Weekly Taxol group
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Martaj are you pushing the protein? I found it made a big difference even when I was only doing Herceptin.
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anyone here that has total opposite SE’s with Taxol? I completed 4 AC and had my 2nd taxol weds and feel like death. I had horrible horrible body pains with the 1st Taxol and back and stomach pains so bad it felt like 24/7 contractions. Been down since Sat with this mess again. Is there any hope or tricks that I don’t know about? I knew for how my body reacts to stuff that it was too good to be true when they said this would be easier. I’m going into the office today at 3:15.
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Our MO had my wife take Pepcid for stomach issues. It really helped. We do #10 tomorrow and nothing to severe at all since Pepcid. We did Claritin for bone pain on AC. Praying it gets better for you!!
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jjpope1: I feel your pain. I had the exact same reaction. The MO lowered the dose after my first bad reaction but that only meant I had 80% pain instead of 100%. AC was not easy, but to me, I would opt for it any day over taxotere and taxol. I completed three out of the four infusions and have decided not to do the final infusion. I'm moving on to radiation.
Ask your MO to lower the dose. Try taking Aleve/Advil/Tylenol regularly a day or two before the treatment and afterwards to see if that can help. Use a heating pad on my big bones and abdomen to try to help with the pain.
Good luck and I hope you can get it under control.
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jjpope - Taxol has been hell on me pain-wise. I had severe pelvic contractions with heavy bleeding for over a month. Also have severe bone and joint pain.My MO gave me hydrocodone. I take 1/2 a pill and that's enough to knock-out the pain. I make sure to only take it on the days after the steroids have worn off so as to not form a dependence on it. Tomorrow is my last infusion (#12) and I am so glad to be done
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Tired... so tired and a rash that itches on my arms and legs. I also have a little neuropathy in my left big toe and soreness in the area where my nodes were removed and where my right breast used to live before surgery.. One more taxol and I am done. Hair is starting to fill in and starting to get eyelashes and eyebrows back so excited about that. How is everyone else doing?? I know that we are all getting close this week. Thank goodness it will soon be over and then I move on to radiation.. Who else is going on to radiation next and who is having surgery?? Sending good wishes to all of us finishing this week.. Wheatscapes, Happy Anyway, Jrom (soon).
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did anyone have liver enzymes jump a bit in Taxol
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mpr459, I have 4 more taxol, and 1 more carboplatin, then on to 4 doses of AC, along every three weeks trial drug. Surgery in December, radiation after. Hopefully the new year will bring a new start of cancer free. Trying to keep positive.
Flo80, my liver enzymes were slightly elevated also, drink plenty of fluids, check what medications you take. Some increase LFT's.
Today will be a better day. I feel somewhat better than my horrible day yesterday. Hopefully no more vomiting and nausea. Compazine did not help. If it continues will call MD. Yesterday was my worse day ever. On to number 8 infusion Friday, only taxol, not carboplatin and trial drug. very weepy today, that too will pass I hope. Going to try and walk the beach later if my strength allows, and nausea passes. Feels like my muscles are atrophying. Have no energy. Chemo brain in full force. Tried to grocery shop yesterday, mistake, forgot half the things I needed on list. Thank god for take out or my hubby cooking. I can't taste anything so have no appetite but force myself to drink and eat proteins. I just keep thinking only 4 more taxols. Only 4 more taxols, but then on to AC for 4 infusions.
Keep positive everyone, I'm trying but like you folks you know it is hard when you feel like shit. I've always been healthy and active I think that contributes to this feeling of not being able to be me. Good news is my sores on my bald head are almost gone.
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Mpv459, surgery is next for me. It hasn't been scheduled. Ugh.
I feel fair mentally, exhausted physically.
Hang in there, everyone.
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Hi everyone! I had my last Taxol today, the 5 month trek in chemo land is over!
I had my surgery already, so for me rads are next, I will see my RO next week to find out the détails. And i will start Aromasin at the same time as rads (3rd or 4th week of October). Plus, Zometa infusions twice a year.
My MO is hoping that by the end of the year there will be more research data on CDK4/6 in non-metastatic setting. If the data is favorable, she will add one of them to the mix.
Jjpope, i had some body aches after Taxol 1 and 2, but they went away; I still get an odd sharp ache now and then, esp in my knees when going down the stairs or hiking downhill:) Luckily, they are short lived. Daily pantoprasole, 40 mg, has been an answer to my stomach issues, just wish i started it earlier.
