Abraxane
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Nichol- I'm glad you found us and can see a possible way out of your terrible past months.
I've only had four Abraxane treatments and had to have a dosage reduction. But on that lower dosage I'm feeling much better than I did at the end of Xeloda. Yes, the hair gone again- oh well.
Stay in touch with us.
Prayers and hugs for feeling much, much better!
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Hello everyone reporting from southwest Florida! Thank God the power is back since yesterday afternoon and we got Cel signal today. Fortunately I did not suffer too bad through the weather only yesterday I had a couple of nausea/vomit fits but that's it.
Hope everyone is doing well.
Aurora
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Aurora- so good to hear you! I have a close friend in Ft. Myers who is struggling. Her house did not flood though. Hope she has power today!
Glad you made it ok.
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I begin Abraxane tomorrow Friday Sept 15th. My MO already lowered the dosage a bit to start and we will do weekly infusion with a 2 or 3 week duration to see if we can affect the bumpy rash on my neck, it's so superficial we can see if the chemo is working or not. I begin the prednisone taper today coming down from 100mg to 80mg that she put me on for the immuno related pneumonia that Keytruda spawned a month ago. She said it will be a little bit like driving a car with abraxane and the steroids, gas and brake, gas and brake, the immune system got too revved up and then we damped it a bit too much with prednisone now we add the chemo and it's like a dance. I'm hoping the abraxane helps a bit with the ascites too. That's really been my main problem, the swelling in my gut is such that I have no room to breathe or eat well. and peeing and pooping is a real chore just so much pressure my body isn't used to. And it's not typical ascites it's all little pockets of swelling in and around my nodes in the mesentery. They tried to drain for pathology two weeks ago and only got a 30 ml sample. Not enough to "characterize". Although the fluid didn't abjectively "appear" malignant. I do have a little pleural effusion still on bottom of my left lung but it is so much better and my pneuomonia cough is probably 99% gone. Just soooooo slow to make a turn.
The rashy bumps on my neck actually turned up in July they are like mosquito bites combined with a pimple, itch sometimes, leak fluid under the skin like blisters sometimes, probably just some rogue TNBC cells that leaked out of the lymph nodes in my neck that have been inflamming, swelling, going up and down since last fall. My recurrence really has been kept to the lymph nodes I have a PET from August 3 and a CT from August 17th that still show no speck of cancer in liver, lungs, or other organs. GO figure.
The Keytruda trial was interesting. Early on it looked like it was working, the nodes in my neck went down, but then other nodes in chest and gut started to inflamme this spring. Then I got hives for 2 months. Then I got fevers for two months. Then the gut node pain increased and now I have basically lymphedema in my gut that matches the lymphedema in my left arm (two sentinal nodes removed 4 year ago and the supraclavicular nodes that got my stage 4 diagnosis in Oct 2016) I'd be happy to answer any specific questions about keytruda that anybody has. I did it concurrantly with xeloda. Sometimes it's hard to know what drug was causing what. Incidentally, this trial had the option of doing xeloda by pill with keytruda OR weekly abraxane infusions. Guess I get to try the abraxane now afterall. Here's hoping fingers crossed, it helps me turn a corner. And soon. ~Nichole
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Nichole- hope the Abraxane really helps! What challenges you've had!
I just had my fifth treatment this morning. My first time to get 3 in a row. I was rock bottom (1.01) on neutrophils, but got the green light. I had some achy muscles this afternoon. Now I a week off. Hope this lower dose is working!
Hope we are all getting good results.
Everyone have a great weekend!
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Hi ladies;
I have been on abraxane and gemzar for about 4 months now and I was feeling better every day but two weeks ago I began having this cough and I'm freaking out. My fear is that this treatment stops working.
Scans are coming up next month soI'll find out.
Ziz
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Ziz I have had persistent cough on and off since my Mbc dx. Somehow I think I saw somewhere that it is a common occurrence during cancer treatment. Try not to worry too much and do mention it to your onco next time you see himno her. In my case I was sent to a pulmonologist who dx asthma and sleep apnea which coupled with my Gerd made throw up. I'm better since using inhalers.
Again try not to worry it could be something as simple as asthma but needs to be addressed.
Aurora
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Peacock, the exit same thing happened to me as far as ascites. It came on like gangbusters and I lost all appetite and therefore 25 pounds and muscle mass in my legs. Also the same issue with the pressure in my belly which made it difficult to go to the bathroom. I have to say Abraxane has helped me. I was going in to get drained every week and it's now ben 3 weeks since I've had to go in thank God! My Onc gave me two weeks off here to try and let the neuropathy clear up but so far it is not much better. My hands just don't work right. Walking is getting somewhat better though as I am forcing myself to walk around my house without the walker. Balance is still off. I go back Monday for next round and just pray so much that this does not go backwards again or that the neuropathy is permanent!!!???
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the artist-was your ascites tested? I was so disappointed they didn't get enough sample for full pathology on mine the procedure sucked and hurt! I hold onto my doctors experience that it isn't malignant...just reactive lymph fluid. It is freaking crazy how it's made me an invalid like my insides are always on the verge of exploding...can't walk without horrible pain ugh. I hold onto hope abraxane helps me like it has you! You give me a real mental boost tonight thank you!!
