mad as hell

khl8 said:

Oh Boy you have been
Oh Boy you have been throught alot. The decision to stop chemo is a personal one and only you can decide what to do. However, I will put my 2 cents in. YOu are angry that you may not be there for the birth, but in the long term picture, if chemo helps you to be there for the birthdays in the future, kindergarten, all that your grandchild will experience, won't that be worth missing a birth? Please think long and Hard about it! Please

Lori-S said:

LOU!
So good to see a post from you. It's been a while and I was wondering how you were doing.

I'm so sorry that they screwed up on your WBCs. That really sux.

Maybe just go ahead and finish the 8 original rounds? Definitely take John's advice and look into some alternatives, especially if you decide to quit early. I'd start them now before you might quit chemo and just check with the onc on anything you take just to be sure that everything is copesetic.

I'm so sorry you are having these problems. I know how hard it was for you and your wife to go ahead and agree to chemo in the first place. I hate that you have to go in everyday for those shots and I hope it gets better soon. HUGS to my FOLFOX club buddy.

CherylHutch said:

CBC
Hey Lou,

I'm just trying to piece some of this together and I'm not exactly sure here who you are or aren't trusting. Obviously the onc nurse "trainee" blew it, so not only can trainees not be trusted but where was her "supervising" onc nurse? Ok, so maybe, since you have had a few problems with the nursing, then the onc nursing dept. is not to be trusted. But with your actual oncologist, I think I've missed what he did that you have lost your trust in him? By all means, if you have no more trust in this particular Cancer Centre, and there is another one opening up... then I would give it a try. For sure. But you mentioned that might not be an option because of your insurance. Ok, being a Canadian, I am not even going to get into that discussion (I always get myself into trouble when I do ).

But... let me throw a few other things at you, just for food for thought. I know you were angry (and have every right to still be angry) and of course there are no words to describe the disappointment of your cancer interfering with the birth of your grandchild, especially when, as you say, your daughter's husband can't be there because he's in the military, and you want to be there to help your daughter out with the care of both grandchildren while your daughter recouperates from the birth.

1) the 8 cycles vs the 12 of FolFox. Interesting... I'm thinking this is a universal thing. My oncologist (who I adore and trust totally and she has yet to give me any reason not to trust her), when I was on chemo for the first time after my surgery, told me that we would start with 8 cycles of FolFox. Now, the ideal protocol of FolFox is actually 12 cycles, but there are so many factors... is your system tolerating it? How are you doing with that nasty Oxyliplatin that is part of it... that gives the neuropathy, sensitivity to cold, etc? Do you have any nodules/tumours that the FolFox is fighting or is this just for preventing any potential cancer from developing after the surgery? So many questions... and the answers or combination of answers would determine whether to stop at 8 cycles and possibly change to something else, or go ahead with the full 12, or do 12 and cut out the Oxy at some point. With me, she said we would start with 8 cycles and since I was tolerating it very well, she said we were going to go for the full 12. By around the 8th/9th cycle, I really was having issues with the Oxy... so after the 9th, we cut out the Oxy and just did the 5FU/Leucorviun for the 10th - 12th.

Now why I mention all of the above... it's quite possible that the oncologist was planning all along to give you the full benefit of 12 cycles IF, as time went on, you were tolerating it quite well. Keep in mind that once you have used a chemo such as FolFox and then you stop using it... it's quite possible that down the road if you need chemo again, you won't be able to use it because your system is used to it. So as long as your system is tolerating it, chances are they will want to give you the full 12 cycles which gives you that much more of a chance of fighting off any new growths from forming.

Again... using my case... I did the full 12 (minus the Oxy for the final 3) and then, lucky me, the nodules in my lungs were very indolent (lazy) and not growing. So I went chemo-free for 2 1/2 years... just started up again this past June when a couple of the nodules decided to start growing. My onc felt I had been off chemo long enough that maybe it would respond to the 5FU... so she put me on the pill form (Xeloda). Sigh. The cancer responded to it great for 3 months, then stopped This was not totally unexpected and my nodules/tumours did shrink 33% in that first three months, so I am ahead of where we were in June, but still... the Xeloda is not now an option for me. So I will be starting a new (to me) chemo in Feb.

So what I'm trying to get across here is... I don't think your oncologist is basing his decisions on one screwed up onc nurse trainee mistake, and of course, what chemo and how much has nothing to do with poor nursing/bedside manner/skills. So don't base quitting chemo on the two nursing errors... and don't think that you are going to 12 cycles because of an extra week or two off. That is really not going to make much difference in the long term plans.

2) Birth - totally, totally understandable that you and your wife both want to be there for this wonderful event. And like any parents, you want to be there to help your daughter when she gets out of the hospital until she's back up on her feet. No one is thinking you are being silly to want to be there for the event and to help your daughter out. But since you can't really travel too far while on chemo treatment, rather than quitting chemo altogether, talk to your oncologist about continuing and having the 12 treatments but is it possible to do the last 4 WITHOUT the Oxypilatin(sp?) part of it. It's probably the Oxy that is giving you a lot of the nasty symptoms. If you were to not have the Oxy and could handle the last 4 of 12 cycles, then that might be enough to convince your daughter and wife that you can handle it on your own with the change in chemo. Is your daughter going to be having a caesarian section? I can't remember if I read that but if she is then you will probably know the date of the birth. If she is, then see if they can arrange to have a laptop with a camera set up with Skype in the delivery room where you can be there via Skype from home (and it would be really kewl if your daughter's husband could have the same access from where he is, since it would just need an internet connection and a Skype account, which is free). Use that as a bartering tool also with your daughter... tell her that if that can be arranged, you will send your wife there to be with her in person and you'd be there as the next best thing in person. If they really can't arrange that in the delivery room (although I don't know why they couldn't), you could always have Skype conversations with your daughter/wife/grandchildren once she's home from the hospital... and they can see for themselves that you are doing ok.

I just think that cancer sucks big time but it would suck even more if because of a decision made in haste, you actually made it worse and those adorable grandchildren lose a grandparent, not to mention how guilty your daughter would feel if/when she found out.

So best thing would be to talk to your oncologist, see if there is some flexibility in adjusting the chemo, or if there is a way one could schedule the chemo around you being able to travel and getting a break from the chemo while you would be away.

Just my .02 worth.

Cheryl