Weekly Taxol group
Comments
-
Seq24,
Well I did #10 today and I just feel tired from the Benadryl and some pain in my back and legs. This time I felt kinda funny when the Taxol was started but, I said the heck with this stuff, I'm not a quitter nor can this keep me down. I'm doing all I can for the mouth sore, even if I have to drink my meals the next 2 weeks. I have to stick to the treatment and go to 12. My MO said she will take it week by week but she would like me to have the best chance of not having recurrence. To me that means, get it done. So that's what I will do. Whatever doesn't kill you makes you stronger right? And i will live and continue to enjoy my life. I will def. Try the tonic water and see if that helps, thank you. Congrats on your last one this week! Whoohoo! What an accomplishment. Are you going to celebrate? My MO asked me that and I said as soon as I can eat sushi, I'm doing it! She looked at me and said "May people go on trips and stuff, its a huge accomplishment" I looked at her and said " yeah a guess it is" lol. So I'm going on a girls trip in early May to celebrate my completion of everything and if and trying to slip in a trip to Anchorage for the Iditarodin early March!!! By the way not sure why my dx doesn't show up on here. I'm close to yours dx 6/28/16, IDC right 2cm, stage 2, 3/11 nodes. I had surgery 7/6/16 and again 8/10/16 for negative margins and ALND. 😉.
May
0 -
hormone positive and h2 nwgative
0 -
I see a lot of you ladies had surgery first...how long did it take for you to recuperate from surgery?
Thanx:)
0 -
does anyone else feel like they no longer have any energy? I had the ninth infusion last Friday and still feel like a lump on a log. I don't even have a desire to do anything. So not me 😢
0 -
I'm doing taxol every other week after I finish ac. Can I ask what side effects were most common
0 -
wow...thanx KB.
0 -
scaredashell07--I hope you're making it through AC well. It's definitely no fun.
As far as the taxol, I can share my experience but do not want to speak for others. I will be having my 12th and last Taxol infusion on Friday of this week. Compared to the AC, Taxol has been very easy for me. My main complaint is on days 3 and 4 I do get some leg, hip and back pain. Just kind of a terrible achy feeling. Like just before we get the flu or something. I've had some fatigue, but again, nothing compared to the AC. My oncologist said that the most common side effects are neuropathy (60% of people get it she said), nail changes, mouth sores, muscle/joint aches and pains and fatigue. There is a website, Chemocare.com, that my oncologist's office uses to give drug information to patients. It is very informative and you can look up any and every drug that is related to cancer on there. I have referred to it for every chemo med and prescription I have had throughout this journey.
0 -
Taxol for me has been very much better to handle than A/C....the s/e's I have encountered is extreme fatigue...a little neuropathy in my fingers and toes...my nails have turned completely black...and my nails are very tender...I would also get sharp pains that would move from my legs to my thighs..but I am done with my Taxol Run Thank God!!
@Diana...I have no energy..I have to drink a redbull or a kickstart to get moving while I am work..lol
0 -
Hello ladies!
Does anyone have experience with Hand-Foot Syndrome??
I am new here. I started Taxol (12 weeks) on Tuesday. Just finished 8 weeks (4 treatments) on A/C, which was really hard for me. I'm relieved that Taxol doesn't seem to have the same miserable side effects as A/C! I can do much more a day after Taxol, I was in bed and very uncomfortable while on A/C.
What I AM experiencing for side effects this week seems to be Hand-Foot Syndrome. I thought it was dry skin at first the night of my treatment. Then the next day my feet were so sore it hurt to walk. My finger tips are red and sore. Used lots of lotion, which didn't change anything. I thought maybe neuropathy, since that's a common side effect later on with Taxol, but that is supposed to start as tingling and numbness.
Called the dr. on call last night just in case it was something to be concerned about because my cheeks were bright red too. She said she thinks Hand-Foot Syndrome - when the chemo medication leaks out of capillaries in the hands and feet. Causes pain. She thought the red cheeks were from the steroids, not related.
Just heard back from the clinic and they want me to see my oncologist. Have an appointment for tomorrow morning.
I'd love to hear any feedback you may have in dealing with this sort of thing.
Thanks!!
0 -
NEChic- I soaked them in hot water with epsom salt. Really helped
0 -
Oasis2016
Have you tried acupuncture?
Rhonda
0 -
NewEnglandChic, the sole of my left foot turned bright red during AC, then the skin became so dry that it cracked in places. Applying Aquaphor at bedtime with a sock on to aid absorption helped me. The extreme dryness returned a second time as I've transitioned to Taxol. I introduced the Aquaphor right away & only developed one small crack. I'm now applying the Aquaphor to both feet most nights as a preventative. I feel lucky that my hand-foot syndrome is mild. More aggressive treatment may be required for others. Good luck!
