Mom: Stage IV NSCLC AdenoC Brain Mets, Bone Mets - 1259238

commodore64
Posts:37

About month ago my mom (66) lost sight in her eye. She ended up at a local hospital or ER, got a brain MRI, and the doctor came in and told her she "had 2-4 weeks, would you like a pastor?" She was in excellent health days before, running around the yard with my daughters

She was admitted to the hospital for further diagnosis. I understand it is Stage IV NSCLC with brain mets for sure, one lesion is on the pons. She is not EFGR positive. There are too many lesions to treat with the gamma knife(?), so she immediately had whole brain radiation and started on taxol. She's had a taxol+(something I can't remember) infusions each week for the past 3 weeks and 2 weeks of radiation (10 treatments).

Her eyesight is coming back. She's gained 8lbs in the last 2 weeks (after losing a lot of weight in the first 2).

Next week she will have alimta/carboplat to be continued every 3 weeks, henceforth.

My parents do not want to pursue 2nd opinions, and I am confident in the diagnosis, and the treatment plan seems consistent with others I have read about online. My parents do not want more information, they just want to fight the cancer.

1. Her oncologist I talked to at the hospital, after the cat scan of her body (following after the original brain MRI at the other place) said: A few lymph nodes in the chest, some spots on her pelvis bones looked abnormal--I interpreted this as bone and lymph metastasis--indicating cancer in each critical third of her body--head, thoracic, below the waist. He told us 4-6 months.
2. Upon further review, we got the NSCLC Adenoc. diagnoses, with brain mets. 12 months, 2 years at the very maximum (miracle would be 24 months).

I am on the HIPPA list for her oncologist, so I can get any information released to me. I just do not know what to ask for, or if any of it is of any use for us to know. I want her to see real hope in my eyes, but it's tough. What other information should I ask of her oncologist?

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Reply # - September 13, 2013, 09:00 AM

Dr West
Posts: 4735

One important question is whether she has an ALK rearrangement, since it's a marker with clinical significance -- if the tumor includes an ALK rearrangement, the oral agent XALKORI (crizotinib) is going to be a very appealing treatment option. Otherwise, XALKORI isn't typically used.

Another option to perhaps explore is whether a clinical trial option with a novel therapy might be available and attractive as an alternative to standard off protocol treatment.

Good luck.

-Dr. West

Reply # - September 16, 2013, 11:47 AM

commodore64
Posts: 37

Based on a caregiver meeting last week: There are 12 or more lesions on my mom's brain, a few of which are on the brain stem. Those are the big deal. The feeling is that the other cancers will respond to treatment, and that it is the brain lesions that will kill her and her quality of life will be the main mitigating factor in continuing treatments.

This is a very hard reality, especially because, now, a week since her last radiation, she is becoming stronger and a lot more like her old self. And tolerating chemo very well, too. But of course, chemo doesn't cross the blood/brain barrier.

Waiting for an answer regarding the ALK Rearrangement from her onco. My mom is not open to clinical trials (her wishes). Questions I have:

1. Does XALKORI cross the blood brain barrier at all?
2. Mom's father, and his father, too died of lung cancer (unknown types). Does this cancer appear in a matter of months, or is there something I can do from an early detection standpoint: e.g., periodic chest xrays?
3. Are these cancers hereditary. This is selfish, I know. But I need to know how my sister, myself, and my daughters should proceed from here.

Reply # - September 16, 2013, 01:34 PM

carrigallen
Posts: 194

Re: 1. Sadly, Xalkori is not believed to penetrate into the brain much. For example, in one patient, the level in the brain fluid was only 0.3% (three per 1000) of the level in his blood. Some of the new ALK inhibitors being tested in clinical trials may achieve better brain levels.
Re: 2. There aren't any guidelines to endorse routine screening CT scans in non-smokers. If you have any lung cancer symptoms though, like cough, that could be an indication to get a CT scan done.
Re: 3. Not that I know of. In contrast to some cancers like ovarian cancer or colon cancer, in general the risk of familial lung cancer is very unlikely. It is true that genetic changes in ALK are implicated in several hereditary cancer syndromes. However, I'm not familiar with any involving the EML4-ALK gene usually seen in lung cancer, the gene that we commonly talk about. To get a real answer, it would be best if you took your mom to get a visit with a genetic counselor.

