Anyone on just Taxotere and Cytoxan?
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well it is day 4 for me from my 3rdtx and I am wiped out. I have been napping every day. I have tried to accomplish something every day before the nap. Shopping one day, cleaned out a closet to day. Seems to help get me tired enough to sleep where as before I was just tired and could not sleep. It is about 95degrees in So cal today so I am sure that has something to do with being wiped out. SE's are par for the course right now. Hanging in there. Sorry some of you are having such a hard time...thinking positive thoughts your way to feel better.
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SharonS - congrats on passing that certification test. We are all ready to become your students. Sorry to hear about the lymphedema issues. Good luck with that.
Crafty - where in CT are you? I'm right across the border from Danbury in NY.
Otter - you can eliminate the ? after my 4 tx on the chart. It was that day.
Debbie - I'm 2 ½ weeks post last Tx and yes, my hair is growing. Eyebrows are continuing to thin. I'm being stubborn though so not yet drawing in brows. Anyone know how to truly make "feather-like" strokes anyway?
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Jisman, I took the "?" off the TC treatment list. I also made some other corrections, and I am adding Lenny, Trii, and lilwebb to the list. My internet connection was out for a few hours this evening, so my dh and I ended up watching a Netflix movie instead of goofing off on-line. I'll get the new list scanned and posted tomorrow morning.
Let's see...tomorrow is the 19th. I think we have two names up for tx's tomorrow--collector, and clcady. Collector is getting "regular" TC (4 cycles at 3-wk intervals), but clclady's schedule is different. I think she's getting Taxotere once a month, and Cytoxan weekly for 3 weeks. Is that right? So tomorrow would be a Cytoxan day for her. Collector, the build-up to the infusion is worse than the treatment itself.
Jisman, I sure wish I knew how to make eyebrows. Somewhere here I remember someone recommending brow powder instead of pencil, but I don't have a clue. I am so makeup-challenged that I've hardly ever used anything except mascara and some light foundation. What I will do once my brows and eyelashes are gone, is anyone's guess.
Tigwin, maybe I need to take up some housecleaning therapy. I am worn out, but my mind isn't sleepy. Don't know what to do about that. It's not the Decadron anymore. Ugh...the tops of my feet are starting to itch. What's with that?
otter
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Hi all,
I haven't posted much, mainly I lurk, but I've been keeping up with this thread.
Otter, your chart blew me away!
I wanted to add a note about the Neulasta shots (stomach vs. arm) just in case this helps anyone. My first shot I received in the arm, and it didn't hurt much. The bone pain, however, was very intense later. After my 2nd tx, my nurse suggested I receive the shot in my stomach since I wouldn't feel it as much and the bone pain would be lessened. I felt nothing, either the shot itself or any bone pain later. I should have continued that way, but no, I had to try an experiment to see if the stomach shot was just a fluke. After tx #3 I asked for it in the arm. It hurt just a bit, but I had the bone pain again (controlled by Tylenol). After this past treatment (#4) I of course chose my stomach, didn't feel the shot, and have had no bone pain.
I envy you ladies who get to stop after 4 treatments. I have 2 more to go. I think the hot flashes are the hardest things for me to deal with. They drive me absolutely crazy. I was having about 20/day but they're down to about 10-12 now. Anybody know if they'll keep decreasing?
Have a great week,
Michele
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Well, I leave in an hour for my first treatment and actually did sleep last night. My new concern is what I have read on the other thread regarding permanent hair loss from the use of taxotere. I think I want to address that with the onc first thing today. I'm a wreck just thinking of temporary hair loss but for the rest of my life?
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Hi everybody. Sounds like everybody is hanging in there. I am 4 days out from tx#2 and I feel ok except for the bone pain, loss of taste buds and the thrush coming back. I did not go to work today. I have much to catch up on since I was a couch potato all weekend. I do have a question though. I started my period about 6 days before my last treatment and I am still spotting. The last time I went through this in 2000 I didn't have a period for 6 months. So what is up with this? It's been 10 days. I hope it goes away for the rest of my 4 treatments. I have been told it may never come back depending on how close you are to menopause. I am pre-menapausal. We will see.
