Anyone on just Taxotere and Cytoxan?
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So Karen...what did ya do with that hair?
I do like the statement it was/is making cause over the past few days I just wanted to throw in the towel. This round three kicked my butt and now as I am picking myself up again I am realizing I've developed edema. Anyone else experience that and how long does it last?
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I took 1 dose of AC and now they are switching it to TC I am not feally sure as how bad the first day
Bonnie
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Robin, when you say you've developed edema, where are you noticing it? All over, just certain areas? I'm curious what others have to say about that too...my face tends to be poofy enough without being blown up like a moon from the Taxotere. A nice look when the hair is gone and I can't hide behind it! Speaking of hair, I'm on day 15 after my 1st tx, and for the past few nights I keep having dreams of it beginning to come out, usually in some funny way or place (which I doubt I'll find funny when it really happens). So far it's still hanging on but those dreams are wearing me out!
What is it about #3 that knocked you down....mainly fatigue? Seems like that tx number gets mentioned a lot.
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catlover,
TC tx #3 was hard on me because that was when I first developed hand-foot syndrome, and I spiked my first "call-the-oncologist-immediately" fever (> 100.4). Naturally, the fever came at 10 p.m. on Memorial Day night, so I not only had to page the on-call oncologist at the university hospital, but I got to hunt for a pharmacy that was open at that hour on a national holiday. Such fun. What should have been my "good" week was marred by the foot thing (couldn't wear shoes) and the sinus infection (always feel yucky with those). Oh, and yes, I was anemic by then (hemoglobin around 10.1 I think), so I was weak and got tired easily.
otter
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catlover:
my hands and fingers are tight, hard to get my ring off. my watch leaves an imprint on my wrist and that never happens, my operative side feels tight and anything i wear leaves a mark, and my legs which are kind of skinny look fluffy - socks leave a mark.
glad you mentioned the face because i thought my face looked full. is that because of the taxotere (otter you probably know the answer)? The decadron we take doesn't help with the moon face either.
as for how #3 did me in...first of all i had a reaction to the taxotere the first night (chest burning, tightness). the next few days i was more tired than usual then day 5,6,7 i was physically and emotionally exhausted, the brain fog was worse than the other 2 cycles, my taste was shot, and this time around i got constipated. I reached a low point when i was ready to through in the chemo towel but i have persevered. today i have a sore throat - dh says it's red and swollen but i am not running a fever.
I guess that's it.
Robin
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Robin - I carried a lot more fluids after tx#3 - felt and looked more bloated than before. Onc prescribed lasix which seemed to help over time. Also more tired and for longer than the earlier treatments.
Slowly and steadily dropping the extra weight picked up during chemo - both fluids and food related. Exercising a lot more than I did before. And eating more salads before main course at dinner. I was excited yesterday when I was able to fit back into a skort from last summer. First time this warm weather season.
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Robin - I shaved the hair, but I guess I should have let it thrive.
I also have put on five pounds after #3 so feel better knowing that I am not alone.
Well- my pic line that I was really enjoying turned on me. Home health care nurse came to change the dressing and sent me immediately to the onc. Turns out I have a yeast infection all over my arm under the dressing (Ithought it itched) so they had to pull my pic line out. Now we will have to try to find a vein for #4. They put me on oral anit-fungal medicine for 7 days which has given me an upset stomach and diarrhea so the week that I actually stand a chance of feeling good is shot. Sorry to whine!
Jisman - good to hear encouraging things from those of you finished. It reallly helps.
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Karen, sorry to hear about your pic line. Just what you don't need. I was regretting not having one after #3. Is there anything we can do to improve vein access besides drinking a lot of water? My nurses didn't offer any advice. They did use hot packs. #4 is 6/24.
Jisman -it is reassuring to hear positve after tx reports. My weight fluctuates so much between tx's but I'm generaly up a few pounds by the time I'm ready for the next one.
Hope there are a lot of good days out there.
