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Frustrated...

UncleBuddy
Posts: 1019
Joined: Aug 2013

I took my brother to the oncologist on Thursday. They want him to take a break for a few weeks to give his heart a chance to become adjusted to the digoxin. In 4 weeks they will figure out if his heart can take anymore chemo. They were considering putting him on irinotecan, but it can cause diarreah and he already has diarreah because of the rectal surgery he had. I'm not sure if he's run out of chemo options. He was hoping for more chemo, thinking that it would buy him more time. 

What happens when the chemo stops? I am guessing the tumors will grow, but would this be the time when they call in hospice? We go to the cariologist on Thursday and I have to make an appointment for him to have a CT scan in 3 weeks. This really knocked the wind out of my saisl! Frown

Lin

LindaK.
Posts: 490
Joined: Apr 2013

LIn, my husband is at the ' out of chemo options'  his body wouldnotcooperate with folfiri (irinotecan) is part of that cocktail, vectibix with folfiri and vectibix alone.  They are some of the worst words you will hear from your oncologist.  It's hard for them to say them, thegood oncologists anyway.  Myhusband's tumors on or in his lymph nodes continued to grow while on his last 2 chemo sessions this summer.  Poor guy ended up in the hospital twice for 10 and 11 days about 6 days apart. He's been on home hospice now for almost 3 weeks, which is quite different than being in active treatment.  Somedays he says he's waiting around to die.  His pain meds have been upped each week and he's had two episodes at home that scared the crap out of me.  Hospice support is not so great on the weekends.  We have been toldnot to call 911, but then told on a Sunday night on the phone by the 1 on call nurse that was too lazy to come out that I should call 911 and go through the ED.  We ended up getting through the episode on our own, which left me pretty numb and feeling dumped by hospice.  None of it is easy, but I wish your brother better news than we got.  Hang in there, it's pretty much all we can do, right?

 

Linda

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I am so sorry to hear that you have had such difficulties with in home hospice care.  My experience with them when my sister was dying was far superior not only medically but with compassion for the family as well.  Hospice care is to make the patient as physically and emotionally comfortable as possible.

I would suggest that you call the hospice care office and speak with whoever is in charge to discuss these issues.  They may not be aware that they have less than adequate persons handling these things.

As for calling 911, this should have been something discussed at the time you signed up for hospice.  It is not that you can't call them.  It is whether or not your loved one desires to have life saving methods attempted.  Once you call 911, they are obliged to take the patient to the ER.

Attending a loved one who is living their last days is not easy for sure.  It takes an inner strenght to put aside your own anguish.  If you find that all of this is too much for you, you need to talk with your hospice case worker to see what other services might be available to help.

Prayers for you and your hubby,

Marie who loves kitties

UncleBuddy
Posts: 1019
Joined: Aug 2013

We'll have to see what the cardiologist thinks on Thursday. I'm not sure if he has any other options. They were going to put him on irinotecan, but it can cause diarreah and he has diarreah now even with Lomotil. He has been telling the doctor all along that he doesnt have diarreah because his stools had some flaky pieces in it, but it's liquid with some flakes, so it's diarreah. I'm sorry to hear your troubles with Hospice. I am hoping when the time comes, he'll have better luck. 

Yes, haging in there is about all we can do. :)

Lin

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

I am so sorry that the news from the onc was not better.

It is probable that with stopping the chemo, the tumors will grow.  How rapidly depends on the type.

Hospice can be called in any time after the treating physician feels the patient has less than 6 months to live and has stopped active treatment for the disease.  In some cases the patient survives to the 6 month date, then the physician can renew the Hospice request. 

During Hospice care the patient can continue to receive care from physicians for other medical issues, in your brother's case for his heart issues.

I hope that during this time of no chemo that there is slow or no growth and that the heart improves. 

Hugs and love to your brother, you and your family

Marie who loves kitties

UncleBuddy
Posts: 1019
Joined: Aug 2013

From what I understand, they're not  rapidly growing tumors, but I am sure they will grow now that he has stopped chemo. I wonder if there's any other drugs out there that he can take. I guess this is all a discussion I need to have on Thursday.