Another ? I do not get the shots..Nuelasta/Nuprogin. My Nuetrophil (sp?) got down to 2.3 the last time after the second week then bounced up to 19.3 How low do you have to get before they will give you the shot? I know some ladies here get them automatically but my dr. does not do that unless your counts are way down. I really do not want the shot since I have bone pain anyway without them.
Wishing you well collector and clcady on your treatments today.
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Hi Ladies!
Regarding the hives/bumps/bee stings, Kfalls, Loopylou, Sharon and everyone else, thanks for the feedback. It definitely makes Kathy feel better that it isn't just her on any of these se's. Her bumps are behind her knees, on her ribs and wrists, all over the place. The benadryl didn't do anything, the cortisone helped with the itching, but the onco prescribed prednisone for her (after convincing her that this was normal with taxotere) and that's done a great job. She's still very concerned about putting so much meds in her body at once, but I guess we have to deal with this stuff the best we can now and worry about detox when this is all over. Unfortunately the steroid also keeps her up all night, which has not been a problem at all up to now.
Danismom - I can just echo what everyone else is saying, the build-up and anxiety has been worse for my wife so far than the treatments. All that unknown is nervewracking. Once you start the treatments, you and your doctor can deal with almost all of the side effects (the doc can tell you the few leftover things that you can't learn here!). Other than that, drinks lots and lots of water and if your body says rest, then do it! Allow people to help you, now is not the time to be too proud to accept any help that is offered.
TNMichele - Kathy gets her Neulasta shots in the thigh, and that seems to work for her. For some strange reason, she did not get the total bone ache from the Neulasta this time around. She's on tx#3 + 14 days now, and it didn't happen. I guess that's variable too. But she got the rashy bumps instead, which she thinks are worse.
TTFN,
Steve
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Good luck to those getting treatment this week and a quick recovery to those who had it last week. And if it is your week off -- go have fun!
Day 7 and I feel like I am crawling out from under a rock. I can't believe how much better I feel. This is good.
It fascinates me how many different se's there are to this stuff and how everyone's experience of the same chemo is so different. I wish we could somehow tablulate everything and see if we could figure out what the variables are that make some folks feel fine, others like a truck ran them over, gives some of us rashes and others no skin problems at all, etc. Anyone need a dissertation topic?
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Jisman - my brows are thinning and I have been using brow powder. I like it better than a pencil because I feel like I can make a softer line - more whispy and natural looking. I do have a stencil to use if and when I lose all eyebrows.
Collector -when I read the threads on permanent hair loss, I freaked out. I have researched it a little more and it seems this is pretty rare and I also read that permanent loss after chemo tends to happen with repeated and different types of chemos - so I keep my mind thinking in that perspective and trying not to worry about it - sometimes easier said than done!
TN-Michele -I had lots of hot flashes and night sweats. I am now taking Effexor XR and it has really helped. We already take so many medications, but for me it is worth taking so I can get some sleep at night.
Revkat - I agree with the se's - it amazes me that the same chemo works so differently on everyone.
Hope all goes well for those receiving their cocktails this week - mininal se's to all.
Deb
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HeyRJ62 - By the third chemo you are suppposed to be in menopause because it has killed your ovaries by that time - at least that is what I have been told - so hopefully the bleeding should stop. My onc gives me a Nelasta shot the day after every treatment because he doesn't want my blood counts dipping. Painful the first time, but they cut it down in half this time and wasn't hardly anything. Wonder why yours doesn't give it? I think I would rather have the white cells.
Karen0 -
Hi all - Just returned from LT...I graduated to the sleeve...does anyone else have one....do you wear the glove and the sleeve all the time...and then wrap at night...those were my instructions...she said at least through radiation and then we would re-evaluate.
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tn-michelle, I have six treatments as well. Just did treatment #3 last thursday..we will get through it together. I wish it was only four. This last tx has me very tired. I can only imagine how tired we will be after six...but alass it will be done!!! Then I will do tram surgery, everyone else will be off to radiation and I will be having surgery.
