Abraxane
Comments
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Kim, thanks for your quick response. I am going to buy this tomorrow. What is guaifenesin?
Robin
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I am also curious about what guafenesin was used for in this context. It is an expectorant typically used to break up mucus in the bronchial airways so it is easier to cough up. It is an ingredient in many cough syrups.
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I have found that when I am having sinus issues that guafenesin helps thin secretions in my sinus/upper airway. I used it recently when I felt like I was about to get a sinus infection and was already taking sudafed & claritin.
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Thanks for the explanation. I might try guafenesin for sinus issues too. Never thought of it before.I have had a low grade sinus infection kicking around for a long time now.
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Hi Folks,
After the trial at MSK failed me, I will be boarding the A-train on April 10th. It's been very helpful reading through your comments to gain a good understanding of what's ahead for me. I was initially dx 25 yrs ago and was asymtomatic for 10 years. I'm ER/PR+ Her2(-). Bones mets in 2003=letrozole for 3 yrs, bone marrow infiltration in 2016=Faslodex and Ibrance. Liver mets showed themselves on my November 2017 routine scan. P1K3 mutation identified = clinical trial from 01/30 to 3/22. Scan revealed progression = Abraxane. I have a great deal of respect for my local oncologist. She saw me within a day of me reaching out to her. I'm starting on 04/10 because this will give my body a wash-out period,,and I will go to Turks & Caicos 04/4'to 04/8. A much needed mental and physical break for me. I'm going with very very special friends, the kind you don't need to entertain and take comfort in being together. Then back to my real world. Port will be placed 4/10 am and chemo to follow directly afterwards. I have hope, as we all do, that the Abraxane just beats down my liver mets and relives a level of stress. When pressed, my oncologist stated she is optimistically guarded about my prognosis. I'll take those odds and move forward. Mind/body connection is very important to me and I truly believe I'll respond well to this med.
Please know how helpful your comments have been to me and I look forward to riding this train into the great scan result station. I think I'm a bit punchy right now, but you get the picture! Good night 😴0 -
Scout - I am rooting for your A-train ticket to be first class much like Robin's! I had 5 1/2 mos on it before head/bone progression and it dropped my TMs dramatically. I was able to work and used cold caps to save my hair. Enjoy Turquoise (Turks& Caicos) - love it there - fab beaches and golf. Then come board the train. A-train can beat down liver mets for sure. In my humble opinion, it beats most stuff south of head & neck. Other meds are better there. I'm back on Madame X in 2 weeks.
(()) Claire
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Thanks Claire-I appreciate your feedback, it's very encouraging.
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I have been on abraxane and herceptin for a month. My tumor markers have risen 74 points. I assume the chemo is not working. I am devastated. When do I just quit treatment? I still have the numb chin syndrome. I suppose it is in my jaw. Happens to only 1% of people.
The weird thing is I am asymptomatic as far as my actual mets go.
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Lisa, I’m sorry that you are not seeing the desired results of treatment yet and I can read and understand the fear and frustration in your post. I can only recommend that you try to focus on if you feel ok right now and not the TM’s and not to waste energy worrying about chemo working or not until scans confirm the results of chemo. I know it’s easier said than done.
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illimae-Thank you for the encouragement. I am completely asymptomatic as far as all my mets go. I do have to get an MRI because my leftside of my chin and lower lip is numb. It is not like novacaine numb. I can prick it and pinch it-but what I read about numb chin syndrome is not pretty. Like months to live. This whole experience is wearing me down. I am so sad.
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I thought I should share this article on cryotherapy (wearing frozen gloves and socks) for Paclitaxel induced peripheral neuropathy. The article says that it it useful:
https://www.medscape.com/viewarticle/894060?src=wnl_edit_tpal&uac=236851EX
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Hi Team Abraxane. I am likely joining you guys on Abraxane on Monday. Reading extensively at the moment. For now I just wanted to say hi, thank you in advance and let you know I am lurking.
>Z<
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Darn it Z, I didn’t want to see you here (anyone for that matter).
I will say it’s doable though. The neuropathy can get bad but even at a reduced dose, it can work really well.
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Golly, Z, fancy meeting you here. I hang here with my A-train pals as well as on the weekly Taxol thread because I figure the taxanes play out similar story lines in real life. I've been on Taxol for 15 months now, can you believe it?
I can only imagine that you feel anxious but it's good you finally have a plan. I think you will do fine and I am believing this juice will clean up your liver on the double!
Do you know what your dosing schedule will be? What pre-meds you'll get?ETA: I just saw your explanatory post on the liver mets thread, so no need to answer my questions!
I do want to add though... be careful exercising after treatment. You don't want contact pressure or body heat to draw the taxane into the tissues of your feet or hands, in fact you want to take measures to restrict circulation there and keep those tissues cool. I cannot recommend frozen gel socks and mitts highly enough. I skipped them a time or two and got hit with some neuropathy, so I NEVER forget anymore.
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interesting lulubee. Hmmm. Thanks.
I know you will find some way to make me laugh about this. A very rare talent you have.
