Abraxane
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Oh lalady, that sounds painful indeed....it is so hard to have pain in the middle of chest or ribs as turning over or twisting makes it worse. Hope you are 100% by Thanksgiving!
JFL, I sure hope I have a good run on Xeloda too (when I FINALLY get it). The ascites got better on Abraxane but the neuropathy has to clear up. The ascites makes it difficult for me to go out for very long as my stomach hurts and I'v been getting a little nausea. I'm pretty tired of being cooped up. The Specialty Pharmacy had not called by Friday as they were supposed to so Monday morning I called my Onc office. Finally got a call back at 3 pm and the nurse in charge of prescriptions said that the Specialty Pharmacy had confirmed the order on the 14th. I said "Well, that has been a week...." So she said she would call them to see what the delay is and call me back today. So far no call. If I don't get my meds by tomorrow then it will probably be Monday which will put me out a month with no treatment. Feeling very frustrated and a little mad!
I hope all you ladies are feeling well and have a very wonderful Thanksgiving. Mine will be pretty quiet this year with just my DH, DS and his girlfriend. Can't travel to my families 3 hours away as I just don't feel well enough to face a big crowd. Then my 2 girls are moving back mid-December!
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JFL - you got that right on sneaky cancer "gifts". A sticky lung ( as it was explained to me) has mucus in it and doesn't open properly. I've been sleeping nightly with a vaporizer and the chest pain is subsiding. Going to big chair tomorrow for round #11 of A-train. Hoping it just keeps killing the new liver met and old jaw met. As I said my PET was good with most bone resolved. For Thanksgiving, I am eating at home with my sister, brother's gf, her sister, my nephew and my cat. Artist - wherefore art thou Xeloda? Surely it came today. ugh on the specialty med carriers that fail us with pony express deliveries. We are having another warm day here in LA. I had a nice brunch at my nephew's family day at school. It got my mind off Mr. C.
Aurora - hope Gemzar treats you well - please keep us posted. DItto Artist on Madame X. Wishing all of you a pleasant holiday.0 -
One thing that was mentioned on my PET/CT that threw me for a loop was that I had calcification of my aorta and its branches. I have never heard anything like that before and it sounds serious. I was freaking out. I googled it and found it is a reported side effect of Abraxane. Has anyone else heard about this?
Artist, it is beyond belief the delay in getting the Xeloda and some of these other specialty meds. One would think all parties involved would try to scramble and make it happen quickly, given that it is a chemo medicine for someone who is currently off meds, as opposed to a "nice to have", elective prescription or something you need down this road. I just don't get it.
LA, was the sticky lung a holdover from the flu you had? I hope round #11 goes smoothly tomorrow.
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JFL - yes, sticky lung was a hangover from the flu, not cancer related. My CA 27.29 dropped another 10 points! Wee and that was during the flu. Hoping for another drop at the end of the month. I am headed for big chair soon and then a night owl romp thanks to steroids. Artist- please tell me your X arrived.
JFL how are your numbers doing on A-train? Blood and TMs ok? I am tired of losing weight! Now down to college skinny pants. Kaption - stay strong and keep us posted. Rpoole - if you are checking in sending you a holiday hug. Ditto SP and Z.0 -
LA, my numbers are all good, all within normal range and PET confirmed Abraxane is working. All good for now! Do you receive steroids with each infusion?
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lalady, wow, glad the sticky lung is clearing up and not part of cancer! You are lucky to be able to continue with the A train. I was bummed to stop as it was working but the darn neuropathy....I think we should have continued until I at least get the X! That's right no meds yet. I keep calling, yesterday the nurse said she was on hold with the Pharmacy and would call me back this morning with an ETA. Nope.....I am beyond frustrated and of course worried, pissed ect.
I don't get it either JFL....... I got steroids with my infusions and was the energizer bunny the next day then crashed the next! I noticed since taking Abraxane that my scans mentioned calcification stats.
Hope everyone is feeling well enough and has a great Thanksgiving!
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Artist, so you had mention of calcification too? A side effect that was never mentioned. I truly hope it is reversible
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JFL, My scan mentioned "no calcification" and I had never noticed that particular reference before on a scan. I never heard of this mentioned as an SE either! Interesting......I did not really have very many infusions total since we skipped every other week because of the neuropathy. I wonder how long it takes to get a calcium buildup?
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Got my new TMs yesterday. (CEA trends have been very accurate predictors for me) and they are up for the second time. I’ve only had 3 months of A. First month was a huge drop, then 2 months of increases. I see my MO Monday. Have no idea what will happen.
As are most of us, I’m on several boards. I’m thankful for everyone here- those who really understand what this roller coaster is!
Happy Thanksgiving to all.
