I have had Stage IV Colorectal cancer for almost 3 years

[pjmanes]

I'm on my second doctor. I went to Siteman Cancer Center first which my research said was pretty good. They said maybe 20 months to llive. It's almost 3 years later and I'm going to a much more personable friendly local onocologist. However no one will talk about a cure. I've done chemo for almost the whole 3 years - still doing it every other week on Fridays. Do you think I need to get a 3rd opininon from one of the national clinics - like Sloane or MD Anderson? Would my insurance pay for that usually? My doctor acts like I should just be grateful for what time I have gotten and am likely still to get since I feel relatively OK. I am grateful but frustrated - I mean for 3 years they have been telling me less than a year left (SSDisability even agreed with them). Shouldn't there be something more that I could do? Some kind of remission or cure even? My mets are to the lungs -25 tumors spread evenly throughout both lungs so they tell me I'm not a candidate for surgery. What about a double lung transplant? Anyone have any advise on whether I should be doing something more? Phyllis

[missjv]

hi phyl,
no doctor can tell you how long you are going to live cause they do not have a crystal ball. as far as lung transplant that can't be done with metastatic cancer because it is systemic and can pop up somewhere else if the chemo is keeping you going then thats great. are tumors growing? shrinking? have you been on avastin?

missjv

[noonie2]

I want to know also..........what type of chemo have you been taking?

[bossan]

PJ,

I was 45 when diagnosed (April, 05) stage iv, mets to liver and abdomen (read my story, link on the bottom). I've been told the same thing and I'm on chemo only for close to 2 years and I'm always fatigued but able to function etc...

I once said to my onc that I'm fatigued, feel terible, depressed, and she asked me do you ever feel okay, even for a while? I said I do, and she looked at me like well, isn't that good?

She's not my onc anymore

We should talk, I don't meet too many chemo only people. We have our unique share of horrors I'm sure. You can PM me if you like.

[pjmanes]

I hope this works. I am almost computer illiterate and I've typed this 2 times before but it doesn't seem to want to submit. So one last try and if you get 3 emails saying the same that is why. I take 5-FU, Lecovorin, Irinotican for 3-4 hours every other Friday at the doctor's office. I take a half hour of Avastin after that at the hospital next door. I am exhausted all the time and in some pain due to what the chemo has done to my already bad degenerative disc disease. I would like a chance at a cure or at least remission - time off for good behavior- or something rather than just this "stable" business that lives me unable to fully participate in the life I used to have. I know I am lucky to still be alive but I'd like some hope or promise. My doctor never talks about time - I can't get a word out of him -except that things are the same. Well, same to me says I am still dying and not regenerating life. I want a chance at something more. Does anyone understand? Phyl

[pjmanes]

I also have 26 lymph nodes removed and 12 were cancerous when they removed my colon tumor -which was amazing small to have caused so much trouble. They have mentioned at times seeing other what may be infected lymph nodes in my left shoulder. Why they don't take these out if there are there I don't understand.

[missjv]

hi,
well it sounds to me you need another doctor who will be more aggressive. why would they not test lymphnodes in shoulder?i don't get it. i have always heard and my doc has told me the best way to get rid of cancer is surgically remove it if possible. i would get another doctor.


missjv

[Holly]

Phyl,

Welcome to the Colon Club and congratulations on your survivorship! About your medical team...I encourage you to be proactive in the management of your health! Ask lots of questions and demand answers! Also, I encourage you to get a second, third, fourth opinion until you have found a medical team that you respect, trust and value and you know without any doubt that they ae batting for you. It is unfortunate that your physician told you that you had 20 months to live. However, know this is not uncommon. I was told that my prognosis was poor, very poor and was not expected to live past December 2003. Not only am I alive but I am stage IV without evidence of disease!

Trust that God has his arms wrapped tightly around each of us and....All things are truly possible!

Holly

[pjpeace]

Unfortuneately from what my Onco. was saying if they are afraid they can't get all the stuff out then they won't do surgery. I'm not exactly where you are at but i completely understand the frustration. i was really wanting to just get that second surgery asap but my tumor had to shrink...so after 12 cycles it has shrunk to that size. but i've got enlarged lymph nodes around the tumor site and my doc said if they can't get it all surgery is not possible. but the surgeon said if it got down to certain size surgery is possible...hope they can do it. I have no idea what they'll do if not. i hate the 'wait and see' thing. I'll stay on avastin if they can't do surgery. will find out next wednesday if it is possible.

but you never know. keep asking your doc questions. the question i asked was 'what is our game plan'? getting more opinions never hurts. I go up to IU (where lance went) and the doc's there are excellent. i hear md anderson is good and of course mayo clinic from other surviviors. go where you feel most comfortable. i called and asked my insurance company about IU and it's covered. just call your insurance co and see which places they will cover. i knew another survivor that it was going to be unGodly exspensive if she got her chemo through mayo clinic but if she did it locally it would be covered.

don't give up! keep fighting! you will find a way! When God closes a door he opens a window somewhere

[eitter]

Phyllis,

I will answer your question about a second opinion. I went to Sloane Kettering for a second opinion, saw Dr. Schrag and she was Awesome! Iwas mis-diagnosed etc....long story, you can read on my website(easier then explaining over and over).

I work for the federal government and have BC/BS, I live in Arizona. I would have paid to go to Sloane Kettering, I think it was worth it, but my insurance PAID THE WHOLE VISIT and it was well over $5000. It was over $5000 because they actually got my path slides and read them and did a complete workup.

They basically said I had colorectal all along..early on I went to Mayo Clinic for a required second opinion by my onocologist and they told me I had a form of ovarian cancer, they wee WRONG, did 3 months of Chemo for that kind of cancer and my tumor DOUBLED. Very sad story.

Anyway, I loved Sloane Kettering and wish I could be their patient all the time.

We all have our own cases....I just can't imagine going through Chemo for 3 years. Granted I am not stage IV. How much have you looked into alternative methods? At this point I think it would be something to look into.

Please keep me posted!

God Bless,

[pjmanes]

Thank you for all your answers! I was really feeling down and getting your messages uplifted me. I did check with my insurance company and MD Anderson is covered 100% without a referrel. Of course when I got on their web site they mostly talked about what study you would like to do and seem to mostly concentrated on first line treatment. I don't know if they'd want to see me after 3 years of treatment. How do you get hold of a doctor to get these questions answered?

My gut is telling me that Sloane Kettering if the place to be but my insurance only had the hospital and not the cancer center. They said they would need a doctor name which one of you gave me before so now I can go check on that and she is Dr. Schrag is covered by my insurance.

I did not check to see if the Mayo clinic was covered - does anyone have the name of a doctor there or at MDANderson? I am just afraid that no one will want to see me after 2 doctors and 3 years of study - a year of which was in a study already at SIteman. THey kicked me out of that one as I had a TIA on top of really low counts and several hospitalizations in the month of April. Got me off their schedule so they couldn't use my results anymore. Whatever you do don't get sick when you are being treated for cancer!

Anygain thanks for all your reponses and give me any names that you might have. PJ