To the newly diagnosed

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MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

To the newly diagnosed

Postby MikeManess » Tue Jun 07, 2022 4:38 pm

Well, folks, I'm still here after my original diagnosis in March 2016. I have a few thoughts on what I've been through to pass on to the newly diagnosed - offering hope as well as suggestions.

You'll probably be assigned a medical oncologist, who will refer you to a surgical oncologist for surgery to remove the tumor in the colon. Mine was a 10cm tumor in my right ascending colon. They removed the entire right ascending, as well as a part of my transverse colon. Like most that goes through this, I am now a simi-colon. Old joke on here, but it still causes people to smile.

For me, after the surgery and recovery, I had a chemo port installed because the biopsy of my tumor, etc, showed potential spread beyond the colon. Chemo was started. Initially it was Folfox (the chemical cocktail from Hell). My initial staging was stage 3, until I had my MRI and CT scans. The MRI/CT scans showed at least 4 tumors had spread to my liver (which is where most stage 4 patients seem to have spread to).

After discovering the tumors in the liver, Avastin was added to the cocktail from Hell. First bite pain, pain to cold surfaces, etc, were nothing compared to the allergic reaction. Most people seem to have an allergic reaction to Oxcilliplatin. My oncologist then added yet another drug to my cocktail from Hell - Benadryl. But he kept shoving the Folfox into me every two weeks until my neuropathy became so bad that I refused any more. To this day, my feet are mostly numb, and my fingers recovered to about 50% of what they were.

So we next went to Folfiri. A least under Folfiri I had no issues with constipation. For those who have not had Folfiri .. well, imagine two days of pretty much the same thing as the colon prep prior to a colonoscopy. A bidet attachment for the toilet is heaven.

So two of the 4 tumors in my liver eventually disappeared and surgery for the remaining two was scheduled. Try everything you can to never, ever sneeze after liver surgery - if you do, you'll know the meaning of the word 'pain' in it's truest form.

More chemo followed, then we stopped. But kept scanning every 3 months with MRI/CT scans.

It was discovered after about a year and a half that I had a recurrence in the liver. Originally, two of the tumors shrunk and were presumed to be gone .. so they were not removed during surgery. I think they started growing again, so it was not actually a recurrence, but a regrowth. The oncologist referred me to a surgical oncologist, but he declined to do surgery. So the oncologist referred me to a radiation oncologist, who zapped me with targeted radiation on the tumors. More chemo followed for a bit, then we quit.

Okay, that was 3 years ago and so far so good. A few suggestions for the newly diagnosed. First, the medical oncologist is not God. You and you alone are mostly responsible for your treatment. Follow his suggestions, yes. But do not be afraid to advocate for yourself. Be a partner in your treatment. Research the heck out of colon cancer and cancer in general. I have no idea why the medical oncologist is always the one in charge. Their potions, elixirs, and snake oil do not cure colon cancer. Folfox and Folfiri are not a cure. They can shrink tumors, they can help prevent cell shedding and met spread, but chemo will NOT cure your cancer. Only two things can kill cancer - surgery and radiation. Medical oncologists (who have a huge ego) will disagree, but surgical and medical oncologists will agree. To kill, you have to remove it, or radiate it. Until better treatment comes along, remember that the medical oncologist will not cure you.

Beware any oncologist who tells you how long you have to live. Let me repeat that - beware any oncologist that tell you how long you have to live. EVERYONE is different, and everyone responds to treatment differently. He or she has no idea how well you personally will respond. A quick anecdote: after my recurrence, we considered moving to Houston and going to MD Anderson. I was currently being treated at UT Southwestern in Dallas. I thought maybe MD Anderson might give me a better chance. We had transferred my medical records to MD Anderson, so they had my history. During our initial visit, my wife asked the medical oncologist how long I had to live. He said 2 years or so. My wife cried all the way home and for two days after. I told my oncologist at UT Southwestern about this, and he was livid beyond livid. He flat out told me that no oncologist knows how long any person has. And for reference, that was a bit over 3 years ago - and I'm still NED. The MD Anderson oncologist was full of it. Needless to say, I remained with UT Southwestern and raised a big middle finger toward MD Anderson. They are not the miracle place I thought they would be.

