Weekly Taxol group
Comments
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hugs janiner! How are you feeling since your surgery? I have mine in a couple of weeks. But a lx is much easier than a mx. I'll be happy to get it " out", you know. It's been hard living w it for seven months, but then it was exciting and hopeful postpartum when it really started shrinking. I am not really looking forward to my path report unless it's good news. The docs said I was either stage 2or 3 at Dx, so it's kind of a mystery. Not sure how many nodes involved. Cancer sucks, doesn't it? Prayers and good thoughts to you too!
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I'm feeling good/great from surgery. Two surgeries in three weeks. Easy compared to chemo! Obviously it will be harder for you with little ones. I was always so thankful for surgery first. Always saying to dh that I just wanted it cut out. I couldn't imagine having it in my body. You will be just fine though. Lean on people to help and take the pain meds even before any pain. I will have my port taken out the same day as your surgery. O will have you in my thoughts that day.
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Janiner, That allergic reaction sounds scary. Often the reaction to Taxol is not to the drug itself, but to the preservatives, fillers, or something like that. Abraxane is sometimes tolerated by those who cannot tolerate Taxol. But being done sounds really nice too!!! Thanks for your detailed accounts.very helpful
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kbee- this is my ignorance showing, and is unrelated to taxol. If all of your Breast tissue is removed and you no longer have ducts, how does one have invasive ductal carcinoma?
Thanks for entertaining my dumb question.
Jena
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Hi BookLady, my MO prescribed Neurobian for the neuropathy - I've been taking it since week 3 of Taxol and I am now in a Week 9. It has definitely helped with the neuropathy and she has told me that I should keep on taking it after I've finished.
MJS1266, I can so relate to the fatigue on days 4 and 5 ... day 7 is probably my best day and then we start all over again. I still have to experience the joys of AC but, like you say - it works and that's the main thing.
Be kind to yourselves ... thinking of you all xx
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Question for you weekly Taxol Ladies!!!!! I have decided to refuse my 4th round of AC, I am having too many cardiac SE and am very worried about my heart and the damage that I may have now, or will develop later post AC. How many of you ladies only had 3 of the 4 AC treatments and went on to your weekly Taxol? did the MO decide to add Rads to you because of an inability to take round 4 of AC. I did have an Echo on wednesday, but my gut is telling me no more AC, so I have to listen to the gut feeling
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jlstacy, Even with mastectomy, there is less than 1% of breast tissue remaining. My first new tumor was right where the original one was, but was right under the skin. It made me wonder if when they did the core needle biopsy if it didn't deposit a few cells there. The second one this time was found high up in the Axilla. There was neither lymph tissue nor breast tissue tehre. I guess it's like if BC grows in teh bones or lives. It's still BC but just somewhere else. In this case, the cells were consistent with IDC, but it was growing in the soft tissue. Apprently my body likes to make cancer. Hopefully between chemo and rads, it'll blast the hell out of it once nad for all this time so I do not have to ever look back!
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I will be starting taxol (weekly for 12 weeks) plus Heraceptin on the 30th. I am nervous about the treatment but also relieved, since I had initially expected that I would need AC as well. It has been helpful to read how different people have responded to this treatment. I just hope I can keep functioning at a reasonable level, as I have two teenagers and my own business.
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My last taxol treatment was the week before Thanksgiving and my feet are still numb and hypersensitive, but don't get as painful. Fingertips are slightly numb also. I was told a few months to a year for the neuropathy to get better. I know someone who's mom still has numb feet years later.
mm
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Hi everyone, I had my first Taxol last Friday, felt a little dizzy for a minute during it, but on Saturday, my feet hurt sooo bad that I had a very hard time walking and my cheeks and nose were red, have any of you had any of these things happen?0 -
I wonder if the redness was from the steroids - they make my nipples bright red for a day or so! (Sorry for TMI, but you know, we're all here talking about our boobs). I have not had any pain yet, though, beyond a few twinges here and there. I just had my third Taxol today.
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6doggies You should try icing your feet and hands to prevent/reduce neuropathy. I still had some neuropathy but it was never painful just numb.
Good Luck,
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6doggies...my face turned red (with rash) as well as my arms and fingers for a week. It all didn't itch (thankfully) and it got redder if I were hot. Luckily, I haven't had it since (it was a few weeks ago) but I'm now having neuropathy on my feet (second week in a row.)0 -
Hang in there friends.
I am now 9 days out from my last treatment and I feel amazing. Some slight neuropathy still but nothing like I had. I have hair covering all but the very front of my head. It's much darker than my natural color and is straight. I had curly hair. All other body hair is also growing except lashes and brows. The ones I had left are falling out. I'm also sleeping. Something I haven't done for 7 months.
