Abraxane
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Lisa, everything about this diagnosis can be scary. It sucks. I have been on Abraxane - the max dose given once every three weeks - for 5+ months. I have worked full time the entire time and haven't taken a full day off for treatment or recovery on Abraxane (or any other cancer treatment over the last 3 + years). I just schedule the last chemo session of the day and leave work early on Fridays to get my treatment. It isn't for everyone but is doable. Working makes me feel normal and gives me small periods of time where I forget I have cancer. Hang in there. Dark days are inevitable but the hope is that there can be some sunny days in the mix as well.
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Hello, fellow A-train passengers. I've now been through my first full cycle (3 weeks on, 1 week off) and begin my second tomorrow. I have been relieved to find it mostly manageable. I don't know how much of that is related to the fasting I've done each round (for 30-36 hours before the infusion and 20-24 hours after), but I'm hesitant to try any other approach since this things have gone fairly well so far. Still, I really should experiment at least one round. I would LOVE to eat during those hours!
My main SEs have been mild diarrhea and nausea (thank goodness for medical cannabis), a general yuck feeling that's somewhere between a hangover and the stomach flu, and fatigue fatigue fatigue. Also weirdly achy legs and hips at night. Hair started coming out on Day 14, which has been even tougher emotionally than I expected. No signs (yet) of neuropathy. There, too, I don't know if it's just because I've lucked out or because of the cold packs I'm using on my hands and feet during the infusion. But as in the case of fasting, I'm loathe to do anything else at this point. We'll see how round 2 goes.
Lisa, I too have a full-time job. This first round, I was generally able to work for at least a few hours the day after the infusion, and by days 3 and 4 I could work almost a full day. I'm very lucky in two big ways, though: I'm on intermittent FMLA so I can take hours/days off as needed to recover, and I can work from home when needed. I hope you can continue to do what you need - including sufficient rest - while you work, without too much stress. Easier said than done, though! I still stress about work.
We'll see tomorrow if tumor markers have changed. They initially went up, but my MO didn't seem surprised and told me not to worry. I do feel a lot less pain from my extensive bone mets, so I'm hoping that's a good sign. Fingers crossed there too.
I wish everyone the best, and thank you for sharing your experiences and knowledge on this ride.0 -
SusanR, congrats that Abraxane is working for you!
Lalady1, my cousin also finished 6 months of Abraxane + xeloda. She started it in last July with weekly low doses. Things have been working pretty well. Although we don’t see substantial shrinking in CT scans, her TMs significantly dropped (CA 153 dropped from almost 800 to 39). Recently, SEs became more obvious sothat her doctor switched her to letrozole + xeloda for 2 months, but will probably come back to Abraxane later as the A+X combo has been working well. We are planning our vacation to Japan for a week. I like how she’s looking forward to it.
Hope Abraxane works well for everyone!
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I had my second round of abraxane today. My WBC was normal, so after my third infusion he will do all the blood work including tumor markers on my week off. I so hope this pushes all my liver, bone, nodes back. I am so tired of thinking about cancer all the time! You ladies are a God-send. Thank you for being kind to this anxiety-ridden, scared to die ball of nerves!
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Lisa, Abraxane is powerful. I hope it keeps your mets in check for a long time.
I have my infusion tomorrow.
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JFL,
Good luck tomorrow! Do you know roughly how long before abraxane becomes resistant? I am supposed to go to the Outer Banks in June, and I am afraid to pay my share. It is so hard to make plans!!
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Lisa, there have been some on this board who took Abraxane for a long time, even over a year. Results overall are mixed but most seem to get a good response at least for a while, even though most who take it have had multiple prior lines of therapy. Some have to go off it due to side effects. Are you worried about still being on Abraxane and not being able to go due to side effects or because it will interfere with your treatment schedule . . . . or are you worried about not being around? Try to make your trip! If there is any way to book what you can now of refundable portions and hold off a bit on those that are nonrefundable, that might help.
