Stage IV - What to Expect

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Stage IV - What to Expect

by bluebirdlover on Wed Jun 10, 2009 12:00 AM

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Hi All,

I'm the primary caregiver for a very dear friend with inoperable Stage IV pancreatic cancer (tumor on the tail of the pancreas), metasticized to the liver.  He was diagnosed in July 2008, advised that he could expect to live 3 to 6 months with chemotherapy; probably less time without chemo.  He chose chemo and has undergone 8 rounds of Gemzar (one treatment weekly for three weeks, then one week off).  He just had a PET Scan done and we are awaiting the results of that.  Previous PET Scan results showed tumors had shrunk and there were no new tumors.  The past month, however, he has experienced chronic diarrhea and pain in the lower abdomen.  Everything he eats goes right through him just like water.  He is taking pancreatic digestive enzymes and using an anti-diarrhea medication.  He was checked for bacterial infection in the gut and that came back negative.  He is also extremely fatigued and spends most of his time in bed.  He does get spurts of energy, but afer a couple hours being up and about ends up back in bed. 

We have not contacted Hospice yet because he has done well up until the past four or five weeks.  I want to know what is happening and what to expect going forward.  Any insight would be greatly appreciated.

Bluebirdlover

RE: Stage IV - What to Expect

by Denie on Wed Jun 10, 2009 12:00 AM

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Hi Bluebird,

What a blessing you are to your friend.  Your message sounded just like you were describing my husband of 24 years.  It is a very hard thing to watch no matter who it is.  I've never seen a more cruel cancer.

I called Hospice about 1 month before my husband passed.  I wish I'd called them sooner even though he was still having those "energy bursts".  He began to spend most of his time in bed and was coming into some pretty good pain.  I tried to stay ahead of it but wasn't able to.  That's when Hospice came in.  They were wonderful.  They kept him more comfortable with stronger drugs and told me what was next, step by step.  During this time he had completely stopped eating but was thirsty.  Soon that went too.  He slept 22 out of 24 hrs. but somehow he seemed to hear me and try to respond.  The night before he passed he was soaking wet with sweat and his arms were icy cold.  His eyes were closed for 3 days before he took his last 4 breaths, turning his head toward me.  Before his eyes closed they had turned from dark brown to grey.  He also needed a diaper.  My beautiful strong man. 

God Bless you.  I'll pray for you and the strength you'll need to see him comfortable.  Do call Hospice, they're so very helpful.  They think of every little thing.

Take care of yourself too.

Denise

RE: Stage IV - What to Expect

by Unknown_Member on Thu Jun 11, 2009 12:00 AM

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On 6/10/2009 bluebirdlover wrote:

Hi All,

I'm the primary caregiver for a very dear friend with inoperable Stage IV pancreatic cancer (tumor on the tail of the pancreas), metasticized to the liver.  He was diagnosed in July 2008, advised that he could expect to live 3 to 6 months with chemotherapy; probably less time without chemo.  He chose chemo and has undergone 8 rounds of Gemzar (one treatment weekly for three weeks, then one week off).  He just had a PET Scan done and we are awaiting the results of that.  Previous PET Scan results showed tumors had shrunk and there were no new tumors.  The past month, however, he has experienced chronic diarrhea and pain in the lower abdomen.  Everything he eats goes right through him just like water.  He is taking pancreatic digestive enzymes and using an anti-diarrhea medication.  He was checked for bacterial infection in the gut and that came back negative.  He is also extremely fatigued and spends most of his time in bed.  He does get spurts of energy, but afer a couple hours being up and about ends up back in bed. 

We have not contacted Hospice yet because he has done well up until the past four or five weeks.  I want to know what is happening and what to expect going forward.  Any insight would be greatly appreciated.

Bluebirdlover


First of all, we have our 2nd nesting of Blue birds in the same house,  Mama and eggs are doing well.  We also have a nest or wren in the wreath on the front door. 

 As for the PC, everyone reacts differently.  I read some who are diagnose with stage IV PC and are gone within weeks.  Others continue on for much longer.  I got the same diagnosis in 9/08.  The first chemo (Gemzar and Tarceva) had real bad side effects and after a scan we found it did no good.  So, we switched to 5 FU and Leukovarin.   After the first round the scan showed all the tumors had shrunk and no new ones.  When and if this is not working I'll try something else if possible. 

The point is that there are many combinations of chemo and radiation and you just have to keep on trying.  If something doesn't work, try another.