Sandy
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Day 18 cycle 1.
Robin, so sorry to hear about your arm. That must be really uncomfortable.
Catlover, glad to hear your hair is hanging in there. Mine is definitely coming out. Someone mentioned the gobs of hair in the shower, well I can sure vouch for that. I got my hair cut shorter - about an inch left, but didn't think I was ready to go all skin yet. Another couple of days dealing with the shower mess might convince me. Otherwise I am feeling pretty well.
I hope everyone is having good days and minimal SEs.
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Hi Ladies,
Well I am only on day 10 of my first tx. The SEs I am experiencing are abdominal discomfort and the most annoying is my nose is just feeling raw on the inside. Whenever I blow my nose it bleeds a little, not a full blown nosebleed but I feel like I am heading that way. The onc told me to use a saline spray but does not seem to be helping much. Anybody have any ideas?
On a funny note I decided to try a glass of wine last night and took a sip and thought "gosh this bottle has gone bad"......now I know what that "metallic taste" thing is! I will definitely not have another glass anytime soon!
Wishing everyone a good day!
Valerie
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Valerie, my nose is doing the same thing. Just on one side. I've been putting bacitracin in that nostril but it gets better for a while and then gets worse! Both sides of my nose are drippy but the one side is just painful! Also, I had the same experience trying a glass of very good wine that DH opened. Won't do that again. My stitching friends at needlepoint last night kept telling me I needed to join them for a meal out and just couldn't understand that NOTHING tastes at all palatable and I wasn't up for a bandanna/ bald meal at a restaurant just to push the food around on my plate. If you find a nose solution, please post.
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I gues things just build up in our bodies over time. I had thought that since I didn't have any bad reactions to the Tax. with #1, that I wouldn't in the future. But, at least when I see the types of things that you guys have experiened, I won't panic and I'll know it's just the stuff doing its job. Sheesh. And why do things like fevers and weird s/e's happen at night and/or on weekends??? Any time I've had some kind of random health issue (like the kidney stone I had a few years ago), it always seems to hit me in the wee hours on the most inconvenient day.
That's too bad about the wine tasting awful....I'm a bourbon & coke girl myself, and during this wk 3 I've enjoyed a few of those! I hope everyone is feeling good today.
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Just got a call back from my onco nurse. I had several complaints which she gave advice on. My very sore nose interior is to be treated with cortisone cream. Scalp sores with baby shampoo or head and shoulders ( as Otter told us earlier) and I am to take 2 Tblesp of Mylanta before eating as well as take a prescrip for something she is calling in for my increasing heartburn. The heartburn is not unbearable but I worry about a buildup which leaves scar tissue.
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Valerie,
As for the wine not tasting good, give it another week. About my 17th or 18th day out from treatment #1 I decided to give it a try and it did taste good again and I could enjoy it.
Enjoy the day, Karin
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thanks Collector, I am going to try to cortisone today! And MsKarin thanks for the heads up...I will give the wine another try in a week or so!
Valerie
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Hi, all you TC warriors!
I hear ya about the hair thing. I'm already searching my scalp for signs of life; but it's only day 17 of my last tx cycle, so it's probably still falling out rather than coming back in. I'm getting used to in-and-out showers and toweling my head dry, and the idea of washing and blow-drying long hair has sorta lost its appeal. I might take this opportunity to switch to a really short hair style, which will shock my family as much as my baldness will. (Except for my dh, no one in my family has seen me since before all this began with my dx in January.)
The taste of wine is funny, too. My dh and I used to enjoy a glass of wine with dinner every night. We weren't into the expensive stuff, but it was fun to find a bottle of a nice wine and look forward to opening it. We had a wine rack full of decent wines right about the time my dx hit. I cut back because of sudden alarm about increasing my risk of recurrence, so my dh has been enjoying all those wines without me. No matter--everything from maple syrup to dill pickles tastes, well, tasteless during chemo; so I wouldn't have enjoyed the wine anyway. Now that I've finished chemo, I guess I'll have to decide how much risk I'm willing to assume.
