Weekly Taxol for Stage 4
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Hi Ladies!
I just found this thread and am happy to find information about this protocol because I started weekly taxol today. And Avastin but I don't know how often. Taxol will be 3 weeks on, 1 off. I started to read all 31 pages.
Hugs
Christina
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Kiss77- Welcome. When I first joined this board I read all of the back pages too. There is a wealth of information there.
Hope all goes well and that your SE's are minimal or nonexistent.
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In the chair for #13 tomorrow. Had a good week off but still a little tired.
Benjnate - Thought you might enjoy this. We came home from dinner out last night and the mountains were golden. I ran in the house to get my camera and try to capture it. Not great but still lovely -
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That shot is totally amazing! Yesterday was so gorgeous, I am savoring every minute of it. Thanks for the visual!
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Hi all!
I also have been doing weekly taxol, since Memorial Day weekend (with herceptin and perjeta every 3 weeks). I just had treatment #13 on Friday. So far so good. My side effects have been pretty minimal. A little tired 2-3 days afterwards and frequent runny/bloody noses, but that has been pretty much it. I continue to work full time, and have only had to work from home once or twice. My hair has even started to grow back, which I know is rare. This is the one time I am happy my hair has a mind of it's own!! My doctor suspects that I will be able to end the Taxol (but continue with the other 2 drugs) after 6 months of treatment, which takes me to Thanksgiving. But I will know more after my scans next week. Keep your fingers crossed...
Hope everyone is doing well and feeling as good as possible!
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Nice to see you becs. There are a few of us newbies here. I get taxol #6 Thursday. Then a week off. 👍. Fingers crossed for good scans for you becs.
Love the picture brigadoon. BeauTiful.
Best to all.
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Yes welcome to all the newbies now I've finished my moaning. I'm coming up to a year on taxol. I do it continuously with out a break between cycles. I'm still working, mostly fatigue is the big one for me although I do get the big D for 3 days of every week and have trouble keeping on top of my funking feet.
My mets have stayed stable after originally reducing quite a bit. I love taxol it's a pretty doable chemo and I would love to get at least another year out of it.
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Thank you all for your replies and support. I went to my oncologist today and he is having me take Abraxane instead of Taxol, though he said they are quite similar. My schedule will be weekly for 6-8 weeks until my cancer stabilize or shrinks, and then he will reduce me to the 3 on/1 off schedule or depending on my side effects. I am getting scheduled for a port on next Tuesday (if they can get me in that day). Since I have a large tumor on a lymph node over my sternum that has grown over on the left side of my chest, plus with my implants, he said he wants the vascular surgeon to place my port instead of a radiologist. Go figure.
Thank you all again! This site is such a wonderful resource and all of you are a wealth of information. It helps me to be able to reach out to you all, since I was turned away from 2 support groups (you are too young and don't seem sick to me), and the other only meets while I work and they are not flexible on times due to space or something. I have been dealing with this Stage IV basically with only 1 other person I know who is Stage IV to lean on and she is not doing well right now, so I don't want to burden her. It is comforting to know that you all have been through the same thoughts, fears, and issues and don't judge people about emotions. It seems to be a rollercoaster sometimes.
Thanks again, and I hope to chat with all of you again soon.
Keep on keepin' on!
Liz
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Liz - What kind of support group is that???
Sounds like your MO is taking good care of you. Don't hesitate to stop by and say Hi. Good Luck with your treatments.
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Dear Liz, I too had mets in my inframammary lymph nodes and was put on Abraxane. I was NED after 3 cycles although I did a total of 5 cycles. Hope you have the same experience.
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Thank you so much, and I hope this makes me NED (that's awesome, alexgram!). I have never been NED since beginning the Stage IV journey. I am trying my best to fight my fears, but it isn't working well right at this moment. I keep crying whenever I think of my 12-year-old daughter and husband. I also have just recently taken a transfer to a new department in my work, and now I get to explain all of this to my new boss. Fortunately I have FMLA and she seems supportive. She knew of my health when she accepted me.
I have gotten lots of callous comments from people through the years of living with cancer, so unfortunately, I wasn't surprised by my experience with a "support group." (Why do you need us? You still seem perfectly healthy.....I don't know what you are worried about.....). Really.
Unfortunately I have experienced some doubts/disbelief from people that Stage IV is serious because I work everyday and have not lost my hair yet. I have found that most people don't understand Stage IV AT ALL, and particularly for young people who aren't bald or sick-looking (if you call 44 young!--I was 38 when originally diagnosed).
Thanks again, and to brigadoonbenson: I've been to Vermont once and loved it. It is beautiful there! I am a fan of Stave Puzzles and just put one together in March.