I'm am now enjoying a good quality of life.  Played golf twice this week.  Doing about everything I did before although I have very little stamina.  Of course, I'm also 66 years old.

I strongly believe in an antidepressant.  It really lifted my spirits and increased my appetite.  I had lost 40 pounds and have gained it all back. May be something to consider.  Mine is generic Paxil.

Best wishes.  Don't give up.  I believe in hospice but it is going to be a last resort for me, also.

RE: Stage IV - What to Expect

by bluebirdlover on Wed Jun 17, 2009 12:00 AM

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On 6/11/2009 ACE42 wrote:

 

On 6/10/2009 bluebirdlover wrote:

Hi All,

I'm the primary caregiver for a very dear friend with inoperable Stage IV pancreatic cancer (tumor on the tail of the pancreas), metasticized to the liver.  He was diagnosed in July 2008, advised that he could expect to live 3 to 6 months with chemotherapy; probably less time without chemo.  He chose chemo and has undergone 8 rounds of Gemzar (one treatment weekly for three weeks, then one week off).  He just had a PET Scan done and we are awaiting the results of that.  Previous PET Scan results showed tumors had shrunk and there were no new tumors.  The past month, however, he has experienced chronic diarrhea and pain in the lower abdomen.  Everything he eats goes right through him just like water.  He is taking pancreatic digestive enzymes and using an anti-diarrhea medication.  He was checked for bacterial infection in the gut and that came back negative.  He is also extremely fatigued and spends most of his time in bed.  He does get spurts of energy, but afer a couple hours being up and about ends up back in bed. 

We have not contacted Hospice yet because he has done well up until the past four or five weeks.  I want to know what is happening and what to expect going forward.  Any insight would be greatly appreciated.

Bluebirdlover


First of all, we have our 2nd nesting of Blue birds in the same house,  Mama and eggs are doing well.  We also have a nest or wren in the wreath on the front door. 

 As for the PC, everyone reacts differently.  I read some who are diagnose with stage IV PC and are gone within weeks.  Others continue on for much longer.  I got the same diagnosis in 9/08.  The first chemo (Gemzar and Tarceva) had real bad side effects and after a scan we found it did no good.  So, we switched to 5 FU and Leukovarin.   After the first round the scan showed all the tumors had shrunk and no new ones.  When and if this is not working I'll try something else if possible. 

The point is that there are many combinations of chemo and radiation and you just have to keep on trying.  If something doesn't work, try another.

I'm am now enjoying a good quality of life.  Played golf twice this week.  Doing about everything I did before although I have very little stamina.  Of course, I'm also 66 years old.

I strongly believe in an antidepressant.  It really lifted my spirits and increased my appetite.  I had lost 40 pounds and have gained it all back. May be something to consider.  Mine is generic Paxil.

Best wishes.  Don't give up.  I believe in hospice but it is going to be a last resort for me, also.

 

Thanks so much for your reply.  My second batch of bluebird hatchlings left the nest two days ago.  We had a terrible thunderstorm with a really hard downpour that night.  I do hope the little fledglings survived.  I have another nest box on my neighbor's property.  That mama bluebird is also on her second batch.  She is still feeding her hatchlings, but I think they should also be leaving the nest in the next couple days.  I love watching birds and especially enjoy listening to their morning calls as I am enjoying a cup of coffee on the back deck.

My friend is also on an antidepressant, Lexapro.  He just got the results of the latest PET scan and the tumors in the pancreas and the liver have grown a little, even with all the Gemzar treatments.  We are meeting with the oncologist tomorrow to discuss other treatment options.  The way I understand it is that the tumors in the liver are pressing on blood vessels that feed the bowels, which is why he is experiencing so much pain in the lower abdomen.  He is pretty upset right now, but he is a fighter and tends to be optimistic. 

Your note indicates you were diagnosed about two months after our family friend, Joey.  I am encouraged that you continue to do so well.  He is a few years younger...57.

 

RE: Stage IV - What to Expect

by bluebirdlover on Wed Jun 17, 2009 12:00 AM

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On 6/10/2009 Denie wrote:

Hi Bluebird,

What a blessing you are to your friend.  Your message sounded just like you were describing my husband of 24 years.  It is a very hard thing to watch no matter who it is.  I've never seen a more cruel cancer.

