Am I Doing The Right Thing?

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.

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

 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.

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-

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.  

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).