Weekly Taxol group
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Thanks Aram. We’re very close in age to each other so wondering if that will be my situation too. I’m completely fine either way.
I’m so thrilled that Sun (Day 5) and today (Day 6) I feel 100%! I mean… I over ate supper last night bc it tasted so good and felt nauseous- but that happens when I normally over eat so I can’t blame chemo.
The only thing I notice today is a itchy scalp and some scalp tingling…. Which I think means I’m prob going to be a early shedder in my hair 😒. I’m fine with that though. It will be what it will be.
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Hi 1982M, I'm so glad you're doing well after chemo! For me, the first one was the worst so far in terms of side effects. I was really afraid the neuropathy would be too much, but I added glutamine supplementation (10 to 30 g per day), and that, I think has really helped. I feel like my appetite has worsened considerably as time has gone on - was only able to eat 3 crackers yesterday, and I forgot to drink much of anything and ended up in the dumb ER with a kidney stone yesterday (I got them before cancer, too, so this probably isn't a worry for anyone who isn't already prone to them). They gave me 2 L of fluid, and I feel a lot better today. I've dropped 4 lbs since starting, and have decided I really need to start pushing food on the days where the dexamethazone is still active. I've been forcing food down my throat today, and trying to drink more water. My blood counts have been hanging in there. I'm a bit on the anemic side, but white counts started dropping, but then leveled off and came back up after the 3rd week.
Other than that, things have been going ok. I'm still able to work every day except infusion days. Weekends are a bit rough, but have been from the start. I'm psyching myself up for week 5 on Wed., mostly by telling myself that it's almost half over. Exercise really is a helpful thing, and I think it's wise to push yourself to try to get some in every day that you can, and I probably need to take my own advice here!
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Its funny you mention appetite. I def feel less hungry in general. I thought the dexamethasone would really gear up my hunger but I’m not hungry until I’m actually eating.
I’m really sorry to hear about the kidney stones. That doesn’t sound fun at all.
Good luck Wednesday infusion buddy! I really hope your 5th infusion goes well. It’s really helpful to hear how others are doing on weekly taxol. Thank you so much for sharing!
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Hello everyone.
Just finished the third round of Abraxane. I am using a cold cap and cold mitts/socks; My thanks also to the kind person who linked the cold mitts and cold socks!! So far so good with no hair loss or neuropathy, although the most painful part of the treatment for me is freezing head, hands and feet. So far so good with my veins--Anesthesia refused my port placement because my breathing was so bad. Pulmonary appointment today, so hopefully I can get the port rescheduled. Just my luck to be a rare case where the mediastinal lymph nodes are crushing my airways. There have been some really rough breathing days and nights--O2 stats in the 70's. It is reassuring reading about everyone's experiences. Thank you so much for sharing.
Good luck all!
Moving
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Moving: Sorry to hear about the port and difficulty breathing. I hope the Abraxane provides some relief. I don’t have a port yet either.Apparently next Wednesday just before my chemotherapy they are putting it in. I’m not suppose to have someone with me, but I’m pretty sure I’ll need help getting from port placement to chemotherapy. They are in connected buildings but I have ice pack coolers to bring etc. I’ll prob skip the ice packs bc I don’t think I can co-ordinate it all alone.
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Second infusion done! Yeah! I'm super tired but otherwise fine. My mouth has a bad taste in it. Immediately after chemo I came home and ate a sandwich and it tasted pretty blah. No transfusion reaction or anything. I slept prob 2hrs without meaning too. I just ended up falling asleep.
I'm doing an awful job of freezing my hands and feet. The Benadryl makes me so high I can't really monitor myself. Covid rules has no helper so I'm kinda all over the place.
Edit: Slept pretty good last night even with premeds. I took 2.5mg melatonin to help me drift off since I had a two hr afternoon nap. Work up a few times but still did good. Got up at 6am, feeling pretty tired thought. Water taste weird. I made coffee and I already feel pooped out. I have the day off today and so does my middle child. It's going to be a take it easy day for sure
Edit: day 2 post second treatment went well, day three feels good too! Much better then first round. Zero nausea. Appetite is small- which surprised me. The one thing new is in full of pimples- I never had acne in my life. I’ve always had great skin- a break out was 2-3 pimples as an adolescent. I more have many small pimples. I’m trying not to mess with them but they drive me nuts.
