CSN Login
Members Online: 5

You are here

is this the end?

midnte0708
Posts: 166
Joined: Jul 2005

My dad (66) has been on chemo for 3.5 years non stop since being diagnosed with stage 4 colon cancer with inoperable many many mets to liver.

Great results with FOLFIRI + Avastin for 3 years...liver tumors stable entire time with some shrinkage but recently developed new lung mets(very small) in Oct 08.

So then doctor switched to FOLFOX (no avastin) for the last 6 months. Last week scan has showed tumors in liver growing, doc sent him home and told him there are no more chemos to try and gave him pill form of F5U and told him he had 8-12 weeks to live.
Also, said maybe the pill F5U would trick the cancer "you never know" he said.

I am currently trying to get him a second opinion at Roswell but wonder how the liver tumors could have grown so fast (he gets ct scans every 3 months).
I am not a doctor but I wonder if a liver abscess could show as a tumor growing??? maybe I am wishful thinking and surely the doctor would have covered every base before telling him to get his affairs in order.

any thoughts will be appreciated. I'm still in shock, denial, etc.... The doctor did give him 1 year to live in November 2005 so he has already beat that by a lot but I still can't believe this unfolded so suddenly when he has been stable so long.
Did anyone ever have good luck with taking pill F5U only?? this seems to me like a longshot

Thanks
Sue

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

Sue, this is all new to me so I have no answers, but I'm going to pray for your father and family right now.

God keep you safe,
Diane

midnte0708
Posts: 166
Joined: Jul 2005

Diane,

Thanks so much for your prayer.

Sue

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

I am so sorry to hear your father is having such a hard time with this beast. I would say DEFINITELY get a second opinion; third and 4th if you have to! Go to a large cancer center that sees your father's disease many times a day! This is assuming your father WANTS to continue the fight! Your medical oncologist sees chemotherapy as the only option and it definitely isn't. Your father is lucky to have you advocating for him, Sue. When we are so sick it is sometimes too hard for us to do what's necessary; that's when our loved ones become so important. They can pick up the stick and continue the relay.
mary

midnte0708
Posts: 166
Joined: Jul 2005

Mary,
Thanks for your words of encouragement. I am trying to stay strong. It's hard because I live 1000 miles away but I'm making arrangements to fly up with my 4 year old son on wednesday. I can only hope that the 2nd opinion appointment can be made quickly. I'm just afraid they may say it's too late in his weakened condition to do anything...but I'm trying to be positive.

Sue

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Sue,

Your father can get a second opinion quickly. You need an NCI Comprehensive Canzer Center - here is the link: http://cancercenters.cancer.gov/cancer_centers/cancer-centers-names.html but you will need to copy and paste. When I called for a second opinion (I self referred) I was in within days. Keep calling and bugging if you need to. Schedule with more than one facility now if possible. If your father wants to continue, get as many opinions as you can as quickly as you can.

I was diagnosed stage 4 August 2007 and have had folfox, folfori and erbitux and currently on: mitomycin,avastin and xeloda. Xeloda is the pill form of 5fu and it does, often times, react differently within the body than 5fu. Is your father in liver failure? Why do they think he will decline so quickly? My liver is still not operable (surgeon was talking months for me) but I did just complete 5wks of liver radiation which I expect will extend my life considerably and will probably have various forms of ablation,embolization,more surgeries, hai pump....the list goes on. There may be other options for your father, but he needs a TEAM: medical onc, surgical onc and radiation onc. No more chemo doesn't mean no more hope. There are dozens of treatments that may be available but you need to find them!

YMMV

Kimby

midnte0708
Posts: 166
Joined: Jul 2005

Hi Kimby,

I don't believe he was told he was in liver failure but my mother and brother comment about the coloring of his skin and he is tired all the time. Plus when the doctor gave him 8-12 weeks I probably assume that it's beginning. He just came off a cycle of FOLFOX and I know that is wiping him out but he is more weak and exhausted than usual according to him.
I just got off the phone and he wants to fight,,,he wants procedures..appointments etc....My new mission tomorrow is MORE APPOINTMENTS! Up until a few weeks ago he has been able to work 6 days a week full time, live a semi normal life and still gets his chemo every other week for the last 3.5 years. Even his doctor has been shocked.

Wow, you have been through alot and have such a great attitude! I wish you the best, you sound like a real fighter!

Thanks sooooo much for your ideas and inspiration!

Sue

kimby's picture
kimby
Posts: 804
Joined: Oct 2007

Sue,

Please keep us up to date with your father's progress. He is so very lucky to have you on the team. Let us know if there is anything else and what we can do to help.

Kimby

choihe
Posts: 10
Joined: Dec 2008

My husband is currently going through 8th Chemo (8th out of 12). I’m really concerned if his body can manage to complete 4 more treatments. He looks really weak today. He can't eat anything at all. My son is saying that he should stop Chemo, but I’m not sure what is a right thing for my husband to do at this point.

