Weekly Taxol group
Comments
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MissBee I can tell a difference in my vision up close. I notice it a lot more if I'm looking at something at an angle, like downward. You should see me try to thread a needle! It's time for my annual exam, figure I'll wait til chemo's done. I've noticed my upper eyelids are puffy all the time. I've been using artificial tears to see if that helps. An odd thing to me is, if I cry it's like a river of tears instead of drops. Never had that before. I haven't noticed any extra sensitivity to light or halos. You should probably mention that to your mo. Hope you are all settled in from your move.
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MissBee/LadyHumps-I also am having more blurry and visual challenges as well since chemo started. Does it subside after? No halos however
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I've been getting blurry vision too. It started after the 4th round of AC, on and off but mostly on so I couldn't read or see much out of my left eye. It's been much better since I started on Taxol (I'm on week 4) but it still happens. Told my MO and NP about it, first they said it wasn't a known side effect of chemo, but I didn't think it was a coincidence. They did say it could be associated with neulasta, and it's worse when I'm tired. With Taxol I've noticed my eyes are really sensitive to sunlight so I take a pair of sunglasses when I go out.
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I did a little research. Chemo can cause all kinds of eye problems. Blurry vision, halos, cataracts, glaucoma, etc. My eyelid swelling is one symptom of blepharis. I'll see the np when I go in Wednesday so I'll report my eye issues to her. One more thing for us to deal with. On with the fight though!
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Maya--funny how some se aren't associated with chemo but you can find all kinds of info about it. Too much of a coincidence, right?
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ladyhumps--quite right! I also looked it up when my vision went blurry and found the same things you did. I figured there's no way vision can change that quickly without it being related to the poison. My main worry was that it would be permanent but MO said it wouldn't and so far that seems to be true, it's getting better
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Ladies
My vision started getting blurry after my 2nd AC. It's better now with Taxol, but right after infusions I notice a difference.
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Maya & Valstim glad to hear it's improving for you. I hadn't noticed a difference right after infusion, I'll pay more attention this week. Hope everyone is feeling well today.
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When I told my MO about my vision problems he attributed them mostly to the steroids (pre-med Dex) that I was getting. He lowered the dose and my vision got better; not back to normal but better!
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I think my only vision issueshappen when I accidentally get this Brian Joseph las gel in my eye, lol. Happened a couple times, so now, more careful with my application.
Here is my gyno update: bleeding has subsided, considerably. Went to OB/GYN this morning and had an ultrasound, which was normal. My Dr. Wants me to see MO for my checkup on Wednesday and see if she will give her "OK" for a biopsy of endometrium. He wants to rule out anything else before he blames bleeding on Taxol. 😞 I can't blame him...but oh, do I hate "girly part" biopsies!
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Good luck nolagirl! Glad at least the bleeding slowed some. I sure don't miss my periods!
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Hi there
Nolagirl- my MO said I couldn't go to my yearly gyno appointment because chemo makes you get false positives on paps etc..... But I don't know about biopsys
I have had brief periods of blurred vision; it seems to pass but is when I am looking at my phone or writing in my checkbook now and then.
MO gave me steroids and tramadol to help get through the last few weeks. It was great Friday and Saturday I felt great for the first time in awhile. But...... Now it has back fired on me and I started throwing up yesterday and haven't kept anything down since yesterday morning so I am calling the MO this morning as I don't know what to do because you can't just stop the steroids.... Ugggghh so much for a plan to get through the last bit more comfortably .
I hope everyone has a good day! Everyday we are one step closer to the finish line!
Sawyer
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Hello everyone... I have been on here reading but not posting. I was very very tired most of last week. I have had no other side effects besides rumbly tummy, blood when I blow my nose and NO energy. I take a shower and get dressed and have to sit before I put on make-up. Most of my hair is gone. I did not go for a treatment last Friday because it was Good Friday and the Cancer Center was closed. I went yesterday. So now my treatments will be on Monday. I have 5 more to go.
My eyes have been bothering me too but then I have cataracts in both eyes.
This weekend my sister and her husband came to visit from Florida. They left Monday to go to California to visit their daughter. It was nice to see them.
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Treatment #7- 5 more to go.
