Treatment plan - need your wisdom

Kathleen808
Kathleen808 Member Posts: 2,342 Member
edited March 2014 in Colorectal Cancer #1
Hi everyone,
We have been waiting for Dr. Lenz and our Hawaii onc to talk. We sent the PET and CAT disks to USC and their radiologists read them. Dr. L advice is for **** to go back on Folfori + Avastin. He said that there was no growth in the lungs until **** went off this. Also, we saw shrinkage in the node (but it did spread in the nodes). **** is not happy with this. He thought he was going to get an easier chemo.
My question to you is, as a spouse how do I encourage him? He says this is a decision for both of us. He says he will be a different man if he goes on this chemo again. He feels he won't be able to help around the house and his spirit will just wither. I feel this is his decision. I will support him however I can. What do you want your spouses saying in these situations? I know he is thinking about our 16 year old who is a junior and our 14 year old who has special needs. Maybe if he sits on this for a few days he will get some clarity.
How did those of you who did loads and loads of chemo do it? He has had 12 rounds of Folfox and 18 rounds of Folfori + Avastin.

Thanks.

Aloha,
Kathleen
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Comments

  • Kerry S
    Kerry S Member Posts: 606 Member
    Kathleen Darlin


    Yep this must be a guy thing. I do the same with the scary old woman. She always lets me stew on it and then says “It is entirely up to you but I think you should go for it”.
    I think it gives me a way out of the dilemma if I want it while giving support for what I know I need to do.

    Works on me every damn time. See why she is scary.

    Kerry (old guy with the sneaky wife)
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    Kerry S said:

    Kathleen Darlin


    Yep this must be a guy thing. I do the same with the scary old woman. She always lets me stew on it and then says “It is entirely up to you but I think you should go for it”.
    I think it gives me a way out of the dilemma if I want it while giving support for what I know I need to do.

    Works on me every damn time. See why she is scary.

    Kerry (old guy with the sneaky wife)

    I agree with the ole coot 100%
    nuff said......also **** will do whatever gives him the optimum chance at longevity, human instinct and the need for survival will do that automatically. All you have to do is let him know that being different is only because of the treatment. His heart will always be the same and in the right place as well.......He has just had as you have a major jolt in this journey, give it time to set in, it will, then things will start getting accomplished through him.........Love to ya all four.......Clift
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Thank you
    Kerry and Clift,
    I love you guys! Really, I love how you can give perspective. Huge hugs to both of you.

    Aloha,
    Kathleen
  • KathiM
    KathiM Member Posts: 8,028 Member
    A female perspective....lol....
    I must agree with our two resident experts...lol!

    The only thing I might add is a variation of what the scary old lady says:

    "****, the final decision is yours. But, know this, whatever you decide, I will be by your side! And, at any time along the way you change your mind, that's ok, too...this is not a road without forks in it!!!"

    Make sure you keep the communication lines open along the way. Truly, there will be times (as happens with all of us), when he says "I give up, I don't want this anymore, I would rather die!"...know that that, too, is his choice...give him 25 hours (lol), my beau always did...

    Dutch hugs to a brave supporter! Kathi
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    My take
    I understand the dread of going back to chemo after being off.
    So I guess it comes down to this, if the doc's say if you do this chemo your tumors probably won't shrink and your going to die anyway, well, I wouldn't do it.
    If they said there was a good chance the tumors would shrink and I'd get to be around a lot longer for my family, and had a later chance of getting off of that particular chemo, well, I'd go for the chemo.
    Enjoy the short term and then be gone from this earth?
    Or do I endure more chemo so that I get the chance to be around a lot longer on this earth mentoring, holding and loving my children?
    He's used to being the strong man about the house, he doesn't want to see himself as weak again and "useless" from the chemo. I understand, we all do.
    He needs to take his time on this decision, a few days deciding won't hurt anything. Hold him, let him know you love him, and encourage him to find what's right for him.
    Your a strong woman Kathleen, much stronger then I, I do believe. Thinking of you and **** and your family during these difficult times.
    Winter Marie
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Kathi & Winter Marie
    Kathi and Winter Maire,
    I love the female wisdom too! Thank you so much for your insight. I really needed the perspective of the people going through this.

