Anyone on just Taxotere and Cytoxan?
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Hi all, I've been reading and keeping up with everyone but I'm not one to post often.
Otter, thanks so much for keeping up with everyone's schedules. I do take #6 of 6 next Monday - can't believe the end is in sight! When I started in March I thought it would never get here.
I felt down and discouraged esp. after #4 & 5, probably because I was getting closer to the end but wasn't there yet. And by then I was VERY tired of looking/feeling the way I was. The se's didn't hit as hard after those tx's, but they lasted a bit longer.
I did lose part of a toenail today; didn't hurt a bit and actually caught me by surprise. I had been watching the white line but wasn't sure if anything would happen.
I'm going to start on Nioxin next week; didn't want to spend the money yet if the hair was going to continue to fall out. I already have a little bit of white fuzz and want to help it develop into something that resembles actual hair.
I spent a lot of time last week at the lymphodema clinic here in town learning the do's and don'ts, and learning how to massage/open the passageways. I now have a sleeve, a night sleeve, and an appointment to get "better" bras. The therapist said that I'm in the earliest stage of lymphodema, which is reversable. Glad to hear that.
My kids have been great, letting me rest in the afternoons w/o disturbing me, and they've had sweet attitudes about my not taking them swimming. Just too hot to sit in the sun (which I'm not supposed to do anyway) with a scarf or cap on my head, enduring hot flashes.
A good week to all,
Michele
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Hello, everyone. My name is Wayne (Ya men get breat cancer too!) and I started chemo T and C, a week ago. I'm will be getting 6 treatments every three weeks. The first treatment itself was tough, cause I didn't know what to expect. Since then the side effects are not bad. I currently have neutropenia and have had a couple of injections of "neupogen". I just jeard about this webpage from someone today. Oh ,I have ICD invasive ductal carcinoma, had a partial radial masectomy about a month ago. Officially, I'm Stage II N1. I was under the impression that the SE basically are the same. What you get on the first one is about what to expect on the others. Is this true?
Wayne
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No, not necessarily. Sorry--I wish it were true that they were all alike. Maybe I'm just odd, but I had quite a few differences between cycles with TC.
The tender/painful mouth and tongue; the yucky taste; temporary constipation; diarrhea; and of course baldness--those repeated pretty much every cycle for me. Indigestion was severe during cycle #1 but I took appropriate drugs and kept it at bay for the other cycles; otherwise it would have been severe in all cycles.
OTOH, in cycle #2 I had hives for 3 days, and scalp bumps (folliculitis) over my entire head for a week. Those never recurred. In cycle #3 I had a rash on my left arm but not my right; hand-foot syndrome (bad, burn-like areas on the soles of my feet); extreme tiredness due to anemia; and a fever of 100.6 despite my Neulasta shot. Those did recur during cycle #4. With cycle#4, my big toes are numb--well, not totally numb, but they are kind of tingly like when a body part "goes to sleep". It's peripheral neuropathy, and I didn't notice it with the earlier cycles.
I am now 2 weeks past my 4th and last tx, and I'm still waiting to see what happens to the eyebrows and eyelashes. That will be new. It's so exciting.
BTW, there is a calendar of all the people here who are getting Taxotere/Cytoxan, posted on page 73 (the previous page). I added your name to those who had treatments on June 9.
otter
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otter,
Thanks so much for the info, and for adding me to the group. Maybe I'm just going to be lucky, but apart from the low blood count, things (the first week anyway) and really uneventfull except for one bad day.
Wayne
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Otter - thanks again for the awesome schedule.
Lee - when are you starting radiation? they told me I had to wait three weeks after chemo which puts me into September and with starting school that stinks. Are they letting you start earlier? I would love to
Karen0 -
Wayne - welcome. I knew men got bc because of my uncle. Several years ago he was dx, had a lumpectomy. Afterwards said he had a "smiley face boob". My se have been pretty much the same each time and generally just nuisance - no taste, mouth that feels like I had a great drunk and then didn't brush my teeth for a week, tiredness. I get neulasta shots, so days 4-5 I was achy, but that kicked in about 6 each of those nights, and I really slept a lot then. My energy level returned around day 8, but it was short lived. I had to rest more often. Each time seemed to last a little less time. I have said this before, I am a firm believer in massage therapy. I just about knocked out my migranes. My mt is medically trained, and began massages after the first treatment (I had to be released from the surgeon first), I really believe this helped with the symptons.
