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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. 

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 205
Joined: Oct 2017

For your loss-BDE-may he rest in peace-June

icemantoo's picture
icemantoo
Posts: 3273
Joined: Jan 2010

Your family did their best and were there for him in the end. That is important 

 

 

icemantoo

Retcenturion's picture
Retcenturion
Posts: 240
Joined: Mar 2017

Lee sorry to hear about your dad. May you and your loved ones have some peace in the coming days.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Lee, I'm so sorry for the loss of your Dad.  By the way you talked and wrote about him, I could tell he was a very special person.  I pray that the memories you have of him help carry you through this difficult time.  God's peace and strength to you and your family.

Take care,

Stub

a_oaklee
Posts: 523
Joined: Nov 2013

I'm sorry to hear that you lost your Dad.  Your mom and you were so helpful and devoted to him during this very difficult time.  You did everything you could.  I'm very sorry for your loss.

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

Sorry to hear your sad news

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Don't know what else to say.

Stay strong and hang on to the memories.

Fred

daisybud's picture
daisybud
Posts: 486
Joined: Jan 2016

Kim

Manufred's picture
Manufred
Posts: 241
Joined: May 2017

Lee, I don't know what else to say.

Stay strong and keep the memories.

Best Wishes,

Fred

donna_lee's picture
donna_lee
Posts: 955
Joined: Feb 2009

to you and the family and your friends.  It's tough to lose someone...as of now, my hubby and I are the head of the family!  And cancer is a crappy way to go.

Hugs to you all,

donna_lee

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

I'm so sorry your father lost his battle with this demon. He'll always be with high in your heart. I hope that when you remember him, you remember good times and the happy moments you shared. May his memory be for a blessing. 

paintergrl's picture
paintergrl
Posts: 47
Joined: May 2018

I'm so sorry for your loss. Prayers for peace for your family.

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

I am also so very sorry to hear this news. We could all tell how close you were and how much you loved him. You can forever hold that dear to your heart.

Wehavenotimeatall
Posts: 489
Joined: Aug 2017

to you and your family

the pain is unbearable 

i wiish you strength to get through these days

Your Daddy is suffering no more

Rest in Peace

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I'm so sorry for your loss :( Sending hugs

LMCRJB13's picture
LMCRJB13
Posts: 84
Joined: Oct 2017

I too am so very sorry for your loss.  Stay strong - thinking of you and your family.

Ryan

Amy_Jo's picture
Amy_Jo
Posts: 70
Joined: Apr 2018

LeeAllen 

I'm so sorry to hear your news. I hope you are holding up well. I know how devastating loss of a love one can be. Breaks my heart unfortunately we all must travel that path one day. Know that you were such a good guy for your Dad all your love and support. I'm praying for you and your family. Remember the good times laughs and special times you shared they are precious at times like this. 

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

Thanks everybody. I didn't mean to ghost out, but I've taken a break from CANCER for just a little while. 

 

I will be back to offer support to whomever I can, especially those whose stories match closest to my Dad's. 

 

The Cabo was working really well, Kidney tumor was so small it could barely be seen on scans. His primary tumor was small to begin with, which could have led to a very good treatment outcome had we got him on the Cabo earlier. We wasted a lot of time w the other Oncologst that gave him the unknown primary diagnosis and, of course Dad should have pursued his lack-of-appetite symptom months before he did. 

 

The cancer in his bones also shrunk remarkably. From a lemon sized tumor in his side/back, to barely there! By the time he died, his cancer was very much under control. 

It's almost worse knowing how effective the medicine was, and HOW GODDAMNED CLOSE we were to recovery, vs. a siutation of being so overrun with cancer that nothing could be done. At least, with the latter, you can't look back with regret. 

 

It was the 3-4 major medical issues the cancer had caused that led to his death. His onc called them "non malignant issues". His lung was worse that anyone knew, until we got him in the ER. Turns out he DID have lung mets. The Cabo had just shrunlk them to almost nothing. Those lung mets were biopsied and he finally got his officaly RCC diagnosis 2 days before he died (Prior to that Doc was 90+% sure). 

 

I should have had him in the ER 3 weeks before I did! 

 

I should have went to the FIRST Onc appointment with them, and asked the questions I later asked, that eventually led to better treatment. It was precious time wasted. Had he started Cabo in mid April instead of late June, he'd likely be alive and recovering. 

JoeyZ's picture
JoeyZ
Posts: 210
Joined: Mar 2018

You can't second guess yourself at this point. It's just torturing yourself. I've been doing that in regards to my Cabo treatment. What if this, what if that....you can go nuts doing that. I'm sorry and I know it's really hard. You ALL did the best you could with what you had to work with at the time. You just cannot ask for more than that. Hope things get easier for you soon, and I don't think anyone expected you to want to hang around here. Bless your heart and I hope you're all doing ok.

a_oaklee
Posts: 523
Joined: Nov 2013

I think what you are going through is a normal part of grieving.  I went through the same thing when my mother passed away.  I have finally found some peace of mind.  Every time you start the "should a, could a, would a" regrets, you have to follow up those thoughts with:  I did my very best.  I was there with him.  He knew how much he was loved.  This is the way you move on, being kind to yourself.

It's absolutely true that you can disappear from this site if it makes you feel better.  Whatever is right for you is what you should do, but you are most welcome here.  Caregivers, loved ones, family, friends are always welcome.  I want you to know that your posts meant alot to me.  Be well.  

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