Survival

nowonderwoman · January 2009

I come to this message board occasionally and always find it inspiring. This question may have been posted before but please let me know if anyone knows. My last PET scan in late October showed four new lesions on my liver. I have started my third series of chemo. This time Irinotecan, Avastin and Xeloda. My doctors have told me this is the only treatment available to me at this time and it is just that, a treatment to keep the cancer at bay until maybe a new drug or treatment becomes available. My doctor filled out my disability paperwork and stated that I am terminal.

My question is has anyone been diagnosed with disease this advanced? How long ago and what treatments are you on?

angelsbaby · January 2009

survival
husband dx nov 07 3c did 6 months of chemo that finished pet scan lit up in june of 08 cancer in liver kidney and stomach he has a agressive cancer chemo is his only option at this point.he has chemo every week eribitx campostar and fu5 no avastin because he has a new tumor in the sigmoide area dr said avastin can cause percforation of the colon wall so he can;t have that. the chemo is helping it from spreading any more. but he is terminal once he stops chemo the cancer will spread even more and he will die. i am so scared i am his sole mate married 35 yrs he is 52 yrs young so he has to keep going but he is tired and sick the chemo has made him weak he has all the side effects of the chemo. i don't want you to think i am giving up i am not but i am not the one who has cancer. i have read that stage 4 is beatable but that is not our case.the doc did the same thing filled out the ssd paper work and said he is terminal. my husband asked how lond do i have to do this and the dr said as long as he wants to continue. so really he has to continue with chemo if he wants to live but his living is hell with the chemo. so he is the one and only one that can decide.you are on your 3rd chemo god bless you i hope and pray that a new treatment will come soon

michelle

MoonDragon · January 2009

Sending love and prayers to
Sending love and prayers to both of you!

taraHK · January 2009

Diagnosed 6 yrs ago
I was diagnosed six years ago. After my initial treatment (surgery plus chemo), I have three recurrences (all in lung), each treated with surgery and chemo. I am currently NED but still on "mop up" chemo. I have a high chance of recurrence -- and my current chemo is, frankly, designed to postpone the interval till my next recurrence. BUT WHO KNOWS? One of these days, one of these drugs may knock the socks off those darn micrometasteses! Int he meantime, I feel the chance of "a new drug or treatment becoming available" is pretty high! Medicial science is moving at an astonishing pace, in our field. Meanwhile, I am enjoying life to the best of my ability -- especially my two sons, who I've had the blessing to see grow from boys to young men (well, smelly teenage young men but....!!).

I wish you all the best.

Tara

polarprincess · January 2009

hi
hi, i would also post this over at the colon club..i know there have been discussions on this over there. Http://www.thecolonclub.com. I think there is some kind of chemo that goes straight into the liver,(HIPEC?) but i am not sure what the protocols or requirements are for that. Good luck

msccolon · January 2009

I echo what Tara said
Colon cancer these days can be likened to a chronic illness. Chemo isn't fun, for sure, and it's an individual decision when enough is enough. Our loved ones have to live with our decision if we make it, and I don't envy them. However, I have been stage IV since my recurrence in 2006 and have gone in and out of chemo twice now. Life IS enjoyable when you are off chemo and is SO worth it! I can remember watching a friend go through his fight, he was about 5 years ahead of me in this battle; I wondered why he did it. It had robbed him of his means of making a living and he depended on his wife for everything. His comment was always that he was waiting for the cure that was right around the corner. He went to wait for it with God, but I don't doubt for a second that his willingness to continue the battle will help many in the future. I watched my mother lose her very short battle with lung cancer at the same time that I was in the battle of my recurrence and I saw how it affected my family. I realized this isn't an individual fight and I owed it to my family to do everything I was capable of doing, with God's help. I don't doubt that there's a purpose for me in this life and I pray that I am able to meet His expectations before He calls me home. I am looking forward to hearing Him say "well done", but not a second before it's my time to.
HIPEC is a Heated IntraPEritoneal Chemotherapy, and it's administered to the abdominal cavity. I have heard what you are referring to as chemo delivered to the liver, but I don't remember exactly what's it called. Just remember that the term terminal needs to be put on the paper to get the government moving on your disability at a faster than snail's pace; NOT a comment on whether you really will be leaving us sooner than later. Look at the SSDI as an opportunity to get back what you've paid in over the years working your a$$ off, and take the time to rest, heal, and enjoy your loved ones.
mary

CherylHutch · January 2009

Hang in there...
I'm sure when the doctors told you that "thisis the only treatment available to you at this time" and that it is a treatment to keep the cancer at bay until a new drug or treatment becomes available, probably scared you right down to your toes!

As for the doctor filling out the disability paperwork, he has to use some pretty harsh words, otherwise the insurance companies will do anything to drag out the procedure so they don't have to pay.

