When to stop treatment and where to go from there…?

Portal Forums Coping With Cancer / Social Work Access to Care When to stop treatment and where to go from there…?

This topic contains 11 replies, has 4 voices, and was last updated by catdander forum moderator catdander forum moderator 1 month ago.

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February 4, 2017 at 7:08 pm  #1289991    

anypap21

Hello
So many times I’ve started to post here, but haven’t been sure what to ask until today. Here’s the full story.
Upon my father’s diagnosis of NSCLC with rib, hip, back, brain, liver and kidney metastasis (06/05/16) he began his chemo treatment with radiation on his brain and rib. At first he was very responsive. Within two months of chemo, he was almost back to his normal self. He’d put on weight, was off the oxygen and was even back to volunteering at the Air Force base. We were so full of hope.
Then, the chemo stopped working. The oncologist put him on Immunotherapy (Tecentriq). As soon as he started the treatment, he lost his appetite/weight, became very weak and slept a lot. These all seemed like side effects of the treatment. However, 10 days ago, a new scan confirmed that the treatment wasn’t working and that the tumors were growing and multiplying. His oncologist said that the next course of treatment would be to radiate the 2 new tumors on his brain, and then start a new chemo/immuno combo treatment.
Unfortunately, 4 days later the home nurse worried that he had contracted pneumonia and called the paramedics to take him to the hospital. While in the hospital, the doctor said he wasn’t kicking pneumonia, increasing became weaker (couldn’t sit up or get out of bed) and was in a LOT of pain. The doctor said he probably only had a couple of months and recommended Hospice. We contacted his oncologist who confirmed that Hospice in-patient was the best course of action. Trusting they knew best, we decided today to make the move, with the hope that they would take the best care and get him home
WE were all let down by Hospice and feel that we made the wrong choice. How do we know if we are giving up or doing what’s right? I live in Amsterdam but will stay with my mom in Dayton, OH to care for my father if we thought it was the best, but I don’t know if we can provide for him enough. He needs full time care. How do we know where to go now?

February 5, 2017 at 9:06 am  #1289994    
catdander forum moderator
catdander forum moderator

Hi anypap21,

Welcome to this side of the forums. I’m so glad you decided to post because this is what I would consider one of the most important and most difficult decisions to make. Moving to solely comfort care and away from anticancer treatment provides the person with cancer and their loved ones a much needed focus on comfort. Hospice professionals are extremely well versed in providing this care as well as care and guidance for loved ones.

It sounds as if your dad is too sick for anticancer treatment. If he becomes well enough that he can and wants more treatment while in hospice care he can always opt out of hospice and back into treatment, it’s a 2 way street. I know people who have done this. I’m not suggesting this will be the case for your dad but the knowledge that he can leave is often settling for patients and family.

With that said not all hospice providers are the right fit for everyone. It may be a good idea to google Dayton Oh hospice. I found at least 3 in Dayton, at least 2 of them provide facility services. The right fit can make a life long difference for family. There have been a couple of members who had to work at finding the right fit, who changed either the provider or made changes of people within an organization before feeling good about the program but I’ve never heard that someone was sorry they chose to move into hospice care, only those who wished they’d moved into it sooner. Hospice is familiar with frank discussions from family don’t hesitate to have them with hospice.

I’m am so very sorry your dad, family and you are going through this.

The following links may be helpful if you’ve not read them.

February 5, 2017 at 9:42 am  #1289996    
catdander forum moderator
catdander forum moderator

You’ve probably read these but just in case.

http://cancergrace.org/cancer-treatments/2012/08/12/hospice-is-help/

http://cancergrace.org/cancer-treatments/2011/03/10/what-is-hospice-fact-and-fiction/

http://cancergrace.org/cancer-treatments/2011/01/19/why-do-we-fall-so-short-with-hospice-care-in-the-us/

http://cancergrace.org/topic/hospice-selection-what-questions-to-ask-in-choosing-the-provider

Keep us posted and all best to you and yours,
Janine

February 5, 2017 at 9:50 am  #1289997    

anypap21

Thank you Catdander, for your prompt reply. I knew that I could count on the CancerGrace community! You know, years ago I actually worked with Dr. Jack West and Denise to rebrand and launch the new look of Grace…I’d never imagined that I’d be here as a member. But nonetheless, very happy the resource exists.

