Chemo begins on 7/27, strongly considering not having Perjeta

Options
sweetp6217
sweetp6217 Member Posts: 365
edited July 2017 in Chemotherapy - Before, During, and After

I really want to work during treatment but I've heard horror stories about the Perjeta part of TCHP. I already suggested it to my nurse coordinator, but she isn't in that camp at all. To top it off, the billing gal told me that my BCBS didn't want to pay for Perjeta. Even more reason, right? No. They (the doc, nurse, billing) are doing all that they can to make sure I get it come Thursday. Am I being backed into a corner? I'm considering postponing every thing. Silly me, I thought that I had a choice. Thoughts?

P.S. my time off pay is ridiculously low and my nest egg is pretty much gone due to prior surgeries, unrelated.

· Share on FacebookShare on Twitter

Comments

  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    I haven't heard of any Perjeta horror stories but I've been on it every 3 weeks since January. My only SE's have been dry skin (I just use lotion on my hands face daily) and some flushing (resolved when I had the infusion slowed from 30 to 60 minutes). Perhaps you could try it and drop it later, if it becomes a problem.

    · Share on FacebookShare on Twitter
  • stephaniebc
    stephaniebc Member Posts: 53
    edited July 2017

    perjeta is generally very well tolerated, and it increases your chance of pathological complete response (i'm assuming your doing neb-adjuvant chemo?) which is predictive of a better long-term outcome. unless you do have to pay for it -- my first infusion was billed $17 000 to my insurance -- then i really don't see any reason to not at least give it a try.

    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Hi!

    I didn't have problems with Perjeta. It's Taxotere that is most responsible for gastrointestinal distress during TCHP, not Perjeta. Plenty of ladies here had just TCH, and had diarrhea, constipation, acid reflux, etc.. However, I wouldn't recommend that you go without the Taxotere, either.

    I worked through chemo, though I had AC + THP. One thing that helped was keeping a journal of my side effects. While on Taxol + Herceptin + Perjeta, I knew that the diarrhea would start on Day #3. So, I would take my Imodium first thing in the morning on Day #3.

    That said, your doctors need to listen to you and be responsive to your wishes. If you really have problems with a treatment protocol, you can always seek a second opinion (and a new set of docs).

    Good luck!

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Thank you all,

    Illimae, Sage advice. I'll try to get them to infuse slower.

    stephaniebc, Yes, chemo before (hopefully) lumpectomy. I met my deductible, but the clincher is that if I can't work because of the side effects caused by the multi-step infusions, then no insurance come June 1, 2018. I really need to keep my average work hours up. (No pressure)

    ElaineTherese, Excellent tips. I am keeping a journal and everything they throw at me. What really bugs me is that the only doctors that said that I could call "anytime" were the doctor of radiology that consulted with me after the first US and my new cardiologist/fellow cancer sister. All the rest shut down after 4:30PM Friday; back on Monday morning. (Rant alert: It really upsets me that you can't get ahold of anyone on the weekend. No tests, no nurses, no doctors, NO ONE... unless you're up to a visit to the ER, but they're strangers). Maybe once my husband and I go to that education/orientation meeting next Tuesday, we'll get that all straightened out. And wow! You had AC too.

    Sending you all a hug.

    · Share on FacebookShare on Twitter
  • debiann
    debiann Member Posts: 1,200
    edited July 2017

    I didn't have Perjeta, but the taxotere and carboplatin were really hard on me. Fortunately, I am a teacher and most of my chemo fell over the summer. I would NEVER have been able to work during chemo. Most days I couldn't muster up enough energy to drag my butt off the couch to let the dog out. However, lots of people are able to work through chemo. I hope you are one of them.

    I did much better after they started giving me extra fluids 3-4 days after an infusion. I highly recommend that if you are having trouble.

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    debiann,

    Thank you. I'll add fluids to my list, right up there with requesting longer timed infusions.

    · Share on FacebookShare on Twitter
  • Beatmon
    Beatmon Member Posts: 1,562
    edited July 2017

    I've never heard of a clinic that doesn't have an on call Doc. Most likely they will send you to the ER anyway because they can't evaluate you over the phone. But nobody to even take call at all does not sound like a good situation to be in

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Good morning,

    The port is in and I had that orientation meeting with the head chemo nurse. After we covered all the important information about treatment and SEs, she whipped out a laser-printed flier from the ACS. There is an ACS Wig Boutique not to far from me, but I'll have to make an appointment (by calling one of the ACS's phone numbers). Going back to the educational part of the orientation, she said that my doctor would meet with me before undergoing chemo. On Thursday (tomorrow), they'll draw blood, then I meed the doctor. Small problem, he's out of town this week. For the order, there is no name for the meeting, just says "NURSE". Should have seen the look on her face when I told her he was out of town. I guess this isn't normal. Way to instill confidence. We'll see how that goes. But, at least there may be a wig in sight for me

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Beatmon, The chemo nurse covered just about everything that could happen and gave me a phone list that I can use if needed. ER visits were mentioned too, for the very reason you gave.

    debiann, I asked about fluids and she did say that I could call and come in for an extra drip or so when needed.


    · Share on FacebookShare on Twitter
  • illimae
    illimae Member Posts: 5,710
    edited July 2017

    sweet, just an FYI, I had chemo on mondays and was able to work the rest of the week with minimal side effects. Hopefully, treatment is easy on you too, just drink a lot of water and get plenty of rest.

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Illimae, I'm so glad you didn't suffer worse side effects. "Just drink a lot of water and get plenty of rest". Hehe! I'm doing that now except for the plenty of rest. I look like a detrol advertisement actor. Gotta go right now, or rather, 3 hours after I get into a deep sleep.

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    ElaineTherese, My journal will begin with this: I got the port put in and the tylenol is helping with that. Day 1 chemo: Good ole' insurance still won't cover my Perjeta (and I've waited long enough for treatment), bye bye Perjeta, at least for now.

    15 days for disposition? I can tell that no one who came up with that hard halt has had chemo.

    · Share on FacebookShare on Twitter
  • ElaineTherese
    ElaineTherese Member Posts: 3,328
    edited July 2017

    Good luck with your chemo, sweetp! By the way, my oncologist was on vacation during my first infusion. One of her partners looked at my blood work and met me before my first infusion.

    · Share on FacebookShare on Twitter
  • sweetp6217
    sweetp6217 Member Posts: 365
    edited July 2017

    Thanks ElaineTherese! That sounds better than what my appointment looks like "Appointment with NURSE". No name

    · Share on FacebookShare on Twitter

Categories