Weekly Taxol group
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I have a great quality of life on Taxol. I work full time and have a great social life, plus being a single mum to 3 teens which definitely has it's challenges. I'm hoping to be on it for a very long time. I don't take anything for my neuropathy I'm just hopeless remembering to take any sort of medication or supplement so I don't bother. I would never get around to taking enough to make a difference.
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That's awesome Shazza! I find I like the Taxol much preferably over the Epirubicin and Cytoxan I started with. Ugh! Yuck!
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Have been MIA for a bit. Just caught up. Tax#9/12 for me tomorrow. Looking back it went by fast, looking forward, 4 weeks seem like an eternity!!!!
I've been having insomnia on infusion days too. I'm either up till 3 am or if I remember to take something to help me sleep I wake up at 3 am. But LOVE how I feel the next day and I usually get so much accomplished!! Other symptoms are neuropathy in both feet, right worse than left. It feels like my shoe is on too tight on my right foot and on my left foot it feels like there is something under my heel. Like a rock in my shoe. and intermittently and very mild in my fingers.
thank you to who ever brought up the facial neuropathy. My lips started to feel numb today. So weird.
I was icing my hands but pretty much had a lil tantrum at tax #7 and decided I don't want to anymore. I never figured out a good way to ice my feet properly and the bags of frozen peas would slip off of my hands because I would be out cold from Benadryl or I'd have to get up and pee. I've heard of some MO's not supporting icing especially cold caps just in case by some chance there are cancer cells that need to be killed in those areas.
My SE's have been all over the place, sometimes there, sometimes not, D, aches and pains, fatigue, fingernails hurt, reflux, feeling like a rock in my stomach. Decreased appetite, drippy nose, bloody nose and no taste has been a constant.
Love and hugs Ladies!!!! Glad we are here for each other!!!!!
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Jules, Yes, the homemade ice or pea bags are a pain. Somewhere I posted pics of using them - putting my feet and hands inbetween double zip locked bags tied with bungee cords. My feet are always on a small stool during icing so it gets to the bottom of my feet. That's why I ended up getting two sets of Elastogel booties and gloves. Expensive but worth it to me. We submitted to insurance but have yet to see if mine will cover it. Fingers crossed, but I'll be surprised if they do. I had to have a big toe nail removed after AC and the other one has fungus and will be pushed off eventually as it's severely lifted. Ugh! Did not want to go through neuropathy or more nail loss so I'll do the icing to hopefully prevent or lessen it. With MO approval, also take L-Glutamine, Biotin & B6.
My MO has seen such good results with icing that she has started a clinical trial to measure its effectiveness. Unfortunately, it started too late for me. I had #9 Taxol today and so far, so good - no evidence of neuropathy or more nail loss. Of course, I realize it can begin even after you've been off Taxol. Ugh.
My taste buds have been so much better on Taxol than the AC, but I started to lose them again and at last week's infusion, I was told I had a little thrush (had it full blown twice on AC), and to start Magic Mouthwash gargling 3 x a day. I did that for 6 days, and all gone today. Maybe it's thrush that's throwing off your taste buds or contributing to it?
Re sleep. I've found that OTC Unisome works great for me - except infusion night. I can't take any of the other OTC sleep meds because they contain Benedryl which hypes me up. It's the Decadron steroid (two 8 mg pills night before chemo and two morning of) that keeps me awake. If I take one Unisome the night before, it knocks me out about an hour later. However, on the night of chemo, I'll take one pill two hrs before sleep and a second pill about an hr before, and sometimes still wake up at 3 or 4 am. I can take just one night without my usual 8 hrs though.
I can't really complain though about SEs on Taxol and I did ok on the AC too, except for the taste bud thing and being more tired than I am on Taxol. I know it's hard for everyone to exercise when you feel terrible, but I feel it's really helped me tolerate the chemo well.
Best of luck to you ladies with the SEs! Huge hugs to all of you!!
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Shazza, Just adding that I think you are AWESOME! What a fantastic attitude and busy schedule you have working and raising your teens. It sounds like you are handling it all with a great deal of grace, and that you've figured out how to manage your side effects. Huge hugs!!
