Weekly Taxol group
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Hi, I had neuropathy in hands, feet and random places (thigh, shin) and really was worried. My MO reduced the dose 20% and now I still get a little on the bottom of my feet but it does come & go. My nurse also told me this would not delay Taxol. My symptoms are numbness, no pain.
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I started to have some mild sore under my tongue too this week, just little discomfort but not bad. I can still eat and stuff. I've been trying to have Dr to reduce my steroid because I don't have any nausea even with AC. But OC refused to lower or remove. So how did some doctors reduced the dosage and even let you skip all?
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Hi all, I am stage 1, 1.1cm IDC, ER/PR +, Her 2-, negative neg nodes, grade 3. 39 year old. Just found out today from my MO I have a high oncotype score of 37! With tamoxifen, recurrence rate is 27%! Recommended hardcore chemo - FEC or AC + T. I'm deciding which one to go for. Looks to me everyone here is on AcT, how is everyone taking it? FEC I would only need to make 9 visits in the span of 18 weeks. Vs. Ac t with a total of 4+12 visits.....how did you guys find it? It's a very bad day for me, not only the high do score, but, I was hoping worse case scenario TC 4 rounds, but now can be up to 16 with only a reduction recurrence rate of 3-5%. Can someone please convince me it's worthit? Can't stop crying about this.....plus is there an IV thing that needs to be put into the body for months? Thank you all!
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Scarysadday, I recommend you get a second opinion. It can't hurt. I'm no doctor, but it seems odd that your recurrence rate is that high when you are a stage 1. I did AC+T. The worst problem I had with AC was constipation. I was doing fine with Paclitaxel, and then I got hives and a taxane rash. But I am not the norm.
Houston, I also,find it odd that your doctor refuses to reduce or drop your steroid for you. Probably an over abundance of caution on his part, but you should have some say in it.
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Scarysadday, Sorry you have to have chemo with a grade 3 it is almost a given. I'm not sure what FEC is, I had AC plus T. I had neoadjuvant because I had lymph node involvement and chemo was in the cards no matter oncotype. I am glad I did as I had a complete pathologic response, so I knew the chemo worked even on the nodes. It allowed me to avoid a full axillary lymph node dissection and reduce the risk of lymphodema. I won't tell you it's a piece of cake but it's not as bad as you imagine. If you decide to go with chemo, you can do it. You shouldn't have nausea with todays drugs. In fact a lot of women gain weight, I did it was very disappointing. The overriding SE I had was fatigue and the worse was loosing my hair. I got a wig close to my hair buy one before you lose it. Most people did not know I was wearing a wig. 4 months post chemo, I had enough hair to style a bit and color, so I dumped the wig and wore hats to supplement the fact that it was super short. Some women who had taxotere ended up with permanent hair lose, you should be aware of that but not with taxol. You will get a port which is not big deal and it saves your veins. This site has a lot of articles on risk reduction with chemo, rads, and tamoxifen. You should look at them. I thought recurrence rate with surgery, chemo, rads, and tamoxifen were closer to 10 to 20%. Good luck with your decision, I can only say that I would have chosen chemo even without lymph node involvement. Hope this helps, Mary-Jo
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Thank you lovemyvizla and MJS1266 for your response. L - my recurrence rate came from the oncotype dx report, as the score is high, which equates to high recurrence rate? What surprised me is that even with chemo, the MO said it can only reduce 3-5%. Am I am not even sure if it's reduction from 27% or 3 to 5% of 27% which is only1% or so......anybody know? Or can provide some guidance?
MJS1266- I already got a wig way back....I still think I look weird unless I wear a hat with it...I can't imagine without it though..I can't have my 2 little girls nor my husband see me bald. I have not shown 'anyone' my mastactomy scare, since my surgery in May, and I try avoid looking at it myself....can I ask if you have gained a lot of weight? Is it even possible to loose weight gained from steroids? Thank you all.
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Houston, my onc reduced my Taxol b/c of neuropathy, but would not budge on steroids or benedryl.
