Weekly Taxol group
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Astarte,
So sorry that the thread leaves you with that impression regarding decadron. With weekly taxol, I took 3 - 4mg tablets prior to the chemo. (Also Claritin 10mg & Zantac).
I don't recall having sleep issues. I had Lorazepam .5 mg to take for help with sleep that night & I could take 2.
My biggest issue with Taxol was weight gain and was definitely a byproduct of the Taxol and my body adjusting to the chemopause it was thrown into with AC. I gained weight even while running 30 miles per week. I'm not going to lie - after having an easy time with AC and maintaining my running and weight through it, the weight gain was the worst part of Taxol for me.
But ... it passed. That's the important thing to remember - you will get through this. It's good to read the forums and get an idea, but know that your experience wi be your experience.
Also, I want to add that there are posters that have posted and do post on this thread who are not on weekly taxol. Some are taking dose dense Taxol but joined because they saw a Taxol thread. There are others who are on continuous Taxol due to a diagnosis of stage iv. Neither of those experiences equates to yours if you're on the 12 weekly taxol plan.
Hope that your experience has the best outcome!
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Thanks dltnhm, I've been reading nothing but horror stories all day. My doc did prescribe lorazapam for later. I believe I'll be doing once a week paclitaxel for 12 weeks, then AC for 4 cycles, then surgery, followed by radiation. Have a great evening, you helped ease my fears a bit.
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I'm thankful that it helped! You hang in there.
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Astarte, I've taken decadron after AC and before the wkly taxol. It has zero effect on me. I don't get hyper at all which was what oThers were telling me. Everybody is different
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I was on taxol for 11 months - regarding the nail polish color, just dark. The idea is to block the light. For some reason the light makes the nails darken. I used a nail strengthener as a base. Never had one bit of problem with the nails. Good luck.
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Thanks SyrMom! I have bought a grey color and nail strenghthener to use as the base.
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Hi all, I just started weekly Taxol on Monday. No problems with the infusion and so far sides have been minimal. 11 weeks to go combined with Herceptin/Perjeta every 3 weeks. Managed to do a slow circuit at Curves this morning. I am 71 so doing well I think. I have found that for me, reading the really bad sides some have is not helpful. All it does is make me more anxious. Just because there is a possibility of a side effect doesn't mean I will get it. We each have our own journey and I am trying to take things one day at a time. Love, Jean
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Started crying at chemo today. Room was full, so I had a non chemo chair. Legs were worse than usual during chemo of course. I was already stressed over cancer and chemo and life stuff. Just started crying and took a while to stop. I am one of those people who don't like crying in front of people, so that made it worse. Better now, but shaky and tired.
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oh hugs missingmerc, hope u feel better. We're allowed to feel crappy sometimes. Have had plenty of those.
I'm going in for tax6 tomorrow . Am feeling tired already.
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Missingmerc,I've cried during chemo too. You're not alone and I hate it when it happens. I too have to go into a large room with many other people. I am embarrassed because I see people in there who are at that moment being so much braver and stronger then me.
Yesterday was so bad I passed out from anxiety (not chemo, I've been doing fine with the Taxol weekly actually). Came to with 5 nurse gathered round.
I think that sometimes we and the staff at the chemo clinics too, at times forget that we walk into these clinics not as compartmentalized boxes, but people who bring with them the stress of all the other issues that come with cancer.
Family, finances, insurance, fear of the unknown, pain and side effects of the treatments we've had and yet have to overcome, coping with the new "normal" that cancer brings with it. The long slog, not knowing if the cancer will come back or not. Some days it becomes unbearable.
In general I think we do have access to very good cancer care in the U.S. BUT the tendency is to 'box' us into the moment, the treatments we are having right now. I don't cry because I'm afraid of the needle stick, I cry because of ALL that it represents and the Doctors and the nurse sometimes don't get that. I think sometimes the stress will do me in before the cancer will.
But fight on and hanging in there we must do.
Best to you missingmerc and please, you're not the only one who feels the feelings you have.
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I was definitely stressed over other stuff. Plus, my daughter handed me her cell phone to talk to my ex right before. That is always stressful. The nurses had someone call me the next day. I'm still stressed, but nothing has really changed. At least some of it got relieved.
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so glad I found this post!
I did two rounds of taxotere/cytoxen . Had a horrible burn reaction to it. Today MO switched me to 12 weeks of taxol.
He said SE should be minimal except possible neuropathy. I will ask about the powder . Good news is no more neulasta shot.
I will back read about SE. I have used tea tree oil for nails and then hard as nails. No issue so far. My MO said clear Polish is fine, just a thought
Weight gain ? Oh no? Water retention you think?