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Just learned today that Taxol is my next journey. How has hair loss been for most?
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Hi Elaine,
I just had my second infusion and my hair is hanging on- but it's only 8 days since my first infusion. I did ask others and will post the link for you to read through if you like.
https://community.breastcancer.org/forum/69/topics/881007?page=1#idx_9
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Hi 1982M, I'm glad to see you're mostly ok. The first 4 weeks, I had the weird taste thing. Seemed like week 1: everything was too salty; week 2: everything was too sweet; week 3: everything was bland; week 4: everything was bitter. I'm 1 day into week 5, and so far, everything tastes pretty normal, and I hope it stays that way all week (it was my birthday yesterday, so maybe that is taxol's gift to me). I work in a lab, and we have a water distiller, and that's the only water that tastes ok to me these days, probably because it has nothing to make it taste in it. Where I live, our tap water is extremely calcium rich (very hard water), and I've never really liked it much, but with chemo, I don't like it at all, and it's probably why I ended up dehydrated last weekend.
My blood counts are getting a little wonky, and I feel less up than usual from my premeds for the day after infusion, but Benadryl did get added back in, so maybe that's all that's going on. Actually, I think the Benadryl may have helped me feel a bit better than usual yesterday. Anaphylaxis might be the thing that was making me feel so terrible the day of.
I'm sorry about your not so ideal icing, and hope what you're able to do is enough to keep your nerves in tact. I feel really spoiled here - I get to have up to 2 people with me so far, and they tend to keep me well iced and remind me to drink fluids all throughout infusions. I really wish you had that, too.
Hang in there; next week for you is 1/4 of the way through - we are going to get through this!
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Hi Elaine, I am cold capping (Penguin), and have managed to keep most of my head hair so far (thank you, my beloved daughter who takes every Wed off to save at least some of my hair!).
Other than head hair: my axillary and leg hair went pretty quickly - like 1-2 weeks in or so. Weirdly, they seem to try to return mid-week, but I "shave" these days quite effectively by rubbing my hand over whatever hair I want off. It is really weird. Other downstairs hair started coming out a lot last week, and that continues this week. Eyebrows and eyelashes are starting to thin this week, but are still hanging in there. Arm hair - it must not grow very rapidly because it looks just the same as always so far.
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ElaineK: I just finished 11 of 12 Herceptin/Taxol treatments using the Dignicap and I have retained the majority of my hair, I would highly recommend cold capping if that is important to you. Everyone is different with the hair thing. It was extremely important to me. I only wanted those close to me to know about my cancer and I have kept working throughout my treatments, so with very little hair loss I wasn't forced to tell people who didn't know. I totally understand if the hair loss is not a big deal. It's such a personal thing. If you do go with cool capping a neck pillow is very handy for two reasons: One, it keeps the cold tubes that attach to your cap from touching you and also it's uncomfortable to lean your head back on your chair without the pillow because the cold from the cap intensifies in that spot where your head touches the chair.
You didn't ask, but I'll also highly recommend cold gloves and socks to prevent neuropathy. Have had no neuropathy using these.
I wish you all the best with your treatments!
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AMG: first of all “Happy Birthday!". Prob not how you hoped to spend it, but I'm glad your taste buds were kind. Also very glad you didn't have another anaphylactic reaction.
I actually felt better today then I expected. I ended up going for a walk around the park while my 8 year old played. Did some laundry and cleaned up a bit. Last time I was a mess day 2! Hoping I feel good tomorrow since it's a work day.
I do really wish I had help. Next week I have my port placed and then straight up to chemo. I'm prob going to be pretty loopy. Covid is really awful where I am so it’s bare minimum service right now.
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Finished week 5 of 12 yesterday.
neuropathy in my fingertips. Two days after 4th infusion, pinkie fingertip went numb. Sensation returned to normal there today. But yesterday at the infusion center, middle and ring fingertips of the other hand went numb and are still numb - even with wearing ice gloves for 90 minutes. No issues with my feet yet.
Hair is starting to shed a little. Maybe 20 hairs each time I brush. Nothing noticeable yet to others but I sure notice it.Oncologist said I will probably start losing more this week and maybe a lot next week. Not losing any other body hairs yet to my knowledge.
