Dad diagnosed with Stage 4 Adenocarcinoma - 1266895

stephanie13
Posts:16

Hi my 70 year old dad was diagnosed with Stage 4 Adenocarcinoma Lung Cancer with bone mets on the ribs, neck, shoulders, pelvis, tailbone and liver. He was dx a month ago. He does not have a mass in his lungs but the drs describe it as hazing on the right lower lobe. We have been in hospital for a month, he is currently in pallative care. He has lost 20 pounds. He has done 5 radiation treatments and that has reduced his pain considerably. he is currently doing another 5 on his neck and shoulders as he has tingling in his hands now. He is back eating and has been taken off IV fluids and oxygen, he is also back walking. The hospital is talking about letting him come home. We went to see the chemo dr at Vancouver's cancer clinic and she told us to come back in a month and if he gets stronger they may consider chemo. My question is what can I do to make him stronger, am I missing anything and coule the chemo delay the spread? He has gone through a delrium stage possibly from infection and radaition combined but he has come out of it now and is actually doing pretty good. This came as a complete shock to me and my family, he just retired. I am trying to stay postive but don't know if its just false hope. The drs keep telling us he only has a few weeks and his cancer is very aggressive but he seems to be getting stronger. This website was recommended to me by the chemo dr. I guess I am just trying to find out as much as I can and am hoping other people's experience and knowledge can help. Thank you

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Reply # - November 3, 2014, 11:59 AM

cards7up
Posts: 635

Did they test his tumor for mutations? If he had a specific mutation, he may be able to take a targeted pill for that mutation which is not chemo. Has he had a brain MRI? Wishing him the best. Take care, Judy

Reply # - November 3, 2014, 12:05 PM

stephanie13
Posts: 16

Hi Judy Thank you for your response. Yes he tested negative for the mutations and yes he had a brain MRI that showed it had not travelled to the brain.

Reply # - November 3, 2014, 03:14 PM

catdander
Posts:

Stephanie, I am so sorry your dad is going through all this. I know the shock you all must be living in.
You're not likely to get false hope here but we all have hope that tomorrow will be a better day. Hope brought on a new meaning for me when my husband was diagnosed.

Your dad's oncologist likely saw him as too weak to withstand chemo treatment and that's very understandable from your post. For a healthy person chemo can cause debilitating effects for those who are already frail it can easily do more harm than good. It's possible he will gain enough strength to take chemo though only time with tell. It's impossible though to know that from here and if your dad's onc is smart enough to know Grace is an excellent place for you to find info she's thoughtful. As a matter of fact we have a faculty member who is in Vancouver, Dr. Janessa Laskin.

We have a section on caring for those who are frail and or elderly that will have good info and we'll answer any questions you have on the way. My husband was in a very delicate state at one point and I know how torn you can be when trying to decide on the balance between treatment and comfort care. FYI for me and everyone who's commented on the subject, having a decision to make is horrible in its stress, having made the decision relieves mountains of that stress.

As long as you can find something your dad is interested in eating he may continue to build strength. The nutrition drink Ensure plus or it's like has helped many. Jokingly I talk to people about putting bacon or bacon grease in everything D eats but it's seriously the best appetite enhancer I found.

There is so much to read on the subject of palliative care and anti cancer treatment. I'm linking you to a list of links, skip the ones about surgery or early stage, http://cancergrace.org/lung/category/lung-cancer/special-populations-in…

All best,
Janine

Reply # - November 3, 2014, 10:07 PM

Dr West
Posts: 4735

I think it's very reasonable to see if things do get better. If the prediction is wrong, which is possible, he may well be a candidate for chemotherapy. In the meantime, focusing on his symptoms and just trying to support him as much as possible burns no bridges.

Good luck.

-Dr. West

Reply # - November 4, 2014, 07:48 AM

stephanie13
Posts: 16

Thank you for your replies. Dr.Laskin was who recommended this site, that is who we are going to see on Nov.26. My dad's delirium started again last night. Is delirium a side effect of radiation. It seems it started last time when he was going through radiation and it took over a week for it to clear. He did take more opiates this weekend for a radiation flare up so maybe it's a combo of both. It's just so hard to watch.

