Weekly Taxol group
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Nayda985,
It was my experience that ACSE were tougher for me because I was unable to sleep more than a few hours at a time and brain fog was worse along with lack of taste and I was exhausted.
Taxol was harder physically due to neuropathy and I did not get it bad; finger tips and toes and extremely sore nails and toes nails. I was fatigued but at least I was able to sleep more than a few hours.
Hope this helps.
S
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Hi Maneyak and nayda985,
I too went through A/C with SE's of chronic fatigue and terrible mouth sores. Everyone says Taxol is much better (including doctors) but everyone is different. I just had my 4th treatment on Thursday. I don't have any issues during the infusion which is lucky since so many do. First they give you (through your port) a combination of Benadryl and Pepcid. After that you get a steroid along with 2 pills for nausea. The Benadryl makes you very sleepy which actually isn't a bad thing. After my 1st treatment I felt wonderful the next day (better than I've felt since before the A/C) because the steroid is still in your system. The next two days I had flu-like symptoms along with shooting sharp pains through my body. Fortunately, I haven't had those SE's since. I do have minor fatigue and some foot and leg pain which only happens at night. The foot/leg pain is especially noticeable when I'm in bed. It will be interesting to see when they start this time since the last two treatments it didn't start until day 5. I'm not quite sure why this is. The doctor has given me some codeine to take so I can sleep which has helped.
I wish you both luck with your first treatment. Keep us updated on how you're doing.
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Thanks Soareagle......is there anything to take or than icing to combat the neuropathy?
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Nayda,
I think everyone takes this very differently. My doctor and nurse said this was going to be "easier" than the FEC treatment that I was on earlier. Reason is that it is a more "steady" getting the drugs once a week instead of with the FEC every three weeks. Less ups and downs. Another positive is having more contact with the medical team which for me means more calm nerves and less panic. I am on round 4 so have some way to go to the planned round 9 before operation.
My side effects have been minor so far, runny nose, very dry skin. The most difficult is diarrheas but getting medication for that which helps. I am developing a small rash but understand that is due to the perjeta and the herceptin. I am not very fatigued so far. I am actually surprised it is not worse than it is with chemo. That being said I am only a few months in so far. I have yet not lost my taste for example.
I read a signature here that reads " the fun never ends", thats right, you never know what will be around the corner. With FEC i developed all sorts of minor side effects (nothing serious) like fungus in my throat making my hole head hurt which went away as I gurgled a special mouth wash..
I hope you also will experience few and non serious side effects.
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Hi All! Just had number 11 last week. Had ct scan results and they were great, the 1 spot on the liver has disappeared and the other spots on bones have either stopped or shrunk, so for me this weekly course of action has shown results
very happy about that. This week was supposed to be my last, but oncologist is optimistic about the results and wants to keep going - no end in sight. Seeing as side effects have been tolerable, I don't see a reason to stop either, and grateful for the opportunity. Sad and happy at the same time. I still have lots of joint pain and walking helped but it was making surgery breast "ache" - (no matter what sports bra I wore) I went out and bought the entry level Bowflex ($500) - so happy I did! What a difference! Joints feel much better, it's easy to do some good with just the light weights. This model also has a rower on it and that helps a lot too. I do about 15 min of rowing and 15 on arms and legs to loosen up the aching joints. I haven't really had the pain since I started using it. Glad I splurged and bought. No mouth sores yet, just the fatigue and tiredness, I think that is because of the 2 day sleep interruption from the steroids. Number 12 this week, but more to come.Be kind to yourselves 💚
Roofcat! Happy you are done with the weekly and on 3 week rotation now. That extra week of "rest" is going to be "nice" you really are super girl!!💙❤️💛
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Nayda,
I highly recommend the following supplements for pain and neuropathy: Vitamin B6, Glutamine, and Alpha-Lipoic Acid. Find dosage info here:
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Welcome to all you new posters.
I started on the Taxol /Herceptin 12 week protocol only. I have completed eight weeks, and treatment number nine will be this coming Tuesday. I've had a few side effects, some more bothersome than others. None of them seem as severe as what others (on AC) are experiencing.
I am very tired two days after my treatment. That lasts usually just one afternoon. After about the fourth week I developed a rash on my arms and legs. I still have the rash at eight weeks.. Apparently the Taxol attacked any place I had previous sun damage and pushed the redness to the skin. It does not itch. I went to the dermatologist last week and she is not concerned at this point. I've lost about 95% of my hair and also developed folliculitis. Not only was that gross looking, it is very itchy. I have been on an oral antibiotic and am now on a topical antibiotic. I was advised not to shave my remaining hair. Dermatologist told me I could have it clipped close, but not to shave what is left. (Lost most of my hair by week five and developed folliculitis around week 6 ) On a couple of the other threads, people talk about having their hair grow on the 12 week Taxol. I don't understand how that can happen as I lost almost all of mine on Taxol.
