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Herceptin UPSC

jjtrim's picture
jjtrim
Posts: 24
Joined: Mar 2019

Hi All,

I was hoping those of you who have been on Herceptin would chime in and share your experience.  With the support of many of you on this board, I pushed for genetic testing for my mother who has recurrent UPSC and is being treated at Kaiser.  Her results came back Her2/neu positive and she has been approved for Herceptin and will get the infusions with her 3 remaining carbo/taxol treatments.  My understanding is that the infusions are about 30 mins long, usually given every 3 weeks for up to a year.  The side effects are minimal compared to chemo, though there is some risk for heart damage. Herceptin has been found to pretty significantly increase PFS for advanced stage and recurrent UPSC. 

I feel very, very fortunate that we were able to get this added to the treatment plan especially since Kaiser was really dragging their feet about doing the genetic testing. I am grateful to have been armed with the information that I gathered here when I insisted the testing be done.

What has been everyone's experince with Herecptin?  Did you get approved for 1 year long treatment?  Were the side effects really not that bad? Our NP is not available to respond to questions for a few days and when I do speak with her I want to be prepared.  I feel like I need to be very proactive with Kaiser. 

 

Thanks in advance. Wishing you all the best. 

zsazsa1
Posts: 449
Joined: Oct 2018

I began Herceptin with my second of six rounds of carbo/taxol.  I was approved for a year of treatment.   I finished carbo/taxol March 1st.  I've now had I think four treatments of Herceptin alone since the end of chemo, and as far as I can see, I have no side effects whatsoever from them.  Nothing.  Nada.  Zilch.  I go in, get the infusion, and continue on with my life.

If it were causing GI  or hematologic side effects, I don't know if I could tell, since I'm having both of those from external beam pelvic radiation, which I completed on May 6th.   But so far, my cardiac echoes are fine, and I don't have any joint aches or other discomfort after the infusions.  It doesn't even seem to affect my energy level.

I think that the reason that it's generally used only for a year in USPC is that it seems to lose efficacy before then, so is of no use longer than a year.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2680
Joined: Mar 2013

so happy to hear you were able to get this added to your mom's treatment!  None of us go through this journey alone.  We need the love and support of our family and friends.

Kaleena's picture
Kaleena
Posts: 1980
Joined: Nov 2009

my mom has been on herceptin only for breadt cancer for 3 years now.   It dram reduced her tumor to allow a lumpectomy and the lung nodules disappeared.   There were no side effects.   Only the first time because she was nervous.   If you are on it awhile you have to get s MUGA test which checks your heart.     My mom has been good and can still do treatment.   She goes every 3 weeks

Little Annie
Posts: 28
Joined: Jul 2018

I started a maintenance Herceptin only treatment every 3 weeks after 6 cycles of carbo/taxol and 25 radiations.   Side effect mild initially.   Maybe some bone pain after 6 months.   The treatment was to last one year but a recurrence happened after 8 months so the Herceptin was stopped.  Currently on the PARP inhibitor olaparib.

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