Scarysaddy, I'm finishing up with AC/T. The AC was harder for me than the Taxol has been, but you do what you need to do to reduce your risk as much as possible. But by all means get a second opinion. My SEs from AC were mainly fatigue (sleep) and constipation (managed with Senna-S). The nausea meds worked very well as long as I kept taking them on schedule. Oh yeah, I lost my hair of course. Also got a wig but I sometimes go out all bald b/c it's more comfortable.
I also think it's the grade 3 (aggressive) tumor that's the winning chemo ticket for you. For me it was 2 + nodes. I believe the high oncotype score indicates your tumor is more likely to be responsive to chemo--someone correct me if I'm wrong--so that's a good thing. I wish you the best, and sorry you have to be here.
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scarysadday, Everything is so stressful and not always clear. Only one friend ever saw me bald because she helped me shower after surgery. I didn't get an oncodx score because there was no cancer left when I had surgery which is a good thing. Did the recurrence rate on the onco test take into account hormonal therapy? I just went and looked at a few articles and for lumpectomy, radiation, chemo, and hormonal therapy recurrence rates based on studies were at the highest 14% for ER/PR negative and HER Positive. You might ask MO to clarify the report and risk reduction. Also, the more aggressive the cancer i.e. grade three the better the response to chemo. In your case, the chemo is just to clean up any stray cells that may be left. I didn't gain weight during AC, but got a cold while on T that never really went away, and it was January and I became a real couch potato. I gained about 15 lbs. Prior to that I walked about 2 miles three times a week. After getting the cold in a public place because someone sneezed on me (gross), I was too paranoid to go to the gym. Since recovering from Rads, I have been dieting and working out a lot and have lost over 50 lbs. So weight gain is not a given and weight loss is possible.
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My weight stayed the same on AC, but because I didn't have steroids for taxol and because I kinda lost my appetite, I've lost 8 pounds. I never had any nausea.
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Houston - The purpose of the steroid and benadryl is to prevent anaphylactic shock from a component in Taxol. My dosage for both was reduced because I couldn't function at all until day 6. Benadryl was reduced from 25 mg to 12.5 mg, steroid was reduced from 10 mg to 8 mg, and reactine was added. I still get knocked out from the benadryl, but I can recover faster. I would not drop the pre-meds. I do not want to risk anaphylactic shock. My Taxol dose has not been reduced.
Scarysadday - I lost weight from appetite loss during AC, but ate ice cream when appetite returned to gain some back. After Taxol #9, I've gained about 5 lbs because I can't quit the ice cream! I'm still lower than when chemo started. My side effects have been hair loss, fatigue, and just now, some neuropathy. I haven't been sick, no nausea, no vomiting.
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I had 12 taxol treatment after my a/c. My last chemo was 2/5/2016. My nails started to turn after week six and by week 12, 8 of my fingernails were black/brown and lifted and my big toe nails turned strange shades. I never lost any of my nails I just kept them short and my finger nails are now almost grown out. The thumbs may require another month. My toe nails are growing super slow, so no sandals for me this summer! I had some neuropathy by week 11, but it went away 2 weeks after chemo.
Remember: Liquids, stretching, rest, and you have to eat.
Good luck everyone! You can get through this!
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scarysadday - Did you have surgery already because that's when Dr. can give you oncotype score. I don't have one and my OC said I'm not surgery I'm doing chemo first. I'm guessing you had a lumpectomy with stage 1 so that's a good thing. if OC score is high then that warrants a chemo and radiation. OC score is come from the testing of your tissue from surgery so it doesn't change just getting another opinion from Dr. My experience tells me that even though Taxol is longer it actually is better and less side effects. The more dense dose the chemo the worse side effects and more damage for your body. I feel almost normal with Taxol I have more energy than AC and absolutely no nausea feelings. The only thing is body aches on the third and fourth day but it went away on the fifth taxol when my WBC went up! Interesting. I even went back to work after the fifth Taxol. I couldn't do that with AC. I think it all have to do with exercise and nutrition. The better you eat and more you exercise the better you feel with less SE.😊
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Thank you all for sharing your experience.
