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Hubby's chemo starts Monday....also, what about DCA?!

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Hey all! Sorry I haven't been posting the way I should. So, here's where we stand. Jason had the port put in today, all went well. He goes Monday to start his chemo. This is what he's gonna be on....(in no particular order?) Folfox every 2 weeks, & 5-FU over a 48 hr. period (via pump) then the oncologist said he will monitor his condition & when he feels it is safe (due to the cancer being in his duodeum?) he will start him on Avastin every 2 weeks via I.V. He said it increases the chances of bleeding, so he wants to ease into it as not to make him bleed from the duodeum. (please bare with me, I may or may not be telling you all right, so if I'm not, please don't care to correct me! I welcome it! =) One other thing, I put a post on here saying that Jason has Lynch Syndrome, we found out that it isn't definite that he does have it. They did one test, which came back negative, but the dr. said that doesn't mean he doesn't have it. He has all the tell tale symptoms (right side cc, his age, & family history) so now that he has TennCare (YAY!) which will cover the costs of the other tests, they will perform the more advanced tests to see whether he has it or not. Jason is very depressed, with good reason, & I don't know what to do for him. I am staying positive (with the occasional cry session in the bathroom by myself, but never in front of him). I'm hoping that once the chemo starts & (hopefully) the tumor begins to shrink, he will feel better & hopefully will feel more like eating, & can gradually get back to his old self. (I miss hearing him laugh....) Well, that's about it I guess. OH! One more thing....what about DCA? One of Jason's friends told him about it, but said it's not available in the US? I know some of you posted NOT to use it without a prescription, etc. which I would never do, but I did look online & found several different things, different sites that sell it, or what I "think" is it? Are there other things with the same name? I'm just curious, because if I can find out it CAN be prescribed I will definitely ask his dr. about it. Thanks to all of you in advance, & please don't take it personally if I don't reply to everyones posts individually....I'm still trying to learn how to maneuver around the site, but I thank ALL of you for all your help & for just being here to listen to me....as lost as I am. lol Take care & God Bless, Kris

jen2012
Posts: 1195
Joined: Aug 2012

Hi Kris..have you asked the doctor for something for Jasons depression? Its really hard not to be depressed! They can give him something that should help though. Starting treatment may help too...you feel like you are doing something! My husband just finished his 13th treatment about an hour ago. He hates the pump but has been a trooper through it all. I hope you guys can hang in there and he finds his appetite and gets some joy back. I bet he will. We still have lots of times when we are down....but nothing like it was in the very beginning. I hope the treatment goes well! Did they give his a steroid to start on sunday?

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Yes, they gave him something....well, actually they gave him Ativan for his anxiety. He gets so anxious that it makes him nauseous, but he has been on Citalopram for years for depression. He hadn't been taking it since he came out of the hospital when they did the first surgery on 3/8. I think they gave it to him one time in the hospital. Then when he got home, he had the hiccups for 6 days, which made it very hard for him to eat or anything, so he said he didn't want to put any more in his stomach than he had to, so he refused to take the Citalopram. He has started taking it again a couple of days ago though, so I pray it starts working & is enough for him. As for a steroid, no, they didn't give him anything to take.....should they have?

jen2012
Posts: 1195
Joined: Aug 2012

I dont know if all docs prescribe the steroid. I was going to warn you of some of the side effects. My husband takes it the day before...day of and two days after. It was keeping him up at night so they cut the dose. He also felt more sick after the first treatment than the others...so if Jason feels crappy next week it doesnt mean that he'll feel that bad every time.

Trubrit's picture
Trubrit
Posts: 1418
Joined: Jan 2013

Don't ever worry about not answering every post, or even posting when you don't have the time or energy. We will still be here, thinking of Jason and you as you travel this path. 

I think the worst part for me was the waiting, waiting, waiting. I was happy to start the chemo, and feel like something was being done. Of course, I'm sick of the side effects, they can be really miserable, but we must keep in mind what it is doing for good inside us, and not just the bad. 

