Regimens, side effects, and support from others going through chemo.
Posted on: Jun 7, 2012 02:23PM
Hey there! I didn't see a separate group for weekly Taxol treatment; thought I'd start one just so we can compare notes with each other......I always learn so much from everyone! Just finished treatment #3 this week, and so far my side effects have been loss of taste and fatigue, especially day 3-5. This has been easier on me then A/C treatment so far.
What are your experiences?
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Jul 6, 2021 12:39PM Moderators wrote:
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Jul 6, 2021 02:58PM LoverofJesus wrote:
I will be joining this group in August. My question May have been answered before but when I try to look it up I don’t see what exactly I’m looking for.
So here it goes. So most of you find Taxol to be easier that AC? I know with AC I have not had many SE. I have had two infusions and the only side effects are just being tired on days 3 and 4. Other than that I have not had issues. I know Taxol can come with neuropathy. But for the ones of you that have not had that do you find Taxol easier to function with?
Jul 6, 2021 08:16PM Aram wrote:
Hi LoverOfJesus, for me weekly Taxol is not comparable with AC at all. I had a very hard time on AC. With Taxol, so far, my main side effect has been steroid crash on day 3 and 4. Other than that just general fatigue.
Jul 6, 2021 08:29PM - edited Jul 6, 2021 08:44PM by HopeHeal
AC can be hard on the GI system in a way that Taxol is not. While on AC I had to switch to a low residue/fiber diet to avoid debilitating abdominal pain due to inflammation of an intestinal section. WIth Taxol though, I have more myalgia in my back muscles, a possible contribution being not drinking enough water. Taxol seems to also really lower my RBC count more than AC, to the point of needing a transfusion. Each chemo has its merits & drawbacks but I will say I love being back on my regular diet after AC.
Welcome to the site and I wish you a lot of health on your journey.
Jul 6, 2021 08:37PM - edited Jul 6, 2021 08:43PM by HopeHeal
I make icing hands and feet a priority on Taxol and and try not to drink too much before my infusions (also empty the bladder beforehand), which only last 1.5 hours. I think it's also important to focus on good nutrition during Taxol because it can really affect your bone marrow's RBC producing ability and sap your energy, so your body needs all the help it can get. I take whatever vitamins my MO allows and also consume a lot of produce, which also contains fluids. Taxol causes me weakness and back pains the first few days so taking my mind off the distress is a big help; I cope by watching movies or reading interesting material. I hope Taxol goes well for you and wishing you good health. Welcome to the group!
Jul 6, 2021 09:28PM LoverofJesus wrote:
Thank you guys so much!! I would love to hear from anyone who will post. Not gonna lie the RBC drop scares me. I have had such great counts even on AC. So not looking forward to that.
Love you all and praying for everyone. Praying I and you all, end this journey healed and whole.
Jul 7, 2021 02:38AM Amary2021 wrote:
Welcome, swimgal! I didn't do the ice cap too. Unfortunately, I lost all my hair after my 2nd AC chemo, which was 1.5 months ago. If the ice cap helps, go for it!
Finished taxol #2 yesterday and feel so far ok. Brought ice for hands and feet, but slept through the infusion and woke up afterwards so didn't get to ice then. I did ice when I got home. :-P
For constipation, I eat cooked oats for breakfast, eat lots of papaya all day, drink heaps of water, coconut water, gatorade, and fresh juices (with celery, apple juice, orange juice, ginger). I snack on nuts and dried fruits, plus roasted corn with salt/bbq flavour. I find that it really helps to ease constipation and I'm glad to say that I am able to go to the toilet regularly.
I also walk/jog and swim almost everyday. I find that exercise keeps my mind off the side effects.
Take care, everyone!
Jul 7, 2021 12:37PM swimgal wrote:
Hi, HopeHeal. Thank you for your tips. With doing the cool cap my day will be longer, so hopefully I can last without having to use the bathroom (fingers crossed). I'm really trying to focus on my diet. It wasn't bad before, but totally cutting out the processed foods. My start date is set for 7/22, so trying to do everything I can before then to prepare - as much as possible :).
Jul 7, 2021 12:44PM swimgal wrote:
Hi, Amary2021. Thank you so much for the nutritional advice! I also swim, walk, bike or do weights several times a week, so I am hoping I can keep that up during Chemo. I have my education session tomorrow, so I'm sure I will learn a lot from that. I'm hoping they provide the cold gloves and socks at the center, but if not I will definitely bring my own supplies for that. Neuropathy in my hands is a big concern for me since I can't do my job if my hands are not functioning.
I'm so grateful that I found this forum. It's already been so helpful and I have no doubt will be even more so in the months to come.
