It was 15 years ago today

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It was 15 years ago today

Postby cptmac » Mon Jul 22, 2019 7:14 pm

My 43rd birthday..... and today I turn 58 - far exceeding most anyone's expectations.

Here is my story.

Every year, I come on, because when I was first dx'd I was looking for a long term Stage IV survivor. I would have loved to have seen this post and I made that promise, that every year on my birthday AND my cancerversary, I would post.

Copied and pasted from last year..

It was on July 22, 2004, my 43rd birthday, that I heard those words, you have Stage IV colon cancer, you have 6 months to live, but you could die at any minute. I was so angry, that I wanted to live 6 months and a day, just to prove that doctor wrong.... I never could have realized at that time, that I set my sights way too low....

For those newbies who haven’t heard it, here it is... copy and pasted from years past, because I'm too lazy to retype it all.

To tell you a little about myself, I had moved to a new state in May of 2003 for a job. I previously had a full time job, was in the reserves and freelanced. So I didn’t have many opportunities for philanthropic work. When I took this, job, I only had one. After living here a year, I felt confident in my position, but a little bored. I prayed to the lord that whatever he needed me to do; I had time to do it. I would let him pick my path. I would let him pick my work for charity.

At the same time, I needed to renew my prescription for my allergies. So I stopped into a walk in clinic for a prescription for them. The Dr. stated it was probably allergies, but suggested I should get a colonoscopy to rule out IBS or Chron’s disease, but not to worry; it wasn’t like I had cancer or anything. So I did some research on IBS and Chron’s and made an appointment at a different facility with another doctor and he tried to talk me out of it. He said I was too young, I had no symptoms, my insurance wouldn’t pay for it and he informed me that walk-in Dr.’s aren’t the best physicians. However, I had done my prep work and a friend and I had taken the day off of work. So, I went ahead with the procedure. He asked me to come back on Monday for the results.

When I saw him, he stated I was lucky that I chose to have a colonoscopy. He had found something. He went through the stages of cancer. He said they would know more, once my biopsy was back. At the time, only 5% of people survive Stage IV cancer and, on average, individuals usually only lived for 18 months after diagnoses. Feeling as good as I did, I thought, even if it was cancer, it obviously was in the early stages, since I didn’t have any symptoms. I purchased a lot of books and scoured the internet and felt assured that I was fine, since I didn’t have the symptoms.

People say that they will never forget the day that they found out that they had cancer. For me, it will always be easy, it was my 43rd birthday. I then went to yet another facility to meet a colorectal surgeon. He confirmed that I had Stage IV cancer. He told me that I had six months to live, but that I could die at any minute. He seemed nice at first, until I told him that I would be getting a second opinion. He glared at me, and I knew that I would never step foot in his office again. He became angry with me and informed me that he would not have time to talk to me about the surgery, but he did let me know how dire my situation was. I needed to plan the surgery ASAP. That even with treatment I would live for 18 months tops, but that I could die at any moment. He proceeded to let me know the excruciating pain that I would be in when my colon burst and my gastric juices would flow throughout my body. That I should not fly on a plane, that I should not lift anything, that I should not eat anything, because these could make my colon rupture.

I held my ground and stated I wanted my medical records so that I could take them with me. Well, he didn’t have them, so I had to retrace my steps, going back to the different medical facilities to pick them up in a city I barely knew. None of the places that had my records would release them without me personally picking them up.

I remembered the words of that doctor, the excruciating pain I would be in. I thought, how would I get to a hospital. Perhaps suicide would be better than the pain. I thought about running right into a concrete median. But thought, what if I killed someone else, and that doctor made a mistake. How could I live with myself? I thought about driving off a bridge, but what if I broke my legs, and it turned out not to be cancer. I thought about OD’ing on drugs, but didn’t know what prescription drugs would do it. Then, out of nowhere, a car tried to pass me on the shoulder and hit me. Now, not only did my odds seem hopeless, I was also transportationless and over 50 miles from home, with a cell phone that was dying, with all my friends calling me up and wishing me a happy birthday. Even I knew that telling people I was about to die, could wait a day, a few weeks, even until after my death, but it could wait until after my birthday.

