Weekly Taxol group
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PatinMN -- well my dosage of taxol was reduced. I passed all the questions but one:
- Do you have problems walking? A=No
- Can you button your clothes OK? A=Yes
- Can you put on jewelry like earrings OK? A=yes (but is probably a maybe)
- Can you put on a necklace OK? A=No, I have to make sure I look at the clasp and the loop to make sure I know where they are.
Nurse said usually this doesn't mean an extra Taxol treatment. I see my MO next Thursday before chemo #8. Hopefully more info then.
Patin, it looks like you are almost done with Herceptin -- any SE's
Thank you all for your support!!!
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Patin~~I took the same regimen as you. 30 grams per day. I mixed it in a tiny glass with cranberry/grape juice. I broke the 30 grams into 2 daily doses. I also took and still take 100 mg of vitamin B6 twice daily.
Paula0 -
6cats - I hope the reduced dosage of taxol helps. Yes, I am almost finished with Herceptin - 2 more to go with the last on September 13 . I haven't had any side effects that I can pin on Herceptin. I've managed to keep the ejection fraction about the same throughout, and my MO says no more echocardiograms needed. (That actually worries me a bit because I've heard the EF problems can show years later.). After reading some people's reports of extreme tiredness and achiness when the Herceptin is run over 30 minutes, I have had them run it over an hour. I figure when I had 1/3 the dosage on weekly taxol + Herceptin and they ran the Herceptin over an hour, it doesn't make sense to get 3 times as much in a shorter time. Anyway, so far so good. You asked about a good board for Herceptin users - I read and mostly lurk in the Triple Positive board. It's very active, with lots of smart women and great links. I'm only double positive, and I see you are ER/PR negative, but there doesn't seem to be another Herceptin board that is very active.
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Thanks adagio!
Met with my MO yesterday and everything is looking good. 11 more to go
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I just finished 12 rounds of taxol too worst side effect was not being able to digest food day about 48 hrs after chemo. Took RX (prilosec and Reglan) which helped a little learned to eat VERY LIGHT just salads soups and smoothies helped more. Kept hair thanks to cold caps, Gained weight from steriods and very fatigued when the steriods wear off day 2 post chemo. No nail problems Kept dark polish on them the whole time totally worked. My skin still feels a little numb on face and legs, and still hot flushing like a tea kettle worst at night, but i'm relieved to be done now just watitng for MRI and next steps. My faith in God was everything to sustain me and still is. Keeping a strong positive attitude and stay FULL OF HOPE! Love and prayers to you all
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I have had such an easy time with Taxol that it shocked me today when I got blasted with fatigue...like being hit with a baseball bat! This was Taxol #9 and chemo was Friday. I have read that the effects can be cumulative fatigue wise and I guess it is catching up with me. I've gained a bit of weight too, so annoying! Done in 3 weeks and hope to get back to non-steroidal, non-starvation eating!
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Just got the reports back from MRI after completing 12 weeks of taxol and herceptin. Docs were amazed at the results 5 mm tumor and several positive nodes seem to all but dissapeared and melted away. meeting with docs in couple of days to discuss surgery. susaninicking, I know what you mean! eating like your starving!! Are you having any tummy problems? the fatigue is not fun and it does it hard. You'll be done in 3 weeks though! Yipee!
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My husband reminded me this morning that I might be so dead tired due to 2 infusions last week, Monday and Friday...oh duh, forgot! I was off track due to a stomach bug, had a late chemo on Monday and blood was ok on Friday for a Friday infusion. Result was yesterday's SPLAT!
Tummy trouble yes. For sure. I was on Aloxi for nausea in the beginning (is this a drug in America also?) and this was a culprit. What I'm taking now pre-Taxol can also cause problems but not the severity as with Aloxi. It's an unpleasant part if this but I can take almost anything after my first few months of almost non-stop nausea. So sick. I'm a real fan of Taxol!
Awesome news about your shrinkage and vanishing nodes and all the best with your upcoming surgery!0 -
LeslieVilla... That is the kind of story I love to hear... disappearing and melting tumors... make sure you take time to do a little dance of joy before you see the docs and enter into the next phase!
