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Medical Forum / Diseases and Disorders / Cancer / April 2004Avastin and dementia
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 > 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 [quoted text clipped - 8 lines] > Does anyone know if the dementia could be related to the Avastin? Thank you > for any information you may have. - Sherry Hello Sherry, I'm sorry about your mother. I can't find a direct connection but: 1) http://nyneurosurgery.org/hydronph.htm 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 hemorrhage. 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. Sincerely, J > > 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 [quoted text clipped - 27 lines] > severe chronic health conditions? Was she symptomatic? Could they not put a > stent in to prevent blockage? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > 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 [quoted text clipped - 8 lines] > she's not able to make her own decisions nor perhaps understand the risks or > side effects of cancer treatments. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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? ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > 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 [quoted text clipped - 4 lines] > 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. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > 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." ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ 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 c's............ :-( 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 judged some. Lily Mae ~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > Please think about these issues. > [quoted text clipped - 3 lines] > Sincerely, > J 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 (again). And thanks again for your support. Sherry > > > My mother is 92 years old and has Stage 4 colorectal cancer, as well as > NPH. [quoted text clipped - 140 lines] > > Sincerely, > > J > 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 [quoted text clipped - 24 lines] > > Sherry Sherry, as an oncologist, it grieves me to hear this story.......... > > 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 [quoted text clipped - 31 lines] > Sherry, > as an oncologist, it grieves me to hear this story.......... 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? Lily Mae > Thanks for clearing that up. I hope I didn't hurt your feelings. You didn't, the oncologist did...... > I was > telling my mom about it, actually I print all the group issues out and she [quoted text clipped - 7 lines] > you're crazy. Is her dementia and delusions documented? > Lily Mae > 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 [quoted text clipped - 24 lines] > > Sherry <big snip> Hello Sherry, It's okay, I understand that miscommunications occur over the internet. 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 http://groups.google.com/advanced_search Here's an example of laws for Wisconsin and perhaps "material abuse" would apply http://www.dhfs.state.wi.us/aging/elderabuse/ 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 persons 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 listen 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 for. 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. Hugs J 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 drug. 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 much better. - Sherry > 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 [quoted text clipped - 20 lines] > > - Sherry 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. 5FU? 5-Fluorouracil http://www.bccancer.bc.ca/HPI/DrugDatabase/DrugIndexPro/Fluorouracil.htm 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 that). 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 rest. Keep in touch and let us know how it goes. Hugs Sherry, J |
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