Liz
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Dear Liz--the way I feel about it is that I hope that people who don't have cancer never know what it's about, and I hope that 'not one more' woman knows what Stage IV means. Message boards like this are the only place where we Stage IVers will be surrounded by those who understand. When I come here, I know that I can say just about anything and not be judged deficient. When I come here and read, I'm able to place myself in the universe of Stage IVers--I'm doing better than a lot, I don't work at my fitness nearly as hard as I should, and perhaps that my journey is really just beginning. I am constantly reminded where my journey will end, even though I desire denial.
By the way, I was never NED until June of this year. It was my second time on Abraxane and both times it really worked for me. The first time I had to quit due to a perforated bowel which had nothing to do with chemo. Had I stayed on Abraxane for more cycles, I would not be surprised I would have become NED then too.
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I was in the chair for #13 today and it went very well. My sister-in-law and my niece came to sit with me and we had good conversations, that is until the Benadryl kicked in. Does anyone else get an temporary dementia with the Benadryl? I can't finish my words, I talk over people at a fast pace and I can't remember where I am going with a conversation. AND I know all this is happening. I also get the RLS of course. Feedback please.
I don't get the numbing agent with the port insertion. It hurts a little but so quick that it is done before it can register. Today was the best. It didn't hurt at all. Best nurse ever.
Wondering if I will get the steroid high tonight. If I do I have a good book to read.
Best to all.
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When I get my pre-taxol cocktail I become very chatty and I think " full of humor". 😛My nurses tell me it is the steroid infused that gets me going. The benedril doesn't affect me or so I think. Lol. All I know is that 48 hours I am very chatty and full of energy. ( take note I clean my house ). My crash in 3 days is a crash. I can feel myself start to unwind. Boom. Then my counts are low and my body works itself back for next infusion. Tomorrow is my 3 of 3 for this month then vacation for a week. I have had 6 total so far. At least this stuff is working as I dodged the kidney stents at this point ( cancer wrapped around ureters causing pee to back up into kidneys ). Taxol is loosening cancers grip. 👍👍💃💃
I don't get the numbing agent for the port either. I figure that is the least of my concerns. 😎. I am now just happy I have a port that works, stitches and all.
My night after infusion sometimes includes restless legs. I usually get some sleep.
I just downloaded some new books too. Nothing like a good read on steroids.
Best to all. Keep on... Keeping on. Yep
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Good Morning All, and Welcome to the newbies - I'll say first that I have been on this journey for 5+ years and Taxol has been my favorite, if a 'favorite' in this game is possible. We're on a great drug that efficiently does its job with minimal s/e! Just relax and let it do its thing...
Brigadoon, I swear you live on a Hollywood setting somewhere...honestly, each photo brings me such peace. Please continue to share. Are the trees starting to change in New England? Looking forward to some beautiful fall photos!
Finally, just a quick comment on the Benadryl. I was a new person, with even less s/e, when my Onc and I talked and I stopped taking the steroid pill the night before and he cut in half the dosage of Benadryl and the 2nd steroid prior to the Taxol. I also take 2 Tylenol prior to the Benadryl, as it really minimalizes the RLS. Now I only have 1 day of severe red face and 'chipmunk cheeks' instead of 2. Benadryl instantly affects my eyes - does anyone else get that? as they become blurry. I close my eyes for about 15 minutes (short nap, some call it! lol) and feel normal after that. I still get the steroid high and get a lot done, but Sunday afternoons are definitely nap time, as I get treatment on Friday mornings. Shazza, nobody better mess with my Fridays, lol! You got me thinking, and I'm going to touch base with the scheduler this Friday...maybe bring her cookies? I want to stay on her good side!
Have a good day, everyone.Laura
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Brigadoon,
EXACTLY what you said. I felt giggly and spacy with the benadryl and only was able to focus once the RLS kicked in. Then I took a xanax for the RLS and was giggly and spacy again.
Benjnate, Thanks for sharing the tylenol tip. I am doing it tomorrow.
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Brigadoon, How's things the last few days? This is my week off, so am just pottering along getting back in the swing of things after being sick last week. I used to get squirmy, dramatic RLS during infusions, but seem not to anymore. I swear, I almost jumped out of the chair once, it was so weird feeling. I never got it at night, though. I have nails loosening on one hand, so am keeping them short, polished and am vary careful not to use them for prying anything up. I am so glad Taxol has been helpful, but I will not miss it when I move on to Aromisin or Faslodex, which was the plan a e months ago.
Take care everyone and get the rest you need while having as much fun as possible. ; )
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So it looks like I'm having a MRI on my spine @ 9:30 and then chemo at 1:30 on Tuesday this week, so I'm going to have to take the day of work regardless. I shall use the time I between harassing people about my chemo appointments.
Not sure who to blame about that muck up. I'm the only patient they have on long term taxol and I think the oncology team may have forgotten to roll me over as it were. I also know from a friend that works in oncology that they have a new scheduler who has caused chaos with people's appointments recently.
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Hi
You have good inside information ShazzaKelly, I would pester them if you have the energy and ask to speak to the admin manager, you have good reasons to be put back on your old schedule. Good luck with your MRI!
