Weekly Taxol for Stage 4
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lulubee
I hope this story makes you smile. I have a puppy (she's almost a yr now) who loves to lick my hair. I have some hair but now spotty so I put on a wig. Zoe (puppy) came & stood by the sofa & just stared at my head. I mean stared. Then she got on the sofa & smelled my head all over. More staring. Definite thumbs down vote. She's not happy about scarves either but not as negative as with wig. If all my hair all falls out I think I will have to cut a section & tie it together for her to lick. Maybe you could keep a small hank for your gdaughter to hold till your hair comes back. Life is so funny. April
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Lulubee, your little granddaughter sounds so sweet, and you two are so special to each other! Oh man, there must be a way to do this. Can you visit a good wig shop (try a retirement community) and get input from the stylist? Definitely match it to your own hair right now. Maybe find or start a wig thread. There are many stories here on BCO from people who fooled everybody with wigs. Also, from the child psychology angle, maybe dolls with wigs whose hair will come back, and some fun styling the wigs together, if you decide to reveal the hair loss at some point. Losing Mimi's hair sort of sounds like losing a special blankie. More important, but also maybe more bearable, because she will still be able to sit in your lap. Kids come up with ways of coping, too. Once when mine was a toddler with a cold and too stuffy to nurse (for comfort), I was asked to nurse a doll instead. Vicarious nursing.
Sharethehope, that's a cute story about your puppy.
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Just started my third go round of Taxol. Other than losing my hair and some poop issues handling this treatment well.
Going for a new wig today. My old one hurts!!!! And best part is thAt my boss is paying for it!!!
Babs
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I just had number 11 and my skin all over is really sore. Feels like a bad sunburn. Anyone else get this? It usually starts day two after chemo and lasts a few days. It just seems like it's getting worse. I am still doing three weeks on and one off but MO had mentioned maybe two on and two off which sounds good to me. What regimen are most of you on? I know Taxol is working as I have had a naphostomy tube for six months and it's been 24 hours now with it capped off and still peeing on my own. If I don't have any issues over a week they will take the tube out. The cancer was crushing my urerter so Taxol either shrunk or killed the little bastards 😎.
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Good to hear taxol seems to be working Dianarose, I haven't had the skin complaints you have but wonder if it could be the steroids.
Babs good to hear Taxol is going well for you too.
I have had a 6 week chemo break just because I always do this time of year and have so enjoyed no treatment. I start up again on the Oraxol tablets tomorrow hoping for another good run on it.
Hope everyone continues to do well.
Shazz
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Shetland, you were sweet to PM me when I did not respond here in the thread. Thanks for checking in on me. It's been a rough first week home from the hospital drama. I'm still on oxygen and very weak. Today is steroid crash day from my second infusion, so yuck yuck yuck. At least I managed to get a shower today. Woo hoo!
So the answer to your question is yes, I got a wig. My adult daughters took me to a shop while I still had some steroids in my system from the first infusion, about a week ago. I haven't noticed any remarkable hair loss yet, just maybe more single strands escaping here and there so far, but at least I feel a little more prepared. The wig is pretty similar to my current hairdo, although nowhere near as thick because I have a ridiculous amount of hair. At least right now.
Taxol seems to be holding back the pericardial effusion from proliferating again, so far-- my echocardiogram this week was better than anyone expected, with no re-accumulation. So yay for that.
Hope all are having a peaceful and restful weekend. It's good to see a flurry of activity on this thread.
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Lulubee. I wish I had gone for my new wig while I still had my hair. Since I hated my old wig it's not a great source of color etc. I waited too long. But the new one will at least fit much better. I will not buy anything that's not comfortable this time!!! I'll need to wear this wig at m'y daughter s wedding!!!!
Bab
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Hello ladies, do you mind if I join in this group? I am on Abraxane due to being highly allergic to Taxol and taxotere. I just finished my first round, I'm doing 2 weeks on and 1 week off. I will start the second round on Tuesday. It has went well so far. This week I lost quite a bit of hair, I was hoping not to lose it all. I am very sad that I already had to start chemo, I progressed unbelievably quick, going from NED to multiple mets in just a few month. Don't know why that stupid cancer did that. Wishing everyone the very best.
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Yes, join us, Kandy. The regimens are so similar, we might as well all support one another. I understand the shock of going from NED to a great big mess, because that's where I am right now, too. But I've been on these boards for a decade and I've seen a whole lot of frightening situations ramp up and then calm down and get stable again for a good while, so we do know it's possible. Let's just all hold hands and run toward hope.