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My MO added a new test to my CBC yesterday. It's metamyelocyte. Does anyone else get this test. As far as I can understand from doctor Google it has something to do with the shape of the nucleus and the "normal" read is 0. Mine is 2.
Guess I'll hear something if it's a problem.
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well my first abraxane chemo was uneventful . It was.the huge blood I passed trying to pee put me in ER after chemo with a Foley catheter (horrific) and a hospital admission with BP of 185/100. Can't figure out if ascites pressure is causing bladder to not empty or the ramp up of oxy drugs has slowed all downing the last month ( colon too what a mess). Never been hospitalized overnight my whole life ...really wish I could catch a break. Been having trouble with bladder since pneumonia started week of August 15 just no natural urge to pee ....sucks so bad. Attending onco wants low back MRI to rule out spine or nerve mets tomorrow
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So sorry Peacock girl! I hope you get answers and relief soon.
Gentle hugs!
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switched pain med to gaba pentin holy cow it's working and appetite came back ate two real meals today . Will probably stay another night liver ast and alt wonky before abraxane but super wonky after ??? They think reactive immunotherapy in this one too ...lo back MRI hadn't been read by radiology yet but attending says nothing suspicious. No side effects from abraxane to mention. Really needed this small move and ability to eat!!!!!
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Hey Peacock - think of this as a mini-staycation. Glad the gabapentin is doing well, I take that sometimes too. Let's get you eating and walking better, so you are ready for your next abraxane date. :0 No more peeing blood. Kaption - I don't know about metamyelocyte. Please ask your MO to share. I was in the mall today, tired but happy to get a present for my 18 year old niece. Artist - I am rooting for you! Safe and painfree weekend everyone.
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Peacock, Sooooo sorry you are having multiple issues. Glad the new Oxo is working though. You need a break. My bladder issue is opposite, drink a few ounces and BAM need to pee. My ascites unfortunately was malignant but still hanging in there with no draining needed. Though I still get a little bloated and feel pressure after a meal. But it usually subsides by morning. Been walking around as much as possible without walker today. Hoping to attend my nieces wedding in two weeks walking in unattended. I don't want another weeks break from Abraxane even with the hands issue as I am so afraid of the ascites coming back. Just a heads up, I am usually fine the first and second day of infusion, by the 3rd I sort of crash....
Kaption, never heard of that test.....but I admit I could be more vigilant about checking my results. Everything just seems like such a chore lately when I'd rather be doing something pleasurable.
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So started up Tx Monday after a two week break. Was up half the night on steroids. Then Tuesday was OK. The hand neuropathy is severe today and had the steroid crash. Plus I had graduated to a cane from walker but was wobbling all over today. Hope to feel much better tomorrow. One says I should be walking better or we need to rethink Tx....boo, feeling pretty down and discouraged
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So sorry , artist. I pray they can get your tx fixed get you feeling stronger and better. Hugs!!
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Caption, today was better. I made myself go out shopping just to walk and stand on my legs. It was tiring but plan to try again tomorrow. Maybe go ride a reclining bike at our little gym...I'm not even sure if exercise helps with neuropathy but if so it is a SLOW process. Like all of us I just wish I could go for a long stretch with no shakeup or complications...
kaption, did you find out anything enlightening about that test?
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The goal is always to keep moving, even when we don't want to.
This is my week off and all I had was labs yesterday. Oddly, those two tests we not included this week. I see MO next Thursday, so asking about that one. And the blood urea nitrogen test, which has dropped below normal on Abraxane. Anyone else notice this?
Hope you get some movement and relief, artist.
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I'm at the hospital right now almost finished with my infusion I don't know what number cycle it is but I've been getting it every two weeks since February. My labs are A OK. Hemoglobin a little low (9.5) but not of concern.
My problems are logistical transportation and such I live outside the city so it's a long ride and I take the handicap bus, but I have to deal since only this way I don't have to pay the 20% that Medicare doesn't pay. Looked at supplemental plans either high deductibles or high premiums. Oh well.
Hope everyone here is doing well on this Med.
Aurora
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oh I forgot to mention that one of my hand nails and one in my toes are coming off the bed. It started when I was on Xeloda but has gotten worse on Abraxane
I asked the oncologist nurse today and she said it is an se. Anyone else? I asked her if it was going to fall she said she didn't know but to be careful.
Au
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Yes! That part was awful, I put some tape on my fingernails to keep from catching them on things and my big toenails were so damaged and painful that I ended up having them removed.
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Aurora, nail problems at definitely an Abraxane side effect. Mine are ok right now - has improved since I stopped Xeloda to where I have been able to get manicures again - but I have only been on Abraxane 5 weeks.
I know most on this thread are doing weekly Abraxane, with a week off every 2 or 3 weeks. Is anyone out there on an every 3-week dose like me? If so, has anyone taken this dose for more than a few months? It looks like I will be staying on Abraxane (so long as it is working). Not sure if I can handle continuing on a 3-week dose due to toxicity after the 3-month mark but I do find only having an infusion every 3 weeks very convenient!
