Topic: Running out of time?

Hi everyone. First, I just want to say that I am thankful to find this website and to see that there is support out there for this type of cancer. My heart goes out to everyone who is dealing with this and it gives me comfort that my family is not alone.

My father (53 years old) was just recently diagnosed. He was hospitalized on 8-14-06 because of jaundice. After tons of tests and a liver biopsy, it was determined on 8-28-06 that he had cc. He has satge 4 cc with mets to the liver, lymph nodes and the omentum. His bilirubin level was 31 at the highest point and his CA19-9 level was at 12,000. We were told he had 2-3 months to live and pallative care would be the best option.

We sought a second opinion at The Mayo Clinic, where he is currently being treated. Our oncologist at the Mayo told us that chemo was an option but we had to wait until the jaundice cleared before chemo could be started. The prognosis is still poor though.

He has had 2 drainage tubes (1 at St. Johns, 1 at Mayo) put in to try to clear the jaundice but his bilirubin levels as of 9-16-06 are still at 10.1. They have found a blood clot in his lung and clots in his legs. He's currently hospitialized because of severe dehydration, extremely low blood pressure and ascites. They are still working on finding the cause of his low blood pressure but he is no longer dehydrated. He will be having the ascites drained tomorrow.

I am so afraid that he is close to liver failure and he will never get strong enough to start chemo. I don't want my father to have to go through chemo if it's going to make him feel worse and it's not going to help him but I don't want to start hospice care either because it feels like we are just giving up.

I really wish there was more research on this cancer and better screening so it could be caught in the earlier stages when it is still treatable.

2 (edited by ukmember Tue, 19 Sep 2006 06:02:20)

Re: Running out of time?

Could your father go home and be cared for with the family?
If he doesn't need medical treatment then perhaps home is the best place to be.

From my experience with my husband, draining ascities that can lower blood pressure still further although it does alleviate discomfort and shortness of breath. 

What does your father say? my own experience is that I wasn't listening to my husband because I was desperately trying to find the thing that would make it all better.  My husband was very clear at the end that he just wanted us to be with him and to stop trying to feed him, find 'cures' etc.

Whatever you decide I wish you and your father all the best.
Patricia

Re: Running out of time?

finding out about cc is still overwhelming i am sure. talk to someone about your feelings i spoke alot of time to my sister. she was a strength to me after my husband died.  some doctors are very blunt and i hate that they have no manners sometimes.
talk to your father and ask him what he wants.

Re: Running out of time?

We are leaving for Mayo's in Rochester today.  Is that where you are.  My husband was diagnosed two months ago and he is 66.  He has mets to the liver and lung but no pain and only slight discomfort.  He is not a candidate for surgery and we are trying to get a second opinion from the one at Northwestern.  I will check this board and if you are still at Mayo's maybe we can meet up.   Our appointment is tomorrow and Friday at the Gonda bldg.  If you want to call me my cell is 815 531 9573

Re: Running out of time?

Thank you all for replying.

Patricia & HOPEFORUSSOON - My dad still has some hope and wants to start chemo. It's just hard right now because it seems that things are getting worse before chemo can even be started. For now, my family will support him in seeking chemo treatment if that's what he wants but I think my family knows that we will evently be needing hospice care. I think my dad knows this also but isn't ready to give up get. I just hope he can overcome these last symptoms...and I think he will with all of my family and his friends supporting him.

maryanne80 - I'm sorry to hear about your husband. It's good that you are getting a second opinion. The doctors at Mayo are excellent and I hope they will be able to give you different options. My dad is home right now but his appointments aren't until Mon at Gonda. What doctors are you seeing there?

Re: Running out of time?

We don't know who we are seeing.  We have tests today and get assigned a doctor tomorrow.  We may still be here on Monday depending on what they find and if they want more tests.  My sisiter Cathy works up her and lives here so we are staying with her and she is taking us to the clinic today to help us find our way around.  So sorry to hear your Dad is so sick.  They think Joe has had this for at least a year by the size of the liver tumor but not diagnosed until July 26th.  Keep in touch.  We will pray for you.  What is your Dad's first name.l  We like to pray by name.  Take care  Mary Anne

Re: Running out of time?

You're situation sounds very similar to my father's (he's 70 though, much older than your father).  He also was too ill with jaundice to receive chemo.  For about two months after finding out what he had (phase 4 cc, see my intro "we have had no time") we waited for the bilirubin levels to come down.  Finally, he had another proceedure as it was felt only half his liver was draining, as the other half was cut off from the drainage tube by the tumor.  Stents were inserted draining the two "lobes" of the liver into his intestine.  Since then his bilirubin levels came down, but not enough for the chomo treatment the oncologist wanted to give him.  Your units of measure are different than ours, but he was over 300 at the highest level and then came down to 100, we were told 20 to 30 is normal.  We then switched to 5FU as a chemo drug, which can be given with slightly elevated levels (at around 50 to 60). 

