Weekly Taxol group
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Danielle-Positive vibes that you can proceed ahead with #2
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I finished my 12th Taxol treatment May 2. I am still very tired most of the time. I am ready to start radiation now. I went for simulation last week. I have another appointment tomorrow. That was not fun! I have osteoarthritis in my joints including in my neck and putting my arm over my head at the angle they want is hard.
I have been reading here but not posting. My computer has not been very cooperative.lol
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I just finished Taxol # 12 today! I wanted to show my hair growth so far. It is still very sparse on top, but a good amount on the sides. Ive been very tempted to shave it all off, but my nurse said I should just leave it alone. Can't wait for the growth to start!! Even if it's not for a little while : )
Just a side note: I have no eyelashes or eyebrows left. These are just drawn on.
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You look great, Veronica! At what point did your eyebrows and lashes fall out? My eyebrows have thinned, but so far I still have some of both. I still have 7 taxol left to go.
:-P
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Veronica, you are really beautiful and look so cool!
I am only on Taxol not AC and also using cold caps (no one knows if it will work) but I see you not the only person who says her hair start to grow on Taxol but I was told they fall . So, what is the story with Taxol? Just wondering what should I expect. My nurse said week 6 when they fall....
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Veronica, what do you use for your eyebrows? They look great! I'm on AC dose dense and shaved my head. Still have eyebrows and eyelashes right now, but I'm assuming they will be gone soon. I'm looking for tips on eyebrows.
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QAj2013, I was recommended by my cold cap company to use attached. Use it twice a day on eyebrows and top lashes only. Just Google their website. I don't know if it works or not yet too early to tell. But I believe you were supposed to start with the first chemo...I am not sure if it will work in your case. Try it!
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LoveMyVizsla: Thanks! For me, it started falling out probably about halfway through, but maybe a little bit before. Everyone is different. All of mine fell out, but I've seen others who did not lose all their eyelashes and brows. Good luck!
viktoryaK: Thanks : ) I think it is just that every reacts differently. While my hair started to come in, it is only some of it. The hair on the crown of my head did not come back in all the way throughout Taxol. I'm figuring it will be a few weeks before the rest of it starts coming back in. I would assume that your hair will thin out, but hopefully the cold caps help you keep more!
OAJ2013: I use some dark blackish brown eyeshadow first where my eyebrows were (but very lightly). Then I use It Cosmetics Brow Power to draw little eyebrow-like hairs over the powder. I used to just use the Brow Power pencil when I had some eyebrows, but now that I don't, it makes my eyebrows look a little reddish if I use it alone.
As for the eyeliner, which I know you didn't ask, I use MAKE UP FOR EVER Aqua Liner Liquid Eyeliner 12 Mat Mocha. I bought it because I'm going to Miami and I do not want to be seen with totally naked eyes and this is waterproof and long lasting. I was finding that regular eyeliner was smudging after a few hours.
Good luck to you all : )
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Thank you ladies
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Just finished Taxol #4. On the way home in icold caps...2 more hrs to go with caps on:((
as I promised here icing pictures..
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How long does the taxol infusion take? Do you have to wear the ice on hands and feet after you're done or just during
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Congrats Veronica!!!! Radiation next or done?......you look great. My hair is coming in similar to yours and I am at #12 this week also. Brows and eyelashes came out during Taxol.
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QAJ, They give me right before chemo starts (but i read it has to be 15 min before) I guess you can start during premed. And i hold 15 min after chemo done. Sometimes they just remove but today i had Herceptin to and was holding15 min after Taxol. I don't know it if works. So far ok.Will keep you posted.
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My weekly taxol infusion takes one hour, plus the zofran beforehand.
Thanks for the info Veronica.
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or yes. Sorry forgot to reply on your question. Taxol 1hr.premeds 45 min before. I start cold caps an hr before chemo. 15 min before Premeds. appointments never on time. Like today I asked receptionist when I Will be called. But was told not yet/but it's not , put your cap on. We did and then it was extra 40 min wait:(
Premeds totally make me sleepy and out of understanding what happens.
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Thanks DFWFLYGIRL! I couldn't have been more excited! I brought in some Georgetown cupcakes for the staff as a thank you. If you haven't had those cupcakes, you should. They're amazing.
I will start 6 weeks radiation in a month (I wish I could start sooner and get it over with). And then 10 years Tamoxifen. Breast cancer is just the gift that keeps giving, right?
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Veronica.....yes the gift that keeps on giving. Glad you had some celebration fun!! My MO said I have a two week break and then radiation will start. Did they tell you to take out your port prior? Hope you have some fun long weekend plans to celebrate this milestone:))))
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I just finished my first Taxol. Was wondering why you needed the ice.
Thank you helping me understand
Ja
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JanS1234567890
I was told by my MO that clinical studies showed it helps to save nails from damaging.
I am at Sloan Cancer Center in NY.
