Desperately needing some support from stage 4 friends!!

[Fighter2012]

Hello,
I was diagnosed with stage 3 colon cancer in 2012. Had a partial colon resection followed by 8 rounds of folfox. Everything seemed to be going well until I started having stomach issues in December 2013. A CT scan showed a 12 cm mass sitting on the left ovaries. To make the long story short, by the time a biopsy and other CT's were done, they found a couple of very small spots in the lungs and liver and was told today that its also in the abdomen wall. So although the original ovaries mass (colon metastasized) is now on both ovaries around 20 cm, surgery is not the best option option right now and they're starting me on chemo today...I'm only 36 with no family history of any other cancers. It terrifies me that this cancer is growing so fast, and I'm really looking for some hope from my stage 4 friends...giving up is not an option here since I have 2 young children, but I'm so scared and sad over this whole thing.

[BrownBagger]

It a tough reality to face, but it's your new reality, and you have no choice but to face it. That said, I'm constantly surprised (and pleased) that I've made it this far (going on 5 years) with Stage 4 disease, and I'm actually looking forward to a few more years, at least, on the planet. Treatments are improving all the time, and they've gotten better since I've been on this journey. I'm currently on chemo, but working full-time (plus some freelance work on the side), staying active and feeling pretty good overall. Looking forward to a busy and productive summer spent gardening, bicycling and cutting firewood.

I know it sounds cliche, but don't lose hope. Find the best oncologist you can, put your faith in him or her, and focus on taking care of your overall, general health and well being--both physical and mental. Let the doctors sweat out the details. If you need help coping, ask your doctor to refer you to a psychologist or psychiatrist. Most cancer centers have those doctors on staff or otherwise available. Don't be afraid to ask for medications that might help.

Ultimately, you will hopefully be able to come to terms with your situation and create a life within that reality, that works for you. That's about all we can do and in my experience, it works. It's a lot of work, but it's worth it.

That's my advice, for what it's worth.

Good luck!

[janderson]

I am going on 8 1/2 years since being diagnosed stage 4 and doing great. I know of several on this forum and others forums who are 5, 10, and even 20 year stage 4 survivors. There always new treatments and procedures coming out or in trials to give us more options for longer survival. A second opinion is always a good idea.

[Guinevere]

BB gave you excellent advice. Some days it's just one foot in front of the other. And, sometimes, you need help doing that! That said, there are several long term stage 4s here. I'm not quite long term but I'll see my cancerversary on April 11th. Hopefully, you have a good support system around you. Let them help you. You'll be blessed by their help and they'll be blessed knowing they were able to help. Pick and choose your battles in what needs to be done around the house. Some things might have to slide and your energy better used on enjoying your babies and hubby. Hope this helps!

God bless ~
Guinevere

[juliej]

Fighter2012, my heart is with you. I was diagnosed right off the bat with Stage 4 in my liver and lungs nearly three and a half years ago. I personally know the devastation you feel and wanted to offer you support and encouragement. I too have no family history of cancer and was diagnosed at a relatively young age. It helps to know that there are many Stage IVs on this board and we will give you as much advice and support as we can.

There are a couple of things you should find out. Ask your oncologist if you've been tested for KRAS and BRAF mutations. Approximately 30% to 50% of CRC patients have a mutated (abnormal) KRAS gene, which means they are unlikely to benefit from taking Erbitux or Vectibix. No use taking those drugs (and enduring the side-effects) if you have a mutated KRAS gene. Another 5% to 10% of patients have a mutated BRAF gene.There is data suggesting that mutated BRAF makes Erbitux or Vectibix less effective also. So it's important to have those tests done. You want whatever chemo you're taking to have the maximum effect that it can. And if you haven't already, you should also have Microsatellite instability (MSI) tests done, which show whether or not you have Lynch syndrome. (Lynch syndrome is an inherited condition that increases the risk of colon cancer and other cancers. Because it's hereditary, there's a 50% chance that a person will pass it down to one's children, which is why it's good to be tested if you have little ones.)

I know this is hard news to take, especially since you have two young children, but remember that researchers are making advances in CRC treatment every year. There may not be a cure for Stage 4 CRC yet, but remission and/or stability is possible. I hope sincerely that it is in your case. And there are some of us, like me, who were initially told that we were inoperable and went on to have successful resections. So put on your boxing gloves, get the chemo going, and start nuking those tumors! You might have an excellent response, which could buy you years of time with your kids (and time for new treatments to become available too!).

You also might want to consider getting a second opinion at a major cancer center (like MD Anderson, Memorial Sloan-Kettering, Mayo, Johns Hopkins, Dana Farber, etc.). In my case I went to MSK and they gave me options that weren't available at my local cancer center. I credit them with saving/prolonging my life.

Strength and courage to you. And come here anytime you want to talk, scream, cry, or rant. We GET it. We really do. Sending you and your family my love and prayers.

Hugs,
Julie

[Fighter2012]

Thank you all for the words of encouragement. Juliej, I don't have lynch syndrome, but I do have a mutated Kras gene. I'm at Princess Margaret in Toronto and they are wonderful. I'm just scared that this thing is moving and spreading so quickly! My last colon cancer was a low grade one, but this time its aggressive. In any case I'm starting chemo today and hoping for the best.

[pukalania]

Dear Fighter2012,
My hubby was in a similar situation as you, his recurrence happened in 2012 and he is still here fighting we have young one too... BB said it best in his post..i'll just add: do it one step at a time...one foot in front of the other...it's too overwhelming to think of all of it at once...but you will find the right path for you
hugs

[CRguy]

I'm at Princess Margaret in Toronto and they are wonderful.

Sending best wishes to Fighter2012 for Fighting well into 2014 and beyond !

Just wanted you to know about a Canadian based topic we started a while back, including a number of folks in Ont and at PMH.
Calling ALL Colorectal CANUCKS !
( My father's Onco trained @ PMH with the top Canadian Lung Cancer Oncos ... they do good work ! )

Post a few more messages here and you will be able to start sending and receiving PMs with other members, some of whom may have been through the PMH ride and posted earlier into that topic.

Best wishes on the Journey
CRguy

[trapbear]

My husband just "celebrated" his sixth anniversary with stage 4 colon cancer. Surgery is not an option, too many mets in lung, met in pancreas, met on thigh. He has been on chemo for four years, taking breaks, sometimes just maintenance. We keep living, going on vacations, spending time with family and friends. Like the others have said, make sure you have an oncologist you trust. Remember that this is a marathon, not a race, keep on living, don't put off things you want to do. Hang in there.
Bill

[Cherie]

God that fucken sucks! Doing chemo and then it seems to come back with vengance. I would do what JuileJ suggested and test for mutations so that you know you are geting the best chemo for your cancer. Your a mum and you have to fight. If it wasn't for my five year old I would have given up but she doesn't let me and I know your kids wont either. Get help with them and keep as active as you can. I went on holiday last week and met an eighty year old stage four cancer survivor and he was out riding his bike. Now go shirnk those tumors so you hopegully can then have surgery. Good luck.