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

[StrongEnough]

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]

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.

[StrongEnough]

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]

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]

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]

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!

[mariane]

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

[StrongEnough]

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]

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.