Lyn
0 -
NEChic, I had pain on the soles of my feet and finger tips after the 4th AC. When I started Taxol the pain eased but now I have some numbness in toes and fingertips. MY MO said that AC typically causes foot and finger paint and Taxol typically causes numbness. She said they watch the numbness so that it won't become permanent. As others have mentioned, that is one of the considerations of whether to do 10 or 12 Taxol infusions. When I started chemo my plan called for 10 Taxols but my MO switched it to 12. I guess she could change that if the numbness gets worse.
I find Taxol easier than AC but I am still experiencing a brain fog (as I did with AC), or a disconnectedness that makes it hard for me to concentrate. I can't drive, for instance, and I've been posting less because writing posts takes more concentration than I have some days. I'm reading all of your posts, though, and I find your information so helpful.
Last week my MO decided to switch me to a port because my veins starting showing signs of stress. I had the port placement on Tuesday and they planned to use it Wednesday for my 3rd Taxol infusion but after 3 nurses made 5 attempts to access it they switched back to an IV. They said I had too much tissue swelling to access the port. Next Wednesday my surgeon will do the port access and after that the healing should be sufficient that it will go smoothly.
0 -
blessed-wait, no sushi during chemo? That's been about the only thing I've been enjoying? What did I miss?
Had #9 taxol yesterday along with my last Perjeta. Still doing my ok, just bad diarrhea continues off/on and neuropathy continues, but my bad onc Dr (which I'm switching soon) says unless I am 'dropping my keys or can't put on my earrings, than I'm fine.' Lol. I've been doing the Tonic water and only 50mg of B6 (because I had reactions to anything higher), which I think is helping to maintain. Want to start the glutamine too-but not sure on dose.
Layda-I did surgery first...which I guess isn't the norm when you are triple positive (I found out later). But at initial diagnosis I wasn't triple pos.
0 -
Seq...thinking of you lady...hope your final Taxol went well...Congrats!!!!!!!!!!
0 -
134 days in chemo, 30 pokes, 16 infusions, and approximately 56 hours in that chair I am happy to say I am DONE WITH CHEMO!!!
Have a new worry though. Long story short, I have to go in for a mammogram and ultrasound on Wednesday to have something checked that I have been noticing. Some weird dents and lines on the breast I had surgery on. No pain, redness or swelling and nothing can be felt to the touch. NP said it could be something called lymphatic tethering, but also hinted that these skin changes could be a sign of something much worse. Needless to say I am scared out of my mind anyway.
0 -
aww mannn Seq....chemo finish another problem arises...i am sorry...I hope its not worser like the NP thinks! I am going to have research lymphatic tethering b/c i have no idea what that is.
0 -
aterry, I'm sorry about your issues with the port. Sounds frustrating! I have a port, thank goodness because my veins are tiny. I'm sure I'd be dealing with something similar. I hope the swelling goes down so they can start accessing your port
0 -
Thank you for the responses to my post about Hand-Foot Syndrome! The Aquafor-type cream is helping, and a friend gave me some Udderly Smooth.
I saw the MO this morning (not mine, he was out of the office). The pain is there still, maybe a little less than yesterday, fingertips are less red, but tops of my hands are red and blotchy.
He gave me a prescription for Methylprednisolone (steroid), and Percocet for pain as needed (which I may not take if pain continues to subside).
I can't have another Taxol treatment until I see the MO again. He said they may have to change me from Taxol to something else. I was so relieved to be off of A/C and moving onto something with less side effects! I hope whatever they put me on is similar, I think there is one in the same family as Taxol he mentioned. We will see.
Dealing with bowel movement issues (one end of the spectrum to the other) and hemorrhoid pain on top of this stuff. So tough day!
I'm finding myself more sleepy a few days after Taxol. Is that normal?
Thanks again for sharing
0 -
Surgery was much easier than I'd anticipated (bilateral mastectomies and immediate one-step reconstruction). the pain was minimal, and only needed tylenol after the first day. You will be tired and need help. Sleeping on a recliner---I preferred the couch because I couldn't work the arm handle. A shower chair is great so you can wash your hair without lifting your arms. I rested my elbows on my knees and lowered my head to my hands. The drains are the worst part, but once they're out, it was a huge relief. Everything takes longer...getting dressed, etc. I hid the drains under bulky clothes and went out a couple of times because I was going stir crazy. Arm movements are limited, but not painful as long as you do what they tell you. Walking was a great stress reliever. It's been 5 weeks and I'm back to work, but still not sleeping on my back. Port next week and then chemo. Dreading that more. I wish you an easy procedure and quick recovery.
0 -
Hello ladies it appears that I'm going to join your group in one or two weeks. I will be doing taxol and cytoxan. I was originally told that I would not be doing chemo because my tumor was very small and I had no lymph node involvement. However my mammaprint came back high with the luminal B. Therefore I will be doing taxol with cytoxan one every three weeks x 4. I am very scared of chemo as I'm sure the rest of you were too can you tell me if it's going to be a rough ride?
