Weekly Taxol for Stage 4
Comments
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Pat I'm on 3/1 and it made such a difference! I'm still dealing with neropathy but I have more normal days now. Fatigue Ugh! 6pm I shut down, blank out on TV. I freeze then flash...don't know what to do this summer!
So funny Jennifer...hubby stands guard making sure I get every last drop lol. I've read that some do rads and chemo, why not! Xoxo Jo0 -
Pat I'm on 3/1 and it made such a difference! I'm still dealing with neropathy but I have more normal days now. Fatigue Ugh! 6pm I shut down, blank out on TV. I freeze then flash...don't know what to do this summer!
So funny Jennifer...hubby stands guard making sure I get every last drop lol. I've read that some do rads and chemo, why not! Xoxo Jo0 -
I'm on 3/1 and doing well so far in my 5th round. Onc suggested I go 3/3 since I'm doing well. I panicked, "no, no, no!" I am afraid to reduce treatment. I countered with one more 3/1 since travel plans are set based on that schedule and agreed to try 3/2 after that. I told him I'm a chemo junkie and afraid to reduce. If it's working, why mess with success!! The neuropathy isn't too bad and I do take neurontin and it helps a lot. I'm hoping for a long run. TM's were down last time they were measured and tumor was stable. Jenny, I think presenting onc with the radiation option is a good idea!
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Glenna, I'm curious as to what your neurontin dosage is? Is just upped mine to 400mg. Do you. Mine sharing how much you take?
Thanks,
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Pat,
The prescription was written for 300 mg every 8 hours. I cut it back, with onc's approval, to 1 300 mg in the a.m. And 1 in the p.m.so 600 mg total per day. It was making me really tired. I still experience minor neuropathy, especially left foot, but it hasn't gotten any worse as treatment progresses.0 -
Thanks Glenna. I take all 400 in the eve and here I am still awake at almost 2 am. Guess its not making me tired. :-)
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Oh, I said making me tired ... I didn't say helping me sleep. The opposite .... Tired all the time but unable to sleep!! I close my eyes and no matter how much i feel i need a nap, no sleep comes! that's why i don't take it 4x a day! I'm awake, too, but from the decadron today.
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I had my infusion today so also had some decadron. I'm glad you quantified the word tired. It explains what's been happening to me. I feel dragged all the time yet just seem to nap all the time with no real sleep. I don't have any small children so I can camp out all day but I'm just a slug. Must be the neurontin. I thought it was related to the disease progression. I'm feeling better about it being the drugs. Thanks. Also, thanks for the company at 2am. ;-D
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I get through the night playing wordament. Someone on BCO introduced me to it but I don't remember who. Also addicted to words with friends. Last week I was awake til 7 in the morning. Tonight I'm hoping for sleep soon!! Took some sleep meds and starting to feel like I "could" go to sleep!! Good luck tonight. Hope you get some rest!
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Glenna, it was Ebru who introduced Wordament
. I've got my whole family addicted.Sorry if this is an issue that has been discussed before, but my hair is growing back. Which is great, but not if it means the Taxol is no longer working. Anybody got any experiences/insights? I've just finished week 15 and have been on weekly treatments with the exception of this month where I've skipped a week.
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Anko,
I've started to develop some Taxol resistance and my hair is growing back too. My infusion nurse thinks I'm crazy to believe that the two correlate, but there it is. My TMs are floating up at about 10 points every three weeks.
So here's what I think: just keep an eye on it. If your TMs are accurate, make sure they get drawn. Be suspicious of any symptoms. Hey, that's what we always do anyway!
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Jennifer, thanks for being straight rather than trying to fob me off. I will keep an eye out for other symptoms. Just had good scans a couple of weeks ago...never a dull moment with cancer...
Anybody else experienced hair regrowth and chemo resistance? I suppose nobody has ever done a trial on that...
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I was on taxol for 8 weekly treatments my hair thinned out but I never completely lost it. I am now on Abraxane 6 treatments so far and my hair started coming out more, so my husband cut it and now I have the g.i jane look. I don't know why Im not completely bald yet.
