Anyone on just Taxotere and Cytoxan?
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lemonjello love the name!
TC x 4 is what a lot of us are on. You have no node involvement but since you are grade 3 I think this is why your onco wants you to do the chemo. There are some that get TC x 6 with node involvement so you are definitely getting agressive TX. Did you get your oncotype score?
Good luck! You will do fine! Search the May 2009 chemo boards....I am on the March board and it has been very helpful going through it with so many others.
hugs,
Diane
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Hi Lemonjello, I did 6 rounds of T/C. One round every three weeks. So your schedule is normal. Good luck with everything. This is a great place for support!!
Chelev, I'm so glad to hear the good news. Never had a cough from Neulasta. I don't know what to tell you about the hair. I'm 5 1/2 weeks out of chemo and still have no growth anywhere. In fact, I'm still losing eyebrows and lashes. Sigh.
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Lemonjello--I, too, am scheduled for every 3 weeks, for a total of 4 treatments. I talked with my onc again this week about 4 vs. 6 treatments, and he reiterated that 4 is likely sufficient for me. I finished #3 2 weeks ago and will have #4 next week. My onc offered to postpone #4 for an additional week since I have had a great deal of side effects and I migh want the extra time to "recover" (!), but I decided to continue on schedule. Keep checking in here for lots of support and good ideas for dealing with side effect challenges. I hope your challenges are minimal!
Chelev--So glad to hear that you don't have a clot and that your port is operational. Whew! What a relief for you! I hope you will get that thing removed quickly to give you peace of mind and that you will feel positive about the next steps you take in your cancercare. I have a nagging cough, that starts out slightly then builds throughout the day. I have been drinking more fluids, if that is possible, talking less, and resting more--which, believe it or not, has helped. I am taking so many meds for side effects that I just don't want to take another, unless it gets worse!
Lisalisa--good luck with the voting!
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lemonjello: good luck, you're in the right place for TC advice
Firni: hang in there. My hair did not start growing back forever, took much longer then my Onc had predicted. Now at almost 3 months out I have a little fuzz on my head, and little bitty tiny eyebrow and eyelashes stubble trying to grow in. Of course, the hair on my legs started back almost immediately.
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kmmd, isn't that the way it goes? The first hair I'll have back will probably be menopause hair on my face.
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Wife started on April 30th. Has fatigue today, 5/3, and bone pain from the Neulasta. Will try the Claritin tip to see if it works for her, too. Next infusion is 5/21. She's scheduled for a total of four treatments.
Hope it's OK for me to post for her, as she doesn't do computers or the Internet. Thanks for the great support!
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Dutch -- you are wonderful to be here for your wife. Hope she is feeling better,
lemonjello ( great name); I did 6 rounds of TC every three weeks. I am Grade 3 as well - my oncotyope dx score was high at 29 - the reason for 6. Good luck --- you will get through this!
chevlev; I did neupogen daily instead of neulasta.// they're pretty much the same except neulasta is one big dose. I found that every surgical site -- lumpectomy, sentinel node site and port site got tender when I was on the neupogen. My onc told me that was normal... as white cells reproduce, they sometime settle in areas of recent trauma -- it's a healing thing.
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Chevlev - glad to hear the good news!
Question, anyone have problems with pimples? I've got a few on my head and on one big one on my forehead, one on my leg (in a hair follicle) and several in my private area. Really weird. Not normal for me so I'm attributing it to a se. No biggie but they hurt!!
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DutchinAtlanta: Welcome to our group. My hubby found this wonderful site for me early on and its been a life saver for me. I haven't tried the Claritin myself. Seems we have a pharmacy going in this house between prescription and over the counter aides.
Have your wife do the N &N's...Naps and Nutrition...drink tons of fluids it helps.
DH, keep your head up and give your wife tons of love.
Nadine
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Firni,
May I ask how come you decide to do TC x 6? I'm suppose to be TC 4-6. My oncotype score was 19. I was told that I may have a little added benefit with 6 cycles since I'm 36 yrs. old. But, my immune system is going a bit haywire a week after each treatment (I've had 2). So, I am thinking that I may tolerate 4 treatments.
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Hi there, my oncotype was 28 and I am doing TC x 4.......The protocol according to my doc (I got 3 opinions) is TC x 4. I see a lot of women on different threads that are node positive doing TC x 6 or ILC as a diagnosis for TC x 6.
Good luck! You have great prognostics!
