Weekly Taxol group
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Hi Margun, I have been to restaurants and out in public places with no issues. My white blood cell count has remained pretty good. If my white count goes down I would be more cautious. They check my wbc each week before treatment. You could also make sure to eat food that is completely cooked and avoid anything raw. including salads. But in the long run it is better safe than sorry if you are not comfortable going out and people should understand. You have to do what is best for you.
Debbie
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I echo SparkleGirl. I go out to restaurants, have play dates for my kids, and go to the office. Thankfully, my WBC has been good, but if it got low I would probably be less social.
Question for those with Neuropathy-How do you decide when to tell your ON about lowering dosage due to Nueropathy?
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notdefined- the pharmacist told me that they will decrease dosage due to neuropathy if I can not do anymregular things such as button, hold files in my hand or walk in stable manner
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I avoid going to the public bathrooms. I thought if I were to cover the lid and flush twice, I should do the same everywhere I go and I found many toilets do not have lids.
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Another neuropathy question--
I had my first Taxol treatment last Friday. Had a severe reaction in the middle where my face got hot, my chest felt heavy and I passed out. Woke up surrounded by nurses and drs giving me oxygen and more steroids. I felt better, so they just waited 45 minutes, started back up and finished the bag. The nurse told me my body will just take time to get used to it, but more than likely it won't be a problem. I was icing my fingertips and toes, and being the first one of 12, I wasn't really thinking about neuropathy. Today, however, I have a definite numbness and weird tingly feeling in my forearm, about half of the distance from the inside of my elbow to my wrist. Not sure if this is something I should call the nurse about tomorrow, or if I should wait until my next Taxol appt on Friday. Have any of you had this experience of neuropathy starting somewhere other than your hands or your feet?
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hi. I bought Cryomax ice packs for icing. They last for the long AC chemo infusions, and will continue for taxol. I got four of the 12” for bottom of hands and feet, and 4 of of the six inch to place over the tops of toes and fingers. Then, I got some large ziplock bags and taped then so I could put the ice packs in, and just slide my hands and feet between the two ice packs. I wear then starting 15 minutes before and leave them on until 15 minutes after. I have only had a few times when myfeet tingled; I do not want neuropathy! I also take crushed ice and suck on it during infusions. So far, no mouth sores and only mild taste changes. But, it is different for everyone.
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BAMR - it could be muscle/bone aches and not neuropathy. I have had flu like symptoms (muscle/bone aches) as a SE. However, if you are worried, I would call.
Kitties - I am also using the Cryomax ice packs. I know that the manufacturer says not to use it without the cover but I wear cotton socks/gloves and slide my feet/hands into the covers. I like what you are doing though and I may have to go with that method
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BAMR, I have the same feeling in my forearms and lower legs. Just a tingly and deep achiness. I usually have it the 2nd-4th days after treatment. I think it is more of a bone pain rather than neuropathy. I told my oncologist about it and she was not worried about it. They were more concerned if I was feeling anything in my fingers and toes. Aleve usually helps.
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Hey everyone!
BAMR, I also had my first of twelve Taxol treatments on Friday.
I'm using cold socks and cryomax packs, nail strengthener, dark pokish and Brian Joseph's Lash and Brow gel. Hopefully my arsenal will help to combat SE.
My first Taxol treatment and SE have been uneventful. AC took a toll on many of my blood counts. My WBC and hemoglobin seem to be leveling out. Hopefully my RBC and platelets will rebound as well.
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Hi BAMR - My doctor told me to call their nurse hotline with any signs of neuropathy. It is one of the things they will factor into lowering your chemo dosage... although in my case it seems it may have to be somewhat severe for them to make changes, but I would certainly flag it in case!
I just had my second round of chemo yesterday (TCHP), iced during T & C, and noticed a tingling in a few of my fingers right after chemo that hasn't subsided. When I talked to the nurse, she notified my oncologist and said it is something that we'll keep an eye on moving forward. Beyond changing dosage, she said there is a med they prescribe if the pain gets bad, but not much until then...I'm curious if acupuncture would be beneficial?
HAPPYANYWAY - Rooting for you to get through your Taxol smoothly! Hope your levels return to normal quickly. I've been using the Brian Joseph's Lash and Brow gel for the past 3 weeks and have had minimal loss thus far so fingers crossed. Do you use the strengthener under your polish or is it more so for cuticles?
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Hope we can go through the remaining 11 together! Talked to my friend today, who is an oncologist, about my "neuropathy". He says it sounds like I must have done something to my ulnar nerve. Neuropathy is bilateral, so if it doesn't affect both arms, it shouldn't be a problem right now. He asked if I had been on my computer for several hours. Duh! I've been reading this forum for the last 3 days. Haha! I'm just happy to know it's not from the Taxol.
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Hi six_round_countdown. I use the strengthener as my base coat under the polish. I bought Burt's Bees cuticle cream but haven't used it yet.
BAMR, thanks for sharing the information about neuropathy.
I ask my infusion nurses for tips and tricks every time I'm there. I'll share if they come up with something that's helpful.
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Margun, I've been avoiding any restaurants and fast food places since starting chemo. If I can't see what their kitchen looks like and be positive that they will store and prep things right, I'm not taking a chance. Some of my favorite local places are little holes in the wall. I'll visit them once my chemo is over and my blood counts are back to normal. It will be a huge treat after 3 months. :-)
Update:
I've had 10/12 of my Taxol/Herceptin infusions as of this past Monday. It feels so good to almost be done. No neuropathy or nausea, thank goodness. I'm more tired though. However, my blood pressure has been all over the place .. from as low as 89/60 in the morning to 170/100, even with my BP medication. This has been so worried, which doesn't help. I've notified the NP and one of the MO's. I'm calling my PCP tomorrow to see what she says.