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You look beautiful in that pic Praline!! I'm right behind you! Going for my 6th this Friday! I can't seem to get anything done either - I just want to lay around. This week has been NO ENERGY! I try to get things done in the am because that is when I have the most energy. By 12 I am done! Just started shedding my hair last week and it's coming out fast. I am not really a wig kinda person so I may just stick to baseball caps and scarves. We'll see. I'm amazed at how the SEs take on a kind of schedule! Chemo Fridays - I feel the best on this day because of all the drugs they give me! I usually feel relatively good Saturday and Sunday. Monday I start getting what I call Chemo Feet! The best way I can describe it is how my feet feel after having been on them all day cooking Thanksgiving Dinner! That along with the aches and pains continues through Wednesday. My vision starts getting blurry Monday too and that continues through Thursday. And of course the FATIGUE!!! That started with a vengence last week and varies daily but is particularly bad Monday through Wednesday. I'm also trying to manage my diabetes and chronic sinus problems through all of this. It's been challenging. Oh well, onward and upward!!!
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Just got back from MO...my hands and feet are a bit tingling so they are holding chemo tomorrow. I am so bummed. I have 3 to go and just want this over. Has anyone else had this happen to them....
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Gabby56b - i have had the tingly feet but each time the MO asks "have you fallen?" and "do they hurt" and my answers are "no" so i haven't missed a treatment yet because of it. I am on taxol #11 this week. I take the Vit B6 my MO told me to take each night to help with this and i do think it helps because i was sick Monday night and threw up my dose and noticed yesterday i was more tingly than usual. Good luck! i would be bummed if i had to skip one as well.
kymberly - I am not a wig person either. i go with hats and bandanas but i have gone with nothing a bit lately. i guess i am getting more comfortable with the "look"
I agree the SE seem to be on a schedule. I have treatment Thursday so Friday is a good day and then in the afternoon on Saturday the leg pain comes on like a switch and then Sunday the exhaustion and lately the tears (I think i am just over tired and more emotional towards the end); and then the leg pain continues but wraps up about the day before treatment again.
I had to go in for fluids, iv steroids and iv nausea med yesterday; i got dehydrated again and i think the extra steroids (oral ) they put me on upset my stomach and caused vomiting. i lost 11 pounds in 4 days! (not that i couldn't use that with all the weight gain ). The chemo nurse told me "the last few weeks are the worst and don't be surprised if you have a big melt down the week after its over". i told her how i had been teary and she said it was normal.
I can't believe i have 2 to go! Then its time to get the platlets up, get the port out, and start radiation!
Take care and have a good day all.
Sawyer
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Sawyer...thanks for the info. I just went and bought some B6. So glad you are almost done. Hopefully I only miss a1 treatment and not delayed too much.
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Gabby-I am on #4 and have had bad pain but not much tingling. Does that happen as you get further into the treatments more? I am taking B6, L-Glutamine and Lipoic Acid so hoping that helps. Also icing hands and feet during infusions....hope that is worth the pain/effort
I hope you are not delayed too long.Sawyer-you are almost done...thankfully. The fatigue and malaise gets worse as they go for me as well.......now I can look forward to tears too? The joys of chemo.......How much B6 are you taking?
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DFWFLYGIRL
I'm icing, take L-glutamine and B6, but after this last treatment (#2 of dose dense) I have constant tingling in my toes. I have # 3 Monday, see MO right before. Will tell them. I hope I don't have a delay.
It's worse at night once I'm off my feet. I ice before, during and after as directed. Bummer.
I do have to say my nurse (a cancer survivor herself) told me the jury is still out on the icing. She said no matter what some get affected. I guess its like my friend that did cold capping and still lost all her hair. It may or may not work.
Maybe I'd be worse if I didn't ice. So many options.
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I am taking 100 mg of B6 each night . I don't ice . I think mine is ok as it doesn't seem to be getting worse just staying the same .
Take care all!
