staring into the abyss of mCRC

Buckwirth

The following is about me. If you can relate to this great, however, as Phil likes to point out, we are all different and my story may not hold any relevance to you or your disease.

From the time I was diagnosed I believed my cancer was a little more benign than that of others whom I met and read about. Most who had a metastasis (stage IV) had it to the lungs or to the liver. They were often treated with surgery and always with chemo.

Mine? At dx my metastasis was limited to a couple of lymph node clusters in my groin and stomach. Bothersome, but not fatal. I also breezed through my first 24 weeks of treatment, no one who saw me when the 5fu bag was removed would have had a clue that I had cancer, and even I felt almost as invincible as I had when I was well.

Then came the last few days of radiation, the pain of the primary tumor, the APR and the colostomy. Now I was different, and felt it everywhere I went.

Most of this seemed to be the treatment. The pain of the tumor could easily have been caused by the radiation. The surgery (which I was hoping to avoid) took months to recover from, and even then I had to deal with "the bag", a constant reminder that I was no longer a whole/well person.

After the surgery I took a break, maybe a bit long, but one I needed to get my head straight. Even traveled to Europe. When I returned I started a new biochemotherapy, not realizing that this may be my last defense. And my cancer? It was spreading, but contained in my lymph system, so I was going to be fine.

In November I had what would turn out to be my last session of biochemotherapy, and during the next two weeks the cancer was like a wildfire with a strong wind at its back. Spreading and growing very rapidly, but still just in the lymph system. Even though I was now actually sick, I felt that there was no way that I was in any immediate danger.

What was happening? My lymph nodes had had enough and were shutting down, or they were so clogged with tumors that they could no longer process the fluids they normally move through the body. My left leg swelled like a Macy's parade balloon, and looked like a sausage on the grill. Then there was the swelling of my scrotum, and the tightening of my skin on my torso.

Note that none of this was cancer, rather it was a side effect of the disease, caused by the location of the metastasis.

As the swelling got worse it began to affect my organs. My left kidney stopped draining into my bladder, fluid was filling up the empty spaced between my lungs, a blood clot was forming behind my left knee... Left unchecked it was going to overwhelm all those organs that I was so pleased were cancer free. They may be cancer free, but the cancer was going to cause them to fail by proxy, letting the lymph fluid shut them down, one by one. This was rapidly becoming worse than any of the chemo side effects I had suffered.

This also affected my mood, my sense of humor was gone, and I did not want to talk to anyone. It was just too much effort. Along with that was the lack of appetite. I was eating so little that they were feeding me via IV, and there was talk of putting in a feeding tube to make sure I was getting proper nutrition.

I was going to die, my organs drowned by my own immune system under the direction of the tumors that controlled it.

I was saved by the proverbial second opinion. We sought a third oncologist at another cancer center (we had been going to Norris, for the opinion we went to Moores) and he recommended a return to the first treatment, Folfox. My oncologist agreed, and after the second infusion I began to improve, after the third the improvement became dramatic.

Now, after two+ months in the hospital, I am home and in the wonderful care of my wife. I can walk a little, I have lost a total of 50 pounds of water weight (lymph fluid weight?), my appetite is back, and I can make all of the home health aides laugh. I can even joke around with the emergency services when I call to say "I've fallen and I can't get up" (happened once, but that is a tale for another time).

I now know what my timeline would have been had I chosen against treatment: I would not have seen Xmas 2010.

My toes are tingling, and my fingertips are beginning to get numb, which beats being ashes in a box. I may get a secondary cancer, or an organ could become overloaded by the chemicals and fail, but the only reason I will live long enough for any of those things to happen will be because I used the chemicals.

Again, this is my story and my experience. Yours may be different.

Love and health to all of you,

Blake

pepebcn

Hi Blake I will copy this to my onc.!
BtW as you may be know I was offered a new treatment ( vaccine) but I have chosen FOLFOX even it is my second time on this drug!.
Now I think I've done well.!
Hugs My friend. Areveure!

Brenda Bricco

Can't keep a good man down!
This disease is so personal and different to everyone that has it. I am glad that the treatments have brought you all this way and would hope that NO ONE get's judged for what ever treatment they choose. Good for you! Keep up the keeping up! I am impressed with your ability to come back after all that has happened and still laugh. My husband makes me laugh more than anyone ever has... even after dx.
GOD's blessings to you and family.
Brenda

relaxoutdoors08

Thank you for Being Here for all of us
Blake,
We thank you for being back here sharing your story of inspiration. Just knowing the Folfox has made such a difference for you gives me hope. I will stop thinking of those "oxy" effects in the negative but instead as a "badge of courage". Thank you for your sharing of all your knowledge with those on this board. Prayers for continued improvement.
NB

Phoebesnow

relaxoutdoors08 said:

Thank you for Being Here for all of us
Blake,
We thank you for being back here sharing your story of inspiration. Just knowing the Folfox has made such a difference for you gives me hope. I will stop thinking of those "oxy" effects in the negative but instead as a "badge of courage". Thank you for your sharing of all your knowledge with those on this board. Prayers for continued improvement.
NB

2nd opinion,
I can so relate to your story, so many times, they have said my mother in law is done and then some genius doctor pops in and saves the day. I hope you continue to have many good days.

have2believe

in the same boat
Hi,
My mom also has distant lymph node metastases (no organs)... though it's stomach cancer. Folfox was effective but now we're trying Taxotere to switch it up. Mom has been on chemo w/ breaks in between taking the "watch and wait" approach when things are stable. Do you see a break in treatment anytime soon or will u be on continuous maintenance?

