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Am I Doing The Right Thing?

mojogirl67's picture
mojogirl67
Posts: 256
Joined: Oct 2018

I am still in such deep thought at times about this mop-up chemo. I am not quite 8 weeks out from my liver and colon resection. I am scheduled to start the first of 7 Folfox cycles left in my treatment on Tuesday. I keep telling myself "you got this", but there are times, I'm not so sure. When the path came back on the tumor tissue they removed, it said that the colon tumor had responded well to Folfox but the liver tumors had not. During surgery, they took 19 lymph nodes around the colon and tumor which were all negative. The liver tumors had changed very little over treatment although I will say that the right flank pain I had where the liver is located disappeared soon after starting chemo. My insides now are still not feeling normal but I do feel much better. I still have a lot of tenderness in my lower right back and abdomen in places. It feels like a lot of tightness and pulling at times. I still can't help but wonder what the purpose will be to put chemo back into a healing body with tender and compromised tissues not fully healed. Ican understand "killing floating cancer cells". If the chemo did very little the first time for my liver tumors, what good will it do now? If the colon tumor was nuked with the chemo and 19 lymph nodes were negative, isn't it overkill to put more chemo back on new and developing tissue? I asked my onc about it and she said the reason she would do the Folfox is because of the size of the liver tumors I had. She said she thought the poor response to chemo initially was because the tumors were already so large. She thinks the additional mop-up chemo would kill anything floating in the liver as well before it can start. I'm not sure how I feel about any of it and really don't think I can get in a good place about it. Of course, I'm scared to death of not doing everything and anything I can to keep this at bay with being at stage IV. It is just so frustrating to me that you will find equal amounts of studies that support mop-up chemo as you will find studies that say mop-up chemo gives very little advantage. I am just starting to get an appetite and feel half-way like myself so I suppose the the fear of how the chemo makes me feel after disconnect day is weighing heavily on my mind. I HATE the thought of doing it again but at this point, I will move forward with the plan.  Wishing everybody here good things for their day!! Hugs, M

 

 

myAZmountain
Posts: 279
Joined: Apr 2018

I hear you. It seems counterintuitive to destroy one's immune system when it is needed to combat the cancer. Is it possible to wait a few months and get another CT scan to see where you are? Or get another opinion?I don't know much about HIPEC but it seems people have had good results with it for liver mets. It is such a hard decision--

mojogirl67's picture
mojogirl67
Posts: 256
Joined: Oct 2018

I guess I will give at least one treatment a shot on Tuesday and go from there. NOTHING about this disease makes sense. I guess I can always stop if I change my mind. Hugs, M

SandiaBuddy's picture
SandiaBuddy
Posts: 912
Joined: Apr 2017

It must be a difficult decision.  I recall that you had decided to give the mop-up chemo a try, so why not go a round or two and see how you feel?  You can always reconsider and quit.  But sometimes intuition is the best guide.  If I had it to do over, I would not have had the chemo, but I am stage 3, so it is a different ball game.  Best of luck with these tough decisions.

mojogirl67's picture
mojogirl67
Posts: 256
Joined: Oct 2018

You are right. I can quit if I just can't handle it at any point. I guess being stage IV comes into play for me as well so I will give the mop-up a shot. Thanks for the advice...hugs, M

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

In my opinion, go for it. It should stop any spread even if it doesn't do much for the existing tumours. If yo do it and it doesn't spread you'll be glad you did. But if you don't and it does you'll wish you had. And it's supposed to be done within a certain number of days so you can't really puch it off or the chances of success go down. Also, our immune system does not fight cancer unless we're on an immunotherapy chemo. The body does not recognise it as a problem so it does nothing. Having a good immune system makes you stronger otherwise but it will not affect the tumours or cancer cells.

Jan

Trubrit's picture
Trubrit
Posts: 4898
Joined: Jan 2013

When I had my liver ablation, my Oncologist was on the fence about mop-up chemo, so he took it upon himself to call another Oncolgist freind who works in San Fran. and they talked over the situation. This was even before I had my post op appointment with him.  They decided together that, because of the stage I was at, at the time - which is a better stage than you are at, I have to say - that they would take the watch and wait road.  Now I am about to celebrate five years NED from that liver surgery. 

What I am trying to say is, why not seek a second opinion, even if you are 100% confident in your Onc.   

