Weekly Taxol group
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beauz-
That is quite the tale. I just wanted to tell you, I had a picc line for over a year (due to Lyme disease) and have pretty sensitive skin and there are ways to make your skin less irritated. For example, if the chlorohexadine swabs are too intense/irritating you can try alcohol swabs or iodine. For the dressing there are lots of different ones to try. I found my skin did well with tegaderm HP. Also, when they change your dressing make sure they use the skin protectant barrier. I found having a picc sort of annoying, but not so bad. If you have any other questions about it let me know!
Caroline
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beauz, so sorry to hear, they should have put the piccline right away. Chemo is not good for the veins and piccline is a good option. My veines are bot easy to find and once they stuck me at the vein near my elbow just for a blood test. The place got bruised and hurt for at least three weeks. My piccline has been ok, I hardly notice it anymore, showers are problematic but otherwise it can be removed right away after the treatment and you do not need any surgery for that.
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Cherry, I found taxol can make us very fatigue now I only have few good days that I can run around to do things. I have to push myself for daily walks.
I won’t know what to do without my port, my veins are hard to find, beauz ..... you must be in such a pains 😭😭😭😭
Heading to my 7 taxol infusion, prayers requested! 🙏🙏🙏
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Paulette, good luck with #7 Taxol. You can do this
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Paulette - good luck with #7 sending prayers for an easy infusion and no SE
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Paulette, prayers said, now you're past the halfway way point! Yay! Only 5 left and this time next week it'll be just 4. Which is 2/3 done, hang in, you can do it
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Hope #7 goes smoothly Paulette! You are getting through this! Keep moving, keep moving!
Hugs!
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Paulette, I hope it’s went well. Keep us updated on any new SE issues.
I’m leaning toward being done with chemo given the small amount of difference it would make on my chance of recurrence. My family all seems to agree that I should stop. Still, I wonder if the fear of recurrence ever goes away..
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Another treatment canceled, this time due to increased neuropathy. I’m partially frustrated at yet another delay, but mostly relieved at the break from ever increasing SE’s. They’re also concerned at the redness and blotches on my hands and feet, and I think this weighed onto their decision to cancel. I was given methylprednisolone for that, and while I was afraid of it keeping me up all night, the first night I slept well.
On a positive note, it was only yesterday that my treatment was canceled, I already feel a bit better. The neuropathy is slowly improving already, I’ve accomplished many household tasks and errands, and I cooked! This alone is a miracle. The constant mild nausea means that food has been my enemy. But tonight I made stuffed pepper soup! I’m still amazed at those who gain weight during chemo. I’m 44 pounds down, and I’m having to replace most of my wardrobe. Fun, but pricey!
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msrobin....I'm one of the ones that gained weight during chemo, and I can't stand it. Im up 20 pounds(started at 118 and jumped to 138). Although this past week I started cutting out all treats and only having salads for lunch, I dropped a few pounds. Nurses said on chemo I shouldn't limit myself but I don't want to gain anymore. It has to come off!
My Taxol #7 didn't go as planned. Actually it didn't go at all. My arm is still swollen, where my port is. And the swelling goes up into my neck. I had a ultrasound last Friday and it was normal. I had a CT done Tuesday and it appeared normal but some of the veins were not visualized. So today they sent me for Venogram. That's painful! Conclusion is they don't see any clots but can't find the reason for the swelling so they put me on a blood thinner, Xarelto. Cancelled my chemo and will see how things look next Friday. I was upset but doctor assures me that the most benefit from Taxol is in the first 6 doses and I got those. Planning on picking back up next week!
Hoping you all have better treatments and side effects than me this week !
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Hi ladies,
I got my number 7 down but it wasn’t easy, I got reaction on premeds Yes Premeds not chemo. My heartbeat went up to 103,so I have to rest then I finally took Ativan through IV then I calm down so I went on to taxol.
Brightness - once you make up your mind, do not look back just move forward. All of us have a chance of recurrence maybe the number is better, however how do you know which side of the number are you on? We don’t know, only God can control this.
