Next treatment plan

Kathryn_in_MN Member Posts: 1,252 Member
edited March 2014 in Colorectal Cancer #1
I'm going to be lazy and just post from my journal here below. I had my oncologist appointment yesterday. After my allergic reaction and ER trip last tx, my family wants me in the hospital for chemo. No one wants the responsibilty if I have a worse reaction. My husband says he won't be able to go to work - he'll be a wreck. My mother has been through my anti-biotic allergic reactions when I was a kid, and doesn't want to worry now.

I spoke with my nurse navigator and she thought it wouldn't be any issue to switch my chemo to the hospital for the full time. My oncologist thought otherwise. He said insurance won't pay. I asked why, since they could see that I'd had to go to the ER with an allergic reaction. His reply, "They aren't that sophisticat​ed. They see a procedure that is an outpatient procedure and they won't pay for it inpatient."​

So here I went in to my appointment expecting to say yes to more treatments, but only if they were in the hospital - but I came out with chemo scheduled for next week in the clinic as usual. I've been so scared I've considered stopping completely, but decided it wouldn't be much of a risk if I were in the hospital. Now I take more risk again. I was kind of in shock about it all on my way home. Surprised I didn't stand my ground on this. But for one more cycle I'll try it his way and see what happens.

My oncologist feels that the desensitiza​tion for oxaliplatin worked well for me. I think it was very successsful.​ My side effects from it were so much less, and I had no allergic reactions while on it. So that means I don't have to go through that protocol again right now to get more of the drug. I do still have to pre-treat with Benadryl and Decadron for 3 days prior - but this is more becaus​e of the 5-FU for me at this point. And I'll get both pre and post in the infusion room. And we are insisting it be given over the full 6 hours, no less.

He is reducing my 5-FU, as he feels that is what caused my reaction. He said we'd consider that I've tolerated 7 treatments with full dosing (even though we did have to drop the bolus of 5-FU, and I missed oxaliplatin one cycle). So I am one short of that magical "8" full treatments, but he decided it is time to back off the 5-FU a bit for me. We are hoping this helps reduce the amount to where I won't have another allergic reaction. It didn't happen till the end of the infusion - the last few hours the drug was still going in. I will have a steroid multi-pack like I got after the ER trip. I'll keep this with me, ready to take the highest dosing right away if I have troubles, and then go through the weaning down again. This is the solution to the allergic reaction. That and, "Just call 911 if it is serious." That makes me feel better... ha.

The infusors are gravity and heat activated. They will run the chemo into the body faster if you exercise too heavily or it gets warmer (like next to your body when you have a fever). I'd been warned about keeping the cats away from the infusor because if they chew on a line, it is toxic. The first treatment we locked them out of our room overnight. But since then we've not done that. Just to be safe, I leave the infusor under the covers. Well, after thinking about it, under the covers, and with cats snuggled against me, possibly lying on or next to it, could be a heat problem. I'm going to need to leave it out on top, away from my body overnight in the hopes that it slows back down again. The last 2 cycles it has emptied a lot faster than it is supposed to.

My mother plans to come up for this next cycle. She doesn't like driving in the city here. I don't think anyone does. But they really don't have the heavy crazy traffic like we do, so she really isn't used to it. If I'd use the closer office we wouldn't have to cross the river. But we really only have to deal with it one day for infusion. I'm not willing to do chemo at the other office, stuck in a chair that doesn't fit me right for 8+ hours, in a room with no feeling of privacy, when instead I can be where I am much more comfortable in a better fitting chair with heat and massage. In a room where I don't feel so "exposed." Am I being selfish? Yes. Will I change that? No. This is my "luxury" to help me get through something that is no fun. As long as I have the option, I'm chosing it. I know that is very selfish, but I'm going to be selfish right now.

I waffle between being ok with the new plan and being a little scared. At first I was upset after I left the appointment.​ How could I not stand up for what I thought was needed? But then I realized it is because the oncologist ​is the expert - not me. And so far he has made adjustments that have worked to get me through. So I have to trust him and see how this next one goes, and take it from there.


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  • lisa42
    lisa42 Member Posts: 3,625 Member
    which day?

    Which actual day are you going to the clinic again for the next chemo infusion? I'd like to pray for everything to go well for you, if that's alright.
    Bummer that insurance is so stuck in their little boxes of rules, and aren't thinking ahead. But, of course, they don't sit there and analyze each situation on a case by case basis and realize that it'd cost them even more if you ended up in ER again, but they just don't think like that. I hope that you've been able to calm down a bit since you posted. Do you have any Ativan or anything on hand that will help you relax? It might be worth asking for today, if you don't have anything.

    You take care, Kathryn, and know that people care and are thinking of you and praying for you for all to go well.

  • robinvan
    robinvan Member Posts: 1,012
    I hope it goes well.
    Glad to hear your Mom will be with you. You need to have someone with you through the first days of the cycle.

    This is #8... I think.

    Thinking of you... Rob; in Vancouver
  • thready
    thready Member Posts: 474
    Thinking about you!
    I hope things go well or at least better this time. I know we are getting close to finishing this up, at least on the downhill slide, but it still seems like a long journey. Just wondering why your Dr can't write a letter to the insurance and explain. I know there are exceptions to every rule, but somestimes the insurances won't bend.

    Take care and will be thinking about bunches.