Taxol Chemotherapy
Comments
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I start the 28th (12 weeklies taxol). I'm disappointed to find out infusion takes so long, but my oncologist says that with weekly dd you minimize side effects from the drug. She explained it to me. I'm completely on board with dd anyway--having just done my four tx of AC dd.
I'm concerned about icing nails for 3 or more hours...would like to hear from others who managed to do this, and how.
My oncologist is fine with the supplements (L Glutamine, L-carnitine, B-complex/B-6) I'm going to take to minimize, hopefully,the neuropathy. she also said that dd weeklies didn't bring on the intense joint pain as did the every other week--and concured with my research that DD weekly taxol decreases reoccurrence for those of us with some lymph node involvement.
Fingers crossed. Hopefully by mid-March I'll be done and moving on to surgery and then radiation. Today I see some light--a pinprick--at the end of the tunnel, since I'm done with AC. Whooo-hooo!!! Did it! It sucked but it's over!!!!
XO
C
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I had a quick question - Do any of your oncologists do a tumor marker test after each chemo cycle? If so, can you let me knnow the name of it.
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Hi, not that I'm aware of. But would it be appropriate in my case? I had (according to my PET) NED before chemo, and the original tumor apparently was the only one found in the biopsy/lumpectomy, which was removed before I started chemo as well. My onc. only seems to be interested in my white count, hemo count, and red count--which have been (so far) all normal.
Hopefully someone else can answer your question.
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My MO doesn't do a tumor marker test, that I know of....but I'm asking her about it on Wednesday when I see her. Thanks for the question!
Phyllis
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I just had my 4th weekly chemo, and the symptoms are the same. Minimal hair loss, contipation, GREAT CBCs. Most ppl have a hard time telling I am even sick let alone going through chemo. I hope everything goes well for you! Oh and it takes about 2.5 hours from start to finish. Pretest CBC, 30 min steroid/premeds drip, Chemo is an hour, 15 mon post chemo saline (I make them finish my bag of saline. With waiting and delays we are usually there for at least 2.5 hours.
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I am going to be starting my dose dense ACT treatments in the New Year. I cannot thank everyone enough for all their tips and sharing your experiences. I'm 33 years old with a 3 yr old and 18mon old so I'm worried about not being about to function at all for 4 months while I'm having treatment. It sounds like there is hope though!!! I meet my MO on December 28th to finalize the treatment schedule. I'm really hoping that I can start right away in the new year.....I just want to get this over with. I'm just completing my scans and things and meet with my Radiologist today. Not sure if radiation will be required or not - I have a double mastectomy. Feeling very overwhelmed with the holidays coming and really emotional over the last few days. The anticipation for the chemo is hard for me and I just want to get going to that I know how I'll fair through it. Thanks again for sharing and I'm really happy that I found this site.
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how often does everyone else see the MO or NPMO when you go for the chemo? I think I've seen them twice. but this taxol does seem more better. I even went out with DH for a beer! last night. flushed it with lots of water. Just wanted to feel normal again. and my taste buds pretty much cooperated.
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I see my MO everytime I get chemo (every other week) and every time I go in for an issue.
It may only be for a 10 minute visit - but I see him every time.
his NPMO comes by the chemo room to check on me as well, but I always seem him. His office has a NPMO phone nurse on call 24/7 - which is really nice to. There are 8 docs in the practice and one is on call all the time....which has been really nice..because we all know issues happen in the wee hours of the morning or on weekends.
I would love a beer !!!! just saying
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I had Taxol on Thursday and today experiencing some achiness but other than that I'm good. Have lots of energy, sleeping good and able to eat. Everything still taste good and this is so much easier than A/C.
For those taking weekly treatments, do you have a port? I never got one before but MO said taxol can burn the veins and said I might need to get one. Don't really want one. Just wondering if anyone is doing taxol without a port -
I was left with permanent neuropathy in my feet from Taxol. My nutritionist recently put me on "Acetyl L Carnitine" and it has really helped. There are currently clinical trials for breast cancer patients on Taxol who take this supplement to prevent this side effect.
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@capinva I have a port; glad I do. The whole idea of it sometimes creeps me out and can bring on some nausea (actually thinking about any of this too much brings on nausea/queasiness
) but I'm glad overall that I have one.@cp418 my naturopath gave me a white paper (current scholarly research) on L-carnitine and you are right--it really helps with neuropathy. I'll be taking it along with glutamine and CO Q 10 to help avoid that possible SE.
On another note, who is icing nails on Taxol? I plan to--and thought I might try to "cold cap" my brows and lashes too, to see if that might protect them.
My first T tx 12/28. Not looking forward to it but ready to get this last drug over with.
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I just finished my 12th and final weekly Taxol today! Woo hoo to me! I have a week break and then will start FEC on 1/3. 4 rounds.
OH and I do have a port. Because of the weekly and I'm on Herceptin for a year.
I'm glad Taxol is done!
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Capinva I do have a port, but I took my first taxol via IV. It wasn't bad. It burned a little, but the nurse just increased the amount of IV fluids until it didn't burn anymore. She was very very Firm that if you get chemo via IV you HAVE to flush post chemo for at least 15 min and then ice your vein for a while. Mine was in my hand. No problems latter that day or the next. No bruising or anything.