Well-- run, as in metaphorically. LOL. Right now I can't even run to the bathroom without getting totally out of breath! But I believe in baby steps, and I believe we will see better days around here.
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Welcome Kandy. Great that you can join us here, same drug different carrier. I'm on oral taxol so same drug no carrier I haven't been able to find others taking it as it's still in trial so I continue to hangout here.
I've been doing weekly Taxol in one form or another since September 2013. I had widespread mets which it did a number on and has continued to keep me stable all this time. I'm taxol biggest fan. I hope you get the same great results I have.
Shazz
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Shaza, that is awesome you have done so well on Taxol. I do pray that it helps me. It's hard not to let my mind go into the dark place. I'm a new grandma, called Mimi. Harper is my first grandchild and I'm praying for time with him. It breaks my heart to think he may not remember me. I'm hoping it's the miracle drug for all of us here. What side effects are you ladies having? Any tips would be appreciated. They said my hair may thin instead of losing it all. What was your experience? Best wishes.
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Shazza, I am very interested in your experience with oral vs IV Taxol. You give me hope that I might go back to oral meds again. Keep posting, please-- we Taxol newbies need your story.
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Hi all,
I've been reading the post and found lots of information on Taxol. I've been Taxol since last April, 2016, every week until Dec 2016 when my scans showed that my liver mets have all disappeared except for 4 which my oncologist said that they aren't very large - no more 5mm. He switched me to 3 weeks and 1 week off. I really enjoyed my chemo vacation week. On Taxol, I lost my hair. It was hard to accept but in time, I got use to it. It's some of the other side effects that concern me. Neuropathy in both my feet and hands, and my nails. My finger nails are worst than the toenails. They turned black and blue and broke off. I'm hoping that my next set of scans show that the liver mets are gone. My bone mets are stable, In fact, my oncologist said that the bones are actually stronger - guess the Xgeva and calcium supplements are doing their thing. Each is a good day even though some days may be a struggle.
Shazza, found your story very inspiring.
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Ladies,
I have been doing weekly taxol since July. My ca27.29 got as low as 69. Now just a few short months later they are 144. I assume I am having progression and the taxol has quit working. Has anyone experienced this? I am so scared. I am supposed to get a pet scan in a few weeks. My liver panel is normal. My white blood counts are a bit high and my red counts low. I am exhausted. I have no pain from my bone mets. I feel like I am going to lose my mind.
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Lisajo6, I'm so sorry you are having this scare. I just started Abraxane so I'm not much help with experience. But hopefully someone will be along shortly that can help you out. I'm praying progression is not happening for you. I wish you only the best.
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lisajo6 sorry I'm no help with tumour markers. They don't work for me so we stopped taking them about a year ago. I do believe though that things other than cancer can affect them so I'm keeping my fingers crossed for you.
Kandy I lost most of my hair when I started taxol but then the hair on my head started growing back again almost immediately. My body hair didn't start coming in till I started on the oral version last year so I didn't have to shave my legs for the longest time. My eyebrows fell out about a year into it and again didn't come back till I started the oral. My eyelashes came and went. There seemed to be no rhyme or reason to it.
Nail problems are pretty standard with paclitaxel and it's a good idea to keep them painted with a dark polish as taxol is sun sensitive. This stops the nails discolouring and lifting. I've managed to keep all my finger nails but as I don't look after my toes in quite the same way they ain't so pretty.
I did find that over time my body got used to the taxol and any initial side effects improved with time.
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Lisajo6, I had a similar problem with the CA27/29. The count was steadily decreasing and then from Sep 16 to Dec 16 it went only 4 points. My oncologist thought the Taxol had stopped working, The next day, the results of my scans came in and showed my most of my liver mets were gone. Sending good thoughts that your scans come back good.
Shazza - thanks for the info about using a dark color nail polish. I did notice that my fingernails haven't got any worse since applying the polish. I'm like you - I, too, haven't made much attention to my toenails but when I thought about it, I never really paid attention to the toe nails - cut them and leave them in the natural state. Now, they are really ugly. I'm waiting for the side effects to level off.
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Hi All,
I am not sure how much difference it makes taking Taxol weekly versus every three weeks (which I am on) but how long until your hair starts to fall out? I was being thrifty and refused to get my hair cut since I was going to lose it anyway LOL. Now it's making me crazy!