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florbo, I was diagnosed with ILC, had an oncotype score of 28 and a micromet in one node. My onc decided I would benefit from 6 rounds. I would say that if you can only do 4 rounds go for it. I don't really know that the 2 extra rounds make that much difference. A bit of over kill and my onc did tell me it might be a little overkill. But I was scared and did all 6. In hind sight, I wouldn't have done the last 2 rounds because they just about killed me and not only are the SEs taking forever to go away, I'm afraid I may have some permanent damage that I wouldn't have if I'd just done 4. Now this is not to say that some one with a more aggressive cancer or what ever shouldn't do 6 rounds. I'm saying if your onc gives you a choice, and you are comfortable, go with 4.
sukiann, I did have a few pimples on my face about a month after my last chemo. Haven't had pimples for years. They went away pretty fast and didn't hurt at all.
Welcome Dutch. There aren't too many husbands that would do this. Your wife is very lucky. I hope she's doing well.
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My onc said 4 tc 3 weeks apart because of node neg. When positive he does 6 tc 3 weeks apart. They are all different - depends on where you are in the world. Regarding hair growth - mine comes in nicely for 5 days and then stops - not a good look. Still shaving for that smooth look but will try again next week. How do men shave their beards everyday of their lives??!! What a pain. Shaving your head is so different than legs and underarms - if you miss a spot no one knows but you but on the head it's there for all the world to see.
Sukiann - I have found that Aloe Vera after shaving and in the private area is great relief - hope this helps.
We are just home from a rainy Sunday at the Jersey shore - I watched movies and read The NY Times all day. How's that for a rainy day? Love to all.
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My first time posting here, though I've read many of the previous postings. Thank you all for the help and guidance so far...
I'm heading into my 3rd of 4 rounds of TC. So far my SEs are astonishingly mild, but of course I'm fearful that this next one could be harder. Still, my oncologist said my response to the first one would be representative of the rest, so that's encouraging. It's a bit worrying to read about the longer-term difficulties of many of you, but I truly appreciate hearing the spectrum. My most challenging issues have been with complications from surgeries (2 surgeries within 3 weeks of each other, and a mis-diagnosed DCIS that turned out to be invasive after all). Still in slow-motion healing after 3 months. Ouch.
Sending all of you healing thoughts from here...
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Elizrosner: I'd go along with what your Onc says, so good luck and here's hoping you remain light on SE's! Good luck and let us know how you are doing
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Had my first chemo yesterday, went well, so far. T/C 4x ordered, however, if my kidney labs look bad, they will discontinue the chemo. I'm wondering, if they stop it what happens in terms of SE?
I guess one round will be better than none. I chose to have chemo, i had a gray area onco score in the intermediate range 0f 22, so they said it was up to me and the grade 3 convinced me to do it, plus because of the holidays, i didn't get surgery till nine weeks from discovery! Then they needed clear margins and that took another 8 weeks. I worried about micro vascular invasion and the grade 3 and IDC. So i took the risk. My onc discussed dose density readjustments for the kidney disease, so i am probably not getting too strong a dose. Hope it works out for me, it's scary.
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Everyone must be napping!
3 of 6x on Monday! Woo Hoo - half way there! Ready to be half way done but not ready for anything else it throws me. I've felt great compared to alot of you and I'm worried that this one may just get me! I'm planning on getting away this weekend while I feel good. We have some property out in the country and I mean country! Just have a camper (30' that is) on it for now with no electric or water but have generator and water tank we fill periodically, so we aren't really roughing it. It's all woods and we've just cleared enough out for our play area. Love it!
Hope everyone is doing good and few SE!
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Hi again everybody. Thanks to kmmd for your reply. My 3rd TC round yesterday seems to have gone well and I'm still counting my blessings for feeling so much better than I feared I might. In that spirit, I want to share some things I've been doing in case of any of it helps others along the way. I've been drinking gallons of water before, during and after treatments. I've been blessed to have an oncologist with an acupuncturist AND a massage therapist on his staff, so while I'm being infused (in his office!), I get to lie on a massage table for both needles and bodywork. It's about as blissful as possible given that I'm hooked up to an IV pole the entire time. Thank God for believers in integrative medicine.
Also, at the end of the day and before even returning home from chemo, I went to a Qi-gong class at the Y (my 2nd visit to this class) for an hour. I'm new to Qi-gong but this could make me a loyal fan for all time. The restorative quality of these gentle movements is incredibly powerful, and there are many "exercises" specifically focused on detoxification as well as immune-strengthening.