I have to say I love the port, with the IV in the hand, its much trickier to go to the bathroom during chemo. I ALWAYs end up peeing a few times. The port doesn't hurt, the only drawback is the scar, but I am going to have a plastic surgeon remove it to minimize scaring. Best Wishes.
Melster: Congrats: I will start my FAC in February! YAY for you to be halfway done!
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phgraham: My MO also does not do a tumor marker test. I always wonder how do I know if these medicines are doing a good job. Do I have to wait till the end of all my cycles? That will be great if you can share the information that you MO gives you regarding the marker.
fredntan: I see my MO every time I get my chemo. Nothing specific, just a general visit to check on how I am doing. Lucky you, you are onto beer already! My taste buds are still quite dead..I would say it is slightly better than my A/C days.
MiniMacsMom: Great that you are doing well! Keep it up.
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@phgraham: My MO also does not do a tumor marker test. I always wonder how do I know if these drugs are doing a good job. Do I have to wait till the end of all my cycles? That will be great if you can share the information that you MO gives you regarding the marker.
@fredntan: I see my MO every time I get my chemo. Nothing specific, just a general visit to check on how I am doing. Lucky you, you are onto beer already! My taste buds are still quite dead..I would say it is slightly better than my A/C days.
@MiniMacsMom: Great that you are doing well! Keep it up. -
@cp41: Thanks for the information. It is only after reading your message I realized that I am having some numbness in my finger tips. Not sure if this is neuropathy. Would you have any idea? I will be meeting my naturopath to find out more about this too.
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I just completed my four rounds of Taxol and I'm really having a tough time with muscle and joint pain. I'm also experiencing swelling in my legs and numbness in my fingers and toes. I finished my last round of chemo three weeks ago and I really thought I would be much better by now. However, I have seen no improvement with the pain.
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curlymommy - you may be experiencing some neuropathy in your hands. My feet were much worse than my hands so more noticable for me. My understanding is it affects the extremeties - so hands and feet for sure. I wish knew about these extra tips and what allowed supplements to use when I was going through chemo. My onc was against any supplements and I was left without any nutrition or supplement guidance back then. The hospital did not provide those services....... I've finally found an excellent Organic oriented Nutritionist who did a very detailed health background on me. She immediately started me on the Acetyl L Carnitine in hopes to control my neuropathy. Some days it was so bad it interferes in my walking. Annoying to know it may have been minimized if I had some guidance during my treatments.
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Hi ladies, haven't started taxol yet, my second AC is tomorrow, then 2 more, but reading about your experiences helps to prepare.
Claireinaz, the supplements you mentioned are all to help prevent neuropathy? The coq10 I believe protects the heart as well? I didn't ask the onc about it as I thought it was an antioxidant, but now I will.
I wish all of you the best with your tx, and pray you will have minimal SEs. To those of you who've completed this part of tx, hurray! -
Claireinez mentioned l-glutamine and vitamin B, I would add vitamin E based on my reading. If only I'd known to take these during my Taxol treatments. I did 4 AC, 4 Taxol, dose dense. I have a lot of neuropathy after the Taxol. I comes and goes and it worse in the cold. Basically I cannot get up from sitting or laying down more than a couple minutes without hobbling around with pain and extreme stiffness in hips, thighs, knees and feet. The feet didn't start up until over 6 months after I stopped the Taxol. I'm at about 9 months from chemo at this point.
You cannot hurt yourself with these vitamins and minerals and if they help with the prevention of neuropathy - so much the better. It is important to take the right amounts and types of B. Check out Mayo Clinics website on neuropathy. Nerves react very well to vitamin B 12 and B 6 in the right doses and formulations.
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Thank you JClarsen!
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My side effects of 12 weekly doses of Taxol. Not to alarm anyone, just want you to know some of the possibilities. My Onc didn't tell me some of these could happen and I really worried at times.
Due to taxol's affect on mucous membranes, it causes them to thin out all over the body. Because of this I had nosebleeds almost the entire time. Not dripping blood but whenever I blew my nose or just wiped it there was usually blood. I also had slight vaginal bleeding, rectal bleeding and bleeding from my urethra. Scary at first, and these all happened at different times, not altogether.
Also, had little red bumps with a little whitehead form on neck, arms and chest....usually a couple days after chemo. I think this was due to the steroids.
The most scary side effect was about 9 weeks in, I started having numbness under eyes and around nose. They did a brain scan which freaked me out. If I had just searched on the boards here I would have seen other women have had the same thing during taxol.
I ended with slight nueropathy in tips of toes, which is still there 2 years out. Doesn't bother me at all.
On the positive side, I had no joint pain or muscular pain. No problems with my nails either.
Hope this helps. I know not everyone gets the same s/e's. But hopefully knowing the possibilities will save you from some stress.