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Sadiesserva, my oncologist decided to put be on weekly Taxol instead on every 3 weeks as he thought it would be easier for me. I was told that my hair would begin to fall out about the 3rd week. For me it was week 4. At my hairdresser's advice, I left my hair alone until it started to bother me, then had it cut short and Taxol did the rest. I understand that some do not lose all their hair and for others it begins to grown back after a certain period of time. I'm not one of the lucky ones, my hair is very slowly growing back.
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Thanks Highhopes,
This is helpful. I think it will fall out a bit sooner on the three week cycle as it a higher dose. I already have fairly short hair which is why it drives me crazy when it gets too long and shaggy. I lost my hair on CEF in 2001. The upside of chemo was that when it grew back I realized I preferred my hair short. I would have never had the guts to go short but it makes me look much younger and is so much easier to look after! Of course, thee is short and then there is really short!
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for those who finished Taxol when did you really see hair coming in
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I'm so glad I finally found this thread! Actually the moderators found it for me. Now I'm too exhausted to write! Basically in 2014 I was diagnosed her2+, did neoadjuvent chemo, bmx, reconstruction, etc... when I had my bmx, they removed 3 nodes that were clear, clear margins so I did Herceptin for a year and went away happy.
Fast forward, I'll share more tomorrow, I had ct and petscan last week and Friday found out I'm mets to liver, both lungs, both kidneys, one adrenal gland a few bones. I got my port in today and had a liver biopsy. Tomorrow I start dose dense taxol every week then herceptin and perjeta with it every 3 weeks. I've heard side effects are way less ( I was on taxotere, carboplatin, herceptin and perjeta before.
Any helpful advice you can share with me? I'll read this whole thread once I start my infusion. Also my pa told me I might not lose my hair, is this true? I just got used to it again!!!
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Hi Pinkninja,
I am not on the exact same treatment as I have Taxol every three weeks. I understood this was a higher dose - my MO indicated that if I had issues with neuropathy we could go down to weekly - but I could be wrong. I am now losing my hair at just over two weeks from my first infusion. In reading other threads on the weekly treatment it seems it might take a bit longer to lose your hair on the weekly dose.
Sorry, I can't be more help
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thanks Sadie, but we do lose it all right? I'veread it starts growing back really fast though!
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It was exactly three months after my final weekly taxol infusion that I ventured out sans scarf. My hair was uber short, but I no longer looked bald.
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Well, I can't be sure as I am just starting this regimen. I noticed someone else indicated that on weekly Taxol there is quite a bit of variation in when and if you lose your hair. The dose I am on was pretty much a given about the hair loss. Very few manage to keep it. And I am definitely not one of them! It's making me insane with hair dropping. I also wasn't sure of the timing and the darn stuff starting really falling on Sunday and today is a holiday in my province. Tomorrow it is getting buzzed off!
I was on a pretty aggressive chemo my first go around (CEF) and my hair started to come back before the final treatment. I think Taxol is pretty similar.
Pat
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well I had my first taxol Tuesday along with Herceptin, Perjeta and Zometa and had a horrible migraine yesterday. I was pretty much in bed all day, I couldn't eat and threw up a few times. But praise the Lord cause I woke up feeling so much better today. I'm a little fatigued and the bone pain's bugging me but I'm grateful for good pain meds. I'm gonna order some cold mittens and socks for the neuropathy and I'm gonna paint my fingernails. when I went thru chemo last time, I used L Glutamine powder and that also seemed to help.
any other suggestions?
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Pink, my nurse told me to drink a lot of water after the Taxol infusion to flush it out. She said it does its job right away, and after that keeping it around just increases side effects. Also, are they giving you an anti-nausea in your iv? How about an anit-nausea pill like Zofran near the end of the infusion? A pill will have a longer-lasting effect than iv anti-nausea meds. I did both and had no nausea.
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I too was told to drink a lot of water after each treatment. I've not had any SEs other than hair loss. I do ice my hands and feet during treatment so my nails stay as they are and it's working!
Bab
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I think it was my bad that I threw up and had such bad nausea. I drank a cup of coffee on an empty stomach, mistake #1 then I ate a piece of toast, drank alot of gatorade then brushed my teeth which made me gag and well you know the rest. I haven't been nauseous anymore, just tired.
Gladto hear about drinking water to flush the chemo out. the first day I definitely didn't drink enough but now I'm chugging it
overall, feeling much better. my first chemo regimen TCHP almost killed me so I'm grateful the side effects are a little easier.
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