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Shazza has been an inspiration to me since I began Taxol. Her example has helped me to continue to hang in there despite getting discouraged. I'm just blown away on how well she manages and the lack of neuropathy in hands/feet!! She does this with no chemo breaks, too!! I can't even imagine that!
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Hello ladies!
Totally agree that Shazza is an inspiration!! Love that we have this forum to lift each other up when needed!
Jules_NY- you've described my SE's on taxol to a tee....all over the place.
Someone on this forum talked about using tee tree oil on their nails (toenails maybe?). I'm getting ready to lose my first nail (toe) and wonder if its too late to start using this on my toes. Is it an oil that you rub on the actual toe nail? Just curious if others are using it and how they use it. I'm scared to lose my nail, afraid its going to hurt! Hopefully it doesn't.
Can't believe its Friday again already...I have my infusions on Mondays...almost that time again!
Hope everyone has a great weekend...
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I agree. She is amazing. I should be ashamed of myself for complaining as much as I do. However, I do have one good thing to report. I was able to taste food yesterday. That gave me a big boost.
After I finish Chemo I am supposed to see a radiology oncologist. I was told that they got the entire tumor with clean margins and removed 20 lymph nodes and only one was involved. My tumor was on the skin side and not on the chest wall. I am not sure if this is just protocal for them to send everybody for a consultation or what. I just do see what there would be to radiate. I am scared of radiation as a co-workers sister is dealing with the after math and it didn't go well for her. What do you guys think?
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Doughboy, I think that everyone is different and therefore will respond differently to radiation, just like chemo. As to rads, I'll be having rads after chemo as well for probably 55 treatments. At least that is what my RO was thinking before I started chemo. I currently have No Evidence of Disease and it's believe we removed it all with surgery but I am still doing radiation to kill any possible rogue cancer cells.
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doughboy - a big meta analysis came out in march this year showing the benefits of radiation with 1-3 involved lymph nodes. The benefits are something like 30% recurrence reduction. Benefit is still the csame with chemo. I too was hoping to escape rads but the data is pretty clear.
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cmp, Yes, my MO recommends using tea tree oil on toenails and fingernails. I'm much better about using it on my toenails as I had two affected by the AC alone and Taxol is much harsher to nails than AC. You can buy it in CVS or any drugstore, but it's hard to fiind & you'll have to ask where it's located. Buy only pure 100% tea tree oil - it should cost about $10. I put it on a Q-tip or cotton ball and rub over each nail twice a day.Doughboy, I agree with Sinsin, that every one is different, but even though no cancer was found in my 2 sentinel nodes, rads are recommended for my triple negative bc which is very aggressive. Just like SEs from chemo, SEs from rads vary widely from minimal to severe. My thought is to do all that is recommended to feel that you've done everything you can to prevent the beast from recurring.
Paula
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I went in for chemo #9 today (taxol/carbo) and all my bloodwork was low, so low that I had to skip today's infusion. They had warned me previously that it's very common, I was just so surprised because I feel fine. Last week I had a transfusion, was so tired I couldnt go to work and my hgb was 8.3 I felt so much better this week, went to work, and found out today that the Hgb was down to 8.1 even after the transfusion! Everything else is low, so I am hoping it all comes up by Thursday so I dont fall too far behind. MO also mentioned having me get neupogen shots if the WBC is still low next week.
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I swear I am psychosomatic lately!!!!! I read about facial neuropathy and my lips started to tingle. I read about some people feeling like there legs are heavy and now mine are!!!!!! I have to stop reading lol!
Megomendy that happened to me too. And I was just as shocked. With weekly taxol alone it's rare. I had a neutropenic fever but felt fine. and my WBC was 0.8. They put me in the hospital for 48 hrs on isolation, they cultured everything and I got neupogen, antibiotics to prevent an infection, some IV fluid. That was after taxol #3. I just had #9 today and it hasn't happened since.