It too amazes me how different everyones se's are and when they get them. Just a game trying to ride them out and help them be minimal. I added Lactobillious to my diet every day and Yucult (which is like danan activia)...I have had the least amount of stomach problems in round three. I am sticking to it. Basically I am giving my self healthy bacteria to tackel the bad stuff and it is working well. Keep you posted.
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Just found out that due to my neuropathy symptoms I'm going to be from Taxatere to Abraxane for my 3rd round- my oncologist claims I may be able to tolerate it better. Here's to hope. Anybody else try it?
Collector - I'm not a gym rat either, but my workout sounds like yours - a combination of step classes with resistance work - also some yoga. If I can't face the gym I have a nice 50 minute walk I do - sometime quite slowly. I've experienced some shortness of breath while exercising, but mostly it's been okay and gives me a small "victory" every time I do it - plus I always feel better afterwards. Here's the other thing - about 60% of the time I don't feel like exercising, but just do it anyway - because I feel better afterwards. In other words, I don't wait to feel better to exercise, I exercise to feel better. Cheaper and easier than anything else I've put myself through these past few months!
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Otter, I had the same problems with my feet after my second tx. I was told that it was hand and foot syndrome caused by the taxotere. I soaked my feet in cool Epsom salts at least three times a day. That did seem to help. I also used Udderly Smooth Cream which seemed to keep the bottoms of my feet soft. I also used that several times a day. When I walked I felt like I was walking on broken glass. It lasted for about 3-4 days and then thankfully cleared up. I hope that you can get some relief. Oh, your orange sherbet sounds wonderful. I am going to have to try that. Take care.
Senora
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I survived my first T/C treatment today and was surprised at how long it took. We arrived at 8:15 for an 8:20 appointment and left the parking lot at 3PM. Just lots of waiting for files to be located, blood draw done by the only person who was trained to do it through the port and a very busy office. My onc was thinking of not doing the Neulasta shot tomorrow. She sees many fewer infections during the summer than the winter, but our spring has been cold so we are late getting things into the garden, and I intend to get some kind of treadmill walk each day I can possibly drive there and gyms are notoriously germ rick environments. I felt better going ahead with the shot even though I know the SEs will be problematic. I felt pretty good coming home and DH fixed a good dinner but now I'm feeling a bit rumbly in the tum so we'll see how soon my gut starts reacting negatively. I have a mild IBS problem that seems to have escalated since being diagnosed so I have every possible OTC med for diarhea or constipation and sure hope they work. I did ask the onc about the permanent hair loss thing. She also said that it would have to be very rare since she has used this protocol for a long time and has never seen it happen. I will just have to be trusting I guess. Our other problem was that we stopped at the pharmacy of choice on the way home to pick up the meds that had been phoned over there. They could not fill the pill form of Emend but said they could get it by sometime tomorrow. Apparently they don't carry it routinely? Seems odd to me when there are so many on chemo. So we called the Onc office who said I had plenty of Emend from the treatment today and should just take it as soon as I can pick it up instead of first thing in the morning as they had written on my directions. Now starting to feel a bit crabby and tired. Sorry for the long post. Probably the steroids......
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Hi all!! I hope everyone is planning on doing some heavy relaxing and funnin' this Memorial Day weekend!!
I love reading all the comments and saying, "yeah! I have that, too!" My 3rd tx last week was the worst of all. I was down for a week and a half. I had a fever for a couple of days---did anyone else have a fever?? Also, about the constipation thing: are you taking the senekot S once or twice a day? Once a day didn't work too well. I lived on rainbow sherbert and ritz crackers. BTW: what does "dh" stand for??
Keep up the comments....great reading!
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DH usually means dear husband but occasionally people mean something else negative for the D. You're ahead of me some. I just had 1st chemo yesterday and am still feeling OK. Even got to the gym for a weenie workout but I know this is probably going to change. Neulasta shot this afternoon.