I am feeling some of the effects of neuropathy particularly in my hands/fingers but not as much in my feet/toes. I've had occasional mouth sores, and my runny nose bleeds a bit.Had a couple of constipation issues but luckily no severe diarrhea. It did take me a week or two to come up with the proper mix of drug for that.
I take a few supplements and use a few items as preventive care. As example, I take biotin, B complex, multivitamin, use biotene, tea tree oil, saline spray.
Just four more Taxol/Herceptin infusions and then I was down Herceptin every three weeks for almost a year. I will begin radiation in late December or early January.
I wish all of you and easy time on your Taxol run.
M
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Hi everyone, I've just joined this forum. My 62 year old mom is diagnosed with Invasive Ductal Carcinoma Est+, Prog+, HER2-, between stage IIb & IIIa. She has a tumor on her breast 1.2cm and a 3.4cm tumor in the axilla that broke out of her lymph nodes. PET scan came back negative for spread. Doctor suggested treatment order chemo, surgery, radiation, and hormone therapy. My mom will have her first round of chemo this Wednesday. She will have four rounds of AC (once every 3 weeks) and 12 rounds of Taxol (once a week). I've been juicing fresh organic vegetables and fruits for my mom since her BC diagnosis a month ago. I've also been giving her immunity boosting supplements called Beta Glucan to help keep her body strong in order to deal with chemo. I want to ask if there's anyone who juice raw vegetables and fruits and or take supplements DURING chemo to help control or reduce the severity of chemo side effects? I've heard that patients undergoing chemo therapy will be very prone to infection and so I'm afraid feeding my mom raw vegetable & fruits might cause her to have infections. My mom's oncologist said it's okay for my mom to continue taking the Beta Glucan supplement during chemo because the ingredients are all natural but my mom's surgeon said she shouldn't take any supplements during chemo as it might interfere with the effectiveness with chemo treatment. I'm not sure which doctor to listen to? If there's anyone out there who know someone or personally have taken supplements and eat raw vegetables & fruits during chemo please let me know. Thank you and good luck to all who's battling this terrible disease.
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AnnKat, I'm sorry that your mother is facing this. I don't have personal experiences with juicing to share, but will note that my oncologist says no fresh vegetables or fruit that can't be peeled if my neutrophils drop to .5 or below (which they did a week after my first treatment). I would also stay away from sprouts, which have a bad reputation for harboring pathogens.
Lyn
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I think the general opinion is not to take any supplements with anti-oxidants as they fight the chemo and reduce its potency. Fresh fruits and veggies are not good for same reason plus the skins may contain bacteria so they need to be peeled first. Seems weird but lots of things that are usually so good for you are not good when on chemo. She will need lots of protein and fluids
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I asked to speak to a nutritionist today since I too felt confused. What is good and what is bad? You also get a lot of different tips from people, eat that, avoid this or that, take this etc...I am scared anything will interfere with the treatment. My nurse told me it is about eating everything "normal", breakfast, lunch and dinner combining vegetables, fruits, meats (if not vegetarian) etc. she said to stay away from too many vitamin pills. They also advised to let them know if you are interested in taking a natural approach with supplements such as garlic capsule, ginger etc in large quantities because that can totally interfere. Fresh juices and vegetables sounds healthy to me..but I am still a bit confused and only listens to my doctor at this point.
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My oncologist didn't mention the antioxidant effect of fresh produce although I've seen that mentioned regarding supplements. Rather, it's the potential for bacterial contamination. She also said to avoid eggs with runny yolks, any unpasteurized milk, that sort of thing.
Lyn
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completed #3 taxol/herceptin today. Wbc way low, also rbc and hemoglobin. Hoping it plateaus, as chemo might be postponed next week. Even though anemic, I've not had symptoms, and continued to walk and lift weights most days. Just never know what to expect day by day now. Haven't lost my hair yet, no neuropathy (I do ice, and take glutamine), no nausea, and food tastes good, so happy about that.
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Thank you Lyn and good luck to you and to everyone dealing with cancer.
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I start Taxol on Friday for 12 Weeks...I am very nervous about this next part of Chemo...b/c of the not know how its gonna affect me..but hey if its milder than A/C I am game..lol!