Houston - yes I'd done my surgery, mastactomy, though my oncologist is the one who presented the dx report to me and didn't suggest any other 'views'. She suggested to put in the PICC for at least the AC round, which really bothered me....I want to have it opted out, I hate to have an 'object' stay in my body...hated the drain after mx. Did anyone used veins only (with only one good 'arm' for the entire 16 rounds? And did it really killed your veins?
Amie- did u iced your nails during chemo? I plan to bring ice packs during infusion ....has anybody done that?
I went to bed super early last night, just a horrible day, wanted to end it sooner.....also emotionally drained made me super tired....sigh....now another day...one day closer to chemo 😢
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No delays in treatment here, all 12 (Taxol) will be done consecutively. Blood looked great throughout treatment for me, I worked out a bunch, I heard that perhaps helps with low counts? ONE MORE to go! I will cry tears of joy on Monday, hang in there ladies you got this!
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Hi Scaryadday, a PICC or port is to make it easier on your veins and it is easier for you also, not to have to go through techs finding a vein every time. Also, it eliminates the possible of chemo leaking into surrounding tissue, which you don't want for sure. I have a port, and after I got used to it I didn't really notice it anymore. Don't know about PICC.
You can and will get through this. If you need help with anxiety--many of us do--ask your MO if you can get an rx for something (Ativan). Big help for me for my mind is churning.
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Numb, RubySlips re: delays , white cells, mouth sores:
Re: delays for side effects: I had all sorts of minor problems, including lots of redness, rash, flushing, mouth sores, finger numbness...but none of those caused delays or dose reduction...Had to take more Benadryl to control rashes etc. But, when my rare side effect of hand/foot syndrome developed (around week 5-6) and got bad, my dose was reduced by 10% , but chemo went on.
Re: white cells: My white cells went below "normal" only once. and then came back to normal the next week and stayed there for the following week--my final weekly Taxol before starting tri-weekly Herceptin only. So it can happen--they can change.
Like all of you, I didn't want a delay. The week they went down, I have to admit I had a very bad "eating" week. It was my son's birthday and we had a large, delicious, gluten-free (I require this) . buttery birthday cake around the house and I ate large pieces -very, very large....think 4-5 inch wedges..:) - two days in a row. (They gave me a headache, by the way, as I don't eat much sugar at all--I strive for none but succumb to chocolate and a cookie on occasion.) I also ate more refined carbs that week--my son likes pasta and was staying with us for 3 days. I have no clue if this mattered at all. But after that low test, I tried by best to eat perfectly: tons of fresh vegetables, some fruit, some good proteins (chicken, fish, eggs), lots of water.
Re: mouth sores: The mucos membranes are fast growing cells and get hit hard by chemo, and some of us are more sensitive. I got mouth sores right off the bat. But, once I started using salt water/baking soda combination they healed quickly. Mine were always under my tongue, like Numb's. Once my dose was reduced, I haven't had them again. Some say to use the salt/baking soda combo as a preventative but I didn't do that to start.
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ZOZIANA - that's interesting, thanks for that info. I have been using mouth washes but I think I will start to do the salt and water, baking soda one from now on and see how that works.
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Scarrysaddy: I also ended up with chemo, when I thought I probably didn't have to have it. And boy, am I glad I did. I am grateful, to be frank. And I wish I could have qualified in guidelines for even an additional chemo drug, but I didn't--I missed it by .1 cm......With fast growing cancer (and Grade 3 is), or Her2 cancer (by definition spreads faster), it seems like standard practice to have chemo.
I was similar to you in that at first, after mastectomy, I thought I would need no chemo at all--maybe just hormone therapy. I had a pretty small tumor--1.9 cm, and no lymph node involvement, and they had 1 mm clearance from my chest wall. Not a lot but apparently a large amount in cancer.
My onco actually came back low. Initially my biopsy (8 samples) was tested as Her2 negative (it was 1+ on the IHC test for Her2.) The Onco test came back Her2 negative as well. (Both IHC and Onco use different testing methods for the Her2 protein.) I had asked for, and eventually it came in as Her2 positive, the best, definitive test for Her2, which is the FISH test. And that was positive. So, on a Friday night at 6 pm I found out I had to start chemo within 7 days. There are reasons for that based on recurrence rates with delay, etc.