I have followed my medical oncologist's advice and I take an Aspirin tablet every night. Evidence suggests that Aspirin does help prevent a recurrence. I also researched and found anecdotal evidence (and some Israeli research to support this) that RSO might also kill cancer cells. So a quick trip every year to a state that has recreational marijuana sales for some vials of RSO. I take a small maintenance dose at night .. mainly on weekends. Might not help, but doesn't hurt. I'm asleep when it hits, so I never feel the high. I do tend to sleep good, however.

Do not be afraid to play the cancer card when necessary. Because of the neuropathy in my feet, I got my medical oncologist to approve me getting handicapped plates for my truck. Whenever someone sees me park in a handicap spot and asks why I need it (because I appear to walk normally most times) I just tell them they can have my handicap parking if they'll take on my stage 4 cancer. That tends to shut them up (except for the occasional Karen).

A foot massager is heaven. It helps with getting at least some feeling in the feet, and also warms them (my feet nowadays are always ice cold to the touch).

Nearly 3 years of chemo takes a huge toll on your body. You will age at least 10 years from the effects of chemo. I pray for the day that chemo will not be used, but it does help prevent the spread.

Prayer helps for those that believe. I do, and I've had people I will never meet pray for me. I strongly believe it's one of the reasons I'm still here.

Do not give up hope. Stage 4 cancer diagnosis is not a death sentence. To me, being NED is part of the waiting game. Keep a cancer recurrence at bay as long as possible until newer and better treatment becomes available. Be prepared to play 'wack-a-mole' with recurrences until a cure happens.

Keep a healthy attitude. I did not curl up in a ball and wonder why me, and how long to I have to live. I have kept my sense of humor and love of life with me always. I have NEVER believed cancer would kill me. I'm 66, but still think I'm immortal. Thought of death has never entered my mind. That being said, go outside and watch a sunset. It's amazing. Feel the wind. Listen to children play, dogs bark, the rustling of leaves. Narrow your focus down to the present, do not dwell on the future. It'll get here soon enough - right on time. Take the time to live for today. And really never consider that you will not be cured.

Hang in there.
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

prayingforccr
Posts: 350
Joined: Sun Jun 28, 2020 4:44 pm

Re: To the newly diagnosed

Postby prayingforccr » Tue Jun 07, 2022 5:46 pm

Fantastic.

Valuable.

Intense.
11/19: colonoscopy
12/19: diagnosed with stage 3 rectal cancer 6+cm tumor
1-3/20: 20 sessions of radiation, mon-fri capecetibine+clinical trial drug m3814
7/20: 8 treatmentsFOLFOX
11/20: Primary tumor had complete response. Possible tumor deposits on latest mri. Biopsy negative for cancer.
5/21: Multiple lung nodules (3-6mm) on ct scan
10/21: md anderson gives me 1 year without treatment/3 years with folfiri/avastin (refused)
3/22 No growth in nodules 6 months
7/22 beginning sbrt and immunotherapy

ktex
Posts: 4
Joined: Sun Nov 21, 2021 9:48 am
Location: DFW Texas

Re: To the newly diagnosed

Postby ktex » Tue Jun 07, 2022 10:36 pm

That’s Awesome'! Thanks for sharing. I’m in the DFW area and going to find a different oncologist. If you don’t mind me asking who is yours and would you recommend them?
M 44yo DX 10/21
Stage IIIb CC, G2, 2/29 LN +
Sigmoid recection 10/21
Start Folfox 6 cycles on 12/1/21
6/22 CEA 2.3 (3.2 pre-resection)

aquarian_asian
Posts: 28
Joined: Wed Jul 07, 2021 7:07 am

Re: To the newly diagnosed

Postby aquarian_asian » Wed Jun 08, 2022 8:44 am

Good and must read.
thanks
Feb 2021 - Dx Stage3B - rectal cancer (Age is 48, Male)
April 2021 - Radiation - for a week (5 mins x 5 days)
May 2021 - LAR surgery
Pathology: G2, LN+ PVI+, Lymph Nodes 5 out of 22
Temporary Ileostomy
Jun-Aug 2021 - Chemo 4 cycles 3 months (CAPOX)
Feb 2022 - Ileostomy reversal

