Update on my Dad -- this disease is garbage
Dad is not doing well. He is very weak and gets out of breath by getting up and being transferred to his wheel chair. This causes breathless episodes that scare him. Last week he had two episodes of breahlessness at the oncologists office, so they sent him home with oxygen, after pulling fluid off his lungs.
These breathelss episodes terrify Dad. Yesterday Mom wanted him to eat before his appointment, she said she rushed him, and he got sick to his stomach. Missed his appointment. Said he was partly nervous about the appointment. I don't think it is the appointment itself but the fact that he has to get up, be transfereed to the chair, then the car, then inside the building. All he wants to do right now is lay down and be at home. He doesn't want to get out.
The Dr. was worried that he may be too weak for treatment when he started the Cabo. But he has been doing well side effect wise. He has now been on it 6 weeks. The problem is his weakness. And his lack of appetite. He hasn't been the same since his first hospitilization for GI tract bleeding, which turned out to be due to NSAIDs. He was hospitalized again a week and a half later, for constipation (due to his opiates perscribed for pain)/
The cabozantinib is working on his bone mets, our Oncologist thinks. He checks by feeling his main met site on his ribs.
Oncologist said he wanted him on the Cabo a couple more weeks when we were there last week, and then he would evaluate and see if we needed to switch to immunotherapy.
I don't see how he is going to survive not eathing, my only hope I guess is that he will have a breakthrough on this drug and it will destroy his bone mets. Mom just texted and said Dad feels a lot better today. He didn't eat last night and has had only Gatoraide today.
Mom says he has only drank Gatorade the past day and a half.
I will not give up on him.
Comments
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Prayers!
It is total garbage!! I am praying for your dad and your family. I’m also praying for the doctor for wisdom as he continues to treat your father. It seems like we are constantly on a roller coaster - hopefully your dad will be on his way back up again. Good luck!
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Thanks Mark, means a lot!
Thanks Mark, means a lot!
Can one come back from this level of weakness?
Doesn't walk, stays in bed, sleeps, drinks gatorade, takes his pain meds, watches "Last Man Standing". That's it!
Can people turn it around from not eating and not being able to get around, to eating better and walking so that they can be further treated?
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I have read some pretty
I have read some pretty amazing stories from other cancer surviors who have been able to overcome the most dire of situations. I can only imagine how difficult things are right now for your father - it can be so overwhelming. I believe that anything is possible and that gives me hope. I know this sounds so cliche but you can only take this journey one day at a time. I pray that he keeps fighting and relies on his support system to help carry him through this. And remind him that new episodes of "Last Man Standing" are coming out soon - that is something positive to look foward to
. Best of luck and prayers.0 -
First of all, I can hear your
First of all, I can hear your concern and panic about your father's condition and for what you ALL are going through I am truly sorry.
Yes, you can go quite awhile without food, but not without liquids. So see if he wants popsicles, jello, (not ice cream=too much phelgm) any kind of liquid.
Between the cancer, the drugs and the treatments his appetite and digestion is probably not good, to be expected. The more he eats, the more he may be uncomfortable and constipated, I have learned.
I would ask if his doctor could order a home health team, which is a RN and aide to assist and support you all. They are experts in this kind of home care.
Let me know how things are going and if you get extra help.
Serenity prayer: (God) Grant me the SERENITY to accept the things I cannot change,
the COURAGE to change the things I can
and the WISDOM to know the difference.
Hope your father gets the extra help.
Healing hugs for all,
Jan
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My prayer is with your dad, i
My prayer is with your dad, i was told by a doctor that cannibis oil can help with apetite as it ease the pain and can help with anxiety and side effects. I am not suggesting it as I have never try it.perhaps ot1hers can comment on it.
Also, I thinkat this point, it isnimportant to give him whatever he is willing to eat, even if it is onlyna bite.Since he needs tbe strength to continue with the treatmsnt. All the best.
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Hope your Dad
Is better soon. It is so difficult to see our loved ones to through this. I pray for strength and hope for your whole family.
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Thanks so much to you all,
Thanks so much to all for your comments and care!
We were excited that Dad drank two Boosts yesterday with the benecalorie mixed in. about 1600 calories.
Dad just told Mom if he isn't feeling better by tomorrow, to call the Ambulance.
Honestly that wouldn't be the worst thing by a long shot. He was suppose to have a cardiologist appointment tomorrow.
His Oncologist, and all his Dr. are right there in that center within easy walking distance. The Sarah Cannon Cancer Center and Centennial Hosptial. So hopefully the proximity would allow for the Oncologist to do his thing since Dad missed his last Thursday appointment due to illness.
So these Oncs come by and take care of their patients in the Hospital/ERand do evaluations and med adjustment and all that? Or do they stickstrictly to an appointment schedule?
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To answer your question:
To answer your question: When my husband went to ER, they sometimes called in a specialist, or at least consulted by phone. Admission was determined by the emergency room physician. Once admitted we saw physicians who are on staff at the hospital. Personally I like the old days where your own physician saw you. I have no idea how it works at your medical center.
I do think your dad needs to have his symptoms and side effects of this disease and medications handled by someone so that he can have the best quality of life.
I remember reading posts where someone said their spouse slept 20 hours a day. Mine did too, for a brief period of time. Everything needs to be addressed from fatigue, depression, diarrhea, constipation, pain, loss of appetite, weight loss etc.. The list goes on and on. If the oncologist is not a phone call away, then you need some help. We had a great primary care doctor who helped too. You do have to tell the oncologist everything in case there needs to be changes to his dosage of meds. Also, any new prescription we always call the oncologist and ask if okay.