Kattis - TY for the info. and that saying is so true lady.."the fun never ends" its always something.:)
Bird - TY for your recommendation for the pain and neuropathy..i will be using those b/c I don't want any neuropathy or pain and I don't want to do the icing..so I gotta do something:)
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I am now noticing a clear "cycle" regarding my mood and energy during the taxol weekly treatment. I get my treatment Mondays so Monday, Tuesday I am totally "high" on the cortisone and the other medication they give against feeling ill. I can´t sleep and have a lot of energy. By Wednesday I crash and sleep almost all day plus my mood is not the best, irritation etc. Thursday and Friday some "fun" side effect will appear, the latest being a rash (nothing serious so far) I am more tired but by the weekend things are feeling a bit more "normal" again and then Monday comes again and I will be up for a few days again. The cycle is much easier to handle than the "3 week in-between" chemo FEC treatment I was on earlier. Getting it every week certainly makes it more of an "even" feeling..
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Test
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I am posting here too regarding noticing shortness of breath for my 5th taxol round. I have received many helpful posts in the triple positive thread. My nurse today said it was normal as the treatment goes a long but I should let them know if I experience breathing issues while resting, laying down asap. So far I haven´t. Just wanted to let you know if someone is experiencing this not to freak out which I first did.
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Taxol #4 completed yesterday, even though neutophils were 1.4. Now being extra careful to avoid infection, etc. On a good note, hemoglobin was up, so iron rich diet seems to be helping. Waiting to see what side effects come my way this week, Wednesday and Thursday are usually the day.
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Germangirl,
Interesting that you are so aware of your hemoglobin levels etc after blood sample. I never receive any of this types of information nor have I asked too. I take a blood sample and then I just go for treatment, no questions asked. It sounds good to be able to as you mention eat more food with iron (spinach etc) or perhaps other foods that could help with this. What is neutophils? My nurse told me to avoid vitamins during treatment and just try to eat 3 meals per day as usual.
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ANC, absolute neutrophil count, measures the white blood cells used to fight infection. At my oncology center, I have print out and explaination of results before they even start chemo. Usually, an anc below 1.5 is reason to withhold the taxol.
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Well I had my first Taxol on Friday...and it was indeed milder....which is great...A/C was hard on me....I am just a little fatigued and had a small dose of D....yesterday I started feeling ummm nerve pain that kept moving from my knees to my toes to my fingers and my thighs...I hurried up and ordered me some vit b6 and l-glutamine....got the vit b6 today...I so hope it helps...b/c I am reading that most of yall don't feel nerve pain til the end of your treatment..which is kinda making me nervous being I've only had one Taxol and its already started....always something
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Tomorrow is my 3rd taxol . Last week was just taxol and tomorrow is taxol and Carboplatin (which was the first one too) . I didn't know they alternate until I went last week . This, so far, has been easier than dose dense A/C. I've been able to return to work . No fatigue but tired . Little dry mouth and heartburn. I keep waiting for side effects to happen because it can't be this easy . I have read that some side effects happen later in the treatment , so we'll see .
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Nayda, I am sorry you are feeling the neuropathy so soon. I have noticed by reading others' posts that women who have AC first, have a slightly different experience compared to those with Taxol only. I started to experience neuropathy on #9. I had slacked on the supplements and immediately started back up. The neuropathy got better and now, one month out, it seems to be almost gone. I did ice every infusion. Along with neuropathy, I also started to feel arthritis pain in my hands and feet. This pain has not subsided. My MO says it should go away over time. I am keeping my fingers crossed.
Bird
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Bird...I took the vit b6 yesterday and it started to take the pain away....so I felt the difference...I took my vit this morning and haven't felt any nerve pain so far....so I am crossing my fingers also...:)
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Naya--what strength of B6 are you taking. They told me 100 mg once a day. When I was at my appointment today they also said to take D3 as well.
First Taxol infusion is tomorrow. Getting nervous for what this will bring.
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Seq...I am taking 50 mg a day....its helping right now..but if that changes..i will be taking 100 mg a day
Good luck tmrw Seq....I will be having my 2nd tmrw....still nervous even after having one already...:)
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I just find it so interesting the difference in recommendations of different doctors. They told me 100 mg in addition to the B complex. I still need to figure out what the D3 is for. I'm going to be icing my hands and feet too. Are you doing that?
Good look tomorrow to you as well. Lets compare notes afterwards. The NP today promised me this would be so much easier than the AC. I'm holding her to it! I thought the last round was going to kill me and I told her that today too! LOL
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Is anyone doing dose dense taxol? I'm scheduled to have 4 infusions over 8 weeks, like with the AC (just had the third round this week with minimal SE). I'm concerned that I'll have a bad reaction if it is dose dense.
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re: B6...I was told to start 200mg per day, one week before I start Taxol...and continue it until 30 days after my last Taxol. I asked about BComplex too - but nurse said some take it...but they don't feel it does anything. I am not icing, but very worried..as I already have some narapothy in one of my feet due to surgery nerve damage many years ago. Any other tips/ideas I should do? I am getting weekly Taxol, along with Herceptin/Perject (every 3 weeks) for 12 weeks. I can't even fathom 12 weeks at this point...ugh.
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