This is really a weekly taxol question but I figured I'd ask it here since I "know" you guys and most if not all of you had surgery already. My kids are 5 and 7 and they pretty much know everything, at a level they understand. We told them I have breast cancer and there are bad cells taking over the good ones and the medicine I get kills the bad cells. Losing my hair, feeling sick and tired are all ways to know the medicine is working. They helped me make a blanket to bring to treatments and they help me pack my chemo bag every tine I go. We are at a complete loss as to how to explain the surgery, especially to my daughter (the 5 yo) since she will have boobs one day. I will be having a BMX. if any one has kids around their age can you share your discussion with them. If you don't want to do it on the board please PM me. TY Iin advance!!!
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Oh wow, Jules and Megomindy, sorry it's been rough on you and your counts! Sucks to miss an infusion when you just want to be done.
Jules, I have a 5yr old son and 2yr old daughter. I didn't tell my son a lot in details but just enough for him to not be shocked or scared and to answer his curiosity. I told him that Momma was sick and the doctors were going to try and cut the sickness out. When I came home after surgery he asked about the tubes and pain bag attached to me and I told him what they were and for. And one day out of the blue he asked to see my scar and I let him. He found it cool. LOL And he and his sister both know that Momma has to go to the hospital to get medicine to help me get better. Also, he understands that eventually Momma will get a new breast or as he puts it, "a new one." LOL
But basically, you want to just answer their questions as simply as possible. They don't need details per say as they just want an answer and as long as you answer them, they're happy.
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Jules- I have a 3 year old. I told her my "boobies" were sick and the doctor had to cut them off to fix mommy and then I would get new ones. She was okay with that. She looked at them after and it was helpful for her to see the reason she couldn't jump on me or I couldn't pick her up for a few weeks. Once we knew I had to have chemo we found the book Mommy and the polka dot boo-boo helpful. It addressed her biggest concern, my hair, but doesn't scare them with details toddlers don't think off automatically. Simple is good. Let them ask. When I got home she thought the drains were juice bottles!
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Sinsin, thank you. We agree that answering there questions as they come is best. We weren't sure how to start to explain the surgery, I like what you said. My son asked me what would have happened if they didn't find the cancer. That through me a little but I told him that's why we go for well check ups. Then I asked what he thought and he didn't have an answer. We also explained that they can't get it from me or give it to their friends. They don't know what the worst case scenario is. My ultimate fear is that they tell a friend who has had a relative that has passed from cancer. But we will cross that bridge if it comes!! The social worker at my treatment center gave us a great book it's called In Mommies Garden it's explains the cancer is like weeds in a garden and the chemicals that kill the weeds sometimes makes the petals of the flowers fall out. I work nights (only days during treatments) so they know what it's like to not have mommy sleep at home.
Thanks for your input. My surgery is not until 8/11 but I'm a planner. Not a good combo with BC.
Hugs - jules
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Clarrn that juice bottle comment is hysterical!!!!!
My son, the 7yo is very inquisitive and very sensitive to my moods. They week I found out and had a million appts and tests he knew something was up. A child psychologist I know was the one who strongly suggested naming it properly. I was reluctant but did. My son already learned about cells in school so that's why we explained it in those terms. My daughter kind of just came along for the ride. We preferred she hear it from us and not my son. She didn't ask much but loved making the blanket and loves helping me pack up to go for treatments. She also likes to tuck me in when I am laying down. My type of BC was painful when it presented so she also always asks which side my booboo is on and she will move to the other side. So she gets it in her own precious way. It's the whole cutting body parts off that seems extreme for children. But in all honesty they have been handling this better that me and my husband!!! They love that I'm bald and want their friends to see...lol! When I was in the hospital with neutropenia, my son's teacher told me he was fine. Wasn't sure whether to be insulted or relieved!!!
Thank you for your input!
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Jules, my son and husband both voluntarily shaved their heads and surprised me. My son wanted to match momma. LOL My daughter gets it more than I thought she would at the age of 2. She points to my left side and goes "Momma's booboo! Momma want boo boo bandaid?" LOL And sometimes she'll cup my face so tenderly in her two little small hands and say "Momma get better. I love you Momma." And she thinks my fuzzed head is pretty cool. She'll rub my head sometimes as if I were a cueball. LOL I have to get g-shots for my WBC and I take my little monsters with me. I have explained to them that I have to get a shot to help Momma feel better. It's actually a great way of showing them to not be afraid when they have to get their inocculations because there's Momma getting a shot and not crying or afraid. Yesterday I was going to my GI doc and she is right by the hospital where I get my infusions and shots and my daughter piped up from the backseat as we got closer "Momma, get shot so Momma can feel better?" She recognized where we were going and thought I was getting my shot again. LOL I was impressed. But my monsters have adjusted really well to this and I answer their questions as they come. So far it's worked wonderfully and neither are afraid nor does it seem to affect their happiness. I wish you much luck in your conversations with your kids. It's not easy, not any of this but we do have this great support group and that helps tremendously!