Reply # - November 4, 2014, 08:20 AM

JimC
Posts: 2753

Hi Stephanie,

Delirium isn't necessarily a side effect of radiation, especially when not directly at the brain, but your dad has so much going on that his delirium might just be from the cumulative effect of everything, and the stress of the radiation triggers it.

I'm hoping that he will get through the remainder of his radiation treatments without too much further trouble, and that all of his symptoms improve. Both he and you, as well as the rest of your family, will be in my thoughts.

JimC
Forum moderator

Reply # - November 4, 2014, 08:36 AM

stephanie13
Posts: 16

Thank you Jim, this site is wonderful. I can express the appreciation for the support and answers I am getting here and it's only been 2 days. What you said has made sense and I am hoping when the radiation is done he will improve like last time. He is quite worried about this one because he does not like the mold they are putting on him to radiate the neck. He has no other health problems, honestly the worst he's ever had in all his life was a cold so I am hoping if we can get his strength back we can try the chemo. The Drs are saying they are surprised at how well he's doing and i'm never quite sure how to take that but day by day I guess. Again thank you for your response, thank you all for your responses and positive thoughts. 3 more radiation treatments to go.

Reply # - November 4, 2014, 02:03 PM

catdander
Posts:

Stephanie, It's great to hear your dad is doing better. I think doctors are surprised at how well a person with lung cancer can do with good palliative care. I know how relieved you must be to see he's feeling better.

Best of luck,
Janine

Reply # - November 4, 2014, 05:05 PM

stephanie13
Posts: 16

Thank you Janine. The Drs gave him ativan today along with halodol, plus his hydromorphone, dexamethasone, and tylenol. He's also getting nozanan at night. He is very confused and drowsy today but I guess that to be expected with all the drugs, especially with the introduction of the ativan. Hopefully if his shoulder pain recedes the way the rib, back, and hip pain has with the radiation they will decrease some of the pain meds so he's not so confused. I find one of the most frustrating things right now is not knowing if it's spreading more. He's eating and walking and breathing fine which is so great to see but the cancer is just gonna keep spreading, especially if we aren't doing anything to stop it. Chemo is the only chance I guess. I'm sorry if I'm not making sense I'm still processing everything at the same time as trying to digest all the stuff I'm learning on a daily basis. I am happy that this site was recommended to me. Thank you

Reply # - November 6, 2014, 12:42 PM

stephanie13
Posts: 16

Update on my dad. Latest MRI shows a fracture in the spine and two in the shoulders. May radiate the spine. Pallative care is sending us home monday. Pallative dr told me she wouldn't suggest chemo even if he got stronger, says in her opinion he only has a month or two. I'm so tired of everyone's opinions..we went from 2 weeks to a week to a month to now maybe two..they say he's got tumors everywhere in his upper Skelton but maybe the lung has stabilized for now but maybe not..i just don't know what to do, say, or think anymore. Thanks for listening

Reply # - November 6, 2014, 01:29 PM

JimC
Posts: 2753

Hi Stephanie,

I'm sorry about the uncertainty; that's something that many cancer patients and their loved ones suffer through. It's probably premature to try to decide if your dad will be able to tolerate chemo right now. If he does continue to improve, his doctors can then make a recommendation based on the situation at that time.

I certainly hope that he will surprise his doctors and be ready for further treatment soon.

JimC
Forum moderator

Reply # - November 6, 2014, 02:14 PM

stephanie13
Posts: 16

Thank you Jim, especially for your prompt reply it brings me comfort and reading the responses and posts on this site makes me feel better than any face to face communication I've had with the Drs. Please don't misunderstand me, I am not saying the Drs are bad, I just find it so frustrating that they are always so negative. Thank you for putting it so simply..its too soon to tell and we keep hoping. Right now we will make the best of him coming home. Thank you again

Reply # - November 6, 2014, 06:13 PM

Dr West
Posts: 4735

I'm sorry that this is such a difficult situation. I think very often doctors are overly positive because they want to give people what they want. It's harder to give bad news -- nobody wants to do it -- but it's really wrong to give people false hope if, in the doctor's (admittedly imperfect) judgment, encouraging forecasts aren't realistic.

I also hope he does far better than those discouraging projections.