You would think I would have known better. Cumulatively, I’ve had some of the worst birthdays. It started with my folks forgetting my birthday when I was 7, going to court to have a family member who had Alzheimer’s, put against her will in an assisted living facility, and on, and on, and on… Whenever tragedies happen in my life, I try and figure out what life lesson am I supposed to learn. I thought by seeing a doctor on my birthday, certainly, I no longer expected anything good to happen on my birthday. Okay, I did buy a lottery ticket; after all, wouldn’t that make a great headline. Woman dying of cancer wins $22 million dollars, has six months to spend it. So “WHAT LESSON WAS I SUPPOSED TO LEARN????”

And then I knew. I knew, because once I admitted it, it was the first time I started to cry. I was always a giver and was too independent, too selfish, to ask for help. Even at that, my independence made it difficult for me to ask for it. I thought about my next step and who I would call. After all, I barely knew my coworkers for 1 year. I picked up my phone and called a co-worker to pick me up. I called someone who I thought could keep a secret. I let them know the direness of my situation because I still needed to pick up my records and I had time to do it, but I knew he was a bit of a lollygagger. I asked him to not tell anyone.

I get a call back that he couldn’t pick me up right away, however, a co-worker’s brother lived right by where I was. He was a stay at home dad. He would pick me up and get my records. (What??? Now another co-worker knows??? AARRRGGGHHHH). My lesson would be hard learned. Well, his brother had a hard time finding me, and none of my records would be picked up because it was after 5 by the time we met each other. I had set up appts at the U of MN, the Mayo, MD Anderson etc, etc, etc…. My birthday was on a Thursday, the U of MN made room for me on Monday. Mayo on Wednesday, MD Anderson on Friday, etc. etc. As I said, I went to the bookstore on my birthday. And every year, the week of my birthday, US News publishes its list of best hospitals. You can find it here.

My co-worker met me, and he drove 45 miles an hour on a 65 mile an hour highway to get me home. (I wanted to strangle him, but it’s true what they say, it’s far harder on the caregivers, than it is on the patient. Because all I wanted to do was go home. I was having a horrible birthday, and the sooner I went to sleep, the sooner my birthday would be over. Tomorrow would be a better day. Tomorrow had to be a better day.) On the way home, he gave me print outs that our administrative assistant printed out of airline flights to Minnesota. Great, now she knows too.

The first thing I did on Friday was read my horoscope. It said as long as I saw a doctor early in the month, everything would be okay. I went to the walk in clinic on July 1st. Yea!!! I was elated. This was the first bit of good news I heard. It gave me the motivation to continue. I made my airline appt, called friends to take me to the airport, meet me at the airport, etc, etc, etc. I now knew the importance of not seeing doctors alone. I emptied out my fridge, gave food to my neighbors, bought a lot of cat food to feed the stray cats I fed. Then I started to pack two suitcases with all of my worldly belongings. I packed my bible, my prayer bible, my rosary, and several books about colon cancer. I kept looking and laughing, as I had no clothes in the bags. But then I thought, I’m going to Minnesota, the home of the Mall. Clothes would be easy to find. But I wound up taking every thing that was important to me, that would be irreplaceable. I now know what I would take if I ever needed to leave my home in an emergency.

I looked around my place, thinking I may never come back here again. I took photographs in my brain of what I had and what I have accomplished. The next day someone was there to pick me up to take me to the airport, there was a torrential rainstorm. But I had a nice friend, who picked me up and she carried my suitcases to her vehicle, and to the plane. After all, if I picked them up, I could die. She never complained once.

Going to the U of MN, they too couldn’t get my records. I redid them all. Turned out to be a great thing, because they had newer CT scans, and their pictures looked a lot better and were electronic. All of my doctors and tests were within walking distance. No more getting lost and trying to find my way around. After my results came in, I met with my oncologist, Dr. Edward Greeno. All of the other doctors spoke highly of him, and let me know that he would be the mastermind behind my whole journey. Not only did he give me hope, he gave me options. He let me feel that I could have some control throughout this whole process.

