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Treatment plan - need your wisdom

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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 Dick to go back on Folfori + Avastin. He said that there was no growth in the lungs until Dick went off this. Also, we saw shrinkage in the node (but it did spread in the nodes). Dick 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

Kerry S's picture
Kerry S
Posts: 607
Joined: Dec 2009

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's picture
Buzzard
Posts: 3073
Joined: Aug 2008

nuff said......also Dick 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's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Kerry and Clift,
I love you guys! Really, I love how you can give perspective. Huge hugs to both of you.

Aloha,
Kathleen

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

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:

"Dick, 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's picture
herdizziness
Posts: 3642
Joined: Apr 2010

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 Dick and your family during these difficult times.
Winter Marie

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

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's picture
pete43lost_at_sea
Posts: 3908
Joined: Nov 2010

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 dick 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
Posts: 202
Joined: Jan 2010

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's picture
lesvanb
Posts: 911
Joined: May 2008

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's picture
Lovekitties
Posts: 3372
Joined: Jan 2010

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's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

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 Dick 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 Dick 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 Dick'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's picture
idlehunters
Posts: 1792
Joined: Apr 2009

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's picture
ktlcs
Posts: 360
Joined: Jan 2010

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
Posts: 965
Joined: Nov 2008

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 Dick finds the answer best for him and your family

Amy

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

You said something about letting Dick 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
Posts: 295
Joined: Apr 2010

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's picture
luvmylife
Posts: 80
Joined: Jun 2010

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 Dick 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's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hi Kathleen,

I'm wondering, now that it's been a couple of days since you first posted this, if Dick has come out now feeling like he's going to go along with the Folfiri/Avastin Dr. Lenz recommended. Has Dick 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 Dick, Kathleen-
Hugs,
Lisa

NeverLoseHope
Posts: 1
Joined: Apr 2007

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.

Anonymous user (not verified)

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CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

Hey Kathleen.... sorry I'm chiming in so late. Wading through the topics has become such a chore when one is on limited online time .... but I eventually get to the worthy topics.

I think what the guys (and gals) have told you throughout is marvelous and there's not too much more I could add to it in the way of advice on what to do or what to ask, when to hold back, etc. etc.

But, what I can remind you of, because throughout everything you both have had to be facing... Dick's cancer treatments, the scare when it acts up again, your daughters special needs requirements and you other daughter just being a Sweet 16 teen.... I have to ask, "HOW the heck do you juggle all of it???" Forget what are you doing right and/or what should you be doing differently... both of you are doing exactly the right thing and working through it as a family. Like everything else, there are ups, there are downs, there are good times, there are not so good times, but never once did any of the down times make you say, "I think I'm going to leave". No, because you both adore each other, always have and always will. Period.

Dick knows that and if anything, because these treatments can be round on a person, he probably just needs reassurance that even though his life has turned upside down and back again and now is about to turn upside down again... are you all as a family going to remain the same and is he still going to be able to be part of that family? You just remind him that you started this journey with him back when you said "I do", before you even knew what journey that "I do" was going to take you on. But you are on the ride with him because you adore him and you would never pick anyone else to go on any other kind of adventure with.... you two are a team. Assure him that if he can do some of the things he could do pre chemo, then great, and if not, then the two of you will work out together what kind of help you can ask for from friends and family and Dick can supervise the help. There are all kinds of ways of getting around a problem... but they only are successful if Dick knows you are his team mate no matter what sorts of things have to change... temporarily while he's on treatment :)

Huggggggggs!

Cheryl

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Cheryl,
I just love you! Thank you for lifting me up. You have a wonderful way with words and I am so happy when you share them with me.
Sending you all the Hawaii love.

Aloha,
kathleen

CherylHutch's picture
CherylHutch
Posts: 1399
Joined: Apr 2007

I just love you too.... have ever since you and Dick first came on board :) There's this phenomena about online "boards". Long before the internet became mainstream and everyone has a computer and access to it.... there were these online services called "proprietary services"... like GEnie, Compuserve, Prodigy and yes, the beginnings of AOL. You could join any one of these services and there was a monthly fee to belong (as well as charges if you came on during prime time during the day hours). All of these services were "text based", like this board where all our communication is done by typing. Actually, this board has a bit higher tech features than those services because we can put up pictures, or add audio/video clips to our Expressions pages. But for the most part, the communication is done by leaving text messages on a public board for anyone who is a member can see, read and respond to. These proprietary services also had private messaging (which back in the day we called email) and you could send a private message to ANYONE within that proprietary service. But you could not send messages to someone on one of the other services (IE: Someone on GEnie could not send to someone on Compuserve), So these services were like separate planets. Of course everyone thought the service they were on was the BEST and had the BEST people on it and were quite condescending to the other services.

Then, as it was bound to happen, these services started shutting down or cutting back on development because the internet was not a lot more savvy looking. Although people were only used to text-based communications they were quickly picking up on other features like images, video, audio, etc., so the internet was like a galaxy! All these little planets of proprietary services could branch out their wings and join the internet and do all sorts of things they couldn't do before.

But here we are on CSN... still depending on the good old basics of communicating by text. And I still am just as fascinated by meeting people this way as I was back in the mid-80s meeting people on GEnie. The novelty has never worn off for me and I've been involved with online communications for 26 years now. When someone first comes on board, I can tell right away that they may be nice and we can maintain a fun and healthy online friendship. There are others who are like leopards... I know right away they are not my cuppa tea ... and no matter how many disguises they put on, they just can't change their spots. And then there are the absolute gems! From the minute they leave their first post saying "Hi. I'm new here. This is my story", I get this visceral (is that a word??) connection where I feel like I should have known them all my life and no matter where in the world they live, if I were to move to that part of the world and met them in person, we would be BFF friends for life. I have met a lot (and I mean a LOT) of wonderful, caring, supportive friends on this board... and what keeps me coming back (besides these wonderful friend) are the handful of gems of friends I have met here too. Now I'm not going to mention who they are... I think they know since they will have had the same feeling... but you, my friend, are one of those people I'm so happy to call one of those gems!! And I bet if we were to poll everyone here (no, I won't do that to embarrass you), I think you'd find the majority of people who have been on these boards for any length of time will totally agree with me that you are a gem.

So let's raise a cuppa tea (or whatever you are drinking right now) to Friendships and Gems of Friends :) :)

:::: getting off box with a thud :::

Now, I really must go and get a load of laundry started. Unless one of you would like to come over and do my laundry for me? In that case, I have 3 loads of laundry to do :D

Kathleen808's picture
Kathleen808
Posts: 2361
Joined: Jan 2009

Cheryl,
You have put a huge smile on my face. Yes, anyone walking by right now can look in my picture window and wonder why as I stand here in my pj's at 11:54 in the morning I have a huge smile on my face..... it is because of YOU! Thank you so much.

I loved reading about the internet and the 1980's. We didn't have a clue until about 1995. Yep, we were a bit behind the times. I must say that I know Dick and I would be in a very different place without this board. You all got me through that first surgery in January 2009 when I was sitting in the waiting room and so dam* scared.

I am going to sit down right now, get a cup of tea and say my thanks for you and others on this board who have become like a lifeline to us.

Aloha,
Kathleen

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