Ms Robin, sometime having a week off isn’t it a bad idea, give yourself and your body a break. I lost about 8 lbs so far, I make myself eat on the good days, I’m drinking ensure clear and that isn’t bad at all.
Thank you all your prayers, I’m so touched and loved by all of you. ❤️❤️❤️❤️
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Paulette, Ativan was the very first thing they gave me during pre meds because I always started crying hard. I don’t do well with being a patient.
Susie, that sounds scary. I’m sorry you had problems
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CIW and Cherry, thank you for your experiences and suggestions with picc line. I am certainly calmer and more confident in handling my picc line.
Cherry, I am glad to hear you ate chicken livers for lunch. I boiled chicken livers in water with salt and pepper. Then I put them on my toast for breakfast. Before chemo, whenever I ate chicken livers, my stool colour would turn black. But now, my stool colour stays brown.
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PauletTeK- the bubbles on my veins were certainly painful to look at! I never like my premeds. I can feel the premeds shut down my gut and bring me burps.
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Mm… ever increasing SE and delayed treatments, sounds familiar.
Msrobin, hang on to the positive side of the delaying. I can see you recognized plenty positives.
Susie, they'd better find a solution for you soon. Chemo certainly creates a lot of suffering! Thinking of you.♥
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Ditto here ladies on the bloody crusty/ sinus issues!
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Ladies, you're playing my tune: "Delayed Treatments!" So far, I've had to miss three: one due to requiring a blood transfusion, and two because of low WBC counts. My MO's original plan in June was to get me started with radiation by mid-November. Not gonna happen. She told me yesterday that mid-December is more realistic now. Sigh.
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Hershey - how many more do you need to do? Are you doing weekly taxol?
Julz- I use Arya gel few times a day , then I use ocean spray in between. That help me out. I have no more bloody nose now.
Beauz - hang in there you will back to chemo very soon. I really don’t mind premeds since I got so many times already it is just weird how I reacted to it yesterday. I need Ativan before hand now.
Didn’t someone told me her OM told her the first 6 taxol arenthe most important one. I think brightness said that. I passed 6 into 7 now. That’s a milestone I did.
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Paulette, I receive weekly Taxol. Yesterday was #9 for me.
Wishing everyone a peaceful, relaxing weekend.
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So I made it to #12!!!
It was SUPER uneventful. I didn't even ring the bell; I told the nurses that I'd only ring it when I make it to my last Herceptin infusion next year. I did have a long conversation with my MO about steps going forward. She was going to put me on Tamo and Lupron (this is news to me!) when I come back in 3 weeks for my Herceptin. I'm not sure why I'm going to be on Lupron but she said there was a study that showed Tamo works better with Lupron for premenopausal women. Anyone else is doing/going to be doing this regimen? I also get my Echo next week and then a bone density test prior to starting Lupron. Now here's another news to me: At the end of our conversation and she's writing up her report, she clearly states that there is No Evidence of Disease. I asked: you're saying I'm NED? She says: Yes, you're NED. She said that without even putting me through any scans or tests (other than being extremely pleased with all by bloodwork results/tests that she sent out). Is this for real?
Oh and having gone through all 12 Taxol+Herceptin treatments, here's my gist:
Main SE: Putting on close to 25lbs due to STEROIDS. Fatigue hits around #7-#9; I was TIRED out just listening to my husband talk!! I did slow down on my walks and try to rest more. Some heart palpitations that had me worried too around this time but it went away around #10. Some emotional lows around #7-#9 too. Feeling of loss and isolation, etc. Also went away around #10.
Hair/Nail: No cold caps, no icing. Loss 30-40% of hair up til #9. By the 10th treatment, I can see hair growing back where pink bald patches used to be. Eyebrows loss more than 50%, eyelashes maybe 20%, armpits, legs and pubic hair NO CHANGE (WTH, right). Nails had no effect but I keep them moisturized, including cuticle care RELIGIOUSLY. If I missed putting on oil or lotion, the nails/skin do dry out and looked like they're about to peel.
