mCRC STAGE IV OR RECURRENT PATIENTS thread - ONGOING

[pollo65]

Ashlee, I guess i could have PMed you but maybe more than just myself could use this answer. What exactly is a trust and how do you set it up? I have my cremation paid for and have a will of sorts, but would really like to have something more concrete and legal and being never married I have a jumble od folks and causes I would like to leave (a little) money and I need my critters taken care of.
pollo 65

[Ashlee H.]

I know someone will be able to explain this a lot better than I can. A Trust is a legal document regarding your assets. While you are alive, you are the Trustee for the Trust. Mine was very basic because I have no spouse or children. You also do a Will - but the Will basically is to make sure if you forgot to put anything in the Trust, it will become a part of the Trust. The Trust is where you list who gets what and how things should be handled. My banker was very helpful in getting my accounts into the Trustee Name (you can name it whatever you want - most call it "your name" Trust. I transferred my vehicle and home titles to the Trust. In the Trust, you name who want be be Trustee once you die. I've listed 3 people (if the first doesn't want to do it, then it goes to the next person). I have spoken with the person who is to be my Trustee, so she knows my wishes in addition to it being in writing in the Trust. My CPA for taxes has a Financial Business, so she did the paperwork for me for free. However, you can buy books that have preprinted forms in them. I know Suze Orman (Financial person on TV) has one on her website you can download (usually free or a very small free). Of course, the more you have, it gets a little more complicated. But, it does not have to be expensive and makes it so much easier for others once you pass.
My neighbor went to an Attorney to have her Trust set up. He charged her almost $4,000!!! Oh sure, he put it in a fancy leather binder, but it was totally overdone. He listed everything possible (I'm sure it was from a computer program). There was no need to list farm animals and vacation homes, etc. I became the Trustee for her and the attorney kept milking money for doing nothing, so I fired him. My friends beneficiary was in Europe, so it was more complicated due to tax laws and such. But, the two most valuable people that help me were her banker and the tax person (your last taxes need to be filed, and then everything gets filed under the Trust once you die, and you taxes have to be filed for the Trust).
I'm doing my best to give a lot of my things away to people who want them. Amazing how cancer makes you not want "things" and clutter in your home.
I'd been looking into Trusts for years. I've had some past issues where I could have died, so I started thinking about it. I'd read the books on Trusts, and just get confused, so I'd put it away, planning to deal with it later. But being DX with Stage IV cancer made me actually take action. It's so nice to have it done, knowing any money I have will go to people/organizations I want and not be taken by family members who haven't given me any support through the cancer. That is one thing about cancer....it gives you time to think about death and make some plans.
I also have paid for my cremation and such. I've given people the 800 number they will need to call so someone will come and pick up my body and deal with it. I want no service, so I just need to be sent off to the fishes in the Ocean. I would really like to go out like the Vikings - put my body on a raft, send it off to sea, and shoot burning arrows at the raft!

[stevieb]

Update: At MDA, post rectal and single lung met resection. Everything looks good so far! Four more Folfox treatments and then liver resection of solitary lesion and iliostomy reversal at the same time (hopefully) in July! Love this thread so much! Hopefully others on here will share more good news!!!!!

[juliej]

Excellent news, stevieb! I had mine in the opposite order - liver resection and LAR first, then three months later, double lung resection and ileostomy reversal. Make sure you walk as much as possible to speed up the healing. And use your incentive spirometer to strengthen your lungs and clear out any fluid left from the surgery. I hope your recovery is as quick and uneventful as mine was. Congratulations!

[betsydoglover]

Hi Kathryn -

I am so glad you started this thread. I am one of the lucky stage 4 ones (so far) - only one recurrence and 4 years NED since that one - almost 8 years since diagnosis. The frustrating thing for me is that everyone tells me I am "cured", I "don't have to worry", "take it easy" etc. My kids, my husband, my friends. I know I have done really well, but as my oncologist said when I recurred in 11/08 - "Well, we haven't cured you." I often feel guilty posting my results because they have been good to date, but I still live from scan to scan. Right now I am coping until mid-June.

Take care all,

[scottyg]

I have been following this thread for the last few days. I am really relating to a lot that is being said here. First and foremost is that I feel very lucky in that my journey so far has been fairly straight forward so far. I was dx, had 6 chemo, surgery, then 6 more chemo then done. Pretty straight forward. I did go to the er once, I had some pretty severe chest pains. I never told anyone that I went, until now. I finished treatment last july. From then until now I have been waiting for the other shoe to drop. I am having a hard time thinking that that is it, all done. If I listen to family and friends I am cured. My onc tells me stuff like I have a 70% chance of it coming back and a 40% chance of making it to the 5 year mark. This is so much better than when I was first dx. It still weighs heavy on me. I am doing so much better than others I feel guilty about it. I have a ct scan scheduled for this monday. Part of me feels like if this is going to come back then bring it on, lets fight again it has got to be easier than this damn waiting. Then I beat myself up for in effect wanting cancer. How messed up is that? Screw it! Today the sun is out and I am going for a walk because I can.
Scott

[Kathryn in MN]

For any of you mentioning that you feel guilty, or aren't sure about participating much because you aren't enduring treatments right now - STOP! Do NOT feel guilty!!! We are absolutely thrilled for you!!! And you give the rest of us hope, so PLEASE keep posting your good news. We need a balance of good to help with the bad.