Robin, it is the Taxotere that's causing the fluid retention. Here's what www.rxlist.com says about it:
"Severe fluid retention has been reported following TAXOTERE therapy.... Patients should be premedicated with oral corticosteroids prior to each TAXOTERE administration to reduce the incidence and severity of fluid retention [see Premedication Regimen]. Patients with pre-existing effusions should be closely monitored from the first dose for the possible exacerbation of the effusions.... When fluid retention occurs, peripheral edema usually starts in the lower extremities and may become generalized with a median weight gain of 2 kg... Fluid retention was completely, but sometimes slowly, reversible with a median of 16 weeks from the last infusion of TAXOTERE to resolution (range: 0 to 42+ weeks). Patients developing peripheral edema may be treated with standard measures, e.g., salt restriction, oral diuretic(s)."
I gained approximately 8 pounds during the 24 hours following each of my infusions, but I lost that weight over the subsequent 24 hours. I was taking 16 mg of Decadron (dexamethasone) each day (8 mg every 12 hrs), on the 2 days after each treatment. I also got Decadron in my pre-med infusions. The Decadron helps with several of Taxotere's SE's: it inhibits allergic reactions, it reduces fluid retention, and it helps control nausea.
catlover, I don't know why the SE's hit at night either, except I do know that our temperatures follow a daily cycle and the high point is in the evening. Oh, and collector, I hope you get that indigestion under control soon. That was the worst SE I had during my 1st cycle, except maybe for the Neulasta pain.
Hugs to all--
otter
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Hi Diane
I had my first treatment (CT) last thursday and by Sunday ended up with a seizure. Very weak, bone pain was intense, headache that just would not stop, hives, dehydrated. My Onc. has decided to change my regimine to CMF. He feels I had an allergic reaction to the Taxotere. So there are other options out there Diane. This new treatment is for older people or people highly sensitive to drugs.(I get sick with Aleve) I know I can not handle another tx of CT. I am hopeful that I will tolerate this new regimine. My fingernails are feeling sore but still there so far. I am very sad too about the hair too(mine is half way down my back) and not much we can do about that except try to find some good. I am just going to try to enjoy having a hair vacation, No more brushing, curling, straighting, shampooing, conditioning, frustration in the morning when my bangs won't work, deciding how to wear it today. So for a few months I can be free from my hair. There are some great wigs and hairpieces out there for those times when we choose to use them.
Please be very careful and talk to your Onc about trying something else that your system can handle.
You are in my prayers and not alone.
Deb in AZ
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Deb, that's very kind of you. DianeB's post was from back in January of this year. I think she was switched to CMF, too. She hasn't posted in a long time, but she seemed to be doing well when she last visited the BCO boards.
otter
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Otter,
Thanks for the update on dianeB. I think i was looking for someone else who knew what I just went thru. It seems most did so well on CT and I seem to run into obstacles at every turn. It was nice to see this CMF thread, Is CMF not used much ??? I am praying that this will work for me.
Thanks Again
Deb in AZ
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Collector - don't let the heartburn get out of hand - my onc said that most patients end up on Protonix or some kind of acid inhibitor and it has helped me tremendously!
Deb - so sorry about your reaction - hope you tolerate the other better.
Karen0 -
Protonix is what she prescribed for me. I couldn't remember (chemo brain making me soooo stupid right now) and you hit it on the head. I hope it works, too.
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I have not posted in a couple of weeks. I asked my onc to let my go three weeks between txs instead of two so I could go to a conference at the beach and then stay down a few extra days with the family. It really helped as I had the nose sores, burning espogus and sore throat so it gave me time to heal. This week I have worked full steam as we sponsor a conference for 2000 teachers. They gave me the job this year of staying in headquarters away from the crowds and so I could sit most of the time. Many of the people I see throughout the state only 3 or 4 times a year stopped and said they loved my new hair style. I just said "thank you" to most of the them. To a few I know much better I said "you can borrow it if you want?" You should have seen their eyes. I to do not like the wig as it gives me a headache my lunch. While just in the office I have been taking it off and using a cap for the afternoons.
