Small Cell Lung Cancer Survivors And Dementia

My husband was treated for small cell lung cancer in 2001.  He was one of the lucky survivors due to early detection.  In addition to chemo, he was given whole brain radiation.  I started noticing symptoms similar to Alzheimer's disease 3 years ago.

  I wanted to know if any of you have had similar experiences.  No one told me this was a possible result.  For spouses only, the Alzheimer's spouse support message board (google & sign up) is the greatest all time support group for all dementias.  They have welcomed me with open arms.  Since the symptoms mimic Alzheimer's I feel completely at home there.  I didn't even know what whole brain radiation was until I went there.

All demetias are terminal.  So you may win with the cancer, but the dementia will get you in the end.

I would really like to hear from anyone who has a spouse who was given prophylactic whole brain radiation for small cell lung cancer who has developed dementia symptoms.

Hi. 

My mother was diagnosed with stage IV lung cancer with mets to the brain in Feb 2006.  She underwent whole brain radiation in Feb 2006, then a series of chemotherapies (Taxol, Tarceva, Taxotere, Velcade, halichondrin, and now Alimta).  The brain mets were stable for a while, but a new lesion was found in November 2007.  She had partial brain radiation for this.  Since December 2007 I noticed dementia-like symptoms and I had researched the brain radiation can cause this.  In April 2008 the cancer in the lungs and in the brain started progressing again.  We opted against brain radiation this time (that would have been her third brain radiation and we thought it would be too much already).  She has been on Alimta since April and has been responding to it (thank God).  The cancer in the lungs and the brain has been stable.  But the dementia-like symptoms are still there.  Her vision and hearing have deteriorated significantly.  She sometimes has difficulty telling if it's morning, afternoon or evening.  She easily gets disoriented and her memory has slowed down.  In spite of all this, we're still thankful to the Lord that she's still with us.  She still knows us and we can still talk to her, exchange stories (sometimes she forgets, sometimes she remembers) and enjoy life with her. 

I'm just curious, what kind of dementia-like symptoms is your husband experiencing?

Thanks. 

My wife underwent WBR in March 07.  She had 20 treatments over 30 days.  What I have read was this is generally reserved as pallative treatment, for those who are not expected to survive over 2 years.  The theory is that the dementia will appear after 2 years so the WBR is worth the risk to extend life.

She is rapidly approaching the 18 month mark and has absolutely no signs of recurrence anywhere.  If she doesn't fall ill to the cancer, then we too may be faced with a long term dementia problem and a long term care situation.

The only effects she has thus far is a change in her walk or gait, ocasional balance problems (she fell backwards going up stairs) and is prone to anger these days.

I would like to hear more about long term WBR survivors.

 Thanks, Paul

On 7/19/2008 oneGaia wrote:

My husband was treated for small cell lung cancer in 2001.  He was one of the lucky survivors due to early detection.  In addition to chemo, he was given whole brain radiation.  I started noticing symptoms similar to Alzheimer's disease 3 years ago.

  I wanted to know if any of you have had similar experiences.  No one told me this was a possible result.  For spouses only, the Alzheimer's spouse support message board (google & sign up) is the greatest all time support group for all dementias.  They have welcomed me with open arms.  Since the symptoms mimic Alzheimer's I feel completely at home there.  I didn't even know what whole brain radiation was until I went there.

All demetias are terminal.  So you may win with the cancer, but the dementia will get you in the end.

I would really like to hear from anyone who has a spouse who was given prophylactic whole brain radiation for small cell lung cancer who has developed dementia symptoms.

Dear oneGaia,

What types of symptoms are you talking about?  My husband (small cell lung cancer) had cranial radiation as a precaution 2 years ago.  His lung cancer came back 8 months after first go-around and now has mets to the bone.  However, lately (within the past month) I've noticed how slow his thinking is and he sometimes comes across to me as confused.  I'm blaming it on the pain meds.  Another time he was very confused, he had dangerously low sodium and had to be hospitalized until the levels were brought back up.  Can you reiterate your experience with me?  Thank you.

It goes way past my experience.  Google whole brain radiation, whole brain irradiation, combine them with dementia, cognitive impairment.  I didn't know what was going on.  He had one episode with extreme confusion, he had asked me to make an appointment at a tire place for a new tire, because he didn't want to go to the OTHER place. The place where I had ordered the tire called to ask where my husband was.  He had gone to the OTHER place.

There are lots of problems with memory & comprehension.  My husband is only 55. Big financial diffiiculties, typical of Alzheimer's.  Irritability. 

Most always the sclc ends up eventually going to the brain.  After 5 years, he was declared cured, but I had no idea what lay ahead. 

As far as the memory goes, they are in "denial" (there's a technical term for it, which means, they are unaware of their limitation.)

I need to find a way not to have this site contact me by email.  I didn't check the box to receive emails, but they have popped up anyhow.

Very sorry to hear about your husband. 

oneGaia,

Thanks for sharing.  I will not send a private email!  So, if I understand, it was about 4 years after his radiation you began noticing symptoms.  Do you remember the dosages of WBR, how many days his treatment lasted?

I feel for you.  You must be a wonderful spose and I am sure your husband appreciated all you do for him.  It must be frightening for the both of you.  Best of everything to you.

Paul

It's funny, like in Alzheimer's, in retrospect you come to understand that some of the much earlier behavior/thinking was due to the beginning of things. Some things "out of character" for the individual.  For example, my husband & I took a trip to FL because I wanted to swim with the dolphins. It was great!  Then we drove to Key West, not much to do in the day time, so I really, really wanted to go into a butterfly exhibit, which also had exotic birds. Now the tickets were only $3. My husband said he did not want to go in, he would wait for me.  (What??)  He said we had seen butterflies on our honeymoon.  I told him yes, & it was fun!  Nope, wouldn't go in with me.  I said, well, I want to see it, & sharing it is half the fun.  Nope.  At the time, I thought he was being an as*, but now, after learning so much from the Alzheimer's spouse support message board, I see the early symptoms of the dementia.

I didn't speak to him all the way back from Key West to Miami.  Then he got the departure time mixed up at the airport.  I trusted him to tell me when the plane was leaving. Wrong!  We had to sit in the airport for 6 hours waiting for the next available flight.

Trust me, I saw him through the cancer & it was tough.  I remember when we got the diagnosis, and we both cried.  Neither of us had seen the other cry.  But I am no great spouse when it comes to this.  I found out through the other site that Medicaid will take my rental property which was purchased before marriage, which would in every state be seen as "separate" property. But not when it comes to Medicaid & long term care.  So, I will actually have to divorce him at some point to keep the only asset I have worked so hard for. 

What upsets me is that none of the doctors, especially the radiologist, prepared me for all of this.  The spouse should know the expected outcome of WBR.

Sorry, didn't really answer your question.  I was never informed about the amount of radiation, and it's been so long ago, I can't remember the number of times he went.

He is not in the least bit frightened, because he is in denial, which most of them are.  In other words, he doesn't realize that he is any different than he has always been.  I am the only one frightened.  He blew our entire retirement savings on the stock market. I had to wake up one day & find out all the money was gone & he wanted to put our home on the market. I could go on & on, but believe me, I am not the saint I was when it came to the cancer.  It has been grueling dealing with the dementia and all the ramifications.