Downhill Fast

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September 29, 2014 at 10:45 am  #1266185    

superconcerned

Over 3 years ago my father was diagnosed with Stage IV Adenocarcinoma with mets in the brain. He had radiation to the chest and chemo simultaneously. He received 3 treatments of brain radiation too (we call it GammaKnife). About a year later he had WBR on 3 new mets to the brain. His vision and memory were affected. 6 months later he was still having issues with vision, memory, and balance. His onc told us that they were unsure of the lasting side effects from WBR because most people don’t live very long afterwards and that the WBR was most likely to blame because the new mets were stable. Fast forward 6 months and a couple of new spots were found in the chest. Radiated the whole chest and now those are stable too at 3 months out. We had scans about 3 weeks ago and the lesions in the brain and lungs are stable.

In the last 3 weeks, he’s progressively gotten worse. He can no longer dress himself, bathe himself, or make it to the bathroom on time or on his own. His cancer has been EXTREMELY slow growing this whole time because none of them have been over a couple of cm each, none have grown to cause actual pain, no swelling on the brain, etc. Can slow growing cancer suddenly become fast growing cancer?

I always assumed that because his cancer was so slow growing his decline would also be a slow decline. He’s so depressed that I often wonder if this decline is actually him giving up.

Any help, blog articles, or things to watch for would be greatly appreciated. Thanks for all of your help throughout the years. You helped me with my MIL who had SCLC and died within 9 months of diagnosis. I’ve found in the last 4 years that SCLC and NSCLC are two different beasts.

Windy

September 29, 2014 at 6:03 pm  #1266207    
JimC Forum Moderator
JimC Forum Moderator

Hi WIndy,

I’m sorry to hear of your father’s symptoms. It is certainly possible that it could be related to his WBR treatments, especially since his cancer appears to be stable. Usually even an aggressive cancer does not cause such a rapid decline after appearing so minimally on scans so recently, but as Dr. West has often said “cancer can do anything”. Here is a discussion of the side effects of WBR: http://cancergrace.org/radiation/2010/09/13/radiation-faq-what-side-effects-can-i-expect-from-whole-brain-radiation-wbrprophylactic-cranial-irradiation/

If your father is experiencing a wide range of neurological impairments, it is also possible that the cancer has metastasized to his cerebrospinal fluid, a condition know as leptomeningeal carcinomatosis, which you can learn about here: http://cancergrace.org/lung/2014/09/05/iaslc_riess_treating_leptomeningeal_carcinomatosis/ I mention it because LMC can progress very rapidly.

My thoughts are with you and your family. I am so sorry that lung cancer has taken such a toll on your family over the years.

JimC
Forum moderator


Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

September 29, 2014 at 6:24 pm  #1266209    

superconcerned

Jim, in the last 4 years I’ve lost my MIL, her mom, and my paternal grandmother to cancer. MIL and my grandmother to SCLC and Adenocarcinoma. My husband’s grandmother lived 4 months after her diagnosis of mesothelioma of the abdomen. My kids are shell shocked from cancer.

What I would consider the original symptoms of the WBR came about 6 months after the treatment and then were gone within 3 months or so and he seemed to improve with his balance and memory. His WBR was done almost a year ago. The decline I’m referring to has happened even more quickly and more paralyzing than those after WBR.

When my MIL was diagnosed, she didn’t have a spouse or any daughters, just sons (of which 2 weren’t even in their 30’s) so I took it upon myself to try and learn everything I could about SCLC. She died so quickly and had so many issues with her cancer that when my dad got diagnosed with Adeno, I refused to research anything, instead I just compared her struggle with his. Well, he outlived his life expectancy and has continued to do so. Not many people with Stage IV lung cancer have chemo only once and are still alive.

I don’t really know what to ask or what to do. This last week has been horrible to see him go down so quickly. I was looking for a general decline spanning weeks or months. Up until this week he’s been able to walk to the bathroom and bathe and dress himself. He can’t even do that now.

I’ll read the posts you suggested Jim. Thank you so much for your help and for your kindness.

September 29, 2014 at 9:05 pm  #1266212    

bob4beth

Windy

It is true that metastatic NSCLC has a mind of it’s own and can go from being indolent to very aggressive over a very short time. I agree with Jim that the symptoms your dad currently presents could possible indicate a progression to Leptomengenial disease or LMC. One of the first symptoms my wife experienced were headaches, change in gait (difficulty walking) and incontinence along with memory loss and difficulty with speech following soon. The only good diagnostic tool is a spinal puncture and even then it does not always show up with a single test. May I suggest getting a bedside commode. It saves a great deal of time over trying to help your loved one to and from the bathroom.

In any case I know how difficult being a caregiver can be when cancer turns aggressive. Get yourself some help so you can get a break. You will need maximum strength to get both your dad and yourself through this. I certainly hope it is not LMC and he can get his symptoms under control. Sometimes a trip to the hospital to get fluids helps a lot to relieve symptoms. I wish you and your family better days ahead.

Bob


Sept 2012 my wife Beth was, 64 year old non-smoker dx stage 4 Adinocarcinoma NSCLC EGFR + with mets to liver, bones and brain. Sept 2012 operation to replace right hip damaged by bone met. Sept 2012 5 DVT found in legs. Started Lovinox. Oct 2012 started Tarceva 150 mg per day. January 2013 surgery to stabilize right femur followed by 10 radiation treatments. April 2013 radiation treatments to left femur. May 2013 dx LMD. Started pulse dosing Tarceva 1,500 mg/wk. Sept 2013 we lost Beth.

September 29, 2014 at 9:41 pm  #1266219    
Dr West
Dr West

Windy,

I’m sorry you’re facing this in your dad after being so touched with cancer in so many family members. You would be right to want to have far less experience with it.

My leading suspicions would be either of two things. First, it may be the leptomeningeal spread that Jim and Bob have already alluded to. Leptomeningeal carcinomatosis is notorious for leading to some of the fastest declines we ever see in lung cancer. It can sometimes be detected on a brain MRI, sometimes detected by a lumbar puncture, and sometimes just presumed based on the overall clinical picture, especially one of a collection of new, rapidly progressive neurologic issues that don’t fit together the way the pattern of a stroke does.

The second leading possibility is of “radionecrosis”, basically death of some of the brain tissue a while after WBR. I’ve seen a few patients decline rather impressively 12-24 months or sometimes even longer after WBR, often with new abnormalities seen in the “white matter” of the brain, kind of a structural deterioration as a later conseequence of brain radiation. We see this a little more now that we have more patients living years after WBR, whereas it wasn’t a real concern if patients almost invariably died of lung cancer 4-6 months after developing brain metastases, as was more the case in past years. This would be detected by a brain MRI potentially.

One other possibility would be new brain metastases despite the prior WBR, though unlikely.

The challenge is that there isn’t likely to be an effective intervention, no matter what the cause is, but if it would help to get an answer, I suspect the brain MRI would be the most fruitful initial step.

Good luck.

-Dr. West

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