A place for those managing the ups & downs of a Stage IV/metastatic breast cancer diagnosis. Please respect that this forum is for Stage IV members only. There is a separate forum For Family and Caregivers of People with a STAGE IV Diagnosis.
Posted on: Dec 12, 2018 01:08AM
Ladies, after trying Verzenio/Faslodex for three months I am not one of the lucky few who respond. Sigh. We are declaring my cancer hormone-resistant, for once and for all.
So now I have a choice: Taxol, Halavan, Navelbine. The SE profile seems to be the same on paper. . .except that MO says you keep your hair on Navelbine? I don't care so much about hair. I care about being able to work. I need to hold on [if I can] until my boss retires -- another nine months. Long story.
There's a fourth choice -- a phase I clinical trial of an oral version of Taxol. I'm planning to talk with them about it but don't know yet if I want to try for it.
I did take Taxol in Stage 3 days without major difficulty (or neuropathy).
Can anyone with experience with these drugs give me some idea of whether there's an "obvious" one to do first? Suggestions?
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Posts 1 - 13 (13 total)
Dec 12, 2018 04:18AM JFL wrote:
Pajim, they are all powerful drugs. All are good choices.
As far as Taxol goes, I have taken 3 taxanes - Taxol, Taxotere and Abraxane. I had a severe allergy to Taxol and had to quit that treatment 2 minutes into my first infusion. A very tiny percentage of people go into anaphylaxis due to allergy to the binding agent, cremaphor. With Taxol, you would have a better quality of life as far as toxicity goes if you do it weekly (and I believe it is ever so slightly more effective that way), but weekly is tough with work. I did Abraxane recently on an every 3 week schedule for work convenience whereas most people do that on a weekly schedule. In the long-term, the biggest challenge with the taxanes is neuropathy in legs/feet and possibly hands (depending on your job). I worked full time through a very potent dose dense course of Taxotere (which is higher than the recommended FDA safe dose and extremely toxic) for 2 months and high-dose Abraxane for 7 months but it did get challenging near the end with each. I could walk but had some trouble with moving all around the building as frequently as I usually would and cut back on discretionary walking. I also had some challenges wearing heals but that may not be an issue for you. However, no one else noticed and I didn't have to modify my work schedule although I did find myself planning out tactical issues like how to reduce the amount of walking I needed to do throughout the day. I found that sublingual Vitamin B complex helped a lot with the neuropathy, particularly in the hands.
I haven't tried Halaven or Navelbine but either of those could be next for me. I am switching from Doxil to my next med and am trying to get into a trial but could take either one of those if the trial red tape takes too long. My MO has been recommending Halaven and I am interested in Navelbine myself. I have heard that Halaven is pretty tolerable, overall. I have heard the same thing about Navelbine. Navelbine has an oral pill formulation which is available in Europe and has been for a long time but the manufacturer never pursued it in the US (beyond clinical trials, some of which are still ongoing). Very annoying to me as I was researching this last night and it appears the only reason it hasn't been marketed in oral pill form in the US is money. Navelbine has been generic for a long time and there isn't much money in generic drugs. So sad and very frustrating. If it were available in oral formulation, I would jump on that as an option.
If I were faced with Taxol, Halaven, Navelbine or a trial of oral taxane (tesetaxel, I presume), with your treatment history and work situation, I would take the oral taxane. I have read a lot about it and it sounds promising. Much more convenient and it has been reporting less side effects, particularly less neuropathy and hair loss than IV taxanes. Good luck making your decision.
Dec 12, 2018 02:06PM pajim wrote:
Thanks! Given your enthusiasm for the oral taxane (which is called Oraxol) I can bump it up my list. I don't [yet] know what the trial entails. Nor whether they would have a slot for me. I didn't think of asking whether I could do something with an every-three-week schedule.
Daniel, I'd had bone mets only until this summer. In July CT scan showed one single liver met. At that time I made the totally defensible but possibly risky decision to re-try hormonals after a year on Xeloda. Didn't work out for me. I now have a couple of liver mets and the bone mets are "slightly worse". And, "does your left leg hurt perchance?". LOL.
I"m sure I'll see all three of these drugs over time. And I'm sure the second one, whichever it is, will cause more side effects because I'll have coped with the first one. I'm trying to have a sense of humor about this but the thought of moving to iv chemo is a blow. Pity party for a day or two then I'll buck up.
Dec 12, 2018 09:16PM pajim wrote:
Last go-around we discussed low dose methotrexate plus cytoxan. They're oral. It's what they call "metronomic chemo". Very low dose but without breaks. We're holding that one for a break from big time chemo. So maybe a year or two. It's a great suggestion! I'd forgotten until you brought it back up.
Dec 13, 2018 04:47AM Cure-ious wrote:
Pajim, like everybody, we're following your choices closely! You're approaching six years, past time when the hormonals are crapping out- but how about Alpelisib/Faslodex, in case a PI3K mutation is causing the endocrine resistance? (Or did I ask you that already?)
