Abraxane
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Peacock, please know that I and many people on these boards are thinking of you and support you. Those terrible thoughts are in all likelihood lack of sleep, teamed with everything else. Lack of sleep definitely can cause a weird, severe, short-term depression that goes away with a good night's sleep. Try to remind yourself it is not you but the lack of sleep causing you to feel that way. Do you have any Ativan or something that can help you sleep when things get bad? If not, it may be worth asking your MO for a prescription.
LA, I also read about a study that said there was a slight benefit with weekly doses of Abraxane (and Taxol). . . and read other studies that the results are the same. Interestingly, studies have found the opposite with Taxotere. It has shown a slight benefit with the every 3-week dose versus weekly. One never knows for sure whether these types of mixed results are due to one study having a flaw or due to the luck of the candidate pool in the study which will never be exactly the same. I would love to have a definitive answer to this! British Isles cruise in May sounds wonderful! It is always nice to have something to look forward to. I am so inspired by your travel fabulous plans!
Artist, I am tolerating Abraxane fine for now. Not sure about how I will feel after a few more doses. The neuropathy and general fatigue seem to be increasing as each week passes. Also, sometimes I feel like my legs might just give out for no reason (like a short circuit). It hasn't happened yet though. I hope you can get your neuropathy to am manageable level. I do see people on these boards who use Abraxane and other IV chemos for a short period to tame things, switch to something else and then return to the same IV chemo when things flare up again. I recall seeing someone on this thread who had done that. I can't remember who. This seems to be done more with the taxanes than other chemos for some reason.
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Update: so saw dr on Monday she was not happy I tapered my prednidone on my own so fast and wanted me back on 80mg I said no I don't want that Atomic bomb anymore but i agreed to 10 mg and she wants me at 20mg. Will see. She was able to order a rush parascentesis at another hospital where a radiologist stayed late for me and he got about 650 ml out enough this time for full pathology. I was disappointed it was not more because I was still SO uncomfortable and couldn't breathe eat or void bladder very well. (Chest X-ray showed my left lung at half capacity because of pressure upwards from my diagram)
So...I called yesterday and BEGGED for another tap and she basically said no she wanted me to have chemotherapy but caved because I agreed to do chemo tomorrow. I really didn't want chemo without this fluid problem getting resolved. So today a different interventional radiologist was a little more curious near the midline where they don't like to tap but I pleaded with him and you know what? He was able to get today???? 2liters!!!!!! 2 gawd dang liters that filled two bottles in about 2 minutes... I've been struggling with in my body for a month. I cried no literally sobbed as I was thanking the radiologist and ultrasound tech.. He was even shocked it was so much, he figured a liter max. Oh and i finally got sleep after 7 days ..,it took two Ativan and 4 benedryl over the span of last night but I finally slept thank god 4,.straight blessed hours and two other hours here and there. And a real nap today. My blood pressure has now dropped from 150/90 to 122/70. Wow. And yes Chemo tomorrow abraxane #2 I'm ready dammit! may I kill this crap. I'm so glad I'm even alive to write this post today I've been in such a bad place I finally have a little hope again thank you for your support and kindness ladies ..
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Peacock girl I’m so glad you got relief from the fluid in your lungs. Here’s hoping Abraxane works wonders!
Aurora
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Minor setback the ascites fluid from Monday's sample came back malignant have to say I'm really disappointed but not surprised because of the recent neck rash TNBC findings. The one positive piece is one dose of abraxane last week quieted the angry nodes in my gut completely so I have to hope the chemo knocked some cancer down, like it did to the neck rash. The other interesting piece of the puzzle is that all these scans kept saying I had minor to moderate ascites but yet it wasn't in purely visible areas that could be easily drained until this week so what I think happened is the Abraxane stopped the inflammation around all the little pockets and made it all drain/pool down by gravity where they were able to pull off 2.7 liters since Monday. I'm so glad they got it out. Here's hoping today's dose of abraxane keeps working well and keeps additional ascites from forming. That is my wish.
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That's my wish for you too, Peacockgirl! Artist, I hope you get to feeling better and stronger!
I just had Abraxane treatment #6 and just got my CEA. Best number in a very long time (and better than results during Ibrance, Faslodex and Xeloda). Is this my long-term drug? Blood counts were all acceptable too. PET scheduled for October 19. It will surely confirm this good news. CEA trends have been quite accurate for me for over 3 years.
Praying everyone responds well to this chemo !
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Peacock, I am glad you had some relief with the draining and managing to get in a little sleep. This Abraxane should give those malignant ascites a good wacking.
Kaption, excellent news on your CEA! I hear so many positive stories of Abraxane doing good things for people for good chunks of time.
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I need to stay off dr google malignant ascites is scary stuff I hold on to your positive experiences here for sure!!
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I need to stay off dr google malignant ascites is scary stuff I hold on to your positive experiences here for sure!!
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Peacock, I can totally relate to what a miserable existence having fluid buildup is. I am so glad they finally got you tapped out. Do they do an ultrasound of your whole trunk when you go in? There is NO excuse whatsoever for letting you stay that miserably uncomfortable. Hope the Abraxane kills it off.