PatinMN... I don't know if the reduced dosage of taxol helped or not... numb fingertips, sometimes extending up to the knuckles. Painful, tingly toes, face, lip, tongue & gum numbness... but it is not getting any worse... just hard for me to stay in today and not make things worse than they are.
Tomorrow is Taxol #8. Slow but sure.....
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6cats~~Did you not do the vitamin B6, and L-Glutamine regimen for neuropathy? I stopped doing L-Glutamine about halfway through Taxol, so I still got neuropathy in the toes and bottom of my right foot. I've continued taking vitamin B6 even though I'm pfc. Neuropathy has gotten better each week. It's almost completely gone now, but I will continue with the vitamin for several more weeks.
I have a friend who was treated for colon cancer 3 years ago. He did nothing preventative and still has neuropathy.
Paula0 -
Thanks 6cats. Today I met with Surgeon. Says well now it's up to you mastectomy or rads and lumpectomy? She things taking rads and lumpectomy is the best route. Yikes when does this all end! Hopefully I won't have horrible side effects from rads. Is there any one here who's had 4 weeks of rads and can share side effects?
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Leslie,
We all respond differently but I want you to hear a positive story.
I had 28 treatments following 4 DD AC and 12 weekly Taxol. My experience was quite positive. The biggest side effectI had was fatigue which was cumulative.
I ran through chemo and was determined to do the same with rads. I found the mapping much more challenging but I had already had my reconstruction pre-chemo and still had nerve regeneration going on, etc.
The running took a little extra effort - as time passed. I always used the aquaphor and put that on in the dressing room right after treatment. I also used calendula cream which I'd read about on a thread here at BCO.
I used cut up t-shirts to add padding to my supraclavicular node area where my sports bra hit. That area was the only area where I had a little (and I do mean little) skin irritation. Not because of the t-shirt but due to the rubbing and also a reaction to my shoulder strap cover coming into contact with my skin. When that occurred I placed the Xeroform Petrolatum dressing on that area, covered that with gauze gently medical taped in place and then cushioned with cut up tee then my sports bra for running. When not running I used the dressing, gauze, and often went without a bra to give that strap area a breather. My MO also prescribed an ointment - which I used. I did not have any blistering, cracking, or peeling at all.
Eventually - I did have some tightening underneath in my upper chest area. My PT gave me some additional exercises to do to help to stretch that out and loosen it up. She's the lymphedema specialist connected with my hospital and I've seen her since 6 weeks post-op to deal with cording and lymphedema prevention. So I trust her implicitly.
Hoping your experience is a positive one with minimal side-effects.0 -
6cats, your neuropathy sounds really bad. I think if it were me I would start B6 and glutamine and tell the doctor to get with the program! Or just keep it a secret from the doctor. So many women have used that regimen with good effects - and major cancer hospitals are fine with it.
Leslie villa, I had 33 rads including 5 boosts, and had no problems at all. Just a little pinkness and a little bit of occasional itching. I used Miaderm which my RO recommended and provided, and they gave me Aquafor which I only used a couple of times for the itching. You will do fine!0 -
Thanks you brave beautiful women! I thin a lot of it depends on where you get treatment. some hospitals give higher rads thatn needed i've heard. So glad it went well and your done now!
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Hi guys - I haven't checked on here for a while as just been busy getting on with life and my weekly treatments. Just had my #8 taxol today too. Yay - 4 to go!! Am definitely starting to feel totally over the whole thing. I am tired, fat (glad to see I'm not the only one with appetite issues!), still pretty bald as hair not really growing, not much eyebrows anymore or eyelashes, my toenails are stuffed (fingernails still hanging in there) and still hot flushes and night sweats a million times a day!! Everyone keeps telling me how well I am doing and I'm starting to feel like a fraud - I feel crap and find it hard work to do anything. Neuropathy ok - have had some intermittent episodes but nothing serious. Taking supplements as much as I can remember too!
