Weekly Taxol group
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I didn't take my Ativan last night and I woke up at 3 am couldn't go back to sleep. All I can think about is I have an early PT appointment
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I should probably know this, but stress has me a mess right now. Does each week on taxol get a little harder as far as SEs? I'm managing so far, but tomorrow is week 3 and I want to be prepared if the SEs are cumulative, thus will be getting worse.
My MO said I could stop at 10 weeks so I'll be done by Thanksgiving. She said if 10 weeks doesn't kill it, 12 weeks won't either. I don't think she meant to be so blunt since she's actually very nice. Still, I wish she had worded it more positively...
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brightness- I only have 2 taxol so far so I don't know yet, but I do think they will add up each time. How funny your MO put it but I can see the truth in there too
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JenRuns, yeah!!! I really think that sleep has a HUGE effect on helping our body process the chemo. So glad you slept well!
Paulette, sorry you woke up so early! My MO assured me that it was perfectly safe and "acceptable use" to take an Ativan two nights a week to ensure you sleep while steroids are still in your system.
Brightness, I completed my 12 weekly taxols this summer. I found that the SEs were only slightly cumulative. As the treatments continued, it seemed that I had fatigue for a little longer every few weeks. My GI system also rebelled a bit towards the end. At the same time, I became more of a pro with dealing with the symptoms and understanding how my body reacted, so in a way, the SEs were more manageable as I went along. Hang in there!
Hugs from Colorado!
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T-Sue, thank you for responding. My anxiety and fear is growing as I face treatment 3 tomorrow, so your words help. I don't think I'm as brave or strong as many of the people here.
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Brightness- so do I, today I was dealing the swelling on my upper arm. The PT wrapped me up and I couldn't take the wrapping so I removed it. I feel like a loser that I can't take much more stress now.
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ladies I'm on my 8th Taxol heading to 9 on Monday- it's been in some ways worse for me than AC - my fingers and toes swell under my nails and 'pain' but it's tolerable... I noticed this week though that my tiredness is out of control.... it's like a sleep I can't get away from around 4:30 every day pure exhaustion and sleep- three hours! Lol then back to sleep at 10! Then sleeping until 6am - yet only a few weeks ago I was like you - NOT SLEEPING! Lol the bone pain is pretty bad... but I am just resting as much as I can and working from the office only a couple of days --- I have four more to go and also question if I can do it!
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Abloorable- I always question myself how many taxol my body can take, with the weekly schedule your body doesn't has enough time to recharge. I found taxol is not easy as the MO said, I will do as many as my body can handle. If not, I guess it is time to stop
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Brightness and Paulette, you are braver than you realize. I know this is scary and stressful. Dragging yourself back into the chemo boxing ring every week to get knocked down again - seems like insanity! On my good days I could force myself to view each infusion as a dose of magical, modern drugs that would drastically increase my chances of raising my child to adulthood. Be easy on yourself and don't expect too much. Allow yourself to rest as much as possible and rely on the kindness of family and friends to help. They WANT to help you! Stay strong and keep coming back to these boards for support. We know what you are going through!
Rest well everyone!
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I hope I'm as brace as you said T-Sue, I have been kind of down this week, Taxol #3 is on Friday 🙏🙏🙏
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I had my 6th Taxol this week and I experience SE as cumulative. I am determined to do all 12 of them though but I feel it is not going to be easy.
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good morning ladies I’m new to BC and this site, I’ve had my surgery and start AC next week, since you are all Taxol pros I just have a couple questions,
Why are you doing weekly vs DD?
Do you find that ice packs on wrists and ankles help cut neuropathy symptoms?
How many of you still have chronic neuropathy?
Any of you have young children? How has Taxol effected mom life?
Thanks ladies!