-Dr. West

Reply # - November 6, 2014, 10:36 PM

bobradinsky
Posts: 144

Stephanie

I'm so sorry to read that your Dad is having such a difficult time. Bone mets can be very painful and it sounds like he has more than his fair share. The pain meds coupled with lack of good nutrition can possibly be causing the delirium. Make sure he stays well hydrated and if he does not feel like eating get him to take ensure. IV drips can also be very restorative. I don't know what they put into them but we spent many a week-end at the hospital cancer care center doing that.

I pray that your Dad gets some relief and gains enough strength back to continue treatments. Be sure to get some rest for yourself and hopefully some relief too. There is only one thing worse that having to deal with metastatic cancer and that is taking care of someone that has it. I wish both of you good luck and peace.

Bob

Reply # - November 7, 2014, 07:09 AM

stephanie13
Posts: 16

Thank you for your reply Dr.West. I completely agree that giving false hope is horrible and bad news is always difficult to give (even more so in these situations). I guess my frustrations is more with the uncertainity of it all. In the end I guess drs are have a job like any others and they can only give their best estimate based on experience and knowledge, its unfair of me to expect more. We just keep hoping and do all we can that is in our control. Maybe we will get lucky :) For now I will concentrate on him coming home Monday. I do have a question about the fractures though, besides radiation is there anything we can do to prevent or treat them? Currently he has the 3..2 on his shoulder and one in his back..he is shrinking. Thank you so much.

Reply # - November 7, 2014, 07:32 AM

stephanie13
Posts: 16

Hi Bob, thank you for your reply. He drinks the ensure plus like its going out of style and he actually has a good appetite where we are eating all day long (especially since I got his dentures refitted) and it helps that my mom is an excellent cook. I also am adding muscle and weight gainer to homemade smoothies. Dr.Laskin at the cancer center said he should try for a high fat diet to gain back some of the 20 or so pounds he has lost so he enjoyed hearing that. By my calculations he's up around 3000 calories a day. They took off his IV last week. Thank you for your prayers, his pain is better than when we started this roller coaster ride a month ago so hopefully he stabilizes. Hopefully he will be more comfortable when we get him home. Thank you again for your prayers and best wishes.

Reply # - November 7, 2014, 09:23 AM

JimC
Posts: 2753

Hi Stephanie,

If fractures have occurred, you would probably need the advice of an orthopedist to see what interventions may be possible, keeping in mind your father's overall condition.

In an effort to prevent fractures, patients are often given bisphosphonates such as Zometa (zoledronic acid) and XGEVA (denosumab). You'd need to check with your dad's oncologist to see if that is an option for him.

JimC
Forum moderator

Reply # - November 7, 2014, 09:27 AM

stephanie13
Posts: 16

Hi Guys sorry I have another question. With my dad coming home I just want to double check I'm not missing anything or if there's something I need that i don't know about. I have got him all the bars and commode and a wheel chair and walker. I got him a transfer bench for the shower for now but I have someone coming in to cut the bathtub so it becomes a shower. I am also getting a caregiver to help my mom during the day. Is there anything else?

Reply # - November 7, 2014, 12:57 PM

catdander
Posts:

Stephanie,

In truth I'd probably have written this post even if you'd not ask, "is there anything else". It's been one of my most important issues to understand since my husband's dx changed to stage IV.

I don't know how hospice care works in the Canadian healthcare system but they are the premier group to know what a person needs to be comfortable at home.

From what you've said comfort and nutrition are the number one and one goals for your dad. No matter what happens tomorrow whether or not he ever regains strength enough to consider chemo, today this minute you want him comfortable. There are a lot of misconceptions about hospice one being they come in only when someone is about to die. This isn't true. They come in assess what your dad needs to make his life as good as possible they help the caregivers with whatever they need as well. They will discontinue services if your dad goes into treatment. It seems to me a win win situation. We have several blog posts and even one extraordinary New Yorker piece on the subject the latter not easy reading but all very important pieces for people in your position.