So looking forward to another months time when this chemo is over with. Getting measured up on 27th for rads. The next chapter!!!!0 -
Hi Ladies been a while since I posted. I had week 8 Taxol on Wednesday. My SE have been terrible.I had them really bad with A/C so really not surprised... Arthralgia so bad I had to be wheeled to treatment twice , ER between every weekly course for pain and nausea mgmt, headaches nose bleeds. Now on dilaudid every 4 hours just to tolerate the pain and so many nausea meds too many to list.Neuralgia so far seems to be limited to left thumb and a little in fingertips. Though both eyes twitch alot now and some twitching in mouth. I had neurologic issues prior to treatment but this is new SE I was 145 pounds pre chemo now after 4 A/cs and 8 taxols I am 177.8. Not sure how in the world that happened as food has not been my friend! The concern is I gained 7 pounds in the last 2 days. The nurses were very alarmed as was I. I have been breathless as well...So an echocardiogram has been ordered to rule out heart damage from the Adriamycin. The doc wants me to take a week off for my body to recover and then she is suggesting reducing dosage by 25% for the final 4 taxols as she is afraid that these side effects may be permenant and she wants me to have quality if life. But I have kids and want to be around for them, 8 and 13 girls. Worrying myself to death over whether to push the full dosage for the final 4 or if reducting it by 25% makes a huge differance in recurrance rate or survival rate? So I guess Im battling in my mind quality over quantity... and input would be appreciated.
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I do need to add I guess all of this pends on what the Echo shows...
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Romanticrose I am so sorry you are going through this! I will keep my fingers crossed that all is well with your heart!
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I am completely new at posting to these kinds of sites. Thank you Sissydi for starting this thread. I have been wondering how others have experienced weekly Taxol treatments. I had dense-dose AC over 8 weeks, then started 12 weekly Taxol treatments. Tomorrow starts week 8 of 12.
After week 1, my hemoglobin levels dropped to 8.7, but because I was not feeling enormously fatigued, I did not have to be transfused. If my level hit 8.5, then I would have had a transfusion. I had my 21 year old daughter and my husband donate blood designated for me in case I needed it. I really didn't want a transfusion so started eating iron rich foods (spinach and tuna fish) and taking large doses of iron (onc was okay with it - although it caused constipation). My levels went up to 8.9 the next week (out of danger) and have steadily risen ever since (although after the first week, I tapered off of the iron, using it two days before blood draw - it seemed to work for me). Now I take one iron every other day with two vitamin C tablets (that are supposed to help the iron work better).
I had different side effects every week. Week two I realized the tiredness of low HB levels. I slept a lot. (I am still working - so I slept when not working, and was tired at work.) I haven't tracked all of my side effects when they happened, so don't have a log, but I had things like blisters showing up on the bottoms of my feet for two to three days, then disappating. I had skin so dry that it peeled off. In the second week, this happened on my hands in the web from the index finger to the thumb. Later on, it happened on my toes, balls of my feet, heels are completely peeling, and down the outside of each foot. Luckily, I had heavy-duty cream from a dermatologist that took care of it, but the onc suggested acquafore (spelling?) in a tube (very thick). I've also tried Eucerin in a tub - it's greasy and stays on top of the skin for a while, but it works okay.
From week 1, I have had nose bleeds. The blood coagulates in the nostrils so that it just becomes difficult to breath without clearing it out. I haven't had a runny nose, so that's been good for me in public. No one has to know about the nose bleeds except for me and my onc, of course.
Week 5 and 7 I had vaginal bleeding. My onc referred me to a gynocologist. I had a vaginal ultrasound done before starting AC treatments (just to make sure there was no uterine cancer). I have another ultrasound scheduled for next week, and the GYN can see me in another two weeks. I don't think there's any more to this than a side effect of the Taxol.
I've had neuropathy in my toes and less so, but still there, in my fingers. It's bad in my feet right now. It's mostly been bad this last week (week 7 of 12).
I am a bit befuddled sometimes - but not always - and I can still do my job, which requires thinking. However, I was confused the other morning my the fact that the oven I was using to bake biscuits did not seem warm. Given that our less than 6 year old dishwasher, and washing machine, and refrigerator has each given out in the last three weeks, I'd just assumed that the oven was going too (also less than 6 years old). However, my daughter pointed out that I'd turned on the bottom oven, not the top oven that I'd put the biscuits in. I was surprised that I missed that detail and chalked it up to chemo brain - whether or not that's what caused it.
