Sherry 2010-02-25 08:26:11
My mother is 92 years old and has Stage 4 colorectal cancer, as well as NPH.
She suffers from dementia and delusions. She has been taking chemo for 18
months, and about 6 weeks ago her doctor started her on Avastin in addition
to her other chemo. Her dementia seems to have gotten much, much, worse in
the last 6 weeks, but I cannot find any evidence that the two are related.
Her oncologist refuses to believe that any of her other problems (including
being hospitalized for 3 times with pneumonia in the last year) are related
to the chemotherapy. She obviously cannot be treated for the NPH, because
she would never survive brain surgery.
Does anyone know if the dementia could be related to the Avastin? Thank you
for any information you may have. – Sherry
J 2010-02-25 08:26:25
Hello Sherry, I’m sorry about your mother.
I can’t find a direct connection but:
Normal Pressure Hydrocephalus or NPH is a type of hydrocephalus which typically
arises in adults in their late middle life and beyond. The condition gives rise
to gait instability owing to a sense of imbalance, particularly when turning,
urinary incontinence and progressive dementia.
2) http://www.rxlist.com/cgi/generic3/avastin_wcp.htm#W mentions various types
of hemorrhages including brain.
Our Lowkey (who was much younger but had Stage 4 colorectal cancer also) was on
a different brand of similar chemo last Fall and he passed away from a brain
3) I have to wonder what your goal is by treating a 92 year old with other such
severe chronic health conditions? Was she symptomatic? Could they not put a
stent in to prevent blockage?
4) I have to wonder what your point is to try to prove a link? Can you (or
whoever has her power of attorney of care) not just say “stop the treatment” and
hire palliative care?
Every treatment has its potential side effects. Perhaps Stephs “Questions to
ask” (archived from previous posts) would be a helpful treatment algorithm for
you and the family
It’s located here http://tinyurl.com/vh34
I would suggest that you print it up and take time to digest each question and
think about it. And talk to the family about it. Obviously if she has dementia,
she’s not able to make her own decisions nor perhaps understand the risks or
side effects of cancer treatments.
I’m not dispassionate about this. Every life in important on this earth. My own
grandmother had some form of dementia from the age of 60’ish until she passed
away in her mid-90’s. Nobody would have put her through surgery nor chemo, if
she’d had cancer. (For all I know maybe she did, some cancers are only found
after a person has passed away). Her husband did have cancer in his late 80’s
or early 90’s. He declined treatment and passed away about a year after her at
about the age of 93 or 94. There’s only so much time we can expect out of a
“lifetime”. I loved them dearly and it’s hard letting go.
I’m borrowing from a recent post by Tim on the other newsgroup “There has to
come a stage when we commit
to a landing and quit trying to fly the plane, but try to put down gracefully.”
Please think about these issues.
Stay with us and let’s talk about my questions. I’ll be here if I can be of
assist in other ways.
Lily mae 2010-02-25 08:26:56
I felt the same way when reading your post Sherry, this woman at her age and
mental capacity needs relief and pallative care not more trauma. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Exactly! Not putting you down but you need to think of your mom, is it in
her best interest? Quality of life and dignity is very important in the
latter of life especially. Is someone helping yu with information and
decisions? I can’t believe a dr. would do this to a 92 years old woman? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
There’s no easy answers, we all have to live with our own decisions but your
mom has to live with others others decisions snd not her own… ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Well put J and originally Tim.
Sherry, we all want our parents to live as long as possible and it will be
hard to miss her but watching these treatments and what it will do to an
otherwise healthy body is hard. I suggest you rethink your decisions here.
I’m so sorry for your situation.
My mom has lung cancer and is 70 now. She fought a hard battle and sort of
won(remission) but her health is still bad a year and a half later. If
something else crops up I would never expect her to undergo any more chemo
and radiation. It’s her decision. Small cell or non-small cell has a lot to
do with it too. Mom’s was slow growing non-small cell. We might sound like
we a judging you, we a giving you our experiences. There is a time to quit
and just enjoy the moments you have left.
