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Update on my Dad -- this disease is garbage

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

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. 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

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!

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

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? 

 

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

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.

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

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

lobbyist0724's picture
lobbyist0724
Posts: 376
Joined: Sep 2016

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.

APny's picture
APny
Posts: 1902
Joined: Mar 2014

I'm so sorry your dad is going through this and yes, this disease is total garbage! Have you tried giving him Ensure (or anything similar)? They come in different flavors and have nutrients. It's like drinking a thick shake.

Deanie0916
Posts: 234
Joined: Nov 2016

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.

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

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?

a_oaklee
Posts: 414
Joined: Nov 2013

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.

Csmith823
Posts: 6
Joined: May 2018

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.  

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Thanks so much CSmith. How long did he refuse food?

Csmith823
Posts: 6
Joined: May 2018

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. 

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

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.

LeeAllen's picture
LeeAllen
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Joined: Jun 2018

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.

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

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

 

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

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. 

LeeAllen's picture
LeeAllen
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Joined: Jun 2018

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!!!

Jan4you's picture
Jan4you
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Joined: Oct 2013

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

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Jan I figured you for a caretaker. Are you a survivor yourself? 

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

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

a_oaklee
Posts: 414
Joined: Nov 2013

I just want to say that you would be surprised by the many doctors who think there is no treatment for RCC.  Still, I would think a lung specialist would know more.  

I hope you share with your dad how people are surviving many years here and on SP.  I think when you are newly diagnosed and just beginning treatment is the hardest time  emotionally.  There is so much to learn.  

I would also like to add that I truly enjoy the visits from social workers.  But they aren't all the same.  They should be a very good resource for you.  

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

I just received a text from my mother.

'Tests' (I am assuming the CT Dad did Monday) showed Dad's bone met's have shrunk 'way down' and that the spot on his kidney is barely there!!!!

Dad's troubles stem from fluid in his left lungs.

The Lung Dr. (how he would know, I have no idea) said that Dad's issues can be chalked up to Cabo side effects, except for the lung fluid.

We still have to get this lung deal taken care of, but that news about the cancer itself...WOW.

They handed us hospice materials twice yesterday (from this same lung doc).

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

Be a little comforting to all of you.  Never give up hope- sometimes in the medical field when there are multiple Dr's you get multiple opinions-Not always good.  Always be your own advocate- this is surely good new, may it continue. June

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

So glad to hear the meds are working. I hope your Dad is encouraged by the news. I pray your Dad stays strong mentally, because the body will follow. I also hope he re-gains his physical strength. Take care.

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Thanks AnnissaP and Gtng!

 

He has fluid IN a lung, as opposed to outside. He has had fluid outside of his lungs pulled 3 times since May. 

 

They pulled a bunch of it out and they had it slowly pulling out overnight. Looks like brake fluid. 

 

No wonder he'd get so out of breath from merely standing up or walking a short distance with his walker! He had a lung that was basically drowned! 

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

Well glad to know the treatment is working on the cancer. YAAY!

Fluid in lungs is serious too. Often there is a battle between the quality of life and effects of both cancer and its treatment. See if the pulmonologist knows what is causing the fluid and if it will continue fillling up or stop. 

Remember, there also is a spiritual journey doctors cannot predict!

But be glad~yAAY!

Healing hugs,

Jan

 

lobbyist0724's picture
lobbyist0724
Posts: 376
Joined: Sep 2016

Just like what the Onc was saying, the battle is not done. I am from Canada, in our Canadian forum, there is a member who has stage 4 RCC and is still NED for over 15 years! Also, make sure you consult with the primary treatment team for advice since the docs and nurses from the treatment team know about the potential side effects from the treatment and will not mistaken it as something else. Sending good karma.

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Well the speech and throat lady has found that Dad is too weak to swallow. It is taking him so long he is just giving up trying to eat food bites. 

And there was a small gap in his esophagus they hope the remedied with the recent lung fluid procedure. 

He has swallowing exercises and Dr. will talk to him about a feeding tube. Mom says they are in for a long stay in the hospital. 

Dad hasn't had nutrition all week, so of course he is even weaker with all he has been through! 

Mom then said he has to make up his mind about the tube. I asked her if the feeding tube would allow him to gain stregnth to then eat on his own, and she says the speech pathologist thought so, so then I said "Well what is there to make a decision about then since this is temporary!" 

We were so excited about the Cabo working so well, but we have such a long road ahead! 

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

Aww.. this is a process, a journey, not only through the medical/treatement but lessons we all need to learn.

Right now the focus is on his comfort, breathing, swallowing issues.

Are they giving him IV fluids? Again, don't worry so much about his eating than his regaining his strength.  He has some serious issues to overcome first, right? Feeding tubes are not always comfy but necessary. 

Healing Hugs,

Jan

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

They have been giving him IV fluids too. 

He's pretty lucid through all this except when he is sleeping. Heh. of course. He seems to look and be better to me each day he is here. But he arrived awfully sick. 

Mom and Dad were UP yesterday when they found out the drugs are working and the CT scan looked awesome, then they found out about the feeding tube and that has knocked the wind out of their sails. 

My family doesn't know about medical stuff, I think they think a feeding tube makes him into Darth Vadar or something. Like it's akin to keeping a vegetable alive. 

My aunt is a nurse and she explained it to mom. 

One thing we ALL need to do is not regard any hospitcal info as gospel except what our Oncologist says. He is the one running the show. He's in and out of there all day checking up on him, and he comes in and summerized everything that is going on and our plan moving forward. 

Well, our Onc. Doc just came in. Said no feeing tube. We are going to do a liquid diet and Dad has to sit up while eating. 