Mouth/Teeth: I use Biotene mouthwash – this keeps my mouth moisturized and I had NO dry issues whatsoever. I had one of my crowns broke; the dentist fix a temporary one after MO gave her OK. So, please watch what you eat and do mind your mouth. This was one area I was bad about – I'd regularly miss flossing just coz I was lazy, etc.
If I could give my 2cents, I'd say if you HAVE to go through this, keep yourself hydrated and active. And you have got to eat. I hate the fact that I'm 25lbs heavier and that I'd probably gain more when I start Lupron and Tamo, but I am thankful that that is the worst SE I had. I'll work with a dietician and trainer to help me get back to a reasonable weight and stay that way through the next round.
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Hi All!,
Hope everyone’s treatment went well this week. Would like to thank everyone who chimed in on my hair loss inquiry. Had treatment # 4 Thursday and just as many stated seems like 4 was/is the “lucky” number. Starting to experience a lot of shedding. Just noticed earlier today. Oh well, hair grows back! Everyone have an awesome weekend! Hugs to you all!
Aneesah
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HersheyKiss - here's another one with very low blood counts. Chemo was delayed twice in a row because of low wbc counts. I need a seat belt to help me stay on this wobbly chemo wagon. Go steady! You a nearly there.
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salasila- congratulations on finishing your taxol. Best wishes for your next round!
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Aneesa, hang in there! I think the shedding can be traumatic. Play around with headscarves, once you practice a few times, it gets easier. YouTube has tutorials on any size scarf you might have.
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Salasila - congratulations!! Sound like your SE is doable, didn’t see you mention any numbness on hand or feet, no rashes also.
Aneesa - most of us cried when we have to buzz our hair 😥😥😥
Hershey - good for you, soon you can see the end of the tunnel.
Beauz - I’m with you, don’t worry.
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Hi everyone,
Thanks for all the good information. I have one more AC and I will be starting 12 weekly taxol. I had a horrible time with nausea during AC and hoping the taxol won!t be so harsh. I was just wondering if you do have any good days during the week? If so when were your good days. With AC I tried to plan my work days around my good days, but not sure what to expect with Taxol. Also I had Nelasta pro shots during AC will that continue with taxol?
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DKK- everyone reacts differently from Taxol so I am just posting my experience regarding good days. My best days were Wednesday (day of infusion), Thursday (even though it was hard to sleep Wednesday night due to premeds), mist of Friday. The first 6 weeks of Taxol, I had bone pain starting Friday evening/night which Aleve handled. When bone pain was handled after a few weeks, and was dealing with mouth sores and The drying affects of Taxol. By week 10. I had dark spots under my nails and pain in fingers with slight neuropathy. Not everyone gets the dark spots under nails but a lot of people do get some version of neuropathy and/or drying of skin and mucouses from Taxol.
Overall, Taxol was easier to do then AC but because it was weekly for 12 weeks, I missed having a week off between treatments.
Now that I am 2 months beyond chemo, I have to really stop to think about what it was like. My minds doesn't think about the "bad" times, it just moves me forward.
Good luck. Hope you have minimal SE
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DKK,
Wish you minimal SE. I believe no Neulasta shot w wkly taxol.
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DKK... I found I'm able to work with the Taxol with no "good day/bad day" issues like A/C.
I have infusions on Tuesday. My neuropathy is a little more prounounced on Sat/Sun/Mon. Fatigue is pretty consistent regardless of the day... those days I'm going more, I'm more tired.
For me, definitely better than A/C
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DKK, my first four weeks of taxol was good, only have day 4 and 5 were bad days, no appetite with little fatigue. Taxol 5, nose dried got so bad I had nose bleed then numbness on fingertips and feet started. By taxol 7 more fatigues I need nap most of the afternoon. My taxol 8 is coming up then I will let you know how I feel.
I found the 12 weeks is long, my emotional hit bottom easily.
One more thing, I got rashes on hands they always pop up on day 4. Also I have reaction during infusion so my infusion time is 5.5 hours long. Taxol also affects to our heartbeats, many of us found our heartbeat goes faster also affects to our BP.
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