Stage 4 Rectal Cancer 45yo Wonderful Woman

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Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Mon Jun 28, 2021 5:24 pm

mariane wrote:Hi!
I also would encourage you to try the HAI pump path. I would also to FOLFOXIRI as first choice chemo. It's a strong coctail but strong first chemo matters on the way to NED...
Your nick suggests Carolina.


Mariane,

Is the concern that anything less than FOLFOXIRI is an indication that the doctors are in "palliative mode" rather than "curative"?

I used to live in Western North Carolina, but now I live in Colorado Springs. I just keep the same username for standardization. :)
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308

saltygirl
Posts: 39
Joined: Sun Feb 07, 2021 4:46 pm
Facebook Username: Salty.girl

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby saltygirl » Mon Jun 28, 2021 5:31 pm

I don’t think that’s the case. But good question for your wife’s oncologist. Folfoxiri is a hard regiment. It has high toxicity. But it could work well. I had full pathological response after 6 treatments. That means that during surgery no cancer cells were found anywhere. Not in 30 something lymph nodes and not in my tumor. Good luck to your wife! I am heading to Europe this week:-)

I_will_fight
Posts: 83
Joined: Mon Jun 29, 2020 3:38 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby I_will_fight » Tue Jun 29, 2021 1:26 am

ginabeewell wrote:
But I THINK I have figured out that icing during infusion makes a huge difference, and at least in my case, it was proven clinically better than Avastin. Thru various combos of drugs, it seems to be the magic ticket for me. So worth asking.

Finally, I loved the book Radical Remission and am so glad I read it shortly after diagnosis - it truly set the tone for my whole journey and gave some helpful guidance about how to approach. Mostly it made me hopeful! Between that and a very skilled therapist, I can honestly say that cancer is maybe the best thing that ever happened to me. You know, so long as I don’t die and mess things up. ; )


I tried icing as well to mitigate the acute neuropathy from the Oxaliplatin in my CAPOX course. It seemed to work (I cannot know how I would have fared without it, but the fact is that I did not experience cold sensitivity and my nerves have been recovering over time.

Have you looked into it?
46 yo male Spain
06/20 - 6cm T3N0M0 CC splenic flex
No liver mets, 3 and 4 mm lung dots (unlikely to be mets)
lymp 0/37
MSH6- other MMR+
KRAS mt G13D
V/LNI absent
PNI present
07/20 - hemicol surg, 13cm clear margins, optimistic surgn.
08/20 - CAPOX regime, 4 cycles.
11/20 - CAPOX completed. CAT scan: lesion in liver, suspect hemoangioma, no changes lung dots.
12/20 - Clean colonoscopy
02/21 - MRI liver lesion is nonspecific, stable.

Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Tue Jun 29, 2021 11:29 am

Her third infusion is today. Avastin is being added today for the first time to her normal FOLFOX. She is trying icing for the first time today as well. The PA was skeptical, but is allowing it.

We can add a mouth sore to the list of side effects.
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308

boxhill
Posts: 737
Joined: Fri Apr 06, 2018 11:40 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby boxhill » Wed Jun 30, 2021 7:50 pm

I'm so glad that she is responding to chemo!

I had a mouth sore issue early on that resolved itself and never came back. If she hasn't already, she should only use a very soft toothbrush. If the mouth sore becomes an issue, there's something people call "magic mouthwash" that evidently helps a lot. Perhaps someone will weigh in with more info.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 LN,5 mesentery nodes
5mm liver met
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 and 11/18 CT NED
12/18 MRI 5mm liver mass, 2 LNs in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Stop Key
All MRIs NED

Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Wed Jun 30, 2021 11:20 pm

Icing was a great success! She now has little to no cold sensitivity. She had to overcome some skepticism from the PA/nurses, but she pressed ahead and is now reaping the benefits.

Thanks for the tips on the mouth sores. I’ll pass them on.
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308

mariane
Posts: 694
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby mariane » Thu Jul 01, 2021 10:38 am

Hi!
FOLFOX can mean cure. :) Especially with Avastin. I know patients for whom it did. JulieJ comes to my mind first.
FOLFIriNOX is indeed toxic... I survived a few and got a complete pathological response.
Dr. Kemeny chose FOLFIRINOX as I was young and determined. She told me in general woman's liver can somehow survive more according to her experience.
I signed my consent form for a palliative treatment 6 years ago and got discharged to general practitioner this winter . I think every stage 4 patient has to sign this consent form. I cried signing palliative form in Atlanta... Dr. Kemeny always said that she had curative intent and reminded me about patients who have been living 20+ years after cancer and HAIP.
I also highly recommend HAI pump and Dr. Kemeny's team. I know it's far from Colorado especially during this never ending Covid uncertainty. I met a few patients who used to fly from California, MOntana, Texas, Chicago to NY.
Such a good response is wonderful!!! Congratulations!
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 694
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby mariane » Thu Jul 01, 2021 10:43 am

I had mouth sores, too. Dr. Kemeny recommended simple 1 tea spoon of baking soda and 1 spoon of salt wash. It worked. I still use it sometimes.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

mariane
Posts: 694
Joined: Sun Sep 13, 2015 6:16 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby mariane » Thu Jul 01, 2021 10:55 am

I wanted to add that with all the strong chemo that I received I was lucky to avoid neuropathy. I am very happy that your wife is doing so well.
mom of now 12 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

User avatar
O Stoma Mia
Posts: 1654
Joined: Sat Jun 22, 2013 6:29 am

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby O Stoma Mia » Thu Jul 01, 2021 1:52 pm

boxhill wrote:...I had a mouth sore issue early on that resolved itself and never came back. If she hasn't already, she should only use a very soft toothbrush. If the mouth sore becomes an issue, there's something people call "magic mouthwash" that evidently helps a lot. Perhaps someone will weigh in with more info.