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Anko, the same is happening to me, my hair is growing back on my head and bit of stubble on my legs for 2 weeks now....I'm worried, onco said I have tomorrow and next week then I'm done with Abraxine. Continuing with hercepton every third week for life but seems that's it for me! I had a scan last week that showed "significant improvement" in my liver but what does that mean...he didn't say stable and I don't see him till mid June. I don't know what to do at this point. By the time I see onco I'll be off Abraxine for 6 weeks....
Hercepton question....is there a protocol regarding frequency of ECG for heart while on hercepton? I had one in January/13 and asked Friday about next one and was told there isn't!0 -
Heya ladies -- I too am stage iv and on taxol. It (along with herceptin and perzutumab) were actually our first line of defense; I don't respond well to lapatnib and all first line trials available that we have access to use lapatnib. Right now, I'm doing 3 months (second treatment in; third on Thursday) of taxol and then a scan to see where to go from there.
It sounds like I have a mash up of the symptoms everyone else gets (I've been on taxol before): fatigue, body (bone, muscle, skin, and joint) pain, nausea, loose bowels, chemo fuzzy brain, low body temp (though sometimes I do get night sweats, fun), hair loss, etc. Taxol's not the most pleasant, but we know it works and right now I just want to shrink these tumors!
Stay strong ladies -- as I keep (hopefully rightfully) telling myself: side effects mean it's working, at least a little!
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Joanne, when I was on herceptin it was a three-monthly ECG. That's great news that you'll be off Abraxane, and just on herceptin. Perhaps your oncologist wants to see how you fare on just the herceptin.
Hell Rinneron, taxol is really doable isn't it. I still complain lots though!
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Taxol is working for me. TM's dropping, last CT showed tumor stable and I still have my hair. It has thinned some, especially in the back because of sleeping on the back of my head. I have been on other chemos where hair has started to re-grow before cessation if the chemo. Hope this helps.
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Thank you ladies! Jo
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Jennifer/Ladies hello,
Jenn I'm the newbie with the cattledogs. Just got my diagnosis Tuesday and start on Taxol this coming Wednesday. I get my lovely port on Monday.
I have stage IV of course in both breasts and lymphs with alot of bone mets and tumor in the liver. I haven't seen anything in writing so I don't know all the fancy stuff just something about HER+. I'm not clear what that means.
I feel like Wednesday is going in front of a firing squad but I'm not going to get bullets I'm going to be tortured first.
What a nightmare. And my baby red girl is still at the vets (2 weeks) recovering from a torn ACL.
One day I'm fine and the next, like today, I'm terrified.
I hate this weakness I feel, especially when I read how strong you all are. Guess I better just get ahold of myself.
I remember on the other thread one of the ladies reminded me that this is not my Mother's chemo, but those memories just keep creeping back.
Would you mind sending me your strength. I have chemo class today.
I can't help but see myself walking in as a normal person and coming out a wreck.
Sorry to vent so...but thank you for being here.
Shoot I still haven't told my family. Just how do you drop that bomb?
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Hello Johns!1, and welcome. Sorry you have this diagnosis. I think nearly all of us feel weak and vulnerable, especially so soon after hearing of the disease. Strength ebbs and flows. You will have many good times yet to come, and there is comfort and strenth in that. The fear is very real, and sometimes pushes to the forefront. You will find strength to get through each day--sometimes each hour--sometimes the next five minutes--but you will do it. My daughter went with me to the infusion room, and later said she was reassured to see that it didn't appear nearly as bad as she had pictured it. Good luck!! Tell your family when you're ready, in whatever way is least difficult for you. Wishing you the strength to deal with the difficult times. Although it seems impossible now, there still will be happy times, too.
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Johnsie,
Sounds like you are ER+/HER2+ which means you'll start with Taxol and Herceptin. Both are very tolerable, and the port will be your buddy. I hate sticks, so I loooooove my port.
We may sound strong, but we sure as heck didn't start that way. Diagnosis will bring you to your emotional knees, especially if you have always prided yourself on being strong and independent. Quite simply, you can't stay that way through every aspect of your treatment, and THAT is the scary part. But, I've had an ACL replaced, and let me tell you, your girl will be in more physical pain that you will. Treatment isn't really painful anymore.
