Weekly Taxol group
Comments
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Tres - I've also had no appetite on Abraxane. It gets a little better as the week goes on. Does any food appeal to you?
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Leigh - school has started already? That is early.
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Louisiana school system is INSANE... LOL We start earlier and earlier every year. Today it will be 105 with a heat index of 118 and those babies are in school with crappy AC. It all has to do with all the stupid testing they do. They have to have so many days to prepare for those test. They get 3 weeks of for Christmas and get out at the end of May.
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This is the last week for Allison and me. We both finish on Tuesday!!! 😀🎉🎈
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Hi Cathy! For a while the pain seemed to be everywhere -- it kept moving and jumping from place to place, but mostly in the joints (back, hips, knees, ankles). I'm a week out now and it seems to be mostly gone, hallelujah! I did call last week, and they recommended higher doses of ibuprofen, which mostly did the trick. They can't give me anything stronger while I'm on the road, but maybe at my next visit once I get back home...
Tres, so happy to hear the Abraxane went well -- what a relief!
Take care all,
--Sherri, aka EnigmaticFox
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Oops, I was on the wrong page before. Sorry you're feeling sick, Tres!
Yay for the last dose, Karen and Allison!!
Take care,
--Sherri, aka EnigmaticFox
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Leigh: That would drive me nuts. I wish they would start here after Labor Day and end later. It doesn't even get warm here until July 4th. So we get like 1.5 months of summer. We go back Aug 25th. And I noticed ALL the prices on airfares and resorts drop literally THAT day. But we do only get 2 weeks for Christmas. Any more than that and I don't know if my kids would still be alive. I remember (I think) it was two years ago. I was tucking my younger daughter into bed the night before they went back to school. Someone had given us a small cake as a gift. I found it under her bed with the icing eaten off and a huge mess. It was just a good thing they were going back to school the next day.
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Karabesque
I had and still have the red and swollen feet which started around Taxol #3. They continue to be this way with every tx. I dont have any numbness in my heels but my toes on both feet are now totally numb. This also started #3 tx. I dont even have the desire or energy to give myself a foot rub.
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hey, you guys who are having numbness and pain in your fingers and toes: You're talking to your MO about this, right? They should be adjusting the Taxol dose down to make sure you don't end up with permanent nerve damage.
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I strongly agree with being sure your MO knows about your signs of neuropathy. I had my dose held, then reduced by 20%, then restarted and when my neuropathy returned they stopped the Taxol. My MO was very clear that she did not want the neuropathy to worsen or become permanent. You cannot push it too far. I finished 9 doses and she said one more was not worth permanent neuropathy. I am relieved she did not go too far. I am 3 weeks out from my last dose and while the symptoms are improved, they are still there. I know this may improve over the next few months but I am glad I do not have more Taxol in my system at this point. I should note that the symptoms I am feeling are significant. Started as numbness in toes but quickly progressed to pain in toes and shooting pains from my knees to the arch of my foot. More concerning I had weakness in my legs and my gait was clumsy.
When I went in for my treatments, they check vital signs, weight ask about fatigue but never really asked about signs of neuropathy. I had to keep mentioning it.
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I still am not sure why they are giving DD taxol?
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I am also doing reverse. Wasn't going to, but because of an incision issue from my mastectomy, the PS and MO thought this should be the route to go. I will find out for sure on Thurs and will start next week
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cloudynight
My MO has been aware and he has not cut my Taxol down at all. All 10 toes are numb and now it is starting in my fingertips. I call MO today and told him I will not be going in for #9 this week. He wanted me to and said he would cut it 20% but I feel the numbness is really severe and I need the break. I have no appetite and am losing weight and on top of it all even with a sleeping pill I cant get more than 4 hours sleep each night and there are no steroids given with my tx. Last week I weighed 96 lbs. I cannot afford to lose any more I am scared and getting very depressed.
I am in the midst of changing hospitals and hope it will all come together within the next 2 weeks if I survive these treatments..........I am very tired and fatigued.
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Anew-Thank you for the validation about our feet. I am sorry you are having such a rough time. I hope the switch of hospitals gives you what you need. I hate to say it but maybe you could take an antidepressant. Even is it's temporary. I've been considering it. I have some from when I was on Tamoxifen. I think it's a band aid but sometimes a band aid allows for healing to happen. Good luck to you.
