Weekly Taxol group
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That is what I am hoping. Fingers only just went numb, so hoping they recover. Onco nurse told me to add a vitamin b regimen. Any suggestions?
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#3 done today. Have resigned myself to taking the pain pills so I can work...and walk.
Mine is like my legs are 500 pounds. The. Stabbing pains
Taking glutamine , b6. B12 magnesium.
No numbness yet. Lily rose, what supplements did your MO prescribe
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missingmercury and Tobycc, My MO had me take a B complex, calcium, magnesium and Vit D3. He was leery about me taking the glutamine. I was also on potassium but that was because I had to take Lasix for my edema. The B complex is suppose to help with the neuropathy but he said it doesn't work for everyone. I just tell myself it would have been worse if I didn't take the supplements. My legs felt like they weighed 500 pounds too! It was a chore to even get out of bed. Thank goodness that is totally gone! Some women have reported that the glutamine helped with the muscle aches. I hope you guys feel better soon. Hang in there! It will get better.
Hugs, lilyrose
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Hi - starting Taxol 12/2, and I hate hearing about the pain and trouble so many of you are having. THIS STINKS!!! Thank you so much for paving the way for those of us following you. I will be talking to my MO on Monday and getting the dosage for the supplements. Bless you all with a peaceful pre-Thanksgiving weekend. lind
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missingmercury- I'm so glad you were able to stop before your neuropathy got worse. HANG IN THERE THOUGH, because it fades very, very slowly, almost to the point you have days you wonder if it's getting better. I'm 2 months out from last Taxol and only now can I say it's very close to being completely gone.
BookLady1- Remember a lot of women find Taxol to be fairly easy, so don't let those of us that have had a hard time scare you too much! You may have very few SEs. Definitely paint your nails a dark color (fingers and toes) to try and save them from spots, pain and possibly losing them. Also consider icing them during the Taxol drip, which is supposed to help with both nail health and warding off neuropathy.
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booklady1 - I just finished 12 rounds of taxol with herceptin. The worst of it was fatigue, but not debilitating fatigue. Lightheadedness, diarrhea in the first few treatments, acne, loss of appetite but I could still eat. I was actually worse for treatments 7.8.9 and much better after for the remaining. I'm tired and have serious chemo brain. I wouldn't trust myself to drive with the baby in the car right now but I really dont feel too bad. I think keeping active, which was just walking for me, resting when needed, lots of water and supplements helped. It was relatively easy for me. No nail issues, no neuropathy, I didn't even lose much hair anywhere. Granted I cold capped, but I didnt lose much body hair. So don't immediately put yourself in the category of people with severe SEs yet. Good luc
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Texas94 and Lillyrose, thank you. Yeah my feet feel worse right now. I am already taking D3 and a multivitamin that has magnesium. Bought some B12. I will say that when I wear them (fat calves make me not wear them all the time) compression socks did seem to help a little. My onc also say this will fade slowly. I went to the store yesterday and didn't get much at all, but by the end I was limping due to pain in one of my toes.
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missing mercury, I wear the compression stocking also. Once a week I take a day off from them though. I also decided to try acupuncture for my neuropathy. My MO and PCP said it was a good thing to try. I must admit, the needles in my fingers hurt! But two days later I no longer have numbness in my pinkies or thumbs. So I am going back for more treatments. The needles in my feet didn't hurt as much, but I also have not noticed a real difference there yet. He told me it usually takes several treatments before you feel a difference. So I'm keeping my fingers crossed that this works out for me. I hope your feet start feeling better
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well, after developing same allergic reaction to taxol as I did taxotere, my MO will start CMF next Friday. Every 3 weeks...not sure how many. I have heard good feedback about it, especially those with triple neg.
Refilled my pain med prescription . Taking it on schedule keeps me on top of the pain in my hands and muscle pain in legs. Praying this cocktail will be the winner!
Did not get treatment today since they want the taxol to get out of this body. And I am retaining fluids. Gain of 8 pounds in a week
Blessings
Kath
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Sorry Kath that things have been rough for you with taxotere and taxol. I think CMF is tolerated much better but I am not sure. I hope it is for you. You've clearly had it rough. Big hugs to you.
