Abraxane
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Swess, your week 4 issues could be decadron withdrawal. Steroid withdrawal is always a beast and cannot be avoided, even if you only take the steroid for one day per week. I got it as a pre-med with my chemo for 15 months. It gave me the energy boost on day 2 like you describe (and also kept me awake at night), but on day 3 it made me ache all over and feel kind of like I was coming down with flu. There's always a bill to pay with steroids and it gets bigger the longer you take them.
I opted to drop them five weeks ago, and I feel so much better overall that I am now seriously peeved that I was persuaded to take them for so long. I can sleep, I can finally get my rings on again, and my face is not puffy.
Watch your immune system if you continue to take them. I knew it was time to drop them when I started getting sick with every cootie that walked past me and my face broke out in a perioral rash that would not heal. It's almost gone now.
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Welcome Tennille76,
I have had 8 treatments of Abraxane and the one thing I am most excited about is no nausea!!! I have muscle aches but I will take aleeve when it gets bad. The fatigue is my biggest complaint and my legs feel so weak. It is working on my liver mets very well and my TM's have plummeted from 625 to 89.
How were the side effects on Eribulin? That may be my next treatment.
Robin
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Lulu, thanks for that information. I didn’t know that, but will definitely be mindful of it now
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So, my hair is falling out. No surprise. But I’m curious... when will my leg hair start to go? Im ready for it to go. I mean, I need something to look forward to, right?? 😉
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Swess - all your hair will go, underarms, legs and a brazilian, just give it some more time. Sadly it includes most of your eyebrows and lashes too. Mine still have grown back that much since I finished 5 1/2 mos in January. I miss my eyelashes! Robin- so proud of you, my TMs went down to 92. Hang in there and hit Vegas soon! Several of us have moved on to other meds, so please keep sharing good info.
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Swess - The hardest thing is that I can't predict when I will feel okay. I feel good most of the time and then whammo I am in the supermarket leaning on my cart. It's really hard since, not living (ie. not going to supermarket) is a dangerous as anything. Take care, but get out and live. Right there with ya…
My hair is starting to fall out too!!!! We are on the exact same timeline. Too funny. I had a panic attack at the thought of it coming into to treatment. Now, I am not really sure I care.
Welcome Tennille. Just finished my first course of Abraxane. I declined pre-meds for nausea or steroids. Studies have shown steroids raise glucose levels and counter the effect of chemo … take care with steroids. There are a host of issues.
Some mouth sores, rising resting heart rate, rashes, sun sensitivity, dry skin. drop in WBCs. In truth, I really have to look for the side effects. Not effecting QOL. Hair loss beginning despite cold caps, but I exercise during the IV and that can negate the effect of the caps.
I am fasting before and after IV per a specific protocol intended to reduce side effects. I credit that for the lack of nausea and bone pain, which I understand is common. I exercise during and after IV to increase dose to my liver. Not everyone's experience but this has been an easy treatment plan for me. Knock on wood. The effects are cumulative and SE's can start or get worse with time.
Had to do Neulasta on my week off to get WBCs up and THAT was major bone pain and fatigue, headaches. Not doing full dose again, ever, so help me god.
Please keep us posted about what it is like for YOU, what YOUR onc says, what YOU decide. We learn so much from each other… and then we do what feel is right for ourselves.
Swess and I seem to have started together. It's very interesting to compare notes. Like Swess, there are issues but the net effect of Abraxane has been that I feel good.
>Z<
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Thanks for all the info guys. Will keep you updated. Robin, Eribulin was a pretty easy chemo. I will let you know the comparison once I start Abraxane on Monday.
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Of the five chemos I had for BC, Abraxane was the easiest for me. They did not make me take steroids with it, just benadryl. 💞
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Z! I’ve missed you! I knew we were on the same schedule, and I love hearing that overall you feel good too. It’s nice to have so many good days; i sometimes forget how good I feel normally when I’m having a bad day. I guess that’s normal though.
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(repeated on the liver thread)
My PET scan Wednesday came back with no evidence of active disease (NEAD) from eyes to thighs after one cycle of Abraxane. The PET scan shows no structure therefore I don't know the extent of the remaining dead or inactive mets. Immediately prior to starting Abraxane I had 60% liver involvement. At this point, all we can say about tumor load is that the liver is significantly reduced in size, but still enlarged and whatever is in there is napping or dead. We can see that the acetites are gone.
I am now wondering about staying on Abraxane. If I don't have any abnormally fast growing cells, is chemo the right tool for the job? It seems like the new challenge is the regeneration of the liver and so the growing cells are the good cells. Do I want Abraxane attacking them? I am wondering whether to switch to a treatment with a different mode of action, one that doesn't attack growing cells. It seems like the way to go, although the options are unclear. Pondering this.
Still at Mayo, on the hunt for answers about brain lesion.