I personally wasn't that shocked on the Friday night I found out. After all, I'm the one who asked for the other test for Her2. But my family was shocked--they just didn't expect it after everything else. But we all got used to it.
Regarding how well folks handle chemo: I think some of it is luck, but some you can prepare for a bit, like icing, using mouthwash to prevent mouth sores, etc. I just finished 12 weeks of Taxol (pacitaxil) and Herceptin, and am on to 9 months of Herceptin only, and Femara (AI drug) and zoledronic acid (osteopenia). I don't think being fit or exercising or anything else really helps how you react to Taxol, to be frank. I think it is just your body and genetic makeup. I say that because I was --per my own assessment but also that of my team of doctors-- about the "healthiest" cancer patient they typically see. Though I'm in my fifties, I have exercised literally all my life, was swimming 3 times a week for an hour of moderate to high speed exercise, and I walked hills for 5 miles 2-3 other times in the week, and then walked in my neighborhood to shops, dinner, etc. I have avoided most sugar for at least 10 years, have never been overweight, didn't drink too much, never smoked, etc. etc. I looked like the picture of health and strength. But, Taxol hit me hard and I got every "small" side effect and a rare and debilitating big one that literally no doctor in my major large medical center has ever seen with this drug (but there are a few reports in the med literature about it and it can happen.)
Good luck going forward. You will do fine, because we are strong and we do what we must do to fight this cancer and live our lives!
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Yay! Zoziana! I'm happy to hear you are done with # 12.
Scarrysaddy, I wasn't too fond of the idea of a port, until I got one. I am so glad I got one! You can ask your surgeon to put it in vs a radiologist. This way you can be put under anesthesia. My surgeon also ordered a silicone port that is lighter than the metal ports. I am very impressed with how easy it makes blood draws and transfusions.
Bird
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My MO sent me to the folks who do dialysis to get my port. She said they do the most and are the best--and they were. I was "out" but for a very short time. Mine is also plastic--it's called a "digni-port" and can also be used to inject dye for scans. Happy with mine as it saves me many sticks.
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Day 2 since the bomb of chemo news, taking it abit better today, thanks to all of you for sharing your thoughts with me, knowing I am not alone and many of you got through it, somehow, virtually gave me more strength. Thank you. I think I will go ahead with the chemo, and will likely have the PICC put in me....I won't like it, but I know it's the better option. As for the high oncotype score and recurrence rate, I will try to think of it as just a number....I should be fortunate enough to be able to be qualify for oncotype test....the figure is just an indicator that chemo will benefit me. Screw that recurrence rate, I will worry about that if iHappens, not going let it run my life....because that is what the cancer want..no way they are getting their way.....!
Side question, everyone that's doing chemo must go in the day before chemo infusion for bloodwork? Even for the weekly taxol? Wouldn't that mean u gotta visit the hospital or clinic twice a week? That's a lot of visits....
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Hi,
I go once a week (Taxol). First they draw blood and we wait. If all is OK, they give me the 3 premeds: steroids, benedryl and something to prevent heartburn. These are all to prevent allergy problems and side effects. Then I get the Taxol. If there are no hold ups I'm there for 2.5 hours. Other centers may do it differently. I'm glad you are feeling better.
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My experience is similar. See MO (every few visits), blood draw, get the okay, Herceptin 30 minutes, Benadryl 30 minutes, Dexamethasone (steroid) and Ranitidine (Zantac) 20 minutes, and Taxol 60 minutes. Today I met with the MO at 10:00 and left at 1:45 Two down! I ice my hands and feet (Elastogel gloves and mitts), which adds 15 minutes after Taxol where I just get the saline.
Bird
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Yep, get my bloods done, then see MO, then an antihistamine (loratidine) and a steroid, thirty minute wait, then Taxol. I'm usually at the clinic around three hours, but do duck next door for a coffee between the blood draw and seeing the doctor.
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RUBYSLIPS - Got my 7th Taxol today. Now my neutrophils were 2.8, (3.8 last week) but when I checked with the nurse she said that it wasn't the Neutrophils that have to be over 1 but the White Cell Count and that the neutrophils are only part of the WCC. My WCC was 4.3, being 4.6 last week, so that's not too bad.
