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Stage IV Diagnosis - How to get on with life?

GoBucks
Posts: 28
Joined: Dec 2011

I found out in Aug I was with stage IV at 48 - emergency surgery for blockage and removal of tumor from ovary. I'm struggling getting to living 1 good day at a time. I'm luck treatment has been relatively easy and I just started Avastin. Don't know if it is working till scan in Jan. Just scared and looking for advice.

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

GoBucks,

I'm gonna' take a stab at this and say you're from the Miluakee area? I'm 50, so you're in the same zip code age wise as me - do you remember Lou Al Cinder? Or the 'Big-0', Oscar Robertson?

How to get on?

As with most things in life, we get on by doing the things that we think we cannot do. The best that any of us can do is fall out of bed and put one foot in front of the other and do the best that we can do.

First, just realize that surgery and treatment is "major trauma" to the body - and the mind ends up hitching a ride as well. It's tough from all aspects. The biggest thing you can do is throw out expectations at this point.....and forget about your body following the calendar.

Cancer does not know time and is on a schedule all of its own. It's up to us to make the adjustment and get in step with him. He's calling the shots right now and the best thing you can do is keep your spirits up, so that you can use all of your energy for fighting.

There's just so much about the subject of cancer, that if I sat here and told you a bunch of stuff, I'm sure it would just be overwhelming to you right now.

We're going to need to hear about what your treatment plan entails? What chemo drugs are you on? What side effects are you experiencing? Where are you at with your mental state with this news?

From there, we will be able to better give you some insight about what we have learned and what our experiences have been. We don't all react the same way or tolerate all of the surgeries and treatments the same, so you will get a vast array of opinions (we're not doctors) that might be of benefit to you.

I'd say for today - welcome to the board! Let's see what the January scan tells us - we can talk more about that. And try and enjoy the holidays to some degree.....one thing for certain, not much is going to change over the course of the next 9-days when we close the curtain on 2011.

2012 offers new hope and optimism and you can get down to business when the calendar rolls over. I love being proactive, but the holidays are here and the 'help' at the facilities are taking a break. So, don't let cancer wreck this holiday by stealing some joy from you.

Cancer is here and we can't change much in the next few days - but in the new year, we can see what your plan is - and give you the strength and encouragement to go forward and kick *** to ring in the new year.

Blessings!

-Craig

GoBucks
Posts: 28
Joined: Dec 2011

Thanks so much, I'm really working on one day at a time and optimism, I'll create ga bio but for now it is emergency surgery for blockage, tumor in ovary identified and removed at the same time, and lymph node involvemet. Three chemo treatments of XELOX and added Avastin the last time, one more treatment prior to New Year. Side effects are minimal except I hate the oxy side effect. One thing I've noticed is not too many people it go to the ovary.

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

Look at your other option...
Hope to post more later, gotta run...
-p

GoBucks
Posts: 28
Joined: Dec 2011

I agree - I've been lurking and really like your postive posts.

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

OK...back. I'm stage IV since Feb 2004, living with cancer. Not NED, not DEAD ;-)
I did Avastin early on, it was just approved 1 month into my treatment so I did five months with it, six months of FOLFOX. Then I had my surgeries. The Avastin did what it was supposed to do, it shrunk tumors I had In my liver.
It's a roller coaster ride for sure with a series of "new normals" but if you have a good medical team, maintain a healthy lifestyle and a good attitude, throw in some luck and it can be beaten or you can live a good life with it. It is often becoming a chronic thing more than not.
Hope this helps.
-phil