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Hi, all--
I've been "under the weather" (know what I mean) so I'm just now logging on. Today is a bit better than yesterday was--at least I'm not in bed! My regularly scheduled diarrhea arrived yesterday (as it has with each TC cycle), so today I finally gave up and took some Imodium as per my onco's suggestion. Other than that, the aches aren't quite so bad today, and the sore mouth is nearly gone (as are the taste buds of course). But, I have been running a low-grade fever (NurseLisa?). It's just in the mid-99 range, so no need to call the doc on that. (The trigger-point is 100.5 degrees). This same low-grade fever thing happened during this same time of tx #1. I figure it will be gone within a day, since I did get a Neulasta shot last week.
SharonS, I can't help with the sleeve/glove question. That's something Binney could tell you, over on the LE topic. It might be worth a call to your therapist, if you're not sure. Congrats on getting that checked out and getting a plan in place .
I am so envious of those of you who can exercise through this. Some days it's all I can do to drag my sorry butt out of bed to the recliner! Most days, I'm just lazy, which I promise to work on.
Trii, I guess congrats that you are graduating from Taxotere to Abraxane. I hope it works better for you. I've heard that Abraxane is way better than Taxol (even though it's the same active ingredient); and they don't need to use steroids because the allergic reactions are less common. I didn't know Abraxane was less likely to contribute to the neuropathy. That would be good. Fortunately, the only evidence I've had of neuropathy is that nagging eye twitch that comes and goes around day 7 or 8. No big deal, though.
Senora, I think the cool Epsom salts sound heavenly. I found a website that talks about ways of preventing or minimizing hand/foot syndrome:
http://www.chemocare.com/managing/handfoot_syndrome.asp
Some of the suggestions on that website really make sense. They say hand/foot syndrome is caused by leakage of the chemo drugs from capillaries in the hands and feet. To try to prevent it, keep your hands and feet cool during the interval when the drugs are in your system (first few days at least; maybe first week?). See the web page for specific suggestions. I walk around barefoot on our cool floor tiles--that's my therapy. BTW, my onco said hand/foot syndrome was more common with some of the other drugs, like carboplatin I think. She didn't say it couldn't happen with Taxotere.
collector, way to go!!! It sounds like you are handling the "chemo hangover" pretty well.
Well, my dh just walked in and found me talking to you guys; so now he's ticked off. He thinks the A/C (as in air conditioner, not Adriamycin/Cytoxan!) isn't working right, and I'm supposed to remember what it was doing the last time he called the repairman. Sorry, I don't have a clue. Business as usual. <sigh>
otter
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Otter, since my onc is aware of my IBS problem (used to be mild but now is worse becaue of cancer stress) she says that I can safely use twice the amount of the Immodium than is listed in the packaging. Since I have to be prepared for the diarhea and the constipation I have a kitchen table cluttered with separate piles of meds and clinic directions for each one. Maybe if I'm super prepared I won't have a problem? I should be so lucky. Hope you're better ASAP.
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collector - just like you I made a conscious effect to be prepared for the worst symptoms, even began talking senokat ahead of time, aleve and claritin before I got neulasta and Ihave to say, for the most part it has worked. My ses don't seem to be as bad as some of the others. Mainly I'm really tired - sleep 15-17 hours a day on days 5-7 and the bone aches haven't been horrible. I havent had any mouth sores, just a yucky taste that goes away about day 9. If I could find a way to avoid that, I'd be pretty happy.
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RJ62: I had my period after each treatment. After my tx#4 it lasted for over a week (very light). I asked my onco but she did not seem concerned.
SharonS: My LT gave me the same instructions. The sleeve is so much easier than wrapping. My swelling is very slight and just in the wrist area. How about yours? She also showed my how to massage to encourage fluid flow to working lymph nodes. Why don't they show this to everyone who has had nodes removed to maybe prevent lymphedema?
NurseLisa: My tx#3 was by far the worst and I had a fever as well. Tx#4 (my last treatment) was a piece of cake compared to #3, so I hope it is the same for you!
Debbie
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Trii - I was switched to Abraxane after having an allergic reaction to Taxotere on Tx2. Had no further issues (just standard constipation and tiredness). Did not experience any problem with my hands/feet with either drug so can't comment on that. I still was given steroids but in a different manner - took some the day before Tx and then got more in an IV prior to the chemo drugs. Be sure your onco confirmed your insurance will cover Abraxane ... not all will for early stage BC as yet. Hope that won't be a problem for you.