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JFL, Kaption and Artist - I receive Zofran for nausea and Decadron (steroids) with each IV, then the milky colored A-train, followed by a saline flush or two. Yesterday they had to push meds as they ran out of IV bags (!) -luckily A-train comes with it's own. I am tired today but ok, mild neuropathy in left foot and some shakiness in my left hand which is the norm. I work on Tuesday, then chemo on Wed. Artist - where are you meds? YIKES Kaption - wth? If A-train is failing after 9 sessions (I think you had that many), please ask what is next? Remember Gemzar penetrates the blood brain barrier if that area is still lighting up. Also reason to PRESS your onc now for Abemaciclib since it is a monotherapy and hits the BBB as well. Don't wait for these oncs to think for us, I know x failed you. Taking a page from Z we have to be our own best advocates. And from time to time I do remind them I am a lawyer.
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LOL lalady, I hope that keeps them in line! Hope that is the worst your neuropathy gets......Still no meds, I am on hold until MONDAY!!! I called Friday again and the nurse said the Pharmacy that had my script now was closed until Monday! I was like WTF??? I wonder how many people have their cancer advance just because of med delays? If I had know we would skip Abraxane infusions and then this I would have insisted on getting the A until the Xeloda arrived. I would rather deal with the hand neuropathy than the ascites or liver mets getting worse.
kaption, dang it all. i hope that is not the case. I have to say when I got my A infusions my TM's went down after I had skipped 2 weeks, then went up a week after I got the infusion?? My are usually pretty accurate. My scans were fairly stable so hmmmmm......
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Artist, I saw in the other thread you were thinking of/planning on emailing MO. Definitely do that. I think in most cases, MOs have no idea what happens after they write the prescription which permits lackadaisical response by their staff. Email MO, ideally copying the deadbeat nurse so he/she knows MO is learning of this delay. That usually works to kickstart the nurses in gear at my MOs office. I would also request the manager at the pharmacy. These staff view us as numbers and don’t care about any one patient unless you get in their face and make them view you as a real person. Sad, but true in most cases. I bet a lot of people progress while waiting for meds. Totally unacceptable.
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JFL, I so agree. My script was written two weeks ago tomorrow and still no meds. The ascites has mushroomed into borderline pain. I have been miserable since Friday night. I have to wonder now if my decent scans are wasted. I was in obvious near tears with that nurse and it was "Oh so sorry, they are closed until Monday. But you are on the Dr.s radar and I will call you first thing Monday morning!" So yes I did write an Email to my Dr basically pointing all that out and that it has been 4 weeks w/o any treatment! He is supposed to call me tomorrow morning. I have to get another drain on Tuesday and wonder if that could have been headed off if I had had my Tx on time?
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Artist I’m so sorry your dealing with this. I hope you get your meds soon.
Aurora
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Thank you Aurora, today is not the day....
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Artist - this is so wrong! You could have had one more A-train to hold off the cancer growth if you were informed about this senseless delays. I would still get on the phone or better an email (written trail) and excoriate the pharmacy or whoever is responsible for the unwarranted and health threatening delay. My heart is with you.
JFL - rooting for you on the A-train. I'm in the big chair tomorrow. Aurora - hope Gemzar round 2 is easier - hear its a rough one, but effective.
(()) Claire - on my way to work
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Thanks Claire. I called again yesterday with a no nonsense give me some answers attitude. My Dr. office called me back at 7:30 last night to say we are all set. I get the Xeloda tomorrow. Now I just hope and pray it does me well....You are so lucky and smart to stick with the Abraxane as long as you can.
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I finished round #12 - and have next week off. Then 3 rounds in Dec and 2 rounds in Jan. I will do it.
Artist I wish you could have one more round before being deprived of meds for so long. Please tell me your X arrived. Kaption - how are you doing - what did your MO say on Monday? Worried about you. Aurora - how was next Gemzar? Better I hope. JFL - keep pushing through this. Hoping all doing well today. For what it's worth I lost another pound. All those years of trying for a smaller size, who knew cancer was the answer. sigh 0 -
La lady I’ve only had one round of Gemzar my next one is Friday but I do feel it. Tonight though I went to a stage IV face to face support group and things went well. I’m tired but good tired.
Aurora
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lalady
Based on rising TMs (even higher on Monday) and some light headed episodes, we did an brain MRI tomorrow. I got Abraxane on Monday and will again next Monday. Then another PET/CT on the 12th. That will help us decide what is next
I’ve had 3 treatments in a row that fizzled pretty quickly. So, we’ll see. Best news- I only have some minor pain, but nothing major. Not ready for any rads. Fatigue is a real factor.
Patience and hope. It’s been 4 years this month for the mbc dx. Guess that counts for something.
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lalady, I did get it today. After reading all the possible negative SE's I was reluctant to swallow those pills let me tell you. But down the hatch they went. Trying not to think about symptoms that may rear their ugly heads. I really need to feel well enough to get outdoors and breathe! I have to really force the food down slowly to not lose weight. Don't want to get back to where I was a month ago, weak and on a cane. Have a good week off!
aurora, I wish they had a Stage IV group in my area.....