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Sinsin that is beautiful!!! My hubby shaved his head too. And my son got his yearly Mohawk so he said he did it half way. Yes we do have a great support system!!!! Thank you so much for sharing!
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A recent SE that's developed is a clicking sound on one side of my jaw. Looked it up and it seems to be TMJ. My mouth has been affected ever since the AC. At the end of that, I started using Miracle Mouthwash til it cleared and have used it again recently for thrush on Taxol. I haven't been able to floss since the beginning of chemo, otherwise bleeding gums. I'm using prescription toothpaste without glycerin and homemade salt & baking soda rinse. Brush my teeth & gargle religiously during the day. Don't know what more I can do! Has anyone developed the jaw click on Taxol?
Am concerned this may prevent me from getting Zometa infusions post chemo, as there's a very small chance of getting necrosis of the jaw from that. Have a dental appt next week to get a dental OK that all is well before MO will go with Zometa. Zometa is supposed to add an additional 3% against recurrence. Thanks!
Paula
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Paula, sorry about the TMJ! I swear, this chemo stuff just finds new ways to torture us! Be sure to tell your oncologist and talk to then about it!
Be careful at the dentist. You're susceptible to getting a gum disease and you don't want any bacterial illness right now with your immune system weakened. Otherwise, you have a grater chance of developing a bacterial infection in the blood which is deadly. I only say it as it's rare but I have had 2 friends lose loved ones this way this year. One had dental work done and I think a surgery back to back. Again, super rare but just be careful!
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Sinsin, This dental visit is just for a look-see to determine what kind of shape my mouth is in and to make certain there are no looming issues like a crown or root canal. Until chemo I had perfect dental health - no cavities in over 20 years, no crowns or root canals.0 -
Yeah, I hear you. I got 16 cavities thanks to fissures in my teeth that my dad and stepmom never took me to have filled so when I became an adult, they had to be drilled. When I was young they were pre-cavities and could have been prevented from becoming cavities. But since then I have had great teeth and now with chemo, I have bleeding gums, big time. Really annoying. Hope you get a clean bill of dental health!
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Infusion #13 and Taxol #10!
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Looking to jump into a group to find support during this fascinating journey. I have been reading various blogs for hours on end since my diagnosis just over 2 months ago, but just haven't found a discussion group that I felt right about jumping into. Since I have most recently been incessantly googling "side effects with weekly taxol" for the past 2 weeks (and after 2 months I realized I just have to start somewhere), I thought I'd start here. I'm a 34 year old working mother of 4 young children (5, 3, and twins that turned 1 last weekend) and my world was rocked april 29 when I was diagnosed with stage 3 IDC. I'm starting with neoadjuvant chemo since my very large tumor abuts the chest wall and the surgeon wants to ensure negative margins during mastectomy. Anyway, I just finished dose dense AC and starting weekly taxol tomorrow. Although this gives me much relief because I felt so debilitated after the last AC treatment, I did seek some comfort in the predictable pattern of side effects that developed as the days after treatment ensued. I'm feeling a bit nervous about the unknown. I'm wondering what each day post infusion will bring me and how this will effect my work and home life (both of which I love). Since there's no stopping now, my only choice is to go tomorrow and allow this chapter to unfold. Thank you all for allowing me to be a part of this group and to learn from all of your experiences.
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MDnowPatient - You are welcome here. It sounds as if you will be a gift to our support and musings and I think you will benefit from the same.
I don't know how people who work and have young kids do this. I am nearly 70 and retired. I am blessed by having a schedule that is totally free to accommodate the capricious moments this disease and these treatments surprise me with.