Sawye
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I am icing my hands during infusion...started taking B6 today.I have no pain. My toes just have a feeling that they are swollen even though they aren't. My hands just tingle on and off. Right now they are fine. No chemo tomorrow means I won't be tired this weekend...my silver li
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Praline Your wig! It looks great and so do you! Sorry you're feeling so tired. This has happened to me twice, exhausted and going to bed during the day, but only lasted a few days each time. Am tiring more easily now though. How did your veins do this time? Glad you got to see your sis and bil.
kymberly & Sawyer I tried on a wig, but I'm not a wig person either. I don't know where you are but the humidity here is horrible in summer. My job requires a uniform plus an extra covering head-to-toe. I'm warmer by nature & I'm thinking when I go back to work it'll probably be bare-headed. I don't expect to have much hair by then. Boy-howdy! Those side effects can pack a wallop! kymberly, does chemo mess with your diabetes? Sawyer, you've had a tough go. Round 11 coming up!!
Gabby had to delay after #8 for numbness/tingling in hands and feet. After 2 reductions in chemo I still have some left in fingertips of one hand. Saw the np today and she asked if I was having trouble doing things with my hands like zippers or buttons, stuff like that. I'm not, so after asking me if I felt like we should delay again I said no, I wanted to get this done. I also had to delay #3 for low wbc counts.
Nolagirl "how you doin?" What did your MO say?
#10/12 today! NP felt my blurred vision was more age related and I had thought the same. She did say sometimes chemo can affect vision so best to wait a bit before getting an exam. I asked about follow-up care. Disclaimer: I may have forgotten some details. I believe she said 6 months after rads I'll get a mammogram, then every 6 months for 5 years. They have the 3D mammo there. We talked about tamoxifen and something else but I don't know if she said when I might start one of those. I'm getting herceptin every 3 weeks til mid Jan. They'll continue to do bloodwork at infusions to make sure marrow is rebuilding itself like it should. I hadn't thought about them doing this but anyway it shouldn't affect the herceptin infusions, right? She may have told me this. Or maybe not. Have my second echo scheduled for next week and will get one every 3 months til finished with herceptin. If my calculations are right, I would only get one infusion in Jan which would be my last. I know I shouldn't be thinking about it already but I would probably almost meet my out of pocket limit with that one infusion. Depending on the dosage and also would have to pay my deductible. Maybe I could not do this last one. But, I'll still have the mammos and who knows what else. Probably come out about the same.
I tried to tell the steroids how late it is but they're not listening.
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ladyhumps...thanks for the info. Can't wait til this is behind all of us. At least I will get some sleep tonight since I won't be having steroids today's. There is always a silver lining.
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I go for my 2nd taxol tomorrow. this week hasn't been too terribly bad. a little d, flu-like symptoms, but today my face is all red and broke out. yuck!
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Ladyhumps- I am doing pretty good. My veins are doing fine. Just a couple of week ago they had to stick 3 times and even though the 3rd time worked, my vein is still swollen and sore. But the last 2 times it has been okay. My MO told me to get a small hand exercise ball( like a squish ball) and squeeze it to make my veins pop out. It seems to work.
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Kymberly- hope you do great tomorrow!!
Sawyer- thanks for the info on false positives! Just another reason I don't need a "lady part" biopsy right now.
Deaconlady- how did you do today? You are sooo close to being done!! 😊😊😊
Praline- sorry exhaustion is hitting hard. I will go until I hit "THE WALL"...the. I'm just spent for the rest of the day.
Saw MO yesterday. Basically, she really did say, "Tell your gyno to take a chill pill." That made me feel better. She said since Taxol is not as toxic as AC or TCH or other regimines, patients won't have their ovaries completely shut down. It's a process, and she said my symptoms of breakthrough bleeding, heavy, and longer than normal, was in the "normal" range when dealing with Taxol and being pre-menopausal. So she said, no biopsy (YAY,YAY, YAY) for me!
Right now, I feel like every muscle is heavier than normal...this typically happens before I crash. Hope everyone has a restful night, Ladies! 😴
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Hi everyone. #7 went well, but the big D struck afterwards,icky....
I'm seeing the light at the end of the tunnel, still feel good overall, just more tired. I feel like my carpal tunnel is coming back. I had surgery 6 years ago for it Wondering if it's the Taxol? My bloodwork continues to be good and I still have hair. I'm blessed that's for sure!Hope all of you are doing well!
