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 LBD and cancer 
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Joined: Sat Jun 21, 2014 1:54 pm
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Post LBD and cancer
Our mom was diagnosed with cancer, an aggressive variety. We are currently treating her with a mild chemo and she is declining. She has full on aphasia and poor body function control, confusion and forgetfulness.

Anyone else have experiences related to chemo or radiation and LBD?


Sat Jun 21, 2014 6:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Post Re: LBD and cancer
Do you mean she has LBD AND cancer? If so, why is she receiving cancer treatment? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jun 21, 2014 7:55 pm
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Joined: Sat Jun 21, 2014 1:54 pm
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Post Re: LBD and cancer
Yes, the physicians felt that it was such an aggressive type of cancer we should not do nothing. They felt that this would only further complicate her situation.


Sat Jun 21, 2014 9:11 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
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Post Re: LBD and cancer
Although you haven't described the whole situation, I am wondering if you read much about the concept of "slow medicine"? Before treating someone with LBD, which is eventually fatal, I suggest you might read about "life saving" interventions and slow medicine. Have you consulted several doctors about her being treated for cancer? What are the objectives for treating her under the circumstances? Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sat Jun 21, 2014 9:19 pm
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Joined: Sun Mar 30, 2014 5:11 pm
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Location: Hawaii
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Post Re: LBD and cancer
Welcome to the forum, Jstuckert1! Sorry that your mother is burdened with both cancer and LBD. Lynn has posed some important questions that you and your family will want to consider, before proceeding with any further treatment. Quality of life and comfort for your mother are what's most critical now, given that these two diseases have progressed as far as they have. Have you considered a hospice consult? Please let us know how you're doing and how we can help. AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sun Jun 22, 2014 2:37 pm
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Joined: Sat May 25, 2013 3:53 pm
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Post Re: LBD and cancer
Welcome to the forum jstuckert and very sorry to hear about your Mom. To treat or not to treat for cancer is a very difficult decision and one each of us has to make personally or in consultation with our loved ones, if they're able. We had to do this for my Dad. In his case my siblings and I, and, I believe, my Dad, all felt the same way so our decision was straightforward. Each case is different and the decision is a very very difficult one. Thinking of you!

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Gail, Forum Moderator & daughter of Doris who passed away Dec. 2010 after living with LBD for 7 years.


Fri Jun 27, 2014 10:52 am
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Joined: Thu Aug 15, 2013 5:39 pm
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Post Re: LBD and cancer
My husband most certainly has LBD but will not go see a doctor and get a dx; started showing some signs about 10 years ago. He had lung cancer 5 yrs ago and is currently without cancer in his lungs. Now he has been dx with small cell cancer in his lymph nodes; he hasn't been scanned yet so don't know the full extent of it. I remember when he had chemo before how his cognitive abilities declined and never returned to pre-cancer level. His cognition has declined so that now strangers can tell that he has confusion. My concern now is what will happen when he has chemo this time. I don't really anticipate a reply, but so stressed out that I need to tell someone...giving my daughter a bit of a break. I retired to be with Don because I didn't want to leave him home alone anymore & then his lymph node enlarged last month; even the Dr. Is surprised at the rapidity of growth! Anyway thank you all for "listening". Connie


Fri Jul 03, 2015 3:48 pm
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Joined: Sun Mar 30, 2014 5:11 pm
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Post Re: LBD and cancer
Connie, this sounds like a very stressful time for you and your husband. I'm so sorry to hear that he has developed another type of cancer. The lung cancer sounds bad enough, and just when you thought the cancer was gone. ..

Maybe the new cancer will be slow growing and not need immediate treatment. Let's wait for the test results.

You say that he hasn't been diagnosed with LBD yet. I was reading over previous posts. Certainly, his primary care provider must have some opinions as to what's causing your husband's cognition problems.

I guess I'm in the camp that's is better to know (at least you should know) what the probable diagnosis is. That way you'll know what to expect in the future, as well as know how present symptoms can be treated, both pharmacologically and non-pharmacologically. Not knowing can be more stressful! I'll write more tomorrow, but I wanted to let you know, Connie, that we're here to listen to you and be a resource. Hang in there! ! Anne AAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sat Jul 04, 2015 4:56 am
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Joined: Thu May 15, 2014 10:41 pm
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Location: Phoenix, AZ
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Post Re: LBD and cancer
Connie - What Anne said. You might want to discuss your fears about LBD and your husband's cognition (in particular his earlier reaction to chemo) with the oncologist too. It's best if they know how their treatments might adversely impact their patient. You might want to bring them (and your husband's primary care doc) some of the handy resources from this site. It might encourage them to dig a little deeper themselves, or discuss with other specialists.

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Molly - Forum moderator. My dad's career as a geologist was interrupted by PD and LBD in 2009. I was a respite caregiver for my dad (lived out of state, but visited many times a year). He passed away peacefully in April 2014.


Sat Jul 04, 2015 11:40 am
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Joined: Thu Aug 15, 2013 5:39 pm
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Post Re: LBD and cancer
Anne,
I too want as much info as I can get...my husband on the other hand is part ostrich. He is not interested in what he doesn't understand and is not inclined to learn. As for his doctor, well he is not mine. I gave him info and asked that Don be given a test...Don was given a memory test (which he passed) and I don't know what became of the lbd info. His doctor makes snap diagnosis w/o asking questions!
Anyway, next week will be busy w/tests & appointments w/ his oncologist. At this point, it is difficult for me to believe that people can't hear Don's difficulty in understanding; maybe they think it is just hard for him to understand medical stuff. They should have seen him trying to put up curtain rods...2 hours for what should have been a15 minutes job, but he was determined to do it himself.
Connie


Sat Jul 04, 2015 11:47 am
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Joined: Sun Mar 30, 2014 5:11 pm
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Post Re: LBD and cancer
Connie, others (including medical doctors) may not necessarily notice any difficulty Don may be having in understanding what's being said. Unfortunately, when the patient is elderly, doctors may assume he's hard of hearing, short of sleep, senile, slow, etc. As long as you're with him, the doctors can direct comments to you, and you can translate and transmit to Don later; that's what they may be thinking.

You may have to exert more control over your husband's care, starting with taking him to another doctor. Maybe you can take him to yours, without too much fuss. If not to yours, perhaps you can find a Geriatric Internist or Geriatric Neurologist to evaluate Don. He doesn' t have to care much about what's going on; that's part of the disease -- apathy. So, you have to care for both of you!

I agree with Molly. The oncologist has to know about Don's suspected LBD, especially in light of the side effects on his cognition during his last encounter with chemo. But the oncologist is not going to diagnose him with LBD; that's not his or her specialty. That's where the new doctor comes in. As Molly suggested bring in some of the resources from this site, such as the symptom checklist, to the new doctor. That's a start! Let us know how you're doing. AnneAAA

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AnneA -- Forum Moderator; also daughter, caregiver, and patient advocate for Jean, who died of LBD in January, 2013, at age 91.


Sun Jul 12, 2015 6:16 am
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