Leptomeningeal Carcinomatosis--no pain? - 1248525

noelle54
Posts:7

My father's MRI scan back in February 2012 showed brain mets from his NSCLC and signs of leptomeningeal disease. He had a few symptoms at the time. Uneasy gait, dizziness, headaches, some facial palsy, and speech change. Since then he underwent WBR, Alimta for his lung cancer, and Temodar for the brain mets. His recent MRI showed that the brain mets and meningeal disease disappeared, however, almost that same week he began to rapidly decline to the point where he could not walk. At the hospital he was diagnosed with cancer cells in the spinal fluid. His doctor thought there would be no harm in trying the pulsed Tarceva, even though he is EGFR negative. It had still shown some clinical efficacy and we decided that's the way we would go.

He has been home now for about a week and he is visibly declining. He has massive amounts of mucous in his throat, he sleeps constantly, he isn't talking as well as before, his facial palsy has worsened to the point where he cannot smile anymore, he needs assistance for EVERYTHING. (We have a home health care aid, physical therapist, occupational therapist, speech therapist, and nurses visit 2X per week.)

Here's the thing...with all of these awful symptoms and with him declining as rapidly as it seems (he was still working part-time as a barber until 3 weeks ago), he has NO PAIN at all. I guess I was just wondering if anyone has had experience with this disease and not experienced any pain? Or is it just a matter of time?

Also, how long should we try the pulsed Tarceva for...when are improvements seen if they are going to be seen?

Thank you so much in advance.
Heather

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Reply # - October 1, 2012, 11:06 AM

catdander
Posts:

Hello Heather,

I'm so sorry your father and family are going through this. I can't ansswer your question about tarceva so will forward it to a doctor.
Have you spoken to the oncologist about bringing in hospice? I understand they are very very helpful at helping everyone through this process. Maybe a call to the cancer center can help facilitate it. Here is a post on the subject of bringing hospice in sooner than later. http://cancergrace.org/cancer-treatments/tag/hospice/

I'm glad your dad isn't in any pain. Pain isn't necessarily a part of the dying process. Here is a FAQ post entitled "What might I expect to happen when someone I’m caring for is dying?"
http://cancergrace.org/cancer-treatments/2011/05/06/faq-dying-process/

I hope this helps, I can only imagine the distress your family is going though. I hope your dad is fairs ok.

You should hear back within a day.

Janine
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Reply # - October 1, 2012, 01:54 PM

dbrock
Posts: 162

Operations Director, GRACE

 

Hi Heather,
What you are describing sounds pretty similar in ways to what path Melissa took. Her Leptomeningeal Carcinomatosis reacted somewhat the same. With her I didn't see any real pain, physically. Much fear, lots of mucus, and it got to the point that she could not eat, more than that she could not swallow. Which brought about other problems, obviously. It almost seemed like the cancer cells would float and land, and when they did, it caused odd symptoms: random throwing up, stroke like symptoms (unable to speak, facial issues, etc.). But it would clear, strangely enough, somewhat.... It was almost like a two step forward (but here forward means toward more symptoms) one step back process. She was on pulsed tarceva for awhile. (My memory fails me here, on how long she was on it...much of this time is blurry... )... Matter of fact we took a 2 week boat trip right before she was admitted to the hospital, and really she was admitted because they were going to try to get a feeding tube in her because she couldn't eat.

She didn't really experience physical pain until the end, and I think that had more to do with no nutrients, hospitalization, and general decline.

Best regards, and so sorry you are going through this.
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 1, 2012, 04:19 PM

Dr Laskin
Posts: 34

Hi Heather

I'm sorry to hear about your dad.

Leptomeningeal metastases are very hard to treat, most of the time radiation and chemotherapy doesn't help very much, though it sounds like he did pretty well until just recently. It is common for nerves to be "picked off" by small deposits of cancer, often not visible on CT or MRI but detectable floating around in the spinal fluid.

I agree it was worth trying it, but at this point i would say that it is unlikely further Tarceva will make much difference, even if it slows down the rate of getting new nerve damage it won't help fix the nerves that are already affected. Usually we would try it for 3 or 4 weeks before saying that it is not going to help, on the other hand, this should all be about his quality of life and trying to take pills when it's difficult to swallow is not usually a positive experience.

i would be inclined to engage whatever hospice services are in your area and stop the Tarceva. it's time to spend the rest of his time being his family and not struggling to provide all the nursing care as well.

Pain is not usually a part of leptomeningeal disease, thankfully. most people sleep a lot, and gradually lose more nerve functions - exactly as you are seeing. swallowing and speaking become increasingly difficult as the nerves that move the tongue around are frequently affected. I don't think you have to anticipate pain in his future.

Best of luck

Reply # - October 1, 2012, 04:25 PM

noelle54
Posts: 7

I'm so sorry for your loss...can't tell you how much this cancer thing tests my beliefs. How long was it for Melissa from when the pain began to when she passed on? I hope not long at all.
The LC takes so many twists and turns... Roller coaster to say the least. On top of that Dad has side effects from the WBR... Dry eyes, dry mouth, terrible taste in mouth, etc...

