Weekly Taxol group
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I shaved my head after it started coming out on AC, so not sure how much I actually "lost". Nothing grew until about my 2nd taxol(dose dense, every other week). It was no more than stubble for a while, but by the end of the eight weeks it was a nice buzz. Last treatment was Nov 2 and I've just had the back cut so I don't look like I'm sporting a mullet! You can Google images of cancer treatment re-growth timeline. Lots of women have posted timeline pics. Eyebows and lashes hung on til the end, then fell out about 3 weeks after treatment. Ugh! Luckily they started coming in as soon as they left. Only without them about 3 weeks. As for body hair...I looked like a 2nd grader everywhere else by taxol #2. And of course chin hairs came back first!
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Thanks, Vslush. I had a little excitement this morning. It took them three sticks to get the IV in and I ended up. . . fainting. ::eyeroll:: It’s a thing I have done in the past but not for years. No fallout—I was reclined in a chair—but it sure caused a ruckus around here!!
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Ingerp, my hair started coming out a little at week 4 and by week 6 it was in full retreat! I had only been brushing it out but then I cut it with scissors and had a funny old man comb-over with a fringe of hair around the sides and back. We finally buzzed it all to a very short length. My eyebrows and eyelashes came out a few weeks after my last taxol but started to regrow pretty quickly. The eyelashes are not long yet but I'm hopeful they will get longer. My hair is slowly growing back. Slooooooowly. It looks black with a gray patch like Cruella Deville, lol. My hair before was dark blond/light brown. I don't care what color it is, just grow! I'm 11 weeks out.
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Thanks, MT. I am curious what the first hair will look like.
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Hello ladies! Well, I finished my weekly taxols on June 6th. Now have been in the hospital since Wednesday night with pneumonitis and couldn't breathe. This was caused by the taxol and is rare - my oncologist said only about 1% of people get this. Have been on oxygen, high dose steroids every 8 hours, high dose antibiotics every 8 and 12 hours, had chest CT and this morning a bronchoscopy that did not go well at all. He couldn't numb my throat because I'm allergic to lidocaine, so he offered extra sedation. The sedation didn't work and when they put the tube down my throat, my throat spasmed closed and I couldn't breathe. He said that my stats dropped low and he had to stop. So he was only able to check one lung, but said he got what he needed. What a roller coaster! I feel better since I've been here, but they said I'll probably be here through the weekend and maybe even Monday. They want to keep me until they rule out all infections before sending me home. Will most likely continue steroids at home and oxygen if needed.
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Wow Paisley, what a tough break! Sucks you had to get the weird rare side effect
Did you have any symptoms while you were still receiving taxol or did it all start after?
Hope the steroids kick in for you & get to finish recovering at home soon. I read that high dose steroids seem to reverse it effectively.0 -
Hey Moth, I had side effects for the last 8 weeks. I complained about shortness of breath every week I went in for chemo. Plus, I was on steroids from Wednesday's through Saturday's to help with chemo side effects. Every week on Sunday when I went off the steroids, I'd run a fever through the next Wednesday. Once I got my steroids again, the fever would go away and the whole cycle would repeat from week to week. I Lso told my doc and nurses about this. Every week got progressively worse and about 4 weeks ago I developed a dry cough as well. I had been sent for chest Ct, and X-rays and they were always clear. Every time they would listen to me breathe, I sounded clear - though I felt like I could only fill about half my lungs. Finally had a pet scan last week and it showed inflammation in my lungs. Fever also went up to 102.1 this week. Highest ever. I couldn't go from my bed to the bathroom without getting completely out of breath and coughing. So, here I am. I just hope no scarring or permanent damage was done since it went on for so long without being diagnosed. I saw a pulmonologist here at the hospital, and he thinks it will heal completely, so that's good.
On a side note of encouragement to those of you still doing taxol, I had my most recent pet scan to check for bone metastasis. I had a bone scan show suspicion for metastasis on two ribs and my skull. The pet scan came back clear. And I mean COMPLETELY clear - no cancer anywhere. Not even in my breasts anymore. The AC and taxol worked! I had cancer in both breasts and a large tumor in my left -7cm. All gone. I know the side effects are hard - believe me, I know! But it is all worth it. I still have to do my double mastectomy and possibly radiation, but at the moment I can say I'm actually cancer free and it feels great. It gave me pneumonitis, but the cancer is all gone! Good luck to all of you ladies with your taxol treatments and hang in there, we can do this and will get through it!
