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David still in hospice but hanging on

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Just an update on David since I haven't posted in quite awhile. And there are so many new ones on the board now. For background, my dear sweet wonderful husband David was dx 4-08 with stage 3 colon cancer. Eight months later a liver met was found and biopsied. After being told by three surgeons it was inoperable due to location, and after many months of chemo, we switched treatment to M. D. Anderson in Houston. After more chemo and portal vein embolization, he underwent liver resection March 24, 2010. Seventy five percent of his liver was removed and the main bile duct also had to be resected. He beat the cancer and remains cancer free. Unfortunately, he has had many complications from the surgery and is now in liver failure. Hospice has been good. He has a wonderful pretty nurse who makes his face light up when she comes.

Life is tough now but I am keeping it in. We are having wonderful quiet times together mixed with great visits from friends and family. David is at peace and in little pain.

Even stage fours can beat this cancer, so I don't want to discourage anyone. David would be fine, or at least able to fight the cancer if it returned, had it not been for the complications. Liver resection is still the gold standard for liver mets. So don't be afraid to go for it if you can. This board is so full of success stories after surgery.

We know our time is limited but I encourage everyone to at least discuss with their loved ones how they want their final days to be, and after life arrangements. David and I have shared so much in having these talks. It will give me peace knowing his wishes were met.

Best of love and luck to everyone. We are all in this together.

Hugs and Healing,
Priscilla

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I hate to toss my two centavos into this, but even with David
in hospice, have you considered consulting with a doctor
of Traditional Chinese Medicine? Even a qualified herbalist
can work wonders for boosting the immune system!

The liver can regenerate itself, but only if the body can supply
it with what it needs. All medications are toxic, and the liver
is the one organ responsible for cleaning the toxins out of the
blood. The liver gets overloaded when it's a complete organ,
so I guess you can appreciate how overworked it must be
when 70% of it's been removed.

That situation can be overcome with a good diet and some help
from other than "conventional" medications.

It's only a suggestion from me, but I really think it would be
to your advantage to consult TCM doc, or a good herbalist
and see what they might be able to offer.

Getting that liver back into shape can take less time when
the body has what it needs to do the job!

(If he was at home, I'd suggest "juicing" as well.. but a bit difficult
to do away from home)

Wishing you both the best!

John

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

You are so gracious and caring and I appreciate all your advice. Unfortunately, the problem with his liver is really mechanical. The remaining bile duct is simply clogged, like an artery does. Usually a stent can fix that but they tried and it didn't work. I was told there was nothing that could be done except a transplant which he isn't eligible for. I have done a lot of research and talked to several doctors and every opinion is the same. He is in hospice care but at home with me. I would never put him in a facility.

After we came home on hospice, I discussed your suggestion then to seek out alternatives. He was firmly against it. So thanks again,John. I think you have great ideas and we need you on this board. So don't get discouraged when others don't always agree. Each case is so different and whatever you are doing has been so good for you

Thanks for caring,
Priscilla

jscho
Posts: 62
Joined: Jun 2009

Hi Priscilla, one thing you may want to ask about is the possibility of off-label use of ursodiol (ursodeoxycholic acid), which is a bile acid used to increase the fluidity of bile to help it flow through constrictions. It does so by inhibiting an enzyme involved in cholesterol production. It also seems to activate liver cells by binding to a specific cell receptor in liver cells to release bicarbonate, which can help with the build-up of toxic bile acids.

For info on urso, see: http://en.wikipedia.org/wiki/Ursodiol

Hope this is useful,
Jeremy

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

David has been on that drug before for quite sometime. Tomorrow he is five months exactly from liver resection. He has fought so hard and done almost everything possible but nothing is working. Thanks for bringing it up. The description was familiar but not the name. He took it under the brand name Actigal.. Wish it had worked better.

Hugs and Healing,
Priscilla

jscho
Posts: 62
Joined: Jun 2009

Sorry to hear it didn't clear things up more. I've heard it often takes awhile to work, so maybe the drug can still help (assuming he's still taking it).

Bile ducts are tricky. Please know I'm thinking of you and hoping for the best.

Jeremy

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I won't dwell on this, or try to insist, but I would strongly suggest that
you read some info that's freely available: Google: Bile duct blockage

I have been given herbal broths that clear kidney stones within minutes.
I had one stone that the ER said must be operated on.... gone with herbs.

The science has been very good to me, and my wife, for over the 7 years
that we've been using it.

It isn't expensive, and although nothing is guaranteed, there is nothing
to lose by trying.

When western medicine gives up, there should be a power within us
to drive harder down some other path.

I really hate to see David continue to rely on the opinions of western medicine,
after it's finally brought him to the end of it's ability to help.

There -are- other options; TCM is one -very- viable one.

I wish David the very best health.

Take care.

