Weekly Taxol group
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Good morning...
I am so sorry some of you are having so many side effects from the Taxol. I have practically none.
Sammi.... My liver enzymes went crazy after a couple infusions in a row. He ordered it immediately after my infusion last week.. My infusion #4 yesterday went well. My oncologist is very happy that I'm having little, if any, side effects. However, the liver enzymes concerned him. He was definitely looking for mets in the liver...thus, the ultrasound last Thursday (which was also my "off" day from Taxol). I didn't open the patient portal when I got the result because I'm too chicken and don't want bad news to spoil my "feeling great" days. So, I waited until yesterday to "hear" the report. Hallelujah!!! All was good....no mets/tumors, bile duct was fine, right kidney was unremarkable, as well as pancreas. Oh what a relief. He did say that Taxol is broken down in the liver and it was possible my diet could affect it also. as well as OTC pain meds and statins. I always took Tylenol for aches and pains, but haven't had to take any Tylenol for a few weeks...I know that it is processed in the liver. I do take a low dose of Crestor. He asked if I had been eating heavy fatty meals during the week..I didn't recall that I had. My diet is very healthy and I seldom eat friend foods at all. Plus, I've been eating foods that are recommended for high liver enzymes since I got that lab result. So, he ran my usual CBC, and waited for the results of the CMP before starting the Taxol. Both my liver enzymes (AST, ALT) were down to almost normal!! Just a couple of points above the high normal. Go figure. So, it will be interesting what presents with this week's Taxol and next week. Hope my diet is helping. I will be seeing a NP next Thursday, so I'm hoping she has sense enough to wait for the results of the CMP before administering the Taxol. I feel fine today, I've been awake since 4:00 am and finally got up at 5:00. I am going to force myself to take a nap this afternoon. Oh, the onco told me that fatigue is the most reported side effect from Taxol that his patients complain about. He's amazed I'm not in that category...yet! Believe me, I'm not ruling out any side effects in the future....I've just been lucky thus far.
bjquilter....Is your port tilted? When I had my first port put in, I remember at times the nurse would mention that mine was tilted. I never had it taken out after I was finished with treatment...just in case. However, after five years, I developed a blood clot and was forced to have it removed and had to take a blood thinner for a few months. I don't know if it was caused by the tilting or not I had it flushed every six weeks. So, while it might be unpleasant, it's probably a good thing you are having yours repositioned. Good luck!!!!
Hope
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Nonahope,
My port has flipped two out of the last four treatments. My MO wants to reposition it since I still have a years worth of treatment to get through. I'm concerned with having to deal with the effects of surgery and chemo simultaneously. The first time they placed my port was 2 days after my 2nd chemo. I had a really hard time recovering from anesthesia. This time I'm in a more weakened state and infection is a concern.
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Hello everyone!
I've done a bit of reading of old postings and those from the past 6 months, so I apologize if my questions have been already answered.
I just received my 2nd dose of paclitaxel (TAXOL) after completing my 4 bi-weekly sessions of cyclophosphamide and DOXOrubicin (ADRIAMYCIN) and I have been having terrible bouts of flatus (multiple times a day and lots of sound and with almost no control) and I'm also experiencing strange sensations in my eyes (almost like they are swollen, but no leaking or pain) and I can't tell if they are dried out or just feeling dried out.
Anyone have similar issues and possible remedies?
Thanks!
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Nonahope-I am glad that taxol is being kind to you so far!
Bjquilter-maybe it might help if they place your port on chemo day? It might help at least pain wise...but IDK. Mine was placed on chemo day and when they accessed my port before leaving the surgery center so that I was ready for chemo..
I looked at my labs today when they posted on the app that were drawn yesterday. My alt went from 69 to 168 this week and my ast from 50 to 84. I am scheduled for the ultrasound on the 27th. I had my 6th infusion this morning and my enzymes had always been a little high, but not jumped that much in a week. It is amazing how much chemo affects us.
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Missmelissa-I haven't experienced those symptoms that I can remember. But both AC and taxol have dried my eyes out.
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missmelissa90-
I have had weird eye problems with Taxol requiring me to get a ct scan (still waiting on results-yikes). Anyway my oncologist did tell me people can get very dry eyes from Taxol and they can also get puffy from that. It's not really a symptom I've had but she said it's common and saline eye drops can help. Also, I get so much gas from Taxol and had terrible constipation problems with AC. I'm certainly not an MO, but your symptoms sound pretty normal based on what Ive heard anyway!
Everyone else-thanks for the prayers for my head CT. Sounds like I have to wait til after the holidays to find out, so I am trying to distract myself. My oncologist did say when she looked at the images she didn't see anything obviously abnormal, but to take it with a grain of salt since she's not a radiologist.
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bigquilter...Sending good vibes your way that the port surgery is uneventful. I was never totally "out" when I had mine put in and it only took about 20 minutes. I should think if they are just repositioning yours it might be quick in, quick out.
missmelissa...I have had 4 rounds of Taxol. Once in a while, I will get a little "gassy", but usually blame it on the food I eat. Taxol does dry out "everything". I mostly notice my dry skin. I use CeraVe moisturizer and it is phenomenal! It was recommended my by onco.