I had my Abraxane today and vomited many times. I have had nausea/some vomiting the last three treatments (but only during treatment). Once the treatment is over, I go home and eat a normal dinner as if nothing happened. I have a pretty strong stomach and typically don't even have nausea problems on drugs that cause a lot of nausea. I have suspected the vomiting is due to the cold caps but really don't know. Having my head squeezed super painfully tight for 3+ hours, freezing cold, with a tight, painful strap under my chin that makes me gag and makes it difficult to even swallow is certainly a contributing factor. However, I am curious if the cumulative effects of Abraxane are part of the issue a swell. I haven't heard of nausea being a common side effect during treatment on Abraxane. And, they give me Zofran beforehand. It is funny, I was about to ask them to stop the Zofran 3 cycles ago because it was unnecessary. Fortunately, I didn't ask because that was the first time I had this problem. Anyone else have nausea/vomiting during treatment?
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I am afraid of not being around. I am paralyzed with fear. I won't even look at my pet scan from two weeks ago. A friend of mine did and the things she told me scared me. I don't know how to be positive or to function. I see a psychiatrist-my doctor said there are other options-but I don't believe him. He told me he would tell me when it was time for hospice. i want a few more years.
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JFL, I was on abraxane last January through May and never had nausea or vomiting. In fact, outside of the once or twice that I’ve had food poisoning, I’ve only ever felt that way from pain. I do recall some sudden bouts of nausea after radiation when my skin was at its worst.
Lisa, it’s so hard to hear the hopelessness in your posts. We can’t simply turn the worry off, I get that. Please take the trip, it’s so nice to have something to look forward to 🙂
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Thank you. I need to be more positive. I do have a question. I find myself weak and shaky when I walk far or do something as simple as taking out the trash. Is that normal?
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Lisa, I’d certainly mention it to your MO or notify the nurse on Monday but I do recall some days where I felt kind of winded and unsteadily during chemo.
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Lisa, I get the weak and wobbly feeling too, and breathing heavily after even mild exertion. I wish I could figure out how much to push that - that is, how much to try to exercise at least some but not too much. I worry I'm giving in too much to the fatigue and therefore making it worse. Having icy winter outside doesn't help.
How do other people handle that balance, and what kinds of exercise do you do while on chemo in winter?
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I agree. I went to the grocery store yesterday with a friend and got through it pushing a cart, but I had to sit down after I checked out. I wonder if there is any supplement. I need to go back to work as my sick days will be done the end of May. My onc okayed water aerobics, but I am scared I will not be able to get through a class arrgghhh. Tomorrow I am starting acupuncture.
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Hi Lisa - I finished 5 1/2 months of A-train super tired. Now on xeloda and still tired. I bought a lazy boy chair to rest my feet - that helps. I push the shopping cart in the store to help my balance too. Just back from Home Depot - lol. You can do this and take your trip. However, if you don't have a will/trust, now is a good time to get those things in order. It will help you remain calm and help your family. I updated all of my house/will/trust over a year ago, so one less thing to think about when I travel. Stay strong. I take IV C which helps me.
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Lisa/Seagan, pushing the cart is a great trick! I find that very helpful at the grocery store. I hadn't thought of it but remember reading that Artistatheart did that and tried it myself. Sublingual Vitamin B complex works really well for me. I don't know if it helps with fatigue but it helps me big time with the neuropathy. I started off taking it on really bad days, then every few days and now basically take it every day. I didn't want to take it that much but it makes such a huge difference, I need it to maintain my ability to walk, honestly.
I have heard that exercising helps with fatigue and neuropathy. It seems to help for me but it is hard to know to what extent. I get out of breath very easily - sometimes, from merely following my son across the living room - but I try to barrel through it. I don't exercise as much as I did pre-Abraxane or as often but do try to do what I can, am pretty active and take the stairs at work (even if I have to stop and take a break or two on the way up to my office). I also walk and mix some running into the walks here and there on the weekends - walk quarter mile, run quarter mile, etc. I feel very uncoordinated when I run and hope I don't fall over sometimes but try to remind myself that it is helping keep the neuropathy manageable. Lately, I have been walking/running pushing my son in the running stroller. The one thing I notice is that my ability to recover each night is less flexible than usual - I don't run and usually don't even walk in the first 5 or so days after chemo (I am on the less common 1 Abraxane every 3 weeks schedule). I made the mistake of trying to run the day or two after chemo in the beginning (before the side effects kicked in) and the running was fine while I did it but I would be punished the few days afterward, as my body couldn't handle the chemo downward spiral days 2-5 and the running recovery at the same time. So long as I don't overdo it, I definitely feel better when I can manage some exercise.
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Can abraxane help with lymph nodes?
