I stand up to use the word cure(d)....

Please feel free to read, share your thoughts, your stories and connect with others!
User avatar
horizon
Posts: 1542
Joined: Tue Apr 12, 2011 10:10 pm

Re: I stand up to use the word cure(d)....

Postby horizon » Sun Jul 19, 2020 9:30 am

cptmac wrote:Woo Hoo!!! Even by the 90's standards I can say I am officially cured!!!

So I'm bumping this up - because someone pointed it out to me, reminding me the grief I used to take by some people on this forum. And that by their standards, I can say I'm cured!!! And I coulda said it by their standards - 6 years ago!!!

I'm jumping up and down for JOY!!!! Woo Hoo!!!


Heck yes you should bump it. Good for on multiple fronts. So happy you can say that now!
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?

User avatar
cptmac
Posts: 1195
Joined: Mon Nov 19, 2007 3:15 pm
Facebook Username: Dorothy McGrath

Re: I stand up to use the word cure(d)....

Postby cptmac » Fri Jul 24, 2020 8:30 pm

Thank you so much for the compliment about writing :-). I always thought I might write a book one day. But first I had to survive.

But, I like just posting it to a dedicated audience, for free.

As to your other questions.

To get cured - I followed doctors orders, and what worked for me may not work for you.

1st, I signed up for a Stage II clinical trial and was the second person to sign up for this trial. I had my colon resected and then 30 days later I had my liver surgery and had a medtronic hepatic arterial pump inserted.

I chose to use Irinotecan as systemic chemo every two weeks. Then every other two weeks I had FUDR inserted into my pump that put chemo directly to my liver. The other two weeks they put in heparin.

Self Care - I never at a lot of red meat or fat, so I had to increase both of those. While I was in the hospital after my liver surgery, I was put in the heart ward because of my heart murmur. Those poor people in the heart ward.

Here I am every morning getting eggs, bacon and sausage, a burger for lunch and a steak for supper. It was hard for me but I did it and eat more red meat now. Then, when they took my blood - I wasn't eating enough fat - they were going to inject me with fat but the nurses said NO - just give her some butter and dessert (both of which I never used to eat much of). The staff bought me a cake but my appetite wasn't there yet so my cake sat for a day or two. What encouraged me to eat it was, I could hear heart patients pass by my room saying, wow I must really miss meat and cake because I can smell it.

While I was there I begged for a salad - one of my favorite things to eat. They finally gave me a salad the size of a fist if I promised to eat more fat. I actually thought about switching my meal for one of their salads with chicken - but I thought my meal is what put them here in the first place.

But I can tell when I eat red meat, I feel I have a lot more energy. I try to eat it twice a week but sometimes forget. I try and remember to put butter on my bread, but I forget. But I do like garlic toast, so I try and eat more of that.

Probably not the answer you wanted to hear, but I have always eaten salads because I think they are delicious. Plus, my mother was Japanese so I never had a lot of meat or dessert.

The top doctor - I think it was mainly if you don't go to a top doctor as a Stage IV, a regular doctor may not know of some of the newest treatments out there. When I did my trial, some people asked their doctors about it, and their doctors said it was dangerous and didn't work. But I also believe that they were looking at studies where they used the pump only. Because in current studies, for those individuals who use the pump and systemic chemo at 10 years out have a 67% survival rate. Plus, a lot of places did not want to operate on my liver AND the first doctors scans weren't as clear as the ones I had in MN and they dx'd me with rectal cancer - which requires a whole different treatment. So I learned going to a top place makes all the difference.

Plus, I thought it was great that that super doctor who she called must have known the place they were in wasn't very good. I have learned to love the doctors who really want to help the sickest of the sick patients and they don't want the regular doctors to touch them, because then it's hard for them to treat them while also fixing what someone else did.

So both of you for bumping this up. I'm truly not on here much anymore - but I do come back periodically. And today, I'm sooo glad I did.
cptmac
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

Siti
Posts: 161
Joined: Thu Aug 01, 2019 10:58 am

Re: I stand up to use the word cure(d)....

Postby Siti » Mon Jul 27, 2020 7:31 am

cptmac wrote: But I can tell when I eat red meat, I feel I have a lot more energy. I try to eat it twice a week but sometimes forget. I try and remember to put butter on my bread, but I forget. But I do like garlic toast, so I try and eat more of that.

Probably not the answer you wanted to hear, but I have always eaten salads because I think they are delicious. Plus, my mother was Japanese so I never had a lot of meat or dessert.


My husband too — he’s pretty much vegetarian since he was a kid and only eat meat occasionally. Maybe a filet steak once every 2-3 weeks. He also exercises on most days and got cancer anyway.

I read the book “How to starve cancer” and I became so obsessed. I even did an experiment on myself, I implanted a continuous glucose tracker on my arm (usually used for people with diabetes), to ensure that I don’t cook for my husband foods that would give a glucose spike. But guess what? I realise that everyone metabolises food differently and there is absolutely no way anyone can theoretically control that. My glucose levels change even though I eat the same breakfast every morning (oats, berries and plant milk). My friend who did the experiment with me even got a glucose spike eating an apple!

As much as I’m a strong believer that diet plays an important role, I think there’s a limit to what we can do. I still do believe we need to eat healthy in general, but I think we need to live a little and not obsess over every single thing we eat on top of the already stressful and miserable cancer diagnosis.
Wife of DH (54) DX on 5/7/19
CEA value: 1.2
T loc: Sigmoid
T type: Adenocarcinoma
T grade: G3
Pos LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 9
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!!

Claudine
Posts: 396
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: I stand up to use the word cure(d)....

Postby Claudine » Mon Jul 27, 2020 8:45 am

As much as I’m a strong believer that diet plays an important role, I think there’s a limit to what we can do. I still do believe we need to eat healthy in general, but I think we need to live a little and not obsess over every single thing we eat on top of the already stressful and miserable cancer diagnosis.


Agreed, Siti. My husband loves to cook (ethnic of all types, Indian, Thai, Tanzanian...) and he’s already going through so much, why take away this small pleasure?
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT 04/18, SBRT 02/19
Resect small intestine 05/18 (no cancer - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin 03/19 to 01/20
6.7 cm left adrenal mass 03/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 4.4
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: one 1mm stable nodule
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and residual tumor removal 05/20

I_will_fight
Posts: 34
Joined: Mon Jun 29, 2020 3:38 pm

Re: I stand up to use the word cure(d)....

Postby I_will_fight » Thu Jul 30, 2020 5:20 am

cptmac wrote:Thank you so much for the compliment about writing :-). I always thought I might write a book one day. But first I had to survive.

But, I like just posting it to a dedicated audience, for free.

As to your other questions.

But I can tell when I eat red meat, I feel I have a lot more energy. I try to eat it twice a week but sometimes forget. I try and remember to put butter on my bread, but I forget. But I do like garlic toast, so I try and eat more of that.

Probably not the answer you wanted to hear, but I have always eaten salads because I think they are delicious. Plus, my mother was Japanese so I never had a lot of meat or dessert.




Thanks cptmac,

Hahahah, I was expecting the opposite, you telling us that you gave up on red meat and started taking vitamin supplements and exercising... but it is good to know that meat and fat helped you.

Best regards
JC
46 yo male at DX
June 2020 - 6 cm T3N0 cancer on left colon
No evidence of liver mets, two milimetric dots in lung (non specific)
July 8th 2020 - 50 cm colon and spleen removed
lymph nodes 37/0
MSH6 non expressed, other MMR proteins present


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Google [Bot], msusta and 3 guests