Weekly Taxol group
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Hi everyone. Haven't posted in a while as I am still waiting for Taxol to restart. Have my 5th Pico vac dressing on and seeing BCN tomorrow morning. Am hoping and praying wound will be healed and Taxol will begin again next week. Just want to get back to it and get the ten cycles left over and done with. Hope everyone is coping well with their journey. Sending love and hugs to all 😘💖😘💖💕💕0
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TonyaBerryman-
So sorry to read what you're going through. I'm praying that a modified treatment regimen can be found that is effective while being tolerable.
I became so sick after my third AC treatment and passed out later that night. My blood pressure was also extremely low. My MO said I was extremely dehydrated, and I went in four days in a row for fluids. My MO also cancelled the fourth AC treatment because of how I had reacted to it. Has your doctor discussed the possibility of cutting back on the dose of Taxol you're receiving? Trust in yourself and in the Lord. You know your body better than your doctor.
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DodgersGirl -
I just noticed that our diagnosis and treatment are identical although I'm about a month ahead of you in treatment. I had my 8/12 Taxol treatment yesterday. I have felt so weak and nauseous since starting AC + Taxol among other problems that I rarely go out. I, too, was bothered by dry and cracked nostrils. I starting using fractionated (liquid) coconut oil in my nose and on the sores on my lips, tongue and gums, on my discolored nails, and as a general moisturizer. It works great! I see marked improvement overnight. Have you ever talked to your MO about reducing the dose to see if that alleviates some of your SEs? My liver enzymes are significantly elevated, I skipped a treatment two weeks ago and saw a significant drop in levels. Then after only one more treatment the AST level was up 11 points and the ALT up 17 points. So, it's obvious that Taxol is causing this. I would like to try cutting back on my dose to see if that would help instead of skipping treatments. Have you or any of you other gals cut back on your dose?
Thanks!
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DonnaJoan- Taxol 5 is tomorrow. Taking Aleve this week really knocked the joint/bone pain down. Still have the stuffy dry nose which makes me feel like I can't breath thru my nose... really dislike it. I use Ocean saline spray and Ayr Gel to soothe the inside of nose helps for a while. I suck on ACt moisturizing drops to keep mouth moist.
I am using the fractionated coconut oil on my nails and bald head. May try applying to my dried out lips. Thanks for that idea!
I realized tonight that the only "good" days since last Taxol were the days I was riding the pre-meds. Sigh.
But when the MO says she can't feel the tumor, I say keep moving forward.
When I started Taxol I asked MO about lowering dosage or treatment numbers if SE get bad. She explained to me that to get the results she said expects from Taxol I need to complete 80% of what is planned and to really shoot for 100% which she backed up with case studies so I made my mind up to shoot for 12 treatments and deal with SE. Now that doesn't mean something won't happen and you have to postpone a treatment or cut dosage but I am really trying to get in all 12
I think this week I have been really tired, wanting to nap during the day so next week, I may take a longer lunch at the work ( I am very blessed to work from home for a small company who said my health is more important can a full work day) and try a power nap
So far my liver numbers have been fine. I expected them to raise. I do take a liver supplement so maybe that is helping my numbers?
As you are a few Taxols ahead of me, please keep posting your experiences!!
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DonnaJoan, my MO cut back my Taxol doseage, also steroid doseage. And I've had two breaks so far, between 3&4 and between 6&7. Maybe another break this week (supposed to 10), haven't decided yet. MO doesn't even care if I quit, but I hate to quit.
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sitting in the infusion chair about to start Taxol
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Thanks for the feedback, Ladies! I misspoke in my last post. I've only had 7 treatments. I forgot I had skipped one - chemo brain! The good news is that my last tumor markers are all in the normal range!!! I would love to use this information to cut back on treatments, but considering I'm a Stage 3C I'm afraid to do that even if my MO agreed.
bareclaws, I've been getting 140 mg of Taxol but plan to ask my MO if he could cut it back to 120 mg because of my high AST and ALT levels. Does this sound reasonable to you based on your experience?
Thanks!
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Getting ready for taxol #5! Bloodwork all good, maybe get to skip next weeks blood test since we are at the lake next week. No MO visit for 3 weeks. Update latrr tonight
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DonnaJoan, I only can tell you that she cut mine back by 20%. We all start at a dosage based on our weight.
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Hi, all. I have my last Taxol/Herceptin on Monday! July 4 will truly be Independence Day for me. I started out at about 146 mg Taxol, but after 4 treatments I had to take a week off and cut it back to about 126 mg. That helped me make it through the next 5 treatments. I then needed to take another week off and have dropped down to 100 mg for the last three treatments. I just couldn't take the SEs. I'm soooo glad to be almost done. Taking a week off made a huge difference for me; it's something y'all might consider if your SEs are getting unbearable.
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Taxol #5 in the books! No effects during infusion, my port cooperated and gave blood return almost right away, so things got started right away. Hubby picked me up after, ran some errands, stopped at Texas Roadhouse for supper. Took my claritin, started the stool softeners, hope I can sleep tonight. Have a busy couple of days, grandson 3rd birthday, Dad's 86th birthday, and then holiday weekend at the lake. Took the leap and shaved my hair, the top had gotten so thin I couldnt style it, still had stuff on side and back. Also I color it, so it had gotten so faded and gray. I couldn't stand it, and realized that my wig didn't fit right with the hair, so off it came. My wig matches my hair color and I had it cut same style. Was out with friends on Monday and spent last evening with my Bunco Babes, no one even questioned me. My hubby said it looks better than your real hair did! Anyway, I am ok with it, it will grow back. Praying for a good week!