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Just finished 6 of 12!! Half way there! I had my son buzz cut my hair today when I got home..not much left. I had it cut to a very short pixie before chemo, but it started looking patchy. I am having feet pain and tingly. I have to keep moving my legs for it to go away. Between that and hot flashes, I am not getting much sleep. I miss sleep... I also have stomach cramps, no diarrhea. Getting my H2O in today! Hope everyone has a great weekend!
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SAW—I did a 1” buzz about a week and a half ago, but I think I’m looking silly enough that I need to take it down to super short today. I guess I start playing with hats/scarves
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Had my first visit with oncologist yesterday. Treatment plan - Paclitaxel once weekly for 12 weeks. Herceptin every 21 days for 1 year. Have to have a heart scan(?) first then get a port. Any advice you could offer would be most appreciated!
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That's the same regimen lots of us are on. You'll probably have your heart and bones scanned to get a baseline. My MO preferred I try it without a port and so far it's been fine.
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Thank you Ingerp. Any side effects??
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- hi all. Thank you all for your kind words, thoughts and time taken for encouragement. I’m still down in the dumps. Neourapathy here to stay, mostly numbness and skin peeling on feet and hands. Gabapentin might be helping but don’t think so.
- Happy to read all the updates and newbies. Well newbies you know what I mean. Sorry we all met here. But thank God we have each other.
- Yeah for clear bone scan and no more taxols.
- Well just dropped by to say hi. Tomorrow taxol and then 1 more THP and 2 only taxol left.
- Gonna go look back on what helps with numbness cause it’s making me nuts.
- Oh yes my hair is growing back, not sure if I mentioned it. It’s gray, looks like black behind it.They say to shave it but heck no way am I
- Anyone get blisters around your eyes ? It hurts so bad I can’t hardly open my eyes. Blisters and my entire eye all around eyelid is like raw meat and burns like heck.
- Ugh
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1stronglady--I gotta say hardly any noticeable SEs at all (well--except for the hair!). I am starting to get a little tired (I've done 5; 7 to go), and I'm fortunate to work from home so these days I put my feet up for 20-30 minutes at lunch and that seems to do the trick. I do think it helps to keep busy/distracted.
Idkidk--so sorry you're having a rough time! I hope things start to resolve as you near the finish line.
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Thank you Ingerp! I hope I do as well as you have!!
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People kept telling me before I started that it's a lot about attitude. You have got this!!
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Hey! I am growing hair! Today is exactly 4 weeks after my 12th and last Taxol. Over the weekend my husband noticed the back of my head looked darker.
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Ooooo—great news, Stubborn! I'll cross my fingers I'm on a similar timeline. That would have megetting some hair back around Labor Day. Thanks so much for checking in. :-)
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fingers crossed for you, lngerp! Labor Day will be here before you know it! Summer is a great time to be hairless....if I onl had the guts to go out in public that way. I am addicted to my wig!
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idkidk- I am so sorry about the blisters. Hopefully something can be done about that. Your almost there!
1stronglady- I am having the same treatment. I have done 6/12.I had a port put in, was sore for about 2 weeks. But I am glad I got it. They can never find my veins and this just make it so much easier. My SE's are tolerable. Tiredness, leg aches, some feet pain. I do have stomach cramps daily that comes and go. Oh and hair loss..
stubborndog- like ingerp its good to know that hopefully by labor day my hair will be coming in!
Today I went out for the first time wearing a beanie. It was harder than I thought. I have been wearing ball caps and nobody really notices, but those beanies make people take notice. I didn't get a wig, but the thought did go through my head that maybe I should have. But, I'll be fine.
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Thank you saw66!
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Hi 1stronglady - Welcome to the place none of us wants to be. Your chemo plan is pretty standard for triple positive ladies. Unlike Inger, I had a port and was glad. Got my blood draws from it too. And they will do that before every infusion. Some doctors do it a day ahead but my center did it before they started the infusion. Took a little longer that way but saved me another trip. I had my port put in the same day I had my first echo. If you are getting a port, make certain that you have it put in at least a week before they start the chemo. It needs time to heal. The echo is pretty standard too. Herceptin can be hard on the heart. Usually echos are ordered every 3 months. Because I am over 70, MO assumed I had had dex scans so I didn't have one until fairly far along in the process. It's the AI's or tamoxifilin that is hard on the bones.
