Stage IV nsclc recurring hydrocephalus - 1264840

squash2j
Posts:11

After a frustrating 6 weeks of trying to figure out what was causing the fairly sudden fatigue (extreme!) headache, sudden vomiting (with little warning and no nausea), and "tinnitus" in her ears, hydrocephalus was finally diagnosed about 2 weeks ago. She was admitted to the hospital and lumbar puncture was done once her inr was at an acceptable level. Opening pressure 25/26. Nearly immediate relief of most symptoms after removal of some csf. Lab results stated "not particularly cellular but contains few atypical cells suspicious for malignancy". No meningeal enhancement on contrast MRI done 2 weeks ago or done yesterday (7/9). Lp repeated to obtain another sample (results of that test were same as the first--"few atypical cells...") 4 days after the first (opening pressure 12-13). She was dismissed from the hospital on 7/3 in pretty good condition. Began to see changes in gait and steadiness on Saturday. Vomiting returned on Sunday night and she had a fall (despite using a walker) overnight that night. By Monday she was very confused (repeating questions over and over, etc) and she became too weak to walk so we began using a wheelchair. Lumbar puncture was repeated again (opening pressure 27-28) on 7/9 as well as MRI. Relief of some symptoms again with lp (vomiting and h/a are gone) but she is still repeating questions and becomes quite dizzy with very little movement. She was admitted (at family request) to the hospital where we await the arrival of her neurosurgeon to discuss possible shunt. Oncologist is highly suspicious of leptomeningeal carcinomatosis but cannot get tests to show anything. At this point we are willing to risk the shunt spreading POSSIBLE cells contained in the csf because we can't allow this misery to continue for her. She does not seem interested in cranialspinal radiation at this point and it doesn't seem the doctors are willing to do it anyway unless they have a CLEAR test result. Is there anything else we should be doing?

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Reply # - July 10, 2014, 06:55 AM

squash2j
Posts: 11

I cannot get my signature to save so here it is:

My mother in law 64 (former 1pk per WEEK smoker. Quit early 90's) stage IV Adenocarcinoma with mets to pelvis, femur, left ribs. Upon diagnosis (sept 2012) had recurrent malignant pleural effusion. Pleur-x catheter for about 6 mos then no more pleural effusion! Pleur-x catheter removed. Carbo/Alimta resulting in 50% primary tumor shrinkage initially then stable scans. Maintenance Alimta x 30 rounds.

Reply # - July 10, 2014, 07:03 AM

squash2j
Posts: 11

Sorry. I should also add that recently (when her symptoms were thought to possibly be related to her body saying "enough" to the chemo) Tarceva was looked at but the proteins or markers (sorry--I don't remember) on her tumor made the Tarceva not a good option.

Reply # - July 10, 2014, 09:11 AM

JimC
Posts: 2753

Hello,

Welcome to GRACE. I'm sorry to hear about the symptoms your mother in law is facing. It seems like a difficult situation to diagnose. As Dr. West has said:

"While leptomeningeal carcinomatosis can do anything and come on quickly, I wouldn’t expect it to get very bad, improve dramatically, and get better again. Still, it’s on the list of possibilities.

Normal pressure hydrocephalus is more associated with a triad of confusion/dementia, gait unsteadiness (poor balance), and urinary incontinence. It is also typically characterized by a relatively subtle, gradual onset." - http://cancergrace.org/cancer-treatments/topic/extreme-nausea-from-ster…

As far as Tarceva, a regimen of "pulsed" Tarceva has been tried with some success in treating LMC, but the response is most likely in patients with activating EGFR mutations. If her cancer cells have been genetically tested and no such mutation has been found, it is not likely that she would respond to pulsed Tarceva.

JimC
Forum moderator

Reply # - July 10, 2014, 06:22 PM

Dr West
Posts: 4735

I don't really have much to add. I think there's little to lose by doing a palliative shunt in order to relieve symptoms. The main point I'd make about LMC is that it's notoriously difficult to pin down a firm diagnosis, even when it's actually present, but craniospinal radiation isn't a treatment that is associated with any consistent benefit, so I wouldn't fret about missing out on a terrific treatment option. Many and perhaps even most experts favor a transition to focusing on symptom management rather than frantically pursuing interventions for LMC that have tended to be disappointing when LMC develops in lung cancer, with the main exception being that we sometimes see more convincing hints of benefit in patients with an EGFR mutation who receive pulsed Tarceva for LMC if they develop this complication.

Good luck.