Nor Cal
Posts: 56
Joined: Sun Dec 06, 2020 8:18 pm

Re: To the newly diagnosed

Postby Nor Cal » Wed Jun 08, 2022 5:28 pm

Great stuff Mike, and thanks for sharing.

One point to pick would be that not all oncologists are ego maniacs playing god. Mine is very up front about what chemo can and cannot do, the likelihood based on the lit, exploring all of our options, presenting my case regularly at the tumor board, getting 2nd and 3rd opinions, etc... I understand this is not the case for everyone, but people should know that there are great oncologists out there, and we all deserve to have one. They just happen to be the member of the care team that you see the most as they generally have the lead on your case.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - Present: 31 cycles chemo (All the various 5-FU regimens)
December 2020 - February 2021 Y90 Radioembolization, Chemoembolization x2

User avatar
MikeManess
Posts: 90
Joined: Fri Apr 01, 2016 3:56 pm
Location: Forney, Texas

Re: To the newly diagnosed

Postby MikeManess » Wed Jun 08, 2022 8:04 pm

My oncologist was really, really good .. but regularly ignored the tumor board recommendations and ignored standard protocol. He kept shoving chemo into me far past normal protocol. The result is that I am almost certainly resistant to chemo (or at least Folfiri).

I did not mention in my original post things like fatigue, nausea, and being on the chemo weight loss plan. I went from 238lbs to 191 fairly quickly. And about the time I started to feel human again, it was time for another round. When I had my recurrence/regrowth, I would just drive by the hospital and get very sick to my stomach. The act of even thinking about chemo would make me want to vomit. It happens. You just have to endure it.

I'm not telling anyone what to do - there are those that support alternative therapies, or the holistic approach. Do what you have to do, but for me I took the medical path. My late wife took her own approach and didn't survive beyond 8 months after diagnosis. Of course, she had ovarian cancer, which is a whole other world beyond colon cancer. But at that time, I vowed if I ever had cancer myself, I would listen to doctors.

I'm still here. :D
3/11/16 Colonoscopy - 9 benign polyps, 1 large cancerous tumor in right ascending colon
4/19/16 Right colectomy
6/3/16 Two liver spots detected, added Avastin to Folfox
12/20/16 Liver surgery. Pathology shows no active cancer cells
6/7/17 Final chemo
12/5/17 Port removed
05/23/18 Liver tumor discovered in scans
04/04/19 Radiation treatment
08/15/19 Additional radiation treatment
08/21/19 NED again

Husbandworried
Posts: 17
Joined: Fri Nov 12, 2021 9:54 am

Re: To the newly diagnosed

Postby Husbandworried » Wed Jun 08, 2022 11:11 pm

Thank you for your story.

Claudine
Posts: 694
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: To the newly diagnosed

Postby Claudine » Thu Jun 09, 2022 11:03 am

Do not give up hope. Stage 4 cancer diagnosis is not a death sentence. To me, being NED is part of the waiting game. Keep a cancer recurrence at bay as long as possible until newer and better treatment becomes available. Be prepared to play 'wack-a-mole' with recurrences until a cure happens.


We're exactly in that boat. Couldn't have said it better. Thank you for visiting the forum and sharing your story!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary
Lytic met 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
Multiple small lung nodules (03/19) now gone/calcified
L3-L4-L5 fusion surgery and partial corpectomy 05/20
CEA since 03/19: high 81.1, low 3.2, now 66
MRI 2/11/22: rectal adenocarcinoma pT3 pN0 stage 2A
LAR surgery April 11


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