I don't think it would hurt for Jason to see you cry.  Sometimes I think my husband doesn't care (I do know different, but in those dark moments), because he is being so stalwart. But alas, you know your husband and will make the best decision. 

Come join us here when you can. We will be praying or sending our bestest thoughts every day regardless. 

Hugs for Jason and for you.

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

I know, the waiting is the worst! I'm so glad that something is finally being done....I do dread all the side effects though. I think the thing he is most concerned about is the cold sensitivity. That is really gonna suck. Especially since he walks around with a glass of ice water all the time. So, any suggestions regarding that would be greatly appreciated. And I'll try to do better about posting in the future. =) Take care & God bless you ALL! Kris

Trubrit's picture
Trubrit
Posts: 1418
Joined: Jan 2013

I have learned, and very fast, to enjoy water that has been nuked for about 40 seconds.  I drink my milk warm and warm up my OJ and AJ with different spices. - The warm water is for the constriction of the throat -

I'm only on my third chemo (FOLFOX, 5FU) and have not yet experienced any real sensitivity to cold. I don't doubt it will come as the treatments progress, so I enjoy these days when I can still touch things that are cold. 

amyedwards
Posts: 10
Joined: Mar 2013

YOU BOTH CAN DO THIS... We Did SO YOU CAN! GAME ON!

My hubby Bill (stage IIIC 2010) did 12 rounds of 5FU like a Boss! December 2012, he had a small lung met removed and we are now 8 rounds (finished 4) of  5FU (no oxaly) ... Tough, very tough but he handled his 12 rounds in 2010 much better than most for the following reasons: 

Talk to your Doctor - if you don't already, keep a notebook and every time you see the Doc, tell them everything (no matter how small) that you observe that is "different" they can only help you if they know the side effect your husband is experiencing. Bill had side effects that were different than many folks, and many that were the same... but every single person's experience is slightly different.

no nausea - took his nausea meds religiously (assume you'll have a low level and like pain... stay ahead of it) our Doc prescribed 3... just assume you are queasy and always take the first one as scripted.. if while taking that he felt ewwy, then he took a sublingual.. There is no need to feel queasy... drugs are too many and too good for that

drink, drink - stayed hydrated, stayed hydrated, stayed hydrated...oxaly, so nothing cold, but hot tea, Ensure, and found couple of bottled teas he liked.. FIND SOMETHING they like to drink and keeeeeeep them drinking it...after the pump is taken off, you have GOT to flush those kidneys. you have to push them.

eat, eat- you don't have to like it... you have to DO IT! He didn't like Ensure, but he drank it, soups that worked with the weird tastebuds (Amy's organic Tomato Bisque, Thai Tom Kha (coconut milk)... he had a lot of throat problems (oxaly) so...wet food, broths, rice, wonton, pasta, mashed potatoes. he actually really likes curry so.... thai food and sometimes indaian actually worked better. the stronger flavor "cut" through the weird mouth sensations and weird tastebuds.

head meds - tell the doctor about the depressionm, anxiety and anything else odd that seems to be going on and get meds that will help.

ATTITUDE - work hard to help him/you keep a good attitude, and fake it till you make it... he wore tiki beach shirts to the lounge, this round he wears silly hats, he doodles on his Fisher Price Doodle Pro...we drink ginger ale from martini glasses. just because you are taking chemo doesn't mean you should NOT be laughing... in fact you need laughter now more than ever. When the going gets tough. The Tough Get SILLY! well, at least in our house.

LOVE, LOVE - Bill and I both had to ask for and be willing to receive the love and help of our friends and family. You cannot go this alone. As the patient or as the caregiver. Tell his friends to send him cards, send his chemo suite cookies, silly hats, balloons... anything that reminds you both you are loved and held in their hearts and prayers to carry you both through this.

Drink, Drink, Eat, Eat. Laugh and Love.


 

Happiness and Health.

Peace be with you all.