Good luck and watch your health too because the care-givers go through a
rollercoaster ride and get all kinds of problems too. Personally, I’m on
antidepresants and gained 50 lbs in 4 months, stopped exercise for 2 years
and now suffer back and bone problems (arthritis and osteoporosis). I’m
trying to get it together now. Mom’s health been a 3 year battle for my
brother and I. He is also on medication for depression and we are both in
therapy and get massages and try to take care of our selves. He and I are
close to fifty years old. I’m exercising at a place and have lost 15 lbs so
far. I’m in school and was Phi Theta Kappa(honor society) and now getting
When you are in the middle of the situation you forget about yourself but
believe me your body/mind will tell you soon that it has to have relief
somehow. It will bring your family to it’s knees if you’re not careful.
Sorry I rambled but I want you to know we care and I know you willl feel
Sherry 2010-03-03 02:30:12
Lily Mae and J, thank you for the responses, but I don’t think I made my
question clear. I have been trying to get my mother to agree to stop the
chemo since it metastisized to her liver. That tumor is continuing to grow.
She does not understand that chemo will not cure her, in spite of her
primary care physician and her neurologist talking to her about it. She
insists that she has to continue, and her oncologist refuses to listen to
anyone. When I tried to talk to him about the NPH, he said (in front of her)
that I had decided to not allow her to be treated. What had happened was the
neurologist suggested that she would not be able to survive the treatment,
and I concurred. When I tried to talk to the oncologist about the rapid
decline in her cognitive ability, he walked into the examining room and
said, “your daughter thinks you have dementia – so who’s the president of
the United States?” and when she answered correctly he turned to me and
said, “See, she’s fine.” So that’s what I’m dealing with here. The only
think that I can figure out is he wants to write some kind of paper or
something on Avastin and elderly patients. As far as I can tell there was no
one over 75 in the trial group, and I’m very sure there was no one with
dementia, given that consent is such an important part of those studies.
Anyway, hopefully that explains everything a little better. I set up an
appointment for Mom with her neurologist next Tuesday, and on Wednesday
she’s seeing her primary care physician. Both of them think that the chemo
treatments should be stopped, so maybe they can talk to the oncologist
And thanks again for your support.
Steph 2010-03-03 02:30:22
as an oncologist, it grieves me to hear this story……….
Lily mae 2010-03-03 02:30:57
Thanks for clearing that up. I hope I didn’t hurt your feelings. I was
telling my mom about it, actually I print all the group issues out and she
reads them. We both thought that that oncologist is a criminal. She said
“What type of person would do that to an elderly lady” “What’s his gain?”
Now I see, I would report him to a board or get her out of there. He seems
to not care if he kills her. Get a second opinion. Ask around about this
guy. One thing I found out thru mom’s process is to be proactive not
reactive. Geeze, I wish I could go in with ya. Fight for her life, get
others in your family to help. Do anything, don’t let them make you think
you’re crazy. Is her dementia and delusions documented?
Steph 2010-03-03 02:31:10
You didn’t, the oncologist did……
J 2010-03-03 02:32:17
Hello Sherry, It’s okay, I understand that miscommunications occur over the
It’s so much easier, I would think, in person.
I have some thoughts to run by you.
My thought while driving into town was this is a form of elder abuse.
So you may want to look into “elder abuse” and your state laws by using Google
Here’s an example of laws for Wisconsin and perhaps “material abuse” would apply
2. Material abuse, sometimes called financial exploitation, is the misuse of an
elder’s money or property. It includes deception, diverting income,
mismanagement of funds and taking money or possessions against a person s will.”
The deception would be the oncologist not telling her outright that she is going
to die from this cancer and suggesting the option of palliative care. He’s
giving her false hope in my opinion and taking her money (either case or by
means of insurance coverage that she might need for palliative care).
You did not answer if there’s a frank (and/or large tumour) in her colon. If
there is, surgery would be out of the question, probably even for a stent. And
the risks are not worth the return given that her liver is involved.
On the other hand, dying of a blockage is not pleasant. And at this point, we
have no way of knowing if the chemo is shrinking or keeping such in check.
On the other hand, if they found polyps or lesions in her colon (but not
significantly large), she could well have lots of time before she became
symptomatic. I thought I read where cancer grows more slowly in elderly persons
(maybe Steph could comment), probably due to lower blood supply.
So in the former situation (possible blockage/perforation), is it kinder for her
to die from chemo or complications?