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Wonderwoman
I am a mom of 3 Littles ages 10, 7, and 4. I started dose dense AC June 2 and have my 9th out of 12 weekly Taxol tomorrow. I meant to ice my hands and feet at the beginning but never did. I haven't really had any issues with neuropathy. I've had some tingling here and there but nothing major . I would have to say that while on Taxol I have been pretty productive. I can drive any day, get up and get the kids ready for school. I get a little nausea here and there and after round 7 started to feel more fatigue and achy. Overall though I have found it to be tolerable. My husband helps a ton so that is a plus. Best of luck with your treatment.
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Most recently my nose starts a little bit of nose bleeding I remember someone talked about this few weeks ago. I know it is due to dryness inside my nose what should I use to help? Does anyone know?
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Paulette: I saw someone suggest using Ayr Gel spray for their nose ... Hope something helps!
Wonderwoman: Welcome! To answer your questions:
- Why are you doing weekly vs DD? I don't know that I had a choice. My doc said I was doing the 12-week regimen, so that's what I did. My guess (?) is that the risk of an allergic reaction and/or the increased SEs because of the DD have swayed her more toward the weekly protocol. (I did see some research online that the weekly was 'preferred' because of early indications that the neuropathy doesn't resolve as well with the DD as it does weekly.)
- Do you find that ice packs on wrists and ankles help cut neuropathy symptoms? I don't use them. I've finished 3 Taxol treatments and (so far) have minimal/periodic tingling. I've been using B6 and B12 supplements, along with 3 doses of L-Glutamine powder a day (1T each dose). I also get weekly hand/foot massages. I'm hopeful this is sufficient.
- How many of you still have chronic neuropathy? Haven't finished
- Any of you have young children? How has Taxol effected mom life? Well, mine are 16 and 13 so not 'young' per se. I would say the A/C was harder on us as a family than the Taxol has been. I was out of it mentally, felt lousy a bunch of days in a week, and our weekends suffered (those were my bad days). With Taxol, I'm way more active and feel much more like myself. I think a huge lifesaver for us has been a Meal Train my sister set up. She did it post-op for me (four days a week) and re-did it when I started my fourth A/C ... we now have meals coming twice a week through the end of October and it's awesome.
If you're new to the site, check out the thread for "Starting chemo in September" (or October maybe) as well ... the ladies in my July group are amazingly supportive.
Best wishes to you --
jen
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Thanks JenRuns!
My OM suggested 12 weeks taxol he said it is easier for my body and I'm a golden girl. With taxol I lost appetite for a day or two but overall my experience is much better than AC. I haven't feel much pain could be I only have 2 taxol infusion. I am counting on the pain will come later on. I just hope my red and white blood cell count are good enough to do all 12 or I might need a break in between.
I take my B6, and 12, the Glut powder 3 days. Also I do a little ice socks and hand icing during taxol hope that help out my nails and neuropathy. I know it is wishful thinking because there is no proof it works
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paulettek- for my dry nose, I used Ocean Saline spray and Ayr Gel that you place a dab of the Gel on a qtip and gently coat the inside of your nose being careful to not go into nose too far. While on Taxol, I carried these items with me wherever I went. Seemed to cut way down on nosebleeds for me
Also, reference icing hands and feet, Sloan Kettering has a PDF on icing. They recommend it to help nail issues from Taxol.
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Wonderwoman. My MO said the weekly taxol has a lower incidence of symptoms and the efficacy is the same or a little better. Also, travel time to my infusion center is 10 minutes. I'm early in the process, #3 today. I have iced for the first 2, and have a little tingling/numbness in my toes since #2. I have not heard of the icing of wrist and ankles. I am icing my hands and feet. Where have you heard about that?
