14 yrs later: alive but metastatic: Radiation tomorrow

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Cured
Posts: 580
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

14 yrs later: alive but metastatic: Radiation tomorrow

Postby Cured » Tue Jul 12, 2022 2:51 pm

I have been isolating during the Covid era due to CRC tumors in my lungs. Praying, fasting and regularly partaking of the Body & Blood of Christ. Have felt good.
But now the tumor has grown & conglomerated in my lung, trying to choke my airway. Causing me to cough-up mucus with blood. I need a CPAP machine at night to keep my oxygen levels up.

Wednesday I get my first IMRT radiation treatment. I hate that the Onc referred to this as Palliative care. I want to kill the cancer and move on with my life. I changed doctors and cancer center to get better attention.
Away from the Onc who said: " I don't cure cancer. I only treat it." Ideally I obtain the Abscopal Affect as well.

You who have had radiation to lung: Please offer what I should expect in impact.

I recall a post by a woman a few years ago who didn't exactly meet the specs to receive Immunotherapy: but was able to be treated with Ketruda and it worked to heal the cancer in her lung. I would love to hear from her.
The darn Oncs won't allow me to receive Ketruda or any PD1 inhibitor (which may well help, by my research) since I am MSS. They only give to those who show as microsatillite UNSTABLE.

I live by God's grace and hope for the best for you all as well.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:18
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

Nor Cal
Posts: 64
Joined: Sun Dec 06, 2020 8:18 pm

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby Nor Cal » Tue Jul 12, 2022 3:47 pm

If I recall, the Keytruda for use on MSS patients was based on people with a "medium" Tumor Mutational Burden. If you know your TMB% that may help with research. Sorry not to be more helpful.

There was also a thread recently about a trial for other immunotherapy drugs on MSS patients. You may want to look into that. https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=66252
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. CEA 120.
BRAF+ TMB 5% MSS TDL1-1%
July 2020 - Present: 34 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

roadrunner
Posts: 272
Joined: Sun Jan 12, 2020 8:46 pm

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby roadrunner » Tue Jul 12, 2022 10:33 pm

I am sorry you are going through this. It sounds hard. I hope the radiation will turn things around for you. I had radiation on a small nodule in February (5 or 6 mm). I had no noticeable side effects. My WBCs appear to have improved after the therapy—not sure if that was the radiation (some studies have shown this effect) or just the passage of time from my other treatments. I’m also not certain if my experience will be repeated in your case, since my nodule was small, but I hope it is.
7/19: Rectal cancer: Staged IIIA, T2N1M0
approx 4.25 cm, low/mid rectum, mod. well diff.; lung micronodule
8/22 -10/14 4 rounds FOLFOX neoadjuvant, 3 w/Oxiplatin (side effects/reduced 70-75%)
neoadjuvant chemorad 11/19
4 rounds FOLFOX July-August 2020
ncCR 10/20; biopsies neg
TAE 11/20, tumor cells removed
Chest CT 3/30/21 small growth in 2 nodules (3 and 5mm)
VATS 12/8/21 sub-pleural met 7mm.
SBRT nodule 1/22
CT 3/22: Clear
Thoracic CT 5/19/22 Clear
6/20/22 TAE rectal polyp benign

Cured
Posts: 580
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby Cured » Thu Jul 14, 2022 7:04 pm

Guys, I wish the Onc would listen to you and these links.

For now, I have to pray that my body's immune system is strong, and will hold up to the radiation and go and kill more cancer.

This morning I did my 2nd dose of IMRT radiation. The treatment team seems skilled. But the newest machines rely on the computers to guid and curve the radiation by its' software.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:18
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

DarknessEmbraced
Posts: 3701
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby DarknessEmbraced » Sat Jul 16, 2022 7:15 am

I hope your radiation goes well. *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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

Cured
Posts: 580
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby Cured » Fri Jul 22, 2022 8:00 pm

As of now I have completed 8 of 15 treatments. You can't feel the radiation. They tell me not to expect much in side effects.
They will analyze attrition of the tumor by a CT done 3 weeks after the final radiation. So I won't have a medical report until the end of August.

Until then I need prayers and should get back to more strict fasting.

I have had trouble keeping my airway open; so have coughed quite a bit. My Pulmonologist ordered me an Inhaler of Albuterol Sulfate. But it hasn't done much. Probably because the main tumor is in the lowest lobe of my right lung. So this afternoon he ordered me a Nebulizer. It took some logistics on the part of the Pulmonology nurse and us to obtain the machine. They still need to change to the correct code so that Medicare will pay for it. The same at the pharmacy for the nebulizer solution. Since they didn't code it properly, I had to pay for a small amount to get started. Hopefully they can get this entered properly on Monday and everything goes through.

Most importantly, hoping this will keep me breathing for the next few days. If I have to pay out-of-pocket, then its better than leaving my family all of a sudden.
If any of you uses a Nebulizer: please advise.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:18
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22

DarknessEmbraced
Posts: 3701
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby DarknessEmbraced » Sat Jul 23, 2022 7:05 am

I hope medicare will pay for the nebulizer and that it will help you.*hugs* I use an nebulizer along with my inhalers and Mucinex during asthma flares. The neubulizer really helps.
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
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

stu
Posts: 1573
Joined: Sat Aug 17, 2013 5:46 pm

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby stu » Tue Jul 26, 2022 11:10 am

How are you getting on ? Hope things are going ok 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 .

Cured
Posts: 580
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: 14 yrs later: alive but metastatic: Radiation tomorrow

Postby Cured » Thu Jul 28, 2022 5:47 pm

Thanks for the replies and care.
The nebulizer does work. I began with only a mouthpiece to inhale. I returned to the DME and bought a mask, which makes it more natural to use.
When I saw the Radiation Onc on Monday, she noticed that I was not coughing as much. :)
The Pulmonologist said that there was no code which Medicare would accept to pay for either the nebulizer (and since not authorized, won't cover the medication either). Thankfully neither is very expensive.
I told the pulmonologist's assistant what the Onc Dr observed and she will get the report from her. (Earlier I said "either I can breath or I can't". Isn't that a good reason to authorize coverage?)
Thank goodness the government does not yet control ALL of healthcare in the USA.

I thank my friends and Christian prayers' for all of they'r prayers. And for our loving All Powerful God for being so All Merciful!
He created us as amazing creatures, and only our bodies can heal and correct our cells to eliminate the cancer.

I have 3 more treatments left. Then it will be 4 weeks before they do a CT scan to evaluate how much good has happened.
7-18 Stg 4
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radian+5fu Pre-Surg
FOLFOX 8 Cyc,1-09
Clear Scope 8-17; CEA 2-18
Glory to God! Healed by prayers of many: for 10 yrs
7-18: tumor pressing brain Remove
Met to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3 1.8, 2.3,1.7 then up:18
12rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumr gth =Folfiri
Radiation 7-22


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