Folfox Treatment #3 today

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okthen
okthen Member Posts: 232
edited March 2014 in Colorectal Cancer #1
Jacks platelets were 95000 after his chemo break (4 wks off total). Onc lowered the Oxal and the 5fu by 20 %. Infusion of cal/mag, chemo, then home with his pump.

He insisted he could cut up chicken and fry it while I did some work. After dinner he told me that the cold chicken about killed his fingers. Made a mental note to make sure Im getting things done without him during chemo...he just won't NOT do things if he thinks I need the help.
Been in the bathroom more and already jumped in a hot bath once...that damn burn...I was hoping with the reduction he would get through this time without it. Reminded him about the calmoseptine cream...it's hard to get him to start any new routines.

Jack asked his Onc this last visit why the 12 treatments? Who came up with that and why.
Doc explained studys to him, told us that at one time everyone got a year of chemo. Then a study was done, I thought he said in the 70's but I don't really remember, and it was shown that 6 months with the chemo was just as good as 12.
He said that a study started just last week to see if with the 3 drugs given with folfox, if 3 months would be just as good as 6.
He said although he had no data, yet, to prove anything he felt that 3 would be just as good, that is why he told us if Jack can get through at least 8 treatments, he will feel like that is as good as 12, with hopefully less side effects.

We'll see. I am so scared of this stuff that I want him to have 32. (o; I know, that is mean. I just want him to be OVER with this, like us all I'm sure. Scared the begeezies out of me that he skipped one.

I also went to Onc appointment with a list of prescriptions...something for sleep, anxiety, pain and depression. He is NOT a pill taker, could barely get him to take a Lortab after his resection, sigh. Decided I would let his Doc explain what each med was for and what it would do & not do to him. Jack listened and agreed to get the meds, now wish me luck to actually get him to take any of it. lol

He has these moments where he really seems to get worked up. NOT questioning why, I get that...just need to figure out how to get him to calm or take something when he feels this desperate...I love him so much, don't want to see that fear in his eyes. I wanna see 'em twinkle with happy again sooo bad.

Still feel like the cal/mag has to be helping...(thanks Craig!) His cold sensitivity is there, but he says not horrible. Thank the Lord, he would have never went back after #1 if it had been.

I'll stop rambling for now...Hugs & prayers to you all!!
Chriss

Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Chriss
    So glad that you are feeling better with Jack back on chemo.

    About the getting worked up? It might be from the Dexamethsone ... if he is getting that with his infusions. I know most of us get it. It's also known as decadron. It is a steroid. It helps with nausea but it can also make people irritable, angry, sleepless, hungry and overall uppity. You might check with the onc as I know some will lower the dose if there are undesirable side effects like extreme irritablilty and sleeplessness. I know the day of my infusion when I get it I can tell I'm geting irritable. I'm usually the type that just let's things flow by me but, not for a few days after the dex. I also get really hungry and usually stop to eat right after. I also usually feel like I can take on the world ... but, the next morning, I will pay for it if I try to so, I've learned not to go along with my head so much when it is full of dex. Maybe if his dose is lowered he'll not get so worked up.

    You are a very good wife the way you watch out for him. I am so proud of you. It must be difficult to watch the one you love go through this. HUGS
  • AnneCan
    AnneCan Member Posts: 3,673 Member
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    Chriss
    Jack sounds like a great guy; helping with the chicken despite the cold sensitivity! Would those thin surgical gloves allow him to help without pain? It sounds like you two make a great team. I am not a pill taker either but I do take a sleeping pill; my onc wants to make sure I get a good sleep. I am glad Jack is through three treatments; good for him!
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
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    Quite a couple
    You two sound like a very devoted couple. I pray that healing will come, and this will one day be a distant memory.

    *hugs*
    Gail
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
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    Another Satisfied Customer:)
    LOL:)

    I'm glad the Mag is working for him to some degree - anything that can keep him in his cycles. Things sound good - keep an eye on the platelet level and his feelings of neuropathy.