Blake, thanks for sharing your story. It seems like distant node metastasis is not as common so it's good to hear about people's experiences. I hope those chemicals continue to work its magic.

Buckwirth

have2believe said:

in the same boat
Hi,
My mom also has distant lymph node metastases (no organs)... though it's stomach cancer. Folfox was effective but now we're trying Taxotere to switch it up. Mom has been on chemo w/ breaks in between taking the "watch and wait" approach when things are stable. Do you see a break in treatment anytime soon or will u be on continuous maintenance?

Blake, thanks for sharing your story. It seems like distant node metastasis is not as common so it's good to hear about people's experiences. I hope those chemicals continue to work its magic.

I am
Always in favor of breaks. I expect for me breaks will come in the form of clinical trials, and a biological with minimum side effects. If I was able to take the knowledge I've gained in the last two years and start over again at the beginning, I would start with a clinical trial. As a first line patient you have access to phase three trials, and we are currently in a kind of golden age when it comes to new drugs being developed. At the time I was unaware that waiting would preclude me from the best of the trial phases.

Switching it up is good. Remember that Folfox was still effective, just in case someone thinks your mom has exhausted her options.

Of course, none of what I said should be construed as medical advice °:-)

Blake

Sonia32

Hugs
Glad your sharing this with us.

pete43lost_at_sea

what an amazing story
dear blake,

I am glad you are typing and sharing.
this is the best news i could have dreamed of, despite our occasisional differences of opinion, i am just so pleased you are with us here on this board.

hugs,
Pete

ps have you ever read about mawsons survival story in antarctica its, in the same leagues as yours.

Buckwirth

Sonia32 said:

Hugs
Glad your sharing this with us.

happy
You were pestering me :-)

PhillieG

Defending Your Life
Blake, I'm sorry you're having a rough time of things, it seems like things are on the upswing(?). It sucks that on all sides of the cancer debate that everyone feels the need to defend the routes they've taken...

I'm sure visiting this site will bring your sense of humor back...
I'm having a riot!
-p
:-}

have2believe

Buckwirth said:

I am
Always in favor of breaks. I expect for me breaks will come in the form of clinical trials, and a biological with minimum side effects. If I was able to take the knowledge I've gained in the last two years and start over again at the beginning, I would start with a clinical trial. As a first line patient you have access to phase three trials, and we are currently in a kind of golden age when it comes to new drugs being developed. At the time I was unaware that waiting would preclude me from the best of the trial phases.

Switching it up is good. Remember that Folfox was still effective, just in case someone thinks your mom has exhausted her options.

Of course, none of what I said should be construed as medical advice °:-)

Blake

shoulda woulda coulda
Yes, I would have looked more seriously into clinical trials when my mom was diagnosed in Nov 09. But there was such a sense of urgency. I wish I had known a lot more before my mom was diagnosed. ...but i guess, should, woulda, coulda...

thingy45

PhillieG said:

Defending Your Life
Blake, I'm sorry you're having a rough time of things, it seems like things are on the upswing(?). It sucks that on all sides of the cancer debate that everyone feels the need to defend the routes they've taken...

I'm sure visiting this site will bring your sense of humor back...
I'm having a riot!
-p
:-}

we are family
We are family. We laugh, we cry we argue and sometimes a little fighting, but in the end we are there for one another.
Some do alternatives some go the chemical route, whatever works for you, we all want to stay with our loved ones as long as we are able to.
If one method does not work we switch to the other. It is called surviving.

Thanks for the story Blake, it gives us inside of what you are going through and also hope. There is always hope.
Glad you are here with us.
Love and hugs,
Marjan

Phoebesnow

thingy45 said:

we are family
We are family. We laugh, we cry we argue and sometimes a little fighting, but in the end we are there for one another.
Some do alternatives some go the chemical route, whatever works for you, we all want to stay with our loved ones as long as we are able to.
If one method does not work we switch to the other. It is called surviving.

Thanks for the story Blake, it gives us inside of what you are going through and also hope. There is always hope.
Glad you are here with us.
Love and hugs,
Marjan

Blake
What a great story. I knew u would fight thru it. I pray for more improvement in your future. Full recovery would be sweet. Send your wifey to a spa day. She's been thru a battle to.

tootsie1

So glad for the improvement
Thanks for sharing all of that. Yours is quite a story. I do hope this period of better health will last a long time.

*hugs*
Gail

reenw

pepebcn said:

Hi Blake I will copy this to my onc.!
BtW as you may be know I was offered a new treatment ( vaccine) but I have chosen FOLFOX even it is my second time on this drug!.
Now I think I've done well.!
Hugs My friend. Areveure!

Thanks for the story Blake.
Thanks for the story Blake. My wife is starting treatment on the 16th and we are both understandably scared. However we have chosen to be aggressive as possible based on her young age. Your story is inspirational.

Pepebcn, just curious, which vaccine were you offered and what made you turn it down ?

buckeye2

I am so happy to hear things
I am so happy to hear things are looking up for you and that you are regaining your sense of humor. I missed you posting because you always see the cup as "half full". Lisa