John

archer1
Posts: 8
Joined: Aug 2010

If there are mets in the liver, signs of jaundice, significant weight loss, weakness, fatigue, and mass in the lower back area, do you think holistic alternatives would still be effective? I know the best medicine is positive thinking and a fight fight fight attitude, but do you think there would be a chance to get the liver functioning well enough to set the c in remission?

archer1
Posts: 8
Joined: Aug 2010

If there are mets in the liver, signs of jaundice, significant weight loss, weakness, fatigue, and mass in the lower back area, do you think holistic alternatives would still be effective? I know the best medicine is positive thinking and a fight fight fight attitude, but do you think there would be a chance to get the liver functioning well enough to set the c in remission?

John23's picture
John23
Posts: 2140
Joined: Jan 2007

Re:
"If there are mets in the liver, signs of jaundice, significant
weight loss, weakness, fatigue, and mass in the lower back area,
do you think holistic alternatives would still be effective? I
know the best medicine is positive thinking and a fight fight
fight attitude, but do you think there would be a chance to get
the liver functioning well enough to set the c in remission? "

There's a difference between "holistic alternatives" and a science
that's thousands of years old, Archer1.

My best hopes and wishes go to Priscilla and David.

John

archer1
Posts: 8
Joined: Aug 2010

Sorry John, I don't know much about holistic alternatives or the traditional chinese medicine or even the difference in both, so it looks like my question may have been worded the wrong way.

With those symptoms, do you think it would be too late to look into the traditional Chinese medicine? Do you also know what can be expected during this time ...pain, etc.?
How do you go about finding someone who practices this type of treatment?

Thanks for your help.

Hopes and wishes go to Priscilla and David as well.

John23's picture
John23
Posts: 2140
Joined: Jan 2007

I dropped you a PM.

Take care!

John

462lt's picture
462lt
Posts: 118
Joined: Jun 2010

Thanks for your wonderful words of encourgement. I am soooo sorry that thing worked out for your husband not as expected but may you rejoice in each others company and the company of your friends and family for as long as it lasts which I wish you and yours is a very long time. Laura

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Laura,

This is a great group and you fit right in! Thanks for caring,
Priscilla

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pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Thanks for your kindness! You are an inspiration, too.
Priscilla

AnneCan
Posts: 3692
Joined: Oct 2009

I have been wondering how you + David are doing. I have missed seeing your beautiful picture + was so happy to see it today. I am glad you are having some wonderful times with family + friends. Thanks for your unselfish encouragement for everyone here. I am sending you lots of warm thoughts. Take good care.

geotina's picture
geotina
Posts: 2117
Joined: Oct 2009

May you both find peace and comfort during this most difficult time.

Love to you both - Tina and George

luv3jay's picture
luv3jay
Posts: 534
Joined: May 2009

You are such an inspiration and thank you for posting. I will keep you both in my prayers.

Sheri

dorookie
Posts: 1736
Joined: Jul 2007

My thoughts and prayers are with you both, I am so sorry things are going badly for David, I am glad to hear that you two are having some very precious moments. Take care of each other.

Love and Hugs
Beth

mom_2_3
Posts: 964
Joined: Nov 2008

Priscilla,

I keep both you and David in my prayers. I pray that you have continued strength and courage as you care for your beloved and I pray that he continues to be painfree and enjoying this quiet time you are sharing. I am also praying that his liver can recover and that he will be back to his full health.

Amy

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

Priscilla,

I'm praying for you and David. The quiet time together sounds like such a blessing! I do hope that there will be a miracle for you and David...

Thank you for your wonderfully encouraging post, despite your heartache.

*hugs*
Gail

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

You all made my day! We have the best group ever on this board! I am running out of time and wanted to thank everyone personally but I can't. So a big hug to all. You are all THE BEST!

Priscilla

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Dear Priscillia,

You are a woman of grace. To read how you and David are going through this very difficult time with so much love and warmth for each other shows so much about the two of you. I will continue to pray that you have beautiful time together.

Aloha,
Kathleen

Lilmiss82's picture
Lilmiss82
Posts: 257
Joined: Dec 2009

my heart goes out to you and David. I adrime the love and respect you have for each other. It truly is beautiful. I'll have the both of you in my thoughts and prayers -Melissa

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

I feel you are a woman of grace extraordinaire! What would we do without God with us to help navigate these stormy seas? My best to you and your family. I pray Dick beats this disease. Your beautiful family needs him!

Love
Priscilla

Sonia32's picture
Sonia32
Posts: 1078
Joined: Mar 2009

Keeping you both in my prayers.

Hugs

ktlcs's picture
ktlcs
Posts: 360
Joined: Jan 2010

My heart goes out to the both you. Cherish this time you have together

Kathy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

l was 4 days of severe liver failure ( Inc high level of encepalopathy) after my resection, 75% too, and here l am. Let,s figth together!
Vibes&prayers!

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Priscilla,

For you to still be so encouraging to others in the face of your own hearache with David's condition is amazing to me. I am praying for you and David right now.