Thank you all for your prayers and thoughts. They appear to have been answered. Very tired. Probably the damn Neulasta. However, resting seems to be in order given the armageddon going on in my liver. Hanging out in my old fashioned boarding house room ($35 per day!) until my appointment with neurologist at 3:30.
>Z<
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Great PET results Z! This is the first I’m hearing about a brain lesion though, please do keep us posted. If it is a BC met to the brain, many of us have had successful treatment there too with SRS.
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Hi everyone - after a short delay, resumed Abraxane (50% of recommended dosage because of how my body responds to meds) this past Tuesday. Today, Sunday, I'm experiencing laryngitis, no pain or discomfort. I do have a voice, it's just not the strong version. Has anyone experienced something similar? I'm hoping this really due to allergies, all the trees in my neck of the woods bloomed overnight, I just haven't experienced this before. Thanks! - Scout
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I've had a sore through the whole time I was on Abraxane. It was strep at the beginning, but now that has resolved with anti-biotics. I do need to get that re-tested, but I am assuming allergies.
>Z<
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My hair is officially over. After completing first cycle of one month, probably about 2/3 has fallen out. I still have quite a bit. I have THICK hair. But the trend being what it is, I am getting it cut way back tomorrow. I am tired of hair everywhere. I have to brush out all the loose hair and then vacuum thoroughly twice a day. Crazy.
Went to the chemo hair store at Mayo (It's called Flower of Hope, but WTF is that?) picked out three great wigs and sent pics to the family to vote on the winner. I was really surprised how good they look. Of course they chose the one that looked the most like my old hair. Kinda boring but I get it and that will help with the illusion.
Also got four bamboo hair caps and a sleeping cap. Tomorrow I will order the Mom Hair Wig when I get my hair cut. I'm feeling pretty set. The idea of losing my hair is so traumatic, but now as I reach the end of the process, I am fine with this.
Z
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Had my first Abraxane infusion yesterday. So far so good.
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Aftera miserable week of hair falling out in grotesque amounts, my daughters and best friend shaved it Saturday night. We had some fun with it though. We started with bangs, then cut a mullet before transitioning to an old fashioned bowl cut, shaved everything except a ponytail on top of head and finally a shaved head. At least we laughed a lot.
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Swess - Funny. Lady at Flower of Hope at Mayo did the obligatory mullet with me too, sent pictures to kids. Also send a couple of poses of me in wig looking like an 80's rock star, sort of Rick Perry like.
I've got no hair anymore, I am good. Hope you are too. Sounds like a fun time with your family. For me, I was grateful to be away from home with this nice lady at Flower of Hope. Also nice to walk this walk with you and have someone to compare notes with. All the best. Hope you are well.
>Z<
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Z-
The thought of losing my hair was devastating to me to and I put it off until I couldn't anymore. I bought 2 wigs before it all fell out, so it made the transition easy. After it's all said and done, I am also fine with this because I love my wig and get so many compliments on my hair and no one knows its a wig, because when I tell them they are shocked. I also bought some bamboo head covers that are so awesome. I will take off my wig and put on a head cover and it is heaven on my head.
Great PET results today.....COMPLETE RESPONSE>>>NO uptake in the liver at all!! All tumors are dead or sleeping and I couldn't be happier. I had a few small lung mets that completely resolved. The only thing that lit up was a bone met, and the SUV level has dropped from 4.5 to 2.1, so that badboy is on it's way out. The only worry I have is all the scar tissue. I will have more answers when I meet with the liver specialist on June 6th. My oncologist doesn't have a clue to any of my questions. I will be switching to Navelbine in June when I return from my trip. I hoping this chemo can keep the beast away for a long time.
Z, are you going to continue with Abraxane for awhile?
Don't give up ladies, when this chemo works...it works!!
Robin
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YAAAHOOO, rpoole!!!!!!!
I am off Abraxane while they diagnose a 2cm lesion in my brain. So far that has amounted to a two week break rather than a one week break. Meeting with neuro oncologist tomorrow. Hoping that all is well and I can start a second cycle of Abraxane this coming Monday. How long I stay on, what the regime will be, whether I will need a break to treat the brain lesion? All these things are up in the air.
At one point, I was inclined to do long term low dose 3 week on/ one week off regime for as long as it works. Watching your experience, if i do it, I am going to ask for longer breaks or more time between doses. My gut is that the liver needs more time to regenerate and the "low dose" may be still too high. Will be consulting with you for sure.
I am just so happy with the results you got. What a load off the mind.
I slept all day today. It wasn't that I did not sleep last night ... the fatigue came out of nowhere. I think I've been stressed dealing with these brain lesion diagnostics and once I completed the final diagnostic this morning (spinal tap) my mind and body just let go. I certainly do not realize how much stress I carry with me when dealing with all these unknowns and treatments and diagnostics. I am hoping that the load is off your mind for a very long time and your summer is fantastic.
>Z<
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Thank you Z! Some of the stress is off, but still stressing about what treatment I should do since liver has so much scar tissue. The stress never ends with this dreadful disease.