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New question for anyone? Does your oncologist ask if you have fallen each time you go for a visit? I'm just wondering why they ask this. Does taxol make you off balance at times? Is this something that I need to be concerned about?
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mvr ;
I think it's due to neuropathy of feet making you fall. Mine asks me if I have numbness in feet or hands and then asks if I've fallen or have trouble buttoning clothes ( hands) . The nurses have asked in a similar way so I think it's to assess if your ability to function or the amount of neuropathy
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DFWFLYGIRL: Yes!! I'm going to Miami to celebrate for a few days at the beach before radiation. I'm sure I'll be the only balding lady on the beach, still equipped with a beautifully protruding port. But, the week after I come back I'll get the port out. I wanted to start radiation right away, but the radiation oncologist wouldn't start until a month after I'm done so I can recover. Mind you, I've never had bad blood levels!
Happy last week!! Hope you're celebrating too : )
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Veronica- Have a fun and relaxing time in Miami. You will rock the "new hair/balding"look on the beach....so chic:)) I just finished today and very excited but a bit tired. Staying in town but will definately pamper and celebrate. Awesome we are moving to next chapter:))
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Well, I missed my 6th taxol today because I came down with hives yesterday. Doc is sending me to my dermatologist tomorrow. I just want to scratch my skin off. Ugh
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Hi guys I have lurked for a while but never posted on this topic, but let me say you all have been a wealth of knowledge and inspiration!!!!
I finished my last (12) Taxol yesterday! 🎉🎉 though extremely happy, what was very odd was that I was very emotional but I think it was the fear of what's next? I will be having RADS but the weekly chemo visits etc. we're kinda like a safety net. Now I feel weird about only seeing my MO every 3 months. But I guess that's normal we have spent the last few months living at the doctors officeor the hospital , that now unfortunately it has become our new normal! Strange how that happens.
Congrats to all who have finished and will be finishing soon! This is truly an accomplishment!
Allie
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I have been watching the posts for a long time and have not posted in a long time. I finished 12 weeks of Taxol on March 14 and finished 5 1/2 weeks of rads on Apr 19. The rads went by very fast and I had little trouble with that at all.. some red skin and blisters and some fatigue. But the burn is not at all like a sunburn; it's red skin, but doesn't hurt when you touch it. At least it didn't for me. Nothing compared to chemo.
I had a really hard time with Taxol. Extreme fatigue, nose bleeds, no taste, no appetite, eyebrows and eyelashes fell out, really bad gastro symptoms, the neuropathy hit about week 8. It got to the point that my MO wrote me out of work every Thursday and Friday (got Taxol on Tuesday) because I could not function Thursday through Sunday. Since I have been off Taxol the nose bleeds stopped, my eyebrows and lashes came back quickly, my hair on legs, arms, lady parts and head is all coming back. The worst thing was the gastro symptoms. They got worse, chronic diarrhea, stool incontinence, colon spasms, night fevers. We checked for c. diff, tried different antibiotics and I got sicker and sicker. MO finally did a CT scan and they found diverticulitis, so back on more antibiotics. After that I felt better but still had the chronic diarrhea and incontinence so MO sent me to GI doc. Turns out I have Ulcerative Colitis. No one will say it was caused by the Taxol, but Taxol is very hard on the gastro system. I just started on meds today and should be feeling really soon. But I have been through several months of being really sick. If you are having severe gastro symptoms on Taxol, I would highly recommend seeing a GI guy.
I'm still having pretty bad neuropathy in my fingers and feet. Very annoying and limiting. We are going to give it 6 months to see if it gets better then my MO said we could look at some medications. But they have side effects and I am so tired of medicine and side effects. I'm hoping it gets better.
I did not have a good experience with Taxol, but I got through all 12 treatments. We did cut the dose on the last two. But I did it. And I did the radiation. And you can, too. Hang in there! It will get better when you finish and you will start to feel better. When you finally get to the end of the bad stuff, you will feel better and you will be proud of yourself for what you have managed to do. This stuff is not for sissies!
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ncsue927-
Thank you for the detailed post about your Taxol experience. I, too, seem to have a harder time than many on this drug and it is good to know I am not alone! I have GI effects, too, but have had lifelong GI issues and we are trying to manage these. They are not as bad as yours, but I am glad you are finally improving a little. I am sorry you have ulcerative colitis. I have family members with that and understand how bad it can be. Check out and talk to your doctor about the Specific Carbohydrate diet; it may help you. Sometimes, before my family member got medications which worked for her, she could eat very little at all without having serious issues. There is also a product by Metagenics called GI Sustain, which is a complete food when you can't tolerate or digest anything else. It is basically rice protein and carbs and balanced vitamins, etc. My understanding is that UC is an autoimmune disease. Any autoimmune condition can lurk and be triggered into existence or an active flare by body stress--and chemotherapy definitely is that (and sometimes emotional stress, because that can affect the body.) Who knows?
