Weekly Taxol group
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Yeaay Yndorian......way to go....xx
I take 1000mg Vitamin B12 and B6.....and I take a powder probiotic at night but have terrible numbness for first three days on one arm and hand.....but it wears off to just a shadow of what it was, however it never goes........
My hair has been falling out so fast so today, just one week after it started falling out my friend cut the rest off so we have some long hair lengths to use now stuck on to a cloth hair band to maybe make a fringe to add to a hat.........I feel better with it all cut off but look awful and struggle with it being another thing lost.......
I am really trying to be 100% eith this and I do think the chemo is having an effect on the mets......anyway its 2am here so I am off to bed....
Good luck to everyone having a treatment this week.,,
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Lily55 - The hair band made with your own hair is a great idea. I have one and works perfectly under scarves or hats. People in chemo always ask me: you still have your hair? It looks very natural.
I suggest you to try apricot seeds, they are plenty of vit b, specially b17. I take a few every day.
I wish you a good time and low SE untill your next infusion. Kisses
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For those of you that are taking B-6 and/or Lglutamine, do you mind sharing the study that says it helps with neuropathy? My ON says there are no true studies that show a correlation. I have searched online, but have not been able to find a credible source. I would like something to show him, as he only says that exercise for 30 min a day is the only thing that has shown to reduce neuropathy.
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I would like to know if there is one as well. I have taken a b complex vitamin since the beginning of chemo as recommended by my MO to help with several issues, including energy. I have had 2 Taxol with little to no neuropathy so far and would like to think the b complex is helping. I am not icing during treatment
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Thanks for sharing Mncteach! Going to the beginning of this thread it appears the regimen has been given all the way back to 2012. I would think there would be something that supports it by now. I am icing, but I would like to do all that I can to prevent it.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3385273/ Here is one article on l glutamine. I took it—30 grams per day—along with 100 mg of B6. It seemed to work for me. My mistake was not continuing it for a few weeks after the end of chemo, as the nurse had suggested. I ended up with a numb big toe, which eventually resolved.
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THANK YOU!!! PatinMN-I really appreciate the link and insight you have provided.
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I really need to hear some other people’s opinions on the choices I may have to make at my Taxol appt tomorrow. I have already been having a hard time getting thru the treatment but I am halfway done with tomorrow being #7. I have developed hand foot syndrome where my hands burn and the bottoms of my feet are peeling off. My nurse said we may have to rethink things. I researched this and it is usually handled by greatly reducing the taxol dose or stopping altogether. I’m super emotional and my DH was the most upset I have seen him so it was hard to discuss with him. Has anybody else dealt with hand foot syndrome? I’m worried about stopping taxol or even lowering it, but I’m worried about permanent hand and foot damage. I’m stressing out so much. I want all the benefit of taxol since I am stage lll. Any advice
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Nanomom11: I didn’t have hand foot and mouth. I did have a serious chemo rash. The top layer of my skin came off my right arm up past my elbow. I also had bumps all over the tops of both hands and wrists and some on my feet and legs. I also started to get some neuropathy after treatment 10. The MO reduced my Taxol by 20% for the last two treatments. My last treatment was a week ago. Most of the rash is now gone. I have a very small amount of tingling in my feet and hands. The reduction worked for me.
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Nanomom11- I have severe skin toxicity due to taxol not to mention neuropathy where I can't feel my feet. I also had a reaction to the taxol and have to have extra premeds to tolerate it. My MO did lower the dose. I could not have made it through - I have one more - without the this. It is still hard, the fatigue is extreme. There are other drugs, which we discussed, but the chances of my insurance approving, were slim. The lower dose has been tolerated, but at a price of large doses of steroids. The skin toxicity has not resolved but I don't know how bad it would have gotten if I had not taken them. I hope you and your MO can figure something out.
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Nano--After my 1st Taxol treatment, I had slight tingling in my left foot. The ONC said to take B12 500-1000 so that it would not be permanent. I've taking the B12 and now I rarely have tingling. I just had my 9th tx today. But to be fair here, I am MBC and to my knowledge we get lower dose's than early stage. I know that my dose is 126. In the first few weeks I really had no SE's except slight fatigue on day 3/4. BUt these last two sessions have caught up with me. Now, I was fighting extreme depression for the last 5 days of each cycle. I layed in bed and didn't care what happened. ( I've dealt with depression for over 30 yrs, but this felt different) So, at my infusion this a.m I asked ONC if the steroids caused depression like that. She said that was a possibility so she halved my dose of Decadron. I'll let you know if it worked.
Annie-- I'm so sorry this has been so hard on you. Sending big cyber HUG to the both of you. GOD Bless.
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Anecdotal, but my MO held out Taxol #6 as a key milestone. He said it was important to do what we could to get halfway through without reducing the dosage, but after that, reducing Taxol or stopping Carboplatin (I get both) had less of on impact on outcomes.
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Kber,
thanks, that’s reassuring. MO reduced Taxol to 80% for last 4 treatments due to neuropathy and hand/ foot syndrome. Plus, pneumonitis still a bit of a bother. Thus, dosage reduction has helped to manage through. Although, I definitely can feel chemo accumulation getting to me. Nearly done now. 3 more rounds to go.
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Angie - hang in there! I'm finding the past few a struggle, but you are where the light at the end of the tunnel should be getting brighter! You've already been through so much - you've proved you can do this!
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Kber: I'm planning to drink oral DMSO every day after finishing chemo. DMSO is a great font of organic sulphur wich is an essential tissue builder. I didn't drunk it during treatment because it causes corporal odor very noticeable. I'm now having MSM, which is odor free but it isn't the same. You can try dmso cream in your hands and feet. If you search in google you will find that dmso has an accion against cancer too.