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Wondermom386, sorry you had to join us but you will find a source of support here. About the choice of the treatment you have to ask your oncologist. According to my doctors and nurses, I am not in US, I am in Europe, the icing cannot prevent neuropathy, nothing does actually. If it gets bad they postpone the treatment or stop it. The nurses are saying that vitamin B6 helps in their opinion but there is no research that proves it. You can ice your hands and feet to prevent nail lifting. I have been told that I will not need it with weekly Taxol but my clinic offers both socks and mittens so I am using it. I also suck on the ice bits during the infusion to prevent mouth sores. I have an 11-year-old and she spends a lot time with her dad, I am very tired and still trying to cope with my diagnosis. Now when I am half done through my chemo I experience the cumulative SE. How old are your children? I still think that Taxol is doable especially in the beginning.
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Paulette, I'm sorry it took me a while to reply. My nails are very brittle and discolored but not black , and my hands and feet are halfway numb but I'm still able to walk and move my hands. I try to stay as active as much as my body will let me. I have gained almost 40 pounds due to the steroids given during chemo. My hair on my head is growing back, I think it started growing back when I started my third weekly taxol. My eyebrows and eyelashes fell off two weeks ago though. Weird how that happens. All in all, as it was once told to me, “there is a light at the end of this tunnel" , I didn't like hearing that but it is very true. Im so happy that I stuck it through and now I'm done with chemo. You can do this!!!! I had my daughter September 2016 and so I kept taking my prenatal vitamins since I had a ton of them and I never had to stop treatment or get a blood infusion. I drank plenty of water as well.
Someone asked how taxol has affected Mom life. I have a one year old and an eleven year old. For me, Taxol was easier than the AC. Just make sure you get your beauty rest and you should be able to function maybe not normally but properly. Some days are tougher than others though. If you feel like you need help, make sure to ask someone. Don’t push yourself too hard.
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I made it through treatment 3 yesterday. I don't have any terrible SEs at this time and I hope it stays that way. I got a cold after the first treatment and it's not completely gone, but almost. This week has been very stressful for multiple reasons, but next week should start getting back to normal. I'm hoping that helps me cope better with everything.
It's funny how this dx changes your life forever and everyone is kind and sympathetic when they first hear the news, but ultimately people have to go back to focusing on themselves and their own lives so we must learn to cope on our own. I'm no longer married, so although I have family and friends who love me and help with specific things when asked (I have a wonderful cold capping team carrying me through that process), I feel ultimately alone in my life. When I cry, there is no one here to comfort me. Some days I am not touched by anyone. I think that really makes it harder. I feel isolated in many ways. Then I remind myself that if I was still married, I'd have to deal with his ugly temper, drastic mood swings and his inability (choice) to be faithful. At least that part is over. Still, when I used to dream about the future, this is not what I dreamed.
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Brightness, I am so sorry you feel this way, it is very hard, I agree with you. I have my family here and even though I have a supportive husband in the end we are facing this illness alone, there is no one who can make it go away. Do not hesitate to ask for more help, people usually want to help you but they do not know how one friend told me, if you give them a specific task they will be happy to do it for you, like ask them to do grocery and come to your place to help you prepare a meal and eat it with you. It will be a whole evening with someone and next time they will know what to do for you. Or ask them to go to the movies with you.
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travelhound: i read an article that by wearing the wrist and ankle cold packs it slows down circulation causing vasoconstriction and slows the drug from entering hands and feet as much thus helping prevent neuropathy and nail lifting. I will try to find it to post.
Cherry-sw: im a new mom my daughter is 5 months, i had surgery first so its been awful not being able to pick her up these past 4 weeks. I was then able to but i just got my port placed and they say no lifting her for another 4 days. Its torture but having her is very motivating to beat this beast. My husband is very supportive and we have a big family that loves to help so we are lucky, i just want normalcy and im hoping that during chemo i will atleast be able to participate in the family unit and be active in my baby's care.
Brightness456: you are not alone, we are here for you, maybe not in physical form, but we are here. Yes i have family in my home, but you women are the only ones i know who have faught and are fighting breast cancer, none of my friends co workers relative or even distant relatives have gone through this experience, i feel very isolated too.