Last but not least: I have a hair question! Maybe this has been discussed already before, but any tips would be greatly appreciated. After my hair started coming out on Day 20 (following dose #1), I decided to get a buzz cut and hope for the best. Not much stubble seems to be leaving me at this point, but the hair growing back looks very thinned out to me. I don't know whether to wait longer and see how it grows in, or renew the buzz and wait for the end of dose #4 to let it all (hopefully!) re-grow at the same time. Any advice??
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Wish my onc had that! Would be nice to have a massage while waiting.
Once I buzzed mine around day 17 of 2nd treatment, it quit falling out. (3 of 6 is next Monday so still early in treatments). It's still growing but very thin and so far I've been using my electric razor on it to keep it short. If I don't, it starts to itch and is irrating when trying to sleep. I've thought about letting it grow to see how it would look but haven't so far. The hair under my arms and on my legs have quit growing but still have my lashes and eyebrows. One thing I thought is weird, so far the hair on my arms hasn't done anything yet! I've really enjoyed the bald head - it's so much easier now! Love it!
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elizrosner: boy, I too wish my Onc had had that. I googled Qi-gong. Interesting. I think yoga was the only thing that helped my aching taxotere injured muscles, so I believe the Qi-gong could be helping you. I shaved my head twice during treatment because the thin scraggly hairs looked uneven and unkempt. After treatment stopped I didn't, thought I might need to, but the bald spots and shorter hairs are growing in and it is all evening out. I'm don't think shaving helped the thickness or speed of growth, just makes it look a little more even.
Cat1, I'm with you. Really enjoyed low maintennance bald
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Once I lost my hair at day 17 I kept shaving all the stragglers just so it would look smooth and nice. I'm still shaving every couple of days until I stop looking so spotty. Think I'll try again this weekend and see how it looks. Bald is so liberating!
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Every once in a while, I check back on this thread, as I thought I could answer some questions you gals are having. I finished my treatments in December. I had 6 rounds of it, every three weeks. My hair started coming out with the 1st round, and that's when I buzzed it all off, too. My scalp seemed to hurt for a while after, but that went away. When my hair started growing in again, I thought it was going to be really thin. It seemed that there were "spaces" between the hair, and then some bald spots. But I'm happy to announce that it is now coming in really thick. So give it time before you panic. It seems sooooo slow. I had my surgery and radiation after chemo, so that may have slowed it down some! It is just so great to NOT have to wear wigs and hats anymore!
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hello again. I'm chiming in about my head. I never shaved my hair. My sis-in-law cut my hair very short with a scissors and chemo did the rest, brought it down to it's bare minimum. I never felt any tingling or discomfort with the hair loss. I do enjoy feeling a little fuzz on my scalp. I have this habit now of petting my head. I must say I really like the ease of grooming without hair. I have cut my morning routine time considerably. I am kind of excited to see how short I can keep my hair once it does come back. I have one more TC tx left on May 20 before I graduate from chemo college.
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What i am noticing is a certain odor to my skin and breath with T/C. Sometimes stronger, then faint. It's coming out my pores! My dogs can detect it, they are less likely to kiss me. It's definitely medicinal smelling. I hated the effects of the steroids. Can benedryl be substituted for steroids? It's a good thing i chose chemo, got my report from my pap smear today...atypical squamous cells of undetermined significance...no HPV. What makes me really mad is that this appointment for a pap smear was my idea, no doctor bothered to check anything else out. Monday i see the kidney doctor to monitor the kidneys while on chemo, my idea too. So i now i have to worry about my annual pap smear next year too. Water is hard to drink, i have no thirst.
SE not really steady and debilitating at this time. 75 percent functional yesterday. Some nausea and weakness lasts for about ten minutes. I have a good appetite, darn.
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ELIZROSNER: When DH buzzed my head my hair felt soft. About two weeks later I started seeing short hairs on my pillow. A few days after that I got a terrific headache. The hair was shooting out of the follicles...I was back to wearing a cap to bed. For me my head is now totally bald, no hair. I did have two small patches on the back of my head about the size of a nickel where the hair never fell out but then wasn't growing. I took DH's mustache trimmer and buzzed them myself. My headaches went away! I massage my head several times a day which seems to make the scalp feel good.
LEMONJELLO: I asked my Onc if we could stop the steroids and or switch to something else. He told me the Steroids work hand in hand with our chemo drugs and are a must. I am allergic to steroids. And as most of us know the effects really suck. So for me with the steroids and the day after shot, I just hang in there and know its all going to pass....SOON I HOPE!
DH, sized it up pretty well to a friend last night when asked how we are doing, "Its like a roller-coaster"! My final comment was, "It sure is, try being on my side of it".
Heading closer to #3 on the 13th. Worried about the SE's being bad...always worrying about that. #2 has been milder over all.