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SmoothOperator78-I woke up this morning week 5 of Taxol on Tuesdays, with no feeling in my right pinky finger and part of my ring finger. I've not iced at all, but I'm at work now and the feeling is back except for the middle part of my pinky tip of the top finger pad, if that makes sense. Strange. I also have some loss of feeling in the bottom of my left foot in between my big toe and next toe. I've been trying to massage it each night to see if that helps at all.
Next week I'm half way done with Taxol. I'm losing my eyelashes now and my eyebrows. I already lost ALL of the hair on my body except eyelashes and eyebrows from AC. Some of it is starting to come back on my head, but there is more scalp than hair right now.
My taste and smell are coming back. Both have been gone for some time. Not COVID related, just a SE for me from the medications given. And my left toenail is going which I guess can happen, too. If I could redo, I might try icing, but not sure at this point that halfway through it would make a difference.
Fridays and Saturdays are my worst days for bone and joint pain. If I keep on a strict Ibuprofen regimen, I can keep it under control, but it hurts when I don't. Also shortness of breath when walking up stairs. Anyone else experiencing that, too?
Here is to Friday. Another week is almost completed. Sometimes I look back on my week and wonder where it went.
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Thank you Dicon;
I barely survived the severe migraine like headache (sharp drilling through my temples) from my first treatment on the 14th. I was very nauseous and worried about throwing up; with a headache like that. I could barely feed my pets and let the dog out. It was so awful I asked a friend to take me to the Urgent care and they gave me a shot of Toradol. It reduced some of the pain and then I started having a sinus headache. That was manageable at least. Primary gave me Amoxycillin for sinusitis.
The diarrhea was not great and Kaopectate didn't help; I started Imodium and it worked. I am finally fine this last week before round 2.
The oncologist think that Emend (anti-nausea) they gave me IV first is the reason for the headache. They said they won't give me that again. I hope they are right. At least my bloodwork the next day was ok. I had the Neulasta shot the next day too.
Wishing everyone well through this!
MEandJax
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MEandJax,
I'm so sorry to hear that you've had some horrible SE's with all of this. Do you have steroid pills to take after your chemo treatment at home? I had some severe headaches with AC and my oncologist gave me extra steroids to take at home for two days. It helped tremendously. We also figured out with me that it was one of the steroids (Zofran) as well as the Emend. Once they added in the dexamethasone at home, it was a game changer for me and that big of a deal.
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Nerve pain, neuropathy pretty bad after first taxol. Will try icing hand and feet next taxol infusion (dense dose) on Tuesday.
Cymbalta for nervepain
Onc PA prescribed Cymbalta for nerve and bone pain. Prescribed for various neuropathy conditions and depression. I’m to start tomorrow. I had tried an antidepressant SSRI once years ago when I went on Tomoxofin and did not like how it made me feel. But, If it heLps with the shooting nerve pain in my feet and legs, I’ll take it till I’m done with the Taxol. Anyone have that drug suggested?
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MEandJax- that sounds awful. I'm so sorry you had to experience that. I only have had three migraines in my life (this past year) and they are terrifying and awful. Lots of love to you!
KotchAJ: 🎉 almost half way there! That's so exciting! I hope the numbness and tingling subsided.
Dicon: Sorry about the neuropathy. I got a tiny bit the first time and none the second- I'm pretty loopy and all alone during infusions so the only one that I'm icing correctly is my feet. No meds though- sorry!I'm day 4 out of my second cycle and honestly it's not like the other round. I had some bad diarrhea in the morning yesterday and was utterly exhausted. My scalp hurt like I was wearing a pony tail (which I wasn't since it's only a inch or two long). I feel tired this am but hopeful it’s a better day. I still feel like the first was harder.
My youngest started coughing last night. I'm vaccinated but now I'm wearing a face mask and face shield bc I don't want to miss my port and chemo next week. Im hoping it's just a cold, but Covid is overwhelming where I live. I am making DH stay home from work next week and primary parent so I don't miss treatment. I sooooo want to be done two weeks before Christmas 🙏🏻. I don't want it delayed.