Ah, such a hard, hard decisoin to make.  Nodoby wants to look back with regret, and that is what would happen if you choose not to do the mop-up at this time.  

I know you came here as a sounding board, and I know you know that we know that you know........  OK, you know that you are the only one who, at the end of the day that can say, yay or nay. 

Until then, you are in my thoughts and prayers.  Wish I could give you a hug. 

Tru

Kazenmax's picture
Kazenmax
Posts: 363
Joined: Feb 2016

The thing is... you can’t second guess yourself. I’m not a doctor and I can’t begin to try and figure  what the best option is. However once I commit to something, I’m all in. when I had to make the decision, I felt better after a second opinion that agreed with the first doctor. I went with that and followed the good advice i received here.... don’t search the internet for options. LOL. My surgeon said that for every 10 doctors that said to do one thing, he could find another 10 who disagree.

i know how hard it is to think about doing chemo and feeling bad. I hope whatever decision you make, you feel better.

sending love and strength

k

Msboop15's picture
Msboop15
Posts: 81
Joined: Apr 2019

 Mojo, I read your posts with such interest. It sounds like we’re a lot alike.  You are further along in your treatment than I am...I have had a colon resection and will most likely end up with a liver resection this summer.   I can’t really offer you any advice and or input but I just so totally understand where you are with your questioning. I’m glad you put it out there...It helps me so much to know that I’m not alone in the questioning, and to be reminded that we all have to make our own individual decision. We can always start on a path and then change our mind... Thank you for being there! And good luck next week.

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

No one ever can tell you wether you are doing the right thing or not, but you have to be accepting of whatever decision you made that you are going to be ok with it.  It's a hard decision to make either way, but with you talking to your doctor you already have another opinion you can go by, especially if you trust this doctor.  Wishing you the best going forward with the treatment.  Most of us can get through it, some can't, but you can always quit if you find it too hard on you.  We have your back no matter which way you go.

Kim

Nazareth
Posts: 88
Joined: Nov 2017

mojo- i didn't want to go throug mop up either- especially after such a hard time o nthe first round- and i almost didn't however, someone convinced me that this is a fight for life- and we have to give it our very best effort and do everythign necessary IF possible to fight it- IF we can handle it- I didn't want to not get it and then be sorry should cancer coem back, knowing i might have prevented it if only i had doen hte mop up- and figured even if i do get cancer again, I at the very least did everythign in my ability to try to prevent it- The mop up was terrible- got very very sick, but stuck with it almost to the end- had to quit a few treatments early because of side effects- and i thought i was never gonna feel better again, but as the m onths rolled on, i felt better and better=- The old sayign is true "This too shall pass"- it stinks goign through it, but pretty soon, sooner than we think, we'll be at a poitn looking back and saying "I made it!" and be stronger for it

The % of help from mop up for my case was only around 8-12%, but liek i said- i wanted to be able to later look back and say "I gave it my all, did everythign possible to try to prevent recurrence" And be at peace abotu at least tryign to do everythign possible no matter whether recuirrence happen ed again or not.

Another decidign factor for me was knowing that "The Future Aint what it used to be"- meaning that they are coming very close to cures for cancer- Israel has one in clinical trials right now- that looks very promissing- I want to hopefulyl be aroudn when they do find a cure- and was willing ot do everythign possible to try to be-

I wish you well with your decision- and peace no matter what you decide-

ellend
Posts: 84
Joined: Apr 2016

While it is useful to ask for advice, experiences, etc, this is truly a decision you have to make for yourself. Everyone reacts differently to chemo. I didn't have a tough time with mop up chemo all things considered. Others have had a much more difficult time. They did cut back on one of the components of Folfox because my platelet count was getting really low and I still have some minor neuropathy issues in my feet two years later.

I was struggling with the decision of whether or not to go ahead, especially since I was diagnosed Stage II, clean margins and all of the lymph nodes they removed were clean. I decided to go ahead because it does reduce the chance of recurrence and I would always be wondering if I made the right choice.

It sounds like you are going to give it a shot. i hope you sail through the treatments without any serious issues.