-Dr. West

Reply # - July 11, 2014, 11:35 AM

squash2j
Posts: 11

Thank you each for your responses. Unfortunately today the cytology came back positive on her csf. She has an official diagnosis of LMC and we are heartbroken. She has chosen (and we support her) to not do any radiation. We will have the shunt placed mid week next week unless her symptoms return sooner.

While these have been my first posts here, I have gained so much information from this site over the past (nearly) two years--both from the experts and the patients and caregivers. Thank you for that.

Reply # - July 11, 2014, 02:50 PM

catdander
Posts:

squash2j, I'm so sorry the final dx is LMC. Please know we are still here if you have questions about support and symptom management. I know you've not ask and hope I'm not overstepping but will the next step be hospice care? I understand hospice makes such a big difference for people needing symptom management even in helping caregivers with managing and knowing what to do.

Keeping you and your family in my thoughts,
Janine

Reply # - July 11, 2014, 08:00 PM

squash2j
Posts: 11

You are not overstepping at all--thank you for asking. The social worker at our oncology office is calling Monday to help us initiate hospice. A question that I intend to ask her but I'll also ask here: She doesn't have to be "home bound" to be on hospice, does she? No big trips in our future but while she is still feeling okay she'd like to have some afternoons of fishing with her grandsons (my boys, ages 12, 8 & 4). She will still be free to do those things, right?

Reply # - July 11, 2014, 09:31 PM

bobradinsky
Posts: 144

Squash2j

I'm so sorry your mother-in-law was diagnosed with LMC. My wife, Beth, was also 64 when she was diagnosed with adenocarcinoma with mets to multiple bones, liver, and brain in Sept '12. I think it was June or July '13 when they found LMC. I know how crushing this diagnosis is. I would encourage her to take advantage of every good day and do what activities she feel OK with. LMC moves at it's own pace; in my wife's case it was rather quick. If there is anything I can do to help with symptom recognition I would be happy to help. I too believe hospice is a good choice at this point. May God bless your entire family as you deal with this terrible disease. Bob

Reply # - July 11, 2014, 10:19 PM

catdander
Posts:

Yes, absolutely! I hope your mom goes fishing and plans and does much to please her. There was a time in D's, my husband's cancer experience that I needed to understand the hospice way and found Grace to have wonderful conversations about it. My sister, a nurse 45 yrs and mom taught me an awful lot about caretaking and as you can guess Grace adds to my life's understanding in immeasurable ways. We have a member now on hospice, Debra/double trouble. She went into hospice so we don't hear a lot from her later, she's gotten busy with living life since going on hospice and not suffering over treatment decisions not to mention tx. She has a thread she uses for her decision making questions and she checks in with follow up, her last few pages speak about her situation including planning and taking in hospice. Her experience may be of help. This is as good a place as any to start from, http://cancergrace.org/topic/new-new-plan/page/24/#post-1258864

There are several blog posts including most from hospice specialists and many forum threads on the subject so let us know if you want and need help finding anything. I haven't read them in a while but I think these are a good start:
http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fac…
http://cancergrace.org/cancer-treatments/2010/07/30/is-palliative-care-…

It sounds like the best of ideas and very glad your mom is looking forward to some fishing time. I think there might be some river and road time in my future as well.

Here's to hope,
Janine

Hi Bob, I hope you're alright and have some really good moments. and Thanks much for the input. Hugs,

Reply # - July 11, 2014, 11:06 PM

Dr West
Posts: 4735

I'm very sorry to hear about her diagnosis. Hospice is likely to be very helpful, and it is almost always liberally offered to help people live as well as possible for as long as possible. I hope your mother-in-law is able to be comfortable and that she and your family feel supported.

Good luck.

-Dr. West

Reply # - July 22, 2014, 05:04 AM

squash2j
Posts: 11

Just an update. My MIL had a ventricular peritoneal shunt placed this past Friday. It was purely a palliative move as her pressure (and symptoms) returned so fast. We are hopeful this keeps her more comfortable for longer. We waited to start hospice until after that procedure so we could be certain insurance would cover it (we have met with them). There has seemed to be some pretty big denial on my MIL's part (very understandable) about what is happening. She was overheard telling a friend on the phone yesterday that the doctor had told her she "has 24 to 36 months". Since her initial diagnosis she has been quite adept at the denial and I believe it served her very well and has kept her with us much longer than she might have otherwise been.

She did get a certain amount of relief after the shunt placement, which we are thankful for. It hasn't yet given us any TRULY "good" days yet (remember the fishing outing we talked about above?). She is still suffering from a headache, occasional vomiting, etc.