I had tx3 of 6 Wed. the 18th so I need to be changed on the list. I will then be every two weeks again. I am uplifted that number 3 may not be as bad as expected but I know it will be over. I am getting ready for a quiet weekend on the couch with no deadlines.
My oncy did have me start on the Maalox and Mylanta depending on if I had the diarrhea or constipation. So far the proactive approach is working. I will know more after the weekend.
This is a great site for learning about the possible issues so we can be prepared and especially the great web sites. I was talking to a guy today whose wife has undergoing chemo for stage 4 lymphoma and he was talking about retiring to just keep up with the research to help her. I feel better after reading these post (even if I don't get to them but every couple of weeks) as I know you guy are out there listening, talking, and researching. Way to go!!!!
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UUMMMM...and my latest problem is 2 infected vaginal hair follicles. Jeez! It's not like I haven't been scrupulous in the hygiene department. Add to the dryness and it's getting painful just to sit, not to mention other activities.
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Otter,
Don't remember which thread but I do remember you recently said you called Redex because you couldn't find udder cream locally. How long did it take before you received it? Only asking because they now make a new formula "Udderly Smooth Hand and Foot Cream" which contains 10% urea. It's not available in the stores yet so I had to order it from them. Just wondering when to expect it.
Tomorrow will be the day big toes turned red and sore after first treatment. Lets see if, ice pack during drip, B6, udder cream and precautions can hold it back a bit this time.
Enjoy the day, Karin
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Do most of you have your blood counts, etc. checked during the 3 wk period between treatments? I haven't, and am wondering how you know when it's more of an issue to stay away from people & places. I'm mostly being a complete hermit, but have made a few forays to the library and Kroger (wiping the buggy handle with an anti-bac wipe like an OCD sufferer). I'd like to get out a little more as long as I'm feeling like it, but do not want to take unnecessary changes of catching a bug. Also, on the same note and speaking of "other activities", *ahem*, what about intimacy with the dh? As in, when, what, when not to.....I know I may not feel like it much in the future, but this time, well.... I've just refrained because he works in a place that someone always seems to be working with some kind of contagious crud. I can ask my onc., but he's there with me and would probably be embarrassed (or maybe not--I think he thinks the onc is kinda cute).0
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catlover -- I had my counts checked mid-cycle after the first treatment to see how the neupogen was working, then after that only on the day before treatment. My onco said to be extra careful days 7-11 (and specified "no intercourse" -- really, she said that in front of my husband and everything). But I know your nadir may vary depending on whether, when, and how you have neulasta or neupogen.
Karin -- that's really interesting about the urea. I have used a lotion with urea in it daily for about 30 years now (ouch, that feels old) due to a congenital dry skin condition, now I feel better about how I slathered it on my hands and feet during chemo. I'm 11 days out from my last treatment and the skin on my hands is really peeling -- but I don't know if it is the taxotere or just the dry skin.
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catlover - I had may blood counts checked on day 8 of tx 1 to determine if I needed neulasta or not. I did. Now that are checked only on the day of tx.
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Lenny, I've made the change in your schedule so it will be correct in the next version I post--hopefully that will be this weekend, so we can cheer for everybody who's up next week!
Um, collector, I really can't help in "that" department--I had folliculitis, but it was only on my scalp. Ugh.