One of the things that we talked about was a Stage II clinical trial. I remembered trials from a Statistics course I took in college. I understood the years of research it would take before a trial could be offered to patients. I also understood the different types of studies that needed to take place before drugs could be cleared through the FDA.

Katie Couric’s husband’s doctor had just published a book right before I was diagnosed. Talk about lucky me. In it, he talked about the use of an HAI pump. This interested me. Well, the clinical trial that was being offered to me, involved the HAI pump. Talk about lucky fate.

I’ve always been a supporter for the advancement of science and I knew I would never have a problem signing up for a Stage III clinical trial. However, Stage I and II trials frightened me. I was sure that only the sickest of the sick would sign up for those. Then I realized, I was the sickest of the sick. Dr. Greeno explained everything to me in great detail, gave me the forms from the trial to read. He gave me a lot of confidence in helping me understand what was involved in the trial. I appreciated all of the research that had taken place before I even started the trial and all of the safety issues that would be put in place to ensure that no harm would be done to me.

I’ve always been concerned that I would become addicted to drugs. I interrogated all of the medical personnel whenever I was given a new drug. One time, after my liver surgery, they wanted to give me a sleeping pill, because I was awake almost all night, and I needed a good nights rest for all the tests I would need the next day. The conversation was about 10 to 20 minutes long, until someone said the common name of benydrl. Heck, I take benydrl for my allergies. they should have started with that info.

A few weeks after I was released from the hospital from my liver surgery, I was still feeling a bit of pain in my abdomen. I was weaning myself (not doctor ordered) from my pain meds. I had an appt on Monday and would get a refill then. Dr. Greeno had my abdomen ultrasounded just in case. When a friend picked up my prescription at Walgreen’s, I saw, for the very first time in my life, a white squirrel. I had never seen that before. I took that as a sign that everything would be okay. It was a good thing too. My friend and I went shopping and got some groceries. We watched some TV and then I checked my voice mail at 11 PM. In ever increasing urgency were 7 voice mails. The first 4 were from my nurse, the last 3 were from my doc. I needed to return to the hospital immediately.

Upon entering, I was told to put on a gown and lay in bed. I wanted to know why first, we had to wait for the doctor. He ran in, wondering why it took me so long to get there. I am fidgety and talk with my hands and I told him my adventure. He kept telling me to stop moving. I could tell he was stressed. I thought perhaps because I woke him from bed. As I kept moving he kept telling me to stop and to lie in bed. He finally blurted out “You have a blood clot by your hepatic artery!” Okay, I’ve heard blood clots are bad. But my appt was at 2 PM. I went shopping, climbed three flights of stairs up, and then down again. I didn’t understand. And then he yelled. “Don’t you get it, if you don’t stop moving, you are going to die!” I stopped, and he walked out of the room, I think to regain his composure. I asked my friend and the nurse to leave so I could change. But I would be moving…. The doctor talked to my friend outside, who was in shock. This was the first time he heard that I could die imminently. … I had never seen him so upset. But once I was in bed, I asked if I could move my arms and legs. Was it just my torso that I couldn’t move? He frustratedly said “Arm, yes. Legs, barely” At that, since I am quite the walker, they supposedly lost my clothes until the day I was able to check out. I think they did it to make sure I didn't escape. That wasn’t the first time it happened to me, but it cracked me up that they thought that I wouldn’t leave the hospital in my stylish gown. Since I hadn’t packed at all, my friend bought some books for me to read. It’s nice to have great friends. It’s nice to ask for help.

At this time, The Terry Shiavo case was all over the news and I started wondering about my own fate. Would the rest of my life be filled with endless Dr.’s appointments, until I was finally sent home one last time to die? I was becoming annoyed because I had not started chemo, and I felt my journey’s end slipping further away. Even more so, because it’s hard for me to sit still, no less lie still. All that changed when Dr. Greeno visited me in the hospital and assured me that the worst was almost over. I also remembered that I saw that white squirrel. It gave me hope.