Hi Ilimae. I wish I weren't here. I wish you weren't here. But as it is what it is I am grateful for your welcome and company. The transition to cancer patient on chemo has not been going well.
Z
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Lulubee - I think the dose is 70% of 100mg/m2 weekly but I don't know what that translates into actual miligrams from me.They are going very low with me because of the extent of the mets and the fact that abraxane is metabolized in the liver. No pre-meds.
What is your dose and schedule and premeds?
>Z<
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Well, Z, I don't know if Abraxane and Taxol are comparable in terms of milligrams, but here goes: I started at 90 mg/m2. Did that for 9 months. Then in September I had to have a 20% dose reduction due to neuropathy creeping up on me. So rounding the numbers a bit, I think I'm getting 70 mg now. I'll double check on Monday.
My schedule for Taxol is days 1, 8 and 15 of a 28-day cycle (IOW, three Mondays on, 4th Monday off). As for pre-meds, I've been getting dex, Zantac, and diphenhydramine (Benadryl). The Benadryl makes me super stupid and then the dex kicks in and makes me pseudo-brilliant and really great at making grandiose plans which never come to fruition because wherever there are steroids there's a steroid crash following right along behind. I negotiated the steroid and the Benadryl down to a half-dose lately, which has given my life new meaning, so Monday I'm going to get sassy with my MO and see if I can refuse the Benadryl entirely. I don't metabolize all this extra stuff well due to my MTHFR mutation. Which, btw, have you ever gotten tested for that yet?
I'll try to start winding up some inappropriate chemo humor for you. Better still, maybe I'll save it all up for my next trip to Santa Fe. I am discovering I am much funnier when there are empty margarita glasses in the vicinity.
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Hello Everyone, Is anyone taking supplements to try to ward off neuropathy? My oncologist told me to start taking B6 and alpha lipoic acid. I have had 7 treatments and no sign of neuropathy at this time. Is anyone wearing cooling socks and mitts? I also find this an easy chemo to handle other than the fatigue and weakness in my legs.
I hope everyone is getting good results on this treatment.
Z, I will be thinking about you on Monday! You got this!
Robin
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Lulubee, Robin - Thanks. Couldn't have better company than the all folks on this thread.
Lulubee - Your dose is on the low side for taxol, much like mine is for abraxane. I think this is a good thing. I believe there are issues with the steroids and premeds. These include the side effects you describe but go beyond that. The steroids mess with the immune system, blocking an important ally in beating the cancer back. I am not taking pre-meds on Abraxane. If the taxanes are going to be a lifestyle for us, which they appears to be, consider asking for Abraxane.
At the moment my liver is stressed by wheat grass juice so margaritas are out of the question. We'll improvise as needed when you are in Santa Fe next and laugh about all this. Tell me when you are coming.
Robin - Hi. Any idea what your dose is?
>Z<
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Z Ill be thinking of you on Monday, too. I wish i had been bold enough back in the day to refuse pre meds. Even benadryl messes with my brain. Like Lulubee it makes me stupid and hyper. Who needs that? So I'm glad you wont be taking it.💞
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Z, My dose is 160mg, this is a lower dose than what is recommended for me based on body weight.
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Robin ... Yep. Nice and low ... and effective. I have studied low dose metronomic dosing (low dose chemo over a long period of time), a lot. When it works, it works a long time.
Here's to complaining with you guys about Abraxane side effects, for years ....
>Z<
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Z- want to give you extra support for Monday. At a low dose of A-train without premeds you will do fine! Cold caps are chilly but doable - you are right about the expensive ice, but required to keep caps at constant temperature. You only have 12 sessions of A-train, it will pass quickly. Consider icing feet or hands if you get any neuropathy signs. I personally didn't fast and still lost weight. Please judge for yourself as oncs generally ask us to maintain same weight during chemo. And all the complimentary medicine you tried will help you now. Abscopal effect here we come! What are your baseline TMs now - or will they remeasure on Monday? Stay strong..
(()) Claire in your corner
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Z, I'm in a clinical trial so I'm not sure if Abraxane is a real option, but that is on my list of bargaining chips for Monday, when I will ask to skip premeds from now on.
No immediate plans to visit SF but we burned some piñon wood in the chiminea last night and now I am fervently pining for Maria's and Cafe Pasqual's again. I can't go too long without my fix.
So from one wheatgrass juice fan to another... please do tell me what is up with it taxing your liver! Is this a thing?? Because if so, I need to know asap as I have a freezer drawer full of the stuff and also a liver that has failed in the past and must be treated like royalty.
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Claire - thanks. MO is thinking 12 sessions which I guess is 4 months (3weeks on, one week off). However, if Abraxane works, people do these chemos long term. It is a strategy called Low Dose Metronomic Dosing. There is a lady on inspire who has been rotating through chemos weekly at a low dose for 7 years. I thought I couldn't convince the local docs to give me such a low dose, but I've found that the dose she is getting is very close to the standard weekly dose. MO is fine dropping a bit from there. Depending on how things go, he'll probably be fine continuing treatment longer than 4 months.