GoBucks
Posts: 28
Joined: Dec 2011

My GP actually actually talked about chronic. I'm thinking about getting a second opinion after my scan in Jan. As you might have guessed, I'm in Ohio and there is the James and Cleveland Clinic. Like surgeon but still working on a relationship with my onc.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I don't have great sage advice. But I do it by looking forward, always forward for the future. I started college at 51 years old. Why? Because I'm looking forward to a future, I chose being a lawyer, so here's to two years at a state college (one year down)and two more years at a University, then three years at a law school, then my bar exam, then hello courtroom. I plan on a future. What it will bring, I don't know, how long is my future, I don't know, but I know I just have to look forward to each and everyday and the day after and the day after.
If the morning sun should kiss me gently on the face with it's beautiful rays, then I look forward to that warmth, if I should wake to the clouds, then I look forward to the warmth of a fire in the fireplace and the sweetness of life.
I just finished my second semester in college last week, I have a 4.0 for that semester (a 3.585 the first semester)just laid down my goals, and plan on living and seeing them through.
The first few months are the real shockers and the hard to get through times, but you will.
As you remark about the tumor in your ovary, I oddly had one in one of my ureters. Darn things just pick and choose where they'll go.
Believe you'll do fine, and always look forward to the future.
Winter Marie

GoBucks
Posts: 28
Joined: Dec 2011

Thanks Winter Marie. Great outlook, I've got lots to do in the next year but I hadn't thought about college. My daughters both graduate in May, one from high school and one from college. Then we are planning a wedding for next Sept. All of thes should keep my busy. I've got one hurdle coming up - my first scan since my surgery, I believe the chemo is working because I feel good. April

here4lfe
Posts: 306
Joined: Jan 2010

My wife's cancer spread to her ovaries also. She is on XELIRI with avastin now. Just try to learn all you can and take it as it comes.

Best

GoBucks
Posts: 28
Joined: Dec 2011

I am constantly trying to learn all I can. My first treatments were XELOX (3) and now I've added Avastin. April

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

That's a good question. For me it was a matter of trying to be as normal as possible. Do the things that you used to love to do, if possible, and savor the moment. I'm not sure if anyone ever goes back to the way they "used" to be, but it is possible to not think about it constantly. Look to the future for planning things long term. Sorry you are a member of this group, but you have come to a very caring board and we are here to help you out any way we can. Ask any questions you want also, as there is a lot of knowledge in our group. Good luck with your scan in January and let us know how you are. Enjoy your Holiday Season.

Kim

GoBucks
Posts: 28
Joined: Dec 2011

Thanks Kim. I'm still working but considering if I should start to apply for disability. As I've said earlier - we didn't move the wedding for next Sept. I've done all the "normal" Christmas things. I'll the board know how it goes in Jan.

Annabelle41415's picture
Annabelle41415
Posts: 6691
Joined: Feb 2009

I've heard that if you are stage 4 you could get disability so maybe it's worth looking into, however, there are people here that worked all the way through chemo so if you are handling chemo and you want to contintue working do it. Glad you are keeping Christmas normal -it's those things that you want to keep the same.

Kim

smokeyjoe
Posts: 1428
Joined: Feb 2011

Hey there, my diagnosis was the same as you, a year ago...except added to that two blood clots one in each lung....that was my one and only symptom of this cancer and what led to the diagnosis. Didn't do emerg. surgery, but I had complete blockage in my colon but because of the lung clots I sat waiting in hospital for 23 days before a surgeon was willing to take the risk of going in for the surgery. At first they suspected it was ovarian cancer and it was pressing on my colon closing it off, or spread to colon, but it was the opposite. I have been on Folfiri from Feb. till Oct., now on a chemo. break since Oct...no progression, had scans and onc. appt. this week and I get a further break till they scan again in March....hoping for good scans again in March!!!

GoBucks
Posts: 28
Joined: Dec 2011

Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
April

smokeyjoe
Posts: 1428
Joined: Feb 2011

I have no idea why no maint. chemo., my onc. just didn't bring it up at all. I don't know if they do maint. chemo. in Ontario...maybe someone else could answer that one. I have brought up the oral chemo. to him in the past, he simply discounts it right away, as does the other onc. at my cancer center....I don't know why.... when they thought it was ovarian cancer they sent me by ambulance to see one of the top gyno. oncs. at another cancer centre. Even after he examined me he said ovarian....then after surgery when I saw one of my surgeons (I had two surgeons, one for colon one gyno.) for follow-up he said they were all shocked it was colon cancer, He made the comment it's been reported (reported where or why I don't know).