Ellen

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

I am going through FOLFORI now.  12 Rounds so far and probably will never get off it.  It stinks for 3 days.  Then kind of stinks the next few days with being tired and napping after disonnect.  I got disconnected yesterday and did a 3.5 mile run today to keep my lungs and cardio as strong as possible.  Otherwise mostly sleeping.  Then things get better.  And I have 3 bad days, 2 so-so days, 2 okay days and 7 pretty good days every two weeks.  I had cancer in 11 lymph nodes on my surgery with suspect spots everywhere.  To me there was no choice initially other than to try.  And when it came back, I am doing everything I can because my quality of life is still acceptable.  And I keep on hoping for the next trial drug or breakthrough.  There may be a point where I will stop - if I had continured to have the reaction I had to the first treatment before they changed the dosage I would have stopped if that was the norm for me - but for now will keep on going through with this.

My only advice is try to forget the down part of the treatment as quick as possible during each cycle.  I am pretty good at putting into a bad memory every two weeks even though I hate it as I go through it.  Sometimes the memory of how bad I feel during the 3 days hits during the good days, but I shake it off as quickly as I can, because it really is not fun.  

 

abita's picture
abita
Posts: 658
Joined: Dec 2017

You are able to do cardio the day after you get disconnected from the 5fu pump? Is there a secret to that? I have had a out a total of maybe 25 or so infusions of folfox and folfiri in the past year and a half. I am on a break waiting to have my new patient appt at MSK. I am hoping that in the next 4 weeks, I can somehow get my stamina back up and my sleep pattern in control so I get enough sleep so that I can still exercise while on whatever my new treatment is. Oh, I am also hoping to get time in on the chin up assist/tricep dip enough to keep my muscles strong. Any tips are appreciated. I should point out that I kind of still am pretty fatigued still. 

NewHere's picture
NewHere
Posts: 1117
Joined: Feb 2015

I am not sure if I have a secret.   When my cancer came back I started exercising a lot.  Focusing on cardio.  Went into immunotherapy trial because cancer had not spread/inpinged on insides enough to get to the point to "back on chemo now."   So I was able to get abut 10 months in of 5-6 days a week of heavy cardio before I got the "time's up, you gotta go back on chemo now."

To be clear, it is not easy.  I am not just popping up and running.  It depends.  But I am trying everything I can.  One thing I do is to make sure to get cardio in the day of my infusion.  Sometimes if my appointment is too early in the morning, I may not swing it.  But most of the time I can.  Usually a run outside (if weather is okay) or on treadmill.   Then I try to walk on treadmill the two hook-up days (including disconnect day).  This cycle, however, was one of these cycles where it was not happening.  Just could not it.  This rtime the first was day after disconnect.  There are many times I exercise after getting disconnect.  

Yesterday I had slept a lot.  (Sleep patterns have been missing since my initial diagnosis 4 years ago, just about, and the whole chemo thing makes it worse.  Day into night and all the rest we go through. )  And sat on the couch for awhile to get psyched up enough to try.  Then the actual run is tough to do.  Partially from the physical aspect, but I get slow for a week which is always disappointing.  I am not fast by any stretch of the imagination, but I had made progress.  But I get 2-3 minutes a mile slower for a week or so and it is a ton tougher.  Plays with my head.

I guess what it is, if there is a secret at all, is just repeating to myself that I have to get up and exercise (I hate running.  Or at least I did until all this. LOL.)  That is helping keeping me alive, or more specifically quality of life as I go through treatment and wait for something to come down the line.  With the amount of cancer I have in my lungs and elsewhere I should be a wreck on the couch on 02.  The toughest part is the first step to get going.  I purchased a treadmill after a couple of months on the chemo this time.  On bad days I use that since I figure if I really bottom out, I can just sit down, as compared to being out somewhere running or biking.    I am kind of tired as I right this even though I had about 10 hours sleep last night.  Been up since about 9AM thinking I am going for a run.  Getting close to be able to put on the shoes and go as compared to giving in to sitting on the couch and watch baseball and basketball.  Like I said, not easy.  But very well worth it.  

I do need to get to some weights in.  My muscle tone has taken a hit in my upper body.  Stopped going to gym when FOLFORI started and got hit on white blood cells, though I have had good enough blood work now that it is more just remnants of my really bad first couple of months on FOLFORI and how it played with my mind.  

Anyway, hope that helps.  If you have questions, please let me know.  During coming out of chemo days I know my writing sometimes slips a bit and may not be as clear as I want.  (BTW I am a MSK patient).

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