My fiance , 33, gets Stage 4 diagnosis...

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StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Sat Nov 14, 2020 1:18 pm

Thank you Lee. She is going to try and eat this time before chemo. Last time she didn't and it was terrible so. She drinks a lot of water anyways but I will tell her to try a little more. They did say if she wanted to, it might help to go in like a day or two before and get fluids/meds pushed through an IV. I will tell her about losing taste buds, she might hate that worse than any of the other side effects lol.

I will definitely look into disability , I'm hoping I can get it rushed , but with how crazy covid is here and government agencies working from home , it might be a mess. Thank you for all the advice.

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby boxhill » Tue Nov 17, 2020 12:45 pm

I never lost my sense of taste with folfox. The one side effect I would have liked to experience was weight loss, but alas, never lost my appetite after I recovered from surgery. :)
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 lymph nodes 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
8/20 MRI NED

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Tue Nov 17, 2020 8:50 pm

Right Boxhill! We joked with the navigator about the weight loss side effect. Saying we needed to get rid of the covid weight we both put on anyways and can i just get a small dose as well. Sometimes gallows humor helps more than anything and at that time we just needed a little laughter.

It seems a lot use FOLFOX and it's successful, from posts on here. We were kinda down in the dumps after her last treatment went so poorly (Dr does feel it was "completed" though), mainly because it was disheartening because they wanted to hit her hard and fast with FOLFOXIRI.

Little bit of sketchy news , our governor decided that hospital staff that have Covid can work during it. It's supposed to be only the Covid wings , but with how terrible the state is and how flooded the hospitals are who knows.

Thank you all again

shaina
Posts: 5
Joined: Mon Oct 12, 2020 11:11 am
Facebook Username: shaina.leskin

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby shaina » Wed Nov 18, 2020 2:40 am

Hi, Strong Enough.

You have to be mentally strong enough and positive!
I am a pre-vivor (only 2 years in) stage IV with spread colon cancer lady. My statistics on survival were also very frightening. However, please try and remember this. Your partner is NOT a STATISTIC, she is a PERSON. And every person is different, with different diagnoses and different strengths and conditions.
She's still relatively young, so that should help her have the physical strength to go through the chemo and whatever else they suggest. Sometimes it is a matter of playing around with chemo till they get the right regimen.
The shock comes greatest at the beginning, till you both begin to adjust to a new reality. Then it's a matter of getting through it, with as much physical and emotional support as you can get hold of. Please join whatever groups are in your area for support, you will need it. Don't say, "No, we can manage" if you do need the help, and don't be afraid to ask. If not now, when.
Wishing you much strength, love, and hope from a stage IVb pre-vivor who hopes to be a survivor!

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Wed Nov 18, 2020 2:21 pm

Thank you for the wonderful words Shaina and I'm so glad that you are doing ok. I consider you and everyone else here a survivor , whether that is just 1 more day or 10 years. I feel it is a badge of honor. Same with hair loss or scars. It means you went through hell for just the chance of one more day. I think that is beautiful.

The statistics are scary, but you are definitely right. She is a person and as scary as all this is , she does have some positives going for her. It is a new normal we both have to adjust too.

As for help physically,emotionally,financially etc... I never thought it would be so hard or so complicated. You quickly get so overwhelmed it feels as though you are in quicksand. I did start looking into programs to help financially , might also set up a gofundme to try and help. Physically I'm still at a loss as to what can be done. Emotionally I don't really have anything (besides here I guess)she has her mom but it's more "I just need to cry" which is good , she needs that. Will be looking into groups and the like for her.

I get called a hero or an inspiration a lot. It's something I struggle with , even more now. It was always her that brought me back to center or it was her who always took care of me after surgeries or on those days where I couldn't walk or get out of bed. She is my hero. So are all of you. You are brave and give me hope. I just want you all to know that you have given me so much.

mariane
Posts: 683
Joined: Sun Sep 13, 2015 6:16 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby mariane » Sun Nov 22, 2020 10:54 pm

Hi!
I am one of Dr. Kemeny's patients. I got diagnosed in June 2015 with 10+ mets in my liver. I recommend second opinion at MSKCC, Dr. Kemeny truly saved my life. I have been NED since 05/2016, off chemo, living my normal life. There is many of us, pumpers, now. We have facebook group where you can get more info from people currently in treatment. I highly recommend it. Most of pumpers focus on every day trouble and don't revisit very often this forum. I can answer any of your question. Good luck!
mom of now 11 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: 683
Joined: Sun Sep 13, 2015 6:16 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby mariane » Sun Nov 22, 2020 10:56 pm

FOLFIRINOX/FOLFOXIRI is the same chemo I had as first choice of chemo. It gave me complete pathological response and hope.
mom of now 11 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!

StrongEnough
Posts: 12
Joined: Tue Nov 10, 2020 9:15 pm

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby StrongEnough » Mon Nov 23, 2020 7:41 pm

I am so happy to hear how well you are doing and that it worked for you!!!

A second opinion sadly might not be in the cards. We are in ND (yep Covid capital of the world) and besides travel and hospital restrictions, the distance to get to another Dr and make it work just isn't in the cards.

The thyroid was supposed to be read by today , but didn't hear anything. Her FOLFOX chemo on Friday went extremely well. She had to have the at-home medicine pump over the weekend and that went relatively well. Today she is definitely getting hit by the nausea. She is having cold-issues like fingers or drinks feeling excessively cold to the point of pain. Overall though this last treatment went way better than the first. We were pretty down at her terrible reaction to FOLFOXIRI , so even at a reduced chemo session I believe this was a win even if she isn't getting hit as hard as we would like.

boxhill
Posts: 641
Joined: Fri Apr 06, 2018 11:40 am

Re: My fiance , 33, gets Stage 4 diagnosis...

Postby boxhill » Mon Nov 23, 2020 9:27 pm

Be aware that you can get a second opinion by sending everything to the doctor rather than visiting. I'm sure this is even more common nowadays.

If the cold thing is bothering her, she should drink only warm beverages, not even room temp.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
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 lymph nodes 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
8/20 MRI NED


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