Update (treatments & CEA)

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AlexandraZ
Posts: 178
Joined: Fri Aug 23, 2019 8:25 am

Re: Update (treatments & CEA)

Postby AlexandraZ » Fri Jul 03, 2020 4:17 pm

Hi Rachel!

Thanks for the update. Been thinking about you lately!

My boyfriend had the WORST reflux on FOLFIRI. Mainly around the treatment days. FOLFIRI really does a number on any mucous membranes and guess what, that's the entire digestive tract. :shock: My boyfriend got some relief from aloe vera juice. He also took sachets of bicarbonate (I think that's what's in them). They're called Samarin in Denmark, don't know what they're called in the US. Anyway, that helped. But it was one of his most bothersome side effects for sure. I remember I also googled to find which foods aggravated acid reflux and which foods might help. For what it's worth, he's on low-dose Xeloda now and barely has any side effects at all. Might be due to the low dose, but it definitely seems more manageable.

Best wishes to you! :D
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Claudine
Posts: 490
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Update (treatments & CEA)

Postby Claudine » Fri Jul 03, 2020 5:59 pm

And I’ve been wondering about you, Alexandra! How is Jesper doing? Low dose Xeloda with minimal side effects sounds very positive!
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 75.5
Scan 03/19: Multiple small lung nodules, now gone
PET 04/20 uptake by L4
L3-L4-L5 fusion surgery and partial corpectomy 05/20
Scan 03/21: stable

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Sun Jul 05, 2020 12:38 pm

Hi Rachel!

Thanks for the update. Been thinking about you lately!

My boyfriend had the WORST reflux on FOLFIRI. Mainly around the treatment days. FOLFIRI really does a number on any mucous membranes and guess what, that's the entire digestive tract. :shock: My boyfriend got some relief from aloe vera juice. He also took sachets of bicarbonate (I think that's what's in them). They're called Samarin in Denmark, don't know what they're called in the US. Anyway, that helped. But it was one of his most bothersome side effects for sure. I remember I also googled to find which foods aggravated acid reflux and which foods might help. For what it's worth, he's on low-dose Xeloda now and barely has any side effects at all. Might be due to the low dose, but it definitely seems more manageable.

Best wishes to you! :D


Mine is the same, it's mainly around treatment days. Tends to start the evening of day 1 and doesn't go away until 2-3 days after disconnect. I picked up and started some things (priIosec, gaviscon and carafate) that I hope will help in prepraration for my next treatment on Thurday. Thanks for the advice Alexandra, always nice to hear from you. Wishing you and Jeseper the best!
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Cured
Posts: 573
Joined: Thu Nov 27, 2008 10:53 pm
Location: MO

Re: Update (treatments & CEA)

Postby Cured » Wed Jul 08, 2020 11:01 am

Rachel and all, 5FU is THE CHEMO for colon cancer treatments. It has proven itself for over 30 years (an Onc RN claimed 50). I believe it’s better to take a break when your body tells you that it is over-stressed. Irinotecan can cause explosive diarrhea- but otherwise I haven’t felt horrible effects from it. They load me with atropine before infusion to help avoid that (not going into horror stories of filling pants during infusion). I wear diaper when getting Irinotecan - but for recent rounds haven’t experienced diarrhea. But I keep Lomotil (diphen/atrop) handy as it works like an off switch when the diarrhea hits.

I persevered through FOLFOX 11 years ago; I feel the impact of the Oxaliplatin to be more uncomfortable, so am glad the Folfiri is working on me.
NOW I am taking a BREAK from chemo to rebuild my immune system. Decrease mouth sores, sore teeth and be able to fend-off viruses. Plus for hair to grow back.
I strongly believe one must be in touch with his/her body. How will you beat the cancer if your body is knocked down to an unhealthy state?

For nausea they prescribed both Ondansetron & Prochlorper to use and alternate as needed. At times I just take a Tum and just gut-out the yechy feeling.

I am gently beginning the protocol with Fenbendazole (see www.mycancerstory.rocks). A 2008 study shows that FZ immediately built neutrophils in mice. So even if this dog dewormer doesn’t beat cancer, if it gets my white blood counts up (as it appears to have done) then it’s worth trying.

KETOGENIC STATE; I am keeping in Ketosis in an attempt to starve the cancer. Human Studies seem to have shown it HELPS YOU TOLERATE CHEMO at least.
I wish that cancer-INC.would more seriously accept the findings of Otto Warburg from 100 years ago. Some are now investigating how our bodies run fine burning fat/ketones and that cancer can’t, as it prefers the sugar/glucose.
5-08:Stg 3 Rectal: 6/14 Nodes
Ace Surgn Remvd 90%Rectm,lots of Colon-Full Incision
Ileo Rev'd 6 Mos.
Radiatn+5fu Pre-Surgery
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 against brain Removed
Metastatic to lung. CEA 6.9
Folfiri
CEA 4.5 after 1 chemo
8rds CEA 3
CEA 1.8, 2.3,1.7,2.2,5.7,5.3,2.3.4.8,8.4,9.1,10
12 rd Folfiri
Avastin ev 2 wks
Seizure Anti-seiz meds work-no driving for 6m
4-20PET: Lng spots=Chemo
2-21 tumor gth =Folfiri

rachelfromnyc
Posts: 59
Joined: Fri Oct 04, 2019 11:32 am

Re: Update (treatments & CEA)

Postby rachelfromnyc » Fri Jul 10, 2020 10:16 am

Thanks for chiming in, Cured, about the 5FU question as well as sharing some of the things you're doing. I agree with being in touch with one's body and keeping healthy to beat the disease. I know that I'll have to take a break at some point to allow for healing of the immune system. But I have to get control of this thing and have consecutive stable scans before that happens. At what point were you ok to take a break safely?

I met with my main doctor earlier this week and talked it through. Long story short, she is putting back the 5FU. So I am back on Folfiri and Avastin every two weeks starting today with a scan to follow in three months. She said patients can be on this for years and years so I really need to get a handle on the side effects if I'm to do this long term. I have new anti nausea medication to try so let's see what happens.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin


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