Abraxane (chemotherapy)
I couldn’t find a thread that pertains just to Abraxane, so I started this one. I am on Abraxane since September 2021 (after a horrible 3 months on Piqray that didn’t work). I seem to mostly be tolerating it well, however with bouts of dizziness, constant clogged ears, occasional eye flashes and of course fatigue. Just wondering if anyone else is experiencing anything similar. I also had WBR in June/July so I guess it could be from that too. Maybe delayed side effects.
Hope you’re all doing well.
Jackie
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hi Jackie,
I was on abraxane for 12 months (& taxol for the 9 months before). I needed a dose reduction early on for fatigue and neuropathy but with 1 dose reduction I did really well. I had no issues with ears.
I did have problems with eyes - I'm prone to scintillating scotomas. My eye dr says it's related to migraine but I hardly ever get the headache, just the eye problems. Frequency of this definitely increased while I was on abraxane.
I iced hands and feet religiously. Chemo room nurses and MO all said that they take people off abraxane for 2 reasons: it stops working or their neuropathy is too bad. I figured I'd do what I could to prevent the neuropathy...
The fatigue was way better with a dose reduction. I was on it q 21 days and needed to take it easy or have a nap on about 3-4 days out of that cycle; the rest of the time I was fine.
I had my last abraxane on Dec 16 2021. I have progression now so moving on to new tx.
I hope you get a nice long run on abraxane!
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Thank you for responding moth. I'm so sorry you progressed again. What is your next line of treatment?
I had to look up scintillating scotomas but that is very similar to what I have. It looks like zig zags or lightening bolts. Sometimes flashes. Very weird. I never had that before even when my vision went double in one eye due to a brain tumor. I had WBR and that eventually went back to normal. But seeing these flashes makes you think the worst. I'm making an appointment with neurology ophthalmology for next week hopefully.
My Abraxane schedule is once a week for 3 weeks then a week off. The neuropathy is a little worse but so far manageable. I hope I have a long time on this too. One thing I worry about is that it doesn't reach the blood brain barrier, but hopefully radiation took care of that.
Keep me posted on your treatment. I wish you all the best.
Jackie
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Jackie, I'm waiting for approval for trodelvy. It's only recently been approved in Canada & it's not funded by my province so lots of bureaucracy.
For the eyes, when it happens check whether it's happening in the same place in each eye. Cover your other eye with your hand... if it's bilateral, it is more likely to be this. If it's on one side, it can be sign of retinal detachment and my optometrist said to call her office right away if it was just one eye. I actually did have a partial retinal tear that needed laser surgery to repair but that one was asymptomatic - caught early on an eye exam....
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moth…
I'm getting myself all worried and scared again because of course Dr. Google says it could be a mass. All I do is worry now. It's almost constant.
But when I experience the flashes I'm pretty sure I've had them in both eyes but sometimes at different times and sometimes different looking. I had a brain MRI on October 28th and all was clear. I did also read that Abraxane can cause scintillating scotomas, but rare. I have a call into neurology for an appointment. I really hope this isn't yet another problem.PS…Good luck with trodelvy. I really hope it works well for you. Please keep me posted.
Jackie
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Jackie:Like you, I couldn't tolerate Piqray. Although I've been on Taxol for 14 months now, there are really more similarities than differences among the Taxanes. I was just fortunate not to have a reaction after protocol of IV premeds Benadryl and Dexaxamethozone before Taxol administration. I did have a dose reduction after several months and now on one week on, one week off. Neuropathy has stayed steady. Just walk like a drunken sailor and have to be super careful with balance. I do take vitamin B6 and Alpha Lipoic Acid. Since Gabapentin makes me loopy, I now take Pregabalin (Generic Lyrica) which keeps the tingles away and also helps with sleep. I quit icing awhile ago. Just couldn't deal with it anymore. Thankfully haven't noticed any increase in neuropathy although I wouldn't recommend that anyone follow my example since so many women have found it helpful. Unfortunately, after Taxol, what else is left also causes neuropathy. Next stop is likely Eribulin.
What a rough journey we are on! Scans tomorrow. Fingers crossed. Not looking forward to changing meds as there is not much left. It's been 5 years of BC and 6 years Stage 4. Yikes. Eye flashes infrequent. Fairly common in people my age, over 70. Eye doc not concerned. Whew. Dodged one bullet. Best to you and Moth!
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I’m on Abraxane, dose reduced to every two weeks but also part of a trial. I’m on cycle 10, having a hard time with neuropathy on my feet. I did ice them today but it’s tough for me to do because of how far I travel for treatment. I guess I will have to get a giant cooler and way more ice packs. Cancer centre here doesn’t help with that kind of thing at all.
CT just came back good, most liver mets stable, largest one seems to be necrotic.