Sammi...My liver enzymes skyrocketed as I said (above). Both mine were in the 100-200 range. Since my ultrasound was normal, I feel certain it was from the Taxol.
CIW....Will wait with you for the "good" news from your scan. Waiting is the hard part!!
Going to run out and finish up my shopping. Just need a couple items, so hopefully I will be back home quickly. I don't like to shop anytime, let alone this busy weekend.
Taxol is still being kind to me, after this 4th round. Knock on wood!!
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GI issues and flatulence have been common SEs for me since I started chemo.
I'm happy to report that the 25% reduction in Taxol seems to have alleviated the fever and chills that I experienced after Rounds 2 and 3. And my neuropathy isn't as bad.
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taxol hates me lol I just finished round 9 yesterday we had to reduce my dose as gabapentin helped with nerve pain it did nothing for neuropathy. I also have vision problems that come and go. let's not talk about the ridiculous rash that is decorating my face ....At least I can see the light at the end of the tunnel!
Hope you all have happy holidays.
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What do you guys mean when you say vision problems? Blurry vision? Double? Spots? Just curious because lately I’ve noticed my left eye does not seem to focus well. And that’s happened in the past when I’m tired so I was just attributing it to fatigue but of course i’ve got a little voice in the back of my head going hmm.... Anyway, just wondering what your experiences are like.
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frozentoes/my minnesota friend-
For me I have ptosis that gets worse throughout the day (droopy eyelid), so that’s why I had my ct scan. I also get blurred vision in my left eye and a headache from Taxol too.
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frozentoes
I have blurry vision as well as my vision seems dim like there is not enough light for me to see. It appears day 2 after chemo and last a couple of days. MO recommended moisturizing drops my eyes feel better but I haven't noticed a change.
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I had "significant" changes in my vision with Taxol. I waited about 2 months after I finished hoping they would get better but didn't. Hate having to wear glasses most of the time. I never had a rash but everything dried out. Nose was especially bad. I quit after 8 doses because the neuropathy was so painful. Everything but the vision quit being a problem shortly after I stopped.
Sorry for those of you having port problems. I didn't like having mine put in but have had no trouble since. In fact, my current plan is to keep awhile. I'm superstitious enough that I think if I take it out, I will need it.
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Merry Christmas and Happy New Year to everyone!
I’m going to try and shut this cancer stuff out over the holidays.
I’ll definitely be thinking of you all and hoping you have a wonderful time with loved ones.
Vanessa
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I have read many pages here. Think this is the best place to ask my question.
I cannot chance taking Taxol infusion since I have an allergy to benadryl / steroids, rash and heart pals, hyper-breathing and all.
I know all insurances are different, just wondering what other experiences have been as I move forward to a new!!! oncologist. The last MO said nope, Taxol only, until 2 recorded allergic reactions to it. Seriously.
Q - Has anyone been on Abraxane before Taxol?
Q - If so, did your MO have to appeal to insurance so it would be paid? Or did your insurance just approve it, no great fanfare.
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Blue - I have seen people switched from taxol to Abraxane and they don’t have to do premeds, from what I heard the cost is much higher, I think you MO have to get approval for the change because the cost is higher. But you have tried twice on taxol and it didn’t work well with you. I had reaction on taxol infusion, and they slow down the infusion time, then I will be fine. Many people had this problem.
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hello! I'm having weekly taxol #6 of 12tomorrow. (Every three weeks they add in herceptin and perjeta).
I will start with this, my 7.3cm tumor is no longer visible on mri!! Wooo!! It's gone! Wish I didn't have to finish treatments! Still have to finish taxol, surgery, radiation and the rest of the herceptin to do.
Anyways, I had a question, I don't know if I'm getting sick (my son who had the flu shot has been sick with something with very similar symptoms to the flu) but my upper back and Breast bone area Haven been hurting sooo bad the last few days, it even hurts to take a big breath. It also made me dip into the second half of My pain med rx that's I try to have last two weeks. I normally have the crazy bad leg pain but this is new and severe. The pain meds hardly even take the edge off.
Any one experience this? I don't know if its the taxol or what.
Also curious if the effects from taxol are cumulative as it seems each treatment those leg join pains get worse. But so far so good with neuropathy (knock on wood )
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Hey, everyone!
Just thought I'd update you all that my head CT was CLEAR!! I am SO relieved. It was a random on-call doctor that called me, so I did not get many other details. Good to know my droopy eyelid and headache must just be a weird side effect of my taxol. Thank you all for the prayers and thoughts as I waited for the results.
Ps holy moly did the fatigue ever hit harder this week with taxol than the others. I had infusion number 6. Anyone have advice for decreasing taxol fatigue?
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Hi Mojo,
I have a similar dx and treatment plan as you. Today was my fourth of 12 Taxol plus the perjeta and herceptin. They are still trying to tweak my pre meds and infusion time to ward off another severe reaction as experienced in round 3.