Karen - I am hoping to begin 3 weeks after chemo, since that what I have been told. I was also told by the onoc. that I would need 4 weeks of rad. I am saying hoping because EVERYTHING I have been told originally hasn't happened (wasn't in lump nodes, wouldn't need chemo, etc). I have an appointment tomorrow with the rad. onco, so I'm hoping to have a "real" answer. I'll let you know what he says.
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Sandy,
During which drug did you do the ice water? Taxotere, cytoxin or both? I am going in for # 2 tomorrow. Going to make extra ice cubes now.
Enjoy the day, Karin
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Wayne, it was good to meet you yesterday! I've already forgotten which doctor you're seeing. Glad you found this thread.
Michele
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Otter, thanks so much for your schedule. I actually had to have my tx 5 moved to 6/16 due to the extensive flooding here in my town in southern Indiana. Our entire hospital had to be evacuated due to the flood waters and will expected to be closed for at least 6 months due to the damage. Of course the cancer center was in the hospital, but thankfully they have moved to a very small space in one of the local doctors' offices. I am just thankful they have a place for us and we don't have to travel for miles to get our treatment. Today has not been a bad day as of yet. I go this afternoon for the nuelasta shot, so we will have to see how much bone pain I have from that in the next couple of days. Tx 6 is scheduled for 6/30 and then hopefully I will be done!! Thanks again for all of your efforts. Everyone take care.
Senora
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Hi All,
RobinK thanks for capturing so many of the same emotions I am going thru. I have been so "brave/strong" thru 2 dxs of BC that as I realized I was now facing chemo I just began to crumble. As you said I still have a "half finished chest"( still filling expanders from bi lat), lost my ovaries so hit menopause overnight (which may explain some of the crying) baldness in my near future, and an overwhelming feeling of being completely out of control over everything that is happening to me. I seem to cry at the drop of a hat. My 9 yr old daughter asked if she could help "pull my hair out" when it starts to come out and I just lost it!
I never saw chemo coming but recognized that I too need to throw everything at this BC because I do not want a 3rd DX and I need to see my kids grow up eventually be the world's greatest Grama! I am only 48 and have a lot of life that I need to live. Life isn't fair and I need to try get over my pity party and get back to focusing on the endgame!
So far after my first tx I had a few tired, upset stomach days but otherwise feeling pretty good so far. I have had some abdominal discomfort, not sure about that and if it is a SE or stress. Got out yesterday and took a long walk and did errands. Felt good to be normal for a day. Once I am bald I am afraid I may not be as anxious to leave to house.
Thanks to all of you....here's hoping we all have a good week!
Valerie
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Day 15 of cycle 1. This seems to be the day for stong emotions. I woke up today to handfuls of hair. I have been handling everything pretty well so far: lumpectomy, mastectomy, radiation and the first round of TC, but this threw me into a minor meltdown. All under control now, but it was rough this morning. I guess I will be in the club soon.
Otter, you were right when you said no one else understands what we are dealing with - emotionally and physically. I am glad I have you sisters (Wayne too) to help us all get through this.
Hope everyone is having a good no-SE day.
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HELP! To All Especially OTTER
My onco nurse just called and said my onco threw the ball in my lap and for me to run with it. I don't know where to go.
After 1st treatment, I had both Hand, Foot Syn and slight neuropathy. Hand Foot was limited to just big toes and thumbs. Sunday skin peeled off right thumb and looks like left big toe is getting ready to peel. They want to know if I want them to lower the dose a bit. As it is my dose was only 75, I weigh 153 and am 5'5". I am afraid to go any lower I want this taxotere to work at fighting. I'm willing to give it another try but to take all precautions. During drip should I try to keep areas iced? Help, treatment is tomorrow.
Enjoy the day, Karin
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Hi All! I had my 2nd TC tx Friday 13. All seems well. My chemo starts with potassium and magnesium, then 75 mg of benadryl. By the time the TC starts dripping I am already asleep and the next thing I know my chemo nurse is saying 'wake up now. You're finished. you can go home." Main problem I have had is broken air conditioner (3 times in 3 weeks). Maybe that kept my mind off everything else. My 3rd tx is July 2nd. My hair is thinning so much I think I may have 2 strands left by then. My onc gave me a prescription for a wig and encouraged me to at least look at them. My daughter is going with me to do that.
Thanks for all the boosts you all have given me!