    Just tell him that ol' Craig could only do 8 Tx of that Oxy - so if he can make that and not walk away with too many effects, that would be a good victory! Some people make it to 12 but many do not as well. So, around #8 to 10 really have your radar up and tell the onc everything.

    And remember your husband is still trying to absorb all of this new material and information and doctor appts - and he's lost control of his life and that's hard for anyone to deal with.

    Just point him my direction and show him some of my posts and say 6-years and he's still going - you can do it too:)

    Be good, Chriss

    -Craig
  • okthen
    okthen Member Posts: 232
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    Ahh thank you ladies, you
    Ahh thank you ladies, you are all so sweet!
    We are very happy together...and people said it wouldn't last..ha...they said I married him for his money and he for my body....what they didn't know is he had no money and I had a GREAT push up bra. (o: Thats what twenty years age difference gets ya...a lot of rumours. lol 16 years later we've spent all our money on Chemo and that awesome bra is loooong gone! (o;

    Lori he is getting the steroids, and I do notice a change in his energy, talkative-ness, etc. I wanted the Xanax for those days that he's not even on chemo and he'll start talking about being worried "the chemo is killing him...there's no way we can move while he's on chemo, he should stop chemo....the sadness that he feels like "half a man"...this whole thing is bull*hit...he felt fine...how do we know the lab looked at his biopsy and lymph nodes right...maybe it was someone elses "stuff" "....you git it...

    Don't want to make him sound like a lunatic, because he is far from that! But, the stress is really hurting his soul..I can see it in his eyes. *sniffle*

    I don't know if he'll ever take one...maybe me knowing it's there will help me not work myself up when he's worked up.... even though I would never...I know I could HYPOTHETICALLY slip it in his cereal. (o: JUST KIDDING!!!
  • okthen
    okthen Member Posts: 232
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    Sundanceh said:

    Another Satisfied Customer:)
    LOL:)

    I'm glad the Mag is working for him to some degree - anything that can keep him in his cycles. Things sound good - keep an eye on the platelet level and his feelings of neuropathy.

    Just tell him that ol' Craig could only do 8 Tx of that Oxy - so if he can make that and not walk away with too many effects, that would be a good victory! Some people make it to 12 but many do not as well. So, around #8 to 10 really have your radar up and tell the onc everything.

    And remember your husband is still trying to absorb all of this new material and information and doctor appts - and he's lost control of his life and that's hard for anyone to deal with.

    Just point him my direction and show him some of my posts and say 6-years and he's still going - you can do it too:)

    Be good, Chriss

    -Craig

    Yep Craig, he knows about
    Yep Craig, he knows about all of you here and it does help him feel like he's not alone (o:

    He always tells me to thank you all and to share his experience, he would love to be able to help someone else through a bad time too.

    Chriss
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    okthen said:

    Ahh thank you ladies, you
    Ahh thank you ladies, you are all so sweet!
    We are very happy together...and people said it wouldn't last..ha...they said I married him for his money and he for my body....what they didn't know is he had no money and I had a GREAT push up bra. (o: Thats what twenty years age difference gets ya...a lot of rumours. lol 16 years later we've spent all our money on Chemo and that awesome bra is loooong gone! (o;

    Lori he is getting the steroids, and I do notice a change in his energy, talkative-ness, etc. I wanted the Xanax for those days that he's not even on chemo and he'll start talking about being worried "the chemo is killing him...there's no way we can move while he's on chemo, he should stop chemo....the sadness that he feels like "half a man"...this whole thing is bull*hit...he felt fine...how do we know the lab looked at his biopsy and lymph nodes right...maybe it was someone elses "stuff" "....you git it...

    Don't want to make him sound like a lunatic, because he is far from that! But, the stress is really hurting his soul..I can see it in his eyes. *sniffle*

    I don't know if he'll ever take one...maybe me knowing it's there will help me not work myself up when he's worked up.... even though I would never...I know I could HYPOTHETICALLY slip it in his cereal. (o: JUST KIDDING!!!

    Chriss
    Dex is a pretty strong drug. It can cause depression and psychosis even. Maybe just talking to the onc about lowering it might even eliminate the need for some of the pills like Xanax and sleeping pills since he is so opposed to taking pills. Just a thought.

