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Hospice And Tarceva


Bill

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First, I want to sincerely thank everyone for the kind words and support in response to Fay's post about my wife. Her health condition has significantly deteriorated over the past week. Her condition is stable at this writing but stable at a much lower level than a week ago. She started Tarceva 150mg. on Thursday ( 3/3 ). Consensus opinion amongst her healthcare providers is that barring a miracle recovery with Tarceva she has only a few weeks to live at most and that hospice is in order. A hospital clinical case manager mentioned to me that she thought that my wife could enter a hospice program and continue taking Tarceva without violating hospice no-treatment policy. She based this on Tarceva being an ORAL medication. Is this true ? Also, can anybody give a brief description of what a typical at-home hospice program would provide. I assume that pain meds and such would still have to come from the med onc and other treating physicians ?

Thanks again.

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It's good to hear from you, Bill. I want to express, again, with all my heart how truly sorry I am that your wife is having such a hard time. My heart aches for both of you.

I'm sorry I can't help with your Tarceva question.

Give you wife an extra hug from me, and here's one for you, too.

((((((((((((((BILL)))))))))))))

Love,

Peggy

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Bill,

I am deeply saddened by the news of your wife's rapid decline. You are a wonderful husband and caregiver. I don't know much about the hospice rules, perhaps Ry could be of some help.

Will keep you and your wife in my thoughts and prayers.

TAnn

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Bill,

First off let me say how sorry I am to hear of your wife's condition.

I'm on hospice care and have been for over a year now (I went on hospice the day I decided not to activily treat my cancer). Hospice provides me with any meds that have to do with my physical comfort and well being such as my vicoden, tesslon pearls and robituson DM,(for my cough), laxitives (for the constipation caused by the vicoden) and ativan (anti-anxiety). Some other meds I take such as Flo-max (for protrate) and megace (for appitite) come through my regular health care provider (in my case the VA). A lot will depend on your insurance and your hospice provider. For instance, medical/medicade/medicare patients get their oxygen through my hospice, but, since I'm in the VA system I have to go through them to get it.

There are a lot of different hospice organizations out there and each one is a little different in what it will, and will not provide so be sure to ask questions.

Dean

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Bill,

I am so sorry to hear of your wife's condition.

As for hospice, Bob got his meds that were for comfort and pain from them. They were delivered from a local pharmacy to the door. He recieved Morphine in 2 forms, xanax for restlessness, some kind of laxative, as Dean Carl mentioned because of the pain meds.

His other meds were still prescribed from his regular docs. Tarceva was mentioned but Bob decided not to take it.

They also got us a hospital bed on the same day we ordered it.

The hospice nurses were there several times a week. Since Bob went so quickly it was almost every day.

I can't say enough about how wonderful they were to us. What a tremendous service to families they are!

My prayers are with you.

Nell

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Bill,

I am so sorry to read the news about your wife. I know there are miracles and I pray one is headed your way.

As for Tarceva-- get the thirty days supply (or more if you can) before signing up for Hospice (if that is what you decide to do).

The Tarceva is to be paid from your health provider under separate terms from hospice care. Hospice pays for pain meds and other palliative meds as others have said.

If Tarceva works then you can always leave hospice care IF the insurance company won't let you have hospice AND Tarceva--but IF you need both then fight for both...but you can always go in and out of hospice care. There's way around nearly everything.

Well, that's an idea anyway....

When my dad was in hospice they wouldn't let him have antibiotics (as in they wouldn't pay for them, so I just went and go a RX and paid for it myself... but Tarceva costs a bundle more than an antibiotic.) I guess my point is...they cant stop you from taking any meds--they can only say they won't pay for the meds.... (It has to do with the contracts that hospice has with the provider... so if you have private provider it may be easier than medicare.) My dad had medicare and under that contract, the hospice got a flat apx 100 dollars a day (in 1996) to "care" for my dad, which included providing meds for palliation.