I'm on disability up here in Canada and although the protocols might be slightly different, when an insurance company is involved, it's pretty much the same everywhere. My long term disability insurance used to send out forms for the doctor to fill out every 6 months, wanting to know when I could go back to work. When I had the PET scan last March that lit up in my lungs and in my adrenal gland, my doctor said, "Ok Cheryl... I'm going to put some words on this form that are going to scare the pants off you, but realize that I'm just putting then on here to get the insurance company off your back. I can use these words because technically you are now Stage IV, but that means diddly squat as far as how long you are going to be around... but certain words will definitely make the insurance company back off". Sure enough, the words "Stage IV", "Metastacized disease" and "advanced colon cancer" did the trick with the insurance company. They are now bending over backwards to make my life easier for me. Hehehe.. .they were going to send me another set of forms for the doctor to fill out since it is coming up to a year from that PET scan, but then when she found out I was scheduled for a Lung Ablation procedure, she sent me a letter and said that I have enough on my plate, she will wait until the end of February to send out the forms, and no hurry for me to get them filled out if I'm not feeling up to it

So, try not to let the doctors' words upset you. I know, easier said than done. It's fine to hear them when he's discussing someone else... but not when he's discussing YOU!

Keep your attitude positive, and don't believe for a minute that you are anywhere near finished the journey yet!

Huggggggs,

Cheryl

dorookie · January 2009

20 Months
I too had the crap scared out of me. My ONC did one of those letters for SSD and it said I had 20 months to live. Now let me tell ya it scared me beyond words, but when I saw my ONC he explained to me that he did it because it was needed to get the SSA office off their butts and get what needed to be done done! He then told me that he didnt think I would die within 20 months, he did remind me that I was stage 4 and that what he wrote were statistics(sp) and that my case was different(we are all different and each situation is different)and he felt good saying that he thought I would be around longer then 20 months. I was so relieved to hear him say that. No one knows when its your time except God and when he decides its your time, no one can do anything about it either, but until that time, we just have to do all we can to enjoy and live.

God Bless
Beth

jcavanaugh · January 2009

Hello:

My dad is in the same boat. I do not know the number of mets in liver and lungs but his doctor recently told him that he had 6-12 months. He is on avastin and xeolda. We have been here before. When he was diagnosed as stage IV in 2002. We were told that he had 2 years to live and the last year would not be good. He is still here 7 years later. So, I do not really take these statistics too seriously. The only difference is that we are not operable at this point. All of the other times that he went on chemo, we had surgery first. We have been in this state for 2 1/2 years. We started on avastin, then switched to vectibux, then switched to erbitrux and 5 Fu, and now we are on xeolda and avastin. He should also be on oxiplatin but he had an allergic reaction to it. He had this drug back in 2004. But now, he has a reaction to it. Hope this helps. I have not given up hope because even his doctor said that he is not God and does not know when anyone will go. Who knows - maybe this treatment will work and he can get some kind of procedure done down the road. You never know - I have heard of a lot of people being told they were not operable and a year later they were.

Jennifer

hollyberry · January 2009

jcavanaugh said:
Hello:

My dad is in the same boat. I do not know the number of mets in liver and lungs but his doctor recently told him that he had 6-12 months. He is on avastin and xeolda. We have been here before. When he was diagnosed as stage IV in 2002. We were told that he had 2 years to live and the last year would not be good. He is still here 7 years later. So, I do not really take these statistics too seriously. The only difference is that we are not operable at this point. All of the other times that he went on chemo, we had surgery first. We have been in this state for 2 1/2 years. We started on avastin, then switched to vectibux, then switched to erbitrux and 5 Fu, and now we are on xeolda and avastin. He should also be on oxiplatin but he had an allergic reaction to it. He had this drug back in 2004. But now, he has a reaction to it. Hope this helps. I have not given up hope because even his doctor said that he is not God and does not know when anyone will go. Who knows - maybe this treatment will work and he can get some kind of procedure done down the road. You never know - I have heard of a lot of people being told they were not operable and a year later they were.

Jennifer

Same boat
I have had 4 surgeries, the last being total APR with colostomy. I was given 6mos., as the cancer spread to liver, lungs, kidney gallbladder, chest wall and peritoneal region, I am now on Taxol, Avastin and Carboplatin. It's been 14 months and my CT from last week was stable; no new mets! Our Docs do the best they can, we do the best we can, and then we leave it in God's hands; only He knows when it's time to say goodbye to our loved ones and return home to Him. I do have days when I am so sick and tired, that I am ready to quit, but I too, have a husband and 3 kids who want me here with them. They are always willing to help ( well, almost always) and I cannot give up because I owe them my very best. I pray that we all get that miracle treatment that is just down the road; in the meantime, I pray for all of you to have more good days than bad and that you are surrounded with love and peace.
Blessings to all,
Hollyberry

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