Abraxane
Comments
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Question got anyone - Is NED the same as remission?
Karen
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Hi Everyone,
Well Friday will be my third treatment of second cycle and so far so good. My tumor markers have come down from 370 to 185! Let’s hope this means good things, normally my markers are spot on, but I feel like I never let myself get excited anymore, too many treatments for me start off like this and then fail abruptly. MO says we will scan after 3rd cycle.
I hope everyone else is feeling well and treatments are doing their job.
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I am on the three week cycle of Abraxane. I was not able to complete the first cycle due to a low White Blood Cell count. The MO lowered the dose and I was able to complete all three infusions ofthe second cycle. I could not start the third cycle (after the week off) due to a high creatinine count. I have had two infusions of IV fluids and am drinking 64oz of water daily at home. No one seems to know why my kidneys are reacting in this way other than the chemo drug. Has anyone else had this reaction or situation? I am supposed to have a PET scan at the end of the third cycle to see if this poison is killing/shrinking the tumors. I really want this to work and want to have the PET scan to prove it. Any information would be much appreciated.
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JCS,
I sure hope this works for you! I started getting the neuropathy and got the lower dosage (-15%) and my cancer started growing again. I notice that in the winter I don’t drink as much water and I’m not as thirsty as the rest of the year. I often drink hot tea in the evening to add to my fluid intake. Has your doctor said what would be next if this isn’t doing what it’s supposed to do
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After losing my hair, I am stopping Abraxane and moving on to new treatment. I have had so much problem with it. Major neuropathy, edema, shortness of breath and myalgia.
There were some pains and lymph nodes that I felt had gone away so I think it might have worked a little so I feel we should have kept going. However the new med Cannot be mixed with chemo so we have to stop. I hope everyone will stay stable with abraxane.
Minnie0 -
Minnie, so sorry to hear of all your side effects. My MO tried doxil on me last week and I had a bad reaction (I couldn’t breathe) as soon as they started the drip. So now it’s on to Halaven starting next week along with the faslodex. It’s awful how much these medications beat up on us. I hope your symptoms are minimal on your new medsand the side effects of the abraxane go away soon.
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Hi Teachermom,
I had 1st treatment of 4th cycle today. I also had my pet scan. I seem to have a similar history as you do. I respond, things look good, then my brilliant cancer cells stop responding to the drug. I've done Fasledex, verzenio, Xeloda, and now Abraxane & Carboplatin in a period of 15 months. My scan showed great response on everything above my diaphram, but below was a different story. I have a mass in my cecum that grew and nodules on both adrenal glands. Plan is 2 more cycles on this and a surgeon consult. May remove mass. My CA15-3 also dropped 9 points to 324 after jumping 66 points to 333 2 weeks ago. Impossible to count on anything, I think.
Karen
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Hi Teachermom,
I had 1st treatment of 4th cycle today. I also had my pet scan. I seem to have a similar history as you do. I respond, things look good, then my brilliant cancer cells stop responding to the drug. I've done Fasledex, verzenio, Xeloda, and now Abraxane & Carboplatin in a period of 15 months. My scan showed great response on everything above my diaphram, but below was a different story. I have a mass in my cecum that grew and nodules on both adrenal glands. Plan is 2 more cycles on this and a surgeon consult. May remove mass. My CA15-3 also dropped 9 points to 324 after jumping 66 points to 333 2 weeks ago. Impossible to count on anything, I think.
Karen
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I have done 3 cycles plus one treatment. My tm went wayyy down and then with the 3rd cycle they still went down but only a little bit (15 between treatment 2 and 3 of 3rd cycle). I worried that maybe it was slowing down in effectiveness already, but the one taken on my last treatment was 187, down from 273. So don't lose hope too soon!
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Karen I find it hard to get excited about good results because I am too busy fearing the worst. It’s a vicious cycle and crappy disease. My MO is pleased. But I am holding my breathe until next months scan.
HLB sounds like you are on a good path. Do you also take Carboplatin with the first dose of each round? I do. All in all side effects are bearable, just fatigue the third and fourth day, nothing much else. So far.... I don’t want to jinx myself.
