Weekly Taxol group
Comments
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Clarrn, What a horrendous time of it you have had. I wish we could have helped, but I guess all innocent bystanders feel that way. I hope they treat you well while you are in the hospital, and that you can get home right when it feels right to you.
Jen, that was a great picture! Its fun to see the folks we are talking with. You have a really game attitude, as well. Here's to regrowth of hair in a timely fashion!
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SyrMom, you are awe inspiring! 32 infusions of just Taxol, alone! You are a trooper for sure! I hope the side effects stay minimal for you!
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Jhodro, Pop the bubbly woman and celebrate!! Woohoo! What a great feeling! Last week was my last one and when I awoke yesterday, it seemed so weird to not go in and chat with the infusion ladies and get my weekly dose of poison. I got so use to it that it was weird to not go! LOL When I have my nightly glass of wine tonight, I will toast to you! And you stage 4 ladies, SyrMom, MameMe, Brigadoon, etc, every night when I have my glass of wine, I think of you strong ladies and how you are fighting every day. So I toast to all of you every night and marvel at your perseverance!
And as to the red cheeks, mine are ALWAYS red. It never goes away. I am a week out from my last chemo and I still have red cheeks. Oh dear God, do they get worse when I have a hot flash and apparently I now blush too. LOL
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Thanks everyone. The vent and tears were cleansing.
Today I feel much more cheerful. Lots of good friends working today so lots of laughs. And they brought me fresh fruit 0 -
woohoo jhodro
Happy dance with my IV twirling around me. 0 -
and here comes my steroid crash.... I hate this part of the week. I just hibernate and often cry.... SUCKS!
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Seems this Taxol has it's demons as well. Nothing can be as bad as A/C and the nausea that I had to bear for almost 5 days. Right????
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jen- big hugs... wish we were all closer and could have a big cry fest together. My husband brought me the movie PS I Love You to watch tonight. That way the nurses won't know if I am crying from the movie or just because of life. Actually they will know, but I won't have to talk about it
Want to come watch with me. I even have popcorn!
No luck in getting out of this place early. Friday at the earliest and chemo on hold.
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Clarrn, watch Austenland instead. It will have you laughing in no time. Jennifer Coolidge steals the show!
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oh the steroids. And to think i have a busy day at work later.
Clarrn hope you enjoyed the movie!!
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Clarrn I think at this point you need a big dose of bear (((hugs)))) instead of gentle hugs. Hope Friday brings you good news.
Yes, to the steroids. If only I had the gumption to do work stuff and get caught up on email, etc, but that never seems to be the case. Well, I shouldn't have an excuse to miss my 7 am conf call since I have been up for hours! Jen,my crash should come about 3 pm this afternoon.
Neuropathy in toes, fingers and what the doc is calling peri-oral. My weird tongue sensations and desensitized lower face are neuropathy. It's uncommon on the face but more doctors are recognizing it now. MO suggested glutamine which I believe some of you have mentioned. I ordered some online last night. Obviously I will continue icing.
Only advise on nail lifting (wish I could remember the very strange technical term they called it) was NOT to remove the shellac polish I have on but to put regular polish over it to keep nails strong and let the shellaced nails grow out. It was recommended that I discontinue the shellac because it is possible that the removal process of the shellac at salons is too harsh on the nails and may contribute to nail thinning. And, here I thought I was helping my nails stay strong! For the nail that has lifted and split horizontally about 3/4 down the nail bed was to keep it from lifting further and breaking off was to tape it or use super glue until it grows out. If it breaks off it will be very sore. Also nails should be kept as short as possible and no longer than the finger tip.
4 down and hanging strong!
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I'm reading all this and not sure what I will experience. These are the orders I've been given.
- No dark nail polish, it will encourage fungus because of the lack of sunlight
- Take 5 Dexamethasone 4mg ea at midnight the night before treatment and again at 6am the morning of treatment
- Mix Glutamine powder with juice or water three times a day for the first five days of treatment
Will I be wide awake the night before treatment and then crash that afternoon? My nails already are slightly dark at the bottom of my nail beds, the nurse said it would get worse. How dark did your nails get? Should I use something clear on my nails? I have Sally Hansen stuff in the blue bottle that I have been using for about 6 mos to a year as a top coat.
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HomeMom,
I didn't get a differentiation on nail polish color. If the color is opaque regardless of color I don't see what the difference is but I am certainly no expert. I will be looking for a polish with hardener, I think, to help with the thinning. I was thinking Sally Hansen.
I don't take any oral dexamethasone with taxol like I did with AC. I only get it in the IV so the night of treatment is my awake night. I should sleep better today, especially, if I can make myself stay awake today. However, I usually crash by late afternoon, mentally, if not physically. Everyone is different so you might have a different reaction.
Good luck with your treatment this week!
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HomeMom, I was told opposite about dark nail polish; told the dark helps protect against the light; light makes the taxol destroy the nails faster. I've kept dark polish on for nearly a year now, along with a base hardener. I rarely sit out in the sun because of the skin sensitivity it causes, but when I do for short periods, make sure my toe & finger nails are covered. I also ice during infusions. So far not lifting, but I figure eventually it has to happen since I've been on this chemo since September of last year.