This leaves me confused confused about what I am doing. I got the cold caps thinking this would be 3 months of taxotere. Then I looked into taxotere vs abraxane and pre-meds and efficacy. I nudged the local onc to abraxane, so now we are at 4 months of Abraxane. Then, after chatting with the lady on Inspire (Laura) I realized that my dosing similar to the treatment she's been getting for 7!?! with great success. It's a treatment I have always wanted to do. I am thinking that if this works, I'll get the local mo to keep me going until it fails. Lulubee has been on taxol for 15 months!!!!
Of course, Laura kissed her hair goodbye a long time ago to work this strategy with a Seattle doctor who developed it. I am not going to be doing cold caps for 7 years. It's weird to think that, if I am lucky then I'll be shopping for wigs. What counts for good luck these days is strange. Cold caps arrived today. I guess I will get started with the cold caps and see how things go.
Fasting started today as well and I am doing okay with it. There is evidence that fasting will protect and stimulate the immune system. Yes, maybe we'll see the immune response kick in as the cancer recedes. Fasting should also protect all the normal cells and allow me to stay on this regime longer, if it works. I am pretty confident I can make up the calories between fasts. I don't mean to brag but gaining weight is kinda a talent of mine.
Lulubee - I am super sensitive about what I can and cannot eat. I assume it is my stressed liver sending signals. Wheat grass juice has not worked for a bit, but what my body will accept changes all the time right now.
>Z<
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I haven't been on for a while and thought I signed up on this thread. Some familiar names here. I have been on Abraxane since January, 2018. Good Morning Z and to all the strong women in MBC land. I just wanted to let you know that Abraxane is very doable. I get my treatments on Friday (every 3 weeks) and don't feel any side effects until Monday and Tuesday - some bone aches and weakness - then they are gone. i still work 40 hours/week. Taxol was started 3/2017 and after 3 months put me in remission with over 60 bone mets, liver, lung and neck lymph node mets finished. Taxol was doable also except with the neuropathy still present in my fingers and feet. I tried acupuncture with the neuropathy, but it didn't work. I am using Gabapentin currently. December scan showed new mets T11 and left sacrum. I did the Radiation Therapy using the Mask (lots of Valium) on both areas. I started Abraxane/Neulasta January 2018 and lost my 1.5 inches of hair in two weeks. My next scan March 2nd, (every 3 months) new mets showed up again on my spine and right sacrum. My oncologist added Olaparib to the Abraxane in March 2018. I take Olaparib twice per day and Abraxane every 3 weeks. My side effects are nausea all the time with no relief. I checked the Olaparib site and if I can get through 2 months, the nausea should subside. Waiting for that. You are so strong and I have no doubt that you will be successful on this new regime. I did watch the video on fasting that you posted and am interested in how all of that works. When you fast - you take nothing? Good luck with the cold caps, sounds like people have had great success. I haven't seen my eyebrows since 2007 and lost my hair for the 3rd time. I wear ball caps to work. I have quite a collection now. Good luck today and will be thinking about you. Back to the never ending snow.Lisa
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Z and all, MO agreed to drop the dex this morning! I'm thrilled. We'll see how it goes, but I'm expecting to feel better and hopefully lose this ugly perioral dermatitis rash that is raging on my face. Hard to fake the glamor with two whopping parenthesis of big red, scaly bumps running from your nose to your chin. It's always something!
Robin, I've had some neuropathy that required a dose reduction, but it's much improved now. I have cold mitts and socks that I take in a small cooler. I put them on about 10 minutes before the chemo drip starts. As for your supplement question, I do take B complex. I have not been sure if superpower antioxidants like ALA are okay with chemo, so it's interesting to know that your MO says it's a go. ALA is fantastic stuff. I could NOT tolerate the gabapentin that was prescribed when the neuropathy was ascending, and frankly the side effect profile of the drug scared me. Digging around online (as we do), I learned that the supplement GABA helps some patients even more than gabapentin with neuropathy, and with zero side effects. Bonus: it eases anxiety powerfully without narcotics. Win-win. My MO was completely on-board with me taking it. I now take GABA Calm by Source Naturals (Amazon), 2 at bedtime and 1 before chemo. I could tell a difference in my hands and feet within a week when I started taking it.
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Lulubee, Thank you for the information. My oncologist has said and done many things that are questionable. I don't like taking a lot of supplements anyway. Going to send this brand new bottle back to amazon. I will also research tonight and ask her why she would recommend such a thing. I will look into GABA.
Thanks again!
Robin
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Lulubee, interesting about Gabapentin. I have felt that it doesn’t really help me and I haven’t had any side effects so I think I will stop using it. I am going to look into GABA also and will read Robin’s post on ALA. I have my dose of Abraxane on Friday and see about what he thinks about Dex. I’m also taking Super B complex, multi vitamin and my MD wants me to take Folic Acid.Always, lots of information being passed along that helps. Thanks again..Lisa
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lulubee, Can you tell me what you found in your research about taking ALA while on chemo? I always heard antioxidants protect cells good and bad. Do you know if this is true? Anyway I stopped it today, better safe than sorry.
thanks,
Robin
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