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Taxol #9 earlier today. The end is in sight. My nose is getting more congested and I'm more fatigued now than I was at the star of Taxol. Not a surprise as since I finished AC my white cell count is slowly dropping and no Neulasta to help. Also hoping I can sleep tonight after the Decadron.
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Sounds like many of us tolerate Taxol for the most part.
I am on my off week, but had dose #9 last week and my hair has thinned a lot, my blood work has been really good, but the white counts have dropped as well as my platelets, fatigue and body aches have been my issues, but compared to what it could be I won't complain. My tumor markers have been going down.
How many of you have dryness in your throat or chest? I do and was told Taxol can do that, as well as cause runny nose, which my nose has started to do.How long does your MO plan to keep you on Taxol?
I am head to MD Anderson after dose 12 and will learn so much more.0 -
Bmac16- Taxol 5 yesterday. Decadron won in the race to sleep all night. Woke up at 130 am wide awake. Gave into not sleeping at 230 am and got out of bed.
You mentioned WBC. How low is yours after Taxol 9? Mine is slowly falling, too, with each weekly Taxol. No one is worried about it at this point. So I will try to be the same for now.
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Had sleeping issues last night at well, finally dozed from 330 to 6. My WBC is slowly falling also, 3.8 this week, MO said everything looks fine, liver enzymes slightly up last week, but normal this week. With the holiday next week they said I could skip my weekly blood work and just get it done the next week. We are going to be at the lake til Wednesday and will go right to infusion in the afternoon, so I won't have to go early for bloodwork. I am taking that as a good sign, also don't see MO for 3 weeks.
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Hello,
I just found out my tumor grew while on taxol. Has anyone else had this happen? Did it shrink with A/C?
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DonnaJoan -
I haven't seen my MO since all this has happened, I have an appointment to see her tomorrow and hoping to move forward with my treatments. I just want to get this going and get finished.
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DodgersGirl
When I started weekly Taxol my white cells were 8.8 at the high end of normal after the Neulasta with the AC.
Yesterday they were at 4.1 so still within the normal range but approaching low end.
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bmac16- I was feeling bad because my WBC dropped to 5.3 this week but sounds like everyone's numbers are slowly dripp
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Taxol number nine is done. Three fourths of the way done. My numbers are holding. Tingling in my fingers and toes, but it comes and goes, so I'm hoping that's a good sign. I had another echo today. The first one was not as good as I would have expected. But that one was just three weeks after my surgery and I wasn't able to get my arm above my head or lay on my left side. This time I could get inthe correct position, hoping that will be a better result.
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Dodgers Gal - What liver supplements are you taking? I'm alarmed by my rising levels and will try anything so as not to skip treatments.
I just wanted to let those of you having trouble sleeping after the Decadron that you should ask your MO to cut back on the dose or cut it out completely. I'm not sure what the benefits are, but it was impossible for me to sleep the night after the AC treatments which made feeling miserable even worse! After cutting the dose in half and seeing little change, my MO agreed to cut it out completely. It was wonderful to be able to sleep!
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Who experiences dryness in their chest and throat? Kinda like the burn you get after a good run in the cold weather.
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Helenfaith did you try a Zantac or some heartburn reliever? I had minor heartburn a few times with taxol and that helped immediately. I also got Pepcid in my pre-chemo meds. Not sure if it is the same feeling you have though. Taxol is very drying.
I'm done with chemo but my WBC count dropped every week with taxol. It was in normal range when I finished AC due to neulasta. WBC dropped to 2.8 but neutrophils were really what my MO was watching. Once those dropped below 1 and I had to postpone treatment #11 for a week and give myself neupogen shots.
I would ask about dropping the steroid if you have not had an allergic reaction. My MO dropped it after my 3rd treatment. That was nice, one less drug and I could actually sleep.
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Legomaster2,
Hmmm.......never thought about heartburn. I had it with a couple of pregnancies, but this feels different. Can heartburn make you feel like you have a runners chest? I don't know your experience with running, but that is all I can relate it to. I appreciate your comment and will explore heartburn.0 -
I had my first Taxol today. 11 more to go
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Helen, I am familiar with runners chest. I ran track in college and live in Michigan so get the cold air burning in the lungs as well. No issues with hearttburn with my kids though.
Definitely bring it up with your doctor. My infusion nurse told me that the reason they give Pepcid with the prechemo mds was because taxol can cause esopogeal spasms. Definitely talk to your MO. I'm not sure if Zantac will help you but it's worth a shot. It helped me the few times I had mild issues.
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Legomaster2, Michigan? Oh boy, do you know what I am talking about......brrr.
Thank you! I will talk to my doc on Thursday before my infusion. I am not getting Pepcid before chemo, but I am going to ask about it. I am on my off week, but go back on Thursday for session #10. This symptom started over the last 2 weeks and comes and goes, but has been sticking around the last couple of days. I may go talk to the pharmacist and get some Zantac or Pepcid and see if it helps.
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TWG,
How are you feeling?0 -
HelenFaith- I do get Pepcid in my pre-meds for Taxol
My dryness issues are in my sinuses but I do feel the burn like a cold winter's deep breath. I was thinking about trying that handheld My Pure Mist to see if humid air would soothe my sinuses
Keep us posted with what you find! Thanks!
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I took Nexium the whole time I did Taxol. I realized that I really wasn't nauseated, just having some acid reflux. Pepsid may provide the same relief. Herceptin can also cause shortness of breath. In fact, my MO moved up my echo and ordered a chest x ray when I complained about that.
Wishing everyone a calm holiday weekend.
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