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Had my ninth infusion today. I’m usually ok until the weekend, then exhausted. I do go to restaurants and stores and places with people and it has been ok for me. I guess I feel like this experience has taken enough away from me, so I’m not giving it anything else, but I would tell anyone else to follow their instincts. At one point I had a family member in the hospital and I had to go there every day (you know, the last place we should be during all this), but what are you going to do? We still have to live the best way we can while going through this
Everyone take care, eat your protein, get you rest.
Lauren
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Margun, I was hospitalized twice for neutropenia while on AC and on Taxol I didn't take any chances. I did not go to social outings, I wore a mask if I had to be in any public places like the drug store (but mostly, someone else did all my shopping and errands and I just went to walk outside in big parks where I wouldn't be close to people). My idea of being risky was having a raw green organic salad on the day I had my lab work if my WBC were ok (they were pretty low throughout though so it was a rare treat). Otherwise, all veggies were steamed or broiled and I was super careful. I didn't want to risk getting sick - ecoli or c. difficile or norwalk could be fatal to someone going through chemo
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Welcome six round countdown!
While I’m glad to see everyone, I’m sorry that we all have to be here. I found out yesterday that one of my coworkers was diagnosed with BC. That makes three of us this year.
I know what the stats are but this is crazy!I go for my 4th T&H infusion today. My hair is really coming out so I am wearing a sleep cap at night. It will be cut even shorter this weekend and I guess it’s wig time at work.
I hope everyone is doing ok with the SE and the other stuff
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Digmomrunner how many taxolleft for you? I hope you will finish all with no se. I noticed you are Her2positive as I am but not having Ac. While I am happy you are not getting Ac , called red devil for a reason, do you know why? Perhaps because your tumor is very small
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HappyAnyway, did you buy the replacement gel paks for the socks and change them out halfway through? If so, was it easy enough to do by yourself? I'll probably have help each time, but just wondering.
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ladies did any of you felt pain in the tumor while on taxol? Is it a good sign? Maybe chemo is killing cancer cells
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Kkmay-I felt pain at tumor site during Taxol 4-6. I don't feel it anymore. I hope it's a good sign, but don't really know. My tumor went away during AC.
Today is Taxol No. 10! 14 days to go! Feeling consistent neuropathy in fingers and toes, but I don't think it's enough to lower dosage. I am calling the hotline to give them a heads' up, but I don't think anything will change. Fatigue is there, but I'm still able to accomplish what I need to do. Feeling grateful for that!
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BAMR, the replacements are easy to switch out. I could do it myself.
I also quarantined myself when my WBC was low. Unfortunately, that happened a week after each of my AC treatments.
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Margun- I will have eight more of the Taxol. My Herceptin then goes to every three weeks to finish out a year (June 2020). I will have radiation starting at the end of the Taxol. My tumor was 1.4 cm and no lymph node involvement. If it had been larger or in the nodes, my MO would have gone with the TCHP.
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I am curious to know why some her2positives get Ac and taxol - herceptin and some TCHP. Hopefully some wise ladies here know the di
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KKmay
I do feel pain in my tumor on taxol. I also did on AC. I don’t know if it means anything, but I hope it is a good sign.
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Margun - you don’t have your diagnosis to view. So I don’t know if you are Er/Pr negative or positive, what stage, size and grade and whether you had lymph node involvement and if you are pre or post menopause. From what I’ve read and been told all of that factors into whether you whether you get chemo and/or targeted therapy and what combination. I am post menopause and the size was small enough my MO felt to try surgery first. I had the lumpectomy and no lymph nodes were involved. I got good margins also. So even though I am HER2 + I got the less aggressive treatment. Others here may have some more insight
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Dogmomrunner, I think you said it perfectly. Mine was caught early and small, but they did aggressive treatment since I am Triple negative and pre-menopausal. It all depends on so many factors and also where you are located geographically.....
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Hello ladies! I finished my Taxol on May 2nd. I had on and off tingling in my feet and hands from infusions 7-10 then it became more consistent and the MO was concerned about permanent damage so they decreased my infusion, halfed it, for my last 2 infusions. I still had the neuropathy though it was slightly better. About 2.5 weeks after my last infusion my legs hurt so bad and i even fell. After multiple tests, including a CT scan it was determined it was neuropathy. This feeling in my legs lasted four about 4 weeks and i still have some residual achiness. Please let your nurses and doctors know if your having neuropathy, it's not something to mess with!! I didn't know about the icing so never tried it.
Best of luck to all you ladies at continuing to kick cancer's ass!!!!🥊🥊🥊
~Katie💗
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Thank you ipenelope for sharing. I had on and off since #8 or so, and then it was consistent tingling since Number 9. I told my dr. and he said that since it is not impacting my ability to walk or work that he recommended to continue on course. I had no. 10 yesterday, and the tingling in my toe and fingertips remains. Walking barefoot is harder than walking in shoes. I have a high pain tolerance, so I am slightly concerned. It's definitely bare-able, but at what point will they lower the dosage? I only have 2 more to go. I have been icing as well.
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ipenelope and notdefined, thank you both for the information. I talked to my NP today regarding weakness in my hands. She said it is a sign of neuropathy, but as long as it doesn't impact my daily activities, I shouldn't be concerned. Hmmm. Notdefined, I'm like you, I have a high pain tolerance, it's subjective. I guess as long as I have a loss of strength and not pain, I'm alright.
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HappyAnyway, I will keep you updated on my progress. I am triple negative too, so I hope to finish the prescribed regimen. But I have 7 year old twins that I have to keep up with, and I would like it if my body stays cooperative.
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