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Hi Michele,
It was nice meeting you as well. Your'e right this is a great site. I had more blood draw today and the results are great WBC >15.0 LYM way up too!. I'm with Barton
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Hi all,
Just checking in and catching up on the reading from everyone. pmwelser, I'm just barely behind you, at day 13 after tx #1. I'm waiting for the morning with the hair all over the pillow...but hasn't quite happened yet. I keep wondering if I should go to bed with a bandana wrapped around my head just so I won't have a mess on the pillow. The "Aunt Jemina" look, maybe?
Today I went to lunch with my dh and ran into a good friend who hasn't seen me in several weeks--it was actually funny to see her shocked reaction when I was sitting there eating Mexican food, looking like normal (except for my hair being several inches shorter, but at least still attached); people expect us to really look like death-on-a-cracker when they hear what we're going through. (Not that I don't look that way without all the Revlon slapped on, but still.)
Wayne, I'm having the same question as you--will every tx be similar or a new adventure each time? The answer seems to be, who knows??? I had a really easy tx #1, but am not smug about it....I have 5 more to go. We're all different, but this board is a super place for support, no matter what happens.
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Karin--wow. So your onco expects you to decide?
My first reaction would be to throw the ball back at him. Does he think it would be OK to proceed with the usual dose of Taxotere tomorrow, or does he think you should reduce the dose or delay your next tx? Hand-foot syndrome (HFS) isn't deadly, but it is debilitating (I know); and if not controlled, it can result in infections that lead to hospitalization. It's really your onco's job to make this decision. Or, is he already saying he doesn't think it's serious enough to cut the dosage, but he will agree to do that if you are miserable?
The standard procedure with HFS is supposed to be to reduce the dose or delay the tx if it hasn't healed by the next scheduled tx. Here's the NCI grading scheme for HFS. It's pretty simplistic, but anything over Grade 1 is supposed to warrant a delay or reduced dose if it hasn't healed in time:
NCI grade NCI definition
1 Skin changes or dermatitis without pain, e.g. erythema, peeling
2 Skin changes with pain, not interfering with function
3 Skin changes with pain interfering with functionPersonally, I think that scale is laughable. How can you have redness and peeling without any pain? How can you have anything like HFS on the soles of your feet and not have it interfere with function?
The WHO has a different grading scale that seems more realistic. It has a lower category of "tingling in the hands and feet" that's not on the NCI scale:
WHO grade Definition & clinical lesion
1 Dysesthesia/paraesthesia, tingling in the hands and feet
2 Discomfort in holding objects and upon walking, painless swelling or erythema
3 Painful erythema and swelling of palms and soles, periungual erythema and swelling
4 Desquamation, ulceration, blistering, severe painIt is possible to have HFS "burns" during one tx that don't recur in the same places after the next tx. Maybe it's possible to have HFS after one tx but not after the next; that's not what I've read, though.
Here are some good websites that mention things you can do to prevent or minimize HFS:
http://www.chemocare.com/managing/handfoot_syndrome.asp
http://www.oncolink.org/treatment/article.cfm?c=2&s=13&id=384
So, I wish I could help. With my own "burns", I probably would have gone ahead and had the regular dose of Taxotere at my next scheduled tx. Mine had not blistered yet, though. Actually, they had faded so much that they were barely visible by my next tx.
My problem didn't start until tx #3, though; yours is much earlier. That's why I think you should take some time to talk with your onco tomorrow, if possible; and have him help you with this decision.
I wish I could help more.
otter
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Lots of activity here today.
Kfalls- Thanks for the info on Nioxin.
Otter- Thanks again for the schedule.
Sandym- FOOBS. That was funny:)
Everyone have a great evening.
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Lots of activity here today.
Kfalls- Thanks for the info on Nioxin.
Otter- Thanks again for the schedule.
Sandym- FOOBS. That was funny:)
Everyone have a great evening.
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Otter - about the eyebrows...tomorrow I will be 7 wks out from my last treatment and sometime today I lost my eyebrows...they were thinning...but gone for sure now..eyelashes appear ok!
Sharon
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SEVEN weeks? I did not want to hear that! (Thanks anyway. I guess it's good to know these things.)
otter
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Karin, I tried to keep ice water in my mouth for both. I know many others have recommended ice chips or popsicles. My infusion center doesn't have an ice machine but I might bring a small cooler the next time. My ice was pretty melted by the time I was done.
Good Luck. Let us know how it goes.
Sandy
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Otter,
Thanks for getting back to me. I had already discussed it with the onco and he personally didn't want to lower it but his head onco nurse always pushes for lower dose if in beginning of treatment. She likes to avoid SE's that can become permanent or are to debilitating for clean-up chemo.