On your worst chemo side effect day, you'll feel like you're coming down with something - like getting a stomach flu before you realize you're truly sick? So, you'll grab an anti-nausea tablet, and maybe some painkiller if the mets are barking from tumor flare (the pain that starts at the first part of treatment indicating the chemo is attacking the met and is winning!), and you'll hit the sofa like the mighty hand of god. Make sure you have some good books handy, and DVDs if you like to veg out to TV. Be Nice To Yourself.
Your hair will start to go about Day 21. You'll know because your scalp will start to feel tingly. Buzz it if you like - it reduces shedding clean up, if nothing else. Most of us have Taxol fuzz, which mitigates the shiny scalp, somewhat.
The combination of Taxol and Herceptin should do amazing things for you. Have you had treatment before? If you haven't, you are what we call "Chemo Naive", and your naughty little cells will fizzle away.
Who is around to help out on your crappy days? For the first few chemos, untill you know how you are going to feel after (the pre meds can make you quite drowsy), can someone give you a lift to and from chemo? I've never enjoyed having a chemo buddy with me the whole time. I'm Southern enough to feel like I have to entertain them, and chemo should be all about YOU. And, the few times my spouse has come, I've ended up kicking him out. His face looks so concerned - yikes. My best chemo buddy was my 13 year old kid. He entertained himself, didn't interrupt my nap, and fetched me beverages tirelessly.
I emailed my family to tell them. Such an antiseptic way to spread the news. That way I didn't have to deal with tears and drama. They pulled themselves together, emailed me back, and sent lovely gifties. Perfect.
Keep us posted. Thinking about you, and wishing you the best Tuesday and Wednesday.
Jennifer
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Almost half way through the 6 months of Taxol now and the fatigue increases. Started getting some neuropathy in my finger tips, but it's just started and is not bad. Will definately discuss Neurontin and B6, B12 with my onc., thanks for the tip.
My hair has thinned - but how is this - 1 eyebrow is gone and the other is still half there! It looks pretty strange. Still have eyelashes. So I didn't cut all my hair off yet - just trimmed it to 1 length, short, but not shorn (I've always worn it short). It is getting patchy, but I'm too tired to really care about that now!
Glenna, I get the big D too - started last year after chemo and have never gotten a hold on it - it stopped for about 10 days and I put on a bit of weight (much needed), but it's back now and am losing the weight. Also use Immodium or Lomotil, which helps. Then I'll do the BRAT diet for a couple of days or so - Bananas, Rice, Apple sauce and Toast (dry) - that sometimes helps.
Great to hear all your experiences with Taxol, I'm also tolerating it well - will have another cat scan done on May 9 (halfway through treatment) to see what's going on in my lungs and if it's working, so am very hopeful it'll be good news!!
Either way, I'm scheduled to end the Taxol at the end of July and I want to go over to Israel and visit with my son for a month or so in September, so I'll look at taking a break from chemo then. I guess we first need to see what the scan shows.
I still manage to do 2 yoga classes a week - one on the day after chemo when I'm still full of steroid energy! So how bad can it be? My biggest se is just the exhaustion - like my head is just too heavy for my neck and sleeping doesn't make the fatigue better. Oh, and the chemo brain - I've lost 3 sets of keys in the last 6 months!!
What a journey this is.
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Thanks Jenn and ladies.
Johnsie - I like it. It made me smile.
I found someone willing to take me to my first chemo. Independent yes and that is crushing me to have to ask for help.
Never had treatment before so yes I'm "Chemo Naive".
I work full-time at Lockheed and have taken FMLA but I can only miss so much time and if I don't work the bills don't get paid.
What has been your collective experience with trying to work through Taxol chemo?
I think it is the unknown that is bringing me down because of course I'm expecting the worst. Had chemo class yesterday and the staff was very nice and informative but I can't help but think they are the most optimistic people in the world.
I guess I'm old enough and set in my independent ways so strong that this change to my lifestyle is bothering me more than anything.
Yeah whining about something that hasn't happened yet - sorry.