Reply # - October 21, 2013, 01:11 PM

commodore64
Posts: 37

Have some news to share. Had a CT Scan and MRI done in the past week. We had to admit her to hospital for blood clots in her right leg. That was a tough night. She was very down about this. But this seems to be a pretty common side effect. She's on warfarin now, and home.

They did a CT scan for the blood clots, and the report was that the lesions in her lungs are shrinking.

They did an MRI last week. All of the lesions on her brain (except the one in the brainstem) are not showing up/reflecting dye. So I guess that means that the WBRT has done very well.

Because everything else is responding, she is now a candidate for Gamma Knife. She had a consult today. the neurosurgeon reiterated that her response thus far is excellent.

She's tolerating alimta/carboplatin very well. She gets dosed every 3 weeks, has about 3-5 days of not feeling well, with loss of appetite and fatigue being the prime complaints--which we think are quite manageable...we just tell her to sleep and keep her hydrated.

I'm starting to have optimism. She seems to as well. I know this can't last forever, but it good to finally have some good news to think about.

Reply # - January 15, 2014, 10:21 AM

commodore64
Posts: 37

The met on her brain stem seems to have responded well to the gamma knife. Masses in her lungs continue to shrink or be stable.

The doctor has now moved on to treating her bone mets which have spread to her clavicle. So sternum, clavicle, and pelvis. She started 150mg tarceva per day and had an infusion of Aredia 3 weeks ago.

She is in a lot of pain. Severe pain in her legs and back that she describes as deep, powerful, ever present pain. Not sleeping well, most of the time, and going through percocet, which seems to help for a couple hours at a time. Her spirits are noticeably down, and I think she's close to losing the will to live/fight. In fact yesterday I was sure of it. But today, she is riding her exercise bike and in better spirits.

We have an appointment with her oncologist tomorrow. He told my sister and I that his initial prognosis still stands which was 1 year if we are lucky, 2 would be a miracle. I think we may have been too hopeful with her initial response. He told us that they treated the brain first since those lesions were the most dangerous (WBRT), and lungs (taxol/carboplat, then carboplat/alimta), and now we are moving on to the bone. He said her calcium levels were elevated, but I do not have specifics of the reports.

I'm not sure why she is on tarceva, since she is EFGR negative. She and my father seem to think that the severe pain is a side effect of Aredia (or tarceva). I'm thinking it's the bone cancer, so I'm worried that she will go off of the Aredia, and progression will worsen.

Another thing. Since her initial diagnosis she has been on decadron, for the brain swelling. She can't seem to get off it. Not having much luck getting her to taper any further because she just feels so awful without it. She's down to 1mg 2x per day, but I've read that decadron can speed up the progression of bone cancer, so I worry about this too.

Reply # - January 15, 2014, 12:21 PM

JimC
Posts: 2753

commodore64,

I'm sorry about the pain your mom is experiencing. It's not common for tarceva to cause such pain and although many drugs (including aredia) can cause pain (it's listed as a less common side effect for just about any drug), it's much more likely that the bone mets are the cause.

Her oncologist's prioritization of treatment (brain mets first, then lungs, then bone mets) is consistent with the course most doctors would follow, although it should be noted that the chemo she received is systemic treatment which seeks to kill cancer cells throughout the body, including the bones. If chemo is successful, it can prevent or slow progression throughout the body. (It works less well for brain mets due to the blood/brain barrier). Radiation treatment for bone mets is used to prevent fractures and reduce pain.

Although the patients who get the greatest benefit from Tarceva are those with activating EGFR mutations, it can provide a lesser benefit for those without such mutations, and is a fine choice for second- or later-line therapy. There is a GRACE FAQ on this subject here: http://cancergrace.org/lung/2010/09/21/benefit-from-egfr-tki-if-egfr-wt/

JimC
Forum moderator

Reply # - January 15, 2014, 02:18 PM

Dr West
Posts: 4735

I agree that Tarceva is a fine treatment option, and arguably the clear preferred one, for someone who has already received and demonstrated progression on chemotherapy, especially a couple of lines of it. As the link Jim provided describes, Tarceva tends to be minimally to modestly effective for those with EGFR wild type, but it's still an evidence-based option that can improve survival when there aren't really other alternatives that we could say would do better.

