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phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

I'm so sad....we got the results of the CT scan and the cancer in Michael's liver has gotten worse and it has spread to the lungs. They are going to put a catheter in his belly tomorrow the keep the fluid drained but that is all they can do. He'll be coming home tomorrow and the doctors want us to contact hospice. How did everything go so bad so quickly? His tumor markers were going down and the PET scan showed the activity had decreased. Why does the CT scan have to be such a kick in the pants??? I asked him to see another doctor but he's tired and defeated. 5 short months...that's all it's been since he was diagnosed.

christinecarl's picture
christinecarl
Posts: 545
Joined: Sep 2009

That is so fast, hardly enough time to fully wrap one's head around it all. I wish had something useful or profound to say. All I can say is I pray for strength and peace for you and your family.

Shayenne's picture
Shayenne
Posts: 2370
Joined: Jan 2009

To hear this...but is that tired and lost for hope that he couldn't get a 2nd opinion?? He's too young and healthy, so sad to hear that he's succumbing to this...he really can't get anything else done??? I wish he could, and I will be praying for him to get his strength back, you will both be in my prayers!

Hugsss!
~Donna

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

Donna

I still can only hope that you are right and that there is something somebody can do for him. This was our 2nd opinion. He's very jaundice and has very little strength. I'll try and nurse him back to health and see if he would be willing to go somewhere else. Thanks for the prayers!

Julie 44
Posts: 479
Joined: Oct 2008

I am so sorry that it has gotten to this point...PLEASE make him get another opinion...Go wherever you have to and go as many times as it takes cause he is so young and there is sooo much out there to try...Have you been to a major cancer hospital? Many places will put you up for the duration of your visit.Please don't give up..Again I am so sorry that you both have to go through this..My prayers are with you and Good luck...JULIE

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

I am so sorry this is happening to Michael and you. Where was your second opinion? Do you know the results of the fluid they drained? Only 5 months into this monster,I just don't know what to say. I was so hoping this second opinion would give you some type of hope of another treatment, surgery, radiation, anything. I know you will take good care of Michael. My George also has mets to the lungs and liver. He is stable now but God only knows what tomorrow might bring. Does this second opinion concur with your original doctors? I just feel so bad for you two, you needed a break so bad and just are not able to catch one. Please keep us informed, I know the whole board is pulling for you two. Appropriate words of comfort escape me, I am devastated for you two. I'm so sorry. Hang in there. Tina

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

Phoebe

This is quite a bit to be absorbing - it must be so hard for you and your husband right now. I guess there is a part of me that just can't stop - I must fight until my dying breath, because even when things look hopeless, it is better to keep trying, because that is where the chance is.

Now, having said that, I of course don't understand all of your situations and how you are both feeling - I just know that your post has me very sad and like everyone else, I'm struggling for something to say or recommend that could help you both. Your husband has been through quite alot and it's not for me to say when enough is enough for him - I just wish I could fight for him.

I've always been a big proponent of Quality of Life - when the quality of our life is gone, then we are gone. I am not sitting in your husband's shoes and maybe he is tired of everything and very sick and just does not have the strength to fight - Cancer makes me so mad of what it robs from us and our loved ones.

I support his decision if that is how he truly feels - we all have the right to choose in fighting or not - I'm hoping that you can nurse him back to a state where he can try again. Hospice is pretty serious though but I'm going to pray that each of you find peace and calm during this most difficult time.

I'm afraid that words have again failed me...please give your husband our love - he has my respect 10-fold and so do YOU.

-Craig

just4Brooks's picture
just4Brooks
Posts: 988
Joined: Jun 2009

This is the 2nd bad news story today.. I HATE CANCER!!! I'm praying for the best for Michael and you (and that good looking dog in you pic). Please PM me anytime you need to. I have worked Hospice for 12 years and have owned my own hospice agency here in San Diego County and I'm here to help in any way I can.

PLEASE PM me if you need too, I'll give you my phone number if you need it... I'm sending you my love and prayers

Brooks

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I am so very sorry to hear this and will pray for you both.

AnneCan
Posts: 3692
Joined: Oct 2009

I am so sorry to hear this news. I hope your husband will regain his strength & get another opinion. I am thinking of you both.

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

I'm praying for the two of you. My first instinct as a wife would be to beg him to keep fighting and keep looking for another opinion to possibly find a cure. But I can understand how he may be at a point of wanting the last days to be as good as they can be. I hope that God will lead the two of you to the best course.

We're here, so please let us do what we can.

*hugs*
Gail

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I don't want to sound negative, but you mentioned a few weeks ago that the doctor mentioned his 'stomach showed caking'. I looked that up back then. Have you asked the doctor to address or explain that condition?

Praying for you both.

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

Dearest Phoebe,

I am so sorry. The fatigue that comes with cancer is undescribable. I will be praying for you. Please let us know if there is anything else we can do. We're here for you.