I wonder if this is, simply, as good as it gets?

Also--her doctor told her that folks w this diagnosis have an average life expectancy of 3-6 mos. Is that from diagnosis or is that from onset of symptoms (she's been having symptoms since May)? Many things I am reading have stated that untreated LMC patients are more in the 4-6 week range of survival. While I certainly realize everyone is a bit different and I know it's important not to get hung up on numbers, I very much feel that knowledge is power and it's helpful (for me, at least) to feel like I have an idea about what to expect.

I appreciate any insight that anyone might be able to provide.

Reply # - July 22, 2014, 08:51 AM

JimC
Posts: 2753

Hi squash2j,

I'm glad to hear that the shunt appears to have helped with your MIL's symptoms.

As you realize, every patient is different. Typically, survival is calculated from the date of diagnosis, and that can add some variability to survival statistics, since some patients are not diagnosed until after their cancer is well advanced.

Here on GRACE we have had examples of patients with LMC who have survived for several months after diagnosis, while others have been more in line with the 3-6 weeks you mentioned. In each case there may have been treatment, but often such treatment is not effective so it's difficult to say whether it improved survival.

In my wife's case, she began to show symptoms a few months before she passed, but she also had extensive recurrence of her brain mets, making it difficult to judge the source of her symptoms. Despite pulsed Tarceva, she was more in the range of 6 weeks.

I am truly sorry your families are dealing with this. My heart goes out to you with the hope that you can have as many moments of joy and comfort as possible.

JimC
Forum moderator

Reply # - July 22, 2014, 11:56 AM

Dr West
Posts: 4735

I don't have much to add here. I'm relieved that she's doing better, and I suspect she will still have some days that are better than others, but it may not get a lot better.

As for the time line, it's quite variable, as you and Jim both noted. LMC can have a ferocious progression over weeks, but it can definitely be more indolent in other people and extend over many months. I hope she has many good days in whatever time she has.

-Dr. West

Reply # - July 23, 2014, 08:32 PM

squash2j
Posts: 11

Thank you both for your responses. Today was a good day. She and I were able to sit outside and watch the boys playing outside. The 4 year old even brought her a toad to hold! :)

Reply # - August 27, 2014, 10:45 PM

squash2j
Posts: 11

Just checking in here. My mil is hanging in. She is still at home and, as long as someone (mainly my husband or myself) is able to lay eyes on her every day, she is doing okay.

She sleeps most of the day every day but we try to break up the monotony as much as we can for her. When we were first making the "plan" for her to be at home, we thought she could come to our house one day a week--to hang with the kids and have a change of scenery. Last Wednesday, I brought her to our house. I anticipated that the 4 steps that must be climbed would be slow-going as she is kind of weak. What I (and she) wasn't prepared for was that she no longer knew HOW to climb stairs. That really seemed to take the wind out of our sails that day.

Since then she can no longer get up from a sitting position (lift recliners are wonderful things). Once she is up she does pretty well getting around her house with her walker. She has developed mouth sores which has made nutrition a little more challenging. Not only does she not have much of an appetite, now when she does feel like eating, it sometimes hurts. :( Hospice has prescribed a mouthwash that has lidocaine to help with the discomfort. She continues to have very poor short term memory and seems easily confused. She recently has been putting things in strange places (put one of her medicine bottles in a drawer with hot pads, etc.). When I went to her house on Monday to look in on her and visit with her, I discovered some pretty nasty pitting edema in her feet and ankles (a new development). She was already on 40 mg lasix daily. Hospice has now doubled that and it has helped. I feel as though we are starting to turn an unwelcome corner. Can anyone offer any thoughts on where we seem to be in this process? Hospice did talk to us about the edema being a likely sign of progression. She has no shortness of breath and is still on room air.

Reply # - August 27, 2014, 10:51 PM

squash2j
Posts: 11

On a more positive note:

My husband (her son) has recently been fixing up/working on a 1964 Lincoln Continental Convertible that belonged to his grandfather (her dad). He has it running and looking pretty nice and the other night he convinced his mom to go on a short cruise with him (and we really had to work on her to get her to agree to go!). They ended up having a wonderful time and were gone for HOURS and put over 200 miles on the car! She loved every minute. He took her anywhere she requested. She says the part she liked the best was going to a little park that she and her late husband used to camp at with our kids. She didn't think she would ever see it again. They were blessed with perfect weather for cruising in the convertible. My husband was all smiles when he got home and I know he will remember that "cruise" for the rest of his life.