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Taxol #4 today......my chemo brain in full force. I packed 4 large icing mittens and no icing booties....so wore large icing mittens on my feet for 2 hours......funny...awkward ..but still did the trick.
Can totally understand delays....no fun. Hope everyone moving ahead to a nice weekend
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Well my 12 weekly Taxol treatments have come to an end –
yay!!! All finished last week .I must say the experience has not been as daunting as I
anticipated and I have coped quite well over this period. When my oncologist
told me that this chemo protocol was “quite tolerable by most people", I did
not believe him but looking back now I do agree with him.Yes I have had side effects but nothing major that has
prevented me from getting on with things. I have
continued to work during treatment ( I do a 4 day week and some days I worked
from home too) and do all the usual household chores and family commitments ive
always done.During this time I have also had 4 Herceptin infusions at
Cycle 1, 4, 7, 10. I have felt no
different from the other cycles so not sure if Herceptin will have its own side
effects when I start having it on its own. Ive been told most people don't get
many side effects on it. Your heart gets monitored after every 4 infusions, my
recent test was great, same as my baseline, so Herceptin has had no adverse
effect on my heart to date.My typical week has been as below:
- Day 1 - treatment day - feel good. I'm given a antihistamine and some nausea and steroids via infusion as pre meds. Infusion of Taxol takes one hour and on Herceptin days which is every three weeks it takes another hour to infuse. I also take a anti anxiety drug under the tongue right at the start to take the edge off the ice caps as I did scalp cooling.
- Day 2 – im on a high from the steroids, so you get lots done, it's a good day for me
- Day 3 - I'm ok in morning but a few side effects start creeping though later in the day
- Day 4 – side effects start creeping through
- Day 5 - more side effects
- Day 6 - back to normal
- Day 7 - back to normal
Then it's time to go back again for the next Taxol, so its mainly 2 days that I felt a little off but nothing too serious.
My main side effects have been
- Metallic taste - chewing gum helped
- Altered taste buds - not all food tastes the same anyone , sweet still taste ok for me but my veggies now taste bitter. This side effect has been with me the entire 12 weeks L
- Dry mouth - I used moisturizing mouth washes and toothpaste for this which did help
- Nausea - none
- Low blood counts etc - all good, Taxol is not known for this, it's rare to have to go to hospital with temps etc
- Aches - have had a few of these but not every cycle, mainly lower legs/hip area, more of this towards the end of treatment. Some occasional Pandol helped.
- Tummy upset - occasional, just took some antacid, sometimes I felt “gassy" too
- Bloody Nose - have noticed this a bit when blowing my nose that there has been some blood, but not occurred all cycles
- Neuropathy - some occasional tingling of toes and fingers but it goes away, felt this more during cycle 10,11,12
- Hair loss - the ice caps worked a treat. My hair shedding started from cycle 5 onwards with my worst week being cycle 7/8. Nobody would know I'm having chemo, I still have all my hair, just not styled like I usually would
- Eyebrows - thinning a bit but with a pencil cover it all looks good
- Eyelashes - all ok
- Hair on legs - still there
- Pubic hair – free brazilian as added bonus J
- Nails - all ok, I use hardener and nail polish every few days
- Skin - have broken out in a few pimples on face and neck area, have changed to a milder cleanser. Also wear a good sunscreen as skin is more sensitive.
- Bowels - have had some looser stools, but nothing too bad
- Weight - weight has been stable despite the steroids. I tried to do a daily walk as often as I could.
- Tiredness – only occasionally did I feel flat, most days my energy levels were good
My side effects have not been the same each cycle they seemed to differ every week, the only ones that have been constant for me are the mouth/taste ones.
One other thing I did was drink lots of water to flush it all out. I drank 3 litres a day and added lemon juice or a bit of cordial if I was getting sick of plain water. I carried a water bottle
everywhere.
No two peoples chemo experience would ever be the same but I
hope that the above can help anyone starting out on a similar treatment plan as
myself.Emotionally I did feel a bit more drained at cycle 10,11,12
– I knew the end was near but it started to feel like a drag going in weekly.So the next stage begins soon – Radiotherapy – having a little break now to chill out J
Angie
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