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6doggies, do you feel nerve pain or does it feel like your feet are burned on the bottom? If it feels like you walked on a hot street in bare feet you may have hand and foot syndrome. I went through that and it felt painful just walking on the cracks between my tiles. It felt like my feet were burned and blistered and later I found out that's exactly what happened. I had blisters very deep inside that slowly pushed to the surface. Now the skin is peeling off. Best thing to do in that case is not to take any hot showers, keep them slathered in Aquaphor or something equally thick with socks on and try not to walk if you don't absolutely have to because it can get much worse.
I had to take this week off of chemo because my onc said my body is not recovering the way it should be. My blood counts are still very low. Also she is concerned that I started feeling neuropathy in my fingers after the first treatment. I hope it doesn't stay that way. I'm also totally fine skipping a treatment and she says I don't have to make it up. Today I felt more energy than I have felt since I started this whole thing and it was amazing.
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Hi Brandi999, Yes, that is it exactly, it feels like my feet are burned on the bottom. They are not as bad as they were over the weekend, but they still hurt a little. Tomorrow is round 2 of Taxol, I have my fingers crossed that this was a one time thing!! My fingers are also peeling really bad, I have been putting lotion on them, but so far that hasn't been helping. Thank you for the suggestions, I will definitely start putting thicker lotion on my feet tonight!
I started taking Glutamine last week right after my first treatment in hopes of not feeling neuropathy, so far so good, I have been taking it every morning. I'm glad that you are feeling good, this entire journey is exhausting, on the body, mind and spirit but better days are ahead!
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Glutamine should be 10 grams 3 times a day, so a total of 30 grams a day. Also at least 50 mg of Vit B6 to help prevent neuropathy.
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6doggies, my oncology nurse told me that the steroids can cause the red skin on your face etc.
Has anyone gotten restless leg temporarily from Benedryl? I did today with my first Taxol infusion. Weird.
Jena
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jlstacey - was chatting to a friend yesterday about my treatment & how wobbly Phenergan made me (I'm given that instead of Benedryl) & she said her daughter gets Phenergan for bee stings - she's highly allergic, and it gives her restless leg. So probably normal for the antihistamines in high doses.
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I heard that what icing does is keep the chemo from that area. SE's are bad, but for me I wanted the chemo everywhere. That is a personal decision though and what I was comfortable with.
mm
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Jena, my honey gets restless legs with Benedryl also.
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missingmercury, I'm with you, I want the Chemo to go everywhere too; my oncology nurse had me eat ice chips while I was doing AC so that I didn't get mouth sores. I can't even look at ice now, it about makes me gag.jlstacey, yesterday was my second round of Taxol and my cheeks are red again today, saves putting on makeup. LOL I told my doctor about that and he also thought that it was probably from the steroids. But thank God me feet aren't hurting anymore.
Brandi999, thank you again for the information, I started taking the glutamine at lunch and after dinner too!
Have any of you not been able to sleep that night of your treatment, I only can sleep a few hours and I'm wide awake.
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I don't sleep well the night of treatment...as it goes on, I have more trouble sleeping...I might ask MO about something to take.0 -
I find treatment day very tiring and I do sleep that night; I think the Benadryl and the Ativan that they give, me makes me sleepy. But the next night is a different story, I cannot fall asleep and cannot stay asleep - probably still leftover steroids.
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So far I haven't iced. I'm on the fence about it. My fingers were tingly briefly after my first infusion- I mean for like ten minutes. I was really loopy from the Benedryl. They have told me they will halve my Benedryl dose and give to me over a longer period of time for my next infusion. Hopefully no restless legs then!
6doggies- I'm having a little redness in my face too, as well as being warm. I'm usually really cold. It's in the twenties here in Michigan and I slept in a short sleeve shirt and no hat on my head. That's pretty unusual for me!
I haven't been sleeping well period. I have anxiety and depression and insomnia. I've been using Ambien more lately.
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Hi ladies- I've been reading the past few pages of posts and catching up. I had an awful time on Taxol with just about any and every side effect imaginable.
The good news is I finished Taxol Oct 6 and honestly believe it's finally worked its way out of my body, and while almost 5 months seems like a long time for SEs to fade, improvement began within a week of the last dose, making things a lot brighter than they sound!KBeee- I'm sorry for your recurrence. Mine was similar, though 7 years after my first diagnosis. Post bilateral mastectomy, a tumor grew in the exact same spot as my original one (right next to my implant), and I also had 11 positive nodes in my underarm and clavicular areas (out of 18 nodes). It's awful and scary to have a recurrence, BUT I'm thankful beyond words it's considered "local" and therefore not "true" Stage IV. I had 12 weeks Taxol, 4 rounds FAC, a lumpectomy, ALND, ovaries out a month ago, almost done with 33 rads, and will begin Femara in a few weeks. Hopefully I'm done with this beast this time!
