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Re: I need a little hope

Posted: Sun Jul 16, 2017 1:07 pm
by Basil
Don't know if this is the right thing for you but I leaned on Xanax the first few weeks. Helped tremendously with sleep and anxiety. I still take one anytime I'm heading up to MD Anderson.

Re: I need a little hope

Posted: Mon Jul 17, 2017 2:32 am
by ranger
I'm very sorry you received bad news Maybe this will give you Hope: My colon cancer had spread to my liver by the time I was diagnosed. The general surgeon who cleaned up the mess when my colon perforated gave me the news. I was pretty sure I would die sliced up and skinny. Then I had my first appointment with an oncologist.
My doctors always thought I had a chance for resection (Georgetown University Hospital in DC and Johns Hopkins in Baltimore), which lifted my 5-year survival odds from something like 4% (Dr Google) to something like 40%. (Dr. Google).
I've never had a recurrence and my health has been good since that year of surgeries and chemo.
That was 2009. Celebrating 8 years NED (no evidence of disease).
I hope this encourages you.
Amy (strange ranger).
There is no false hope. There is only hope.

Re: I need a little hope

Posted: Mon Jul 17, 2017 7:52 pm
by HopeForJesse
Hello! Just wanted to add to the messages of HOPE. You are in the right place: the club NO one wants to join but all so grateful to find. Signature below tells our story. Best wishes to you.

Re: I need a little hope

Posted: Mon Jul 17, 2017 10:55 pm
by mom_2_3
PPD,

Just had my 8 year scan at MSK this morning. Will get the results later this week on the portal and will see my doctor next week. I had 5 liver mets across both lobes and a local doctor here in NJ gave me discouragement about survival back in 2008 when I was diagnosed. So, I found another doctor who offered more hope for my condition. I had surgery and have been NED since 2/2009. Like GFPIV, I have an HAI pump but have not used it since 2009. Been meaning to have it taken out but always seem too busy to get to my surgeon for the removal. My feel for that original doctor was that he was seeing countless patients across all cancer types. He had no specialty so he had very little basis for hope for me as he hadn't treated very many Stage IV colon cancer patients. My oncologist ONLY treats patients with colon cancer so I know that she not only is a major researcher in this area but also knows all other studies and treatments for colon cancer.

Hugs,
Amy

Re: I need a little hope

Posted: Tue Jul 18, 2017 5:25 am
by LeonW
Hi PPD,
You haven't added detail to your signature (yet?), so I don't know how similar we are.

At Dx I was assigned palliative, despite only a few (2) liver mets. Reason was their size - too big for resection. Attacking the colon tumor was the only thing feasible, then. I still have bad memories of the introductory talks with an overly empathetic palliative nurse who felt sssoooo sssoooorrryyy. Doesn't work work me. I need facts; will deal with the coping details myself. I need info to define expectations / my roles in it all; what I can/need to do myself; realizing that I need to rely on my docs as I simply don't have their knowledge. Luckily I (also then) had an open and honest onc who fully gave all info I needed. She promised fully bet on going for *aggressive* adjuvant chemo, despite these mets.

When liver was attacked 9 mos later, there were no living cancer cells left. Capox had given 100% result - on hindsight all the jazz about the liver resection surgery *might* not have been necessary after all (haha).

My take on it all is that we've just been somewhat unlucky to draw a bad straw; there are too many straws to get cancer. To kick the beast we need the opposite - good fortune; the problem is that these are not so plentyful so rare. To me, prospects percentages are not verdicts, just an indication of how much/little good luck is needed.

My advice: hope for luck and don't forget to live in the mean time. Make sure you celebrate every small win on the road ahead

Best wishes, Leon

Re: I need a little hope

Posted: Tue Jul 18, 2017 5:10 pm
by juliej
Let me add to the hopeful stories. I was diagnosed with liver mets in all lobes of my liver plus a big fat met in each lung. :shock: My local cancer center said I was inoperable and would be on chemo until it quit working. I felt really discouraged but then I got a second opinion at MSKCC and everything changed. I too had an HAI pump implanted, followed by successful liver and lung resections. I'm now cancer free. :D

Get a second opinion at a top-tier cancer center, learn everything you can about your particular cancer (get genetic testing for BRAF, KRAS, etc.), and be assertive about your treatment options. No door can close completely if you put your foot in it and keep pushing.