    I once had to take high dose steroids a long time ago and I got so depressed that they had to give me anti-depressants to keep me from jumping from the garage roof ... and it was only a one story structure. I'm exaggerating a little but, I got really depressed and I'm watching this time out to make sure that I decrease the dex before that happens ... just in case. I do also notice that I swell after dex ... under my eyes especially. Dex can cause weight gain for a lot of people. But, it's more water retention with me right now. The actual weight gain comes from the increased appetite with it.
  • herdizziness
    herdizziness Member Posts: 3,624 Member
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    Ramble On
    Ahh, Chriss, I understand his lack of wanting to take pills, I came home with loads of prescriptions, even filled them, the only one that I take is my blood pressure medicine, and I forget that one way too often.
    The Lorzepan, the pain pills the whatevers, I don't feel the need to take them, I've always had an aversion to taking pills, I don't even take aspirin, I deal with the headache rather then take a pill. Why this is, I couldn't tell you. I mean I KNOW if I take the aspirin the headache will go away, but for some reason, I don't want to take pills. It seems like a weakness to me perhaps? An idea that they aren't good for my body? Who the heck knows, I surely don't. So, I sympathize with you trying to get him to take the pills.
    As for feeling desperate at times, I get that, I so get that, I was like that a few months ago, for a few months, I'm calmer now, I'm not desperate anymore in my thoughts, it'll take awhile but I'm sure he'll calm down, it's the worry about family, what if we die any minute from this cancer, that sort of takes over our brains. Then eventually we realize that we need to get our brains in gear to beat this cancer and look forward to LIFE. It just takes time, an interminable amount of time I'm sure to you, but in time, he'll calm down.
    You ramble on hun, it helps you with your thoughts, and gives us a bit of help with our own thoughts.
    Prayers and a cyber hug or two to you as well.
    Winter Marie
  • okthen
    okthen Member Posts: 232
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    Lori-S said:

    Chriss
    Dex is a pretty strong drug. It can cause depression and psychosis even. Maybe just talking to the onc about lowering it might even eliminate the need for some of the pills like Xanax and sleeping pills since he is so opposed to taking pills. Just a thought.

    I once had to take high dose steroids a long time ago and I got so depressed that they had to give me anti-depressants to keep me from jumping from the garage roof ... and it was only a one story structure. I'm exaggerating a little but, I got really depressed and I'm watching this time out to make sure that I decrease the dex before that happens ... just in case. I do also notice that I swell after dex ... under my eyes especially. Dex can cause weight gain for a lot of people. But, it's more water retention with me right now. The actual weight gain comes from the increased appetite with it.

    Thanks for the info Lori...I
    Thanks for the info Lori...I will ask the doc about it for sure. I know this move is adding to his anxiety, it's going to be an interesting couple of months, any suggestions or thoughts are appreciated. (o:

    I have a funny story about Ambien...
    When Jack was in the hosp for his resection, they gave him Ambien. He was telling his nurse the next day that it was the best sleep he ever had. His nurse commented on the fact that you better be in the bed when you take it cuz it works so fast. I told her I had taken it and would walk into walls on the way to bed, so I agreed. My daughter said "so thats why you walk into walls?" I laughed and said "No, I was joking"...so she asks "..so why do you walk into walls then?" I thought the nurse was gonna die laughing and I wanted to crawl under the bed. Kids, you gotta write these things down so you have something to laugh about in the nursing home. (o:
  • okthen
    okthen Member Posts: 232
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    Ramble On
    Ahh, Chriss, I understand his lack of wanting to take pills, I came home with loads of prescriptions, even filled them, the only one that I take is my blood pressure medicine, and I forget that one way too often.
    The Lorzepan, the pain pills the whatevers, I don't feel the need to take them, I've always had an aversion to taking pills, I don't even take aspirin, I deal with the headache rather then take a pill. Why this is, I couldn't tell you. I mean I KNOW if I take the aspirin the headache will go away, but for some reason, I don't want to take pills. It seems like a weakness to me perhaps? An idea that they aren't good for my body? Who the heck knows, I surely don't. So, I sympathize with you trying to get him to take the pills.
    As for feeling desperate at times, I get that, I so get that, I was like that a few months ago, for a few months, I'm calmer now, I'm not desperate anymore in my thoughts, it'll take awhile but I'm sure he'll calm down, it's the worry about family, what if we die any minute from this cancer, that sort of takes over our brains. Then eventually we realize that we need to get our brains in gear to beat this cancer and look forward to LIFE. It just takes time, an interminable amount of time I'm sure to you, but in time, he'll calm down.
    You ramble on hun, it helps you with your thoughts, and gives us a bit of help with our own thoughts.
    Prayers and a cyber hug or two to you as well.
    Winter Marie