    Hugs and aloha,

    Kathleen
  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    What do you want your spouses saying in these situations?
    dear Kathleen,

    no easy questions today on the board. I pray my wife never has to ask a question like you.

    well I want my wife to say she loves me, that I am fantastic and absolutely the best husband in the world. then she says you do what your heart and head says.
    Its a big decision and maybe **** needs to think and talk it through.

    I know its only the positie stuff I sprout, and I have only being doing this dam treatment myself for 8 months so I am a real baby in terms the longterm perspective. Anyway if you guys commit on the advised chemo, I just hope its in as positive way as possible.

    Prayers and love,
    Pete
  • C Dixon
    C Dixon Member Posts: 201
    A few questions
    1. How was Folfox for him as far as the side effects?

    2. Was there surgery in between Folfox and Fofiri? I did read your profile AFTER I asked these questions so I see that Folfox didn't work.

    3. Why on Folfiri so long?

    4 Was he taken off of Folfiri because he was NED or needed a break.

    5. What is it that bothers him about Folfiri so much as far as side effects? I know everyone is different.

    Thanks,

    Catherine
  • lesvanb
    lesvanb Member Posts: 905
    a rock and a hard place
    Hi Kathleen

    Already these good folks have chimed in with their words of wisdom. The only thing I have to add is can he combine IV Vitamin C with the chemo? I know this is what I was facing before stereotactic radiation became an option. I know several folks have had good results with it minimizing the side effects and with shrinkage of tumors. It may have helped with the my lung mets responding so well and early to the recent radiation. You might try PMing luvinlife2 who is on this combination. She and I have talked a lot about it.

    Love to you all,
    Leslie
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    Dear Kathleen
    I have no personal experience either as a caregiver or with having chemo, but I do have a couple of thoughts I would like to share.

    Every person wants to feel that they are contibuting well to their family. It might help if you and he can come up with things he would be able to help with. A change of 'duties' is not such a bad thing. I don't know what side effects he had before, but am sure that between the two of you, you will be able to come up with things that contribute to help him feel good about himself.

    It may be that going back on this chemo is a short term thing. Perhaps this time it will work well and there will be other options in the future for getting off it.

    The best you can do is talk with him about his fears and concerns. Help him to find alternate solutions if any are to be had. And above all, let him know that you love him and support his decision, whatever that may be.

    Hugs to you both.

    Marie who loves kitties
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    My Perspective.......
    Kathleen

    I just swallowed another chemo round yesterday, so I'm about to get really sick for the next 8-9 days, so I wanted to respond to you know while I had some clarity.

    Kim has always left it up to me as to what to do. Anytime I've ever hinted that I had enough, she tells me stuff like, "if you want to give up, just go ahead and die" etc.etc.

    I've come to realize over time, that this is her way of dealing with my cancer and her associated fears that I will no longer be with her. She turns her apprehendions outwards - it used to hurt me but now I think that is what she must do to deal with it.

    I remember 7-months ago as we got word of my 3rd recurrence, she had a meltdown in the car on the ride home. Because she knew all of the roads we would have to take, how there would be many days and night where I could not be there for her - how I could not help her out more - or go to the store, and somedays to even be able to sit up and write the bills. She knew she was in for the long ride too - and I knew she was upset.

    In the next breath, she began crying hard and told me, "I'm so sorry that you are having to go through this again." I told her it would ok and that I was strong enough to get through it.

    As far as a mutual decision, that's a tough one. I think ultimately **** needs to be the one who decides how long and hard that he fights. One would not want to tell their spouse to stop, unless the other party felt the same way.

    I think as long as there is Hope and Quality of Life, that **** will probably wage on with his fight. He might do like I'm doing one - fight this thing one more time really hard and then re-evaluate everything when the treatment wraps and the scans come back.

    It's always hard to know when ENOUGH is ENOUGH! I say this as an active cancer fighter, that is 6.6 years into his fight, with 5 major surgeries, 3 different radiation treatments and three times doing chemotherapy and still doing infusions every 2 weeks.