Last night was very emotional for us moving into Hospice. For me it was the hardest part of the journey in a way that I can’t explain. I have since spoken with a friend who has said the same as you…where we might need to speak with a few different people to make sure that we are getting the best service and resources for us to fully utilize Hospice capabilities.
I think the biggest question for us, is does he stay there or do we bring him home? As I said, I live in Amsterdam, NL, but am fortunate to have an employer and a fiancé who are so supportive and understanding of my needing to be in Dayton. If he were to come home, I would stay and help my mother. But even with us together along with a nurse coming by in the morning and evening, I’m not sure that we could provide what’s best. Emotionally, it would be so nice for him to be home, but he is a big man and, when he fell the other day, the two of us together could barely get him up. And that’s when he had even slightly more strength then now. The hope was that he would get stronger at Hospice, but he doesn’t seem to be kicking the pneumonia. I guess we just have to see day by day…

Thanks again for the support. I really needed it last night/today.

Oh, and you mentioned sending some links, but I didn’t see them in your note.

B

February 5, 2017 at 9:50 am  #1289998    

anypap21

Nevermind my comment about the links. I see they were sent as I was typing.

Thank you

February 5, 2017 at 3:27 pm  #1290003    

marisa93

Hi anypap21,

Making the decision to move to Hospice care is not easy. I experienced some of the same feelings you describe after trusting that the drs knew best and I had my husband moved to Hospice (in dayton).
Looking back, I know it was the best decision that could have been made but it was very confusing at the time. They were really wonderful to my family.

Sending thoughts for your father, you and your family…


Nov 23, 2010 husband(49/smoker) dx IV NSLC mets to brain/liver, Nov-Dec, 2010 15 WBR tx, Jan’11 MRI much improved, Dec ’10-Mar’11 4 txs carbo/alimta/avastin w/good response, Apr ’11 MRI mets almost gone, Apr ’11 start maintenance alimta, Jul ’11 MRI still good, Jul ’11 carbo/taxol for new lung met and 2 liver mets, Oct ’11 MRI new brain mets and major progression in liver, Nov 2, ’11 GK, Nov 19, 2011 at peace
Since then: http://cancergrace.org/forums/index.php?topic=11426.0

February 5, 2017 at 6:36 pm  #1290005    
JimC Forum Moderator
JimC Forum Moderator

Hi anypap21,

When my wife was nearing the end of her fight with lung cancer, I faced the same difficult decision. I was trying as best as I could to care for her at home, I knew that she needed the skilled nursing care that only our cancer center’s palliative care/hospice unit could provide. She too had fallen, and though it was without injury, I feared that another fall could result in painful bone fractures (she had a number of bone metastases ). As Lisa (marisa93) said above, it was a difficult choice but the right one.

Sending best thoughts to you and your familyfor peace and comfort.

JimC
Forum moderator


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

February 6, 2017 at 7:43 am  #1290008    
catdander forum moderator
catdander forum moderator

Hi B,

Thanks for your help with the site, it was a life saver for me and maybe literally for my husband, when he was in treatment.

I wish there was an easy answer to your question. I don’t have experience with making that decision. We weren’t able to get my mom home before she passed but the hospital did give her a mini suite for high end ortho patients, plenty of room for family and quiet/no machines for mom. It was what I think of as a good passing and what I imagine in facility hospice care to be like.

If it were me I hope I would do what was best for the moment, all too often the moment is all we have. If circumstances change so can care.