He wants to still go on treatment as far as he can, but I wonder, I should advise him stop Chemo if his health deteriorates further. What possible outcome would be if he does not complete all the recommended 12 treatments (may be stop at 9th or 10th)?

I would like your inputs and advices.

Amy

midnte0708
Posts: 166
Joined: Jul 2005

Amy,

There were days my father couldn't get out of bed and did not eat often. I don't know what kind of chemo your husband is on but it really takes a lot out you. My father was also able to work full time with chemo, he had bad and good days of course.
Considering stopping chemo is a discussion that needs to be made with doctors.

Also, if you start a new topic and post more specific details about your husbands condition you are likely to find lots of input and more advice than you can imagine.

They may not see your message here in this tread.

Sue

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I don't have any good answers for you, but I do want you to know that you and your dad have my prayers.

*hugs*
Gail

aluckylady's picture
aluckylady
Posts: 16
Joined: Mar 2009

Sue,
Wishing you and your son a safe journey as you travel to be with your father.
May you find other positive opinions and alternatives to what he has been given.
You are a good daughter. I will be praying for you. Stay strong!!!!!

midnte0708
Posts: 166
Joined: Jul 2005

Thanks, I wish you the best also on your treatment tomorrow. Avastin did wonders for my father. I'll be praying for great results for you!
Sue

midnte0708
Posts: 166
Joined: Jul 2005

Thanks so much Gail!

kmygil
Posts: 881
Joined: Feb 2007

Hi Sue,

If your father wants to continue fighting, get as many second opinions as possible, preferably at a major cancer center. You are a wonderful daughter to him. Praying for all of you...

Kirsten

midnte0708
Posts: 166
Joined: Jul 2005

Thank you Kirsten, I appreciate your prayers!

Annabelle41415's picture
Annabelle41415
Posts: 6694
Joined: Feb 2009

My prayers are with you, your dad and family. Stay positive for him.

Kim

midnte0708
Posts: 166
Joined: Jul 2005

I will try, it's not easy. Thank you.
Sue

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

I'm sorry to hear of you Dad's situation. He did prove them wrong once, why not again. I've had good luck with the Erbitux for the past 3+ years that has helped with dealing with lung mets. I would CERTAINLY get that second opinion. I also happen to feel that it is not a good thing when doctors basically put an expiration date on us. They don't know. They were wrong the first time too. I (personally) think it's reckless on their part.
I have not had experience with 5FU in pill form, only as a IV and it's worked well.
I wish your Dad and you the very best Sue.
-phil

midnte0708
Posts: 166
Joined: Jul 2005

I really don't know why my father was not put on another chemo to try (he has only been on two different regimes), unless it was because he is so weak now, but that could be cumulative chemo, he has a urinary track infection, and maybe a touch of a virus all at once. I'm hoping he bounces back enough to get to a 2nd opinion appointment. Right now he is not eating and sleeping all day.
Roswell Cancer Institute has all 3 volumes of his medical history, I hope they call me soon for an appointment!
I agree with the expiration date, I don't know why they do that it is certainly enough to make you want to give up.
I'm glad you are doing well with the Erbitux,
Thanks for your good wishes!
Sue

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Sue,

Definitely get another opinion, at a major cancer center. Where do you live? It is not likely that he has a liver abcess unless he is having symptoms such as a fever too. The color change is probably due to jaundice from the liver not functioning fully. Keep being persistent. There is no guideline for the doctor to determine how long someone will live. Your dad could outlive the doctor.

Dick

midnte0708
Posts: 166
Joined: Jul 2005

My Dad is in Rochester. I believe the only major cancer in the vicinity is Roswell in Buffalo. I will try to be persistent! I called his oncologist office today and they told me to call back on Thurs morning to talk to the onc he has been seeing since 1993 (first discovery of colon cancer with no mets). I don't expect him to talk much due to HIPA but maybe he could recommend something.

Sue

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

Did your Dad have colon cancer in 1993 Stage 1 and then again in 2005 at Stage IV? He certainly has been a survivor so far! Almost 16 years!!

Were there no scans on a regular basis all those years? No chemo in 1993?

I think you're a wonderful daughter to be working so hard on finding another option for your Dad. He's a very lucky man to have you!

As one hand reaches toward your Dad in prayer, another reaches up....

Diane

midnte0708
Posts: 166
Joined: Jul 2005

Yes, he had I believe stage I or maybe stage II back in 1993 (found huge tumor in colon and surgery to remove). There was follow up chemo, back then only F5U+ leucavorin. Then he got another tumor in colon in 1996, more surgery and F5U. Then 6 months check, 6 months, etc, etc....I believe he got very lax about it in the early 2000's. He was busy with work and hated to take time off work for a check probably.
Then in 2005 after feeling weak and tired for a while I encouraged him to get checked and 40% of both liver lobes had tumors. Doc gave him a year to live on November 10, 2005. He worked full time the whole time barely missing work and would go in a half a day on saturday because he felt bad he took time off every other monday to get his chemo. Then went back to work with his chemo bag hanging off him.
I wish I had done more sooner, reminding him of appointments or making 2nd opinions....etc...