I've also been very tired, and with extraordinarily tired and sore muscles particularly in my thighs and back. It's tough to get up and do things if I don't really have to. That's not like me.
I have a mouth sore - just one - and it's been there for a couple of weeks. I have treatments for this - so not a huge deal.
Hair - yes, I have hair nubs after AC, but other parts of my scalp is now completely and smoothly bald.
Oh - one other thing - in week two or three - I had two things happen. After my treatment (I have a portacath on the left side) my left arm swelled to an enormous size with pain. It went away within about six to eight hours. Then the next week, I couldn't straighten my right arm without severe pain because one of my veins or something coming from the area where the lymph node was removed to my wrist was tight. It has taken me all of these weeks with exercising the right arm (straightening it, running it up a wall to straighten it) and massaging that vein (or whatever it is) to finally get the arm working again. It was quite painful to even reach for things, but now it's okay again. It's still there, but with exercise and massage (done on my own) it's okay.
I am looking forward to being finished with these treatments. Good luck to all of you going through it too. Thank you for your posts. It always is helpful to see what is in the range of normal and what isn't.
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ProfTNBC and Romanticrose, I am so sorry that both of you are experiencing such horrendous side effects from your treatments. As I look back on my treatments, I had minimal side effects and no pain at all nor neuropathy. We are al lso different.
Sending both of you hugs and love.
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Thank you honeybair for the warm fuzzies. I should also mention that I keep a list of positives of cancer - among them are not having to shave my legs anymore, showers being shorter b/c I don't have to wash my hair, my hair always looking fabulous b/c it's a wig (:-)), kindnesses of others (including posts like honeybair just made) - there are so many of these, bringing my family closer together, introducing me to a new world of strong and courageous people, learning new coping skills, finally getting serious about diet and exercise,...so many good things. I know this period of chemo, radiation, and assaults to the body will pass. I am glad there are fora like this one to connect us together. Thanks for your post.
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ProfTNBC,
What you have described occurring with your right arm is most likely axillary web syndrome - also known as cording. Some doctors believe it will resolve itself but there are significant studies that show that the intervention of an LE certified PT will help immensely.
You are at risk for LE because you had nodes removed. Seeing a PT to evaluate you, work on the cording, teach you manual lymphatic drainage, etc would be a good place to begin. Make certain he/she is trained in Lymphedema therapy.
Diana0 -
For any of you facing radiation after your taxol - i just I found this on another site and thought it was worth sharing here. written by an oncologist (Talk amonst yourselves.)
Radiation wounds are not really burns, and they are not rated by degree. Medical professional who are trained in radiation usage will generally not use degrees to rate the wounds. Instead, they will use "grades" from the internationally accepted CTC (Common Toxicity Criteria) that is used by all major cancer research organizations (that is why it is call "common"). The reason you can't use degrees is that burns start at the top, and spread downward, and the "degree" of the burn has to do with how far through the skin thickness it caused damage. That isn't at all what happens with radiation- therefore the degree system isn't very useful.
With regard to some of the advice in this thread- all I can say it that it is well intended, but perhaps not exactly accurate. I do not, in any way, discourage patients from forming communities and sharing information- but sadly that information is sometimes not accurate. Although we can't stop people from passing around bad information, we (physicians) can minimize that aspect of cancer care by slowly and patiently explaining what we are doing to your body and why- and of course, what you should expect as side effects. As a Radiation Oncologist, my consults generally go well over an hour, with an additional 15 minutes once a week during therapy, and 20 minutes at each follow up. So, for even the most routine case (which are never routine to the patient) I will spend several hours over the course of three months sharing information, explaining, listening, and responding to concerns. I am not a saint- I am paid to do that. The problem is not that physicians are lazy or greedy (some are) but instead perhaps the problem is that physicians often do not understand that their job is more than the performing of the service- their job is also the teaching, comforting, and true healing of the patient. I do not think that the accurate and safe delivery of radiation is good enough- it is only a small part of the job, and if you aren't going to do the whole job, send the patient to someone who will. I don't think I apply radiation with any more skill than other doctors, but perhaps I spend a little more time helping my patients understand and prepare for what I am recommending.