Just a thought about the pneumonia and I don’t know that it would change treatment I imagine he’s already on steroids. I wonder if it’s not typical bacterial or viral pneumonia but pneumonitis from immunotherapy. It’s not common but very possible side effect. If so anti viral or bacterial treatments aren’t helpful.

All best,
Janine

February 7, 2017 at 4:09 pm  #1290020    

anypap21

Thank you all. Wow. You have all helped ease the anxiety more than you know.

We have now settled in at Hospice of Dayton. Dad is very well taken care of (with the exception of one nurse who just seems to be VERY heavy handed in the medicating).

He’s a tough nut to crack…a devoted husband and father of two girls, he has always been the protector. Never really showed emotion or vulnerability. This whole experience has really challenged him emotionally. Though he’s opening up more and more every day. We’ve had some heart to hearts. I’m getting married in July and it’s very tough for him, knowing that he won’t be there. Speaking about it was the first time that I have ever really seen him cry. But I know that he will be there in spirit and that’s all that matters. And he feels reassured knowing that I have found a great man to have in my life.

Today, some of the loveliest people came through Hospice. As I was clipping his nails and giving him a manicure, a lady came by giving hand massages. Together, we gave him the royal treatment. Then a lady playing the dulcimer came by. She told us how she found her instrument at a shop in Berea Kentucky…where my mom happened to go to college. My father told the story of how they met and how he’d commute from Cincinnati to EKU on the weekends to see my mom. It was so sweet to hear him tell this story. And then, without knowing, the lady played Edelwisse, which happened to be from the Sound of Music which my parents went to see on their first date. So without knowing, these complete strangers contributed to some very special moments that are so appreciated during this time. Something that he wouldn’t have experienced if we had him at home or in the hospital.

Realizing that this is a little less medical than most posts here, I will leave this at that. But thank you so much for your support and presence (even if virtual). It’s been very comforting to have the GRACE community.

Bethany

February 8, 2017 at 8:18 am  #1290024    
catdander forum moderator
catdander forum moderator

Thank You Bethany for the wonderful post and please don’t feel like it’s not applicable to our mission. It’s one of the most appropriate and uplifting posts I’ve read on our site in a long time.

I’m so happy for you and your family for finding a place for your dad. I know how difficult it is to see the emotional changes happening in a person. It’s the new normal taking place and can be embraced so beautifully as you’ve described.

Like we talked about earlier this is one of the most difficult conversations and decisions that needs to be made but too many, if I remember right, most people end up in hospice so very late or not at all. We need examples like this where people get the chance to experience positive moments. So please keep us posted with good and bad, we’d loved updates.

Maybe the heavy handed nurse was heavy handed on the meds to stabilize the symptoms. One of the hallmarks of comfort management is to get ahead of the discomfort then back off to a balanced place. This is an easy enough conversation to have to get an understanding of what’s going on.

I hope your dad gets to have many more moments of happiness.
All best,
Janine

April 26, 2017 at 7:14 am  #1290645    

anypap21

I realized that I never did post an update here…

My father passed away 2 days after my last post. After his “rally” on the 7th he pretty much fell away. On the 8th he barely opened his eyes. He smiled at me a few times when I told a joke so I knew he could hear me. It was as good a good-bye as anyone could ask for and I know that Hospice made that possible.

Thank you all for your support. Even now, 2.5 months I think about him every day. The wedding will be tough but I know he’ll be there. I mean, it’s going to be at an old Gin distillery (his favorite drink) so I know he won’t miss it:)

I appreciate all of your support.

xB

April 26, 2017 at 8:22 am  #1290646    
catdander forum moderator
catdander forum moderator

Hi xB,

Thank you for coming back to post. I’m so sorry for your loss. I know you will continue to think about him often. I doubt too many days go by without thinking of my dad who died in 1970, we’ll always be their little girls. I love the wedding venue, so appropriate for celebrating.

Best of luck,
Janine

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