Abraxane
Comments
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JFL I'm doing every two weeks with TMs dropping.
Aurora
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I had Abraxane weekly (every Monday) and worked the remainder of the week. After my terrible reactions to taxotere and taxol, I found Abraxane pretty tolerable in general but now I'm thinking I was just a little lucky.
And I never heard of too much calcium, didn't even know it was an issue. Glad you're getting it resolved though.
Kaption, I hope those blood counts gets where they need to be quickly, it sucks getting thrown of track
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No one has mentioned a shot to me.
Go back next Wednesday to see if I'm built back up. It's white, red and neutrophils that have tanked.
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Hi ladies - JFL thanks for the tip - maybe we are twins? I am planning a vitamin C infusion asap, along with a ducolax suppository, because I am dehydrated, have little appetite,tired/ sleepy and constipated. oy Onc says it is all calcium related - Oriole your friend must have had a similar path. Will be checking to see if insurance will cover an IV of something; personally I'm thinking fiji water with a little pinot grigio. ~
(()) Claire in sunny LA
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I had my infusion this morning. I lost count but it's every two weeks since the beginning of February and I haven't skipped any so about 14 my tumor markers (I don't know which ones) have gone down from 90.something to 54. Something since April.
I also had my Xgeva shot which for the last two months including today I've requested it to be on the tummy because my left arm was killing me in pain after each dose. Tummy doesn't feel anything and I have had no pain.
I hope we all arrive at NEAD with this drug.
Aurora
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I've had my third infusion and WBC was low. Insurance has not yet approved a Neulasta shot but I need something for an energy boost bad. Since they did not approve that he put me on on strong antibiotic (maybe for ascites too) called Cepro which seems to be affecting the nerves in my arms/hands. Only 3 doses left of that so I hope this SE goes away.I can barely type or write.
My tastebuds are AWFUL. Almost everything tastes like the same like rotten flavor. I have had to narrow down the choices a lot. One thing that remains constant for me is chocolate Ensure on ice. It always tastes good to me and the Xtra brand has lots of protein and calories.
My FATIGUE is indescribable. I can barely walk 5 feet but am not sure if this is left over from my whole ascites debacle or the Abraxane. I get a whole week break from everything next week so hope to really fell 100% better or ask for a lower dose. I am sooooo tired of being tired!
Xgeva always makes my muscles achy so between the 3 I fell like 100 years old.
Hair was coming out in handfuls finally so shaved it this morning. BooHoo!
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Artist-
So sorry you've had a rough start to Abraxane-very rough start.
I can relate to the indescribable fatigue. It's what I had on the last few months of Xeloda. Just spent all day on the sofa. My blood pressure was very low and my pulse very high. Two weeks off of X and all that has gone away. So far on A I've had muscle aches and this week my blood counts were too low to get treatment number 3.
But your start has been SO hard. I pray you get relief on all issues soon!!!
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I really sympathize with you on the taste buds. In the last month or two it got so bad for the first few days after my infusion that I could hardly eat and sometimes food would taste ok at first, then bad after 3 bites, it was frustrating and a few times I closed my door and cried through lunch.
My good ole standby was chicken flavored ramen noodles, they never failed me. I'm thinking of you all and hoping things get better or you find enough good things to stay strong and happy
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Artistatheart, I really hate that you are having such a rough time. I think it's time for us both to get a break. You hang in there, surely it will improve for you. Sending you a big hug,I'm praying for you, trying to keep you lifted up.
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I had my first Abraxane yesterday. It was fine - only tough part was using the Dignicap scalp cooling system. I don't have a port and was using the first session to determine whether I could do Abraxane without a port and it worked out well. They used a vein on the outside of my forearm. I am getting a liver biopsy next Wednesday. The plan was to do a port then if I needed one. I do feel a bit tired and achey today. I am surprised, I thought I wouldn't feel anything until 4 days in or so.
LA, yes, we are treatment twins . . . . Let's get a good, long ride out of this one.
It sounds like my doctor's plan is to do this for 3-4 months and then try to get me in the FGFR1 arm of the NCI basket trial. He mentioned it takes a few months to actually get into that study and that it requires a new biopsy. He said if I am now triple negative, then I can try to get into one of the immunotherapy trials. I suspect I am not triple negative, and still ER+ but just resistant to hormone therapy now. I was looking back on early postings (either on this thread or a prior Abraxane thread on BCO, I can't remember) and I was struck that many people were getting good results on Abraxane, using it for a year or more and becoming NED. If the side effects aren't bad, maybe I will opt to stay on it longer. The biggest challenge is the infusion time as I work full time and
Artist, I am hoping that your fatigue subsides as the abraxane starts to take care of your ascites and after you get that neulasta shot.
Illimae, I love those ramen noodles! I haven't had them in years but I might need to pick up a package next time I am at the store.
Kandy, I agree, Artist and you are both overdue for a break! A rainbow through after the hurricane passes.
Auroaya, wonderful that Abraxane is working for you and that you have been on it for a good amount of time.