I called Hospice about 1 month before my husband passed.  I wish I'd called them sooner even though he was still having those "energy bursts".  He began to spend most of his time in bed and was coming into some pretty good pain.  I tried to stay ahead of it but wasn't able to.  That's when Hospice came in.  They were wonderful.  They kept him more comfortable with stronger drugs and told me what was next, step by step.  During this time he had completely stopped eating but was thirsty.  Soon that went too.  He slept 22 out of 24 hrs. but somehow he seemed to hear me and try to respond.  The night before he passed he was soaking wet with sweat and his arms were icy cold.  His eyes were closed for 3 days before he took his last 4 breaths, turning his head toward me.  Before his eyes closed they had turned from dark brown to grey.  He also needed a diaper.  My beautiful strong man. 

God Bless you.  I'll pray for you and the strength you'll need to see him comfortable.  Do call Hospice, they're so very helpful.  They think of every little thing.

Take care of yourself too.

Denise


Hi Denise,

 My condolances on the loss of your husband.  But thanks for your reply.  Yours is the kind of information I am looking for.  I'm really not nurse material, but our family friend, Joey, needs someone to look after him.  He is divorced and alone.  No one should die alone, so my family is doing what they can, but I have become his primary caregiver.  He doesn't want me to call Hospice yet.  I told him as long as he is able to get up to shower and take care of business, I will hold off.  He does get spurts of energy.  A week ago he got on the riding lawnmower and mowed the lawn.  It takes about an hour to do both the front and back yards, but he did it and he felt so good about himself afterward.  He said he wants to contribute to the household chores when he feels up to it. 

RE: Stage IV - What to Expect

by Unknown_Member on Wed Jun 17, 2009 12:00 AM

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I hope you oncologist will come up with a good plan that will work.  The    5FU is not supposed to be as effective as the Gemzar but it has worked for me so far.  If it stops working I'll look for something else.  I don't intend to give up until it's my time to go.  The disease is not curable but it can be prolonged.  I told my wife that I thought I would be gone in April.  Glad I was wrong.

Haven't seen the momma bluebird around for a couple of days but the eggs are still there.  Hope I've just missed seeing her.

Best wishes.

RE: Stage IV - What to Expect

by 570sheila on Wed Jun 17, 2009 12:00 AM

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On 6/17/2009 ACE42 wrote:

I hope you oncologist will come up with a good plan that will work.  The    5FU is not supposed to be as effective as the Gemzar but it has worked for me so far.  If it stops working I'll look for something else.  I don't intend to give up until it's my time to go.  The disease is not curable but it can be prolonged.  I told my wife that I thought I would be gone in April.  Glad I was wrong.

Haven't seen the momma bluebird around for a couple of days but the eggs are still there.  Hope I've just missed seeing her.

Best wishes.


Hello....Not to long ago I was watching T.V.....A news story and heard that Boston Medical, I belive OR it may have been in Maryland....ethier way if you Google it....PC new cures....You may want to check it out. I heard they are doing wonderful things for PC. God Bless.......

                              Sheila

RE: Stage IV - What to Expect

by bluebirdlover on Thu Jun 18, 2009 12:00 AM

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On 6/17/2009 ACE42 wrote:

I hope you oncologist will come up with a good plan that will work.  The    5FU is not supposed to be as effective as the Gemzar but it has worked for me so far.  If it stops working I'll look for something else.  I don't intend to give up until it's my time to go.  The disease is not curable but it can be prolonged.  I told my wife that I thought I would be gone in April.  Glad I was wrong.

Haven't seen the momma bluebird around for a couple of days but the eggs are still there.  Hope I've just missed seeing her.

Best wishes.


Mom and dad bluebird will not abandon their eggs unless something very drastic happens.  While dad sometimes feeds mom while she is sitting on the eggs, she will also leave the nest to hunt for herself.  If it is hot, she does not need to sit on the eggs as much either.  I'm sure she's around.

Our friend Joey's oncologist is going to start him on Oxaliplatin (Eloxatin) in combination with Capecitabine (Xeloda) beginning next Thursday.  The Xeloda is a pill that he will take twice a day, for 14 days; then one week off.  He will take the Eloxatin through his IV port once every three weeks.

I'm glad you were wrong about "not being around after April," as I'm sure your wife and family are.  I believe it is ultimately in God's hands. Joey was disappointed when he realized that the Gemzar had stopped working for him, so I reminded him to be thankful for the blessing God has given him of 11 fairly healthy months, and that he needs to continue the positive attitude that he had in the beginning.  As you said, don't ever give up the fight.

 K

 

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