I don't think the pamidronate is likely to have a huge effect either way. I think it's perfectly good to do it, and it might retard progression in the bones compared with not being on it, but coming off almost certainly won't lead to any very significant progression either. It could be helpful in counteracting the osteoporosis-accelerating effects of a steroid like decadron as well as helping somewhat against further progression of bone metastases. Otherwise, however, I don't think there's any particularly strong evidence that decadron accelerates progression of bone metastases and would say that if it's needed, it's needed. We don't like people to be on more steroids than are needed for any longer than they're needed, but they can be very helpful for a lot of situations. It's always a balance of helpful vs. harmful or potentially harmful effects of them.

Good luck.

-Dr. West

Reply # - January 15, 2014, 08:23 PM

bobradinsky
Posts: 144

Commodore 64

My wife, Beth, also had lesions in her bones and brain. At one time after surgery to replace her hip she complained of severe pain in her legs just as your mom did. We eventually discovered that she had 5 DVT's (deep vein Thrombosis) which I understand is not uncommon with lung cancer patients. It may be a long shot but you might want your doctor to rule it out.

I feel terrible for what you and your family are going thru. Bob

Reply # - January 16, 2014, 11:08 AM

commodore64
Posts: 37

Pain continues to increase. She had an appointment with her oncologist today. They sent her directly to hospital, with preliminary diagnosis that the cancer has metastasized to spine. Should know more later.

Bob, I think we are on a trajectory that must sound disturbingly similar to yours. I'm so sorry for your loss. And thank you all very much for your comments and support. It must be incredibly tough to do this each and every day.

Reply # - January 16, 2014, 11:23 AM

catdander
Posts:

I hope your mom is being kept comfortable. If not insist more to be done for pain control. Oddly enough there are those who find doing this daily to be of comfort, of which I'm one.
I'm so sorry your young mom and her family are going through this.
Peace and Comfort,
Janine

Reply # - January 16, 2014, 07:06 PM

pepperhead
Posts: 11

Sorry your mom is going through this. I'm with Janine. Maybe your mom should get an appointment with the palliative care team at her treatment facility so they can adequately address the ongoing pain issues. Constant pain and discomfort causes unnecessary anxiety and stress. This is one instance where better living through chemistry is most appropriate.

Oscar

Reply # - January 17, 2014, 08:48 AM

catdander
Posts:

WE is the appropriate pronoun Dr. West. :wink:

Right pepperhead. We usually can get what we need no matter what the title is but you have to know how to ask; for that matter we have to know that there's something to ask. Too many people don't know.

It appears I'll be ranting...Hospitals have different teams who manage pain issues. My husband's group mostly has the oncologist handle the pain, though I know the hospital has a pain management doctor she hasn't been used in his case. They don't have a palliative specialist at all. As I understand it most don't...yet.

There's a blog post here that discusses how palliative care rises longevity and quality of life for people with incurable cancer. The research data was completed just a couple or so years ago and numbers are as good as or better than some of the numbers needed for FDA to approve many new drugs. I'd bet most people reading this didn't know that. Here Dr. Harman reminds us, "Overall, the visits weren’t all about death and dying, a common misconception of palliative care.". The following link as includes links to previous posts on the subject that can be found within the text. http://cancergrace.org/cancer-treatments/2011/10/12/the-black-box-early…

Janine

Reply # - January 17, 2014, 12:45 PM

commodore64
Posts: 37

OK have some info. It's not good. Lumbar and Thoracic MRI results...

Thoracic:
1. Extensive metastatic disease. Sugar coated appearance along entire thoracic length of cord.
2. Midline disc bulge at T7-8
3. Metastatic disease affecting manubrium sternum suspected. Right adrenal mass.

Lumbar:
1. Extensive metastatic disease, sugar coated appearance, numerous small rounded foci on the surface of the cord and along the caudal equine.
2. Focal lesion on lower anterior aspect of the mid to lower part of S2 body, probably metastatic disease
3. Right adrenal mass, suspect metastatic disease
4. Osteoporosis
5. Negative for any significant focal disc protrusion or herniation, spinal stenosis, or foraminal stenosis.negative for cord compression.