And all of us understand the stress of worrying that it might come back, even if you've had a few good years. I don't really have that stress, as I KNOW it always spreads and grows if I take a treatment break. For me it is just a matter of how much and where it goes. Sometimes I wonder if that is possibly mentally easier than not knowing... it sucks, but at least I usually know where I stand, and what to expect for a final outcome some day.

[Asterix]

Well, I saw my onc last night and got my PET results. The two original lymph nodes that lit up on my first PET but then became normal are back. No signs of cancer anywhere else. This is probably the best bad news I can get since we knew something was going on from the raised CEA. Because the cancer has stayed contained in the same lymph nodes, the onc is getting a surgical opinion. Cutting it out is now a worthwhile option since it's been 18 months since diagnosis and there is not widespread involvement. I feel pretty good about this - I've dealt with all the bad feelings when I knew the CEA had risen, now I know why and that there is still a curative option to pursue.

[Kathryn in MN]

That is wonderful if your nodes are in a resectable position. I have a friend (just saw him last weekend) who had just one node light up and biopsy confirmed malignancy. This was after his original treatment when they thought he was IIIc. He had the node resected and did 12 FOLFORI + Avastin, and he has been clear 4 years now! Surgery is always our best shot at a cure if we have one.

[CRguy]

For any of you mentioning that you feel guilty, or aren't sure about participating much because you aren't enduring treatments right now - STOP! Do NOT feel guilty!!! We are absolutely thrilled for you!!! And you give the rest of us hope, so PLEASE keep posting your good news. We need a balance of good to help with the bad.

Taking the colorectal words right outta my colorectal mouth .... Ewwww ...sorry, did NOT mean that to sound that exact way it did !!!

I agree 100% with you Kathryn. We all want to hear our friends here are doing well, even if we, ourselves are faced with new challenges. When I was in active Tx and monitoring, I was all over this forum like an allergic rash. Now I am on the borderline of being kicked out to "follow up" .....
WTF ever that is for us Club Four members....I have been better behaved and kind of sitting back to jump in, only if I can add something to the conversation.

What I think I failed to realize is : whatever Stage we are, whatever crisis we engage, whatever challenge we meet...... IF we have BTDT, we do have something to offer all CClubbers. JMO.

Thank you, YES, thank you for starting a topic here which we all may not live in day to day right now, BUTT.... need to know about.

Always on the Journey
Always In Harmony
CRguy

[Ashlee H.]

I'm curious - by the time you've reached our point....how many of your ONCs tell you that you aren't textbook and they are pretty much just trying different things to see what works. My ONC said I just don't react to treatment like most people. From what I've read in a lot of your posts...many of us just don't follow the cancer rules - which may be why we are here longer. I often wonder if I had just gone with my first ONC's estimate of 6 months, and did not come to this support group and get so much knowledge - would I have just gone along, been within textbook guidelines, and died within 6 months. I think because we push and question, our survival rates are better. We just don't roll over and think the doctors know more about our bodies than we do. My first ONC was so forceful about getting into genetic research (which I did not do - no family history, no kids - why do I care?), but thought nothing of sending me for a GP for my surgeries (which I also did not do). So glad I changed ONCs!
As far as positive thinking - I think it does help you get through the day and deal with the disease better, but I don't think it has anything to do with fighting the cancer. I've known way too many people that remained positive until the very end. I bring this up because so many people bring up to me what a positive attitude I have...and they just know I'm going to beat it. Heck, I'm still here and want to enjoy life - why punish myself by playing the "poor me" game. Life is different these days, but it is still good.
-Ashlee

[annalexandria]

Well, like others here, I hesitated to post on this thread, as I've been out of active treatment since the end of 2011, and I rarely post here at the Club anyway, but thought I would say hello. For me, surgery has been the big lifesaver. I was at a point in the fall of 2010 where i was given what was essentially a terminal prognosis. I was so drugged up (in the hospital, facing emergency surgery), that I really didn't take in the reality of what my surgeon was saying (way too much crap lighting up on the PET, he felt he wouldn't be able to get all of it and chemo hadn't been effective for me). But my poor husband and kids, when they got the news...the suffering they've had to go through because of this stupid disease has just been insane.
Luckily, I have a great surgeon, surgery went better than expected, and since then I've only had to do two more surgeries, both for removal of small mets that popped up in a couple of different places. Five surgeries in all, but finally NED, at least for now. Got my port out last month, and have moved out to PET scans every 6 months, as long as I stay symptom-free.
And btw, Ashlee, I've been told that I'm an "outlier" in every way...never react to chemo, drugs for side effects, or anything else in the way I'm supposed to. But maybe being an outlier is good in some ways. I recently looked up prognosis stats for my particular tumor type (not the standard for crc) for the first time...5 year survival rate is abysmal, even worse than it is for adenocarcinomas. Guess I'm glad to be an exception to the norm in this case. Hugs to all~AA

[Kathryn in MN]

My pleural fluid was benign - no sign of cancer cells. It had some inflammatory cells. Hopefully after being drained it will stay clear.

[Bev G]

Kathryn, I am really glad to hear this great news! Just curious: Were you at really different elevations in Mexico vs when you got home?

xox to you,

Bev

[dianetavegia]

VERY happy to hear that Kathryn!!