I am 53, triple neg, can't do red devil adriamyacin due to heart issues. Have a great DH, twin boys away at college. Work full time as CEO of non profit. Staff does not know. Wig works, but I don't love wearing it. Cotton caps under it help
Jean.....so glad to see you here! Continued prayers. God is good.....my mantra
Thanks for all your insight and tips. Hopefully 12weeks will fly by. I did not get tired the other tx...this time the benedryl made me sleep in the chair, and for 3 hours when I got home
Blessings and hugs,
Kath
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kath, I'll be starting my 12 weeks of taxol next fri. I'll be looking for your experiences as I go along. Good luck
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does anybody have a sore tongue while on taxol? I had it on A/C too, but there was time to recover in between infusions. It hurts - yuck
Nancy
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My tongue has felt kinda like I burned it. Nothing too terrible. Palms of my hands very sensitive to heat, tingly, pins and needles feeling. This started in the middle of A/C treatment. Again not terrible, just a bit annoying. My feeling is ..... annoying vs my life-no contest! Grateful for the researchers and the brave participants in the clinical trials that made these drugs possible. Love, Jean
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thanks Jean-yes, it's not that bad, but it does hurt. Just like I burned it. I will take that over feeling sick for sure.
Nancy
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Nancy and Jean, mouth any better? I actually fell asleep in chair from benedryl yesterday. I think they increased it went to lunch with DH, then fell asleep for 4 hours. Nausea, but Zofran helps. Headache, weak legs which is weird. In the scheme of things, all good
Hugs and prayers to all
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doggie bites and missing mercury....thanks for sharing. I sure hope you both are having a good day
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I have number 6 on Monday, then 3 weeks off. I think I need it, I have no energy, no matter how much I rest. My body needs some time off. I hope I feel better after the break. Wilsi
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UGH!!!! Here's my life on weekly Taxol. I have had 3/12 TXs so far and I want to see if anyone can mimic my life:
- Tuesday - Infusion day w/Zofran & Benadryl - just a bit whoozy from the Benadryl
- Wednesday - SUPERWOMAN!! Can leap tall buildings in a single bound. I rode my stationary bike for 30 minutes and felt awesome. Ate well and drank well.
- Thursday - plastered to the couch sleeping intermittently - not eating or drinking
- Friday - pretty much of the same
- Saturday - pretty much of the same
Sunday - now realize I might be dehydrated so drinking up a storm but still feeling very weak. The fatigue is profound and I also have a shortness of breath. Coming down the stairs to go to the kitchen to make a morning cup of coffee, I need to lean on the counter because I can't catch my breath. Getting off the couch to go to the bathroom and again, shortness of breath.
The thought of surviving this through 8 more TXs is not very appealing!!! Any suggestions on boosting my energy level? I will have a discussion with MO at Tuesday's appt.
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CJT .. I had 11 months of taxol & that describes pretty much how I felt each week ... I was 3 weeks on & 1 week off. Any shortness of breath should still be reported and checked out.
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oh CJ, that is not good friend!! Is it always this way? First 2 also? Can you not drink on the down days due to nausea? I had two taxotere/cytoxen tx and had a third degree burn in hands and feet. That was fun!
MO said no more so I just had first taxol Friday. I work full time, and I have to......so am praying a lot
The Zofran helps a lot, forcing myself to drink and eat. Is it metal mouth? A friend have me a "magic bean". ...look it up. Not sure if they grow where you are, but it is from a bugs and is red. A tiny bite takes the taste away. She is a cop, and grows it for friends with the big C
Are your legs weak? Have you asked about taking b6 or b 12?
Sending you prayers and hugs. I hope someone here has some better answers for you
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I have no issues with nausea at all. I think because I'm always sleeping and I have absolutely no desire to eat or drink may have alot to do with it. Will have a nice talk with MO on Tuesday. I need a better approach if I'm going to survive 8 more treatments!! I do want to ask about B6 & B12 supplements to see if that will help. Thanks for the support everyone.
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hope you feel better CJT511. I also have 8 more taxol treatments to go.
Nancy
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does everyone here have a port? I don't, wondering if that is bad? My veins set good so far
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Tony not everyone needs a port. Depends on various things such as the condition of your veinz, how many infusions you will get total, lymph node surgery and personal choice. Love, Jean
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I've been done with Taxol for 4 months and I've had terrible joint pain since I've been finished with it. Has this happened to anyone? Does it ever go away? The pain meds they give me don't even touch the pain
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Hi all- sorry I went missing. :-) I want to address a few things I read on the last 20 or so comments, but I don't have the energy or brain to go back and gather everyone's usernames.
FYI – I had 12 weekly Taxols, and move to FAC five weeks ago. I was absolutely miserable on Taxol, and while FAC isn't what I'd call fun, I'd take it a million times over Taxol again!Nail polish – I agree with those that said it's fine if it's very dark. It's just a matter of keeping light off your nails, so the darker the better. I painted my black and my nails stayed superhealthy. Make sure though, if you take the polish off you put it right back on, because even a little bit of light could make them feel a little painful. For those who haven't started painting their nails yet and are wondering if they should, my opinion is it certainly won't hurt and it could definitely help keeping any more light from getting in.