    I think as long as there a chance at Life, and there is still some quality that makes the fight worth living, when the fighting stops, that is good to keep going as long as you can.

    You've already gone so far now, it would be a shame to give it all back now at this stage.

    I help Kim on any good days that I get and when I'm sick, she picks up the slack and works and has the house to run. So, I know what's running through ****'s head about now.

    My feeling from the both of you is that you will continue - you'll take the 6-months worth of setback and somehow handle the associated sickness anda side effects.

    And I hope to hear shortly, that things have moved back to a positive position.

    Aloha
    -Craig
  • idlehunters
    idlehunters Member Posts: 1,787 Member
    Sundanceh said:

    My Perspective.......
    Kathleen

    I just swallowed another chemo round yesterday, so I'm about to get really sick for the next 8-9 days, so I wanted to respond to you know while I had some clarity.

    Kim has always left it up to me as to what to do. Anytime I've ever hinted that I had enough, she tells me stuff like, "if you want to give up, just go ahead and die" etc.etc.

    I've come to realize over time, that this is her way of dealing with my cancer and her associated fears that I will no longer be with her. She turns her apprehendions outwards - it used to hurt me but now I think that is what she must do to deal with it.

    I remember 7-months ago as we got word of my 3rd recurrence, she had a meltdown in the car on the ride home. Because she knew all of the roads we would have to take, how there would be many days and night where I could not be there for her - how I could not help her out more - or go to the store, and somedays to even be able to sit up and write the bills. She knew she was in for the long ride too - and I knew she was upset.

    In the next breath, she began crying hard and told me, "I'm so sorry that you are having to go through this again." I told her it would ok and that I was strong enough to get through it.

    As far as a mutual decision, that's a tough one. I think ultimately **** needs to be the one who decides how long and hard that he fights. One would not want to tell their spouse to stop, unless the other party felt the same way.

    I think as long as there is Hope and Quality of Life, that **** will probably wage on with his fight. He might do like I'm doing one - fight this thing one more time really hard and then re-evaluate everything when the treatment wraps and the scans come back.

    It's always hard to know when ENOUGH is ENOUGH! I say this as an active cancer fighter, that is 6.6 years into his fight, with 5 major surgeries, 3 different radiation treatments and three times doing chemotherapy and still doing infusions every 2 weeks.

    I think as long as there a chance at Life, and there is still some quality that makes the fight worth living, when the fighting stops, that is good to keep going as long as you can.

    You've already gone so far now, it would be a shame to give it all back now at this stage.

    I help Kim on any good days that I get and when I'm sick, she picks up the slack and works and has the house to run. So, I know what's running through ****'s head about now.

    My feeling from the both of you is that you will continue - you'll take the 6-months worth of setback and somehow handle the associated sickness anda side effects.

    And I hope to hear shortly, that things have moved back to a positive position.

    Aloha
    -Craig

    Hey Kathleen
    The semi's have given some good words here. I have nothing more to offer but I will be sending good vibes and prayers that you both find the decision that works the best for you.
    We all love you guys sooo much. Take care.

    Jennie
  • ktlcs
    ktlcs Member Posts: 358

    Hey Kathleen
    The semi's have given some good words here. I have nothing more to offer but I will be sending good vibes and prayers that you both find the decision that works the best for you.
    We all love you guys sooo much. Take care.

    Jennie

    Kathleen
    The best thing you can do is to support him in whatever decision he makes. I know it can sometimes be very painful, but I supported my husband in his decision not to have the surgery knowing without it his prognosis was very poor. It was what he wanted and I just wanted to be there for him.

    Kathy
  • mom_2_3
    mom_2_3 Member Posts: 953 Member
    Kathleen
    You have already received very sound advice from the others here. I don't have really too much to add. I have thought about the lengths I would go to in order to be on this earth with my family and the answer is that I would do anything. I feel there is value to me and to my family for every day that I could be with them. I know that my husband would tell me I had no choice in the matter so I guess that is why we are compatible. I will pray that **** finds the answer best for him and your family

    Amy
  • Crow71
    Crow71 Member Posts: 679 Member
    Lots of wisdom in you
    You said something about letting **** sit on this for a few days. I think he knows what he needs to do.