Hope everyone is having a nice day, with no a minimal SEs.
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Woo hoo LaCombattante!! I go in this afternoon for my final Taxol also. Can't wait to be done.
Martaj, sorry you aren't feeling well. If you have a hard time getting enough fluids or have severe nausea, ask your doctor to order fluids. I needed them during AC, because I just couldn't eat or drink enough during the days following the treatment and shot. So when I went in for my shot, I got a bag of fluids also. It really helped, and we didn't have to worry as much about dehydration!
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thank you so much
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that’s great Mariah how much was your tumour size. I am done with Ac and two dose dense Taxol. Have two more Taxol and I am done
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Huge congratulations to those finishing! That is quite a feeling!!
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St. Auggie---I have thought I look eerily like my dad as well, both with a shaved head and as it grows back. I am going out and about with it now, but it is still very short and my high forehead is still very prominent...Great news about smaller/disappearing tumors!! And On being finished (today?)! St. Auggie.
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I’m finished! Taxol #12 completed today! I got to ring the bell. My hubby, next door neighbor and friend were there to see me do it. I still have 9 months of Herceptin to go. Does anyone know if I will still be given the pre-meds (including the steroid, which I don’t like) before the Herceptin infusions? I forgot to ask my doc today. I hope not.
Congrats to LaComb, StAug, Happy, and those soon to finish (mvp, jrom). Hope I didn’t miss anyone.
Besides Herceptin and Tamoxifen, I am done with treatment, I had a BMX so no rads for me. Especially with the ATM mutation - we ATM mutants don’t do well with radiation.
It is a good day. I’m exhausted. I’m glad the Taxol and Cold Capping are over!
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I had my radiation simulation this Monday and start treatments next Monday. I will have 30 sessions over six weeks. So glad chemo is over!
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Lois, the hair is wild isn't it? Seeing my dad in the mirror...it's particularly awkward when getting out of the shower! Hahaha!!!
Yes, I'm done. Congrats to everyone else who finished up today! We did it! I rang the bell, and said BYE Felicia!!! 😄
Surgery is the next step for me. Still struggling with those decisions and which path to take.
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WOOT WOOT for Wheatscapes and StAuggie (and all others who recently finished)!!!! Wheatscapes--I answered your question over on the other forum.
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Congratulations to all finishing up their Taxol treatments!! I’m sure it is such a relief to be done with it.
I had my 3rd AC treatment today. But when I saw my MO I got the date of my first of 12 weekly Taxol treatments I will be starting Taxol October 23rd. And I want to be prepared. I see that many of you use cold therapy on your hands and feet to avoid neuropathy. I am a pianist. So it is particularly important to me to avoid neuropathy in my hands.
What products should I be buying to facilitate cold therapy during treatment? I asked my infusion nurse about this today. And this is not something done very often where I get my infusions. So I am relying on you gals to steer me in the right direction. Also, if the infusion lasts an hour, do I need two sets of whatever I buy to get me through the full infusion?
TIA for any help you can give me
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Hi Snaffle. Only one more AC to go?? Excellent!! Taxol has been SO much easier on my wife. She completed #10/12 Taxols yesterday. She has one sharp pain and a tingle in her big toe in the past 48 hrs and that’s it for neuropathy so far. We ice 15 before, then the hour of Taxol, then 15 min after. Her toes and fingers are like ice but no neuropathy to speak of. We did buy the fancy cold socks but we couldn’t get cold enough. Our center has plastic medical bags. I prepare them and she then places her hands and feet in a flap on the bag. She does wear super thin socks and gloves for part of that time. Our medical team is very pleased and surprised how little neuropathy Natalie has. Her close friend went through this 2 yrs ago and never iced. She has horrible neuropathy today and is a PE teacher. She said ice ice ice. She wishes she could go back and do it. It is extremely painful for her. So we Ice until it is unbearable then a 30 sec break and back to it. I get Natalie hot tea and hot blankets during treatments. Natalie is tough as heck as all you powerful women are. We also hike around 4 miles a day to keep the blood flowing!! Prayers coming your way. Hang tough.
Jay
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Jay, what do these medical bags look like? Would a gallon size Ziplock bag be similar? Does your wife put her hands and feet in the bag directly on the ice
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mpv, I have 2 more taxols then go onto AC, surgery, and rads. I've had a lot of fatigue too probably because of the amemia that just started.