Painful mouth or weird tasting food– definitely hold ice in your mouth while you're getting the taxol! It made all the difference in the world for me. So far, it's also kept me from having problems on FAC too so hopefully that will continue.
Muscle and joint pains – for me, worse in the first six weeks and lessened during the last half of taxol though would still come and go. Ibuprofen and a good muscle relief cream helped.
Hair – I started with taxol and was completely bald in about 3 to 4 weeks. I actually cut my hair off and donated it when I realized it was falling out because my doctor had told me there was absolutely no way I'd be able to keep it anyway! On FAC I've started to get all the fuzz on my head but I continue to shave, as I have no need for fuzz!
Dry throat and cough – I've had a persistent cough since I started Taxol. It is slowly improving, but whoever mentioned it – I feel your pain! I still have coughing fits and the constant tickle/scratchy throat, though they ARE getting better. The only two things I found give a little relief are pieces of spry brand gum (The xylitol in it helps. I also had the mouth spray but the gum does a better job keeping me from coughing and giving me some moisture). The other thing is a dry throat tea. It tastes really nice too. http://www.amazon.com/Traditional-Medicinals-Organ...=sr_1_3?ie=UTF8&qid=1415615191&sr=8-3&keywords=Dry+throat+Tea
Lightheadedness – this is a big big big one for me because it essentially renders you useless in trying to be active at all. I have to stop and steady myself to make sure I'm not going to faint at least 10 times a day. It is infuriating and has not improved. It's apparently a side effect I would have on any chemo, so I've accepted it will probably be with me until I'm done with FAC.
Weight- I lost 8 pounds through Taxol and have continued to lose through FAC. It might be due to the fact my doctor doesn't give steroids with chemo? I also have had to force myself to have an appetite. Even though I wasn't nauseous on Taxol I still didn't want to eat.
Timing – as I think we all know, Taxol is cumulative, so it gets harder and harder. I wish I could say it doesn't. However, please keep in mind though, I am someone who was much more miserable on Taxol than is the norm!! I hit a wall about week 8 and cried every single time I laid down in the bed for them to hook me up to those bags. Those last weeks were pure survival mode. Missingmerc- if my chemo brain is letting me remember correctly, you are in that home stretch, right? I want you to know I broke down and cried too during this last weeks. I wanted to run away and not show up for chemo every single time. Hang in there. It will be over soon and even though it's a tiny amount you, will feel Taxol leaving your body every day, and those feelings alone will make you happy! I really feel a big difference now that I'm almost to six weeks out of Taxol.
There is good news. Taxol is overwhelmingly effective for breast cancer. I had over 83% reduction of tumor size with those treatments. So, even though my side effects were above average my results were above average as well. Thank goodness it at least did itsjob!! Also, I'm almost 6 weeks out of Taxol and while The FAC treatments every three weeks certainly knock me to the floor for a few days, when I'm able to get back up I feel pretty good and definitely notice every single day I get farther away from Taxol I feel better. It is a slow improvement, but I've noticed the neuropathy, joint and muscle aches, blurry vision, hearing issues and feeling like I had a constant hangover are almost gone. The extreme lightheadedness continues, which is frustrating (especially since I'm feeling more energetic every day I move away from Taxol), but given the other improvements I am not complaining!
Anyway – hope that helps – my body is finally feeling like it might be ready for bed now that it's 5 AM! Unlike some of you who seem to be able to take these awesome naps during the day, I've had a terrible time sleeping and getting rest through chemo! :-(
xoxoxo
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texas94 thank you for taking the time to post this especially the part about the throat and cough. I have only had 4 treatments of taxol so I have a while to go. I have a slight cough sometimes and was wondering if I should be concerned. The muscles in my neck are sore whenever I move a certain way. My tongue hurts too. I had AC chemo before this every three weeks. Even though I felt sick a couple of days I was able to recover and feel pretty good. With weekly taxol you just don't get that chance to recover
Nancy
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Nancy – I completely agree the biggest problem with Taxol is it doesn't give you a break. I tell people it's the difference between having a constant hangover for three months, or taking medication every three weeks that knocks you down and gives you the flu for 2 to 3 days. To me, it's a no-brainer I'd rather have the latter!
It makes me crazy when I hear someone tell a patient Taxol is the "easy chemo." Not only do they have no idea how this person will react to Taxol, but I think it's mean to tell someone a cumulative drug is easy, because then the first few weeks the patient thinks it's not as bad as they thought! ESPECIALLY if the patient does the more normal protocol of starting with FAC or AC first, because they're used to the cycle of "Get chemo, feel horribly sick, then feel pretty good for a couple of weeks."
Remember a lot of women DO find Taxol fairly easy, so obviously a lot of women do very well with it, and you may very well be one of them. My best advice is to hang in there and don't lose sight of that light at the end of the tunnel. Remind yourself every single day Taxol is very, very effective when it comes to killing cancer!
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