My father has had his third treatment today.  He is so week as his ascites and swollen lower half of his body saps all his strength, but we just aren't ready to give up just yet.  As the oncologist was very frank to say, if the patient) really wishes to continue with the chemo treatment, the doctor will agree to continue.   My father is presently in the hospital, receiving care, which at this point is only a draining of the ascites once in a while. But tomorrow we want to bring him home.

At this stage we really don't know if the chemo is helping him or not.  The oncologist warned me that the chemo was only going to maybe help stop the growth or spreading of the tumor, or maybe help the ascites.  But my father feels that at this stage, any action against the cancer is better than nothing, especially since we were so anxious to start chemo.  One good thing is that there aren't any side-effects of the drugs themselves that we can't deal with. 

I don't know if this is helpful, but I just want to give you my little bit of knowledge on the subject.  The past two months have been a whirlwind, and I can completely feel for you and your father.

Re: Running out of time?

Mary Anne - How did your appointments go? I hope they were able to offer something for Joe. It sounds like there might be a chance of aggressive chemo treatment for him. My dad's name is Yia. He's been hospitialized again and the doctors think that he may only have about a week or so left. He is starting to show signs of liver failure. Chemo at this point is out of the question. My dad says he's too tired to fight anymore so as soon as they set us up with hospice care, we're taking him home. Thank you so much for praying for us and I will keep you and Joe in my thoughts as well.

Mira - Thank you for your insight. I'm gald to hear that your father was able to start chemo. I also think that any action against the cancer is better than nothing. There's always that chance that the chemo help. I hope his condition will improve to continue the treatment. I will also keep you and your father in my toughts.

Take care. - Angel

Re: Running out of time?

Thanks so much for your answer angel. I don't know if you read our blog it is www.joesinformation.blogspot.com I tried to get it on this website but can't figure it out. anyway we saw the doctors, really the 3rd year fellow under Dr. Pitot (who we never saw). He recommended systemic chemo but if we wanted to wait a few months to start  in order to take a few trips that would be Ok.  Joe is still feeling so well we are questioning whether to do the chemo.  The side effects would really change his quality of life and he still continues to have a queezy stomach as his only symptom.
I am so sorry to hear about your Dad.  He is even younger than Joe and I know how hard this is for our children.  We talked to our kids yesterday about coming to Bonaire this winter.  We go there to scuba dive and Joe realizes this will be his last year probably if we even make it that far.
I am glad you are somewhere with hospice care.  I am a nurse and value what hospic does so greatly.  I will pray for Yia that things will be peaceful for him and that loving family will be with him.  God bless and keep posting.  We need some place to go to vent and get support.    Mary anne

Re: Running out of time?

Mary Anne - I'm glad to hear that Joe is still feeling strong. Chemo is a good option... if it doesn't help to shrink the tumor, hopefully, it would at least stop the growth. Have you guys thought about getting a 3rd opinion? Here's a couple of sites to look at:

Sloan-Kettering - http://www.mskcc.org/

MD Anderson - http://www.mdanderson.org/

I've done a lot of research and there doesn't seem to be a clear consensus on how to treat this cancer. It all depends on where you are in the country and what doctor you go to. This makes it even harder because you have to find the right combination of drugs but what works for one person doesn't necessarily work for the next. I think it's a good idea to have as many options available to you as possible.

Thank you for praying for my dad. Unforunately, he lost his battle yesterday to this disease. He was having a really tough time on Sat. night at St. Mary's. On Sunday morning, we asked to be discharged so we could go home. It was noon by the time we got to leave. We live in the Twin Cities so it's about a 1 1/2 hr. drive.

My uncle rode in the medical transport with my dad and my sister and I followed in our own cars. My uncle said that my dad passed away about half way through the trip. He didn't struggle and it seemed peaceful. I think he was waiting just to go home.

It's really hard to deal with but I know he's no longer in pain and he's no longer suffering. I got to see my father when we got home and he had a smile on his face. It's strange, but this actually brings me peace because perhaps he is/was happy. He was a great man and I'll miss him dearly.

Thanks again for your prayers. Keep in touch and I'll read Joe's blog from time to time. If you ever need to contact me, feel free to email me at avang21@yahoo.com. Take care. - Angel

Re: Running out of time?

Hi Angel,

I'm so sorry to hear about your dad . I do not know what to say but I'm really very upset .You say that he is not in pain and has a smiley face which should give a kind of consolation.
I was following your messages since you first wrote and I can see that my mum's case was very similar your dad's . My mum was first diagnosed by May and now she is bed bound , always sleeping and not eating , not talking . 3 weeks ago , her ascities were drained and since that day she is not feeling good and I know that we're closing to the end.

I 'm praying for your dad and your family .We should be strong.
Take care ,
Figen