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Brightness- I heard people talked about Cancer is a lonely path, because people can't understand how we actually feel. My feeling is yes our heart has to deal with this beast, but don't forget we have people who love us also. I have no kid, all I have is my hubby to take care of me, and my parents passed away already. I'm pretty active here, you always can find me.
Cherry, wonderwoman, Dawleswim - ladies you are wonderful mom, I don't know how you did it, you are just awesome!!
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Brightness, I'm so sorry your feeling so down, it hurts to hear you long for a hug. But as you've read, you've got our cyber hugs, and my prayers. Being married isn't keeping the loneliness away, I do feel your sadness in that way. This dumb disease isolates us because we keep so much inside. Some because we know others don't or can't understand, and others because they understand too well and we try to shield them from all our fears. But on here we all know and it does help. I don't know what people did before the internet.
To all the mothers of little ones and not so little ones, you are my heros, God bless.
Hugs,
Theresa
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Taxol #3 yesterday was without event, and there was no increase in SE so far. No increase in toe numbness. I saw my MO afterwards. I am triple neg and I've been reading some scary stuff on the boards, it has had me pretty down. She was reassuring, which is helpful. She recommended I start the glutamine that so many others are taking. She also told me to stop reading the triple negative web sites.
I'm post-menopausal and have issues with vaginal dryness, so much so that if it is untreated it makes vag exams excruciating. MO told me to stop my premarin cream long ago and the problem is getting worse. I figured once I start hormone blockade after chemo that it will become impossible. It will probably just snap shut. Yesterday she prescribed a hormonal ring that is inserted in the vagina that is compatible with the hormonal blockade. She recommended I do that soon.
Got my genetic testing started yesterday.
Brightness.I too live alone.Never gave it a thought until this happened.Thank goodness for good friends, but I hate to be in a position to be asking for help.I see posts from folks whose spouses are taking them to this and that and I'm jealous.I watch the neulasta comercials on TV with the loving souses and I feel alone.This is an isolating disease when you are going through chemo, especially the kind that makes you sick and tired. Every time I looked at events coming up, I just had to shut them down."nope, can't do that, can't plan on that." Turning down invitations. Now with the taxol, I actually can plan to do stuff, but it's a mental hurdle.Good advice Cherry.
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So excited for you Peachy..I found out today I only have 2 more taxol treatments and not three. My last chemo will be on October 13th..a week after that I will get Herceptin only and only Herceptin every three weeks for 9 months I think. I am also getting a brain MRI on the 11th because I am getting reoccurring dull headaches. Will also get an abdominal ultrasound because I continue to have this abdominal pain. I am so excited to have one less chemo then I thought. I must have miscounted somehow. So anyway another Taxol/last Perjeta/ and Herceptin in the books..ready to ride out the week and go out for breakfast in the am..have a great weekend ladies..hoping all of our side effects are mild for all of us.
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Sending hugs to all of you! What wonderful advice and support you offer. So encouraging!
Paulette, I have also had lots of nose issues. And at almost 6 weeks pfc it continues! I've found Ayr spray gel helpful. At nighttime I also use petroleum jelly on the inside and outside (so chapped from tissues).
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T- sue - I got the Ayr gel and you qtip to put inside my nose, it seems to help last night.
Hhuey don't over thinking, I just did ultrasound for my thyroid this Monday, we do one day at a time, hugs
Travel - I'm meeting girlfriend for lunch tomorrow finally I made lunch plans now, Friday infusion sucks couldn't make plans for weekend. Now I can!
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Question: Are any of you taking Biotin, iron and b12 vitamins during Taxol? Or a Multi-vitamin?? I finished AC and I did 3 out of 12 Taxol. 9 more to go!
I am getting the smallest stubble on the top of my head, not enough to see or brag about but I'm feeling patches of it! My hair was dark but these stubbles look blonde. My husband says its gray but im going with blonde!
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