With so much respect it's impossible to explain,
Janine

http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fac…
http://cancergrace.org/cancer-treatments/2012/08/12/hospice-is-help/
Following is the New Yorker article written by Atul Gawande a doctor and writer it includes stories and such thoughtful commentary that it's difficult to read. Though in a strange way at least to me it can be very comforting in its truth. http://www.newyorker.com/magazine/2010/08/02/letting-go-2?currentPage=1

Reply # - November 7, 2014, 02:09 PM

stephanie13
Posts: 16

Thank you Janine. I am familiar with hospice care, my grandfather was in hospice 6 years ago when he passed from lung cancer. This is not my first go around with this awful disease but with my grandfather it happened in a mattter of weeks. This time its a little more complicated. Having said that I have a bed reserved for my dad in hospice if it becomes too hard at home. I have a pallative nurse coming in once a day for pain management and any other issues that arise. She is also on call 24 hours a day. When we learned of my father's diagnosis we discussed the DNR, there will be no extrodinary measures should he stop breathing or anything else like that. All of our affairs are in order from will to burial to last wishes. I think i have covered every angle and base and I hold no delusions for a cure. I do not intend to put my dad through any painful or uneccesary treatments that would do him nothing but harm. All I am trying to do is be as informed as possible and advocate for my father because no matter what..he is my father but to the drs he is just a patient. I haven't given up and I will continue to do what I can because he too wants to fight until he believes it is no longer possible. And I guess you never know what could happen. Thank you again for the links and your time. It's funny..before this I never blogged, posted, tweeted, or used social media of any kind (no facebook, pintrest..) ..who knew I would start using it to find such comfort and compassion. Thank you again

Reply # - November 7, 2014, 07:12 PM

catdander
Posts:

Stephanie,

I quite understand, everything you said resonates with what I've been through with my husband perhaps I already had a facebook accounts but I didn't and still don't have the need to move much past this website to get info. I want everyone to understand there choices. When my dad died in 1970 there was no such thing as palliative care or hospice care. In 1975 my sister, a nurse took care of her mil at home. She was given prescriptions for narcotics for Lynn to administer which was unheard of. During this time doctor and nurse groups interested in the new idea of hospice care/comfort care visited her during her time with her mil. I have my own self doubts when thinking about tipping the balance between more and less treatment so I went there, I hope it wasn't too harsh to read and maybe someone else will get something from it. We have a long time member, Debra with lung cancer who is just coming off home based hospice after a year for treatment.

I hope your dad does well for a long time.

You can get your share of comfort and compassion here for sure,

Janine

Reply # - November 7, 2014, 09:02 PM

bobradinsky
Posts: 144

Stephanie

One additional item you might want to consider is your dad's bed. My wife could no longer be comfortable in our standard king size bed much to my chagrin. I bought her a twin sized temperpedic bed with a hospital style adjustable frame. I also got a set of bed rails to go with it after she fell trying to get out of bed on her own. The bed made her much more comfortable and secure.

Bob

Reply # - November 10, 2014, 06:35 AM

stephanie13
Posts: 16

Thank you Janine and no it wasn't too harsh to read, I apperciate the information and let's face it this is a harsh horrendus disease at this point sugarcoating will not help. We took my dad home saturday for a few hours and it went well. We took him home yeseterday for a few more and it did not go well. We had to bring him back. He was in severe pain and for the first time short of breath when trying to get out of bed. We are not sure if he cracked a rib or broke or a bone or pulled a muscle. His restlessness is so hard to watch. he thinks he can walk off the cancer and just keeps pushing himself to walk and when he can't he wants to be pushed in the wheelchair. It is so hard to watch. He is on Halidol and Nozanan but sometimes they do not do the trick. he was like this after radiation the last time but I think its more a combo of the increased pain medication and the progression of the disease. He always is more clear and does better after sleeping but he just fights it. They ran some tests his EKG, white blood cell, red blood cell, kidney, calcium and other stats were all good, in fact they have improved since the last time they checked. He's just weak and the disease is just progressing. He was supposed to be coming home today but I don't think it will be possible, in fact i've told the family that I think we need to go straight to hospice when he is released from the hospital. We could possible manage if we were all there all the time but unfortunately we all have jobs and can't be there all the time. Hopefully this latest set back is just a pulled muscle and his restlessness settles with some sleep. Again thank you for your support and please don't worry about being too harsh I welcome any information I can get. I am a researcher by nature so it helps to read what I can no matter the topic.

