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Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Mon Jun 28, 2021 5:24 pm
by Carolinahusker
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Mon Jun 28, 2021 5:31 pm
by saltygirl
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:-)
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Tue Jun 29, 2021 1:26 am
by I_will_fight
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?
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Tue Jun 29, 2021 11:29 am
by Carolinahusker
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Wed Jun 30, 2021 7:50 pm
by boxhill
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Wed Jun 30, 2021 11:20 pm
by Carolinahusker
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Thu Jul 01, 2021 10:38 am
by mariane
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!
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Thu Jul 01, 2021 10:43 am
by mariane
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Thu Jul 01, 2021 10:55 am
by mariane
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Thu Jul 01, 2021 1:52 pm
by O Stoma Mia
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 soreshttps://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=50402&p=386196#p386196
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Thu Jul 01, 2021 3:47 pm
by Nor Cal
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Mon Jul 19, 2021 7:45 pm
by Carolinahusker
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Tue Jul 27, 2021 12:10 pm
by Carolinahusker
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Tue Jul 27, 2021 1:46 pm
by Hooandtrue93
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.
Re: Stage 4 Rectal Cancer 45yo Wonderful Woman
Posted: Sat Aug 14, 2021 2:11 am
by Carolinahusker
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.