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Well...my functioning white cell count came back at 300. Not sure if I will get my #2 on schedule since they may have to give me the neulsata shot next week. My dr. is the kind that waits to see if I need the neulasta. It seems next time I will get it 24 hours later like most of the ladies here to prevent the whit cells to drop sp low.
Still having more mouth sores.... I am getting to know this thing better...I thought I was out of the woods as of last week...but I guess by day 12 my symptoms are barely showing up... ugh!
Day #12 after 1st tx.... my hair has started to fall out. Yesterday was the first sign of it...very few isolated hair here and there...today it was more strands....
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Well...my functioning white cell count came back at 300. Not sure if I will get my #2 on schedule since they may have to give me the neulsata shot next week. My dr. is the kind that waits to see if I need the neulasta. It seems next time I will get it 24 hours later like most of the ladies here to prevent the whit cells to drop sp low.
Still having more mouth sores.... I am getting to know this thing better...I thought I was out of the woods as of last week...but I guess by day 12 my symptoms are barely showing up... ugh!
Day #12 after 1st tx.... my hair has started to fall out. Yesterday was the first sign of it...very few isolated hair here and there...today it was more strands....
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Well...my functioning white cell count came back at 300. Not sure if I will get my #2 on schedule since they may have to give me the neulsata shot next week. My dr. is the kind that waits to see if I need the neulasta. It seems next time I will get it 24 hours later like most of the ladies here to prevent the whit cells to drop sp low.
Still having more mouth sores.... I am getting to know this thing better...I thought I was out of the woods as of last week...but I guess by day 12 my symptoms are barely showing up... ugh!
Day #12 after 1st tx.... my hair has started to fall out. Yesterday was the first sign of it...very few isolated hair here and there...today it was more strands....
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Jisman - what type of allergic reaction did you have on treatment two? I had itching and hives and they had to stop while they gave me more steroids and benadryl, but then I tolerated the rest after resting 30 minutes. I am nervous for #3.
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Good Morning All - I couldn't get to the site at all yesterday and I felt like they cut part of me off. Glad to hear everyone is feeling ok...Otter hope you have a better day today.
Debap...mine is mainly in my upper arm...and yes the sleeve is loads better...she is going to teach me the massage stuff next week.
I have my simulation at 230 today...rad onc said if it goes well, we will just go ahead and do the first rad also....so I am a bit anxious to get the first one behind me...probably the fear of the unknown thing
I have been so much more tired after the 4th treatment...today would be the day I would go again...and I still don't feel so peppy! However, I did get to play some vball mon night and did step aerobics yesterday....but my conditioning has taken a dive and I have been trying to be active....it is so discouraging....also it is a little discouraging that everyone thinks I should be fine since I finished the last chemo...yep I finished chemo and I am glad...but I still have it in my system, no hair, dealing with lymph, tired and feel like an out of shape fat person...did I mention the 15 lbs I gained....sorry, but needed to get that off my chest.
This week I am making a conscious effort to drink more water and eat more fruits and veggies....I only eat 3 meals a day and don't snack...so the weight thing is really getting to me....and I do some exercise everyday even if it just walking...
Here's to a better day today
Sharon
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SharonS, You are my motivation for trying to get some exercise in at all. It is really hard when I am so tired. Tx #3 and day 7. I finally did a yoga dvd for 30 mins yesterday and what a great feeling. It was so hard to do but I felt soooo good this morning. I now think no matter what I am going to force myself to do something even if it is for 15 minutes. It makes such a difference. Thanks for sharing what you do to motivate me.
Hope everyone is doing okay. Hang in there.
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Good morning all. Ihope everyone's day is going great and they are feeling good. I have a question.Beginning on day 4 and continuing nightly, I begin to get achy around 5 or 6:00. A bit later, my temp spikes, but not to the dangerous level ) between 99.7 and 100.3. The rest of the time I feel pretty good, although I get tired quickly. I haven't had bathroom problems, nausea. My mouth feels fuzzy, but that stopped at day 8 last time, and everything tastes crappy, that stopped about 10 or 11. I attribute the achiness to the neulasta or chemo, but I am curious about the temp. Any thoughts?