She must have discussed it with him today when going through their line up for patients for tomorrow and that was when she called saying the doctor wanted to know what I wanted to do.
Still so confused. Didn't realize HFS also had numbness and tingling. Maybe I don't have slight neuropathy. Onco nurse told me she has never seen HFS limited to extremities. No palms just finger tips. No soles or ball of foot just big toes.
Saw surgeon today and he felt like me. Give it another go and see what happens. Soreness only last 3-4 days and went away. Tingling still very, very mild hardly notice unless trying to concentrate to see if its still there and then its only in my hands.
P.S. Which is the culprit? Taxotere or Cytoxin? Didn't see either listed.
Enjoy the day, Karin
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Karin, it's the Taxotere. It isn't listed very often in the general "patient information" stuff, but I've read about it in articles in official medical journals. I think HFS is just seen a lot more often with some of the other chemo drugs, like Xeloda (capecitabine) and the liposomal form of adriamycin (doxorubicin). I had even asked my onco about HFS before I started my TC, and she said it probably wouldn't happen. Oh, well.
This is from the National Cancer Institute website (http://www.cancer.gov/clinicaltrials/results/frozen-glove0805). It's part of a summary of a research paper published in the Journal of Clinical Oncology, July 1, 2005. The article reported results of a study on "ice gloves" to prevent HFS and nail problems with Taxotere.
"Docetaxel [Taxotere] belongs to the taxane class of chemotherapy drugs. Taxanes stop cancer cells from reproducing and have been effective in a wide range of cancers. About half of those taking docetaxel experience a side effect known as “hand-foot syndrome,” the symptoms of which can range from relatively mild tingling and numbness to painful peeling and blistering of the skin.
Nail problems are another potential side effect of docetaxel. In about 40 percent of patients the nails become brittle or discolored; in about 3 percent, nails may even become infected and begin to fall off (onycholysis).
While in many cases these effects may be only cosmetic, at times they can cause pain to the point where patients may quit or interrupt treatment."
This website lists HFS among "the most common" side effects from Taxotere: http://www.cancerbackup.org.uk/Treatments/Chemotherapy/Individualdrugs/Docetaxel
There are lots of others, but it's getting late and you need some sleep. (Me too.) BTW, my fingertips tingle ever so slightly--feels kind of like a buzz. My big toes are partly numb. It's hard to sort out the tingling associated with HFS from the tingling that's an indication of peripheral neuropathy. Maybe it doesn't matter. If I were you, I guess I'd give it one more try, too. The "75" you were referring to for your Taxotere dose is probably 75 mg per meter-squared. The actual amount you are given would be 75 multipled by your body surface area (formula using weight and height). I think 75 mg per meter-squared is the standard dose of Taxotere, so you are getting quite a bit.
Have a safe trip to chemo camp tomorrow!
otter
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Karen, I met the the rad onoc today. We are going to do simulation and tatoos on Monday and we could start 2 -3 weeks after my last chemo, as soon as my blood count was up. If I start on a Monday at 2 1/2 weeks, that puts me into the first week of school. I was hoping to finish before that. Also, the med. onoc said he thought only 4 weeks, but I'll be doing 28 regular sessions followed by 5 boost sessions.
Several people has said they were told they couldn't go swimming during rad in chlorinated water. I asked and was told I could do anything I felt like. It wasn't a problem. We spend the summer on the boat or by the pool, or at least that wasn't taken from me.
Hope everyone having treatments today have easy side effectss.
Lee
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Visiting from radiation treatment. Hit the halfway point today. 16 down and 15 to go. Yeah!
Catlover - I actually started sleeping in a night cap when I was expecting the hair to start coming out just to minimize the mess. It was helpful. Most of my hair ended up coming out in the shower rather than while wandering around.
Wayne - Welcome. Sorry that you have to be here. You will find there is much more info here than through most of the oncos. They mean well and most do try but they just don't have the benefit of seeing the number of patients that all of us represent. As to your question ... think of this as "every day is a surprise". Some SEs repeated throughout my 4 txs, intensities did change (some better and other cycles worse).
Otter and SharonS - I'm on the same timing as Sharon. Never lost all my eyebrows; had a fair amount of thinning especially on the outer halves (mostly in the few weeks after my last tx). Now hairs are growing in. Of course some are growing in out of the area that I want so having to pluck those. Doesn't seem fair to have sparse brows where you want them and still have to pluck!
Sharon - I'm actually 4 days behind you with radiation even though we finished chemo together. How's it going for you?