Good luck with your last taxol tomorrow. I complete understand you, I'm feeling like you. I have my last on monday. Send you kisses
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PICC line should feel similar to getting regular IV line placed. Slightly uncomfortable but not a huge deal and should be quick. Margun, so far Taxol easier than AC, but have only had one. Are you to get weekly for 12 weeks or 4 every 2 weeks or something else.?I have heard that there is more nausea and so forth with the high dose, whereas the low dose weekly is more the neuropathy. I had one "down day" 3 days after, and some fairly mild aching as notdefined described. I am just freaking a little bit about the EVERY SINGLE WEEK for TWELVE WEEKS part--but, trying to just take one week at a time and it will hopefully go by fairly quickly. Also, I already had my surgery so do not need to anticipate surgery once I finish, (will have radiation), so I think mentally maybe that makes it a little easier.
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LoisWB Hi and you are only two behind me, my oncologist refuses to say how many sessions i will have just says we need to see what happens which i am finding hard.......as there is no goal or date to work towards....
I am on a break this week and its now day 9 after my last chemo........and i feel pretty good, had a fairly busy day yesterday and did more today too....so at least I know that it is having a positive impact......which helps.....
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Angie you're almost done yay!! Hand in the you can do it. Sorry you're still dealing with the lungs but hopefully once it's all done you'll begin to recover faster!! Sending you tons of hugs too
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Lily55, I'm glad you're feeling ok. Take it easy and let the chemo works for you. Send you kisses
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My oncologist lowered the dosage of my last three Taxol, at least that is what she told me. The neuropathy in my feet is intolerable! My hands are getting better, but I’m slowly losing my fingernails & some toenails. I’m finding myself in constant danger of falling. We are on a little vacation at the moment that has been nice, but I’m having trouble with my walking. I’ve always been a walker & I hate that I can’t walk much at all & worry now about falling. My side effects are getting better, but the feet are worse
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Angie-I have also been struggling with hand/foot issues that are really bothering me in my right foot. My symptoms are extremely cracked and peeling feet on the bottom and a completely numb toe. My nurses seemed like they were ok with it and said to put lotion on the bottoms. I went on with tx 7 but I’m worried about progression. What are you doing for yours? I’m thinking about asking for a reduction also. Did it help your symptoms
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Pommom, try to hanf in there. The neuropathy does get better once this is all over. I finished 2/22/19 and I am 70% better than I was during my last 3 doses. My feet still have numb spots but at least I can walk now without fear of toppling over and I can do most things with my hands. Yesterday I was making a,new too and my hands surprised me as to how far they have come. I'm sorry you're having suxh awful issues nut five it 6 months is what they told me. Now I'm on Kadcyla and my worry is that my neuropathy is going to go backwards again 8(
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nanomom,
neuropathy was very mild at beginning of Taxol. Only since last 3 round or so that I’ve really noticed hand/ foot syndrome. More so of numbness and pulsating warm hands with pins/needles on the soles of the foot. Sometimes, it feels like I’ve got really thick gloves on. Finding that I can’t grip on to things very well. Oncologist has not prescribed anything special, so only taking vitamin B supplements. Not sure it’s helping that much.
I try to exercise at the gym once or twice a week to help with cardio and overall strength training. Can’t be certain that it helps with neuropathy, but at least helps to keep muscles from becoming too weak.
I do feel that the neuropathy is starting to become more noticeable. Oncologist agreed to lower dosage to 80% for last 4 rounds. It’s only been a couple of days since treatment #9, not really sure there’s a noticeable difference yet. Only 3 more rounds to go, so hoping neuropathy won’t become a long term problem.
Definitely is worth discussing with MO regarding how much neuropathy is affecting your quality of life. Hang in there! We’re almost at the finish line. Sending you lots of healing energy
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I have been off taxol for one month now. I have noticed that I am all of the sudden getting neuropathy. My whole leg seems to tingle at times. Is this normal that the neuropathy can occur AFTER the taxol is done? I tried using CBD cream with some THC and it helps a little but I am having surgery on Monday for a bilateral mastectomy. I figure it will either go away or I won't feel it because I will have other things to think about. But is this normal to get this after taxol?
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SLLO - a number on people on the boards have reported their neuropathy starting or getting worse after Taxol ends. I meant to ask my MO about it and forgot. You reminded me to bring it up next opportunity.
Good luck with everything!
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SLLO, my MO told me that it is normal for the neuropathy to start after the Taxol is done. Mine started during the twelve days between #11 and #12.
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I think I notice my neuropathy more after chemo because my head was beginning to clear up (from chemo brain). I have better days now 14 weeks PFC but occasionally it likes to remind me with numbing pins and needles in my hands and throbbing feet that it's still hanging around
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I had to stop working during my Ac it was very harsh and low blood cell immune system issues. I have no assurance and I am wondering if anyone worked during taxol.it lowers immune system like Ac? It is possible to met people and have clear head able to concentrate? Everyone experienced Neuropathy or some people managed to escape? Because if you cannot drive or walk going up and down the stairs how you can work
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Margun I had my first Taxol yesterday. It went well and so far I feel fine but I didn't have many issues with AC other than loss of taste and constipation caused by the anti nausea meds. Everyone is different. I hope Taxol is easier on you
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Margum, I haven't low white blood cells in taxol, but I have another SE wich I hate more than AC's. But taxol SE are acumulative so you can expect to be relative ok almost first part of the treatment. Good luck!
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