Got a Dr to look at my tongue and he found it hard to see anything but I know there is a sore spot there so he gave me prescription for Orabase and just said that it takes time to heal but that it doesn't mean it will disimprove with each Taxol. The nurse said it was important to keep my mouth moist, i.e. drink water, as when the mouth gets dry that is when the germs set in. I had let up on drinking too much water, so I guess I was developing bad habits.
Best of luck with your 7th round.
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Scarysadday, my experience is very similar to what the girls are describing. Labs first, wait for an hour, pre meds and then Taxol.
The big difference, and I've been meaning to post this because I know a lot of ladies don't like the Benadryl, is they give me a different antihistamine in pill form. After the first infusion I told her I didn't like how it made me feel (went STRAIGHT to my head and knocked me out) so she just put "not tolerated" on the chart and gave me the alternative pill next time. It's AWESOME! No drowsiness. No SE at all. I asked why they don't give it automatically then and she said Benadryl is much cheaper so insurance won't cover the other unless the patient can't tolerate Benadryl for some reason. I'll get the name and let you ladies know, if anyone is interested.
Numb, that's good news! I'll definitely have to get more specific with my questions to the RN on Monday. My numbers are all a lot lower than yours, but my WBC is 2.31! Steadily declining but way higher than the neutrophils at 1.28, and much more comfortably higher than 1
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ZOZIANA - Used the salt/baking soda mouth wash last night and could hardly see the ulcer this morning. Thanks a mil for that tip.
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I finished with 12 Taxols this Tuesday.Have a lot of swelling in legs last 2 weeks. One leg is much bigger than other :(I was send yesterday to do eco and liver sonogram. It seems fine. I also was prescribed diaretic pills that don't really help. it doesn't make me to go to to the bathroom more:( I was active through my 12 weeks of Taxol...all the time doing walking , some running and gym every day.today was the first day I couldn't make myself get up early and go to gym...... Also whole day today I have kind of shortness of breath ...is like I can't inhale fully air...maybe bcs it's 98F heat and so humid...
Any suggestions about getting rid of water retention from steroids, I believe this is what it is. Anyone had similar experience? How long does it take for water to go away?
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viktoryak.......Please don't get discouraged. I too seemed to go through my 12 taxols fine until the last 2-3 treatments when I started retaining fluids. When all was said and done I had retained over 60lbs of fluids. Went through every test imaginable, even with a vascular surgeon and it all pointed to my chemo. At the beginning I was on 40 mg of Lasix and was still retaining more fluid. It wasn't until I was about 3 weeks out from my last treatment (Jan 11) and being on 80 mg of Lasix that I started to see a difference. At one point I actually lost 22 lbs in one week. Just to give you a heads up (and this was just me, it may not happen to you) when I lost all of that in a week it messed up the electrolytes in my blood. Luckily the vascular surgeon had mentioned that possibility so at least I knew what was going on when that happened. Are you seeing a lymphedemist to massage your legs and get the fluid up to your upper body to help it be absorbed by your vascular system? I see one now twice a week but she said they should have sent me when I still had most of the excess fluid as it's easier to get it out of your system while there is lots of fluid to help it move. I know just what you're going through, but it took me quite a while, and as I mentioned I'm still seeing the lymphedemist who's working on what's left (some in my legs and the breast that was operated on) to hopefully get rid of all of it. My legs while pretty much normal in size now are still very firm and shiny, skins still tight. I hope this helps a little, I'm no expert by any means, but this is based on my experience which is still ongoing at this point. Best of luck to you, I'm sure you'll be fine!!
marg52
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scarysadday,
As ladies have noted lab work is usually done day of treatment. When you have AC, you may come in for a Neulasta shot, I think two days after. Neulasta helps with blood cell counts. It's super expensive, ask if they have patient assistance or they will probably offer it. Then it is only a $25 or so co-pay. For AC expect about 4 hours. For Taxol, except for the first one probably 2 to 3 hours. Best, MJS
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