Need stage IV survivor experiences with Havalen, please!

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slepeint
slepeint Member Posts: 20
edited September 2016 in Stage IV/Metastatic Breast Cancer ONLY

I'm looking for the experiences of stage IV breast cancer survivors with Havalen. All stories welcome! I'm kinda getting a sense that it's a matter of "when all else fails, try Havalen" kind of shot in the dark.

How long do infusions take?
How much hair loss? Like Taxol? Or just thinning?
Effectiveness reputation? I really want to know what is on the rumor mill. I personally like to know the worst/best scenarios. It makes me feel more secure and helps me plan my FUN!! Please don't be afraid to share bad rumors. I will check in with my oncologist and verify. Heck, I was warned I might have less than six months in January of this year and I'm doing GREAT!

About me:

I'm moving to Havalen this week and continuing Perjeta/Herceptin and Xgeva. Dropping Xeloda.

We discovered my cancer changed from HER2- to HER2+ in February of this year (2016) and still don't know how much of my cancer is HER2+ and how much is still HER2-. My cancer is very advanced and has lots of places and spaces to wreak creative havoc!! So we want to try more general chemo before moving to approaches that only target HER2+.

Diagnosed HR+/HER2- Stage IV in June 2014 (originally Stage 2B in August 2008). Burned through all the HR+ stuff in six months (Aromatase inhibitors, Faslodex, Affinitor, etc.). Taxol worked well for 6-7 months. Navelbine was eaten up like candy by my cancer. Triggered a biopsy to look for traits that would qualify me for studies. No good study options, but new HER2+ diagnosis!! A New Hope! Not my favorite Star Wars, but I'll take it!

Suzy

http://thecolorofhopeblog.com

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  • blainejennifer
    blainejennifer Member Posts: 1,848
    edited August 2016

    https://community.breastcancer.org/forum/8/topics/...

    The above is the thread on Halaven. Some good stuff there.

    Also, here is a link to a pertinent study on Halaven: http://link.springer.com/article/10.1007/s10549-01...

    The take-away on the study is that Halaven rocks. The Halaven cohort had superior disease control compared to the "dealer's choice" cohort.

    Infusions of the actual drug take ten minutes. I do better with a 30 minute drip. Pre-meds and fluid can take up to an hour. I usually get my port accessed, then they run the blood draw to the lab while they start the pre-meds. I'm out of there in 1.5 hours.

    You will probably lose your hair.

    Side effects are fatigue, nausea, anaemia, and neuropathy. You might not experience any of these. It's a cytoxic chemo, like Taxol, and very similar in user experience.

    I've done so well on this stuff, that my Onc was bandying about terms like "durable remission", and "switch to a control regimen". Giggity. TMs started out in the 100s, and are now at 29.

    Listen, most cytoxic chemo sucks, but if it does the job, we put up with it. I've kept up with my life on this stuff, and only hit the sofa hard two days after the infusion when I get the crash from the steroids. It's year 4 for me of treatment, and honestly, I've got a kid, so I would infuse lye* if it would do the trick.

    I hope Halaven is great for you. My Onc feels it is completely under used, and has seen very good results in his practice with it. Feel free to ask any questions you have. Plus, isn't Doxil the shot in the dark drug? :)

    Jennifer

    * Not really, but you get my point.

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  • Emilylaughed
    Emilylaughed Member Posts: 50
    edited August 2016

    Thanks for this post, Jennifer!

    My mom just got her first infusion today—I'm not finding much information on the drug, and I'm praying that she's able to find some relief. She's on the third recurrence of localized cancer (this one to the skin and soft tissue; no big tumors to fight, but lots of swelling and lymphatic involvement that's making her miserable). I'm so grateful to read a story about it working well; everyone's tale on this drug is so different!

    My mom's brief story: DX October 2012 with stage IIIC. Treated with A/C, followed by a radical mastectomy and radiation. Recurrence to fatty tissue, treated with Xeloda & Radiation. Recurrence to pleural area of left (affected side) lung. Treated with surgery and Ibrance. Started developing lymphedema in February, which turned out to be more from cancer recurrence than anything else—We had hoped that we would get her enrolled in a clinical trial, but she couldn't lie flat for the scans needed, so the Oncologist tossed us on Halaven to try and knock this from her system. The hope will be to add in hormone therapy if this proves a viable option for her.

    I'm not looking for miracles. I'd just love for her to not be in pain anymore. Jennifer, if she has even some of the reaction you've had to it, we'll be over the moon. :)

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  • LvinAZ44
    LvinAZ44 Member Posts: 213
    edited September 2016

    i started on abraxane in November 2015. In March three appeared to be spots on liver, markers went to 238 or something close to that. Went to havalenb, within 4 doses markets went to 59, now at 17. Hoping they are same or lower Friday when I see Dr. Hair loss, yes but I had that with abraxane. Neuropathy is much worse in both feet and right hand. But Dr says havalen did the trick and about 95% of disease is gone, spots on lungs disappeared. Thus we but a last line of defense for me, dr just wanted something less harsh. My treatments have been spaced out and am hoping if numbers are down or stable we go to a maintenance drug. Good luck, this does seen to do the trick.

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