The Colon Club

Spazzyjanet wrote:For those of you who are 7+ years out from a Stage 4 diagnosis. Are any of you NOT receiving treatment from a top 5 cancer hospital?

I went to Mayo in Rochester, so I consider that a "top 5" hospital. I have low confidence in local hospitals based on experiences with family members. For instance, right now my mother-in-law is in a local hospital for unexplained weakness and exhaustion causing her to fall repeatedly at home and not be able to even get on a toilet. The doctors spent several days treating a non-existent infection and her condition gets worse and worse after a week there. No one seems to take responsibility and the communication is abysmal. Completely opposite experience at Mayo.

I’ve been a patient at MSKCC in nyc since the beginning (10 plus years) But I received chemo at my local oncologist in NJ. Now that MSKCC opened a center in NJ near me, i now recieve treatments there, but still head to NYC to see my doc there.

I was diagnosed with cancer during the caesarean birth of my daughter and discovered I was Stage IV 6 days later on my 39th birthday. That baby just turned 10 and I have been NED for 9 1/2 years. There is hope. When I was first diagnosed all I wanted to know was that long-term survival was possible and I think you can see from this thread that it is.

Best wishes,
amy

Thank you everyone. These stories are so helpful. Google is a nightmare but I’m trying to learn about my disease. I just found out that I have a BRAF mutation which doesn’t sound good. All of my pathology reports are not in yet. I’m going to Sloan Kettering and I’m so lucky that it’s only 20 minutes form where I live in NJ. My port goes in on the 11 and a very strong chemo treatment will begin shortly after that.
I’m trying to focus on Christmas because usually it makes me so happy but it’s been so hard. I absolutely must see my children grow up. I can’t leave them as babies.
It’s hard too because after surgery I have never felt better. It’s scary to think I’m going to purposely be poisoning my self very soon. It’s needed. I know. But I feel well and not sick.

My diagnosis was almost one year ago, at age 51 - colon cx w/ single liver lesion. Completely shocking, of course. On the advice of my doctor, I decided not to do much research. He told me I would find old and out of date statistics, usually involving older, sicker patient cohort. I took that advice. Resolved early on that I was going to find docs I felt comfortable with, and then do what they tell me and keep living my life. I went through 6 FOLFOX treatments, then surgery at Johns Hopkins, then 6 more FOLFOX treatments, finishing in August. Since then - CT and MRI all CLEAN and CLEAR!!!!

To my pleasant surprise, the treatment wasn't nearly as debilitating as I expected. I kept working. I stayed active, including very my usual vigorous exercise routine. I took a family trip to Maui mid chemo. Nothing is guaranteed - I know that - but the past year almost seems like a bad dream. 2018 is ending a hell of a lot better than it started. I'm sure you'll be able to say that about 2019.

Keep the faith. Stay strong. Stay busy, engaged and distracted (shouldn't be hard with young kids)!

It’s hard too because after surgery I have never felt better. It’s scary to think I’m going to purposely be poisoning my self very soon. It’s needed. I know. But I feel well and not sick.

I felt the same way and every treatment stage after took me further away from feeling well. The hardest part was psyching myself up for the next round of chemo as I too struggled with the idea poisoning myself. Being on the other side now I can say that it may get bad but, like childbirth (so I am told), the pain and discomfort subsides as time goes on post treatment.

I have a retired oncologist friend who has advised me through my journey. I told him the same thing, that I felt fine. He told me that is the best as it gives you reserves to fight this awful thing. Those that go into it already feeling bad oftentimes have a much rougher time of it.

Dave

Hi! I was also diagnosed at 42. That was 5 1/2 years ago. I was treated at both MSKCC and at NYU. I was on ADAPT long-term, but stopped all treatment when I reached the 5 year mark this past May.

You can see there are quite a few stage 4 long-term survivors here.

I have to add here. I am the person who was panicked in Sept 2017 at stage 3c and wrote the “Positivity needed” post. I later had a liver met and had a resection. I am currently NED. I have read it all. And one thing that’s helped me is knowing that these stats are old. They encompass the old, those who opt out of chemo and those who died of other things other than cancer. So google dr is a fraud! Read all you can, get into fight mode and vow not to die this way. You can do this. Get in the game.

Hey Opal,

My wife has crossed the four year mark of NED status and is heading for year 5 now. After the first year of an aggressive treatment plan, her maintenance plan involves Zeloda pills (2 weeks on and one week off) and a visit to oncology every three weeks for an Avastin infusion.

Her life is very well managed over the past three years, since the treatment plan is less harsh and the maintenance side effects are less prevalent. Many on this forum only pop-up here on their yearly anniversary, but there are many people over 5 years of survival on this forum. You can use the search engine under "quick links" to find their posts.

Basically these survivors are out there, so keep your head down and get through the initial treatment period and know that it will become more manageable and less intrusive after the first year. We are all here to support you along the way and wish you a speedy recovery from your recent resection. It sounds like you are well on your way and getting great care from an excellent cancer center.

Best wishes.
WS

My wife was dx'd ~8.7 years ago, what turned out to be stage 4b (AJCC 6th)/4c (7th ed) colon cancer - mets in the omentum, various deposits, para aortic biopsied; unbiopsied immune/chemoreactive objects in the liver and lungs. We used the best regional surgeons we could find (region = 20m - 100m), a mild, oral 5FU drug available overseas, metronomic immunochemo with various recommendations from research, LEF references, specialists and alternative MDs. The MDA onc's estimate was under 2 yrs "tops".

We have limited consults with standard oncologists, we usually demand more advanced (or alternative) techniques than they are able to support. We usually get better, more advanced support/research by other means.

Hi opal and everyone- my husband was diagnosed right before he turned 42 (lots of 42s in this thread!) he starts round 23 chemo
Friday. He has survived almost 1.5 years so far. His tumors are shrinking, cea low and trying to stay positive. Just take it one day at a time.

Ehut wrote:I was 35 at the time of stage IV DX with a 20 month old daughter. At the time I managed to stay positive, yet deep down expected the worst. Next week will mark 7 years since diagnosis, over 6 of which have been NED. My doctors now tell me I am most likely cured, but I still remain vigilant. We added another daughter to our family last year and are thinking of adding another. There is definitely hope after such a serious and terrible diagnosis.

That is so wonderful to hear.
Congrats

Hitting my 5 year mark from diagnosis later this year. Lots of survivors here.

I was DX stage 3b in November 2013 at 43 after having been a very good marathon runner (248 as female many years before dx) went through colostomy placement and then reversal in January 2014 and started chemo in Jan 2014. Had six months of oxiplatin and 5fu, which I think is appropriately named. In October 2015, I had a metastasis to one ovary and had that one ovary removed as my only treatment. Prognosis went from very good as a stage 3’er to not so good and sort of in limbo, as I guess we all are, but with no stats to obsess over

I have been NED since october 2015. My oncologist has told me he does not expect my cancer to return given my good scans and having passed point of danger/ highest risk for recurrence. He worked at Dana farber for many years and is more than reputable.

There is hope and your fear will definitely lessen with time. It is so tough, though, and I found lots of peace hiking in the woods. It was my therapy the summer after my metastasis.

Denise

5FU is “appropriately named” made me spit out my water from laughing . Thanks to everyone posting on this thread - it gives us tremendous encouragement.