Hope everyone is hanging in there! Thinking of all of you and sending hugs and good thoughts your way.
Nadine
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Now that I've done #3, the ride continues, up and down. My SE pattern seems to be most noticeable on days 2-5, with bouts of fatigue; this time I've unfortunately also had a bit of nausea and flu-like aches. Sigh. I'm still feeling grateful that it's not any worse, but will be so very relieved when I'm past the final #4 dose on 5/27 and past the aftermath too. My scalp is rather tender but hair loss seems to have paused, if not stopped altogether. I'm letting the buzz grow in and we shall see what happens over time.
One of my amazing realizations is that my incessant hot flashes would probably have caused me to complain long and loud in the past; under these circumstances, however, it's more "here we go again," given the other much more challenging and frightening aspects of this ride. Who knew?
And on another note: has anyone tried Neem Oil for scar tissue?
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I'm on day 19 (or is it 20) of tx #3 and this one hit me HARD. I have yet to get that day of "ok, I feel normal again" and my next tx is day after tomorrow. Too much nausea lasting too many days. Like Lemonjello and nadine54, the steroids are super harsh on me and the "anticipatory nausea" (a term I think they came up with as code for 'suck it up soldier') is getting worse. The neuropethy in my thumbs, which during the first 2 treatments subsided by week 2, have stayed on and become more constant.
I'm not sure if they got my weight right for the 3rd tx as they used a different scale and I was surprised I'd gained a few pounds although my pants are falling off and I can't eat at all. They say chemo is cumulative, so maybe it's just all caught up to me.
Anyone else out there who's 3rd course of TC was the worst? What will my 4th be like? I hope not worse than this one, because I can't go 13 straight days with 2 hours of sleep per night again!
PS to elizrosner- what's Neem Oil?
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HAPPY MOTHERS DAY!
I mowed our small yard yesterday and when I got done I felt like I was at least a 100 years old. I told DH when he got home form work that the weed eater part is his. I think I will wait until I can muster more energy...nothing like a nice long nap after wards. My appetite has taken a plunge. I have been able to taste foods all through #2 which has been a welcome change from #1. My problem is the last couple of days I have no appetite and have to force myself to eat something. Wonder why the sudden change? Nerves of the upcoming #3???
Having a real problem with the weight gain. DH brought me a treadmill home last night. After mowing the small lawn I figured I needed to go slow and easy on the treadmill. I want the old me back but know now isn't the time to push the limits. So since my balance is way off I figure I could do just 5 minutes two times a day for now and call it good. Once #4 is done and I am feeling better I can gradually increase the time and speed. My body took a leave of absence from me and left me with a old feeling body so its going to take time and tons of patience to get back in shape.
I am having problems with my finger tips chapping bad and sensitive when I touch things. My feet are the same. I hate shoes and socks but do wear both every day more for protection and helping with the balance issue. Will sandals ever feel good again!
Hope everyone has the best day they can today!
Nadine
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Is everyone having troubles with nerves when the next round of chemo is days away?
Been having some weird pain and tingling in my hands. My legs and ankles are also experiencing pain and tingling and are swollen. I have tried propping up my feet and thats not working. I wear socks and shoes every day. I would love to go barefoot but am afraid with my lack of good balance and the new problems with my feet I could fall. Suggestions?
#3 is coming on the 13th. My nerves and body just can't take much more. I am marching on (wish I could march) and looking forward to this part of the treatment being done. Gets old real fast. Very worried this time of the SE's, don't know why really. But as concerned about the hands and feet right now.
Nadine
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Nadine, It sounds like you're having some neuropathy in your hands and feet. I had the same thing. Foot and ankle swelling is very common with Taxotere. And no, keeping your feet up doesn't really help. My onc wasn't too concerned about the neuropathy or the swelling. He would just say, that's the Taxotere. He did check to see the extent of both SEs. If it's real bad tho, your onc might adjust your chemo dose. My onc never thought mine was bad enough to adjust my dose. I'm almost 7 weeks post chemo and I still have some tingling in my fingertips and toes and I'm still dealing with the swelling in my ankles and feet. It is all getting better, but way too slowly for me!!! I know there are several women from the Dec. group who are having problems with swelling yet as well. Let your onc or your onc nurses know what's going on. I am taking Alpha Lipoic Acid and B-6 for the neuropathy but I don't really notice any difference. Onc put me on a diuretic for the swelling, but again, no magic bullet there either. I do think that for the most part, the SEs have to just run their course and our bodies will heal as they can. Probably not what you wanted to hear. 0