Karin, I am using "Udderly Smooth Extra Care Cream" on my feet. It does contain urea, but the key for me is that it does not contain fragrance. My skin has always been sensitive to perfumes in lotions etc., and my red, peeling feet are no exception. I've been using the "Extra Care Cream" for 3 days now, and it really seems to be helping. I don't know how long it ordinarily takes to receive an order from Redex--do they have any shipping info on their website (www.uddercream.com)? My package arrived in just 48 hours, which made me and my feet very happy. I think they may have expedited the shipping because I fussed at them so much.
catlover, my onco only checked my wbc on the day of each treatment. She said that the center's protocol was to give Neulasta with each TC tx, and assume that the wbc would be OK mid-cycle. Of course, that made it even more important to monitor my temperature and call if it went up to 100.4.
I was told that the lowest point in my wbc would be around days 10 to 14. That may have been true, since that was when I developed a fever during tx's #3 and 4. I was told to avoid crowds and limit my risk of exposure to infection during those days (10-14), but I generally was careful throughout chemo and took extra care as early as day 7 or 8.
Sex poses multiple problems. Not only is infection a possibility (bladder infections, vaginal infections), but mucous membranes become sore and inflamed with Taxotere (it's called "mucositis"). That means they're more sensitive to trauma. And, if that's not enough, I also read in my "chemo orientation" booklet that chemo drugs are secreted in body fluids during the first day or two after each infusion. The booklet said specifically that "precautions" should be taken to limit other people's exposure to our body fluids during those days, and that included using a condom.
revkat, my feet are peeling where they had developed the "burned" areas during tx's #3 and 4. It doesn't hurt where they're peeling, because the skin is nice and healthy under the areas that are lifting up. The newest "burned" areas are still a little tender, but the Udder Cream really is helping I think.
Everybody have a peaceful weekend, with minimal to no SE's!
otter
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Hi all. Just been lurking and not replying much. I had treatment 3 of 6 sixteen days ago. As for the comments on #3 tx being the worst, your not kidding. 4 days later my blood pressure dropped and I passed out when I stood up. I was running very low for 2 days 79/66. Doc's office said to rest and drink lots of fluids. Also the taste buds were shot for longer this time and my energy was extremely low. I haven't had a fluid problem either but this last treatment I have gained 5 lbs in 2 weeks. I really hope # 4 goes a lot better. I have only been taking 1 day off of work during each treatment but this last time I took 2.
Its getting harder and harder to deal with this especially it being summer ..... no sun, can't taste all the wonderful fruits and veggies, to tired to enjoy my own garden and walking the dog ( Poor girl I feel like I have been neglecting her). Hot flashes ....who needs those when its 90 degees outside. Anyway sorry for the complaining. Just feeling down I guess.
Wishing all minimal SE's.
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Hey, RJ62, don't apologize for complaining. That's what we're here for. If nobody complained, we would all feel worthless and out of a job.
I feel for you in your woozy-headedness and loss of taste buds. You will be halfway finished, though, as soon as you're through these SE's from tx #3. Just think of it as rounding the curve and heading home. Even if the SE's are bad on that home stretch, it's easier to tolerate them because you know the end is in sight. I know having 6 tx's is harder than the 4 I had, but you can do this!
The university where I used to work began holding a "farmer's market" on campus a couple of years ago. Everything sold there has to be grown locally. The market is once a week, starting around Memorial Day or even earlier, and ending after Labor Day. The really good things--the blueberries and sweet corn and first peaches of the season--come early in the summer, and I've missed that already. I had rarely been able to make it to the market when I was working, but once I retired last July, I figured I'd be a regular customer. Didn't happen this year, though, between the SE's of chemo, the avoidance of crowds, and the prohibition on raw fruits and veggies. Darn.
Even though we're not supposed to get sun exposure while on TC, I've been trying to go outside for a few minutes most days. I have very fair skin and burn easily even under normal circumstances, so I limit my exposure to maybe 5 minutes of sun. My theory is that, with my light skin and living in the Deep South, 5 minutes of sunlight on most days will give me more Vitamin D than I could possibly consume in dietary supplements. So I'm doing it for medical reasons, even as I make sure I'm not getting the least bit pink. (Not too crazy about the color pink lately, for some reason!)
otter
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