Re: I need a little hope

Posted: Tue Jul 18, 2017 8:41 pm
by mariane
In June 2015 I learnt that I had colon cancer with liver mets ( big and fat). There were 10+ of them. Radiologist stopped counting. The largest was 7.5cm. I received gruesome prognosis. Oncologists gave me 2 years with chemo and maybe only 3 months if cancer would not have responded to chemo,. I signed papers that I am terminal and my treatment is only palliative.
Broken I turned the computer and searched the internet. I wrote: "stage 4 colon cancer survivors" and among many found forums and posts about HAI pump and Dr. Kemeny from MSKCC who invented it.
I got colon resection since my oncologists suggested that usually even palliative resection reduces cancer mass and prolongs survival. I had 6 years old twins. I desperately wanted to live. 2 weeks after my resection I was in NY and had and saw famous Dr. K for the first time. She told me that they would do anything for me so I could see my kids grow.
10 months and 3 liver surgeries later I was NED. It was in May last year. After resection I have been living good , normal life. I had to quit my good, fulfilling job, leave my country but I am very much alive. I raise my kids, volunteer at school and church, do gardening and even build a retaining wall in our yard. I feel healthy.
I started studying to come back to work here. Maybe I will choose a bit less stressful and demanding job in time if my scans will still be clear.
There is hope.

Re: I need a little hope

Posted: Tue Jul 18, 2017 9:57 pm
by WarriorSpouse
You will find many on this board living a "new normal" after getting properly diagnoses, having a plan of attack, and implementing said plan. Hope is found in the many here that are living their lives despite the diagnosis... Some more than 7-10 years.

I would get to MD Anderson and really listen to what they want you to do and how they want you to do it. There has been much progress in CRC and the new numbers are yet to be determined now that some have had great success with certain surgeries, chemo and Avastin treatments.

You are on a road well travelled by others. Trust your Doctors at MD Anderson and put your plan into action with a sense of purpose. Many feet equal a mile, and many miles will equal months and years... The road may appear long, so break it up into smaller goals. Check them off as you come back to a sense of normalcy again, and you will as long as you keep your focus on what is directly in front of you.

Win each day, and then the next, and before you know it, you find that you are in more control than you ever thought!

Good luck with your visit at MD Anderson... We are here for you:)
WS

Re: I need a little hope

Posted: Tue Jul 18, 2017 10:49 pm
by ANDRETEXAS
I am also in Austin. Where were you diagnosed in Austin?

Re: I need a little hope

Posted: Wed Jul 19, 2017 3:36 pm
by Rainykatie
Hi there! I am sorry you are going through this, but this post is full of hope. I am a supporter/caregiver to my mom who also has Stage IV with liver mets, also told she is inoperable. I've only been here a few months but I know what it is like to receive such news and grapple with the tough emotions and choices that follow- it is so overwhelming and it still is for me.

I am so encouraged reading all of these good and hopeful stage IV stories!

As for my mom, she just went through her 6th round of FOLFOX in 3 months and she is doing so much better. The doctors have been absolutely amazed by the shrinkage of her mets and primary tumor, and she may be a candidate for surgery in the future if these results continue. We are going for a second opinion at Memorial Sloane Kettering in August.

I've learned so much in these past few months, including that stage IV patients can have a great quality of life and that this diagnosis doesn't have to be a death sentence. You've found a great place to come for support and hope.

Re: I need a little hope

Posted: Wed Jul 19, 2017 4:19 pm
by peanut_8
pdp497

I'm in Austin also. Feel free to send a PM if you want to chat. There are lots of folks here with a stage 4 diagnosis who are doing really well.

Best Wishes,
peanut
aka Terri

Re: I need a little hope

Posted: Wed Jul 19, 2017 5:15 pm
by pdp497
I was diagnosed at St. Davids Round Rock. I had a follow up appointment with the oncologist and she wants to await the results of genetic testing on the tumor before coming up with a treatment plan. We are also waiting in an appointment at MD Anderson they are currently saying they can't get us in until August 14 but be are pushing for sooner as we don't want to wait to begin treatment. Does anyone have an opinion on whether it makes more sense to start treatment as soon as possible even if it delays getting a second opinion at MD Anderson or if it is better to wait an extra few weeks to get their thoughts before doing anything?

Re: I need a little hope

Posted: Wed Jul 19, 2017 11:11 pm
by Basil
I would wait to get into Anderson. I'm there and my docs were not slow, but not overly aggressive into getting to the treatment part. Said it was slow growing thing. I'd think the benefit of md Anderson expertise would be worth a slight delay.

Re: I need a little hope

Posted: Fri Jul 21, 2017 4:56 am
by NHMike
My sister told me about two friends that had poor prognosis. One was given 18 months to live but is still alive over two years later. The other had Stage 4 Ovarian and she had her surgery over 18 months ago and no recurrence so far. Both used a cancer nutritionist (doctor that had cancer himself) that I asked her about. I am giving some consideration to talking to him about what he does.

Re: I need a little hope

Posted: Fri Jul 21, 2017 11:53 am
by tater
thank you for this thread, I too need some hope for my wife.