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Artist, glad you received your pills! Don't feel scared about Xeloda side effects. What dose/schedule are you taking? It is very effective on liver (it starts out as an inactive form of 5-FU and activates itself in the liver). At least one other on the Xeloda thread during my tenure there had good luck with it clearing up ascites for his wife.
Kaption, thinking of you for your MRI tomorrow. 4 years, wow, congrats on the milestone.
Aurora, having an in person Stage 4 group sounds very nice.
LA, one more down. You are in the countdown phase with only 5 more treatments! At this point, it looks like I will be on Abraxane indefinitely, until it stops working or I can't take the side effects. None of my plans to take a break or move to something else turned out to be the right option right now.
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JFL, He started me on 3000 mg a day, 3 pills morning 3 pills night. I have had two doses and thankfully so far have had no nausea. I think it might be "Husband11" that posted that and gives me hope that it will kick ascites butt. I am sooooooo worn out from that one symptom......Have you had any neuropathy problems with the Abraxane. Sometimes I feel very strongly that mine was more caused by the antibiotic Cepro, which is a very clear SE and they say could be permanent!!!!
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Artist, that was the dose of Xeloda I took for the first 12 or so months 14 days on/7off, and then lowered to 7 days on/7 off at that point. I have had neuropathy on Abraxane but it is manageable. My full feet and sometimes fingers are numb and tingly and I have less feeling in my lower calves. The biggest issue for me is I feel wobbly and sometimes feel like my legs might randomly give out and I will fall. I sometimes worry people at work might see me and think I am drunk if I wobble for a step here or there. I think the exercise, massages and B Complex all help a lot for me.
Just had my 6th chemo and sitting here waiting to be done with my cold cap. My MO today mentioned that he thinks 8 doses of Abraxane every three weeks is as much as one can tolerate and after that I should consider Y90 or doing Abraxane every 4 weeks. I asked him about weekly Abraxane and he said he wouldn't do that and would prefer every 4 weeks. Not sure why he has such a different view. I need to figure out my next step.
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JFL I was on Abraxane every two weeks for almost a year and it worked and didn’t have too much se. I switch to Gemzar every week three weeks on one week off. That one is hard dose. If I was you I would ask your onc why such a low dose.
Aurora
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Aurora, I haven't heard of anyone taking it every 4 weeks - certainly uncommon - but the reason is I am on a very high dose that is not FDA approved to administer more than every 3 weeks due to toxicity. I will do a total of 5 months on the every 3-week schedule. I have a high tolerance for pain and am otherwise very healthy and bounce back quickly. I also have very aggressive BC. Not sure if he thinks my aggressive tumors need the large punch of the heavy dose or what the exact reason is. He may have been worried the weekly dose couldn't get ahead of my liver mets which are probably a good 25% of my liver right now, down from around 40% or so 3.5 months ago. My liver involvement has been as low as 10% (after 8 months of Xeloda) and as high as 75% (before Xekida, after Ibrance failure). I should probably ask him next appointment.
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JFL - I would really question his reasoning. FYI my UCLA onc prefers to give weekly A-train (3 weeks on, one week off) for 6 mos if we are responding, and then switch to a pill. IV chemo for too long while working as you/we do is too much. Hoping you can try Y90. Please ask him what he is planning next for you. Are you a candidate for immunotherapy like Z?
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First off, found out yesterday that brain MRI showed stable. No changes since June. So, yay.
Then a weird thing happened right before treatment. I was in the chair, hooked up to saline, already told blood counts were fine. Waiting on A preparation. Doing a silly game on my iPad. My T2 pain sometimes hurts while I’m in the chair. Suddenly that area cramped, then it moved to the top of my left shoulder, quickly moved across my chest, then, most oddly, down to my groin. Then it was gone. The top of my head started sweating. It sort of reminded reminded me of a hot flash. Which I haven’t had in years. I thought about calling over the nurse. But it left as quickly as it started. I probably should have told her. But, I felt fine. No other problems the rest of the day, nor today.
Has anyone experienced this weird sensation?
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kaption, good news about the stable brain scan! I'm thinking the T2 just pinched a nerve hard and set off a chain reaction? It's very strange how nerves can project throughout the body.
JFL, that legs giving out thing was exactly why I ended up using a cane. I did not get any tingling in my feet just total muscle weakness. Scary stuff as the last thing we need to do is fall and break something. Are you considering Y90?
I was on 3 weeks on and 1 off but never made it to the 3rd week due to hand neuropathy, but have heard of some women doing the every 3 or 4 weeks high dose.
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PET results are in and I’m leaving Abraxane behind. Progression in bone and liver. And now possibly lung. Talked my MO on the phone and she’s working me in today to see the pictures and talk about Doxil.
Haven’t had a treatment work more than 6 months in over 2 years. On we go.
Thanks to this group for the sharing and positive support. Prayers for you all!
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