I'm somewhat forced to be resolved this treatment because the pain from the bone mets has really increased in the last 2 weeks. I re-injured my broken rib last night changing the sheets on the bed and good Lord it hurts. I thought it was almost well but noooo.
There is this little kernel in the back of my brain that keeps trying to be heard saying "Oh hell no we can beat this nasty little crap back!"
I really do find strength among you - so strange because I'm so new.
I have to be strong in the face of my co-workers and friends; it is here I can let my guard down and vent my fears.
I promise one day I won't always be the weak link and might actually be able to help others as you have helped me.
One more question and please don't roll your eyes.
What about beer? I'm a serious beer drinker - hell I'm from Texas - so is that possible with Chemo?
My red girl Scully gets to come home next week. I'll feel better having all my kids where they belong.
Thanks again to everyone.
If this goofy weather would work itself out I could talk about my garden and who all wants home made pickles. I have baby tomatoes coming on too.
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If I was in good shape when I started this chemo I'm pretty sure I could work. But unfortunately, I had just spend the month of Feb in the hospital with 2 blood clots and 2 liters of fluid in my pleura and have been fighting to get strong, so work is out for me now. I am having some neuropathy and a bit tired but that's it for se's. Very doable. I hope taxol is as easy on you.
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Johnsie,
Say good-bye to beer this weekend. It's not a great idea during chemo - there's only so much one liver can do. Have a Rolling Rock for me. When you move on to anti-hormonals, the occasional drink becomes possible. Some of the non-alcoholic beers are OK. I like the dark O'Douls. Really cold though.
If you have your infusion on a Thursday, most of the fatigue will occur over the weekend, so work is possible. Aim for Thursday morning - that way the steroids will start fading Saturday morning, and you'll feel draggy through Sunday afternoon. Plan big activities for Thursday afternoon and Friday, as the steroids make one feel like Superwoman. Moved a huge mulch pile yesterday, and wanted MORE.
My biggest problem is getting to sleep Thursday and Friday. If you let the steroid rush mess with your bedtimes, the fatigue is worse. So, I take Ambien those nights, to shut it down. I've been known to need up to 10 mg, on top of the pain meds, even though the lady dose should be 6.5 ish. And, I'm on a reduced steroid dose!
You will like what the treatment does for the bone pain. Mine faded within two months. Rolling over in bed became possible. I could take baths again instead of showers. That was good.
Just staying vertical makes us strong. No judgement here - ever.
Have a lovely weekend. I'm mulching out, and cleaning up. Spring was late this year.
Jennifer
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Johnsie,
I'm traveling and just took a break to catch up on BCO. Great advice you've received from other taxol users. I still have my hair and have been on low dose taxol since December. Weird. Anyway, welcome, I know you don't want to be here. Your strength will come, little by little. Right now, let yourself exist I whatever emotional state you are in. It's natural and we've all been there! Hugs!0 -
I'm the husband of a diagnosed Stage IV BC patient (met to spine and one node). I know this isn't my forum, you can delete me if you like. My wife had a near death experience with Taxol. Her first session went ok then a few minutes into the next she went into spastic shock. God was I scared. They tried A-C which seems to be fine with her.
Oh yes, my wife went into shock and had to be rushed to the ER over her Neulasta shot. Oh, did I mention her 13 cm ovarian cyst that had to be dealt with in the midst of her chemo. Ops, forgot her severe staph infection from the ovarian operation. Despite this mess she is almost NED. Let's hope and pray she stays NED.
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Praying with ya, Mike.
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Praying with and for you and your wife Mike. As to the beer question, I told my mo that I had completely given up beer, she told me it was ok to have one occasionally, it won't hurt anything. So maybe Once every two months or so I'll have one and it always taste so good.
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I am getting a chemo break this week....yes! My feet were screaming for one. I have terrible neuropathy in my feet. Luckily there is no pain involved as long as I stay off my feet. I am now taking 900mg of neurontin but so far it's not clearing up. It has moved down my foot. It starts about the arch of my foot(both top and bottom) and goes to the ends of my toes. The balls of my feet and my toes are the worst. I am praying that this goes down a lot more before next week when the taxol starts up again.
Pat0