I rarely see my MO. The cancer center is so busy, I often see a NP. I told her the last two times about the numbness but they don;t seem too concerned. I threw up tonight for the first time since starting chemo. My body simply rejected the food I was eating. I will be calling the doctor tomorrow. I am still extremely achey and numb feet and tips of my fingers, It hurts to type. Maybe I have a bug? again....
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Karabesque
Im sorry your feeling so lousy but be sure to call your MO today. I called my MO yesterday and told him I will not be coming in this week, my body just needs the break and I hope that will make somewhat of a difference for me. I need to try to build myself up some. Your MO sounds like mine with the numbness because I've been telling him for weeks and he just asked if I was tripping over my feet and when I said no he said "let me know if that happens". Why wait? When I told the NP last week she was more concerned! When I see my new MO I will talk to her about an anti-depressant. Let us know what your MO has to say and I hope today is a better day for you.
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Today is the DAY!! Allison and Karen!!!!!!!!!
WOOHOO!!! I wish I could be with you on your day!!!!!!! I will think of both of you all day today!!!
Walk away from those stupid infusion centers NEVER to return!!!!!
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Thanks, Leigh! Your day will be soon.
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regarding your MO reducing your Taxol dose due to neuropathy. My MO refused as I only had two infusions left. My final Taxol was on 07/30. I can't feel my toes and my feet are STILL swollen. Needless to say I'm very unhappy. I can't wear normal shoes and when I wake up in the morning I can barely walk. I have to walk down the stairs one step at a time on each step. Later in the day my mobility improves, though the swelling gets worse. Honestly, I think I just get used to it and deal with it. Which is what my MO thinks I should be doing all along with my complaints.
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Mary: Have you thought about changing docs? I am changing. I wouldn't put up with that doctor disregarding your issues. That's just wrong. I am thinking about writing a long letter to the hospital administrator about every negative experience I have had during this whole time.
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Only 2 more weeks left for me then onto AC
I saw oncologist Friday and got a script for T3s and also gabapentin to either offset or manage the joint pain I get starting late day 2, peaking day 3 and sometimes lasting into days 4 and 5. We will see. I just need to get through this week and 2 more.
And it's working. Oncologist thinks tumor is less than half it's original 9cm size and most is in the upper area and under arm with almost none in actual breast. Looks like surgery may be possible depending on how AC goes.
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AJ - glad you are skipping a week - I do hope they lower your dose - you will get some good healing in a week off, even mentally, it's a great break.
KB and Alison - LAST ONE!!! YAY!!!!!!!!
Just got home from #8, only THREE LEFT.
OH!!!! If you get hot/cold temps feeling TOO hot/cold, when you know they are not REALLY that hot (for example, hot water in my sink feels TOO HOT, or my showers are TOO HOT, or frozen ice packs/food is TOO COLD) - tell your MO!! That is one of the side effects they monitor! I never mentioned it to the nurse because they always ask about numbness/tingling/pain/pins and needles!!
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Allison - I wish I had made the change earlier. Why I waited so long is beyond me. I think I was just overwhelmed. I called over today and they gave me a prescription for Lasix. I'll start that tonight. Of course they prescribed the very minimum dose you can take.
Congrats on your last taxol!
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Congrats Alison and Karen! So happy for you!!!
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ninja, glad they gave you Lasix. I hope it helps. Hopefully they told you to take potassium while on Lasix.
I hope everyone dealing with neuropathy gets taken seriously.
Allison, Great big HIGH FIVE!!!!!
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Right back at you, Karen!!!
What is lasix?
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Lasix (furosemide) is a diuretic used to help with edema
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Allison and Karen - WOOOOOOOHOOOOOOOOOO!!!!!
Congrats to you both 👏👏👏👏👏👏👏👏👏
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Edema is the swelling I am assuming?
I am already having tingling today and a hot flash even as I type. Trying to increase water.
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The Princess
Now we will be on the same schedule! I hope your right aboout healing this week, I need my sleep and have to try to eat as much as I can. I will be changing doctors too!!! My feet should never have gotten to this point, now its in my fingers already. I hope your tx went well today
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Ninjamary
I feel my MO pushed me too hard. I really believe another tx tomorrow would practically kill me. Im glad you got through yours ok.
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