With that in mind, please allow me to share a little bit of general information about radiation wounds- although I cannot address your case specifically, having never examined you. There is zero build up of radiation in a patient from external beam radiation therapy (although there is from free isotope therapy or seed implantation- but those are very different). None. It does not happen. So you don't need to clear any residual radiation out, because there isn't any. I am not out to insult anyone, but to suggest that there is residual radiation following external beam radiotherapy is just plain incorrect.
Radiation wounds are not "damaged" skin, per se, as much as they are "missing" skin- let me explain- radiation causes skin to fail to reproduce properly, and thus as you "use up" your normal skin, like we all do all day, there are no new layers of skin coming up from the bottom. So eventually the area can ulcerate. This might look like a thermal burn, but it has very little in common with a thermal burn, and the treatments for thermal burns will not help much.
Let me be clear- many skin reactions don't need, nor will they find benefit from a 100 dollars worth of potions and lotions from the herbal medicine shop. You expect me to say that because I'm a doctor. Perhaps some will stop listening to me now because I don't think that a plant from the middle of the jungle ground up and slathered on your skin will fix the problem (why would it?). But, allow me to also say- most skin reactions don't need, nor will they benefit from 100 dollars worth of laboratory chemicals stuffed into a brand name prescription from the pharmacy.
Neither approach will help heal the skin very much, and neither will prevent the damage in the first place. Do I believe in natural cures? You bet. Your body, in its natural amazing way, can regenerate skin without lotions or potions or pills most of the time. Very few radiation reactions need serious supportive care, most (not all) will just get better. Of course, there are some severe wounds that will require medical attention, but without an understanding of what is wrong, no one, be they MD, DO, ND or Shaman, can be expected to properly assist you. If your medical professional is using terms like "second degree" to describe a radiation wound then there is a good chance (although I can't say for sure) that they are not trained in any of the more than 100 years of science and knowledge that can help you in this situation.
Now, keep in mind, I said herbal potions and laboratory chemicals won't heal the wound much faster- I didn't say they wouldn't sooth the area and ease your suffering while your body repaired the damage. That they are very good at. For a grade I skin reaction, a good non-alcohol containing aloe is about as good as anything that costs a hundred times of much, in my opinion. I would rather a patient use aloe, but there are also some lidocaine containing topical medications that are helpful if they insist. Colloidal silver (a very natural medication for the record, despite being sold at the pharmacy) can inhibit the growth of bacteria, although it may not cure an active infection. Infection in general is actually not that common in radiation wounds- but it can happen and should be treated when it does.
Rarely, radiation wounds do need more assertive supportive care. I'm truly very sorry that you had to experience such a situation. Keep in mind, you don't have to clear or remove dead skin from a radiation wound like you might from a thermal burn- at least not aggressively. The problem is missing skin, not damaged skin, or at least that is the more logical way to model the situation.
Missing skin can't be healed with an herb, or a medication, and missing skin sure as heck can't be scrubbed at until it isn't missing anymore. Missing skin, for the most part, needs to wait until the body grows more skin. That can take 2-4 weeks for very mild reactions, to several months for serious radiation injuries. Make sure your medical professional has training and certification in these issues, keep in close contact with them, and ask them in no uncertain terms for a timeline that you can use in your healing expectations.
Then, if your body does not respond on that timeline- ask them why, ask them if something is wrong, ask and then ask, and then ask some more, until your doctor explains what is going on with your body to your satisfaction. You have that right, and you also have that responsibility. Very few physicians, and far fewer patients, are qualified to give advice on radiation wounds. Find support and comfort on the internet- but find advice on the cause and cure for radiation damage to human tissues by consulting a board certified Radiation Oncologist- one that cares about your case, and takes the time to explain things to you.
God bless you and good luck.