I was on piqray on a trial, horrible drug for me but happy that it seems to be working well for others
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So I had a late email from my trial RN, my TM's have gone up another 90 points from 4 weeks ago, so all may not be well on this trial. She indicated that MO may want to put go back onto 3 weeks on, one week off which we switched from because of SE's. Not sure my feet can handle much more neuropathy as Moth indicated was a major reason for going off nab-paclitaxol. I am going to try accupuncture and see if that can help at all.
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GG27…
So sorry to hear about TMs. I worry about them constantly. I guess I worry about everything now constantly. I am on the 3 weeks on and 1 week off schedule and also have neuropathy in my feet. So far it's manageable, but every now and then I feel a big pinch that makes me jump.
It seems odd that your CT came back good but your marker went up. Did you ask why that could happen?
Good luck and keep us posted.
Jackie
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Jackie,
The CT scan result came back before my MO appt on Monday, the TM's have been very slow to come in & they didn't come in until Wednesday. My TM's have always been very accurate for me, so it tells us what is happening or rather not happening. I emailed my trial RN today and my MO wants to talk to me prior to changing anything. So I'm on the week on/week off until Feb 7th. It gives her & I some time to think about future plans.
cheers, dee
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Ok so another possible side effect (I hope nothing worse). Nosebleeds? It’s just when I feel congested and blow my nose. But it’s a decent amount. Anyone else?
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Jackie, yes to nosebleeds. It was just a bit of dried blood (sorry for TMI) but now I quite often get an actual nosebleed. Really peeved me off the other day when my nose bled onto my brand new rose coloured sweater. Trial RN or MO doesn't seem to be concerned at all. I think it stops when we stop Abraxane.
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GG27…thanks so much! One less worry. I hate when you don't know when side effects are just side effects.
I have a neurology ophthalmology visit scheduled for early Monday morning. Hopefully my eyes are ok. They've been better the past few days (knock on wood). Maybe it happens at a certain point during treatment. I'll have to pay more attention.
Oh and did I mention clogged ears? Constantly. Sometimes with pulsating sounds. Saw ENT…nothing. WBR could have damaged ear nerves.
Jackie
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Just home from Neurology Ophthalmologist and he said my eyes are fine. The flashes I am experiencing are due to migraines. I never got migraines before, but I guess I'll take it. He doubts it's any kind of tumor based on symptoms and that I just had a clear brain MRI on 10/28/21. I'm 90% relieved lol.
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What a relief Jack5ie I am so happy for you
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JACK5IE, glad it's nothing serious
So it's like the scintillating scotomas I have. those migraine vision flashes are annoying af. Fwiw, ime exposure to bright lights can trigger it. So I always wear sunglasses or a brimmed hat when out on a sunny day. During winter sun when it comes into the house at a low angle, I'm super careful to stay away from the windows. Can't watch movies in a dark room either- too much contrast.
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Thank you both!
moth…thanks for the tips! Yes, same as you but he didn’t use the terminology (I don’t think).
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I think technically the condition is ocular migraines and the name of the symptom is scintillating scotoma.
I'm going to try some of those disposable moist warm eye masks that I saw online. Several people told me they make the whole eye are feel nice & I wonder if it would help settle the nerves in the eyes (& also I need the moisture...)
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moth…
Me too on the dryness. Have a link?
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Jackie,
Glad to hear that it's "only" a migraine! Not fun, but glad it's not anything more serious.
cheers, dee
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Thanks Dee!
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JACK5IE, I'm using gel moisturizer drops at night and regular moisturizer drops in the day so the mask would be in addition to that. Not sure if it would do much on its own but it sounds relaxing
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moth it does sound relaxing.
I use Systane eye drops. It’s not gel though. Think the gel is more moisturizing? Sorry for all the questions.
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I think the gel is supposed to last longer so I use it at night. My optometrist suggested an ointment for night time but I must be allergic to one of the ingredients...or it's so sticky that dust and dog fur get stuck in it? ..either way, i woke up every morning with painful eyes so I switched to the gel.
I don't know if you know Dr Glaucomflecken on Twitter or Tiktok- he does comedy but he also wrote up this list of good OTC eye drops and what to look for https://www.drgcomedy.com/pharmacy-eye-drops
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That was a funny article moth. Thanks for the list!
Ears pretty clogged today. Ugh.
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I just started Abraxane, 3 weeks on, 1 week off with Pembro every 6 weeks. Can I expect to lose my hair again with this protocol?
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Hi Betsy…
I lost my hair with whole brain radiation in July 2021. It hasn't grown back at all while taking Abraxane which I started September 2021.
Jackie
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I haven't had any hair grow while on abraxane. On taxol I got a tiny bit of fuzz coming back around the 5-9 month mark but then I switched to abraxane; did 13 mos of abraxane and lost the fuzz right away and have had no hair at all
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Putting this here again.Do any of you have ear/hearing issues? I already saw an ENT and he said my hearing is fine but to me it is muffled plus I hear various noises. ENT said it could be from the brain radiation I had last July, but I think Abraxane is causing it. Anyone?
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