God Bless You,

Debbie (gramma)

ittapp's picture
ittapp
Posts: 385
Joined: Jun 2009

May the Lord lead you both in the way to fight. God Bless you, Patti

lcarper2
Posts: 638
Joined: Dec 2009

the best thing you can do is be there for him don't let him give up he has to claim the healing that is here for him and go where ever he must go to get the answers that are out there pray for guidence in what God wants you to do. He needs alot of prayer and I have started a prayer chain for you both keep us posted and may God bless you.

KATE58's picture
KATE58
Posts: 300
Joined: Nov 2009

you are in my prayers

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I am deeply saddened by your news. Please know that both of you are in my prayers.
With caring thoughts,
Joanne

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

Phoebe,

As others have already said, I'm so sorry to hear this news. It seems like it just can't be right that there's nothing else that can be done. To address the major liver issue, what about a intrahepatic pump (chemo pumped directly into the liver)? That might not deal with the lungs, but I believe it would have a quicker response on the liver, which seems to be mostly causing his weakness and illness (hence the jaundice). I would check into that right away. Then, could he qualify for any clinical trial? Check out clinicaltrials.gov or talk to an oncologist at a major cancer center.

I will be praying for the both of you. This is so lousy!

Lisa

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

Dear Phoebe,
I feel so very sad for you and Michael. 5 months is so fast for this to turn bad. I pray that you can find a doc to give you hope. I will pray that you have support during this time. I pray that Michael can go forward and find some hope.

Praying for you.

Aloha,
Kathleen

zenmonk
Posts: 198
Joined: Nov 2009

I feel like I have been kicked in the gut. I just dont know what to say. Praying.

TLG320
Posts: 168
Joined: Oct 2009

You're both in my prayers, Phoebe. I'm so so sorry for this awful news. Please keep us posted and know that many are praying and hoping for you.

hugs,
Tashina

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

My prayers and thoughts are with you both.

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

I am so sorry I don't have the words right now just spend every minute with him and love him.

michelle

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

So very sorry to hear this news. Just hope he can get the strength to get another opinion before you have to just not do anything. Maybe just call other doctors right now instead of taking him there if he is too weak. Try and see if he will go along with you just calling.

Kim

krf's picture
krf
Posts: 99
Joined: Dec 2009

Phoebe- I am at a loss. This is such a terrible blow and my heart aches for you.
Perhaps you could send his scans out to other Docs and see if you could get a response. Perhaps a flicker of hope from another place would give Michael enough strength to fight on.
I can't tell you how sorry I am. You are living my what I fear from this disease and I wish I could do something to help you through all this.
Thinking of you-
Kim

lostit2003's picture
lostit2003
Posts: 53
Joined: Dec 2009

phoebe

I'm so sorry. I'll kept you in my prayers. Never give up hope.

Tina

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

I really want to send his scans to MD Anderson because I know they specialize in liver mets. Does anyone have any recomendations of doctors in the Milwaukee/Chicago area?

I asked the doctors about the "caking" in the stomach that the other doctor had mentioned and they said they didn't see anything in the stomach. It's these discrepancies that make me skeptical of the prognosis.

The doctors say that the tumors in his liver are so large and his liver is so compromised that the HAI pump wouldn't be an option. His liver just can't handle the chemo. I will keep searching and grasp at any straws I can....

All prayers are greatly appreciated!

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

so sorry to hear this. my thoughts and prayers are with you and your husband tonight.
Audrey

krf's picture
krf
Posts: 99
Joined: Dec 2009

Hang in there, Phoebe.
Thinking of you.

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

It is about a 4 hour drive from Chicago but have you thought about the University of Michigan in Ann Arbor, Michigan. Straight shot down I94 from Chicago. We live about a half hour from there and they are in the top 10 in the country for cancer. That is one place we are thinking of for a second opinion. I don't know much about them but I would think Northwestern in Chicago would also be a good choice. Both are major centers. MD Anderson is #1 but I don't know how quickly you can get in there. I have also heard good things about Vanderbilt in Tennessee. Thinking of you daily - Tina

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phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

I could never be angry with him for giving up the fight. I see how hard it's been on him and it breaks my heart to see such a strong healthy man deteriorate so quickly.

I have read many of your stories to him and they do inspire him...but his liver is not at all inspired. If there was anything I could do to just keep him strong and improve his liver function. His bilirubin was at 18 the last time I asked....I didn't ask today...I was afraid of the answer.

I don't know what it's like to go through chemo or surgery or all the other horrible "treatments" he has had to endure. But I do know that it is excruciating to sit back and watch a loved one go through this.

All your stories inspire me everyday and I will never stop searching for something new to help him.

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

Your husband is thought and prayed for this minute. I feel so bad for your situation. Please know that you and husband are in my thoughts. I don't know what to say to make it better. I can understand both of your situations. May God Bless you and husband.

Kim

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sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

Seems to be quite aggressive with the liver. My prayers are with you but please please do not give up! My prayers are with you.