GoBucks
Posts: 28
Joined: Dec 2011

Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
April

GoBucks
Posts: 28
Joined: Dec 2011

Not too many of us with ovarian - they were worried that is was ovarian with me too - actually said it was good it wasn't. Hope you scan in March is good - any reason you didn't stay on a maintenance schedule?
April

annalexandria's picture
annalexandria
Posts: 2573
Joined: Oct 2011

you have to just take it one day at a time. It's a cliche, perhaps, but like most cliches, there is a grain of truth in it, and I think for us cancer folks, it's critical not to look too far ahead. We don't know what the future may hold for us. There may even be potential for a cure, you never know! At the very minimum, there is a good chance to live and enjoy life despite having a chronic condition (personally I haven't been cancer-free for the last three years). And I would encourage you to apply for SSD if you feel that would be helpful for you. I applied in August and got approved in two months. It was a pretty simple process overall. Take care, and keep us posted on how things are going-Ann

GoBucks
Posts: 28
Joined: Dec 2011

Ann
I'm really working on one day at a time sometimes I get caught up in reading to much on the internet. April

geotina's picture
geotina
Posts: 2122
Joined: Oct 2009

Well, people have already given you good advise. My hubby is Stage IV, mets to liver and lungs. He was diagnosed 3/09 and still going strong. Worked thru all the surgery and chemo and in fact, has really never been off of some sort of chemo treatment. After a while you learn to accept that well, it is what it is.

You can check into social security disability. As a Stage IV, it is pretty automatic if you have paid into the system. If you have children under 18 you can collect on them also. You would be eligible for Medicare (just you though)but that does not kick in for 2 years and therein lies the problem for many. If you quit your job you may be without health insurance and private insurance in most instances is cost prohibitive so do you homework.

As long as you can do so, continue working, why not?

Take care and let us know how the scans go.

Tina

GoBucks
Posts: 28
Joined: Dec 2011

I might also be able to get some disability through work - but right now my plan is to wait and see what Jan brings. Definitely ready to start a new year.

abrub's picture
abrub
Posts: 2152
Joined: Mar 2010

but the origin was appendiceal. The main tumor encompassed my ovary, but it had seeded throughout my belly. I'm stage 4, but doing great, 4 1/2 years out. Do get a second opinion. Find out if intraperitoneal chemo is an option for you, HIPEC or not heated. (I had the not heated variety.)

Good luck, and keep breathing!
Alice

GoBucks
Posts: 28
Joined: Dec 2011

Alice Can you do HIPEC after the original surgery?

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

HIPEC is done immediately after a surgery. HIPEC is not done as a stand alone procedure.
Moore's Cancer Center is one of the leaders in HIPEC research. I consulted with them and it is compelling. If I needed another Cancer Surgery, I would probably do it with HIPEC. http://cancer.ucsd.edu/Pages/default.aspx

Best Always, mike

abrub's picture
abrub
Posts: 2152
Joined: Mar 2010

However, I went to Memorial Sloan Kettering, where the original plan assumed that all of my tumor had been removed at my "surprise discovery" surgery that the surgeon would do a laparascopic exploration, and place a belly port for IP chemo, which is done after surgery. Unfortunately, there was more tumor, so Dr. Paty ended up doing a full laparatomy (full open surgery) to remove my omentum, and resect my colon in 3 places, before placing the belly port. He had to remove all visible tumor before the IP chemo. I then started IP chemo 48 hours later, and had cycles every other week for a while.

At MSK, they felt that this was the best option for getting at the cancer cells that had escaped when my tumor had ruptured way back when (we don't know when that occurred - years ago.)

It might be worth getting an opinion at MSK.