I am so nervous that this neuropathy is going to make me get off this drug which has helped the ascites and Tm's....
JFL, I had the same thing happen regarding a short circuit and actually fell. I'm thinking I may have to switch as I skipped a week again and not much improvement on the neuropathy.
kaption, great news on the CEA for sure. Have you had any neuropathy? I hear the longer you go on the more likely and chronic it gets. YIKES!
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Artist, I certainly hope Abraxane is helping and you can stay on it. The neuropathy sounds very scary- especially the fall.
On my reduced dosage I've had almost no se. Hair is gone and some fatigue. Almost no nausea. No neuropathy, yet. White counts and neutrophils are barely acceptable, but haven't skipped a treatment since the dosage reduction. I was nervous about the lack of se (is it working?) but the TMs made me feel better.
I'm hopeful, but still skeptical because I had a wonderful initial response to Xeloda too. Then it quickly fizzled out. I think my cancer cells are quite smart and tricky. Fortunately, so far, they are relatively slow growing.
Come on, Abraxane! Work FOR us!
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Artist on Monday when they did the first tap they had to beg a radiologist to stay late in the day for me to do a paracentesis and he basically went for the easiest and quickest route which was about a 700 mill pocket inside my right hip bone area. The ultrasound tech basically only looked at the left and right inside of my hip they did not really look anywhere else around my abdomen. I think my main problem is I had inflammation all riddled throughout my mesrntery so I really only had these tiny little pockets, And frankly I couldn't understand it because I had CTs and MRI and all these other scans the doctors kept saying I had moderate ascites but nobody was doing anything about it to drain it there wasn't a big pool to draw from until I had the one Abraxane treatment which stopped all of the inflaming nodes almost overnight. So then gravity allowed all that fluid to come out of all those areas and pool down by my Bladder. So on Wednesday when I got to get another paracentesis with the radiologist who wasn't eager to rush home at the end of the day he was a little bit more curious and found that big pocket near the midline around my Bladder. Thank god, for him.
Oh and I finally got some sleep last night my steroids are down from 10 to 5 mg today which should help immensely in that department and it should also help get all of this trapped fluid it's in my fat and skin on the outside of my body, now I guess to address my left lung pleural effusion I've basically got one sleeping position and I think it needs to be tapped too. All of the stuff that is happened to me in 30 days is absolutely ridiculous I went from almost normal to an almost bedridden invalid. I did read that lymph ascites is made up of a lot of protein and a lot of times that's how you muscle waste so quicklyI guess that makes sense. But my goodness as much fluid that was in me I don't see how my body ever would've cleared that on it's own
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OMG I demanded my onco order interventional radiology today because I couldn't breathe and they drained 1.6 liters of pleural effusion fluid off my left lung today I asked my dr to please order it I would not have made it thru the weekend at home. When it reinflated I thought I was going to die! I coughed up so much liquid that had been trapped in my lung it probably was like being waterboarded. It took almost an hour to take a breath without coughing but the relief is immense finally. Dr will be adding carboplatinum chemo to the abraxane. The ascites path came back malignant I'm pretty sure the lung will too. This has been such a crazy nightmare ....despite having chemo yesterday I feel better than I have in two weeks. Combined with the ascites they removed Monday and weds that makes 4.3 liters of crsppy fluid removed from my body. Any help with carboplatinum ladies
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so sorry I keep repeating myself ladies it's been a hellish week
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Peacock, you can always vent here.
Had my third round yesterday. I have been on Abaxane six weeks now. I hope this stuff is working because it is a lot to go through if it is not!!!
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Good glory Peacock, what an ordeal! I'm glad you got hold of a good Dr. who finally got rid of that fluid. It is sooooo uncomfortable. Glad you are feeling better!
JFL, I pray it is working too as I am feeling like this neuropathy is not going to go away.......Get another infusion tomorrow after a week break again and am so scared I will slide backwards again.
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JFL - how is your hair holding up? When are your next scans? Are your TMs going down? Artist - what about your TMs? Kaption - rooting for you in KS and hoping the A train helps all of us. Peacock - please feel better and get standing orders for draining pleural effusion. I'm having a little tingling in my left foot, told MO and we are watching it as I finish up my next 3 rounds this month. My forearms have a lovely red rash. ugh
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Artist, I hope your infusion went well today.
LA, I get my first PET-CT in 6 weeks. My liver enzymes, alkaline phosphatase and one of my tumor markers (CA 27-29) have gone down a bit. My CA 15-3 is about the same. My hair is hanging in there, but barely. I actually took out my wig this weekend to consider wearing it but decided against it. I look unprofessional at work with the status of my hair right now. I don't care outside of work either way. Is your hair still holding up well on the weekly dose? How are your markers? Does anything help with the rash?
Thinking of the rest of you on this thread.
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LAlady, I’m doing ok. Should have treatment 2 of round 3 on Thursday. Mild neuropathy now. A little more nausea the day after treatment, but can’t really complain overall.