Most of that I think I can interpret well enough. Cancer metastasis to her spine and associated CNS, leptomenigeal.

Strictly palliative now. I guess we knew that all along. What I need to know now is how long. I will be planning/organizing the memorial service. Do I have days or weeks? Just gave her a dose of radiation to the lumbar area since the masses seem to be causing nerve pain, weakness. W

The "process" is well along now. She's withdrawing from us mentally. Not eating much. Wanting it to be over. If radiation/meds can't give her 6 months to a year, she doesn't want to do anything...which is understandable. Can anyone give me some straight talk about treatment options at this point?

Reply # - January 17, 2014, 08:17 PM

JimC
Posts: 2753

commodore64,

I am so sorry to hear of these scan results and the direction your mom's cancer is going. My heart goes out to you and your family.

Although the "sugar coating" is characteristic of leptomeningeal disease, as I'm sure you know the only certain way to diagnose it is by testing the cerebrospinal fluid for cancer cells following a spinal tap, and even that can provide a false negative. In my wife's case, a spinal tap was not done but there was a suggestion of LMC on an MRI and her symptoms (unsteady gait, double vision, focal weakness, difficulty swallowing) seemed to confirm it. In your posts you have not described similar symptoms, leaving the LMC diagnosis unclear.

Despite all of her symptoms, my wife survived for about five weeks after the scan and onset of symptoms, so it can be very hard to say just how long the process may take for your mom, even if LMC is present. Those best able to give an estimate would be her doctors, who are most familiar with her scans, history and symptoms, and even they would be guessing.

As far as further treatment, it would be difficult to administer it to a patient who does not want it and is not eating much. I would think a very frank discussion with her doctors would be in order, to see if they recommend it. Lung cancer progressing this rapidly often does not respond to further treatment.

Best wishes for peace and comfort at this very difficult time.

JimC
Forum moderator

Reply # - January 17, 2014, 08:20 PM

Dr West
Posts: 4735

I'm so sorry.

Honestly, as Jim noted, you can say a lot more about seeing the person than hearing a summary or seeing a scan report. As you said, it's an ugly scan report. Between what the scan conveys and what you're telling us, I think a prognosis of days is more likely than weeks, but her doctor or a hospice specialist would be able to say more. As Jim also said, in this situation it's extremely unlikely that further treatment would be feasible or helpful.

Thinking of you.

-Dr. West

Reply # - January 21, 2014, 11:19 AM

commodore64
Posts: 37

She came home two days ago. Her oncologist wanted to do an alimta/carboplat chemo treatment today after her radiation, but they decided she was too weak. I can't imagine another chemo treatment will serve any purpose anyhow. Her onco said to look into "bridge care" and we'll see how she is after the radiation is done (8 more treatments). My father is not being receptive to these ideas because it's basically admitting to her that there is no hope...which will cause her to give up.

She is getting weaker every day. Saying things that don't make sense like "We should wash the walls", and laying there, fidgeting her fingers and hands on the sheets. I'm so scared that this could drag on for months and so ashamed that I hope it will be over quickly.

Reply # - January 21, 2014, 05:04 PM

Dr West
Posts: 4735

I think many people here not only understand exactly why you feel this way but can reassure you that wanting to keep from having her suffering continue too long is NOTHING to be ashamed of. It's very understandable, reasonable, and caring.

There are situations in which we run the risk of prolonging dying rather than prolonging life.

The only real consolation I can otherwise provide is that it sounds like these decisions will likely be made by the disease. If she's declining day by day, she won't suffer for long, and it will be completely infeasible to follow anyone's bad judgment toward further treatment that is unlikely to help.

So sorry. Please know that there are people here who understand.

-Dr. West

Reply # - January 21, 2014, 05:27 PM

JimC
Posts: 2753

commodore64,

When my wife was diagnosed and we had our first meeting with our oncologist, he told us that the goal of care for a stage IV lung cancer patient was to increase the quantity and quality of life. Initially, the main focus would be to try to lengthen life while keeping quality high, but at some point that focus would shift to trying to maintain the best quality of life possible...comfort and freedom from pain.

When the time came to cease treatment for my wife, he reminded us that we were not giving up, that we were making that transition which he had described at the beginning. We simply weren't doing something that was highly unlikely to increase the length of her life but was very likely to make her less comfortable.