What was even scarier, once I started chemo, I started losing my personality. My handwriting got very small and neat. I started talking slower, I started typing slower, I started walking slower, I barely slept as I constantly wanted to walk. This happened over the course of 2 weeks. I didn't want to say anything.... Afterall, who complains that their handwriting is now neat and small. I mean, they are going to send me to the looney bin. I have similar handwriting as my father, and when he was ill, his handwriting looked smaller, but not as small as mine, and jittery, as mine also was. I was concerned that I would be put away forever... When I couldn't sit still for my appt with Dr. Greeno, he sent me to see a neurologist. They did a mri scan of my brain. The residents were VERY impressed on my sinuses and complimented me on them. I almost started to laugh. But I asked, does this have anything to do with what's wrong with me. They said they really didn't know how to read the report, but they didn't see anything.

I saw a neurologist, who wasn't sure what was wrong with me, but said he would send my info the the head neurologist. He informed me that this guy is the same guy who ultimately decided Terry Shiavo's case. I became really nervous. I felt as though my fate was about to be handed to me. That there was no hope left... Afterall, if he got to decide Terry Shiavo's case, would anyone take me on, if he gave me no hope.... Thank goodness he called back within 5 minutes..... Apparently, I'm one of the very few people in the world, that when you take raglan, it gives you medically induced parkinson's. The neurologist showed me the symptoms from a poster he had on his wall. Sure enough, your handwriting becomes very small and neat, you talk slower, you walk slower... All the symptoms were there. Now, whenever I go to a doctors office, I read all the literature. You never know if you might be able to help your doctor diagnose you.

Once, while I was getting chemo, I was wondering if signing up for a clinical trial was such a good idea. And then, in an instant, came a crawl on CNN. Patients who sign up for clinical trials do better than patients who don’t. What???? Surely I’m delusional. Did I see that right??? Luckily, my chemo took 1.5 hours. So I had time to sit and watch it crawl by again. Sure enough, there it was. I never doubted my treatment again. I never doubted that God sends you signs when you need them most. Luckily, I’ve never needed a sign since.

My oncologist really helped me through it. He never made me feel that he didn’t have time for me. I always felt that I was his priority. This may not seem that amazing a feat, unless you understand that once my chemo treatments came to an end, I realized that I would not see him as often. My appointment with Dr. Greeno was at 4 PM, and I asked over 100 questions. I figured I would just keep asking until he shooed me away like so many other doctors. Okay, partway through he did mention, "it looks like you have a lot of questions there" I said "Yes I do, so I hope you're comfortable" and kept asking questions. But Dr. Greeno, stayed after 5 and never once looked at his watch or seemed annoyed. I knew he would help calm my fears of my cancer returning, because I now knew the reason so many people are scared of cancer. You don’t even know you have it.

What makes Dr. Greeno a great doctor is, he explained everything to me in a manner in which I could understand and was not the least bit concerned that I was tape recording every word he said. Not only did he make me more knowledgeable, I have been able to pass on this knowledge to other patients who are too timid to talk to their doctors. Several of them thought they were incurable, and I convinced them to get another opinion. Several of them have now been told they can be cured.

Due to Dr. Greeno’s patience with me, as I gained knowledge about my disease, I have also used this information to enlightened friends of mine who were both State and US Senators. If not for Dr. Greeno’s tireless efforts of answering my questions and keeping me informed, I wouldn’t have the information for them to help others.

People will ask if you’ve changed from having cancer, I say not really. I’ve always been a very positive person. But I have learned some valuable lessons.

1. I’m excited because I’ve already had the worst day of my life. I can’t imagine any day being worse than that. And, it was the worst birthday of my life to boot... Some people will say, what about the day you die. Heck, I’ll be dead.