I am rambling, but I think there is a way to get Tarceva in any case.

love and fortitude

elaine

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Hi, Bill, I am so sorry for your troubles. I can't help about the Tarceva but I can tell you our experience with Hospice. I know how much you like relevant facts. Again, I am so sorry. You are being so strong. So here goes.

When Jim went in to hospice, first a nurse and social worker came to the house, explained everything, and he signed papers. They gave him a prescription card for meds they would cover - in our case everything but the Megace for appetite. But whatever they didn't cover, we could still get through his regular insurance. They asked us what we needed - bed, commode chair, shower chair, wheelchair, walker, cane, and made arrangements for them to be delivered. They also offered a chaplain, home health care aide, and volunteers, as desired. The volunteers will do about anything, like go to the grocery store for you, pick up meds, return a library book. In our case, the supplier took a few days to show up which really annoyed us. I called Hospice and they got on the phone with the supplier and got them there.

The nurse came twice a week but I could call anytime day or night when needed. We had a choice of if we wanted our regular doctor or their doctor, whoever we wanted, the nurse would contact them for us and get whatever meds we needed ordered. They emphasized, we call Hospice, Hospice makes the arrangements, we don't do it ourselves. I guess that is part of the deal. I had no trouble getting anything we needed but in our case, we had to pick it up at the pharmacy. They were very liberal with the pain and anxiety meds, but still, that is your judgement call. They provide them, you use your best judgement as to what your wife needs.

One big difference I noticed was attitude - I felt like we were no longer running the show. I was used to monitoring and double checking everything myself, now the nurses were much more regulating things, just as if you were in a hospital or care facility. One good thing, you could ask them questions and they would tell you the answer straight. The whole outlook was different - they emphasized, this is about making Jim happy, not really about treatments.

Jim was only in hospice 10 days or so, he declined rapidly. My mother was only in it 2 days. Some people can be in it for a long time, but from what I read, in a condition like lung cancer, it can sometimes be swift, not to discourage you but just to be honest. Each person is different.

At the end, I called them, the on call nurse called me back, got dressed and came out to the house. She had a checklist of notifying people, noting details, offered a short list of things she could do right now - like clean him up, which wasn't needed for us. She asked for his meds - another thing that was different and us no longer running the show - and she removed all the ones with potential for abuse, I guess. The pain killers, tranquillizers, sleeping pills, counted them, and flushed them down the toilet, with me as a witness. (I wish I had set aside some of those sleeping pills, ha.) She called the funeral home and stayed with us until he got there, altogether I guess she was there about 2 hours. She would have stayed longer if we wanted.

We had another problem the the supplier afterward. They didn't come pick up the bed and other equiptment for several days, which could have been depressing. My sons and I carried everything out to the porch, covered it with a tarp and just left it there. I called Hospice again to complain, and they took care of it. The supplier acted none too happy about me pitching everything out on the porch but oh well.

Hospice gave it a little time, now has contacted me about bereavement counselling. I am going to be starting that the end of the month. It is no cost, included in the deal.

Anything at all that I can help with, which would mostly be information, PM me. I am so sorry. I wish I could help more. We all come to this eventually, young and old. At least your wife has you to help her. That is so valuable. It is all we can do but it is so much.

Best wishes, Margaret xoxoxox

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Bill

First of all let me express how sorry I am that your wife is not doing well. I hate it for you and for your wife.

About the Tarceva.......at one point while my Dad was taking Iressa, he considered hospice. His Blue Cross insurance was going to cover the Iressa and still let him get hospice care. We had to make several phone calls, but the insurance allowed it. In the end, Dad changed his mind and decide to do more chemo, so we didn't sign up with hospice.

In my thoughts and prayers~~~

Angie

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Bill,

I can't answer your questions, but I feel sad that your wife has taken a turn for the worse.....my thoughts are with you both. I hope you get everything you need to help care for her.

Cindy

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