Janine, I have Hospice on speed dial when the time comes. I know it may be soon... The nurses who gone to our house have spoken to me about it. I guess bc he wants to try all possible paths we will give the pulsed tarceva a shot for a couple more weeks. If he gets any worse before then we will call hospice in...

Thank you both so much for your responses and concern. You are earth angels!

Reply # - October 1, 2012, 05:18 PM

JimC
Posts: 2753

Hi Heather,

I'm so sorry to hear of your Dad's LC. From my experience with my wife's LC last year, I found that she probably did not have pain from the LC. She was on pain meds, but this was to control pain from her many bone mets and progressing liver mets. The LC made her movements impossible without a great deal of assistance, and she began sleeping more and more, until most of her days were spent asleep. She tried pulsed Tarceva (and she had an activating EGFR mutation and had responded well to Tarceva previously), but it didn't seem to slow the LC down.

My advice would be to contact hospice right away, if only to get connected with them and perhaps hear any suggestions they may have to help make you Dad as comfortable as possible. I hope that his remaining time is peaceful, both for him and for all of your family.

JimC
Forum moderator

Reply # - October 2, 2012, 09:58 AM

dbrock
Posts: 162

Operations Director, GRACE

 

Hi again Heather -
I really wouldn't say there was pain - perhaps uncomfortableness. The worst I saw was because she was wasting away due to the fact that she couldn't eat. We took her home briefly, but it clearly didn't work and we took her right back to the hospital. She could barely sit in the car, so I equate that with pain. But it really was just that she was failing and had no strength. When we readmitted her they administered a painkiller but really I think it was just to make her more comfortable in general. As hard as it was to admit, it was the beginning of the end - and the goal was simply to keep her comfortable. As for your question of how long - we were on the boat July 5 - 14th (?) she was in the hospital shortly after we returned, and she passed on July 31. It felt like forever.

I wholeheartedly agree with Dr. Laskin, above - now is the time to be family. I spent every day at the hospital. Our friends and family rallied around us and picked up the kids, got them to camp, dropped them off, etc. The closest of us (her husband, her parents, friends) stayed in the room and told stories, laughed, cried, held her hand.... I am glad we did. Though if I could change anything of course it would never have happened, but it did, and looking back - I feel like that we spent those last weeks with her as we did was so important. It is a time to just be with your dad.

I hope you also had a chance to read Dr. West's post that Janine references above. It truly is a good and spot-on discussion of the subject.

Best of luck to you.
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 2, 2012, 11:58 AM

noelle54
Posts: 7

Thank you all...and I'm so sorry for your losses. He is at our home and we are there with him when we are not at work. With all of the help we have been receiving from healthcare providers, we have been able to just be his family. He has us and also friends visiting all of the time surrounding him and offering him comfort. He is not in any pain, and I am happy to learn from many of you that there may not be any... Melissa passed so quickly...but really it must have seemed like an eternity...

I spoke with my brother today and we are in agreement that we will be contacting hospice tomorrow. It's the most difficult thing we've ever had to do...and even though he's not in pain and he is comfortable, if we can do this now to make it even easier or better for him (and us) that's what we'll do.

I got a chance to read all of the posts regarding hospice and such. It seems like a slap in the face hearing from others that it's time to let your loved ones die...and I have to tell you I of course hated reading it, but oddly it makes sense.

Reply # - October 2, 2012, 03:23 PM

Dr Laskin
Posts: 34

Heather - please keep in mind that going into hospice does not mean your family and friends are not capable of looking after your dad, it sounds like you're doing a great job.
This is not a failure on anyone's part. Hospice means that you don't have to worry about the day to day details of nursing care, making sure someone is always there, making sure he doesn't fall going to the bathroom, keeping track of his bowel movments and so on. Once that worry and those tasks are removed it gives you more time and freedom to just be with him for whatever time you have left together.

Reply # - October 2, 2012, 06:06 PM

dbrock
Posts: 162

Operations Director, GRACE

 

I am so sorry - I know how hard it is to read these things. Please know they are said with caring intentions, and I do know that it feels like a slap in the face. It is not meant to.

This is a very hard thing.
Denise

Operations Director for GRACE. Have worked with cancerGRACE.org since July 2009.  Became involved as a caregiver to my best friend, and quickly came to see that GRACE is filling a need in the area of cancer education. 

Reply # - October 2, 2012, 06:26 PM

noelle54
Posts: 7

Dr. Laskin, thank you for your kind words and responses. They are very informative and it means so much that you take the time to help others jn need. I guess what I meant to say was that he is getting all of the care now that he needs. I haven't had to do anything except be with him. We have a home health care aid living here 24/7. We also have occupational therapist, speech therapist, physical therapist, and nurses coming every other day. They are all doing a beautiful job making sure he's comfortable and eating and doing well. I feel like hospice wouldn't be that much different. I asked the nurse today and she said the only difference with hospice would be that we would have a social worker and the chaplain to further help us through this process, plus we would have certain medications as well.

His PT told me today he did better than last week. And his speech therapist says he is swallowing fine for now. I'm calling the doctor tomorrow to discuss hospice care nonetheless.

I know all intentions are good... You are all angels here and your words and advice mean so much!! Thank you, thank you, thank you!!!

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