Hugs,
Lisa

Paula G.'s picture
Paula G.
Posts: 596
Joined: Apr 2009

Sorry to hear this about David. I haven't been on the board much either. I hope you will be ok. My thoughts are with you both and your family. Love Paula

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Your post has me at a loss for words. If only I could be as brave as you and David are. I know you've been there every step of the way and are well versed in all of the options or non-options available, so I take your word verbatim with what you tell us.

It's wonderful that you have wonderful friends and family around you - that must be really a blessing for you.

I don't want to think about anything past this - just hurts too badly.

You are a great comfort and a source of inspiration for this board and we're proud to have you here. It's folks like you who are teaching me what it's all about every day that I logon here.

-Craig

angelsbaby's picture
angelsbaby
Posts: 1171
Joined: May 2008

Strength to you and your husband.In this most difficult time my thoughts and prayers are with you both.
I am sorry

michelle

Jaylo969
Posts: 827
Joined: Jan 2010

My thoughts and prayers are with you and your dear husband.

-Pat

Aud's picture
Aud
Posts: 480
Joined: Oct 2009

you and David are in my thoughts and prayers. Holding you both in the Light for healing, hope, and peace.
Love to you both,
Audrey

HollyID's picture
HollyID
Posts: 951
Joined: Dec 2009

Wishing and praying for David's healing.

What an inspiration you are!

SandyL
Posts: 220
Joined: Feb 2009

My deepest and most sincere feelings of anger are beginning this morning already. So many of my friends on this site have been getting bad news it really messes with ones beliefs. I want you to know that you and your family are being thought about and prayed for. God Bless.....
Sandy

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Keep us updated please!
Best!

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

Pepe,

Thanks for asking. Today marks the five month anniversary of his liver resection and he is really getting tired. He has confusion and sleeps so much. He is in very little pain, for that we are blessed. I believe his days are getting very numbered and I cherish everyday with him. I hope he holds on till everyone gets to Texas to see him. You are so kind to ask. I wish his resection had been a success and I am glad you got over your days of liver failure. His remaining liver remnant was in bad shape and the blocked bile duct complicated it even more.

Keep posting! This is great group. It's hard to lose our loved ones on this board. A very sad day with Donna's passing. Keep in touch!

Hugs and Healing,
Priscilla

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

Just keep your strength l pray for it and for David!
Keep us informed.
God bless you .
Pepe.
Barcelona.

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

lm thinking about you and David, how the things are?
Hope better!
Send you my prayers.
Pepe!

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

lm thinking about you and David, how the things are?
Hope better!
Send you my prayers.
Pepe!

pf78248's picture
pf78248
Posts: 209
Joined: Jul 2008

David is now surrounded by his entire family except our daughter in law who will be here soon. Most of his friends have been here off and on. And our church family has been wonderful

As I write, I am at his bedside with him resting comfortably. We had a good cry together this morning. He knows the end is near and his biggest issue is the confusion that comes with hepatic encephalopathy. That is hard to watch.

You are so good to ask about him. I hope you are doing ok and fighting your cancer as hard as you can. Thank you again for your kindness.

Hugs and Healing,
Priscilla

Kathryn_in_MN's picture
Kathryn_in_MN
Posts: 1258
Joined: Sep 2009

I'm glad to hear the family is all there now, and that friends have come by. As much as cancer sucks, it does bring one gift - time. In most cases we know the end is coming and can have a chance to say goodbye, rather than getting a phone call or knock on the door that puts us in shock. I'm not sure it makes saying goodbye any easier, but it does away with the "I only wish I got the chance to say goodbye" guilt.

I hope your family can pull strength from each other to get through these difficult days, and that David continues to be comfortable without much pain.

AnneCan
Posts: 3692
Joined: Oct 2009

Priscilla,

I am thinking of you + David. Thanks for taking the time to let us know how David is doing. Take good care of yourself.

grammadebbie's picture
grammadebbie
Posts: 429
Joined: Jun 2009

Dear Ones,

Thank you for sharing such intimate feelings with us. I have no words to express the admiration and respect I feel towards you and your family. May the Lord Bless you and keep you give you peace and comfort.

Big Hugs and Prayers,

Debbie

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Priscilla,

I'm sorry the end seems to be near for David- how very, very difficult.
My thoughts and prayers are with and for you and your family right now.
Take care and God bless and keep you during this time.

Lisa

pepebcn's picture
pepebcn
Posts: 6352
Joined: Aug 2010

There are not words in this moments , the only console is that you are all together with him ,and it seems no pain ,
l Send my best wishes to you and for all your wonderful family.
Take care of you too.
Pepe .

Annabelle41415's picture
Annabelle41415
Posts: 6181
Joined: Feb 2009

Thinking of you both and wishing you the best. Sorry this is so hard right now. Just hoping that you know you both are being thought and prayed for.

Kim

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

So Sorry David is doing so poorly. No words can describe the anguish I feel. Try and be strong, it has to be tough! Hugs, Raque;

chicoturner's picture
chicoturner
Posts: 285
Joined: Apr 2009

Priscilla and David, You are both in my prayers. Hugs to you both. Love, Jean

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