Reply # - August 28, 2014, 08:51 AM

JimC
Posts: 2753

squash2j,

As I said in my previous post in this thread, it is very difficult to state a timeline or judge where a particular person is on that timeline. That being said, spending more time sleeping and losing interest in food and activity are common signs that the end is nearing. Your MIL still seems to be a bit active; when my wife was close to the end, she was sleeping most of the time and not interested in doing much of anything. Riding in the car was not enjoyable for her, and she couldn't be left alone for fear of falls. So although your MIL is sleeping a lot, there are other signs that she is (as you say) hanging in.

I can empathize with you regarding the stairs. When I brought my wife home from her first hospital stay in the palliative care unit, we faced the task of climbing a few stairs into our house, and I don't really remember how we finally managed to do it. Later, when we were returning to the hospital for a doctor visit which led to her admission for her second and final palliative care stay, we actually practiced going up and down the back stairs the day before.

I'm glad that she (and your husband) were able to enjoy riding in the car. At this point, it is those moments which must be cherished, knowing that they may become shorter and less frequent. Do whatever will provide a bit of enjoyment for her and you...talk with her, sing to and with her, look at old family pictures together.

Please know that I and other GRACE members are keeping your family in our thoughts.

JimC
Forum moderator

Reply # - August 28, 2014, 08:55 PM

Dr West
Posts: 4735

Thank you for the news and the heartening report of her joy ride.

I agree that the increased sleep and low energy are signs that the end may be within weeks. Edema can be caused by many, many things, but in this setting, it's likely a general sign of shut down. People who are quite sick, from any of a number of things, tend to get very leaky blood vessels that lead to "dependent edema" -- fluid collecting wherever gravity pools it.

I wish we could offer more than our thoughts and our sympathy for the struggles she and your family are facing.

-Dr. West

Reply # - October 4, 2014, 10:48 PM

squash2j
Posts: 11

I am heartbroken to report that my sweet mother in law died on September 25th. My husband, his sister and myself were with her at the time. She had progressed quite rapidly since my last post to spending all her time in a hospital bed. She became very weak very quickly. And it wasn't long after my last post that she began needing round the clock care. LMC is a cruel, crappy disease. This Monday will come and my husband will go back to work for the first time and our kids will go to school and preschool and I'll be left without a Lorie to take care of. I feel like I'm in a sad fog. :(. Am I allowed to put links in these posts? I'd love to share her obituary so you all can glimpse what a wonderful woman she was.

For anyone who might be coming across this post after a search, I would very much encourage initiating hospice early on if you or someone you love has received a similar diagnosis. Hospice was such a blessing. Lorie was quite hesitant at first but our hospice nurse was an angel and a perfect match for Lorie. Starting hospice while she was still reasonably independent gave Lorie (and us) a chance to warm up to the hospice staff so by the time we really NEEDED them we were completely comfortable with them. Our nurse laughed and cried right along with us. Please--don't hesitate. You won't regret it.

Reply # - October 5, 2014, 09:51 AM

JimC
Posts: 2753

Having experienced LMC first hand, I am saddened to hear of your loss and the suffering of your mother in law and family. By all means post a link to her obituary so that we can better know the person that she was and continues to be in your hearts.

JimC
Forum moderator

Reply # - October 5, 2014, 06:52 PM

Dr West
Posts: 4735

I also want to express my condolences, along with thanks for a helpful reminder to people traveling down the same road that hospice isn't something to resist but can be very helpful in navigatiing that bumpy road.

-Dr. West

Reply # - October 5, 2014, 08:39 PM

bobradinsky
Posts: 144

My sincerest condolences to you and your family on the loss on your dear mother-in-law. I also know how devastating LMC can be having gone thru it with my wife Beth in 2013. I also agree that hospice is the best place to be once LMC is diagnosed because the symptoms become so very difficult to manage. I hope you find solace in knowing she is no longer suffering and wish you and the rest of your family peace in the coming days, months and years.

Bob

Reply # - October 6, 2014, 01:17 PM

catdander
Posts:

I'm very sorry for Lorie's passing. I know you feel the loss heavily. I look forward to you posting her obituary so we can learn more about this person. I know the moments such as to long ride in the convertible and the toad have and will give comfort.
Your words about hospice to others who will read your post are much appreciated.

My sincere condolences,
Janine

Reply # - October 13, 2014, 10:07 AM

catdander
Posts:

She sounds and looks so very sweet. I know she'll be missed my many. Give a few hugs around for me for her for you.

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