12th Round + Rang the Bell

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Cured
Posts: 516
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

12th Round + Rang the Bell

Postby Cured » Tue Mar 19, 2019 3:32 pm

Chemo center celebrates when one is done by ringing a bell + receiving a certificate.
I did to encourage others. I don’t worry - but am glad to be finished with yechy chemo - Folfiri.
42 more hours on the pump. I should be finished!

10 poops today- so far. At least they are all formed.

Scans next week. My wife is the one with scanxiety

God is great in all!
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain. Removed.
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 dose of chemo!
After 8 rounds CEA=3.0,in range
After 3 week break CEA = 1.8
Finished 12 rounds of Folfiri.

Punky44
Posts: 270
Joined: Mon Oct 01, 2018 4:29 pm

Re: 12th Round + Rang the Bell

Postby Punky44 » Tue Mar 19, 2019 4:36 pm

Congratulations!
Caregiver to my amazing mom (68)
10/1/18 DX with rectal cancer; CEA 17 at diagnosis
MRI/CT/PET puts staging at T3N2M0
Total neoadjuvant therapy:
8 rounds Folfox 11/5/18 - 2/11/19; CEA dropped to 6.2
Short course radiation 3/14/19 - 3/20/19
Robotically assisted laparoscopic LAR 3/21/19
Pathology report says yT2N0M0 with 0/38 nodes

Me: 34, first colonoscopy 11/16/18—normal! Come back in 5 years.

Claudine
Posts: 9
Joined: Tue Mar 12, 2019 2:41 pm
Facebook Username: Claudine Tobalske

Re: 12th Round + Rang the Bell

Postby Claudine » Wed Mar 20, 2019 2:10 pm

Wonderful! My husband had his first one last Friday, same as you (Folfiri)... 11 more to go... Can't wait for him to "ring the bell" (metaphorically since there aren't any at our hospital). Fingers crossed you're in the clear from now on!
Wife of Dx 04/18 (51 yrs old then)
No primary found, lytic tumor L4 vertebrae, CEA 10
Radiation 04/18
Resection small intestine 05/18 (activity on PET scan, but no cancer found)
Xelox * 6, 05/17 to 10/18
5.3 cm hypermetabolic left adrenal mass 01/19
SBRT L4 02/19
Folfiri + Avastin
CEA 58 03/15
CEA 17 03/29

stu
Posts: 1046
Joined: Sat Aug 17, 2013 5:46 pm

Re: 12th Round + Rang the Bell

Postby stu » Wed Mar 20, 2019 6:06 pm

Delighted for you ,
Stu
supporter to my mum who lives a great life despite a difficult diagnosis
stage4 2009 significant spread to liver
2010 colon /liver resection
chemo following recurrence
73% of liver removed
enjoying life treatment free
2016 lung resection
Oct 2017 nice clear scan . Two lung nodules disappeared
Oct 2018. Another clear scan .

AppleTree
Posts: 267
Joined: Fri Mar 18, 2016 8:16 am

Re: 12th Round + Rang the Bell

Postby AppleTree » Wed Mar 20, 2019 10:44 pm

Congratulations on the 12th! I had alot of advice from well meaning friends/family who read 8 is an option sometimes in Europe. But my DR wanted me to do all 12, so I stuck with it. It took me time to get used to being off chemo because I lost so much weight and was very week... and they take away the IV of steroids that help you function during chemo. When my DR explained that was the reason for my slump, it made sense!
Diag Feb 5, 2016 Age 45
3 cm tumor 5 cm from verge
Radiation + Xeloda pills - 3000mg 5x week
3/14 - 4/16 - 25 sessions
Shrank just over 50% L nodes 0/13
Remove rectum with temp Ileo 6/17
Reversal 7/20 due to infection
Acute hepatitis August. Chemo cancelled
June to September 2016 - 58 days in hospital

2017
6/16, MRI shadow in lung
Pet - 6.6mm Met in Upper R lobe
7/30 VAT surgery Mass General/Boston
8/24 port
8/30 - 4/28 Folfox. 12 rounds
2018
June CT shows new lung Mets.
July/Oct PETs...CLEAR!

Cured
Posts: 516
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 12th Round + Rang the Bell

Postby Cured » Thu Mar 21, 2019 4:44 pm

AppleTree, It looks like you’ve been through a lot. My Onc only prescribed 8 rounds of Folfox before- as I had 5 weeks solid of 5FU when I was undergoing daily radiation. He added them together. It worked...I was NED for 10 years.

This go around, on Folfiri, I actually took a 3 week break after 8 rounds. I believe the scans plus low CEA indicated I could have stopped then. But the Onc always planned for 12 rounds. I had to do the last 4 rounds to reassure my wife.

God sent me a message that I will live another 15 years, so I trust that is true. However, I am trusting that He gave us medicine, science and good doctors to help us. I must admit I can’t simply cure myself. This cancer journey has helped strengthen my faith.