My thoughts will be with you and your family at this difficult time.

JimC
Forum moderator

Reply # - January 21, 2014, 08:25 PM

bobradinsky
Posts: 144

Commodore64

I just wanted to offer my prayers for your mom, you and your family. I pray that she does not suffer from pain and discomfort during the final days of her battle with cancer. I wish you all peace in the days, weeks and months to come.

Bob

Reply # - January 23, 2014, 10:35 AM

commodore64
Posts: 37

I will keep this thread updated because I don't really know how this will go or what to expect. So this may serve help to others in the way that all of the threads here have helped me (in addition to the threads I've created). I hope this can also some useful data points for the medical research folks about LCM progression, etc, even though "self-reported" data isn't as robust or reliable in a scientific setting.

She is slowly but progressively losing control/strength of her lower extremities. Surprisingly, they also gave her a Alimta/Carboplatin dose. I guess she wanted to have it and they felt she is healthy enough?

Her onco put in the prescription/recommendation/order that Bridge Care (?) should be sought with hospice to follow. here is a description of said care: http://www.robinsonmemorial.org/main/palliative-care-plus-program.aspx

Onco seems to think insurance would cover bridge care as well as hospice. My dad is very upset that we scheduled a visit from the hospice folks for tomorrow. My dad pretty much intends to "go down with the ship" to keep her from feeling like we're giving up. We seem to be solidly entering the Upheaval phase of this whole process. Dad is not seeing what it is doing to the whole family, we simply cannot care for her (and him 24/7). My sister has been a rock since August. Being there 5 days a week (at least), and still managing keep her academic responsibilities managed at the expense of her research. None of us can continue to miss work, neglect our own family responsibilities etc much longer.

I'm putting a lot of faith and hope in the Hospice/Palliative care folks. I truly hope they can do what we aren't equipped to do, which is prepare/control/help my family navigate this part of this terrible journey.

Reply # - January 23, 2014, 01:41 PM

zemswife
Posts: 13

Commodore64,
I am so sorry to hear what your Mom and family are going through.

When it was recommended that my Mom enter hospice, I had a meeting with them before they talked to my Mom. I was also concerned that we were giving up. The hospice team answered all of my questions and explained everything so well. She had Alzheimers, not cancer.

Then when my husband's lung cancer advanced and he no longer wanted care, he and I made the decision together to bring in hospice. His family was very concerned with this and hospice came in to talk to the whole family and explain to them what was going on. There were able to help them to understand that this was the best.

Could hospice have a separate conversation with your Dad before meeting your Mom?

Louise

Reply # - January 23, 2014, 06:36 PM

Dr West
Posts: 4735

Thank you, Louise. There is nothing like the wisdom of someone who has already walked down that road.

Commodore64: I'm sorry for all of what you're facing. As someone who is part of these decisions every few days, I have noted that while the progression of cancer is something we can expect to be disheartening, it can be made remarkably easier or harder, like swimming with or against the current, depending on whether the patient and family are accepting of the reality of the expected decline and futility of more treatment or not. I sincerely hope your father comes around to a recognition that fighting against death no matter what is like banging your fists against a brick wall.

Good luck.
-Dr. West

Reply # - January 25, 2014, 05:49 AM

commodore64
Posts: 37

Set the palliative care/hospice thing in motion yesterday. Her right leg pretty much doesn't work anymore. Very tough to move her around to the bathroom. To the dinner table. From chair to bed. Can't do hospice until the rads and chemo are done. She wasn't ready to acknowledge that yesterday, so we set the palliative care (bridge care) in motion until her rads are done (4 more, so Thursday).

Last night it sounds like she became completely incontinent. Heading over there now, trying to expedite the visiting nurse associated with the bridge care, depending on how it goes today maybe we can transition to full blown hospice.

Reply # - January 27, 2014, 05:38 AM

commodore64
Posts: 37

OK, trying to transition to hospice. The onco says loss of sensation/control of lower extremities is too fast want her to go to emergency room. She doesn't want to go, and realistically, we can't get her there without help.

I'm thinking this progression is consistent with leptomeningeal carcinomatosis . If she goes to ER or hospital she isn't coming home, I strongly feel this way. Just looking for a sanity check. This rapid progression IS consistent with LMC related to Adenocarcinmas, right?