For everyone else, here's my 2 cents about some of the SEs you've all mentioned. Hopefully some of you will find some suggestions that help:
Benadryl/restless legs- My reaction to such a large dose of Benadryl was so severe I looked like I was having a seizure! Believe it or not, a super strong dose of caffeine calmed me down within a matter of minutes. Thankfully a brilliant nurse walked in, asked me if I have ADHD (I do) and ordered the other nurse in the room to bring me some hot tea with 4-5 bags in it. Whether or not this would work for someone without ADHD I don't know, but it's worth mentioning it counteracted what the Benadryl was doing to me. I only had steroids with my first dose of Taxol, so we know for sure it was the Benadryl. For the rest of my Taxol infusions, I instead took a double dose of Zyrtec 4 hours before chemo, which worked great.
Red face/rash- My dr called it "Taxol Rash" and says it's pretty common. Mine would come and go, but my cheeks seemed to stay rough the whole time and would flush easily throughout Taxol. In fact, I felt I was more hot than normal from the neck up. My skin was also a disaster on Taxol with lots of weird breakouts, however it didn't recover as it would have if I normally get a pimple, so don't pick at your face! I've rarely had skin issues in my life and now have little scars all over where I messed with bumps during Taxol.
Blurry vision- I had this from the first dose and was unable to drive until a month after I finished Taxol (I thought I was going to go crazy!). It's a form of neuropathy and very frustrating. I highly recommend getting the individual vials of natural tears and using 5-6 a day to flush your eyes, especially in the first day or two after infusion.
Hearing- My hearing also seemed to be worse at times. This is also apparently a form of neuropathy (as is the inability to fully empty your bladder, which wasn't that big of a deal but I had it as well).
Dizziness/ Lightheadedness- I also had this from the first dose and didn't notice it improving until 3 months after Taxol, however I did follow Taxol with FAC, so that may have extended it. I thought I would never get past having to hold onto something in order to stand up!
Tastebuds- I held ice in my mouth during Taxol and never had taste issues except the one week I forgot to do it, then everything tasted like cardboard and metal, so it seems like it really helped.
Icing fingers and toes- I did this and believe it's the reason I didn't have numbness in them until after dose 10 (and the numbness wore off after Taxol pretty quickly too). Icing isn't fun at all, but I'd do it again.
Painting nails black- I did this too and came through Taxol with completely healthy finger and toenails- not even one spot. Considering Taxol was so hard on me, I feel like it must have worked? One day I took off my polish and didn't have time to paint them again until the next day, and my nails were sore for a week, so I'm a believe there's something to Taxol making your nails sensitive to light!
Pain- It seems everyone has the bone pain from Taxol. Someone above mentioned their feet being the worst, which was the same for me. They'd throb to the point they'd wake me up in the middle of the night, and stepping out of bed in the morning was brutal! The only things that helped were Tramadol and rubbing my feet with vicks vapor rub.
Dryness/Pain- Another survivor on these boards suggested putting a squirt of glycerin in every handful of lotion and OMG does that help! It even helped my foot pain because it penetrated into the soles of my feet and heels. I use Now Foods brand glycerin and honestly will probably use it forever now that I know about it. I even pat it over eye cream etc now. It's kind of like putting saran wrap over the lotion.
I hope these help at least one of you!!
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Hey Texas94....I also go to MDA there in Houston. Thanks for all the info on Taxol. I didn't think about taking zyrtec with Taxol (hear about taking Claritin with nuelasta) so I think I'll try it.My feet and fingers have nuerapthy and I may look for some glycerin as you suggested. Is this in the vitamin section of stores?
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I have a question about nails. After how many rounds can one expect issues with nails?
I have not been icing my fingers/toes during Taxol and I do not use any nail polish (I have not patience for it). I've had 4 rounds of Taxol so far and I have not noticed any nail problems yet. I've always had rather thick and strong nails. Does it mean I might escape without nail problems, or does it simply take more rounds?
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wrmbrownie- I know you can get the glycerin at Whole Foods, though I'm assuming other stores have it too. Like I said, I use the "Now Foods" brand and am very happy with the quality. I have no idea if another brand would be as effective, but I'd assume it would be similar? FYI it didn't help with neuropathy, but the improvement in my dry skin improved how things felt overall (esp my heels!).
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My mom has finished her 5th weekly infusion of Taxol and Herceptin. Just curious if others have high platelets with this. On March 6th she had normal platelets at 263 and last Friday they are at 540 (Normal is 150 to 375). Haven't found much info on high platelets in my research. Her potassium is low and they gave her a prescription supplement, but that has made her sick today. She will call the dr tomorrow about that, but just wondering about platelets.
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