Anyone else dealing with young kids/Covid and weekly taxol? I'm so afraid to catch even a stupid cold but don't have enough help to just keep my kiddos home instead.
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Thank you 1982M!
I am sorry to hear that your family is coming down with stuff; that can be scary. I don't have any good advice as I don't have anyone here at home. Prayers that you stay safe and are able to continue treatments. Mine is supposed to end on Dec 28, so at least before a new year.
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Thanks for the info KotchAJ; I will ask about at home steroids. I do get Dex via IV; which is an odd feeling when it goes in.
They did say anti-nausea can cause it, the Zofran I have at home (dissolves under the tongue) never caused me any headache in the past but maybe IV things are different.
I appreciate this group so much!
MEandJax
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1982M, my treatment was during summer and school was out. But my son has brought the gift of colds twice so far after school started. For him it is just sniffles but because of my immune system I get it worse. I had one covid test two weeks ago and I am having another one today. My surgery is planned for this Wednesday and I really hope it doesn't get postponed. Much harder when you have kids in school.
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I woke up this morning with a lot of soreness under the arm and some swelling in the armpit. I was concerned it might be an infection or scar tissue or something since my neutrophils were low at infusion #5 a few days ago. Waited for three hours for the on-call doctor to call me back. Is recommending an ultrasound early next week.
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I'm starting taxol on Friday. Did anyone get neulasta with this chemo? I got it with AC and hated it. My whole body hurt and I was so tired. I took Claritin and it helped with joint pain but felt like I was getting the flu.
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yes I got Neulasta but I’m on dense dove of taxol, not weekly. One week my white count was so high we skipped the Neulasta at my request. Not a good decision. White count went in the tank and had to postpone AC until it bounced back which took a couple weeks. Again, it was dense dose so the weaker weekly taxol might not have such a dramatic impact on white cells. With the low white counts I was immune deficient and lucky did not get sick. The Neulasta did not give me the nerve and bone pain that the taxol did. We are all different…
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daenerys30, not on weekly low-dose Taxol at least for me. When I asked the nurse educator about whether it was needed for my regimen (because my sister needed it on hers, she said that Weekly taxol didn’t usually cause that level of neutropenia.
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daenerys30- also no Neulasta for me.
Aram: sorry to hear about the colds/Covid testing. My DH quarantined in the basement with her and she seems to be better already. We ended up not getting her tested this time bc it only lasted 3 days and her best friend at school also had it and tested negative. So far I haven't caught it!
SmoothOperator: sorry to hear about the arm swelling. Hope it resolved quickly!
Today was day 6 after my 2 taxol infusion. I had a bit of diarrhea and a bit of fatigue but overall good day. Last week I was feeling amazing on day 5,6,7. I feel like the side effects this round were more subtle but harder for me to get to baseline. I haven't gained/lostwait which is good. I am trying to walk 30-40min a day at a moderate pace but was super tired this past week.
I have my port on Wednesday. I have to have chemo right after. I'm wondering if anyone had their port places without sedation? I hate pain meds/anesthesia so I think I'd rather do it with a block and be awake/alter but also scared to do that too.
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1982m
I had the port done at honor health hospital. It was done in an operating room with an IV with light sedation. I was awake under a cover so could not watch. I felt no pain. It healed well. The hospital is one of the best in the valley and care was excellent through the entire process. I went home with a ride.
There are surgeons who are called intervention surgeons who do these all the time. They do not recommend general anesthesia for the procedure. I was monitored the whole time for heart and respiration. The port connects to a large heart blood vessel. I sure would not want to do it without that “twilight sedation”.
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Thanks Dicon.
I very much wish they wouldn’t have scheduled it the same day as chemo but they did and I have to live with it.
I hope I don’t vomit. I always throw up with narcotics and anesthesia. I can’t wait for noon when all this over!
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Portis in. They didn’t even offer sedation at all. It wasn’t bad though and I was able to walk to chemo on my own across the hospital
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I was too afraid to join this thread prior to my SNLB, but here I am. Taxol + Herceptin starting 10/21. I have my echo and chemo class this coming Tuesday. I'm also in the middle of egg freezing and that's going to be this coming week as well.
1982M, glad to hear that the port placement was no big deal! My oncologist wants to try it first without a port, but we'll see.
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