Mama Kittey AJ

 

 

 

 

 

Trubrit's picture
Trubrit
Posts: 1418
Joined: Jan 2013

This has to be the BEST post I have ever read here.

Thank you so much for being so detailed. 

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

That is JUST what I was thinking! VERY good advice! Smile

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

WOW! THANK YOU for such an awesome post! I will definitely put your suggestions to good use! The thing is, Jason IS a very happy person.....his laughter is one of the things that I fell in love with the most about him. He has such a good sense of humor & I miss his laughter so much now, because it just isn't there. He is on meds for his depression & anxiety, plus he has friends....gosh, he has SO many friends. They put a fundraiser together for him & it was held today & just let me say that we won't have to worry about our bills for a few months now, thanks to all of them. And my friends & family have been great too!....I honestly don't know what we would have done had it not been for the help of our friends & family. And I am SO proud to say that we now have even MORE friends! YOU & all the wonderful people here! I feel so blessed. THANK YOU to you, & to all the wonderful people who are willing to give up time in your busy days to help us. That isn't something you 'have' to do, it's something you do because you care & that really means a lot to both Jason & I. Maybe one day I'll be able to help others in the same way, but as for now, I'm sure glad we're not having to go through this alone!.... I'm learning new things everyday thanks to everyone here! ((((HUGS))) to all of you! Take care & God Bless, Kris

renw's picture
renw
Posts: 282
Joined: Jan 2013

Every one reacts differently to chemo, but if it helps to get an idea of what to possibly expect, here is a detailed description of my first 5 Folfox cycles. 

http://www.mcrc4.com/?p=56

amyedwards
Posts: 10
Joined: Mar 2013

RENW - wonderful treatment blog. so many similarities with my Bill's treatment. a goldmine of info for those starting out on the journey! PEACE be with you!

Trubrit's picture
Trubrit
Posts: 1418
Joined: Jan 2013

It doesn't take long for us to realize that we can give back, even if its just comforting words, prayers, support. It doesn't have to be big at this time, in fact big isn't what you need to be thinking of, Jason and yourself are the most important thing right now, but you do give, even now, when you reply to someones post and tell them you'll pray for them. 

This is a wonderful place. I come every day, sometimes several times a day. I come to be lifted and I come to lift others. 

We're all part of Jason's journey. 

HUGS!

amyedwards
Posts: 10
Joined: Mar 2013

Trubrit- so right on! every hug, every prayer, every smile helps in the healing.

MANIFEST HEALTH AND WHOLENESS IN BODY AN SPIRIT for Jason and Kris and everyone in need!!!

gizzyluv's picture
gizzyluv
Posts: 143
Joined: Feb 2013

Everything you said is so true....I honestly don't know what I would have done if I had to face this thing alone. Don't get me wrong, I've had my friends & family to talk to (on the phone mostly) but like now, it's almost 11:30 pm....no one is up but me, not here or anywhere I could call during the day, so yes, it does help to just be able to get on here & see how everyones days have gone or to just let them know I'm thinking of them & praying for them the way they are for Jason & me....and it means so much. This site is truly a blessing & is full of angels, that's for sure! ((((HUGS)))) to you ALL!

amyedwards
Posts: 10
Joined: Mar 2013

Love and Light to you Kris!

Be good to yourself today. The Caretaker needs TLC!

Everyone's journey is personal. as our Onc Doc said "...everyone's cancer is unique." Jason is "inside" the disease; his view is different and being sick makes people react differently...both as the patient and as the caretaker. You and Jason just have to understand that this changes you both; you will see sides of each other...good and bad... you may never have known existed. Be aware, talk to each other to check in often, be educated, understand that both of you probably will react to many things very differently than you would have imagined. That's OK, You have to fight every day and take care of yourselves every day. The two of you are THE Priority. Jason is fighting for his life and you are beside him clearing his path and holding him up. Together you will do this! One day at a time, one treatment at a time.

Bunny Slippers nd Hot Chocolate for EVERYBODY TODAY!!!

 

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