You have been through a lot and you need to rest. I have been off treatment for a month and feel great finally. But had a dose of Abraxane on Monday, so I am waiting for the fatigue to hit. I think low dose Abraxane and fewer treatments is a great idea for you.
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I am doing pretty well on Abraxane. I am doing 3 weeks on, 1 week off. I had the first IV of my second cycle last week, heading in for my second IV of the second cycle tomorrow. A little fatigue, total hair loss, leg cramping but it's been okay so far. In the last two days, I've developed a new rash on my torso. I can't really see much of a rash, but my skin got itchy, now it feels like I burned myself. Curious if this is abraxane and if so, what to do about it. Various lotions are not doing much so far.
>Z<
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Feeling happy and excited for those of you who reached NED because of Abraxane!
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I feel a bit silly having shaved my head. The hair loss had gotten out of control, falling out in clumps, and it was miserable. But, my hair has been growing back since day 1. Maybe I should’ve just dealt with it. Too little too late now.
Dr prescribed Gabapentin for that severe pain I’ve been experiencing. I filled the rx, but haven’t started using it yet. I don’t want to take even more meds that cause weight gain. I currently favor Buddha, except I’m porcelain white.
I still have the muscle and joint pain, but it’s been bearable the last week or so. I’m no longer afraid to take pain meds when I need it.And the underarm pain returned a few days ago. But even better than that... I’m pretty sure I’ve got Lymphedema. My entire arm is pretty swollen. Love these little gifts that cancer keeps giving.
I’m learning that I can do one task at a time. Literally. I must rest after every little task. On one hand I think it’s got a lot to do with my weight. I’m huge. On the other hand, it makes me question if the abraxane is working. For some reason I expected to feel better if the chemo works. The pain hasn’t subsided. The fatigue hasn’t subsided. But my hair is regrowing and my body hair never fell out. Any opinion on whether this can mean the chemo is ineffective?
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i start Abraxane Monday morning. It is my last chemo drug I have available for me. I hope it works. I was on Doxil until last thursday. I need information on Abraxane like side effects. I can't take Zofran but I do have Compazine. Will I lose my hair?-goose14
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Goose14, I lost enough hair within the first few weekly treatments that had my husband buzz it, eventually I went totally bald but I didn’t mind much, I looked kinda badass, lol. Other SE’s were bone pain around the 4th day (took tramadol) , D (1 Imodium fixed it) on the 6th day and food tasted terrible 3 days per week (lost 25lbs) but I could afford to lose it. Other than that I found it fairly easy, even did my first 5k and worked except for infusion day. It worked well for me, good luck 😀
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Thank you for your experience! I hope you are doing well.
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Had CT yesterday. Abraxane failed. Tumor grew. It’s on to halaven.
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Me too-Abraxane stopped working, too bad, it wasn't hard to tolerate. Started Eribulin (Havalen) and Pembrolizumab (Keytruda) clinical trial today.
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SheliaMarie and KPW3, I'm sorry to hear that Abraxane has failed you. Did you do it long enough? I have been on Abraxane/Avastin since January and March had new bone mets on my spine and right hip. This morning's PET/CT scan showed that my March mets have gone NED and TM have finally dropped to almost normal. I seem to have to be on IV chemo for at least 6 months hence staying the course with Abraxane/Avastin. Now in March, Olaparib was added (FDA approved Ovarian Cancer Drug for Breast Cancer). So was it the Abraxane/Avastin or the Olaparib or the combination of all 3? Not sure but we stopped Abraxane today as the neuropathy is to much for me to take anymore - almost 2 years of pain. So hopefully, my hands and feet will heal. I still will do the Abraxane, just every other month. It will be interesting to see if any of those buggers come back. Radiation in January took care of the left hip and cervical spine mets. Last year it took Taxol 6 months to get rid of over 60 bone including liver, lung and neck lymph node mets. For some reason - 6 months - however scary to wait. I wish you the best. Z - how are you doing with Mayo? The offer is still there for you and your family to use the cabin during your treatment. Just let me know.
Goose14 - lost my hair right away - 3rd time and still can't taste anything on Abraxane. Just be careful of the neuropathy. My MD said if it lasts close to two years, the nerve damage can be permanent, hence why I am going off it for a while. Have the usual nausea/vomiting, diarrhea and the usual fatigue. Not to bad compared to some of the other chemo's that I have taken. Take care and thinking of everybody......Lisa
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Lisa, I was also on Abraxane and Avastin from Dec-May. In March the PET scan showed one 5mm spot in liver (that had been 2cm) left, the next PET in May showed several, tiny liver mets. My MO's plan was to do what it sounds like you are doing-decreasing the Abraxane and staying on the Avastin. I like your MO's thought of adding the Olaparib. I was looking for clinical trials that needed to be second line so we were unable to add/change anything, although I did have to have the Abaraxane dose drop 3 times and held every day 15 due to low ANC. I was getting neuropathy in my fingertips too. I hope you are able to ride this out as long as possible.
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