daveintexas on Fri Feb 11, 2011 08:59 PM

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I was hoping there would be some newer updated posts about dealing with a loved one just diagnosed with inoperable stage 4 GBM.  At 83 yrs. old, my mother had never been sick a day in her life, she's been a world traveler, and an excellant cattlewoman.  Up until the summer of 2010 she could still throw a 50lb bag a feed.  Just before Halloween she was experiencing equalibrium problems.  By Thanksgiving she was using a cane.  She was experiencing left side weakness.  We kept trying to get her to see a Doctor, because we suspected she was having ministrokes.  By New Years she was using a walker and by mid January had fallen several times.  We called an ambulance on 1-18-11 and took the decision out of her hands.  On Jan. 24th after the biopsy we were told of the GBM.  We were told the tumor is deeply embedded in the brain, and forming "grape-like" clusters.  As of today (2-11) she has lost total use of her left side.  She just started Temodar and Radiation on Monday the 7th. 

We have been given conflicting prognosis.  The Neurologist and Neurosurgeon have told us 2-3 mths. with treatment, but the Radiologist and Oncologist are saying 6 mths to a year. 

Besides not having any use of the left side, which leaves her dependant on caregivers for her physical needs, she is still in her right frame of mind, no significant memory loss, and capable of making decisions.

What I can't find out from any websites, is what to expect in her end days?  When do we make the decision IF we should stop treatments? 

RE: inoperable glioblastoma

by ilovemybear on Fri Feb 11, 2011 11:36 PM

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On Feb 11, 2011 8:59 PM Daveintexas wrote:

I was hoping there would be some newer updated posts about dealing with a loved one just diagnosed with inoperable stage 4 GBM.  At 83 yrs. old, my mother had never been sick a day in her life, she's been a world traveler, and an excellant cattlewoman.  Up until the summer of 2010 she could still throw a 50lb bag a feed.  Just before Halloween she was experiencing equalibrium problems.  By Thanksgiving she was using a cane.  She was experiencing left side weakness.  We kept trying to get her to see a Doctor, because we suspected she was having ministrokes.  By New Years she was using a walker and by mid January had fallen several times.  We called an ambulance on 1-18-11 and took the decision out of her hands.  On Jan. 24th after the biopsy we were told of the GBM.  We were told the tumor is deeply embedded in the brain, and forming "grape-like" clusters.  As of today (2-11) she has lost total use of her left side.  She just started Temodar and Radiation on Monday the 7th. 

We have been given conflicting prognosis.  The Neurologist and Neurosurgeon have told us 2-3 mths. with treatment, but the Radiologist and Oncologist are saying 6 mths to a year. 

Besides not having any use of the left side, which leaves her dependant on caregivers for her physical needs, she is still in her right frame of mind, no significant memory loss, and capable of making decisions.

What I can't find out from any websites, is what to expect in her end days?  When do we make the decision IF we should stop treatments? 

Wow, your mother sounds amazing and what an amazing life!  My husband has GBM.  He had surgery to remove all visible tumor 17 months ago.  There is a website, brainhospice.com .  This site has lots of great information and links, but not sure if this is what you are looking for.  I would check it out and see if it helps answer any of your questions.  Sorry I couldn't be of more help.  I wish you peace and comfort on this journey.

RE: inoperable glioblastoma

by Don1500 on Sat Feb 12, 2011 03:52 AM

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Doctors have "6 months to a year" embedded in their DNA. Every doctor I spoke to said the same thing for a year, up to the week before my wife passed. The only one that was right was the first one, 13 months. Everyone after that was just talking.

At 83 you mother has had a fine life, and it sounds like she lived every moment. Celibrate that and know that you will do everything you can to make the rest of it a memory she would like to have. Not a trial of hoses and needels and pain. GBMs steal the brain before life ends, so cram all your love in now, before she loses her hold on reality.

Ask her what she wants for the rest of her life, find out her feelings on DNR. You need that paperwork in place now if she wants it. Make sure her affairs are in order. At 83 I would be surprised if they wern't. Make sure you have someone with the legal authority to make medical decisions for her, there will be a time when she can't.

You will know when to stop treatment. When the doctor says "We can go on...but" It is time.

This next bit is only me, each case is different. If I had it to do over I would not have let her go through Radiation/Chemo/Surgery, in the end it did nothing to stop the beast, it only made the life she had left less enjoyable. But the doctors held out hope, for that I will not forgive them. One doctor did tell me to stop treatment before the surgery, but I didn't believe him. He left the practice the next week.

BTW My wife was 63 and in fairly good health before this.

RE: inoperable glioblastoma

by drien on Sat Feb 12, 2011 05:32 PM

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Hi,

The good news is she is a candidate for some treatment.  When my 83 year old dad was diagnosed, we were told that he was not eligible for chemo, and that radiation therapy would gain us maybe a month.  His prognosis was 8-12 weeks without treatment, and he passed just before the 8 week mark.

I have no regrets about his decision to not seek treatment since we were able to spend really good quality time together and he got to see all the love that surrounded him.

My dad's decline was slow, with a sharp drop about a wek before he passed.

The first couple of weeks post-diagnosis seemed like regular life - he would still get up and vacuum the house, and was autonomous.  As of week 3 he started presenting more and more deficits - harder to find words, problems with mobility and short term memory.

By week 5, I had to move in with my folks since he was no longer able to walk without assistance of some kind.  We went from cane to walker to me carrying him in about 2 weeks.

His final week was not great.  He lost all strength in his legs and body, so where before I would dance him around the house, now I would have to actually carry him.  This is also when his apetite started to decline, and in his last week he missed several meals.