One of the posters on a board I visit is a single mother who works full-time and has older kids. She has fought this battle for several years and has had 39 Taxol treatments and minimal side effects (SE's) It can be done and with your attitude I think you will do it .
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Welcome MD,
I struggled with my DD AC and happily report that Taxol has so far been more manageable. I have a 3 year old and with AC I had to send her to dayhome for 3 days a week to manage, now I keep her full time. I know we all react differently but it does seem like those who had difficulty with AC find Taxol easier. No nausea vs 8-9 days of it on AC even on Emend, zofran, granesitron, stemetil, maxeran, ativan, dex, etc. I feel like I got part of my life back! Hope you do well!
This is a great place for support and advice. As an ICU and oncology nurse, I too, understand what it's like to suddenly be on the other side of the medical world, and know that I will be better for it when I get to go back to work! It has also been quite an eye opener when I had doctors I respect tell me that my axilla pain was just stress, that I didn't need a mammogram because the ultrasound didn't show anything, that PICC lines can't get DVTs in 2 days, and that lymphedema doesn't happen with sentinel node bx. Unfortunately, my intuition has been correct on all accounts. I still maintain that I have had excellent care and that these are rare instances, and perhaps some false reassurance, but I would much rather hear, "I'm 99% sure it's not that but let's check it out if it doesn't go away", instead of automatically discounted. Especially when it my job to notice small changes in other people, nevermind when I can actually feel it myself. Yikes, rant out of nowhere....lol. All that to say that I will definitely listen more carefully to my patients when I go back to work, even when I think that it's incredibly unlikely.
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clarrn,
I have significantly increased the number of diagnostic mammos and ultrasounds I've been ordering especially on young people. The other platform I have started to take (and will hopefully take further at some point) is really pushing self breast exams in women under 40 who are too young for mammos. There is no other way to catch a breast cancer in women under 40 (meaning not old enough to begin routine mammo screening) besides feeling it! Having seen the extensive abnormalities on the mammo I had several months ago, (which prior to that there was no indication for screening mammos in a 34 yo with no family history), I believe it would've been picked up way earlier. The USPSTF several years ago made a statement saying there is no evidence of improved mortality with doing monthly self breast exams and since I usually value those recommendations, I got away from making sure I discuss it with every female patient (however, I always do clinical breast exams of course). This data does not specifically comment on the difference in mortality in young women <40 not yet getting yearly mammos doing SBEs (and there may be data out there but I haven't specifically looked-may be a good study to do if not done already). So, since I am trying to find the lessons I am meant to learn throughout this process (both to improve myself as a person and physician), I have started discussing and encouraging self breast exams in women under 40. I hope to take this platform a little further than my office at some point in the future and maybe I can help even one more young woman find a cancer earlier than they would otherwise (and not stage 3 like me). Also, just like you clarrn, while I do firmly believe in evidence based medicine, it is clearer to me now more then ever, that diseases don't always follow the rules and if I can be an exception, so can the patient sitting before me. Common things are common, but you NEVER know. I feel I have grown so much in both my personal and professional lives in the past 2 months due to this nasty disease I am faced with (I better freakin' learn something for having to endure AC). Ok, off to work and then my first taxol. Whooohoo! Bring it!
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Oh, one more thing I learned….I'm wearing jeans to work today!
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MD - Welcome!! My heart goes out to you and every woman on this thread - especially with your little ones. You sound like an excellent physician - your patients are lucky to have you as their doc. Although many have serious side effects from chemo, not everyone does. I'm one of the "lucky" ones in that my SEs from AC were not that bad (mostly lessened energy and badly affected taste buds). I'm having the 10th of 12 weekly Taxol infusions this morning, and expect to do well as I have with all others. If you can manage it, daily exercise has been my godsend - my MO agrees that this has helped considerably with tolerating the chemo. On Taxol - No nausea (but didn't have it with AC either), taste buds better if still not great, energy little less than when I started it, but still exercise lots, no signs of neuropathy at this point. I'm icing my hands and feet with 2 sets of Elastogel gloves and booties about 10 minutes before & after, and during Taxol. You can make homemade ones, but they are more cumbersome. Keeping you in my thoughts for a side effect free Taxol.Paula
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