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

A friend of mine Jim, in his late 70's during his third round of colon cancer told me, "It is better to look down at the flowers then up at them." Jim lost his forth round of cancer at 91! He helped me so much my with my business, and my outlook of life.

Do not believe that you have an expiration date, you are not a bottle of milk. Every day can be full of new experiences and every day can be a new adventure.

Look Forward to many more experiences and adventures!
Best Always! mike

buckeye2
Posts: 428
Joined: Jul 2011

As you might have guessed from my user name, we share residency in the same great state. My husband had HIPEC done at the James by Dr. Abdel-Masih (sp?) just recently. We both really liked him and the future holds the cards for whether or not the outcome was worth it. I try to offer those new to the Board the two quotes that I learned from the Board that have helped me.

"This is a marathon,not a sprint".
This has helped me realize to buckle down for the long haul.  I can't cry everyday and put our family's life on hold.  We have to keep living our life as close to normal as possible.

"Feed the faith.  Starve the fear".

I think the worst symptom associated with these disease may be what it does to your thoughts.  They can be controlled with some effort.  I try to shove the bad ones down as far as I can.  

Stay on the Boards.  The people here are very knowledgeable.  Either only smart people get colon cancer or only smart colon cancer patients post.  
Regardless, the information will help you and the encouragement will "feed the faith".

Lisa

laurapaulsen2002
Posts: 1
Joined: Dec 2011

Three weeks before my 45th birthday on 8/4/2010, I was taken in for emergency surgery to put in a portacath and for 90% colon blockage diagnosed with stage IV with four liver mestases. Then I had chemoradiation to shrink those tumors. Then I had the reconnect the colon and this huge krukenburg tumor on my right ovary that popped out that noone knew about it was 10 x 15cms!! Then 1/2011 it was chemo again with avastin for three months to shrink the liver tumors. Finally, I had a liver wedge resection with RFA on 5/31/11 at UCSF and I stayed only four days in hospital!!!!! It seemed like a lot of waiting in between and a bit like a dream as I look back on it.
I did go back to work while I was on the 2nd round of chemo and avastin and I worked right up until my liver op then I taught summer school six weeks later. I had a 2 on my CEA July 2011 which gave me the all clear to go back to work. clear colonoscopy in august.

Avastin worked great at shrinking tumors. I did not have too many side effects from the other chemos except loss of energy and some tingling in my fingers and toes with coldness. I did not loose my hair either time when I had chemo!! I kept away from any foods like mushrooms that would blow me up. The radiation was fine until the final five days (25 total). My bladder felt like I had to pee all the time and it was difficult for me to get up and down without taking my time. It made me go into menopause in full force with hot flashes so I got a patch and that remedied that!!!

Great doctors, family and friends got me feeling and looking great again. best of luck to you. Keep positive attitude and positive people around and dont be afraid to get some counseling......I just did last month and its been another adventure for me!!!

dmdwins
Posts: 453
Joined: Aug 2008

You are all right ...there are not too many of us with our metastasis to the ovaries. I only "heard" of one other person of my oncologists back when I was diagnosed in 2007.

The good news is that I am 4+ years from diagnosis...currently NED and living well.....be encouraged...if I could do it so can you!!! Bad days with an occasional good day in the beginning but one day at a time...and then the good days started to out number the bad!

Wishing you great success and many good days!

Smiles,
Dawn

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

You have many tools available to fight the beast, but they can be unsuccessful, if you succumb to self pity and fright. Just get out there and kick some ***. Keep active, eat well. And just live. Don't take anything for granted.

Stretch in the morning and tackle the day ahead.

My thing is, I'm in no hurry. I refuse to stress and I will get to it when I get to it! Far most, my goal is to appreciate what I ave and make my home, my haven. No matter, where I am in my life or home, I now feel content.

Hang in there!

Stage 4, in remission 2.5 years

tootsie1's picture
tootsie1
Posts: 5061
Joined: Feb 2008

Praying for excellent health for you in the future.

*hugs*
Gail

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