2. When you first move to a city, find great hospitals and doctors first, not find where the best stores are.

3. My life has gotten easier, now that I have learned to ask people for help. It makes them feel valued, and I’m able to get a lot more things accomplished in my life. I used to think I needed to learn everything, now I say let the experts who know excel, do excel for me. And if I google things I need in an excel program, chances are, there is an excel program out there for me, for free even. I found a checkbook program, medical bill tracker and one for taxes. That is really all I need.

4. The most important thing I’ve learned is, God has better things to do, than to find me a hobby.

Thank you for letting me share my story with you. I share it every year, because when I was diagnosed, I was looking for any Stage IV's who had survived. Message boards were not what they are today, and I couldn’t find anyone. Now, thanks to this message board, I have found many.

Thank you all for sharing your stories, for helping the newly diagnosed find their way through this maze. And I hope you'll share a smile with me, to celebrate my birthday/cancerversary. I no longer dread getting old, I am thrilled that I am alive!!! I am soo blessed to have so many friends who are willing to help me... and celebrate my birthday with me!!! Thanks for letting me share!!!
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

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Location: Pacific NW

Re: It was 15 years ago today

Postby weisssoccermom » Mon Jul 22, 2019 8:55 pm

I'm so glad to see you back again, posting this story. It truly is amazing!

Congratulations on 15 years and here's hoping you have another 15 or more years to continue to celebrate!
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
NED now and forever!
Perform random acts of kindness

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Re: It was 15 years ago today

Postby CRguy » Mon Jul 22, 2019 11:05 pm

.... AND that my friends
is how it is done

Now and forever my friend

Mega Cheers and Harmony
Caregiver x 4
Stage IV A rectal cancer/lung met
13 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

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Joined: Fri Feb 10, 2006 7:04 pm

Re: It was 15 years ago today

Postby Ron50 » Tue Jul 23, 2019 12:45 am

Congrats on another anniversary, Hugs ron.
dx 1/98
st 3 c 6 nodes
48 sessions 5Fu/levamisole
no recurrence cea <.5
numerous l/t side effects of chemo

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Maggie Nell
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Location: Melbourne, Australia

Re: It was 15 years ago today

Postby Maggie Nell » Tue Jul 23, 2019 2:38 am

OMG!! You saw a white squirrel??!! Must have been from that dodgy batch
that weren't colour fast.... :roll:

Happy always and have a grrrrreat 58!
DX April 2015, @ 54
35mm poorly diff. tumour, incidental finding following emergency r. hemicolectomy
for ileo-colic intussusception.
Lymph nodes: 0/22
T3 N0 MX
July 2019 : pending liver U/S, colonoscopy
rut roh

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Joined: Wed Jun 05, 2019 5:08 pm

Re: It was 15 years ago today

Postby k0chr » Tue Jul 23, 2019 1:37 pm

I hope you had a great, maybe, given your history, even uneventful birthday.

Thank you for sharing your story and spreading hope.
DX: 54
05/24/19 DX: CC rectosigmoid adenocarcinoma
06/07/19: laparascopic
5.8cm tumor, clear margins
1/10 positive
07/08/19: starting FOLFOX, 12 cycles
08/14/19: gallbladder removed
08/19/19: DVT left internal jugular vein, subclavian, & axillary veins, daily Lovenox injections

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Re: It was 15 years ago today

Postby juliej » Tue Jul 23, 2019 4:12 pm

Congratulations!!! :D :D :D

I look forward to seeing your post every year! It never fails to make me happy. You are wonderful to share your story again and again. Never stop.

Stage IVb, liver/lung mets 8/4/2010
Xelox+Avastin 8/18/10 to 10/21/2011
LAR, liver resec, HAI pump 11/2011
Adjuvant Irinotecan + FUDR
Double lung surgery + ileo reversal 2/2012
Adjuvant FUDR + Xeloda
VATS rt. lung 12/2012 - benign granuloma!
VATS left lung 11/2013
NED 11/22/13 to 12/18/2019, CEA<1

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Location: Minnesota

Re: It was 15 years ago today

Postby edinaman » Wed Jul 24, 2019 6:37 pm

Congratulations on 15 years. It's always good to get your update each year.
Went in for surgery for a cyst on my bladder, and they found colon cancer growing on the outside of the colon. Got to have two surgeries at the same time! Stage 3, one node involved.

michelle c
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Joined: Wed Dec 02, 2009 3:58 am

Re: It was 15 years ago today

Postby michelle c » Mon Jul 29, 2019 6:24 am

Thank you for sharing your story. I love reading it every year. Please don’t stop.