Flo80, I just found out my liver enzymes were slightly elevated this week too. I hope it doesn't get worse. I don't take medication except for ibuprofen once in a great while.
Snaffle, I do what Jay describes above for icing hands/feet. My infusion center supplies blocks of a frozen gel that are about 4 in by 6 in. They usually use one for each hand or fooy...but today I got two for each hand (for top and bottom). They put medical booties on my hands and feet and then attach the blocks using vet wrap....hopefully you can figure out what it is using google. It is sold online and I also found it at my local pharmacy. Hope this info helps.
Congrats to everyone else that has finished.
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Natalie says they are quart size specimen bags. They have an outside pouch where she slips her hands and feet in. I think would be great for you as Nat’s whole fingers and tips are on the ice. Again she does where very thin socks and gloves. She can take those off if she needs to be colder. The clinic has an ice machine but a small bag of ice to dip into is all you would need. I’ll see if I have a picture for you.
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Snaffle. I was so pleased that I had taken that picture for our 2 kids and our prayer team!! Natalie is very private but she thought this could help you. We’ll continue to pray for no neuropathy and minimal SEs for you. We would love to hear you play when you are cancer free on the other side. God bless
Jay
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Hi anyone with itching in arms aftervtaxol
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Hi Snaffle, no-one in my infusion center has ever seen anyone ice their hands and feet. So they are all very curious.. They don't have ice or bags or any supplies so I had to come up with my own. I go usually on on my own to infusions, though my husband is only 15 minutes away at home (he works from home on my infusion days) should I need him. For the first infusion he came to assist me with my ice, but after that I could do it all on my own. The nurses are also super nice and always helpful. BUt still I needed to have something practical. I had heard before, that those socks and gloves you can buy don't stay cold enough for long, so I did not bother buy them. They are not that cheap. What I use is described in the pictures below. Basically I got myself 4 nordic ice blocks (which I can get fro free from my lab) but you can order them for cheap on amazon. Then I bought two large gel packs, also rather cheap on amazon. For my feet, I place two nordic ice blocks on the floor and the comfort pad on top. This is nice as the comfort pad conforms to your toes and feet and because it is cooled from the bottom, it stays cold for the whole Taxol hour infusion. I don't ice before or after Taxol, just for the 1 h infusion. I keep my socks on my feet, you ideally don't want to expose the bare skin to the cold.
For my hands, I have the exact same setup. I place it on a pillow on my lap that my infusion center has, and cover it with a thin dish towel. Then I press my hands on and make that comfort gel conform to my hands.I occasionally turn my hands around to ice the other side. With feet you can't really do this but I do sometimes really dig my toes in that comfort gel to also get the tips of the toes exposed.
I leave feet and hands on as long as I can (maybe 30 seconds), and take them off for a few seconds and so on. It is not an exact science. I just keep them on as much as possible but not get my fingers and toes painful from being too cold.
So far I had no neurophathy in fingers and toe, I just finished Taxol10.
I'll post the pictures in the next post.
Nordic ice bricks:
https://www.amazon.com/Nordic-Ice-NOR1080-Reusable...=sr_1_3?keywords=nordic+ice&qid=1569500655&s=gateway&sr=8-3
comfort gel packs:
https://www.amazon.com/gp/product/B071L279ML/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
Oh, and you need a small carrier for the ice to keep it cold until you need it, usually between 1.5-2h until my labs are in and/or I saw the oncolgist). I had this insulated bag at home.
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These pictures are very helpful. I have a good idea now which direction I will go. Frankly the blocks and gel packs require no ice. So I think that will be easiest for me. My infusion center had not heard of icing. So they were of minimal help. I need something easy for my husband to help me with. The blocks and gel packs look simple enough.
Thanks for all the suggestions. Pictures were very helpful
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If you get that set of 6 ice blocks, you can always take 2 extra, just to keep the whole thing extra cold while you are waiting... When I go in for my blood draw, I hand my ice pack to the nurses, who will store it for me until I come back 1.5-2h later. A) you don't have to carry it around It is quite heavy), and
you don't have to keep it in a warm place. My infusion center is always pretty cold. They know the routine now. Together with my warmed blankets and my pillow they bring my ice pack right to my chair when I get called in. Just to make sure: these comfort gel packs of course have to be frozen too, at least over night. I just keep the whole bag in the freezer for 3 days before I need it. I have a big chest freezer in the basement.
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