In the latter situations (cancerous polyps or lesions in the colon), she may
well have some quality time left to enjoy some time without treatments.
Anybody in the US can answer who the President of the US is. His face and name
are all over the news, radio and TV.
I don’t feel that’s necessarily a sign of her being competent enough to
understand about cancer and chemo, especially if he hasn’t shared how serious
her prognosis is. But now you’re getting into possibles of:
1) 2nd and/or 3rd opinion from oncologists (which she might refuse or refuse to
2) hiring psychologist, neurologist or some other expert to prove that she’s too
demented to make her own choices
Who diagnosed her with the NPH – would (s)he be willing to reevaluate her under
the guise of a “checkup” appointment ? and be willing to issue to statement on
paper? If so, the power of attorney and/care contacting the insurance company
and asking them to advise the oncologist that no more treatments will be paid
3) involving lawyers and courts. It’s been done before (or tried) in a child’s
case, but the wheels of law are slow to move. Reverse situation, the parents
refused treatment for a child.
A “stay of treatment” is the term that comes to mind, but I may have make that
term up. But then the costs shift to paying for lawyers in the meantime. And you
could possible be villified in the press, by friends and relatives for
“preventing your mother from seeking treatment for her cancer”. OR even worse
“she wants her mother to die, so she can get the estate or insurance”.
Difficult position to be in.
Those are my thoughts for now,
I’m very sorry about this situation.
Keep in touch and let us know how you are doing.
Will try to be here.
Please forgive if some of my thoughts are upsetting to you.
Sherry 2010-03-03 02:32:46
On the medical history question, they removed a 10″ section of her bowel in
July 2002 after having her first colonscopy. The chemo then started in
September, three out of four weeks with fluoro(something). Last fall (2003)
a cat scan showed a spot on her liver and that was confirmed with a PET
scan. The fluor(?) continued, and then when Avastin was released he started
it almost immediately. He never discussed starting her on a new treatment,
or give us the literature or anything that is supposed to happen with a new
The NPH was diagnosed after it was clear that she was shuffling more an and
more and was pretty delusional. It was probably exacerbated by infection.
Her Hickman got infected and she was terribly sick, and she has been pretty
delusional ever since, but that has gotten much, much worse since he started
her on the Avastin. I am very comfortable with the neurologist who did the
diagnosis, and he is going to see her this next Tuesday. Hopefully he and
her internal medicine doctor will stop the train. Otherwise, I’m going to
stop it. I don’t think she’ll actually figure it out. Who knows?
Anyway, thanks again for the support. My internal medicine guy is really
good to talk with (and he’s getting very concerned about my health), but
getting a perspective from others who have been through this makes me feel
J 2010-03-03 02:33:25
Hi Sherry, Just to be clear I’ve not gone through this (myself).
I am happy to hear that a blockage or perforation is not in the picture since
they removed that section of the bowel.
You may want to find out or check with the internal medicine doctor as to if
she’s still on (or should continue) antibiotics and whether the hickman would be
required for that. (some people’s veins are difficult to access for IV
antibiotics and sometimes oral antibiotics are not enough or if it’s better to
leave it in, in case she recovers and does go back to the oncologist?) And in
my opinion, she still has a right to not have an infection. I also read that
sometimes the connections between the bowel parts don’t seal properly and
infections can come from there. At home palliative care can help with all of
those issues in concert with the internal medicine doctor.
Crosses the blood brain barrier – you’ll have to read the rest.
Since there’s infection, we have to think ahead, that the infecton is/has
affected her brain and once recovered, she could very well change the course by
going back to the oncologist. If that happens, before she does, run Steph’s
“Questions to Ask” by her while hopefully her head is less clouded. I’m
actually hoping that will happen (she’ll get and feel better) off the Avastin
and have quality of life back, and as you said earlier, since there hasn’t
seemed to be a response and the liver cancer is growing, why continue ? If you
can, try to get her medical records from the oncologist’s office, so you can
know exact medications what she was taking (in case some should be continued)
and what was found and where (diagnostic imaging, unless you already have all
I’m sorry you have to go through this, it must be very stressful for you.
Hopefully you’ll have time to take a breather after this and you can get some
Keep in touch and let us know how it goes.