Jul 7, 2021 01:39PM MimiArmani wrote:
I experienced the same - weird taste, loss of taste. Tolerating better than A/C. I am on #8. The past three weeks I am experiencing pain. Random places, spine, knees, muscle. I got a massage yesterday that helped. I am also using Icy Hot at night and taking Tylenol about every 8 hours (oncologist approved).
Jul 7, 2021 04:00PM claire1973 wrote:
I did do the cold cap and did drink lots of fluid on chemo days both before and during—it is what made me overcome the side effects.
My nurses got to know this, but with every infusion I would tell them, “I will want to use the bathroom halfway through.” They were always grateful to know in advance and alway came and helped me get up and walk to the bathroom with my IV bag.
I will “thumb up” on the suggestion to walk every day. Many days I did not feel like it—just too tired—and I told my husband please encourage me to walk every day. He did do that and sometimes I still declined, but I always felt better after a low impact walk…and when he joined me it was always great conversation.
Jul 8, 2021 07:34AM Amary2021 wrote:
Wish you all the best with your sessions! Are you getting a portacath installed for your infusions? I have one and I find that I have to limit the weights or rowing exercises, but may be different for others. I just don't exert too much effort as taxol gives me some fatigue, the kind that I can't fight with increased cardio intensity. :-) I just take it easy and jog/walk shot distances when I can.
Claire1973, you are right about the low impact walks. I got myself a cute-looking steps tracker/watch to motivate myself with my short walks. :-)
MimiArmani, wow almost there with taxol! I do get random pain too - on my knee, which was always niggling every time I used to run long distance, and my teeth are more sensitive than normal.
Take care, everyone.
Jul 8, 2021 08:39AM swimgal wrote:
Claire1973, thank you for the info regarding cool cap and bathroom use during infusions. I will make sure to inform my nurses.
Amary2021, yes, I am getting a port for the infusions. Really good info on the weight limits with that. Can I ask you, is it painful when they hook up the infusion to the port? I read a suggestion from someone to get a topical numbing cream to help with the "stinging" at the port site. Didn't know if that was always the case.
Blessings to all
Jul 8, 2021 09:15AM Aram wrote:
swimgal, I don't do any numbing with my port. My nurses suggest a bag of ice to numb the port but I don't do that either. It was more painful the first two times specially first time as it was a day after it was put in. But now it is mostly one little sting.
Amary, I agree with physical activity. I try to reach my step goal everyday which I have lowered to a more manageable number. But even with that on my steroid crash days I can't reach it everyday but at least on other days I try.
I finished my 6th infusion yesterday! I am halfway done with THP!
Jul 8, 2021 09:32AM claire1973 wrote:
My weekly Taxol was January through March. I still have my port because I will receive Kanjinti every three weeks until January. In fact I’m going this morning. It’s so easy I decided to keep the port instead of removing it toswitch to an IV for those infusions. I bruise easily and feel faint when I get IVs through a vein.
I do put lidocaine on my port site about 90 min before every time and cover it with a piece of saran wrap and some paper tape. There have been a couple of times that I have forgotten to numb it and the pain is really not too bad, but with the lidocaine I feel absolutely nothing.
Jul 8, 2021 10:22PM swimgal wrote:
I found out today that I will have the numbing cream, so I will use that for sure. Glad to hear it's so effective. Being a big baby when it comes to pain, I'll take anything I can get. I get my port next Thursday, which is a week before first treatment.
My next decision is which method to use to ice my hands and feet. Need to do more research on that.
Jul 8, 2021 10:26PM claire1973 wrote:
wanting to avoid pain does not make you a big baby. it makes you smart. ;)
Jul 9, 2021 09:12AM Amary2021 wrote:
Yes, I heard about the numbing cream, but I have not used it. It does sting when the needle is inserted, but I just take deep breaths. When the infusion starts, I don't feel the sting anymore.
For icing hands, I bought an ice bag and fill it up with ice. For the feet, I got the socks with cold gel inserts on Amazon. I then bring all with me in a freezer bag to chemo.
The ice bag I got is also suitable to use as a hot pack, which I then use when I experience joint pain the next days after my Neupogen or filgrastim injection to boost the white blood cell count.
Yes, I hear you on that steroid crash. Good effort on the step goals!!
Take care, everyone.
Jul 9, 2021 09:56AM Aram wrote:
I use socks with gel inserts for my feet. I got gloves for my hands with gel inserts as well but they don't stay cold as well as the socks so I bring the ice bag with me as well specially on days that I have Kanjinti and Perjeta. Taxol is given last so the gel inserts do not stay cold as well as Taxol only days.
Jul 9, 2021 04:17PM TXLorelei wrote:
I was supposed to have #8 today, but my MO decided I needed a two week break because she’s concerned about neuropathy side effects. It feels like like there’s a layer between my fingers and whatever I’m trying to touch, especially on my left hand. The symptoms decreased every day but didn’t go away completely between treatments, so she hopes that a break (and a bigger dose of Gabapentin) will do the trick.