Lee - As for swimming during radiation, my rad onco cautioned that chlorine could cause extra skin irritation but also said home pools likely would be less a problem than public pools. So I'm not blocking that out as an option - although I did stop taking the aquatone class at the gym where I KNOW the chlorine level is high. Just be sure to use high SPF suntan lotion (I went up to 50 when I used to be mostly 15) and keep the area being radiated covered as much as possible. I did add in a BOSU and pilates class so I do still get some exercise.
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Thanks, Jisman, that's why I asked. We go to the pool at the marina and most days there is no one there and I've never noticed a high chlorine level. To be quite honest, I think it might be salt treated, but can't remember from last year. I really need to do something that will make this feel like a normal summer.
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Hi, I am starting TC tomorrow morning and hate the thought, of course. Have been checking this board for all the wonderful information you all have provided and hope that I can get along as well as a lot of you have done. I am on Dex today but can hardly feel anything, hope it works. I will be trying some of the things that have worked for you - ice water while being infused, etc. I am also going to sneak in some frozen type things that you put in coolers to keep things cold as in England I understand they provide cold/icy gloves for TC to reduce the nail problems and the peripheral neuropathy. Will try to stick something in my sock as well! My onc and chemo nurse both looked at me like I was crazy and said they had never heard of it - actually the onc almost laughed... I think we have to be superinformed in order to have some idea of what is happening to us, and hope that we can help ourselves.... I am also going to try taking lipoic acid supplements to try to reduce the neuropathy - there is an MD Anderson clinical study going on now to see if it helps in cisplatin chemo. Its purpose is: to study "alpha-lipoic acid to see how well it works compared to placebo in preventing peripheral neuropathy in patients receiving chemotherapy for cancer." They have you take it 3 times a day starting with day 4 and taking it until 2 days before the next chemo; it doesn't say the dose but cancer.org says up to 600 mg is safe, so I think I'll try three 200 mg pills a day. They say take it for 24 weeks for the trial and I think the neuropathy can start even long after chemo ends. I'll let you all know how it goes. Keep up the good work with giving us something and someone to think about besides ourselves! I am 12 weeks past lumpectomy and way past the window due to some side events but still have hope. I had 8 of 35 nodes pos, IDC, 1.4 cm, stage 1 turned into 3A, Grade 2-3.
Marilyn
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Hey all -- welcome to the newcomers. I'm sorry you are here, but I tell you, this board got me through some hairy days!
I am considering myself done with chemo as of today! I'm a week out from the treatment and last night was the last of the neupogen shots and I feel fairly decent -- just a bit shakey when I'm on my feet for a long time. On the other hand, my eyes are still twitching, my jaw is still clenching, I'm still having some shooting bone pains in those marrow producing areas, and I'm waiting for the eyebrows to drop (it could happen up to 7 weeks later? that doesn't seem fair! but then none of this has!). I have a follow-up visit with my onco next week, then on to radiation. . . Oh and I had my first visit with a LE therapist this week. She thinks I have some minor swelling --- enough to come back and learn massage and get a custom sleeve. I won't see her again for 2 weeks, but a least that's gotten started.
So many of you seem to be doing so well, that's terrific, but if there's anyone having a week or so of feeling run over by a truck sore, in a total brain fog, and unable to do much more than stumble to the toilet, you are not alone. I'll agree that TC was doable, but it sure wasn't fun for me!
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Revkat - congrats!!! I still have twitching (everywhere) 2 weeks after my 3rd treatment and wonder if I might never get rid of it!
Lee - thanks for the info on the rads. I don't know why they told me 7 weeks. I can only do it on weekdays, not weekends and they said 36 treatments. I was just praying to be done before school.
Welcome Marilyn - good luck tomorrow. The first treatment is the scariest and it gets better after that because you know what is going on. This is a great place with lots of good people to give you advice.
Just to provide you all with a laugh - I have not had to shave under my arms for months. Raised my arm tonight and had 1 hair about 2 inches long just growing there all by itself! I think it was making a statment that a lone hair could overcome the drugs.
If it can, we can too.
Karen0 -
I have felt really good since my 2nd TC tx last Friday, but tonight I am having some pain tonight in both hip joints when I walk. Could this be the bone pain from the neulasta shot I got Saturday? I have been really active today. My grandson (7) and I went to the mall and had morning coffee with some friends, then off to physical therapy, then to the park for picnic lunch. After I walked with him while he rode his bike and later played miniature golf. The pain didn't start until I had been home for a couple of hours. Maybe I am just old and tired.
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