Last few days been terrible. We just can't manage without hospice, we had to bath her, clean feces, etc yesterday and try to manage the catheter. Just want her to be comfortable.

Reply # - January 27, 2014, 05:53 AM

catdander
Posts:

Of course we can't say anything for sure but we all want your mom to be comfortable. Sometimes that's in the hospital. My mom went from living her life to the hospital in a matter of days and that's where she passed. We wanted her to be home but we didn't have the option.
I'm sure you'll do what's best without worry of preconceived ideas. Remember, the best laid plans often go awry.

Reply # - January 27, 2014, 05:58 AM

commodore64
Posts: 37

OK, rethinking. Sorry for stream of consciousness of last post (and this one).

Called ambulance, getting her to the hospital for further eval. Horrible weather here, roads are terrible, windy (40mph). I don't see how we could possibly get her in the car and to the hospital ourselves.

May not be able to provide for her well enough at home, and we need absolute confirmation that it's LMC complications.

Reply # - January 27, 2014, 03:43 PM

commodore64
Posts: 37

Ok, checked into hospital. Got her in a palliative care suite. The nurses here are markedly different. Highly trained in this stuff, and very good. Hospice doctor met with us and gave us good straight answers and got ahold of my mom's radiation doctor, and onco.

Radiation treatments are stopped. We're meeting with onco and hospice doctor tomorrow to get everyone on the same page. Got her on 10mg oxycodone (instead of a 5/325 Percocet) and upping dose on the Fentinyl patch to 70, (from 40) I believe.

She's moderately comfortable. Probably be in here a few days while they work out home hospice arrangements, and do a little more assessment. Concerned that her urine is very dark, could indicate kidney or liver failing? Going to do some blood draws tomorrow.

Reply # - January 27, 2014, 08:06 PM

Dr West
Posts: 4735

It sounds like after a very rough time, you're finally in a place where it's clear that hospice is the only feasible way to proceed. It's sad that sometimes it requires people to be bludgeoned into accepting that reality when a person is so debilitated that can't even get to and from treatments, but now you can focus on having better control in a tragic situation. And the hospice folks will have a good idea of how to help manage her, I strongly suspect.

The dark urine may just represent poor hydration. In this situation, if she's not eating and drinking much, we generally don't favor adding IV fluids, effectively just prolonging the natural dying process.

Good luck. I hope future days are better.

-Dr. West

Reply # - January 27, 2014, 08:57 PM

bobradinsky
Posts: 144

Commodore64

Your mom's loss of use of lower limbs and incontinence is very consistent with symptoms my wife presented during her battle with LMC. How is her cognitive level and ability to swallow? Palliative care at this time is the very best option. I hate to make suggestions but if she is still able to communicate please take full advantage of it because she may lose this ability very soon. Also if you bring her home for Hospice you may want to consider getting additional nursing care lined up because the hospice people do not visit every day and the off days can be very difficult for the caregiver. My thoughts and prayers are with you. Bob

Reply # - January 28, 2014, 07:58 AM

commodore64
Posts: 37

We can do at least a week in palliative care here at hospital. She had diarrhea all night again. Probably from the radiation. That radiation to her lumbar area wasn't a very good idea in retrospect. Nothing good came from that.

Once visited this morning. All treatments stopped. She is in the care of a very capable hospice doctor now. At time she seems to be in denial, talking about going out to dinner when she recovers a little bit.

Bob, cognitive wise she is a bit spacey. Says a lot of seemingly random stuff every once in a while, but generally can think, process and have a conversation still. Seems to be able to swallow ok, she still loves chocolate chip cookies. My god this is terrible...

Reply # - January 28, 2014, 08:17 AM

JimC
Posts: 2753

I'm sorry for what you and she are going through. I completely agree with Bob that you should arrange as much help as possible if your Mom is going home, or if possible use inpatient hospice care. During the last weeks of her battle with LMC, after my wife spent some time at palliative care she returned home for a week and a half, during which it was very difficult (as well as heartbreaking) for me to care for her. We were able to return to palliative care, and I can tell you it was a great relief to have those very capable and caring people helping her.

My heart goes out to you and my thoughts are with you.