 The cardiologist put him on Digoxin to help strengthen the heart. We;ll see how that goes. I'm trying to get him to walk to help build up his heart muscle, but he is so used to just lazing around, it's hard to get him to do it. He won't eat any better, either. He tells me he has to live, so I can't fault him for that. I am just worried that his sodium intake is going to cause more fluid around the heart. With his intellectual disability, it's hard to get him to do things. He is like a child at times and refuses to listen. He refuses to eat veggies at all. He tells me he doesn't like them . On top of all this, dad had cataract surgery on both eyes, so he's been complaining about everything. He doesn't like to depend on us for everything, but he has to for now. His dementia is getting to the point that we have to have the talk. He had been driving up until now, but my sister and I both feel his memory is not sharp enough anymore. He is not happy as it is that he can't drive becuase of the cataract surgery, wait until we tell him he can't drive. I think I'm going to bring him in to his internist and let him check him over and talk to him.

Lin

Lovekitties's picture
Lovekitties
Posts: 3327
Joined: Jan 2010

If the internist is the one who diagnosed the dementia, ask him if he will pull your Dad's driving license, rather than it being you and your sister.

It may be easier for all of you to live with a third party intervention on the subject.

Marie who loves kitties

UncleBuddy
Posts: 1019
Joined: Aug 2013

I think it's the best option. This way we're not the bad guys and he respects his doctor, so I think it'll be a good thing.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

many turn to alternatives. The Gerson a Diet, cannabis, detoxing...

I'm starting to take iodine, heard it has great reviews for stopping cancer growth. Looking into dosage now.  

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother is not willing to change his diet OR put in an effort to exercise. I have tried, but it's useless. he is intellectually disabled and is like a child at times. He digs in his heels and refuses to help himself. I've gone so far as to take him to Weight Watchers, went on the diet with him, but his philosophy is that while he is still alive, he wants to enjoy his food. It is what it is. I am not going to argue with him because it has to be his decision. But I agree, I think diet probably has a lot of positive effects. It can't hurt!

Lin

Ladylacy
Posts: 769
Joined: Apr 2012

While my husband doesn't have this type of cancer, I have been reading this board.  I just wanted to say in-home hospice can be for more than 6 months -- in-patient hospice is only for 6 months we were told.  My husband has been on in-home hospice since September 2013 and we have had no problems with hospice.  In fact, recently we have had two very scary events to happen on the week-end and the nurse on call was with us as soon as she could get to the house.  They are great.  I know when my husband went on hospice, we were told up front, not to call 911 first to call hospice and they would tell us what to do.  We were also told by hospice to report any problems we had with any of the hospice personnel.

My husband's first primary was laryngeal cancer, second primary was at the cervical of the esophagus, which is rare, and then spread to his right lung.  After 70 rounds of radiation, rounds of chemo and surgery, he said no more.  He preferred quality or quantity of life and that was almost 2 years ago. 

Wishing you the best -- Sharon

 

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother also chooses quality of life, as he sees it. I can't convince him to do any diet or lifestyle changes. We will see on Thursday whether they will be able to continue chemo at all. He thinks chemo is the magic cure.

I wish your husband well. I hope he is enjoying some quality of life.

Lin

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

I was out of options, too, and I even tried dendritic cell therapy ( see my previous posts) and a clinical trial. My onc said to try stivarga, and I said why not, but I wasn't enthusiastic. It comes in pill form, like xeloda.  Irinotecan didn't work for me, and made me constipated btw. 

I blew off the stivarga and took it cavalierly - I even stopped it for a week to go to the beach!  but for whatever reason, it is working for me. My CEA dropped 400 points after like two weeks of taking it.  I consider this a stay of execution and maybe it will buy me more time on this earth, which is what I want.  I broke out in a horrible full body  rash so I am on a lower dose, working back up to the standard 3 pills a day. 

So maybe he can try stivarga? He seems like a really hardy character, from what youve written about him. Unless the oncs know something will hurt him, why not just give a new chemo a try? Even irinotecan.

Good luck to both of you

Karin

UncleBuddy
Posts: 1019
Joined: Aug 2013

Thanks for the heads up on the stivarga. I'll ask about it. They are worried about his heart. If it causes his diarreah to get worse, it will affect his heart. The doctors are worried about heart failure since his heart is only functioning at 25%. 

We go to the cardiologist on Thursday, so we'll see what he has to say.

Lin

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

Ive dealt with home hospice program with my mother-in-law and my parents. They were wonderful 24 hours a day. They supported the family as much as the patient. We also were told not to call 911. I couldn't have done without them. I'm so sorry you're all in this difficult situation. My prayers go out to everyone. 

Yolanda

UncleBuddy
Posts: 1019
Joined: Aug 2013

I'm glad to see that you're doing well. Keep it up!

Lin

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