Whether you get your blood work done the day before or not, plan that you will be at the chemo center about 4 hours. In addition to the taxol (which for most of us is an hour, the herceptin takes another 30 minutes and there are 30-50 minutes of cocktails before they start - usually an anti-nausea drug, a steroid, benedryl (I can't remember the 4 one I got but there were 4 10 minute bags of stuff.) You will see MO or PA each time etc.
If you are offered a tour of the chemo center, I urge you to take it. Some centers are pretty plush - private rooms etc. I have a friend whose friends always brought her a picnic in her room. Some places provide lunch or healthy snacks. Others are pretty open - makes it easier for nurses to keep an eye on folks but it's pretty public. Mine was the latter. I was fine with that except that had the TV on all the time - I can flip a house now with the best of them. Comfortable reclining chairs for patients, but uncomfortable ones for anyone who comes with you. There was coffee and tea and a vending machine. I always took water and a snack. Some folks bring a favorite pillow or blanket. Take a sweater or zip-up sweat shirt. I think almost everywhere has a good wi-fi system now but you may want to check on that too. Take a kindle or your iPad or laptop. Does your center encourage or support cold capping (there is a separate thread on that here)? Do you want to do it?
Taxol is considered by some to be "chemo lite" and it is my observation that most of us have fewer SE's than with other regimes but don't plan to run a marathon either. My biggest problem the first 4 or 5 weeks, was dealing with the constipation/diaherra syndrome. I found if I was certain I was "cleaned out" before chemo day, I did much better. I continued my probiotic and took miralax daily while on chemo. Some weeks, I used something stronger the day before. The steroid will keep you jacked the first night and then you probably will crash about day 2 post taxol. Just plan for it. Some request Thurs. or Fri. chemo days because of that.
Joint pain is fairly common - for some reason claritin (non drowsy) helps most of us. Although I was given anti-nausea drugs to take at home, I realized that I really wasn't nauseated, just having acid reflex and I took nexium the whole time. Make certain that MO knows about any supplements or over the counter drugs you are taking. Also helpful - hydrate, hydrate, hydrate and try to exercise a little even if it's just a short walk.
I did stop taxol after 8 infusions because my neuropathy had gotten very painful. MO supported that decision although she did tell me later that if I had had lymph node involvement she wouldn't have.
But listen to Inger - don't borrow trouble before it happens. We all experience SE's differently and you may have minimal problems. One final piece of advice - ask for help if you need it and take it when it is offered. My DH has been running our household for years but if you are the chief, cook and bottle washer, it's nice to have someone bring in dinner on chemo night or drive you to chemo or walk the dog.
Stay close and keep asking questions. This is a great group of ladies who have been there.
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Great post, Taco. (And you made me smile. My dad used to say something like “head cook and bottle washer”—I hadn’t heard that phrase for years.
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Every Wed AM I get the results of my bloodwork from the previous Friday and things are looking good! My absolute neutrophils and WBC are up--in fact WBC are back up in normal range after having dropped the last few weeks. Glucose is back down after bumping a bit above normal last time, and protein is back up too. I've been pushing beef--eating it 3-4 times a week, and I think it's working well. That plus upping my banana intake are the two major changes I've made (oh--plus treating myself to some of those silly Odwalla protein drinks--I know not optimal but I think I'll keep them up through tx). Thought I'd share my good news!
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Wow Taco, your post should be a "go to" for everyone starting the taxol journey. Nice!
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Taco, great post! I agree it should be the “go to”
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ingerp, great news on your blood work
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Ugh, my blood counts continue to slide in spite of giving myself 3 granulyte stimulation shots each round. I'm just barely squeaking in with high enough couns for a reduced dose tomorrow (#8 / 12)
And yesterday in the evening I noticed the first gentle twinges of numbness in my feet and hands. It's very mild - I can almost talk myself out of feeling it but nope, it's there.
Booooo, Taxol, why do you have be such a drag?!0 -
Oh that's so good to hear that you switched to Abraxane and you don't have the joint pain! My MO is switching me tomorrow. I was supposed to go today but insurance didn't approve fast enough. I'm a little nervous that we are switching drugs but I can't imagine going all summer in pain and feeling like I have the flu! I have been in bed or on the couch this whole week! I'm managing the pain with Advil and Epsom salt baths but I'm feeling no drive to do anything else. I hope the abraxane is going to be easier to tolerate than the Taxol.
Anyone else make the switch from Taxol to Abraxane??
Take care everyone!
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Thank you Taco! Great info! I will be getting a port. What kind of restrictions did anyone have after getting the port? I hope to keep working as much as I can and it's a fairly physical job. I also have dogs, cats, horses and cows to care for.
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