    Hey Marie, thank you for
    Hey Marie, thank you for your thoughts. It is so nice to have the help from those that are in the same boat as he is. You guys "get it" as you said, so what you all suggest or recommend is very important to me and I take it to heart, I really do. Thanks!

    I do want to clarify again that I will NOT put meds in his cereal. I promise! (o;

    I will put them in his medicine drawer, it will be his decision if he takes anything. I have a feeling I will be throwing them out by next summer because we will be moved, he will be done with treatment and CURED, and we will be skipping around the yard with rainbows over our heads. (thats for tootsie 1) (o: And I won't have it any other way. Damnit.
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
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    okthen said:

    Hey Marie, thank you for
    Hey Marie, thank you for your thoughts. It is so nice to have the help from those that are in the same boat as he is. You guys "get it" as you said, so what you all suggest or recommend is very important to me and I take it to heart, I really do. Thanks!

    I do want to clarify again that I will NOT put meds in his cereal. I promise! (o;

    I will put them in his medicine drawer, it will be his decision if he takes anything. I have a feeling I will be throwing them out by next summer because we will be moved, he will be done with treatment and CURED, and we will be skipping around the yard with rainbows over our heads. (thats for tootsie 1) (o: And I won't have it any other way. Damnit.

    Dexamethsone just relax DO YOU HAVE A DOG ?
    I blame the DEX for all my short comings now. Even though I only take 3 pills on my three chemo days each fortnight. I was like a lion with a thorn in my paw. I wished my wife or kids would have me on video. The simplest things got me worked up. I actually cringe looking back and also LAUGH alot at myself. On this board I have read the range of experiences of others on the FOLFOX roller coaster ride. I am aware of what maybe ahead for me and what affect it can have on wife and kids.

    I am trying to RELAX, its my main focus. At home, the traffic, at work. I am going to put a little band on my wrist, so I remember when I look at it RELAX. Being mindful of breathing in and out. I have got some great relaxation CD I play morning and night. Its surprising how much more relaxed I feel. I am looking to get into a yoga class. I walk my two lovelly dogs, give them a pat and a hug, chat to neighbours, see the sea and the trees. I am blessed to live by a stunning river near the sea. My goal is 5 x 30 minute walks a week. I should do more. I am going to get up 6am and visit the surf beach tomorrow and catchup with a good friend. The fresh air, peace, tranquility. Nice music, no TV, no RADIO. All to stressful for me. Even my dogs are helping me beat cancer. Never realised it before, they will get a real treat tomorrow.

    The CANCER has away of not just taking, but TAKING OVER our lives. I am trying not to play into its game. I believe if we get stressed, we weaken our immune system and ironically
    actually help our enemy.

    Given we all accept we have to through the FOLFOX treatment, the question is how we get through this together. Helping with diner reminded me of me. When my wife is out running our business and I am tired and struggling to cook diner at home for the kids. I am lucky the kids love tomatoes and baked beans and some simple foods. I think Jacks desire to help is much like my own. On treatment 2 I had to wear these horrible flouro pink gloves to get food out of the fridge. Its good to be busy and useful and productive. Its probably his way of loving you or maybe he was just hungry and realised you need to work to make money to buy food and more drugs and pay doctors bills.