Nancy
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Hi, Ladies! I finished Round one of my 12 weekly Taxol treatments today. LONG and slow day, but I made it. Had 1/2 amount of Benadryl in infusion because it makes me nutty, and I did well. Towards the end of infusion, I had a horrible hot flash and a horrible taste flooded my mouth and sinuses. DH Quietly told nurse, and suddenly pack of nurses decended on me! Unhooked me, questioned me, checked me over, pampered me, educated me - I was able to finish - I rested, then they pushed it slower - it was a great drill!
Thanks to all of you for sharing your experiences and for your advice. I started on supplements with MO's ok.
DaniellaD and Texas94 - thanks for reminding me that I won't necessarily be in category of women with severe SE's
Missingmercury and everyone else with those damn SE's - I hope you are continuing to feel better.
Nancy2581 - it's good to know you are here!
Hope you all have a peaceful night, Linda
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Hi Linda
Glad taxol #1 is over and it went pretty well. Kind of scary about the reaction , but boy aren't the nurses great? They are so on top of it. Hope you don't have many side effects. I had taxol #8 today and fell asleep lol. My husband said I was out cold - no I could hear the lady next to me blabbering on her phone lol. I have done pretty well with side effects. I have had some joint thigh pain that comes and goes since taxol # 6 so yuck on that. I also had the drop in blood pressure (taxol #6 again), but that is it. I'm sitting here eating frozen yogurt with Reese's on top. Yeah I know not healthy, but I get to do what I want on chemo lol
Nancy
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Monday was taxol #5. Seven more to go! So far just some taste issues and very dry skin, especially hands. I have been up at 4-5am the last 2 days, probably from the Decadron infusion. Yesterday got some baking, laundry, cleaning done and a visit to curves. Today just taking a lazy day to rest. Hope you guys are feeling well. Love, Jean
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Please don't blast me for this question, but is there anyone here who didn't do all 12 Taxol? Is there any research of women who have done most, but not all chemo? I would continue getting the Herceptin for a year & am still doing radiation in January. I will also do 5 years of Tamoxifen. I just don't want to do Taxol anymore. Let me start by saying that chemo was a precaution for me in the first place. They found no true invasive cancer in my pathology, only microinvasion. My doctor would've been ok with me denying chemo in the first place.
I have done 9 of 12. I know, soooo close to being done but I want out! It really wasn't bad for me until the past few weeks. I've had bronchitis/respitory infection for almost 4 weeks. I can't kick it, despite antibiotics, steroids, etc. I know my body just doesn't have the immune system. I am a mother of 3 children under 7 and work full time at an elementary school. Being knocked on my ass is not an option & yet that is what has happened. I do not feel like I even recognize the woman I used to be & I'm not even talking about my physical appearance. I'm saying I don't feel like me. I want me back! My kids want their mommy back. I want to enjoy the holiday's with my 3 little ones & not be the sick chemo lady laying on the couch.
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miscraw
I do not believe there have been any studies to support doing less chemo. I'm in the same position and has to do chemo because of my her2+ status. I understand your frustration but I can tell you that my body adjusted after #9 and the rest of my treatments weren't as bad, SE wise. I have a 1.5 year old and work as an attorney from home, so I completely understand your frustration. The study proves most effective course is 12x with herceptin - less chemo hasn't been studied fully yet
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Miscraw - totally understand. There is a lady here who had to quit after 9 because her neuropathy was pretty bad. I think the doctor told her it was fine. Her name is missingmercury maybe you could PM her. Best of luck to you.
Nancy
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Miscraw- My heart hurts for you! I was MISERABLE physically and mentally on weekly Taxol and completely understand your desire to finish, especially given you have young kids. I made it to #11 and had such strong, sudden neuropathy symptoms I called my doctor bawling and flat out refused to show up for #12. A week later, my scans showed such amazing response to Taxol, he told me he had zero concerns about me missing the last dose and did not think it would have added any benefit to the work it had already done killing my cancer. I was also starting FAC, so possibly the fact he knew I was getting more chemo played into his opinion as well.
Have you shared any of this with your doctor and told him you don't want to continue? You might be surprised what he says. Maybe he'll ask you to do just one more, or possibly he could go ahead and order another ultrasound to see if Taxol has done its job.
