Herceptin + Perjeta for maintenance post chemo

carolsue63
carolsue63 Member Posts: 126

Is anybody here on Herceptin and Perjeta for maintenance after finishing chemo? My oncologist is trying to get my insurance to approve it even though apparently it's not "standard".  Just wondering if anybody else has successfully gotten this treatment approved through their insurance. 

I'm also curious about the side effects from this combo. I'm currently getting Perjeta with TCH, but Taxotere is so terrible, who knows if any of the side effects I have are from the Perjeta. I was on Herceptin for a year back in 2010-2011, and it was pretty manageable. I'm hoping Perjeta won't be too bad either.

Comments

  • Kjones13
    Kjones13 Member Posts: 1,520
    edited April 2014

    I had written a long response and lost it...the jist of it...I have been on h/p maintenance since February 2013. I am not sure about side effects because, like you, it was hard for me to discern between taxol and h/p se's. I have heard others say that perjeta caused them diarrhea. This could be the case, but I take calcium supplements and pain meds, so I have the opposite problem. I have had very few side effects, if any. I have noticed a little more fatigue and a little nausea. Nothing to write home about. My best news to share is that while on just h/p (and tamoxifen and Xgeva) I have had continued regression of the liver tumors and spine tumor! Two of the tumors in the liver are now undetectible! I really hope you can get these drugs. I didn't hav any issues with my insurance for approval. Best of luck!

  • MarshaMay
    MarshaMay Member Posts: 95
    edited April 2014

    I began P/H and Taxol in August 2013.  By October I was NED.  In December I finished the Taxol and have been on just P/H.  My onc is really pleased and I am so happy.  I only have to go to the infusion center every three weeks, so hubby and I can travel and the SEs are negligible -- some big D and the ever present fatigue. Hope your insurance problems get resolved quickly.

    My onc and I are not thinking of the P/H as maintenance just hoping that I can stay with it for a good run.  We'll look at Kadcyla next, and then she has some other chemos to try paired with either H or P.  

  • carolsue63
    carolsue63 Member Posts: 126
    edited April 2014

    Thank you for the response -- especially after losing the first one. Been there, done that, and I know how frustrating that is! Glad to hear you're responding so well to this treatment! That's awesome news!! So you're just on h/p now, without the taxol, right? Did the worst s/e's ease up after stopping the taxol? 

    I was on TCH 4 years ago, and TCH+P now. The s/e's haven't seemed too much different with the addition of Perjeta. I had diarrhea with terrible abdominal cramping both times, so hard to say if the Perjeta has anything to do with it when I know the Taxotere is perfectly capable of making me that miserable all by itself. Chemo has been much harder overall this time, but I blame that on the fact that I was SOOO, SOOOO, sick going into into it this time. Lung mets with pleural effusion, I had been coughing and short of breath for months, and was getting sicker by the day leading up to the time I started chemo. Thinking I also had a bad case of reflux, my regular doctor had me try Prilosec, and I had a terrible time with it. It completely killed my appetite -- I think by stopping the acid production in my stomach, food wasn't moving out, so I had this constant feeling of fullness and could barely force myself to eat. In the 2 weeks prior to finally getting the cancer diagnosis, I dropped 15 pounds in 2 weeks! And I was at a healthy weight to begin with. Luckily, I was at the high end of my healthy range, so I just ended up toward the low end of the range, but still a healthy weight. So I got the phone call that it was cancer on a Wednesday, met with my MO on Friday, had my port put in on Monday, and started chemo on Wednesday. Talk about a whirlwind! That first infusion was ROUGH. Had to stop the Perjeta for 30 minutes because my O2 sats dropped into the 80's. They put me on oxygen and started back again. Then I started having breathing problems again with the very last med (Carboplatin). Doc decided I'd had enough and called it a day. They ordered an oxygen unit for my home, and I was on oxygen 24/7 for several weeks. Those first couple of rounds of chemo made such a HUGE difference in my breathing symptoms, and I was able to go off the oxygen completely. As tough as chemo has been this time, it's been such a blessing to actually feel my health improve with each treatment. It's been a nice trade off for the yucky side effects. Round 5 was yesterday, so I just have one more to go in 3 weeks, then on to maintenance! Sincerely hoping it will be H+P and that the s/e's will be manageable. I think I'll be getting Arimidex, too, so I won't know what to blame. LOL 

    Sorry to have rambled on so long. Blame the steroids. LOL 

    Thanks again for your response -- it gives me a lot of hope :-)

    Carol

  • carolsue63
    carolsue63 Member Posts: 126
    edited April 2014

    MarshaMay -- thank you for your post as well. I had already started my long-winded post before seeing yours. I'm so happy for you getting to NED. That's awesome! 

    I just got the results from my first PET scan since starting treatment (after round 4), and while not NED, they said it was dramatic improvement. The lung infiltrates were nearly completely resolved, with just a little bit remaining in the upper lobes. The pleural effusion on the left size reduced in size by 50%, and the one on the right was completely gone. A lymph node reduced from 3x2 cm to 2x1 cm (normal size) and it didn't "light up" on the PET. The bone spots I had were stable on the CT part of the scan, which my MO said was good -- it can be hard to make those go away, and they weren't lighting up on the PET, either. NOTHING lit up at all!  So overall, we're very happy with the results so far. Hope to see even more good news next time!

  • Ohmydarlin
    Ohmydarlin Member Posts: 292
    edited April 2014

    I have been on Herceptin since diagnosis in Feb 2012 . Initially combined with Abraxane & Xgeva. Once I reached NED the chemo was dropped and Tamoxifen added. In November of 2013 I had one spot light up on a PET scan. My MO didn't think we should jump back to chemo so she added Perjeta to Herceptin, dropped Tamoxifen and replaced it with Arimidex.  I have been fortunate to have no side effects since adding Perjeta. At this time a PET hasn't been scheduled so fingers crossed the changes are working!!

  • tommygirlonlyone
    tommygirlonlyone Member Posts: 1
    edited February 2020

    I have was on herceptinn for a year in 14 and now have been on it and perjeta with 12 weeks of taxol since July. Side effect were from taxol

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