Joni
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Borntosurvive- I am in the same boat as you...I am 34 have 2 young children (7 and 2) and was quite worried about whether or not I could take care of them. I was very lucky throughout my chemo and had very few side effects so I was able to function normally. I am very lucky to have a lot of family and friends nearby. I am not far from Kitchener.....just about 40 min west of London. I also had DD ACT treatment...4x each. One thing I would suggest that has been wonderful for me....look into having your kids go to daycare if possible. The Daffodil Society from this area have made it possible for me to put my 2yr in daycare 2 days/wk. It's good for me and good for her. I have a wonderful daycare provider and my daughter loves going there. It gives her a chance to play with other kids and me a chance to get caught up on whatever I need to...usually sleep! I hope things go well for you and you tolerate your treatment well.
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Joni - Very interesting! I've had a mildy bloody nose since I started my Taxol X 12 on November 8. Every doctor, including oncologist says it's just the dry climate. I now have a sinus infection that I can't kick and am currently on my 4th antibiotic trying to get rid of it. Today they did the nasal swabs for a culture to see what kind of infection it is. (ouch!)
I haven't had much else in the way of SEs except for shortness of breath and tiredness. I'm sorry you had to go through all of that.
Thanks, though for confirming that I'm not an idiot about the nose bleeds!
Phyllis
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Nosebleeds here too! Daily. My onc said it's from Taxol.
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I saw my MO today and asked about the tumor marker test for triple negative cancers. She said that she does not use them because they can cause more stress to the patient with skewed results. They also don't give her good actionable information. She said that there are a lot of factors that influence the results, including things like the sinus infection that I currently have. She offered to do one for me if I wanted it, but said also that my insurance might not pay for it. I declined.
None of that is any different than what I've read here and elsewhere. Some doctors use them and some don't. She just came down on the "don't" side.
Phyllis
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@cp418: Thanks for the information. My MO was also not for any naturopathy treatment. However, I decided to be a bad girl and went ahead and did it based on all the input I received from this site and my sons! Everything seems to be fine as long as nothing is taken to reduce the actual effects of the chemo. I have only been working on the side effects.
@jacee: Thanks for sharing your experience with us. Every since I started my Taxol cycle, I have been having a running nose. Actually dripping water not blood. I have a numbness in my finger tips and toes. My soles and palm feel funny. I need to speak to my naturo about this. Let's hope there is something available for this SE.
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I have had my 6th taxol (and herceptin) treatment this past week. I am halfway done with this particular protocol. YAY!! I have been doing well overall. I think of it as "well, it is chemo"! But my side effects, which I definitely have-- and I have many of what all of you describe-- feel like they are minimal. I do alternative stuff including the l-glutamine etc. but I also do Chinese Medicine. I would like to make a pitch for many of you to give it a try- it is much more than acupuncture. I should tell you that I am licensed practitioner and I am not giving any particular advice over the internet but I can generally tell you that if you find someone fully licensed (O.M. not just acupuncture) you might be very pleased. Check with your doctor that the herbs don't conflict which is what I do. I like to work WITH M.D.s anyway. Just a thought!!
While I will continue Herceptin for a year, I am also going to be starting 12 weeks of Navalbine (if my insurance will cover it) after all this is over. That will be 24 weeks of chemo.......
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seacrtgrdn, my naturopath has put together a specific protocol for taxol; my oncologist is reviewing it now and I should find out what she says pretty soon. I'll post when I find out what it is. I thought CO q 10 was for neuropathy too, but I am taking it now--and AC does have that risk for heart damage, so perhaps that is what it is for. The supplements I was taking for AC I did NOT take the day before, the day of, and two days after chemo--but since I'm getting taxol weekly I'm guessing that the next round of supplements will have a different administration schedule, otherwise, what would be the point if I was only taking them 2 days a week? Just ruminating here...
My onc. also told me that if I suffer ANY neuropathy to let her know right away. She understands that I have to be active for my lifestyle and my professional work now and in the future...she said they would reduce the dose and/or give me meds to prevent this. She's a good one: understands the need for holistic medicine over simply conventional tx. Maybe it's because she practices out of Sedona...
Qatsii, congrats! I wish I was at the point you are at now! It must feel wonderful to say "you are halfway through". And my earlier thoughts in this post concur with yours: we have so many resources at our disposal; get information about complimentary txs and consider adding them to your protocol (with doc's ok). As I write this I am on the way to bikram yoga. I can't imagine how i would feel had I not continued to practice through AC tx.
Claire
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Hi all - just wanted to offer some encouragement regarding Taxol. I had 4 dd AC followed by 4 dd Taxol....finished a year ago. I found Taxol to be so much easier than AC, I almost felt like I was on a "vacation" from chemo! Had none of the nausea, queasiness, weakness, or other side effects of AC. My appetite came back, I felt stronger and more like myself. Had some mild aching in a couple of toes, but hard to know what that was because I had broken them in the past. Some mild body aches too, took tylenol or advil and was fine. One toenail developed a dark spot which eventually grew out...other than that I didn't have any nail issues. Did find that my eyebrows, which hung on through AC, became very thin. But, they grew back really fast after chemo. The biggest problem was the length of the infusion, but other than that it was a pretty easy ride. Good luck to all with your treatments!
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