I hope everyone else is feeling well!
Amy
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HLB - I take Carboplatin with all 3 doses of Abraxane. I also find SEs tolerable.
I have my appt with the Surgeon on March 6th. I think I want to do the surgery, but we'll see what he says. My Oncologists concern is that they don't know how much of my colon they will have to take until they get in and he's afraid it could be a lot and i could end up with a bag. I don't think his concern is based on concrete evidence, but just the unknowns that are so common with this disease. That's why he wants to try with the chemo. Two more cycles then another pet scan.
Karen
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I am not on carboplatin or anything else except XGEVA. I get whole body aches that used to last for 2 days but now have been lasting at least 4 days. It feels exactly like when I get the "flu" . It makes it hard to go to work. Not excruciating but more like constant misery lol.
I just ordered some farm animal dewormer, an alternative treatment I have been reading about and talking with people in a fb group about that will be arriving Monday. Now that tm are down a lot I want to do something other than wait for it to stop working. The book is "How to Starve Cancer" by Jane McClelland. The treatment is febendazol.
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HI HLB,
This past week I notice, Monday 3rd day after chemo, I was really achy. Hit by mack truck type. Do not remember it feeling like this before. Tomorrow is chemo again so i'm curious as to what Monday will be like. Tuesday and Wednesday were tired days, but not aches like that.
Karen
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Karen that sounds like my aches. Especially my legs bother me. It makes me feel I am just trudging along all day waiting til I can finally lay down. I haven't taken anything because I'm being careful with my liver. Maybe ibuprophin would help if you can take that. Every time I think well, this will probably be the last one because I can't keep feeling this way and trying to work, but when the next treatment comes around I feel better enough to go ahead with it.
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Hi All!
Well...I can say that having a week off is bliss. So nice not to have Chemo today and cold capping! I did get a bit of good news yesterday...markers are continuing to go down, now at 154 from 370. Why is it I am not allowing myself to get excited?! I hate the rollercoaster we are on.... I can't even mentally allow myself to enjoy the small victories.
Side effects thankfully still are not too bad, although I do notice a little more numbness in the toes. No aches just fatigue, but I am only at the finish of round two.
I hope everyone has a great weekend. Feel well!
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Wow Teachermom!! Your TMs are fabulous. If mine were doing what yours are doing I would be dancing in the street.. So Go Dance in the Street. That is really good news. Let yourself enjoy it. Very happy for you.
Karen
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Hi Everyone,
I had infusion two of third cycle and am still just battling fatigue really...BUT I am gaining weight!! Really?! I have gained 8lbs since starting and I feel gross about it. I also get puffy ankles and feet by the end of the day...so annoying. My eating habits are the same, if anything I am more careful, I have battled with my weight my entire life. Ugh I struggle to be in my size twelve and I am content here. Any body else experiencing weight gain? This sucks!
I am going to get scanned at the end of this cycle...I just hope it working.
I hope everyone is feeling well! Enjoy the weekend. Happy St. Patty’s!🍀
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Hi Teachermom,
Don't have the weight problem I think because my appetite isn't great. Sorry you are actually gaining. We do share the fatigue though. I'm on 4th cycle, have done 11 treatments. I'm not feeling the fatigue going away even though I haven't had chemo for a week. I know it could be a lot worse, but I"m just tired of being tired. My TMs are going up and pet scan was only half good and half bad last month. Would love to know if anyone out there has these drugs turn around after awhile.
Karen
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Teachermom, I am just finishing off my week off and about to start cycle 5 Monday. Well for about a week now I have been noticing fluid retention in my abdomen. Yesterday it was really bad and my lower legs were very swollen! It was alarming. Today I pretty much slept all day and my legs are back to normal and abdomen is down some but I can tell there's still fluid in there. Before I started abraxane I had some ascites and after the first treatment it went away completely. I figured it was probably liver Mets since the chemo got rid of it. Now I'm not so sure because I can't imagine the chemo stopped working that abruptly. I'm wondering if it's heart failure. Maybe this chemo causes fluid retention and that is what's happening with you, especially since eating habits have not changed. I have numb fingers and toes but it's not painful. I also have a weird numbness across my belly, right above the waist that feels like there's a rubber band around me. Not sure what to make of that except probably spinal damage since that's where the Mets are. It didn't start until abraxane though.