Today I take my DH in for breast surgery. It’s a minor procedure for gynecomastia. It’s very common in older men and almost never cancer. Just blocked ducts caused by hormone changes. Causes some pain. He’ll have the same surgeon who did all my biopsies, lumpectomy and mastectomy. He’s, of course, very nervous. He said, “how do you go through this so calmly all the time?” I told him he’s just a newby
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JFL - I have 80% of my hair, it's short so it's easier for the cold caps to work, but it's getting dry at the ends and I can't dye it until I finish A-train, thus some grey roots near my blondish hair. I wear a hair halo to work, and otherwise wear it au naturel to go shopping, errands or around the house. But weekly cold caps are very cold and expensive, so really hoping my TMs continue going down. #7 will be next Tuesday and I will get my CA 27.29. My TMs dropped in 1/2 at end of 3 sessions. Hoping to do the same after #6. My liver and kidney panel is normal. I am using Miaderm and the occasional benadryl for my rash, but since I am allergic to taxol, this rash will likely hang around until I switch meds. My weight has stabilized, just don't have a great appetite. Smoothies help and of course some ice cream. lol How long are they telling you to stay on Abraxane? Every 3 weeks sounds rough. Kaption - proud of you and hubby getting good treatment and results. Has MO suggested what might be next since you are responding well?
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lalady, My TM's were down on my last lab by half. The big thing was the ascites which have subsided since this TX which is SUCH a relief! My appetite isn't great either though. I have odd bouts of something suddenly sounding good, then eat about half.
JFL, Infusion went OK. Had my steroid high yesterday and got a lot done. Now today have the crash, fatigue and weepy. My hands are almost dead with neuropathy but he keeps saying not to worry??? I have been on a week on week off schedule as I still am using a cane to walk. Still get that sudden "leg going out on me" syndrome so worry about falling. Have been going to my little gym to work on those muscles and going to browse in store with shopping carts just to walk all around....
caption, I'm glad the neuropathy is not hitting you too hard. I hate how my hands/forearms feel. Poor DH, the stress of it all. Can we just get a break in life?
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Artist - I love that your TMs are dropping in 1/2 too! Has your MO suggested what you might take after chemo? Mine thinks Xeloda, but we will see. You might do very well on X after our Ibrance fails, or maybe we are candidates for abemaciclib. Lol on my normal calcium and liver panel. wee~
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Thanks, artist. I certainly hope you get to feeling stronger!
Number 2 of this round tomorrow.
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dr decided not to add carboplatin tomorrow and just take the abraxane dose up to standard (I was on reduced dose for #1 & 2) because it appears to be working so well and because I’m still in heavy recovery mode she didn’t want to make me more sick at this point. I agree I was worrying about it. It’s amazing how last Friday I needed a wheelchair and assistance to walk for the pleural effusion drain and today I’m doing so much better walking on my own but still baby steps each day. Finally off prednisone today such a long taper to get me down off the 100mg they had me at-so horrible prednisone like an atomic bomb in the body I swear. Last Monday I weighed in at 163 and today was 148. Nothing like 4.3 liters of ascites and lung effusion plus total body edema to mask your weight loss and muscle wasting
it’s a long slow climb out of this hole I ended up in but I am determined!!0 -
So glad Abraxane is working so well for you. Ive seen a lot of positive responses here
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lalady, yes my Onc has said Xeloda would be the next step. In a way I look forward to switching as the neuropathy isn't getting much better on Abraxane and it is only supposed to get worse as we go along. It's really wearing me out. What I would give to feel "somewhat" normal for awhile. I've been on every other week schedule, so hope i improve a LOT this week a my daughters wedding weekend is next weekend! Would love to walk around without the can and actually dance with my DH.....
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artist, I hope you can be feeling better for the wedding! SE hit me much harder this week. Saturday was awful. Nausea, fatigue, increasing neuropathy-but not to your level yet. I’m writing this at 1:00am as my sleeping schedule is all messed up. But, nausea is better and I needed to get up and hydrate.
I’ve already been onXeloda, so I don’t know what is next.
Prayers for you being able to enjoy the wedding.
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Thanks kaption, Here I am up at 2 am as well....sleeping all messed up too. Not working has made a mess of that plus general anxiety. About the wedding and all of this hellish crud. My worst day on this med is the 2nd and 3rd day after. But even 5 days later nothing is alleviating. Luckily I haven't experienced much nausea but definite fatigue. I hope you feel better tomorrow and don't have to think about the next Tx for a long time kaption! Go to bed!
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I did go to bed and really slept pretty well. Up at 8am now, going to try breakfast. I did take a nausea pill as soon as I woke up. Going to try to have dinner with our med school granddaughter with DH. But, that seems a bit risky at the moment. We’ll see.
I really hope you got some rest as well. And some relief!
Hope Sunday is better for both of us.
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my neuropathy is getting worse too, I live on Birkenstock anymore.
Scans are stable, had another infusion today and feel ok.
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Ziz and Artist - sorry to hear your neuropathy is getting worse. I feel it a little more in my left foot now, but I wear flats anyway. I will get scans first week of Nov, so 3 weeks of chemo in October + cold caps to go! oy Kaption - hope you got to have a nice dinner out. I am headed for Mexican food tonight. Yum!
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