Jul 9, 2021 08:21PM - edited Jul 9, 2021 08:21PM by HopeHeal
Hi Swimgal, for icing I was advised by my MO's nurse to use cold gloves and socks available on Amazon, as well as approx 12 oz frozen water bottles. The water bottles work really well. I bought 6 from the drug store and store them in the freezer. After loading them into my cooler inthe morning they stay cold throughout my treatment, so I only end up needing 2 or 3 bottles. I wrap my fingers and toes around them and also put one under my heels if necessary.
The cold therapy gloves I bought are also very good but don't last through the whole treatment and warm up within 10 to 20 minutes. Same for the socks. So, I bought 2 sets of each and rotate during the treatment. I removed the gel inserts from the socks, freeze them then just step on them while sitting. Once the gloves/socks get too warm I switch to the reliable frozen water bottles.
Hope this helps!
Jul 10, 2021 06:04PM - edited Jul 10, 2021 06:05PM by HopeHeal
Hi all, I hope everyone is having a nice weekend.
My nails have been feeling hard in the last week and now they are hurting and turning brown in the middle when I use my fingers (such as when typing) I am halfway through my weekly 12 cycle Taxol. From what I've read online, is this the beginning of some kind a fungal infection? Is this something I should contact my doctor over or just ignore it?
Thanks for any responses.
Jul 11, 2021 01:18AM Amary2021 wrote:
Halfway through taxol, that's great!
I haven't heard the nail discoloration to be linked to a fungal infection. My nails started discoloring from my 3rd AC up until now with 2nd taxol. My fingers don't hurt though so I think it's worth to mention this side effect to your doc or nurse.
Hope all will be ok.
Jul 11, 2021 11:35AM - edited Jul 11, 2021 11:37AM by claire1973
hi, my nails also darkened both at the cuticle and at the ens of the nail closer to the finger tip…especially my thumbs . My oncologist said that is a side effect of Taxol and can mean that your fingernails might lift from the nailbed. That said, mine did NOT lift at all and they started to turn brown around treatment number six. They normalized about a month after chemo was finished.
All fingers and toes crossed that you keep the nails but they do apparently grow back in very quickly. Big hugs. All of the side effects can be so confusing.
Jul 11, 2021 07:47PM HopeHeal wrote:
Hi Amary and Claire, thanks so much for your helpful answers. I am indeed at treatment 6 so right on schedule with the nail browning apparently. Today I cut all of my fingernails short to reduce any leverage on and thus pain to the nail bed. It's really helping. Coming off from the nail bed sounds dreadful, I hope that's not a painful process. First my eyelashes and now my nails too, I am truly humbled.
Jul 13, 2021 11:53AM swimgal wrote:
Hi, all. I am set to start my 12 weeks of Taxol/Herceptin on the 22nd. Port insertion this Thursday. I am doing the Dignicap and I bought several sets of cold gloves and socks so I can just switch them out during infusion. My MO is out this week, but I want to ask her on Monday if I can use Glutamine during chemo to help minimize any chance of neuropathy. I have started assembling my supplies so hopefully I won't forget anything. So glad I found this site. You've been so helpful and I know I will continue to use all of your hints and advice.
Jul 13, 2021 01:23PM Amary2021 wrote:
Indeed a humbling experience! Finished 3rd taxol and noticing that my lashes are slowly going. The eyebrows are thinning too. I heard about using nail hardener polish on the fingernails so I got one. Apparently OPI Nail Envy is a good brand, but I have the Sally Hansen nail rehab one. Not sure if it will work, but let's see!
Swimgal - I noticed that Benadryl makes me very sleepy before the actual taxol infusion so I started putting on my ice packs just before the Benadryl then I sleep through the entire taxol infusion. Also, if you notice any nausea, which you are not supposed to feel with taxol, let them know as it may be due to some pre-meds and my doc says it was ok to not be infused with anti-nausea meds next time if I didn't feel that I needed them. Take it easy after your port insertion as it's a minor surgery. It limited my activities in the following days. I have not heard of using glutamine for neuropathy, but if it helps, that could be good.
Take care, everyone.
Jul 15, 2021 02:26PM Aram wrote:
I had my 7th infusion yesterday. I don't have the observation period for Kanjinti and Prejeta anymore so it goes much faster. For icing I used the ice bottle of water trick someone had mentioned here and it was amazing, much better than my gloves.
Last night, I suddenly got blurry vision. Dr google said it might be my blood sugar. After taking my blood sugar it was 14.8 mmol(266 mg)! I emailed my MO and he said dexa can cause that but if it repeats I will need to go on Metformin. I did a 16 hour fasting, and still it was high in the morning. I will see how it goes for the next couple of days. Did anyone else need to go on Metformin?