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beachmom/Lee, I have a theory...and that's all it is. I have no evidence whatsoever to support my theory.
I also get a mild fever--generally no more than 99.5 to 99.8 degrees--at the same time the "Neulasta" bone pain hits. Or, at least I'm attributing that pain to Neulasta; I guess it could be due to the Taxotere, which would make this even more interesting. Maybe someone who is getting TC but not getting Neulasta or Neupogen could take their temp daily and see if the same temp increase occurs at the same time....before they get neutropenic and end up in the hospital, of course.
Anyway, my "Neulasta" aches and pains hit around day 4 or later that night, and continue through day 7. At the same time, and with hardly any lag phase, I get that low-grade fever. OK, so what's causing the fever?
The standard line is that the fever is caused by an infection which may be so mild as to be subclinical. I think that explanation is boring, and I'm not buying it at this point. The reason is that the fever is coming way too early for it to be caused by a neutropenia-related infection. Even with Taxotere, where the neutrophil "nadir" hits earlier than with Cytoxan or Adriamycin, our neutrophil counts don't go down (on Neulasta anyway) until around day 6 or 7, and they're back up by day 8 or 9. Infections have incubation periods, so I would think it would take at least a day or two for an infection to get established during that low-neutrophil period before we actually started getting sick and displaying a fever.
If the fever is not caused by an infection, then what is causing it? Well, here's my off-the-wall theory, which I will gladly set aside if someone offers another reasonable explanation. I think the fever is caused by the same process that causes the Neulasta bone pain. Fever, after all, is really triggered by prostaglandins that our bodies produce when inflammation occurs. Bacterial infections don't cause fevers--it's our inflammatory reaction to the bacteria that results in a fever. I wonder if maybe it's our bone marrow reaction to the Neulasta that is resulting in a fever.
We know Neulasta and Neupogen cause bone pain. The oncos think the bone pain is due to "crowding" in the periosteum of the bone as newly minted neutrophils all try to get out at the same time. Pain occurs from stimulation of nerve endings, which can be from pressure or it can be from release of inflammatory-type chemicals like prostaglandins and leukotrienes (think "arthritis" if you want a mental picture). Our oncos (mine at least), plus lots of published research reports, say that ibuprofen can help decrease the bone pain from Neulasta. Ibuprofen is a major NSAID that works by inhibiting prostaglandin production, thus decreasing pain (think "make that headache go away," or "make those menstrual cramps go away," if you want a mental picture).
Hmmmm...we also have anecdotal evidence from our sisterhood that Claritin helps reduce the bone pain from Neulasta. Claritin is an antihistamine (H1 blocker), so how could that possibly relate? Well, here I go off on a limb again. There is nothing I can find to support the argument that Claritin works because the bone pain from Neulasta is due to an "allergy" to the Neulasta shot. If we were allergic to Neulasta, we'd develop an allergic reaction (hives, sneezing, swelling, difficulty breathing, etc.). It's a lot more likely that Claritin is working (if it does work) by blocking H1 histamine receptors as it usually does, and as a result, it's blocking pain. Besides causing sneezing and sniffling and watery eyes, histamine can trigger pain receptors. Block those receptors, and you block the pain.
The big question is, what is causing the release of all those inflammatory chemicals, like prostaglandins, leukotrienes, and histamine, after a Neulasta shot? I think--based on no scientific data--that the movement of those neutrophils through the periosteum is causing release of inflammatory chemicals, including those that cause pain and fever. Maybe some of the neutrophils are dying and releasing their contents. Maybe they're becoming activated as they get squeezed out, and they dump out their contents. They are awfully frail little cells, despite their aggressive behavior during battle.
Guess what? Neutrophils contain zillions of enzymes and...prostaglandins and histamine and leukotrienes! So maybe the bone pain and fever are coming from the neutrophils themselves, or maybe it's related to the pressures/activity in the periosteum.
In any case, I have no money riding on this bet. Now that I'm retired, I'm free to speculate like everybody else!
otter
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