Anyone-Question re: Red, Hot itching/burning heels: Any thoughts?
I have been using cold packs on my fingers and front part of foot/toes, but not my heels. Think I will begin with icing under the heels too.
My Taxol/Herceptin #5 was on Friday. Saturday night my heels on the bottom of my feet began itching horribly. I usually go barefoot on our hardwood floors (a few area carpets) here in California in late spring and summer. We have 2 dogs. They only walk on sidewalks and in our garden which doesn't have any apparent poison oak etc. At first, I thought maybe they tracked something in the house that irritated my skin. But given that the front of my feet aren't affected at all, and the redness (they are usually smooth and white to pale pink) I see, I think it is from Taxol. Also, they do seem a bit sore. Is this neuropathy? A reaction to the chemo?
I will report to my MO, who I happen to see for a check up on Thursday. In previous weeks,I have gotten the redness , itching, and a knuckle hand rash, beginning to climb up the arms, after each chemo. This round, at the first sign of that, I took oral Benadryl (they give me infusions of it with my chemo), and I kept it up until 48 hrs after chemo, and the hand /arm rash never came. So the heels puzzle me...maybe just neuropathy.
LovemyVizla:
I am sorry you had to miss your chemo. Did you start with milder rashes and progress to the full hives? I am wondering due to my rashes and heels.... Also, I would love my Vizla if I had one!
And today, I am thankful for this group. And that I managed to take a lovely hike, despite bothersome feet and fatigue; I was grateful the GI symptoms were not here today! And had a lovely grilled dinner with my husband and son (while they watched sports, I just enjoyed eating today!) Inching toward the halfway mark ...day by day.
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ncsue927, thank you for your post! Taxol is a gift that just keeps on giving, isn't it? For me too it's been really hard, much more than AC. I'm almost 3 weeks post final Taxol but still haven't recovered. After the last one, I came to the decision that if I have a recurrence, Taxol will not be part of my treatment. It's killing me faster than the cancer. I've had most of the side effects you mention and also excruciating pain everywhere (bones, joints, muscles). It was 10 days after the last one until I could properly walk. Thanks also for recommending seeing a GI doctor. I hadn't thought of that but it may well be posed because I'm getting tired of the constant bleeding and pain. I'm still hoping it will get better after my skin recovers from Taxol, because I seem to bleed everywhere there is friction, including the holes for my earrings, gums, nose, etc. I'm headed for surgery now but if I'm not better by the time I recover from that it's good to know I can do something about it.
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Maya15: Not exactly a Taxol post but Good luck with your surgery! I had mine first, because originally we thought I didn't need any chemo (but turned out I did after a different test showed HER2+). Though surgery is big, and I don't think it was fun at all, I think it is overall easier than chemo...because there is steady progress, you can get good drugs to take care of all pain. Just force yourself to rest, sleep, lie in bed, read, and watch TV...and do not lift anything heavy at all , not even a gallon of milk, until the 6 week mark. When you are ready to go out and do things like shop, if you must carry them , get bag packed super light. Or better yet, get groceries delivered! I'll be thinking of you. Check out the surgery preparation thread here: I have a list of things I found essential for a smooth recovery . I had a double, but for you, I think you might want this too: a neck travel pillow. You will be able to sleep on one side, but may get tired of that. Propping up and using a travel pillow saved my life! Also, camisole with drain pockets inside to wear while you have drains just makes life easy. You can order on Amazon, there are several types.
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Just finished #7 Taxol on Friday and the neuropathy is worse this week. I have had a smidge here and there and the week before didn't notice anything. Guess this one made up for it! I got a script for neurontin from the PA at my chemo doc today but I am going to try glutamine powder first. HOW exactly do you we figure out how much to take each day? And how often? My medical onc doesn't care if I take it but he doesn't include it as part of his med list (just B6, B12).
The PA says its up to me what I want to take/use. Figured I would try the more natural supplement first since its hard enough to know what side effects I am treating as it is! Damn steroids and vision, obsessive hunger and of course the normal IBS flip flopping and extra meds to fix that every week. The daily nose blood clots...and today I wiped my nose and its usually just clear but this afternoon YAY bloody nose! Glad it didn't get on my clothes.
Probably ran too many errands today==holidays mess up my weekly "schedule" and pace of activities. Kids still in school til 17th and then I have 2 more chemo treatments but they will be in camp so it will help. They have 3-4 weeks of science camps and then my daughter has decided she wants to learn to play basketball so we have bball camp! Gotta keep the pale redheads INSIDE you know.
HAVE I mentioned how much I love the HOT FLASHES?????
In the past few days my hair is really growing back in! And its not the blond stuff---its my darker mousy brown hair. My armpits have a lot blond hair now too. My skin is irritated so I am not shaving it yet. Its been gone since mid/end of March. Eyebrows super thinned and eyelashes are sparse but a few holdouts remain. LOL
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