May God also comfort and strengthen all members of our Club.
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain. Removed.
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 dose of chemo!
After 8 rounds CEA=3.0,in range
After 3 week break CEA = 1.8
Finished 12 rounds of Folfiri.

dhamptonii
Posts: 8
Joined: Sun Dec 30, 2018 6:58 pm

Re: 12th Round + Rang the Bell

Postby dhamptonii » Thu Mar 21, 2019 11:54 pm

Congrats! Here's to another 15 years.

DarknessEmbraced
Posts: 3265
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 12th Round + Rang the Bell

Postby DarknessEmbraced » Sun Mar 24, 2019 8:35 am

Congratulations on completing chemo and I hope you get good scans!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

Cured
Posts: 516
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 12th Round + Rang the Bell

Postby Cured » Sat Mar 30, 2019 12:30 pm

We Met with medical oncologist to review results of MRI of head and full body PET scan. Results are good - but not perfect.
It is less reassuring when you don’t get to view primary documents. I have to request a copy of the scans to CD; then find the radiologist’s report to get a better handle on what they mean. They don’t post the scans to the patient viewable EMR.

My CEA was in the 2s: under the 3.0 but higher than last reading of 1.8. They didn’t print the CBC report either. So I hope they automatically load it into the portal- so I don’t have to ask for it again.

They ordered a MRI Perfusion scan for this week. Supposedly it views the brain better. If that is so, you wonder why they didn’t order it in the first place when they are doing a follow up on metastatic cancer in the brain. I will ask the Neurologist to review the scan.

I will start a new thread on Radioactive Sugar Uptake. My Onc reported that my uptake was 9 in August (for the PET) and this week was only 2. Good news of some sort- but thank God for the Colon Club; so I have a place to turn to for information.

My family worries. I want to be finished with chemo. Dr likes chemo forever it seems. I wish Immunotherapy was an option; but the genetic markers don’t qualify at this time.
After more data and professional analysis, then we have to decide:
-do preemptive Chemo ongoing? Or
-wait until scans show cancer growing in my lung & then more chemo?
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain. Removed.
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 dose of chemo!
After 8 rounds CEA=3.0,in range
After 3 week break CEA = 1.8
Finished 12 rounds of Folfiri.

DarknessEmbraced
Posts: 3265
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 12th Round + Rang the Bell

Postby DarknessEmbraced » Sun Mar 31, 2019 8:48 am

Congratulations on finishing chemo!*hugs* I hope you will get more information soon!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18

Cured
Posts: 516
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 12th Round + Rang the Bell

Postby Cured » Sat Apr 13, 2019 4:04 pm

My Medical Onc was not satisfied with raw MRI- so he ordered another one. As the MRI center had an opening, I ended up with 2 MRIs only 4 days apart. Each with Multihance Contrast. 2 days later I had a seizure and was in the hospital for a day and am now taking anti-seizure meds and can’t drive. It is uncertain what caused the seizure- but so much flop-flopping of the polarity of magnets on my brain couldn’t have helped. Literature tends toward some blame to the contrast.

My Colorectal surgeon friend was out of town. He’s back now reassures me that a brain scan will never look the same after a craineotomy - with scar tissue and all.
I had a PET scan the same day as my MRI- so lots of radiation.

Now that we have reviewed the reports by the radiologists, we are comforted by the progress in healing the lung thingies- and apparently no new tumors throughout my body.

I see my Medical Onc on Monday - 2 days from now. We will plan next steps, but my body is recovering from the chemo. Hair, skin and nails are growing back; more normal. Still some diarrhea to overcome - which I added to by taking MCT Oil to get back into Ketosis.* But I figured it is better to fuel my brain with ketones and to tolerate wearing diapers again. Our concerns are for my brain to function normally. At the end of next week I see the brain surgeon.

Without faith in God we would have no hope nor way to get along.

*It is known that fasting and a ketogenic state can alleviate childhood epilepsy. While my seizure wasn’t diagnosed as epileptic: it can’t hurt to be in ketosis. Clinical evidence is still needed to see if Dr Warburg and others are correct that we can starve cancer by changing to burning fat (keystones) instead if glucose.
5-08:Stage 3 Rectal: 6/14 Nodes
Ace Surgeon Removed 90%Rectum & lots of Colon-Full Incision
Ileo Rev'd @6 Mos.
Radiation+5fu Pre-Surgery
FOLFOX 8 Cycles Done 1-09
Clear Scope 8-17; Clear CEA 2-18
Glory to God! Healed by prayers of many: for 10 years
7-18: tumor pressing against brain. Removed.
Metastatic to lung. CEA 6.9 Began Folfiri
CEA dropped to 4.5 after 1 dose of chemo!
After 8 rounds CEA=3.0,in range
After 3 week break CEA = 1.8
Finished 12 rounds of Folfiri.


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