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HLB unfortunately...yes..edema is a side effect of the taxtanes.
. I had it with Taxotere years ago as well, and even when I was done it lingered. It does go away eventually off treatment. It is awful besides feeling puffy again I have gained weight...and that sucks too. I swear this dreadful disease has mad me sad to look in the mirror.0 -
Oh definitely. people who I have not seen for awhile don't recognize me. I look about 10 years older than I am. I'm going to hope it's a side effect and not heart failure but my ankles were so fat! And it's pitting. I call them play doh legs.
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Well I just spent the last two days on the couch. I was pissed at myself the whole time but I just did not have any energy. I still have to take the trash out and I'm having coffee first. Is this normal? Its even my week off so I haven't had a treatment for two weeks. I did go for a walk Thursday and Friday which I haven't done all winter. Maybe I was just catching up. Does anyone else seem to need this much rest?
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HLB, I didn’t experience much fatigue on abraxane, I’m thinking maybe blood counts are low. If you check and your labs are normal or close to normal, I’d email your MO, especially if this is unusual for you.
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Thanks illimae. I saw him today and believe it or not forgot to tell him! I was telling him about my fluid buildup and I guess it was too much to remember lol. My counts are a bit low but not very much. I think I'm just debilitated and need some exercise.
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Hello Abraxaners! I just got my tm from this past Monday. Down to 103. Wooop! I wonder if I can actually get down to normal? That hasn't happened in 7 years. I don't think the worm medicine is having any effect but no way to know for sure so I will keep at it for now. Hope you are all doing well. Looking fwd to 2 days off. Hopefully I won't sleep them away this time.
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HLB, yay on the TM’s 😀
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Thanks lillimae!
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OK ladies, this is where I am finding Abraxane info, but I'm not stage IV, heck, this is for a second primary, which is endometrial. I had a horrible reaction to Taxol so they had to change my treatment to Cycle 1, week 1 Abraxane and Carbo, Week 2 Abraxane and Carbo, Week 3 off, Cycle 2 - 6 repeat. Since I don't have mets, can I even be on here to ask questions???? For BC I was on Taxotere, Carbo, Herceptin and Projetta, taken week one of 3 week cycles. I kinda knew what to expect, I'm clueless what to expect now.
So, here are my questions, first, may I be on the Mets site without mets?
Second, what should I expect for side effects. I have the patch on right now, hopefully it helps, I can't get constipated, because the area where my cervix was removed isn't healed enough to strain when having a bm. I know to day I'm doing OK, becaue of the steroids, but terrified of tomorrow and the rest. I'd like to know, will I have a 'good weekend' like I did on THCP?
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Hi knmtwins, when did you have the first treatment? I am only on abraxane so I don't know what your side effect my be with the Carbo added, but I have flu-like pain all over. Other than I'm doing OK and work every day. What is the patch you are wearing? As for being on the Mets boards, I have no problem at all.
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knmtwins, feel free to ask, I don’t think you’ll find as much info on other threads.
My experience with abraxane was fairly easy. I had bad reactions to taxotere and taxol, so I had premeds with abraxane but many don’t. Days 1 & 2 I felt like a powerhouse (thanks steroids). Day 3 some mild D, day 5 mild bone pain, ibuprofen worked fine. I worked full time (except infusion day without issues) after a few treatments I lost my hair. About 1/2 way through, my appetite took a big hit and for a few days out of the week everything tasted like a gym bag (ramen noodles were ok). Also, my big toenails got infected and hurt badly, at that point my MO reduced the dose my 20% due to neuropathy. I never had fatigue, probably because I took walks everyday. Everyone is different but I found it pretty doable.
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