I remember you being on here when I first joined about 10 years ago. I remember your little pic :D

I’m sure you gave me hope and comfort when I was first diagnosed and frightened.

Best wishes always ❤️
25 May 09 Dx with CC (sigmoid colon) 2 days after my 44th b'day
CEA prior to surgery 4.7
3 Jun 09 LAR - Stage III 3/10 lymph nodes
6 Jul - 10 Dec 09 12 cycles FOLFIRI
Genetic testing - inconclusive for Lynch
Jul 12 port removed & hernia repair

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Joined: Sun Sep 13, 2015 6:16 pm

Re: It was 15 years ago today

Postby mariane » Mon Jul 29, 2019 1:50 pm

Thank you Cptmac!! Congratulations!! Your post on different cancer forum captured my attention and made me to seek HAI pump treatment. I cannot thank you enough!
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

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Re: It was 15 years ago today

Postby HopeForJesse » Wed Jul 31, 2019 9:25 pm

Congratulations ! Here’s to many more annuals posts of your story :)
DH DX 01/16 49 YO inop RC stage IV liver mets
12/15 CEA 241, FOLFOX to 11/16
LAR/ileo 5/16 Clear margins 1/29 nodes
HAI, reversal, liver resections7/16
FUDR 8/16 -NED 3 mos
Rising CEA 3/17 Xeloda, 5/17 -12/17 Erbitux & Iri stable but lung/lymph mets CEA 2.7
5/18 5 days SBRT radiation to sternum 10/22/18 surgery to remove zyphoid process met
6/11/19 5FU added to cetuximab and irinotecan CEA 16
Ephesians 3:20 Our God is able to do immeasurably more than we can ask or imagine!

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Re: It was 15 years ago today

Postby horizon » Sat Aug 03, 2019 8:51 am

I'm glad you're still posting it. Congrats!!
I'm just a dude who still can't believe he had a resection and went through chemo (currently 8 years NED). Is this real life?

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Re: It was 15 years ago today

Postby cptmac » Fri Sep 13, 2019 10:51 pm

Thank you so much everyone!!! And Mariane, you made my day!!! I come on here, granted a lot less often now, but I come on once a year, because I was looking for someone like me, a Stage IV long term survivor. And hoping my story my help someone... And here you are..... a long term survivor.... and helping others!!! Congrats!!!
As long as you're alive, there is hope.
dx 7/04 stage IV
colon resection 8/04
liver resection 9/04 with HAI pump installed
Stage II trial w irinotecan as systemic and FUDR for direct chemo to liver via HAI pump
Cured since 9/04

Posts: 555
Joined: Fri Apr 06, 2018 11:40 am

Re: It was 15 years ago today

Postby boxhill » Sat Sep 14, 2019 11:03 am

cptmac, thank you so much for posting your amazing story! This is the first time I've seen it. I must have missed it last year, which was my first year here as a Stage IV person.

I remember vividly the doctor in the hospital who had to answer my questions when I found out that the pathology report was in. Was it cancer? Yes. (That much I was prepared for.) Was it in my lymph nodes? Yes. Was it anywhere else? Yes. Where? The liver. I had been looking things up, and I knew that meant I was Stage IV, and according to what I had read that meant I was pretty much a goner. Tears welled up in my eyes, and he said to me kind of desperately, "There ARE cures!" Then followed the toughest couple of hours of my life. Stories of long-term survivors mean so much when you're Stage IV.

I hope to be able to emulate you 15 years from now. :)

Thanks again!
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

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