Treatment for mouth sores
https://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50402&p=386196#p386196

Nor Cal
Posts: 36
Joined: Sun Dec 06, 2020 8:18 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Nor Cal » Thu Jul 01, 2021 3:47 pm

mariane wrote:I had mouth sores, too. Dr. Kemeny recommended simple 1 tea spoon of baking soda and 1 spoon of salt wash. It worked. I still use it sometimes.


I can 2nd this. Have just had a couple mouth sores which both went away the same day they showed up.
Dx June 2020, stage IV, w liver mets in both lobes. M, age 50. Right-sided colon tumor. BRAF mutation. CEA 120
July 2020 - September 2021 20 cycles chemo (FOLFOXIRI x9, FOLFIRI x9, 5-FU x2) + Avastin
December 2020 - February 2021 Radioembolization, Chemoembolization x2

Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Mon Jul 19, 2021 7:45 pm

Things continue to go well. She completed her fourth infusion (2 Folfox, 2 Folfox plus Avastin) last week. Side effects continue to be manageable. No more mouth sores. No more cold sensitivity. Foot pain, on the night prior to disconnect, is still there, but not as bad as the past two times. First bite is still a pain. In general she has good energy, although that drops a bit following the infusion. She did get a bit of anemia, but those numbers are improving now.

Had a bit of a CEA flare.
5/17/21 253.5
6/28/21 370.7
7/12/21 355.7

AST is in normal range now.
5/17/21 151
6/15/21 53
6/28/21 39
7/12/21 25

We can no longer feel the liver mass. In fact, the oncologist was so pleased with her progress that he ordered another scan which she completed today. The intent is to bring her case back to the tumor board. Hopefully, we'll know the results next week. Fingers crossed.
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308

Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Tue Jul 27, 2021 12:10 pm

Results from the scan are in. Mixed results. The rectal tumor is almost entirely gone (Yay!). The large liver met is shrinking (Yay!). But another liver met (1.4cm) has become "evident" (Ugh!). The board is concerned about the new met. She'll have another infusion of FOLFOX+Avastin, then the plan is 4 cycles of FOLFOXIRI and another "antibody thing (my wife's words)" assuming insurance approves, then scan and see if surgery is an option.

Insurance has been a bit of a pain. Apparently, the hospital filed a claim that implied I had other insurance that would make my insurance (Tricare) secondary. So Tricare decided to stop paying. We told them we don't have other insurance, so things should get fixed now, but we really don't need hassles at this time.

Speaking of hassles...today's infusion nurse refused to provide any ice to my wife to help with icing (which is working great btw). The last two nurses helped, but this nurse said that they shouldn't have. Why not you ask...because...Covid. Whatever. I got some ice and dropped it off for her.

I'm off to do some research on FOLFOXIRI.
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308

Hooandtrue93
Posts: 12
Joined: Tue May 11, 2021 10:28 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Hooandtrue93 » Tue Jul 27, 2021 1:46 pm

After this round if things are stable/no shrinkage (praying not the case), ask if they can ablate that tumor or their thoughts on radio-intervention on that tumor.
28 year old, son of 62 year old mom
Stage 3B Duodenal Adenocarcinoma.
7/13 lymph nodes positive
02/22/2021: Whipple Surgery
04/08/2021: Port Surgery. CtDNA test sample taken (positive)
04/13/2021: Folfox-6 begins for 6 months

Carolinahusker
Posts: 11
Joined: Fri May 21, 2021 5:11 pm

Re: Stage 4 Rectal Cancer 45yo Wonderful Woman

Postby Carolinahusker » Sat Aug 14, 2021 2:11 am

Thanks Hoo. We’ll ask if we get there.

She had her first FOLFOXIRI+Vectibix infusion this week. Side effects are still manageable. She hasn’t needed extra nausea medicine other than the premeds. She’s had a little bit of rumbling in her tummy, but not too bad. The worst side effect was just extreme tiredness. She was able to run some errands early in the day today, but was wiped out after that.

White blood cell count is a bit low, but anemia continues to improve. Liver numbers are good.
DW Dx 5/21/21@45
Kids: 10d/13d/17s/23d
Stage 4a Rectal cancer, Adenocarcinoma, 10 cm frm anal verge
T3N2pM1a, WT KRAS/NRAS/BRAF, MSI-Stable
4/22/21 ER, Liver mass 6.5x8.8x11cm
4/29/21 COVID+
5/13/21 ER, vomiting, Liver mass 11x7x12cm
5/17/21 CEA=253.5
6/2/21 Infusion start, 2 FOLFOX, 2 FOLFOX + Avastin
6/15/21 Rectal/Liver tumors noticeably smaller
6/28/21 CEA 370.7
7/12/21 CEA 355.7
7/26/21 CEA 353
08/6/21 CEA 308


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