LeeAllen's picture
LeeAllen
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To elaborate, our Oncologist doesn't want to put in a feeding tube simply due to the results of a swallow test. Might do it later. (his suggestion was the peg tube) but he wants Dad to sit up and eat. 

Amy_Jo's picture
Amy_Jo
Posts: 69
Joined: Apr 2018

LeeAllen,

I really hate this disease as well it's cruel. However comebacks are possible. A few months ago I was in a bad place my Mets on my spine had deteriorated my vertabrae so bad I could not walk just trying to reposition my self in bed was excruciating. I had back surgery and started treatment. I have been doing well my most recent scans show my treatment is working. Tell your Dad I love last Man standing I'm looking forward to the new episodes. I hope your Dad gets stronger I had a nephrectomy Left kidney 2 PE's kyphoplasty plasty to my back I just kept praying for strength and stayed positive. I'm sure your Dad is exhausted just be his strength and encourage him to fight. I was beginning to loose hope my mom was a big inspiration for me. Sending up prayers for you and your family. Can I ask your Dad's name so I can pray for him ? 

marosa's picture
marosa
Posts: 327
Joined: Feb 2015

to get better and stronger and that he can go on treatment and overcome this very trying times.  Best wishes for your dad, your mom and you.

Jan4you's picture
Jan4you
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Joined: Oct 2013

YAAAY!! See? Take all this a moment at a time. Helps to be well informed.

Hope his swallowing issues improves as his physical well being.

Now BREATHE! We're here for you as you can see, Lee!

Hugs, Jan

shepp
Posts: 11
Joined: Aug 2017

I'm in considerably better shape than your Dad, but dealng with loss of appetite and nausea due to Cabo is a constant struggle for me.

I'd discuss with your father's oncologist whether he thinks dose reduction and/or treatment vacations would help. My doctor is fine with my skipping doses for a couple days (Cabo has a long half-life, so treatment isn't really effected) and it does seem to help me.

But hey, my main tumor has shrunk by about a third and my bone mets are stable, even necrotic, so at least the stuff works. (For 700 bucks a pill, it should.)

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Thanks everybody. Last week Amy_Jo I prayed for you at Eucharist. Forgot your name but I just envisioned your picture! You are around the same age as my wife (pictured in my photo). I just hate that you are having to deal with this. 

 

They are giving Dad a scope today to see if he has a lung tumor. No tumor showed on the CT they did last week and his fluid tested negative as well so I guess they just want to make absolutely sure. He's had so much trouble with that one lung and fluid on the outside and inside. 

 

They make due surgery later today to scrape his lungs too. 

 

Dad gets depressed in the hospital. The lung doc seemed to think he was better yesterday. Dad says he can't really tell either way due to the drugs. 

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

No lung tumor. He has scar tissue in his lung that is making it harder to expand and take in oxygen. They are going to decide how to treat that. 

 

The internet isn't very optimistic about lung scar tissue. How don't know how much or anything just yet. 

Amy_Jo's picture
Amy_Jo
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Joined: Apr 2018

Just wanted you to know I was thinking about you and your Dad I hope he is doing better. Prayers for strength and healing for you both. 

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Thanks so much Amy_Jo, he is having a pacemaker put in in today. He had a several heart episodes in the past. It's just one thing after the other. 

 

We have an inpatient rehab center to send him to when he gets out of the hospital. 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
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To be dealing with.  How lucky your dad is to have such a good support system.  Hope this is the beginning of healing-June

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

To be dealing with.  How lucky your dad is to have such a good support system.  Hope this is the beginning of healing-June

LeeAllen's picture
LeeAllen
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Joined: Jun 2018

Mom just said he's not doing well. Won't let her leave his side. Nurses are getting anxiety meds. 

 

Makes me mad, I could tell how anxious he was last week. What's the harm of giving him something for that?  

I have panic and anxiety disorder so I know how bad those episodes can get. On top of everyting else he is going through. 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
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Joined: Oct 2017

Horrible I know from experience.  Unless he's a fall risk I'm with you.  It's amazing what anti anxiety meds can gm-good luck-June

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Dad was in some half panicked/half sleep state that looks to be the state that people go into when they are dramatically dying on movies and television. 

 

It was a distrubing scene. I guess I can just hope that he is just extremely panicked.  

AnnissaP's picture
AnnissaP
Posts: 617
Joined: Sep 2017

So sorry to hear your Dad is having such a tough time. I hope he is able to find peace because it will help him tremendously if he can relax. I really hope he feels better.

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

Oh, Lee, thanks for these updates, but how heartbreaking for you all! It is hard to know the effects of medications and treatments. See if you can get him to talk about any happy or fulfilling memory to move his mind off his physical state. Remind him he's safe and under good care. But he may be feeling a tsunamia of chemical changes in the brain coming in waves. So many surprises and challenges in this journey!

But as you can see, Lee, WE are here for YOU, for your dad and family~ Please let them know how many of us CARE and will walk this journey along side of you all!

Keep taking care of you too! We've got your back!

Healing Hugs, Jan

LeeAllen's picture
LeeAllen
Posts: 40
Joined: Jun 2018

Just lost Dad

MarkDavid18's picture
MarkDavid18
Posts: 57
Joined: May 2018

Sending prayers for you and your family. I am so sorry for your loss. 

Jan4you's picture
Jan4you
Posts: 1308
Joined: Oct 2013

OH Lee, I am so sorry for you, mom and others! Dad is fine now. Happy and whole=cancer FREEE!

Here for you. I'll be thinking of you all!

Healing hugs, Jan

Canadian Sandy's picture
Canadian Sandy
Posts: 476
Joined: Jul 2016

Sorry for your loss. Hugs to all of you.

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