Important:  Every Neuro-oncologist told us we didn't have to wory about dad getting violent.  They were apparently wrong and he had 2 'episodes' where he really lost his bearings and became aggressive.  You need a safety plan for your mom - at some point you will have to essentially baby-proof the house.  Make sure that any sharp instruments (knives, scissors) are out of her reach.

I am so sorry that you have to live this horrible situation.

Sending you love,

Ruben

 

RE: inoperable glioblastoma

by Roselvr on Sat Feb 12, 2011 08:50 PM

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I started replying this morning then stopped. I've been thinking about this a lot today; trying to figure out what I would do if this was my loved one; it's just so hard to say.

The best suggestion I have would be to read posts here- this is where I stopped this morning because I was trying to figure out a way to tell you who's posts to read because you can't see their names; only their avatars. Look at the ones that have lost their fight in the last few months; then do some speed reading by clicking on their profile; read a few of their posts on that page; that should give you a pretty good idea of what to expect. The problem is; I'm not sure how many people we've had her age. This damned BC has taken a lot of people lately from young (30's) to older.

My FIL lost his BC battle 5 years ago next month. He walked around about 6 weeks before passing- from the time he went to the ER to when his fight ended. He'd been complaining he wasn't feeling right for about a year. In that time my dad was also sick; went in for a prostate biopsy & never recovered; turned out he had terminal leukemia; so we had 2 "sick" at the same time; one just did not know it. I can tell you that out of the 2; my father in law was able to live his life from May/June until he lost his fight in March. My dad on the other hand was hospitalized for about 2 months; & lived going back & forth to the cancer center for transfusions 3 times per week. He was very weak.

I have a neighbor that's 87; his lady friend was 82 when she passed. I can tell you what I know about elder people & how their body does not bounce back. His lady friend Gloria had her hip replaced at 81 & never recovered; she was gone before a year passed. My 87 year old neighbor has been going down hill since he had a small fall about 6-7 years ago; he fell again a month after his lady friend passed; this time breaking ribs & puncturing a lung. It's taken him 3 to 4 months to get back in the swing since then. He feels his knee gave out on him; has been looking into having it done but everyone is telling him not to because most people that age that have surgery do not survive long.

I'll see if I can find the list of questions I posted a few weeks ago. Not sure if I saved them for my ex-mother in law who has a tumor. The questions were pretty good; I suggest you think about having a hard discussion with the doctors; though I'm not sure if they will be honest; hopefully they will. I hate to say this; but I read the posts here & my heart breaks because of the low quality of life when they get treatment & I'm relieved that my FIL was able to live his life. I'm not sure my MIL would have been able to watch her husband suffer.

I'm so sorry that you have to know this horrible cancer.

RE: inoperable glioblastoma

by Roselvr on Sat Feb 12, 2011 09:04 PM

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  Here are the questions. You have answers to some. I'm just going to paste them in; the 1st few I have would be the main ones I'd ask. You may want to ask if they've treated many people her age.

  • What is the goal of treatment (cure, prolonging life, relieving symptoms, etc.)?
  • What are the possible risks or side effects of treatment?
  • Will treatment relieve any of the symptoms I now have?
  • How will this treatment affect my daily life?
  • What are the possible risks or side effects of treatment? What disabilities might I develop?

------------------------------------------------------------------

  1. What type of primary brain cancer do I have? What is the cell type? What is the grade of my cancer?
  2. Where can I find further information about this cancer and treatment options?
  3. What part of my brain is affected by cancer? What does this region of the brain do, and how is the cancer affecting its function?
  4. Will it be possible to surgically remove my tumor?
  5. Will I need any other treatments such as chemotherapy or radiotherapy after surgery?
  6. What are the possible side effects of these therapies? How should I manage these side effects?
  7. How will these therapies affect my symptoms?
  8. What are my chances for beating this disease?
  9. Will there be any lasting problems from this disease or its treatment?

Good questions at this link- http://goo.gl/TwWZT (not pasting all in)

  • What type of brain tumor do I have?

  • Is the tumor benign or cancerous?

  • What is the tumor’s grade? What does this mean?

  • Can you explain my pathology report (laboratory test results) to me?

  • Will an experienced neuropathologist review my pathology slides?

  • What are my treatment options?

  • What clinical trials are open to me?

  • How many brain tumors do you treat each year?

  • What treatment do you recommend? Why?

  • What is the goal of this treatment plan?

  • When should I start treatment?

  • Should I get a second opinion?

  • Do you attend expert meetings to discuss complicated tumor cases?

  • Are there brain tumor centers of excellence that you recommend I contact?

  • Does your practice include multidisciplinary care? What does this mean?

  • Who will be part of my health care team, and what is each person’s role?

  • What are the possible side effects of each treatment, both in the short term and the long term?

  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?

American cancer society link to brain section- http://goo.gl/UsL6l  & their list of questions-

  • Are there other tests that need to be done before we can decide on treatment?
  • How much experience do you have treating this type of cancer?
  • What treatment choices do I have? What do you recommend? Why?
  • What is the goal of treatment (cure, prolonging life, relieving symptoms, etc.)?
  • Will treatment relieve any of the symptoms I now have?
  • What are the possible risks or side effects of treatment? What disabilities might I develop?
  • What should I do to be ready for treatment?
  • How long will treatment take? What will it involve? Where will it be given?
  • What is my expected prognosis, based on my cancer as you view it?
  • What would we do if the treatment doesn't work or if the cancer recurs?
  • What type of follow-up will I need after treatment?
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