    I think 12 rounds folfox and 18 rounds Folfori DOES sound like loads and loads.

    Roger
  • Erinb
    Erinb Member Posts: 293
    Crow71 said:

    Lots of wisdom in you
    You said something about letting **** sit on this for a few days. I think he knows what he needs to do.

    I think 12 rounds folfox and 18 rounds Folfori DOES sound like loads and loads.

    Roger

    Kathleen,
    I haven't been

    Kathleen,
    I haven't been through chemo myself, but Erbitux with irinotecan & Avastin seemed easier for Chris compared to FOLFIRI. My husband might be on chemo indefinitely and still functions fine and works a lot. I try to help out by not asking him to help with anything around the house and I do as much as I can so he doesn't feel the need. Shoveling, mowing, the housework before he gets home :} I love my husband so much & love to help him as much as I can.

    We don't talk about cancer very often at all. We just live it. No deep discussions about what we are going to do; he just knows he will be fine.

    Erin
  • luvmylife
    luvmylife Member Posts: 76
    Hi Everyone!
    Kathleen,

    Everyones advice here is so great and on the mark. I am also a caregiver to my husband, Jimmy, but I am also a control freak so at this point and where **** is in his treatment, I don't think I would let him stop the chemo if the oncologist thinks it will stablize the disease. I know, it is Dicks choice but I think I would encourage him to give the chemo another shot.

    Praying for guidance for you and your husband.

    Jan
  • lisa42
    lisa42 Member Posts: 3,625 Member
    "loads and loads of chemo"
    Hi Kathleen,

    I'm wondering, now that it's been a couple of days since you first posted this, if **** has come out now feeling like he's going to go along with the Folfiri/Avastin Dr. Lenz recommended. Has **** ever consulted with a naturpath doc? If not, maybe that would be something for him to consider this time, to do along w/ the chemo. It could help support his body and make him stronger and feel better going through it all.

    I would definitely urge him to do something- doing nothing would be like giving up. Yes, a recurrence and dealing with having to do chemo again is no walk in the park- I know firsthand, having had two recurrences and now being on nonstop chemo for the past 2-1/2 yrs (other than a month break and a recent 2 wk break).

    Praying for you and ****, Kathleen-
    Hugs,
    Lisa
  • NeverLoseHope
    NeverLoseHope Member Posts: 1
    Kathleen,
    You've received

    Kathleen,

    You've received lots of great advice, your husband's words are very similar to my husband's during his most recent round of chemo. He's been on therapy for almost 4 years now and understandably tired. He's always been a very busy person, working through all of his treatments. This last reoccurance really hit him hard, he has had to stop working and the treatments have made him much more fatigued. I've always told him that I will support any decision he makes but that every decision is his to make. I can see what he goes through but I can't imagine what it's like for him to go through it. My words of advice for you is to be there for him as you are, let him know that you're there for him no matter what and that you love him. Most importantly NEVER LOSE HOPE...we've had many ups and downs, we've had prognosis' of weeks/months from early on to recently but my husband's been able to overcome each time so far, God willing this will continue to be the case. May God bless you both and your children, may he give you all the strength you need to get you through any challanges that are brought your way.
  • Kathleen,
    You've received

    Kathleen,

    You've received lots of great advice, your husband's words are very similar to my husband's during his most recent round of chemo. He's been on therapy for almost 4 years now and understandably tired. He's always been a very busy person, working through all of his treatments. This last reoccurance really hit him hard, he has had to stop working and the treatments have made him much more fatigued. I've always told him that I will support any decision he makes but that every decision is his to make. I can see what he goes through but I can't imagine what it's like for him to go through it. My words of advice for you is to be there for him as you are, let him know that you're there for him no matter what and that you love him. Most importantly NEVER LOSE HOPE...we've had many ups and downs, we've had prognosis' of weeks/months from early on to recently but my husband's been able to overcome each time so far, God willing this will continue to be the case. May God bless you both and your children, may he give you all the strength you need to get you through any challanges that are brought your way.

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