Dec 13, 2018 04:49PM jobur wrote:
Pajim, I'm sorry you have reached that point where all the choices are kind of crappy. Also sorry I have no insight into which is the least crappy, but just wanted you to know that I am rooting for you and confident that you will do your research and make the most intelligent choice.
Have you had any genetic testing (I'm thinking Foundation One or ?) and has it helped inform your tx choices?
Also, can I please join your pity party? A little old liver met and progression in pelvis has overturned my boat after 3+ years on DeNial.
Dec 13, 2018 08:36PM NewGardener wrote:
I have also been trying hard to squeak every possible hormonal treatment in an attempt to avoid IV chemo. I'm now on my third trial. My current trial is for a pi3kca inhibitor with fulvestrant - I qualiified after doing a FoundationOne genomic profile that found I had the mutation.
I haven't had any of the three options in the metastatic setting. I had taxol when I was Stage II and hated it. My oncologist had offered Navelbine before I started my clinical trial in 2015. I understand erubilin/Halaven can be tolerable - and I believe the clinic visit is short.
I'm chiming in here to mention that Phase 1 trials may be very time consuming. I am not working so I've been able to manage it, but it might be hard if your employer isn't truly accommodating. For the first 8 weeks of my current phase 1 trial I had to go weekly. 3 of those visits were multi-day. 3 of those days involved 8 hours of hourly blood tests. So be sure to ask about time commitment for the oral Taxol trial, which otherwise sounds quite interesting.
Good luck with your choice.
Dec 14, 2018 10:39PM pajim wrote:
Jobur, I'm so sorry, grr. Progression just hurts. And this time, for some reason, it hurts me more. Maybe because I've caught some virus-or-other and am feeling sick. I've done more crying than I usually do.
I've now had one MO visit, one phone call and a fair amount of research. Apparently (did anyone know this? I didn't) only 30& of women respond to Taxol. Another 30-35% get stable disease. Same deal for Halaven.
The investigator running the Phase I trial doesn't seem enthusiastic about it. It was not a "you're interested? Let's sign you right up!" kind of conversation. It's possible that it's because everyone is so enthusiastic about immunotherapy that they don't care about the rest of the stuff. Exceot Lo! Immunotherapy doesn't work on hormone-positive BC. Sigh. Trial requires a bunch of PKs and taking 12 pills twice a day. Not the most convenient ever (though seems equivalent to 3 hours in the cancer center getting iv chemo)
My husband doesn't want to take a second 'flyer' in a row. My MO is being carefully neutral on the subject but I can tell he agrees with my husband. That weighs with me. They both love me and want the best quality of life for me.
I asked about a biopsy but MO didn't jump on that idea either. Sometimes I think the Farber is too conservative. I could and may insist. They tested the material from my mastectomy 10 years ago and found no mutations.
It appears that Halaven and Taxol are a toss-up. Except that Halaven is 2/1 where Taxol is 3/1. Taxol has all those premeds and a longer infusion.
This is not as hard as four months ago -- I think the cold/flu/whatever is dulling my brain. Anyway I'm planning to think about it over the weekend and go from there.
Dec 15, 2018 10:47AM - edited Dec 15, 2018 10:50AM by Heidihill
Pam, I am sorry to hear your last combo didn't work. I'm not really in a position to advise on the options given to you, except that perhaps something that may not depend on your gut microbiome or liver enzymes may be a better choice given that your last oral med may have failed you. A lot of "mays" there. Lol. I am rooting for you with every toast I make this Season.
Dec 15, 2018 01:59PM susan_02143 wrote:
You wrote "Taxol has all those premeds and a longer infusion." I was able to eliminate all the pre-meds within the first two cycles, so they might not be required. Of course, you don't know if you can eliminate them until you are actually getting the drug! Though not standard protocol, once we saw that the Taxol was working for me, we changed my infusion schedule to 3 on-2 off which I miss terribly! I am actually at the hospital more often with the Halavan.
I totally get the "crushed to go to IV chemo." For me that was a line in the sand, and there was no going back. Almost two years later, and I still mourn the carefree days of old. :-)
Dec 23, 2018 07:12PM - edited Dec 24, 2018 02:43AM by ShazzaKelly
just want to give a plug for Oraxol. I was on iv taxol weekly for 2 years and then switched to the Oraxol trial. The difference was like night and day. The oral was so much easier to tolerate without any of the side effects of the iv. There were a lot of tablets to take and a fasting protocol that takes a bit of getting used too but all in all a very doable treatment.I had 2 good years on Oraxol before it stopped working. I would recommend it to anyone
Dec 23, 2018 08:04PM SandiBeach57 wrote:
Thank you ShazzaK. I have written down Oraxol in my future potential drug choices. It looks very promising..you are proof. So looking forward to all the new working treatments for metastatic breast to be FDA approved.
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