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Perfect timing for me you posting that Leslievilla - I've got my radiotherapy consult/measuring up appt on Tuesday. Just had treatment #9 of 12, so hopefully will find out exact date for starting radiotherapy when I see them next week.
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Hi PatinMN,
I've been away and just saw your post. Thanks so much for the link. I'll follow up.
My MO recently took on the leadership of the Survivorship Clinic at the facility where I'm seen. She was almost dismissive of my complaints of numbness during treatment, and had nothing to offer me in many follow-up meetings after treatment was done. (I saw a neuro-oncologist at the center at the suggestion of and with a referral from her nurse-practitioner.)
In any case, when I saw her this July, a year after she'd assumed this new role, her attitude about my neuropathy had shifted. Her questions were more thoughtful and she was more respectful in general of the situation. Maybe a year of exposure to survivorship issues heightened her awareness. I hope so. If there's hope for her, there should be hope for all those other young, impatient oncologists out there.
I think some specialists have a very narrow focus when looking at patients. My sense is that neuropathy doesn't affect a high percentage of patients, and that when it does it often resolves. I think those of us who suffer permanent damage are in the minority. So maybe the first-line response is to reassure a patient with these symptoms that it's a transitory thing. Having said that, I don't get the sense that they're tracking these outcomes in a systematic way. At least that doesn't seem to be the case where I'm treated--and it's a major cancer center.
I'll share what I learn with her. Thanks again for the information.
Ann
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Hi PatinMN,
I've been away and just saw your Aug. 7 post. Thanks so much for the link. I'll follow up.
My MO recently took on the leadership of the Survivorship Clinic at the facility where I'm seen. She was almost dismissive of my complaints of numbness during treatment, and had nothing to offer me in many follow-up meetings after treatment was done. (I saw a neuro-oncologist at the center at the suggestion of and with a referral from her nurse-practitioner.)
In any case, when I saw her this July, a year after she'd assumed this new role, her attitude about my neuropathy had shifted. Her questions were more thoughtful and she was more respectful in general of the situation. Maybe a year of exposure to survivorship issues heightened her awareness. I hope so. If there's hope for her, there should be hope for all those other young, impatient oncologists out there.
I think some specialists have a very narrow focus when looking at patients. My sense is that neuropathy doesn't affect a high percentage of patients, and that when it does it often resolves. I think those of us who suffer permanent damage are in the minority. So maybe the first-line response is to reassure a patient with these symptoms that it's a transitory thing. Having said that, I don't get the sense that they're tracking these outcomes in a systematic way. At least that doesn't seem to be the case where I'm treated--and it's a major cancer center.
I'll share what I learn with her. Thanks again for the information.
Ann
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LeslieVilla, thanks for sharing your informative post about radiation. I will be receiving radiation after my surgery heals. It will be the second time around for me. I had radiation following my lupectomy 12 years ago come October. I am told that radiation has changed drastically over the last decade, for the better. The radiation must have worked on my breast. No recurrence there, but this time around straight to the lymph nodes, same side as original carcinoma.
I learn so much from you smart women. Thank you for keeping us informed.
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Thank you! This is very helpful information - I will follow up on it.
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Thank you for the information on radiation! I see my radiologist tomorrow for the first time. Today I just took my 9th of 12 Taxol treatments. The plan is to have a month's rest after Taxol (had 4 AC over 8 weeks, and will have 12 weekly Taxol treatments, then one month's rest). Will have 7 or 8 weeks of daily radiation. Have no idea of the side effects yet. Will see how it goes. This website has been a great source of information. Thanks to all for sharing!
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ProfTNBC & RomanticRose -- I so appreciate both of you sharing SEs. I had the blisters & peeling feet too... Only had a little on my fingers. Numbness on lips and gums also...
I had TH#9 on Thursday. This has been a horendous week. Was down in bed all day Friday. Unable to do anything at all on Saturday (missed two things that were very important to me). Managed church on Sunday, but had someone offer to drive me home because of how bad I looked!
Yesterday was a little better... Today, it is too early to tell. I am so tired of the Taxol and ready for Herceptin only... Or maybe I'm just ready to be done with weekly chemo and on to a once every three week schedule!
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