JimC
Forum moderator

Reply # - January 28, 2014, 10:11 AM

marisa93
Posts: 215

I am so sorry for what your mom and your family is going through. Sounds like your mom is in the best place she can be for her comfort and care. It is also good that you have the help of those very qualified, caring people. My husband went from the hospital to in patient hospice for his final days. He very much wanted to return home but looking back I see it would have been extremely difficult to care for him there. This is a difficult time and I wish you all peace and comfort....

Lisa

Reply # - January 28, 2014, 12:01 PM

commodore64
Posts: 37

Jim we are arranging in house hospice care. Her liver is failing,and WBC is low (2k). Checking now for C Diff. as long as we are trying to stabilize her we should be able to keep her here. Trying to get her stable enough to go home, failing that we start in house hospice tomorrow. In palliative room now, docotrs are great, keeping her comfortable.If by some miracle she stabilizes by Monday,we will have to do in house with help, or nursing home. I'll worry about that in a day or so...can't really plan beyond a day or so. Will contact some in home nursing servicing just in case. Our hospice case manager is helping with that too.

Thank god for the hospice folks...

Reply # - January 30, 2014, 05:16 AM

commodore64
Posts: 37

She's getting wackier and wackier. Not sure if it's meds, the mets, or both. Lot of visitors yesterday. Expect tons today. Still having very acidic diarrhea, I'm thinking it's complications from liver failing.

Had "the talk" with her yesterday. She was lucid and understanding. But later in the day was talking about going out to dinner when she gets better. So tough.

Reply # - January 30, 2014, 07:51 AM

JimC
Posts: 2753

commodore64,

I'm sorry that this just doesn't get any easier. It's not unusual to switch between being lucid and aware of the situation to denial.

I'm sending my best thoughts to you for strength and peace of mind, and to your Mom for comfort.

JimC
Forum moderator

Reply # - January 30, 2014, 11:00 AM

commodore64
Posts: 37

She has stabilized somewhat, to the surprise of the doctors. Insurance laws being what they are, unless some new symptoms present between now and tomorrow, we will be taking her home on Saturday. Making arrangements with hospice for the bed, and meds, etc.

Also looking into hiring in home help anywhere from 12-24 hours a day, I guess. Hospice folks said that would probably cost in the range of 200-250 per day, which doesn't sound too bad. She's looking forward to the Superbowl. So that's good, right?

Called about cremation services, they said about $1,300. This is so surreal. Not in a good way, ha.

Reply # - January 30, 2014, 10:00 PM

Dr West
Posts: 4735

It's good that she's looking forward to the Super Bowl as long as she's a Seahawks fan. :wink:

But seriously, I'm glad she's doing somewhat better. Perhaps that'll give a chance for everyone to catch their breath.

Reply # - February 1, 2014, 02:17 PM

commodore64
Posts: 37

We got her home today. She is stronger than she has been, maybe adrenaline/excitement about being home. She can raise both her legs now. I wonder if some of the loss of strength etc was from that radiation edema. Or as noted by folks here, the variability in this LMC.

She's home and comfortable. Dr West, you will be happy to know she's rooting for the Seahawks tomorrow.

Still a bit wacky mentally. But really the decline she was on since last week does seem to have stabilized. Hospice folks are great. Such a valuable service.

Reply # - February 1, 2014, 09:54 PM

Dr West
Posts: 4735

I just hope you didn't purposely mean to juxtapose "she's rooting for the Seahawks tomorrow" with "still a bit wacky mentally" :)

I'm glad she's doing better, though. The variability is something that can happen with the underlying LMC itself, the effects of the steroids, or potentially some beneficial effect of the radiation kicking in.

Great to know that hospice is working well. We hear that all lot, despite how resistant so many people are to it.

-Dr. West

Reply # - February 4, 2014, 08:13 AM

commodore64
Posts: 37

She's getting very agitated and restless. All of the visitors, even her mom and brothers etc are causing a ton of stress. They don't understand that she wants to be alone, and stay for hours at a time. The hospice nurse had a talk with them yesterday. They left 3 minutes later.

Of course, they blame my dad...She just wants to be alone with my dad. My dad says he thinks me and my sister being there will not cause additional stress. I can't decide if that's true or not. Trying to give her privacy, dignity, and space.