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Well colored me totally confused now! I had on a dark nail polish which I put on just after my 3rd A/C infusion. I took it off two weeks later and saw that the bottom of both thumbs nail bed has darkened and the rest are slightly dark down around the cuticle. I still have the same color on my toes Oy Vay
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I used nail polish throughout Taxol and didn't have any problems. I do notice when I change the polish my nails have lines across them dark/light/dark/light. But they have stayed healthy. I also used the gel for my hands and was careful not to peel it off as that seemed to make them really much thinner than if I had done that in the past. (I think that's probably bad anyway). At points in time they didn't grow fast, but they stayed put. Good luck ladies figuring out what works best for you.
I too was able to go through 11 Taxol (the first one I had the Dec before and after treatment) with only the Dec infused right before treatment. That was PLENTY.
The steroids are not my friend.Last night I ended up sleeping after 2 mg ativan for 2 hours. So my crash will also be at 3pm. Kind of too late to nap (plus I'll still be in meetings). So I'll be struggling through the afternoon. Relieved to know that I won't need steroids for the H only days. I have one of those next week, then go to the every three weeks regimen. So I can say bye-bye to that mean drug. Hopefully forever.
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Mmtagirl, I had neauropathy of the whole face! I still have it from time to time since I just got done with my last chemo. It is SO bizarre! My whole face feels that way as well as my mouth and teeth!!
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With the A/C I really couldn't function out of the house for five solid days. Will I have down time with this, with the exception of apparently falling asleep sometime in the afternoon?
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I think that's the biggest thing with taxol is the fatigue, at least for me. Other stuff was going on too - but it was never enough to keep me in bed. Just always felt extremely tired as time went on. Good luck!!!!
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As long as I don't have that nausea thing again, I can handle it!
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Another question...has everyone had Taxol on a weekly basis? I am going every two weeks for four treatments. I wonder if I will have more severe SE's that way. ugh.
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HomeMom, I had the DD Taxol (4 with 1 every 2 weeks) and had very few SE's, so it really depends on the person. I just had some muscles achiness on day 3 that only lasted for about 24 hours, and little numbness in fingers and toes for the most part. I do know people that had much worse symptoms on DD, but also others with both mild and severe symptoms on weekly. So you just never know how you will react. So, I'm just saying, DD doesn't necessarily have more severe symptoms. You do have to continue taking the Neulasta shot with DD, so if that bothers you it will still be the same.
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Macintx - thank you! I had run of the mill type of SE's with A/C. I was mildly nauseous but the pills kept it at bay. I was a little achey and just felt like I might be coming down with something. The nausea would go away after the second day and be replaced with weird taste in my mouth and fatigue. I had almost no SE's with nuelasta and will still have that with Taxol
If I can function better with this I will be thrilled.
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HomeMom, hopefully you will! It seems overall, that most people do do better on Taxol.
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That is what I heard and am clinging to!
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hi home mom- there was no comparison between AC and taxol- for me it has been MUCH More tolerable. I take Claritin the night before and 3 days post infusion for joint pain/aches. Alleve as needed. Fatigue present but tolerable. Good luck to you!
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Thanks guys. I have to take 5 steroid pills at midnight the night before and 5 more at 6am. I usually take Claritin the day after for my Nuelasta shot. I don't have much achyness doing that. I also have glutamine to drink with juice etc 3x a day for five days. Hope this helps with the darkness that has shown up at the bottom of my finger nails.
4 treatments - and I'm done.
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Last Chemo Day! YAY!!!!!! Poster made by my oldest grandchild, 13 yr old Lindsay, such a sweetheart.
Can't believe this part of it is over - five long months. Onward to 7 weeks of rads in a few weeks!!
Homemom, I did the 12 weeks of Taxol, and found it much easier fatigue wise than AC. Although you do get somewhat more fatigued toward the end and I lost my tastebuds as as I did with AC. So back to the Difuclan & Magic Mouth Wash precriptions for a bit (I was on them for AC more frequently). I was on the treadmill for 45 minutes this morning before chemo, so I'm not that fatigued.
No neuropathy or further loss of nails on Taxol (I lost both big toe nails on the AC which is unusual), but I did ice with two sets of Elastogel gloves & booties. You can still get it though months post chemo, so who knows. But I feel like it's definitely helped me so far. My MO is doing a clinical trial on it soon.
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Last day of chemo!! My olderst grandchild made the poster. Lindsay is 13 and such a sweetheart. Can't believe this part of it is over - five long months. Onward to 7 weeks of rads in a few weeks!!
Mscaruso, I hated the port for the first 2 months or so because it hurt when I slept at night if I turned the wrong way. I'm told this sometimes happens to small women and the tighness of space. That said, I don't know what I would have done without it for all those infusions. It's really a blessing, although I'm looking forward to having it removed:-).
Homemom, yes, Taxol lots more tolerable than AC. BTW, I lost both big toenails on AC, which is unusual. So far, no neuropathy, and only my thumbs look indented, but not lifted, so they may turn out OK. I did ice using two sets of the Elastogel gloves & booties and feel that has helped. Although neuropathy can rear its ugly head months post chemo, so who knows. My MO is a big believer in icing for Taxol and is starting a clinical trial on it soon.
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Congrats to you MomMom!!! A/C made me queasy and very tired. I also would get a slight head ache. I guess I will see what I get with this one tomorrow. If I can rebound by the first of the week and have no queasiness, I'll be happy. I hate the unknown.
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