I'm hoping for a miracle.

Sue

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

Sue, My doc had me put down a list of names they could discuss my treatment with so I listed our four kids, hubby (of course), my mother, etc. Have your Dad fax across a note tonight, if possible!

I filled my list out when I first went to the office. You possibly could already be on a list.

Praying for your Dad tonight. I think 16 years shows what a fighter he is and he may just win this battle too!

God is STILL in the miracle business!
Diane

midnte0708
Posts: 166
Joined: Jul 2005

I really appreciate your kind words and thoughts.

Moses
Posts: 4
Joined: Mar 2009

I am very sorry to hear about your dad's situation. My father is in a situation almost like your dads except my dad has just began his fight once again with colon cancer(stage IV) several months back. I will be praying for you and your father and family. Any and all things are possible, so I will be praying for your miracle. The Lord does work in mysterious ways. Take care and keep hope alive.

Roy

midnte0708
Posts: 166
Joined: Jul 2005

Thanks Roy, I will send prayers your way as well.

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Just to let you know your dad can give the doctor a release to discuss his case with you. Your dad have to put it in writing and then fax it to the doctor.

Dick

midnte0708
Posts: 166
Joined: Jul 2005

I may have him do that, is there a special form? He also has a doc appoint with regular oncologist April 3rd so I hope to go with him also.

Sue

vinny3's picture
vinny3
Posts: 933
Joined: Jun 2006

Some offices have a form but he could just write that he gives permission for Dr. X to discuss his medical condition with you and add his signature.

Dick

mindy10
Posts: 183
Joined: Jul 2005

Hi Sue, sending prayers your dads way. He is an amazing man. I remember talking to you when both you and my dad where diagnosed at stage four and my dad passed away in 18 months and here is your dad 3 years later. He is a fighter. If you need to talk feel free to email me. Mindy

midnte0708
Posts: 166
Joined: Jul 2005

Hi Mindy, I sent you an email. Nice to hear from you.

msccolon's picture
msccolon
Posts: 1956
Joined: Oct 2004

Every time I see this thread topic I think of the Jesus Christ Superstar "... the end. This is my blood you drink, this is my body you eat..."
mary

Monicaemilia's picture
Monicaemilia
Posts: 455
Joined: Nov 2006

Hi Sue: I don't think you mentioned whether your dad had tried Erbitux and Irinotecan. If one is KRAS Wild Type (which the hospital can check for you), Erbitux can work synergistically with Irinotecan (even though your dad is already refractory to it) and I have seen some pretty amazing results. And I would definitely get a second opinion. My prayers are with you and your dad. Monica

snommintj's picture
snommintj
Posts: 602
Joined: Mar 2009

When I seemed to run out of options I sent all of my info to wake forest university, I forget the name of who I sent it to but if you call they will tell you who to send it to. According to the first few Drs I spoke with my situation was pretty bleak, noone gave me a chance little less a plan of action. I overnighted the information to WFU hospital. Within 48 hrs, half a dozen Drs had called and informed me of possible treatment options. I took that info to Drs in my area until I found Drs that were up to date with the most current treatments. Get those tumors ablated, cyberknifed, resected, therosphered, or what ever else is available.

To help strengthen the liver, try milk thistle, juice 6-8 fresh lemons(everyday), and resveratrol(500+mg per day,get at walgreens). This combo along with daily 400mg vit-d boosted my liver into overdrive. I had as little as 25% of my liver at one time, I credit the above for helping me through.

hoagiemom's picture
hoagiemom
Posts: 87
Joined: Feb 2007

Hi Sue, I'm sending you my prayers for your father. I go to Roswell and love it there. Who is his Dr? I'm stage III so I don't know too much about the regime he is on but I just wanted to let you know that Roswell has been wonderful for me and I hope they can help you. Keeping you in my prayers.Michelle

midnte0708
Posts: 166
Joined: Jul 2005

Hi MIchelle,

My Dad's appointment is with Dr Marwan Fakih. Not sure if you are familiar with him . He has been highly recommended to us.
I'm glad you are happy with their care.
Sue

midnte0708
Posts: 166
Joined: Jul 2005

I will try this and see if I can get my dad to take it. Thanks, I was just wondering if there was anything I could give him to help his liver function better. I hope it is not too late for him. I can't believe you got such fast action from WFU. It seems like I've been jumping through hoops for the past week and still playing the waiting game.

Sue

Subscribe to Comments for "is this the end?"