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UGG had a major fluid retention crash after getting hospitalized and then being on 100 mg of prednisone made me absolutely insane I've had maybe seven hours of sleep in a week I started my own taper and I'll be down to 40 tomorrow . My oncologist had the whole week off she is amazing she suffers with MS and I think she works a month and then take the week off so I really felt like my medical team dropped the ball this week her nurse was in contact with me but didn't seem to think I need to be seen by whoever was on call. This week has been absolute hell not sleeping has given me horrible thoughts that I've been dying or that I needed to commit suicide even. I can't begin to explain how cruel it is not to be able to sleep through this horrific week of my life. And even though I do have ascites it's so atypical because of my horrible inflammatory response to the immunotherapy drug. It's like I have tiny pockets or just inflamed tissue not like they can drain it.
If there is any good news to the story I feel a tiny bit better today I have lost a lot of the fluid that was plaguing me over the last three days. But I have so much more to go to get it out inflammation in my gut actually worked its way out into lymphedema of my whole trunk . My bladder and colon appear to be finally working more normally as well. And the best news is the rash that was so red reactive and angry on my neck that came back as TNBC on biopsy 2 was ago is going away so i guess Weknow the Abraxane is working
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Ladies - headed for round #6 today. After JFL's post, I stayed up last night reading 2 studies of Abraxane + Avastin comparing weekly doses @130, every 2 weeks @260 and every 3 weeks at @260. FYI results were that weekly infusions were slightly more effective and had less toxicity. Very interesting. I am not getting Avastin, but something to think about for all of us. I have to take decadron with my Abraxane to avoid a drug rash, so will be up all night again. Maybe time to catch up on Game of Thrones. Anyone else have any study data? I am very curious. Not happy at possibly doing another 9 rounds after this, but concerned about putting all my eggs in Xeloda basket next. Watching Z go to Japan for immunotherapy with great interest. For what its worth, my nails and toes are fine thanks to Biotin and I booked a British Isles cruise at end of May.
Thoughts?
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I had Abraxane weekly and found it pretty tolerable, no studies to site but it makes sense to me. I was on it due to severe reactions to taxotere and taxol, my MO agreed to it since it was my only option but there were no studies of Abraxane with Herceptin and Perjeta vs the other two. In the end, my egg sized tumor was reduced to some scattered cells, not even a formed cluster, so I guess the combo worked well enough.
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Oh my gosh, PeacockGirl. You need to be able to reach a doctor even if it is your onc's week off. Make her set you up with one. It seems unfortunately common that nurses brush patients off when they call. They seem to consider it a duty not to bother the doctor. A week of suffering like you had and feeling suicidal is serious and needs a prompt response from a doctor. Please take care, and don't listen to the drug talking if it starts talking about suicide again, but call for help.
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Illimae - how long were you on the Abraxane +HP combo? Very glad it helped you! What are you taking now? I am using cold caps and still have my hair, but its chilly wearing those caps for 4 hours. Shetland - hoping to join you on X in the future, won't know timing until I have scans first week of Nov. Don't want to leave A train too early but.... this med is not easy. Red welts on lower arms and legs look like a cancer mosquito got me. oy Peacock - yikes at that Dr, but hoping Abraxane is helping you. Sending a (())
Claire
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lalady1, I was on Abraxane with H&P for 5 months, I had premeds too due to the previous reactions. About 1/2 way through, my MO reduced the dose by 20% due to neuropathy, my last chemo was on 5/29. I had surgery and just finished rads, now I am only on H&P every 3 weeks, an Xgeva shot every 6 weeks and tamoxifen daily. This is still my initial planned course of treatment, hopefully it all works for years to come. I'm happy you still have your hair, mine is growing so slowly.
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Boy Peacock, I agree with Shetland. You need someone to confer with. MY heart goes out to you. Lack of sleep on top of everything else is enough to make anyone feel wound out. And nurses do tend to blow us off I have also found. Regarding ascites, I haven't had to be drained in 5 weeks but still get very uncomfortably bloated and hard in my trunk area. I have found a dose of Miralax every few days and a GasX tab when I feel especially "tight" really helps alleviate pressure.
Aurora, My nails are pretty fine but my neuropathy is not getting better. My hands/arms feel so leaden and finger tips are dead. My Onc doesn't seem concerned about this since I could button and unbutton my shirt?? But still having bad walking days and using the cane. I went to a wedding Sunday and was doing pretty fine most of the day. By the end I was getting tired. I went to the restroom and on the way out my leg just gave out from under me and I fell. It was so weird and unexpected. The next day I was so weak I could hardly walk up a few stairs with my cane and still a little weak today. Was supposed to have another infusion Monday but he made me skip again due to the walking. Said it won't hurt as I just had one last week and my TM's are down......Still wondering what a scan will show.
JFL, Does the stronger dose less often knock you down at all or do you tolerate it OK?
Claire, this is a hard drug but I want to hang in for as long as it's working. wondering if we took a break for Xeloda if it is something we can return to later? Another trip! You go girl!
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