Thank you,
Linda
0 -
Linda, you will find a lot of information about how other patients have reacted to chemo in these forums. I visit this one and I also visit a forum of patients who started in chemo in Nov 2016 (I started Nov 9th). I also visit the Triple Negative forum. The reactions and side effects vary quite a lot from person to person but you will find others who have experiences similar to yours and they can offer advice. I've been on a different chemo protocol than yours. I started with AC every other week for 4 rounds and I'm now on Taxol every week for a total of 12, 3 of which I've done. The Taxol is easier but I have some neuropathy in hands and feet and I get a brain fog, or disconnectedness that makes it hard for me to concentrate. I think that particular side effect is not so common on Taxol. When I started my medical oncologist said that most people do better than they expect to and I would say that has been true for me. There have been rough patches but over-all it has been less awful than I expected. Still, I'll be glad when it's over. Don't be afraid to contact your medical oncologist's office with questions. I call my center at least once a week with questions, in addition to the questions I ask during my weekly exams and infusions.
0 -
MLMSC - hello, I am 59 and am starting Taxol & Herceptin this Friday. My mastectomy surgery went smoothly, still uncomfortable with the spacer but no pain meds for over a week. You are finished and on the downhill side - is the hair growing in now? I am just resolving that I will lose mine that way if I don't -- we'll see. What does the Latisse do?
You ladies are a blessing.........thanks for sharing.
0 -
Thanks ATerry for the answers and encouragement!
0 -
Welcome Linda!
I am going for my second Taxol treatment today. I would advise having a ride home for your first treatment. They gave me a double dose of Benadryl and it knocked me out. First time I slept during chemo.
I experienced a little restless leg syndrome (nurse said from Benadryl) but only that day. I experienced a couple of really sleepy days, that was a few days after treatment. The side effects really weren't that bad (I just finished 8 weeks of AC, which was tough).
I did have a less common reaction to the Taxol called Hand-Foot Syndrome, causing pain in my feet and finger tips. But I found out yesterday that only around 1% of patients have this reaction. (They are lowering my dose and giving more steroids in days following treatment to see if that helps.)
I was told the neuropathy starts later on, tingling and numbness in hands and feet. So I haven't seen any of that yet. Seems to be that neuropathy and fatigue are most common. Oh, and constipation from the pre-meds, so my dr. advised Miralax and start with a 1/4 dose day before chemo.
Best of luck!!
0 -
I'm surprised that hand-foot syndrome occurs in only 1℅ of patients. There are typically a few people in any given "Starting Chemo in X Month" thread (me included) with fewer than 100 women actively participating. That makes me wonder if the side effect is underreported.
Lyn
0 -
Going today for round ten. Would much rather stay home lol. Would be easier to digest if I was only doing 12 rounds but MO is keeping me on it for awhile. Sucks. I developed a skin ulcer on my leg under the naphostomy bag. Doc called in a topical antibiotic. Has anyone had this and if so how long to go away? It itches sometimes but doesn't hurt. Looks bad though.
0 -
What is the group's experience regarding adjusting the dose or or terminating Taxol treatment due to neuropathy in the hands? I just had a new port put in yesterday because the first one has worked inconsistently to date (4 AC & 5 Taxol). I'm concerned that the neuropathy in my right / dominant hand is going to be a problem and very freaked out at the possibility of permanent damage; however I have no idea how bad the neuropathy has to be before adjustments to the treatment plan are made. Being triple negative, I especially want to see this through and yet another surgery (with its related co-pay) makes me all the more determined, but I need functioning fingers.
Lyn
0 -
scaredashell07, I did 4 AC treatments, over 12 weeks and am now finished 5 of 12 weekly Taxol treatments. The side effects of the Taxol for me have been much easier than with AC. I was useless for 5 days post AC, nauseous, super tired, couldn't focus on anything. I'm still tired on the Taxol but better than I was or maybe I'm getting used to feeling tired all the time. I get achy in my hips and back 48 hours post Taxol and it lasts for about 2 days. Tylenol helps. I have had some nail changes, hortizontal ridges and some darkening (purple). My taste buds are gone. The end of my tongue feels like I drank something too hot and it's felt that way since the Taxol started.
Good luck!
Gail
0 -
VLH...I think on my 8th or 9th Taxol infusion...I told the chemo nurse that my hands hurt when I bend them and the tips of my fingers and nails were very sore...she emailed my onc...and he response was to cancel chemo for that day...the following week when I saw him before chemo..he said he lowered my dosage....which I felt a big change when he did that...my hands no longer hurt when I bended them...but I still had a lil soreness with nails and fingers.
0