My husband was told "think of food as medicine". That made alot of sense to him so he tried very hard to eat. When it was bad, we weren't concerned about a balanced diet. Frankly it was anything...and he really liked ice cream with the Boost. Milkshakes. I think whatever works.
Find out if there is an online patient portal where you can communicate what's going on and get advice. Lots of us deal with the oncology nurse practitioners.
I hope your dad continues to feel better.
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My dad also has kidney cancer
My dad also has kidney cancer. Two months ago he was so weak he could barely get out of bed. He slept for 18 hours a day and refused to eat. After he started his immunotherapy things started getting better and now he feels better then he has even before he was diagnosed. His appetite is great and he was able to go back to work. Things can definitely turn around.
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You've got the Oncologist
You've got the Oncologist saying, according to my Mom "He thinks this is other problems, not the Cancer" (via text) and that tests are showing a thyroid issue.
but the lung specialist saw him, doesn't know if it's a lot of fluid or a tumor? And then the social worker is coming in handing us hospice materials.
So I dunno. I am still holding out hope the oncologist disagrees.
I'm upset but I am far from hysterical. All this callouses you so much.
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Mom just talked to Oncologist
Mom just talked to Oncologist.
I brought her lunch at the hospital, and that's when the social worker/hospice talk when down, so I left there reeling. Yet, still with the knowledge that the Cancer doc hasn't told us he isn't treatable.
She said our Oncologist came in and said that we are definitely not ready for hospice. He is still treatable, and his Cabo is working (they just did another CT). He wants to get these issues resolved so that he can continue treatment.
He explained that there are many different Dr.'s in the ER, that don't know the overall cancer treatment plan & that there are also many people who just give up at his level of illness because they don't know any better, and want hospice materials.
Good god the friggin rollercoaster this crap puts you on. From death to survival in the past hour.
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LeeAllen, I know how
LeeAllen, I know how confusing and disturbing all this can be at times.
What I wonder, what does your father want? Does he even know?
Hospitalists are MDs who only work in hospitals and are assigned to see patients everyday, then consult with their outside specialists in most hospitals. Unless your doctors want to see their own patients and are on staff at that hospital. Trust me, a whole lot of consulting goes on behind the scenes.
Again, I wouldn't worry about as much about FOOD or meals, per se, rather nutrients and fluids until he's ready and able to eat. Ask yourself and your mother .. is his eating more for you to make you happy? Or does he express a desire to eat again to get better?
I worked in hospice so I'd be happy to answer any questions. Know that in order that the social worker would come discuss hospice benefits, she/he would need an order from his treating physician. There has to be certain criteria to be met before an order is placed. So, was it the hospice social worker, or the hospital social worker simply inquiring if your father/mother desire to speak to hospice??
And know that you can start home health nursing services. Again it takes an MD's order. Or home hospice can be started if and when all are aboard, but that does not mean someone is actively dying, but done with treatment due to lack of quality of life or its no longer working. If he improves and wants more treatment, hospice goes away with a simple signature. I am sure either home health or hospice would offer your father and mother extra care and assistance. It is something to think about.
Keep us posted. I am here to support YOU!
Sending you a special hug,
Jan
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It was a few weeks. We wouldLeeAllen said:Thanks so much CSmith. How
Thanks so much CSmith. How long did he refuse food?
It was a few weeks. We would be lucky if we got him to eat a few spoonfools of broth everyday. He had to get iv fluids because he was so dehydrated. Then one day he just started feeling better. Hang in there.
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It was the lung doctor that
It was the lung doctor that noted Dad’s overall weakness that first spoke to my Mom about hospice. He is the one who sent the social worker. Then he consulted with our oncologist. Immediately then, our oncologist came in and first thing he said with no prompting was “we aren’t ready for hospice, he’s still treatable and his cancer med is working and we haven’t even got to immunotherapy yet.”
Mom said Dad was not happy about the hospice talk and was clearly pleased when our Dr. Said otherwise. So he isn’t done fighting yet.
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Not sure if you get my
Not sure if you get my response before your dad has his fluid drained. BUT let him know whenever any of us are going to have something intrusive or painful done on us, breathe IN through the nose and then blow the air out
S L O W L Y with teeth apart as if we're going to make a lit candle ficker but not be blown out.
I have had many things done and not felt a thing.You have to TIME IT to the procedure. Let the person know you want to time the breathing technique so you work as a team. It always works for me!
Healing hugs of care!
Jan
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I re-read what you said, Jan
I re-read what you said, Jan and it was the hospital's social worker sent by the lung doctor. Sorry, it's been quite a day!
Dad is having fuid drained from his lung itself tomorrow on orders from our Oncologist and Mom said he named 4 things we are going to get taken care of, and Dad will be given fluids and nutrients through a feeding tube. He will likely be here to the weekend or later.
Our Oncologst has really taken charge of his care here at Sarah Cannon. This is what I expected to get but didn't get at Vanderbilt with his first oncologist
(long story, first onc at Vandy said cancer of unknown primary, offered chemo, current onc was 2nd opinion, and said Kidney cancer, treat with TKI and this onc is the founder of the cancer center we are at, which is the largest private research center in the country, Sarah Cannon Cancer Center)
THANK YOU SO MUCH JAN YOU ARE THE BEST!!!
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HI again,
HI again,
Yes, I am nearly 5 years NED. I stay on to support others.
I was a hospice social worker at end of my career. So folks should not be scared of Hospice. It is a great benefit most do not know that they have. It doesn't always mean you are actively dying, which scares families. It is just too bad his lung doc didn't communicate with the oncologist before he sent the social worker. He could've asked about home health nursing services. Do you know if he'll get home health care when he's discharged? Again, certain criteria needs to be met.
Keep me informed!
Jan
Be well, Jan
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