MelanieT's picture
MelanieT
Posts: 188
Joined: Nov 2009

I am so sorry and so sad for you.. This monster is so cruel and does what it wants. Chris scans of the mass in his lungs came back as a cluster left over from his blood clots but this week he has horrible stomach pain and they are worried its there.. Half the time i dont want the answers so i so understand not asking today.. i will pray for you both and know i am here to vent..
Loves,
Mel

karguy's picture
karguy
Posts: 1024
Joined: Apr 2009

Please get a second opinion.I know how hard it is to go thru all that ,and to be in pain all the time.I was more than ready to just quit and give up,I wanted nothing more than to just roll over,and die,just be done with it.But I had a brother die from cancer,and some friends,and I decided that I was going to fight to the very end no matter what,so I had to force myself.I don't remember who,but I remember that someone on this site saying that when it spread to their liver,the dr. just took sections,1 at a time untill they got it all.I'll be praying for you.

ann2008's picture
ann2008
Posts: 119
Joined: Nov 2009

I am so sorry for you and your husband. Please know you are in my prayers.

banma
Posts: 9
Joined: Jan 2010

The easy thing to say is "keep looking for opinions" but at some point enough is enough. May you cherish the time remaining with Michael, may it be longer and happier than anybody can now imagine, and may you both find peace in the love you obviously share. The picture proves that you are a cute couple, you really are, but your love for each other is also well beyond that -- it is forever.

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

My husband has cancer in his liver and lungs and adrenal gland. I would get a second opinion. I have seen post were it turns on a dime. I am so sorry for you. You are in my thoughts. Paula

abmb's picture
abmb
Posts: 311
Joined: Sep 2009

I am so sorry to hear your bad news. I will keep you in my Prayers. God Bless. Margaret

jakesman
Posts: 33
Joined: Sep 2009

I found this while surfing in one of the other forums:

http://www.blockmd.com/

They use integrative therapy, and not just chemo so I assume it's at least several times more effective. Don't give up hope. If you go the front page there are multiple stories of people who were told the same thing by the doctor as your husband - today they're either doing much better or are in remission.

grandmafay's picture
grandmafay
Posts: 1639
Joined: Aug 2009

I am so sorry about your news. I just wondered if you knew about the caregivers discussion board here. I didn't find it until late in my husband's cancer battle. There are a number of people going through the same things you are on that board. Just go a little lower in the listings. It doesn't get as much traffic as this one, but it was really helpful for me. Fay

suzanne-yes's picture
suzanne-yes
Posts: 25
Joined: Jan 2006

Phoebe,

After your husband's ascites is drained, he may feel much better! The fluid in his tummy is very uncomfortable, sometimes makes it hard to breathe, and is exhausting.

From reading your earlier posts, it sounds as though his bilirubin is really rising, too. If the tumor is blocking the bile duct a stint or drain can on occasion be placed to allow the bile to flow instead of backing up. You would need to consult with an interventional radiologist about this possibility. The high bili may also make him much more fatigued and his thoughts may be very scattered.

Thinking of you,
Suzanne

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

The doctors said the tumors are not blocking his bile duct. They say that the disease has just caused his liver to stop functioning. I'm not convinced that the chemo didn't shut his liver down. The CT showed the tumors were a little bigger but not much had changed. I guess the cause isn't important at this point. My hope had been that they would find a blockage but unfortunately, that wasn't the case.

You are exactly right....he seems confused most of the time and it is hard to carry on a conversation. He is eating a little but stays in bed most of the time. It's heart wrenching! As much as I dread the thought of living without him....I hope for his sake this phase doesn't last a long time. :(

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

Phoebe,
I am thinking about you a lot and pray the two of you can get some peaceful time. So very sorry you two are at this point.

With aloha,
Kathlen

thready's picture
thready
Posts: 475
Joined: Sep 2009

Phoebe,
Sending prayers for you both, praying for you to have time to be together without the pain. My heart hurts for you so much.
Jan

dianetavegia's picture
dianetavegia
Posts: 1953
Joined: Mar 2009

I hope this phase is over very quickly and I do hope Mike is not in pain.

Do you have family near-by who can help you?

phoebe1017's picture
phoebe1017
Posts: 37
Joined: Sep 2009

Some close friends stayed with me all weekend and my mother and sister are coming tomorrow. They will be a great help and comfort to me. Hospice is also coming by tomorrow. Everyone keeps saying how helpful they are but I'm not quite there yet....we'll see.

Buzzard's picture
Buzzard
Posts: 3073
Joined: Aug 2008

I has sent you an address an a phone # for Vanderbilt Ingram Cancer Center...I went there, they are excellent...

PhillieG's picture
PhillieG
Posts: 4885
Joined: May 2005

Things can happen so quickly. I hope Michael is resting and being as comfortable as he possibly can. The same goes for you Phoebe, it can't be easy at all.
-phil

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