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Benjnate, The tylenol worked for my RLS! thank you so much for posting about that. ShazzaKelly, I'm sorry you are going through such an unnecessary hassle but good luck with your MRI!
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I have been trying to find a moment to post but keep getting interrupted. I have the family visiting at the moment including my 2 year old grandson so I have been pretty busy. I just wanted to say hello to the new faces here having weekly taxol.
Shazza, I hope you can get your treatments back on your usual schedule. Weekly therapy is a big commitment. Having our treatment times messed with causes chaos and frustration that we could do without. Fingers crossed your MRI is unremarkable.
I have my week off this week and I am looking forward to not going into hospital for a change. No offence to the medical profession but I am sick of doctors. My onc had me down for my bisphosphonate this week but I postponed it to next week without consulting with him. I cannot see the point of going in just for a 15 min IV. One week's delay isn't going to make that much difference.
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ShazzaKelly, good luck with MRI.Christina
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ShazzaKelly - Hope your MRI is boring.
MameMe - I have been okay. Had a few more SE's this round: a little D a little C and some nausea. Also have had a little sore throat and more bone pain. Am sleeping better so that is a plus. My nails seem to be doing well. I think my hair is growing again. It seems thicker and I can't see my scalp as much. I have an appointment with hairdresser tomorrow. Will ask her if she sees new growth. What I have needs to be shaped so it will all fit together. I never shaved it so I have some hairs that are really long and then the stuff that I think is new.
I have an appointment with my general surgeon on Tues. I had a hernia operation last year and it seems that there is a stitch in my abdomen that is causing a restriction. Didn't bother me much when I was thinner but the steroid belly fat seems to be putting pressure on it and it pulls all the time now. It feels like a knife in the gut.
Dr. did tumor marker blood test at my last appointment. My last one was 31. I am so worried that it will have gone up. I am doing so well on Taxol and don't want to have to change to something else.
Has anyone else had tumor markers go up and still remained on the treatment? I just keep thinking ANYTHING can raise your tumor markers and am not sure that it should mean a protocol change. TALK ABOUT BORROWING TROUBLE!!!
Okay, I have said it and now am leaving that worry alone.
Beautiful day here. Sunshine and low 80's. Going to hang clothes on the line and do 1/2 hour gardening. GOALS, Jeanne, GOALS!
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Harrysmom, I'm glad the Tylenol worked for you. And Shazza, I'll be thinking about you tomorrow during your MRI.
WBC were a little high last Friday before chemo but nothing major per the nurse...is that possibly why I'm taking a few catnaps a day and sleeping solid through the night? There really is no 'treatment' for WBC except healthy living and meds I guess, unless one of you know a magic cure?
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so good news everyone. I managed to get all my appointments after today moved back to first thing in the morning. That's a real weight off my mind
It was a long day with a noisy but uneventful 45 minutes in the MRI machine then afternoon chemo where my drip played up from start to finish. At one stage there was so much air in the line heading rapidly towards my port that I clamped it off and called for assistance. They also had a fair bit of trouble accessing my port which was no fun. Never mind that's no 47 done and dusted.
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Shazza, Good news on the appts. Hope they are clear that they need to stay where they are and can't be changed again. When do you get your MRI results?
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Springwatch I'm not sure when I'll get the results of the MRI. Maybe not till my next clinic in 2weeks. It was a extra test ordered by my Onc because I have been having some problems with my sciatic nerve. Just my spine getting checked and I'm not expecting it to show anything new. My regular CT is due mid next month and I was happy to wait till then. I think he is just being extra cautious.
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Shazza, Better extra cautious than ignoring your symptoms. Fingers crossed there is a straightforward answer to your sciatic pain and a solution.
I've got my scans week after next. Just waiting for the appointment to come through. They are very good at the place I go for treatment and the results are available 48 hrs later. However, my onc likes to give me the results himself - he won't delegate, so I will have to wait until the week after the scans for the results as he is on holiday. I will probably get them when I come in for #21.
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Hi Springwatch,
It is probably different in the UK, but it is little known in the US that the medical records folks are required by law to give you results (if they are in) regardless of the doctor's say. During my staging scans my doctor was slow to respond and I really didn't want to wait. The danger is that you can read stuff that they feel you might not understand and get panicked. I didn't care, but I'm pushy and I hate waiting for anything.
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Harrysmom,
I wish it was that simple over here.
My last set of scan results were available on a day when my onc was away at a meeting. Being really anxious to find out, I asked the nurses if I could have them now. They in turn asked the dr. covering my onc's clinic to get them. He contacted my onc to see if it was all right for him to give me my results. My onc wanted to give me them himself so he called me from his car. Unfortunately, the signal was appalling. The line kept breaking up and I learned nothing from that phone call. Wondering if he charged my insurance company for it?
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