Kaption, when will your MO try to give your your infusion again since you missed your last one. Do you have to wait a full week to try again?
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JFL- yes, I go on Wednesday, which is a one week delay. Blood tests, then hopefully treatment. It's been nice to not have achy muscles the last couple of days. I did have quite a bit of hair come out today.
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Well, back for blood work again today. It was better, but she's giving me another week off. The infusion nurses seemed surprised but they don't know how down I got at the end of Xeloda. Think she's trying to not hit me too hard.
Are some of you on a two week treatment schedule? What is your break time?
It's been nice to not have achy muscles.
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Kaption i am on a two week schedule. No breaks. Feeling ok only mild nausea which a few times has turned into vomit. No joint pain thank goodness I take 300 mg Gabapentin theee times a day and 60 mg Cymbalta which helps with pain.
Hope you can get comfortable with Abraxane and that it kicks cancer's butt.
Aurora
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Hi Kation, JFL, Artist and ladies - I had my 2nd treatment yesterday. Good news is my calcium numbers are now back to normal - but we will watch them. My onc wants me to go 9 rounds (3 weeks on, one week off) and then scan, and do another 9 rounds if I am responding. Sounds like a "booby" prize, but I am hoping this med kicks cancer to the curb. I am using cold caps to keep my hair, so after the 2 hour chemo session, they stay on another 2 hours. So far, no hair loss. JFL - how are you doing? I am working from home for the next few months to watch fatigue, driving, etc. I have some lovely flowers from work.:) Last week was awful, the pain was bad and I vomited coffee the day I started my meds. ugh This week, I may have turned a corner. Bone pain is decreasing. How are other ladies doing? Artist are you hanging in there? Kaption - sorry you got postponed. Sounds like X wiped your numbers out. It's a sunny day here in CA.
(()) Claire
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Claire- I'm so glad you are doing better.
I did have to skip today's treatment, but I just got good news that my TM dropped significantly with just the 2 treatments I had and the week off. I was surprised MO wanted them, but good to see a good start. CEA trends have always been accurate for me. Down is good!!
I have lost significant amount of hair. Claire, I'll be anxious to see the cold cap works.
Artist- hope you are doing better.
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Caption, I'm on 2 weeks on and one eek off. last scan showed some improvement, Im coughing much less.
I also take Megace to increase appetite and has worked wonders. I've put on around 9 pounds in a month and a half.
cheers
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LA, glad your hair is holding up. No loss of my hair yet either with my scalp cooling system but it has only been 6 days. Great news about your calcium levels too!
Kaption, yay for lower tumor markers! It sounds like your body could use the extra week of rest. Frustrating but probably best in the long run, given we are all running a marathon and not a sprint.
Ziz, happy to read you are seeing improvements on this medicine as well.
The "aches" with my every 3 weeks dose were excruciatingly painful for 4 days to where I couldn't sleep - it feels like bone pain, nerve pain and muslce pain all wrapped into one, with the most painful, throbbing pains throughout my entire body on top of the constant pain. Does anyone else have excruciating "aches"? I thought they would be much milder. I also have some appetite loss and occasional mild nausea but no other symptoms. It is really just the aches that are a problem.I had my first liver biopsy today. Currently recovering from that and looking forward to seeing the results!0 -
Hi all! I am hanging in there although my legs are still so weak I got a wheeled walker to help me get around. If I try to walk on my own I lose my balance a little and have to hang onto solid surfaces. Plus I tire out so quickly it has a little chair in case we are out in a store or something. The good news is i went two weeks without an ascites trip, then there was much less fluid this time. So hope it narrows down to ZERO soon.
JFL, The last infusion I got two weeks ago my forearms got SUPER achy and now I have a weird neuropathy in my hands and am having trouble with small motor skills. I had a week off of everything and was hoping for some "miraculous" rebound but alas not to be. I hope tomorrow we can do a lower dose and see if that helps. I have so many things i want to do while i am house bound and not working!
llimae, once I find a food that hits the spot it goes on my "list" of acceptable options. Must try some Ramen! I have not had any nausea with this Tx just the bad taste buds which have gotten better on the week off and I've been eating like a horse. lol!
My hair was fine until week 3 when suddenly when I brushed it came out in swaths. Once I actually shaved my head it was OK. I did buy two wigs for going out but otherwise just leave it out in the open air. It does make me look very old though.....
Kaption, good news on the TM's! I am on a schedule of every week for 3 weeks off for one. But that may change tomorrow when I tell my Onc about a few of my problems. Haven't got a Neulasta shot approved yet but wonder if that would help with the weakness and fatigue. Also interested in the Vitamin C infusion I hear everyone talking about?
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Artist! worried about you.