Regardless, I'm so sorry with what you're going through. I've said a million times over I was VERY thankful my kids weren't really young when I was going through Taxol. I have no idea how I we all would have survived. Two weeks after my last dose, I finally started to feel a tiny bit better each day, and my 11 year old son said, "I know you're feeling better, because you're back to your old self again. It makes me happy."
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miscraw - canuckmom on here stopped after 10. She had early glaucoma and like you, was sick, so her Onc recommended she stop. Good luck with your decision.
Let me tell you ladies, it feels great to be finished! I finished one week ago now! Woohoo!
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Miscraw, Taxol was "optional" for me, too. It took me ages to decide to do it. A big factor in going ahead was my onc saying that, in my circumstances, I could always quit if it didn't go well, and she would not be especially concerned. Your onc may feel similarly. I was told that after a certain number of tx, you have received the majority of the benefit. Unfortunately I can't remember the details! But your onc can fill you in.
That said, I want to tell you that at about week 10 I was so fatigued that I was close to tears at all times. I felt I couldn't go on, but my onc said that was a really typical way to feel at that point. So I decided to stick it out, and a week or so after the last tx, I started feeling a lot more normal, fairly quickly. Still tired but much better. However, my situation was not quite like yours, because fatigue was my only real problem. But I wanted you to know that a lot of us feel just about DONE as we approach the end.
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Miscraw, they stopped me after 9. My neuropathy is still bad. After Herceptin yesterday my daughter had to go to the mall to buy a blazer. She pushed me around in a wheel chair as the walking and all would have been too much. Since the taxol I get pains in my joints and when it is in my hands it is hard to work.
I go Monday to see my surgeon and she is doing a referral for radiation to decide if I am doing that.
mm
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Seven more to go. Monday is next one. You ladies are cheering me on. I can do this. My great granddaughter is due in about a week and I want to be around to see her grow up. Love, Jean
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Missingmercury,I am so sorry to hear about your neuropathy. I hope you start feeling better very soon! Did the other drugs contribute to that, or is it unique to Taxol? The various SEs we get, and their severity, seem so random and unpredictable. I wonder why. Of course - why do only some of us get cancer, huh? I'm rambling. Big hugs to you!
Hang in there, Jean! You are almost halfway there! Hoping you have minimal SEs along the way!
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Thanks for all the responses ladies!! I had my oncology appointment yesterday & he said he was totally fine with me being done & just continuing the Herceptin. He made the analogy that for me Taxol is like a shovel & Herceptin is the bulldozer. Herceptin is what does the hard work. He said he has some women stop Taxol after 4 & continue Herceptin if they aren't tolerating it well. He was glad we got in 9 rounds & thinks it has done it's job. So, I am officially done with chemo!! I have my first Herceptin only infusion today & it's only 30 minutes, woo hoo!!
I was one of the lucky ones that kept my hair on Taxol. It thinned a TON, but I probably had the hair of four people before it started. It's still shedding, but am hoping that will slow down soon. I can't wait to get some energy back, kick this stupid virus & move on to the next phase. Unfortunately, that means radiation will be starting soon. I am soooo dreading that. Not so much because of the side effects, but of how it could impact my reconstruction. However, like chemo I am choosing to do it. I was a grey area for radiation. I wanted desperately to decline it, but in the end I need put cancer away forever!
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Woohoo!!!!
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Great news, Miscraw!!
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great news Miscraw. I just had taxol #8 so only 4 more to go. I can't wait to be done, but then off to radiation.
Nancy
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great news!!! Anyone else have edema ?
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I have edema - it started after #10. It involves my right arm (not surgery side) and my legs. It's not horrible, but skin feels tight and I've gained about 5 pounds really quick. My MO prescribed Lasix. I honestly can't tell if it's helping. I just had my final treatment Wednesday, so I'm hoping it subsides quickly.
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Fatigue really got to me today. Wiped out on curves and cancelled my counselor. Just laze in bed all day and napped. I hate this lack of energy. Congradulations to those who are done. Looking forward to the end of this leg of the journey. Love, Jean
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thanks KP. I have cardiac issues so it scares me. I have not had a bout in two years....watch my sodium like a hawk, etc. feel better knowing it is an See from taxol. Am on lasix also. Keep me posted if you don't mind!
Blessings
Kath
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