I have been having flu like SE's with Taxol, as well as blackening hand joints and nails, but no mouth sores or neuropathy. I am now seeing a cardiologist as deep breathing and light activity is causing coughing fits and light headedness. But I do not have any of the pain you are experiencing. Any severe or long lasting SE's concern me and I don't hesitate to raise the concern, nor do I wait for a scheduled appointment to do so I'd they are that bad. If tolerable, or merely annoying, I will wait.
My NP confirmed that the effects of Taxol are cumulative, especially fatigue. Good luck with the leg pain. I hope they can do something to relieve or prevent it
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Mojo...Supposedly, the flu shot is only 10% effective this year...if that much. With your symptoms, I would call the MO's office. I have not gotten a shot yet. I'm not sure I'm going to.
Taxol is cumulative. My onco said the most reported side effect is fatigue. That hasn't been too bad for me...I will have round 5 tomorrow. My side effect is mostly a bit of achiness on day 3 and 4 after my infusion.
Wow! That's a huge shrinkage of your tumor...wonderful news!!CIW...Wonderful news for you!!! I'm so happy -- what a relief!! The extent of my fatigue amounts to my dozing off in the evening for about 20 minutes -- nothing more, yet.
Sim...What do you mean by "blackening" joints? I've heard that nails might blacken, but joints?
Taxol Round 5 tomorrow for me...will report back as the days go by. Hoping my few side effects will remain that way...just a few!
Hope
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Nonahope - yes, the knuckles at the joints on the backs of my hands are turning black. They look like the hands of a grease monkey. Bottom third of nails are turning black as well. No lifting, no pain or numbness. They just look gross.
The NP told me to make certain to keep my nails trimmed to below the finger line so they don't catch on anything. Nothing they can do. Said this is a common SE of Taxol and may or may not go away afterward.
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Sim...Wow...that is strange...especially the knuckles. That's the first I've ever heard of that happening. So far, so good for me. My nail beds are just extremely dry. I've been using a cuticle cream on them.
Hope
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Hi everyone, I have started taxol this month and round three is Friday. I've heard about the nail issues and neuropathy being common. For those who have had either of these, when did it start? Has anyone had any success preventing it aside from icing, or is that the only thing that works? Im reluctant to ice because I'm cold capping already, but I don't want nerve damage and black nails either so I will do whatever works. Any advice is appreciated, I'm new to chemo so I'd like to be prepared for the possibilities (although I know all side effects arnt universal)! Thank you!
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Hi shay76
welcome to the taxol world. I only ice my hands/feet, but I have heard of people taking b vitamins/some other supplements to help prevent neuropathy. Im sure some people on here will know better than me. Anyway, my neuropathy just started this past week (after infusion number 6) and has not gotten better throughout the week like I was hoping it would. My fatigue also got way worse this time. I'm hoping I'm pleasantly surprised by an improvement for number 7 on Friday.
One day at a time. I'm proud of all you ladies for kicking butt!
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my nails started lifting on my last ac treatment. I lost half of two finger nails this week. I do want to lose my toenails lol cause they have fungus and are gross (so hard to get that to go away)
Two weeks ago, finally caved and had some steroid when I had herceptin and perjeta with the taxol (I haven’t tried steroids yet at all cause they make me crazy but perjeta makes me throw up for days) anyways, I didn’t feel like I even had chemo that week! I wish I wouldn’t have been so stubborn during a/c it couldn’t have made all the difference. I can only have steroids on week one of my three week cycles but wow! What’s a difference
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Shay, I took l-glutamine (30 grams per day) and B6 (100 mg per day) to ward off neuropathy. At the suggestion of the chemo nurses, I waited until I started having some neuropathy tingling before starting the supplements. (Some people never get neuropathy; no need to pay for the supplements if not needed.). The supplements seemed to work for me - it never progressed beyond mild periodic tingling for me. The l-glutamine is a powder that you mix with a liquid of your choice and drink in two or three servings per day. 15 grams is about a heaping tablespoon. I took it the day of chemo and 3 subsequent days. B6 I took every day. I also cold capped, and can’t imagine icing hands and feet in addition! I never had any nail problems
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Good morning...
Shay...I will have round 5 of Taxol today. So far, I've had no neuropathy or black nails. My only side effect is a couple days of a bit of achiness. I have Claritin for that if I need it. But, Advil has worked for me on these days. Plus, I only have to take 1 Advil to take care of the pain. I have a little fatigue, but nothing like some do. My onco said that fatigue is the most reported issue with Taxol. The only supplements I take are Centrum Silver and B-12 (1,000 mcg) a day. Those are nothing new...I've always taken them. Good luck and please keep us posted.
Mojo...What do you do to cover your nail bed when your nails fall off??? This sounds painful.
Wishing all a good day....off for chemo shortly.
Hope
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Hello Nonahope - have you or anyone else out there developed shortness of breath when walking short or long distances? This has started after my second round of Taxol two weeks ago. It seems to be getting worse.
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Gussy-
Is your hemoglobin or RBCs low? That can contribute to shortness of breath.
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Gussy, yes I've had shortness of breath since starting Taxol. Although my team keeps praising my great numbers, my Hemoglobin is low (around 9) and I'm feeling the effects of having less oxygen being transported throughout my body. My heart is working harder and I've become a lounge lizard because I know my body is struggling to make new cells.
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