Reply # - November 12, 2014, 04:06 PM

catdander
Posts:

Hi Stephanie,

I didn't see your latest post until now. I'm so so sorry about this, it sounds absolutely horrific. Words can't describe I know and I wish there was something we could say to make it even a little better. This is the cruelest thing for a daughter to see, I've been told and read here that some of the symptoms in cases like your dad's are harder to see than to experience.

How and where is he? I hope he's more comfortable and at ease. Keep us posted and don't hesitate to ask.

Hoping tomorrow will be a better day,
Janine

Reply # - November 12, 2014, 06:54 PM

stephanie13
Posts: 16

Hi Janine thank you for your reply. We are still in Pallative care. Looks like we are going to hospice on Friday. He is doing better, he's off the oxygen again and he's back eating and the Drs say he's stable. He did not break anything. He is still very confused, he has moments where he's lucid. He will not sleep at night. I guess I'm wondering if he's taking too much pain medication. I've been at this with him for awhile and these days he just seems like he's taking breakthroughs to take them. Please don't misunderstand me I am not trying to say he's not in pain or he doesn't need lots of pain meds but if I ask him to rate his pain he'll say it's a 2 one minute and a 8 the next and it very well might be. It's so hard to know. He used to be able to describe where his pain was. Now if you tell him he just had a breakthrough and ask him how his pain is he says it's so much better but truth is he hasn't had a breakthrough. Again I don't want him to be in any pain I just can't help but notice they keep increasing his pain meds but his pain really hasn't gotten that much worse. It was so bad on the Sunday we thought he broke something but the xray showed nothing and he hasn't complained of back pain since. I asked the Drs and they said well you don't want him to be in pain do you. Of course I don't and I understand it's a fine line but he's gone from 24mill a day to 60milligrams in 1 week. Again it's such a fine line and I guess I'm just asking if this is normal. It probably is but I just hate seeing him so confused but of course that's better than in pain. Also does pain medication ever get decreased? And of course it could be the progression of the disease itself. I just don't know. We'll see how it goes in hospice. Thank you for listening.

Reply # - November 12, 2014, 08:37 PM

JimC
Posts: 2753

Stephanie,

I am sorry you and he are going through this awful time. I think it is hard to be certain how aware your father is about his pain or how accurately he can communicate.about it. On the other hand, palliative care/hospice staff tend to be very skilled at controlling pain, and have much experience with patients in a similar condition. When you're dealing with the kind of condition your father has, pain medication usually doesn't get decreased; rather the need for it increases, as does the tolerance for it, resulting in increasing doses.

My thoughts are with all of you.

JimC
Forum moderator
.

Reply # - November 12, 2014, 08:43 PM

Dr West
Posts: 4735

I agree. The hospice folks are completely dedicated to having people live as well as possible for as long as possible, and they have more experience with pain medication and the balance with other symptom management as just about anyone. And yes, it's certainly possible to drop the dose of pain medication. These regimens are meant to be dynamic, changing as the circumstances change.

Good luck.

-Dr. West

Reply # - November 13, 2014, 05:08 PM

catdander
Posts:

Keeping you, your dad and family in my thoughts Stephanie and hoping he is comfortable and maybe even stronger.

Best,
Janine

Reply # - November 14, 2014, 09:05 AM

stephanie13
Posts: 16

Thank you for your thoughts and wishes. it looks like we are coming to the end. My dad's breathing is very bad and he is getting weaker and weaker. Its hard to believe that we had him at home Saturday. He has started to get the mottling on his hands and legs and not eating or drinking or going to the washroom. I do not think he has another comeback in him. Thank you for your help, adivce, and compassion throughout these past weeks.

Reply # - November 14, 2014, 08:24 PM

Dr West
Posts: 4735

Yes, it sounds like he's close. I'm glad you're there; I hope things are peaceful for him, and for you.

-Dr. West

Reply # - November 15, 2014, 07:43 AM

JimC
Posts: 2753

Stephanie,

I'm sorry that it's reached this point. As Dr. West said, our hope now is for peace, comfort and freedom from pain.

JimC
Forum moderator

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