JFL and I are keeping our hair on cold caps - so far so good for me. It seems that becoming ultra tired is par for the course on the med. My Saturday at the mall - needed a new watch battery - went online for the store location, debated whether to walk through Macy's or walk through Saks to short cut to the battery store - chose Saks hoping for more chairs and better A/C inside. Got battery and back in my car just as energy evaporated. whew Now I'm planning for a cool Lazy boy chair in my living room - to avoid climbing upstairs for a nap. lol I love my IV vitamin C (thank you Z). Works well and keeps me hydrated too.. Blood markers may indicate a need for neulasta (I had those in the stomach during first chemo) - they helped. Also if RBC drops too much consider a transfusion. I am watching my numbers like a hawk after the calcium scare. I'm eating better this week too - let's keep this up. How many rounds are you on now? I start round 3 on Tuesday. Kation - rooting for you too. How far did TM's drop? JFL - I feel you on bone aches -are you starting round 3 this week too?(()) C
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Artist and lalady- glad to hear from you both, but sorry this has been so hard. I'm feeling better with my 2 week break. But, hope I continue to TMs drop. CEA went from 154 to 122. That's a new low for me. I know those numbers look impossible, but I have lots of bone mets so we just look at trends. They have always predicted correctly.
I am worried about your extreme fatigue. That was me the last couple of months on Xeloda. Was hoping to not return to that.
My hair is almost gone too. But, I have not really had any nausea or neuropathy. Just lots of achy muscles.
Thinking about you both a lot. Hope this stuff works AND allows us to have a decent qol. Here's to us!
Let us know how you are doing. Hugs and prayers!
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LA, I am actually on the every 3 weeks schedule so don't have my second treatment until the Friday after next. It seems like an uncommon dosing regime for Stage 4.
Artist, I saw the photo of you on the liver mets thread. You look so beautiful with the wig. Going with bangs is a smart move - no worry of whether the edge of the wig is showing
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JFL - I was told Abrax; once a week for 3 weeks, then one week off. If numbers dip, then once a week for 2 weeks, then one week off. 9 rounds initially and 9 more if I am responding. lol How are you doing once every 3 weeks - a larger dose? Must be easier on the cold caps, but want you to get better. Kaption how are your doses on this? I had a little more energy today.
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lalady- Glad you are feeling a little better today. I was supposed to be on one treatment a week for 3 weeks, then one week off. But, I only had 2 treatments and then the next 2 off because of blood counts. I should have my third treatment this coming Thursday. I will be very surprised if I'm not ok to have it.
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Had my 4th infusion yesterday after a week off and had so much energy today I zoomed around doing a lot of light housework my DH never bothers to do. LOL! Nice clean house. Must be the steroids in the pre-meds I guess. Hope I don't crash big tomorrow as a best friend is coming from Iowa to stay the night and visit all day Thursday.( I'm exhausted already just thinking about it) Neuropathy seems to be better today too, so fingers crossed this is working well. He said it seems to be working fast on the ascites so hope to get a good TM number soon too as well as some good scans in Sept. He did lower my dose a bit to see if it helps with my energy coming back.
lalady, My insurance turned me down for Neulasta as they said I did not have any "catastrophic" event due to low blood counts???
Kaption, can they lower the dose a bit as that helped me when I had low blood counts after the second....I have not had any nausea either, fatigue was way better today but do get sore muscles especially in my arms.
Thank you JFL, I do like the new wig but only use it for social stuff. It is so much more comfortable to "go bare".
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LA, yes, the dose for every three week administration is higher, stronger with more side effects than a weekly plan. This was his first recommendation but did say I could opt for weekly. I think MO wanted to use something strong to try manage the situation in the next few months and then convert me to theFGFR1 basket trial. I hope it is working. My liver started hurting yesterday. Hope it is dying mets . . . .
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Artist- SO glad you are feeling better!!! Relax and enjoy your friend.
I'm also wondering if MO will change things up. I'll see tomorrow.
I also only wear my wig when necessary. Bare is more comfortable. I'll have a decision to make September 23 for my 50 (!) high school reunion. Looking better or being comfortable?? Wig or ball cap.
Guess it depends on how hot it is.
And, I'm furious that your insurance company wouldn't pay for the Neulasta shot! No matter what???
Again, good news from you!
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Hi ladies - finished round 3 yesterday, but no "bonus" energy, as I don't get any pre-steroids, just zofran. lol Next week is my week off to check blood work. I'm feeling ok today. Hair is still good, but a little less on top. 6 more rounds to go before scan. I am working from home office, which keeps me busy and distracted. Trying to drink more fluids to get this s*** out of my system. I have family coming Friday night, so will enjoy that a lot. Hang in there JFL - worried those mega doses may be rough. What is this basket trial you are planning? Curious re: onc thinking on that. Artist - you rock with all the cleaning. Kaption - hoping you handle your next round well on Thursday.
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Well yesterday I was on a steroid high, today I crashed bad! Could hardly stay awake, had NO energy. Was a couch potato all day and cancelled my friend for the overnight visit but hope for a day with her tomorrow. Tomorrow is another day......bummed
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la lady la I don't get steroids just zofran at the clinic and at home.
artista perhaps you could try a lower dose but still effective I'm on one every two weeks and avoid the steroids
Aurora
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Oh, so sorry, Artist. Take care. Hugs!
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