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I went to get my third abraxane today and my immune system is a mess. My white blood cells are so low. So no chemo. The nurse said the chemo is working just can't tell the difference between good and bad cells. Is she full of crap? I have never had this happen to me before. I dont know what to think.
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Lisa, I’m not sure what your nurse meant or was referring to exactly but I have heard that the tumor markers tests can sometimes fluctuate up even when treatment is working because the test measures the cancer cells in the blood but cannot tell live from dead/dying cells. I have not confirmed this with my MO personally but perhaps this is what the nurse is talking about?
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She was referring to my low WBC. I have not had my TM's checked in awhile. My doctor is changing my protocol to two weeks on abraxane and one week off. I am concerned I won't get enough chemo.
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Oh, ok. Well, if it makes you feel any better, my does was reduced 20% due to the onset of neuropathy in my fingertips and the abraxane still worked very well.
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I am sad to report that Aurora passed away today. Her daughter sent me the news in a PM and asked that I post to Aurora's favorite threads. I will miss Aurora, but I know she is at peace and free from pain.
Hugs and prayers from, Lynne
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For Aurora
Thank you 50's for letting us know
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Blessings for sweet Aurora. Sad day.
Lisa, my WBC dips but returns to normal on the every 3-week power dosing schedule. Maybe weekly doesn’t give enough time for WBCs to recover, despite its lower dose. Are you sick with a cold/flu or similar bug?
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No, I am not sick.
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Thank you 50's for update on Aurora - so sorry, she was a sweet lady and very brave. A-train is not for everyone. I am on x now and doing ok, but I have 3 weeks of dura rads now that I certainly didn't plan on after 5 1/2 mos on A-train. JFL you are a super star! Lisa - you are strong - talk to onc about xeloda if Abraxane is tanking you and/or try the 2 weeks on/one week off program and review your next TM. Lots of meds in your HER+ arsenal. PM as needed. I am off the boards for a while during rads. Stay strong ladies!
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Hi all. I hope everyone is hanging in there this week. I a cross-posting this, which I just posted on the liver mets thread. I had a PET on Saturday and my DH pulled the report today. At least one area, maybe several, looked slightly larger but the SUV on everything in my liver is a bit down from my last PET 3 months ago. I don't know what to make of the results. Over the last 3 years, progression has always been lead by increased SUV . . . . not sure what my MO will do about Abraxane. I suspect he will want to move on. My appointment is in a week and a half. I should probably call him beforehand so he can think about whether he wants to keep me on Abraxane or not. I don't want to show up for treatment and then to be told we need to switch and need more time to think about next step. At any rate, now is probably time to do Y90. Feeling down.
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Thanks SusanR. My first round went well with hardly any side effects. I still have the neuropathy from Xeloda so no change there. I have started 300 mg. of Gabapentin. Apparently, supposed to work with neuropathy. I take two at night. Maybe some slight relief. Lisajo6 - with my first and second round, my MD is having me do Neulasta to boost my white blood cell count. I wear the device for 27 hours then the medicine is delivered. I have never had an issue with my labs with all the different chemos. My MD has me doing this to see if it will keep me healthy. So maybe you could check with your MD? My second round was rough for about 1 week with side effects, but still having some issues with the radiation side effects. I have my PET/CT scan on the 2nd, obviously hoping the radiation worked and the chemo is working. My CA 27/29 score came down 22 points so going in the right direction. My MD does a fast read on the PET/CT scan and I get the results 3 hours later when I meet with my MD. I will then do my 3rd round of Abraxane. I am hoping the side effects won't last a week. That was brutal, luckily I was able to work from home for a couple of days. JFL - does your MD use CA 27/29 scoring? My MD goes off that - when those numbers increase, we know something is cooking. My liver mets shrunk with the Taxol,but then the little buggers showed up on my T1 and sacrum, hence the radiation. It's interesting how different MD's are with their treatments. I hope you get some answers. Stay strong and keep fighting. I a hoping everybody is staying healthy while trying to stay away from people with this deadly flu. Good luck everybody!
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for Aurora0
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My white blood counts bounced back to normal, and I was able to get herceptin and abraxane today. He did lower the dose and I will do three weeks on and one off. Tomorrow I get my liver panel results. Of course, I am worried. I don't know if two treatments of abraxane started working on the mets or not.
Anything I can do to help with my anemia?
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Lisajo06 - did you check with your MD about Neulasta? It has helped me. Lis
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