Last night, she woke up and tried to get out of bed, and ended up on the floor, her arms hanging from the bedrails. Repeating, "I gotta get out of here, I gotta get out of here". I remember when she and my dad told me how terrible it was when her father did the same thing, at the end of his battle with terminal lung cancer. I'm thinking we are just about there. I truly hope we are.

Hospice people are fitting the bed with additional rails, and looking at different anti-anxiety/sleeping aids. Xanax is no longer enough.

I dropped my phone in the toilet this morning, fumbling to answer/check a text. Normally I wouldn't do this while on the toilet, obviously, but the situation being what it is, I felt compelled to check. Well, my dad got a good laugh out of that, so I guess that's worth about $200 it'll take me to replace the phone. Ha Ha.

Reply # - February 4, 2014, 12:38 PM

zemswife
Posts: 13

Hi Commodore64,

This sounds a lot like what I have observed in my 3 experiences with someone in hospice. I hope that they can find something that will help calm your Mom when the restlessness gets bad.

We noticed that more than a couple of visitors at a time was disturbing. It happen when visitors started talking with eachother and the conversation got animated. There was lots of reminising My Mom, Dad and my husband couldn't effectively communicate and agitation started. At that point, it was best for everyone except the caregiver at the time to leave the room, get out of earshot of them and let things get more relaxed again.

Does she have any kind of soothing music that she has listened to in the past? My Mom was very religious and we played soft gospel music and hymns. My husband loved country music, we found slow classic country calmed him. Dad was extremely deaf so this didn't work. But he did the best when my Mom was close.

Thinking of you and wishing your Mom, you and your family comfort.

Louise

Reply # - February 4, 2014, 03:43 PM

commodore64
Posts: 37

Sublingual Ativan and some other comfort medicines were put in place. My sister is calling me later with more details from the hospice nurse's visit.

Talked to my mom on the phone. Holy cow, she sounds terrible. Sounds like trouble swallowing and coughing, even talking. In fact the only sign of her body shutting down that isn't present is lack of appetite. She does eat and drink some. And her urine, was very dark last week, but has now a more normal appearance.

reviewing things here to try to assess where we are at: http://www.webmd.com/palliative-care/journeys-end-active-dying?page=2

Reply # - February 4, 2014, 08:35 PM

Dr West
Posts: 4735

I'm sorry she's going through this and you're all forced to watch, unable to help as much as you'd like, but I'm glad you at least have hospice folks working with you. It sounds like they're doing a very admirable job in a trying time. The dying process can still be awful, but they can help make it a lot less awful.

-Dr. West

Reply # - February 6, 2014, 05:57 AM

commodore64
Posts: 37

I hope it's OK that I keep posting here. I don't know why I'm trying to document this journey, but it was so helpful to me to be able to read posts about this disease and how things progressed right up to the end. It's also somewhat cathartic to me to get reality checks here and there.

My mother is having severe panic attacks. Asking if she has cancer, or if she's going to die. Fidgety, restless and almost unrestrainable. Hospice nurses are on the way, obviously the med changes enacted yesterday aren't efficacious enough. My dad is destroyed. This is the final straw, he's breaking down too. My sister is on her way over there now.

She called me in a bit of hysteria too. When she called crying, I was hoping it was because my mom had entered a coma or passed away. That would be better than this. I hope this is a normal thought process.

I told her that the panic response is physiological (not enough blood getting out to her brain, etc), and that mom probably isn't as cognizant of things as we are. I hope that's true. I recognize my mom's symptoms from my own panic response (Night terror related, it's a long story, but we got it controlled with nexium-->if you want the whole story I'll tell ya ;) ) To think of her in that state...it must be excruciating. I'm also fearful that it might trigger a panic attack in me (I've been close a few times when she is exhibiting panic signs, but manage to calm both of us down).

Reply # - February 6, 2014, 06:32 AM

marisa93
Posts: 215

I'm sorry to hear what all of you are going through. It is a tough thing to watch and makes you feel very helpless. Posting here was very helpful to me as well, we understand. And wanting your mom's suffering to be over sooner rather than later is definitely a normal thought process! It's very difficult to watch a loved one suffer! I wish all of you peace and comfort in the days ahead....

Lisa

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