    Helping is more beneficial in the long run than not helping. I guess as long as its not stressful for either of you. I'd like to share my last observation. I attended my first real life in person cancer support group meeting which was just yesterday. I met to spouse who loved her partner so much she worried herself into illness ( stress related diabetese she shared ). Look after yourself more than Jack, if your scared or stressed it shows and may rub off.

    Thanks for sharing your worries it actually helped me realise what my wife maybe experiencing as well. I will also be skipping around the yard with rainbows over our heads downunder when I finish this treatment or the next time I see a rainbow. Why wait ?
  • Lori-S
    Lori-S Member Posts: 1,277 Member
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    Dexamethsone just relax DO YOU HAVE A DOG ?
    I blame the DEX for all my short comings now. Even though I only take 3 pills on my three chemo days each fortnight. I was like a lion with a thorn in my paw. I wished my wife or kids would have me on video. The simplest things got me worked up. I actually cringe looking back and also LAUGH alot at myself. On this board I have read the range of experiences of others on the FOLFOX roller coaster ride. I am aware of what maybe ahead for me and what affect it can have on wife and kids.

    I am trying to RELAX, its my main focus. At home, the traffic, at work. I am going to put a little band on my wrist, so I remember when I look at it RELAX. Being mindful of breathing in and out. I have got some great relaxation CD I play morning and night. Its surprising how much more relaxed I feel. I am looking to get into a yoga class. I walk my two lovelly dogs, give them a pat and a hug, chat to neighbours, see the sea and the trees. I am blessed to live by a stunning river near the sea. My goal is 5 x 30 minute walks a week. I should do more. I am going to get up 6am and visit the surf beach tomorrow and catchup with a good friend. The fresh air, peace, tranquility. Nice music, no TV, no RADIO. All to stressful for me. Even my dogs are helping me beat cancer. Never realised it before, they will get a real treat tomorrow.

    The CANCER has away of not just taking, but TAKING OVER our lives. I am trying not to play into its game. I believe if we get stressed, we weaken our immune system and ironically
    actually help our enemy.

    Given we all accept we have to through the FOLFOX treatment, the question is how we get through this together. Helping with diner reminded me of me. When my wife is out running our business and I am tired and struggling to cook diner at home for the kids. I am lucky the kids love tomatoes and baked beans and some simple foods. I think Jacks desire to help is much like my own. On treatment 2 I had to wear these horrible flouro pink gloves to get food out of the fridge. Its good to be busy and useful and productive. Its probably his way of loving you or maybe he was just hungry and realised you need to work to make money to buy food and more drugs and pay doctors bills.

    Helping is more beneficial in the long run than not helping. I guess as long as its not stressful for either of you. I'd like to share my last observation. I attended my first real life in person cancer support group meeting which was just yesterday. I met to spouse who loved her partner so much she worried herself into illness ( stress related diabetese she shared ). Look after yourself more than Jack, if your scared or stressed it shows and may rub off.

    Thanks for sharing your worries it actually helped me realise what my wife maybe experiencing as well. I will also be skipping around the yard with rainbows over our heads downunder when I finish this treatment or the next time I see a rainbow. Why wait ?

    Hey Pete
    I post of my extreme adventurse in FOLFOX land just to give a little light touch to the experience while sharing what the most prominent side effects are for me. It's true ... RELAX is a very good idea. While the side effects after my 3rd round have not lessen what has happened is that I am adjusting. Adjusting my attitude and the way I do things. The treatments while giving me a lot of side effects are becoming more managable as I adjust to them. Of course, it is the Thursday before my next infusion and I have a little distance and am feeling much better. But the week of chemo I just shake my head and say, I can't believe I'm actually paying someone to do this to me! So, the distance from the chemo really helps a lot. I feel like I can take on chemo? No problem ... today. But, come Monday or Tuesday I'll be saying ... What the he!! was I thinking???

    I don't have anyone at home to gripe and complain or laugh and celebrate with so I am very thankful that I have everyone here to go through this experience with. This board and these great people help me keep my family from suffering through this because it gives me a place to express myself. Thanks semicolons!

    Best way to get through FOLFOX?? ... Just breathe and RELAX.