Anyone on just Taxotere and Cytoxan?
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Goldilocks, I found Nioxin at my regular salon for about $35. Regarding the Oncotype test, I also answered a lot of income questions, and was told that whatever my insurance company wouldn't pay would be written off. Still waiting for the results of the test, so not sure when (or if) the chemo will start. Reading other stories has been extremely helpful. Thanks for being there. Unless you're in Hawaii, then I want to be THERE!
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Hey, I'm back from chemo camp! Actually, I got back about 4 hours ago but I'm so buzzed from the Decadron that I've been reading and posting on the boards ever since.
beachmom/Lee, you weren't supposed to get chemo if you went on the Hawaii trip. Didn't you get that memo? I thought that was the whole point of escaping to Hawaii today. Or, did I miss something? I obviously missed the plane, because I ended up in a Naugahyde chair around 2:15 today, with an i.v. cath in my hand.
Amy, what's the deal with your veins, anyway? I've been so lucky--mine are holding up well after 3 tx's. There's no sign of the toxins they're pumping in there, so I think I can make it through one more tx without a blow-out.
Oh, man, I'm on a new page here and I can't go back without losing my post. I'll have to punt and just tell everybody how much I love y'all and how I hope your tx's and SE's are as mild as can be.
I had a different chemo nurse yet again today (that's 3 for 3), and she had a different "favorite" protocol. She started with the Zyrtec, and then ran the Decadron and Zofran. That's backwards from the previous times. Then, instead of the Taxotere, she ran the Cytoxan; and the Taxotere was last. She said she did it that way to let the premeds work as long as possible before infusing the drug that was likely to cause a reaction. Makes sense. I didn't care; I haven't had a reaction so far, anyway; and today was also reaction-free. (I did get a bit of a sinus burn because she ran the Cytoxan fast, but it didn't come on until the last 5 minutes, which was too late to slow the drip rate.) The last thing I got was my Neulasta shot, which they give on the same day as the chemo where I'm being treated. It seems to work that way--I haven't had a fever yet, and my counts on the morning of each treatment have been fabulous.
I am not liking hearing about your insurance companies denying coverage for the Oncotype testing. I'll bet they're just bluffing. Lots of insurance companies are doing that these days--they pay their people to deny claims and stall, hoping policy holders will give up and pay out-of-pocket. If you fuss and stew and file appeals, and maybe even threaten them, a lot of them will back down and pay the claims...but not until you've lost way too much sleep and eroded way too much of your stomach lining. I've read about states in which class-action suits were filed on behalf of women whose Oncotype test claims were denied. One was in Michigan, filed against the state Blue Cross/Blue Shield. BCBS lost the suit, and had to pay retroactively back to a certain point because it was determined that Oncotype testing had become "standard of care" for early, node-negative, ER+ BC. Maybe you should sue them. Oh, sometimes you can't, because the fine print in the policy requires settlement by "binding arbitration" instead.
I could say some bad words about all of that, but I'll save them for Traci's bitch thread. I still have not received a claims statement from my insurance for my Oncotype test, and it should have gone through by now. I hope that's not a bad omen. If they don't pay it, it will have to come out-of-pocket because my dh and I won't pass the "income test" even though my tumor passed the "need test."
Oh, well. I guess there are more important things to deal with right now, like the fact that I am still wide awake and it's midnight; and I need to take a Prilosec pretty soon to ward off the indigestion I'll get otherwise. My onco gave me Ativan for times like this, but I really need to get up and pee every couple of hours to flush this stuff out of my system.
Hugs, everybody!
otter
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Otter, I know I wasn't supposed to get the chemo, but the nurse showed up in the seat next to me and said she had never been and wanted to go too. Then added we might as well make good use of the time. Go figure.
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Otter - I am buzzing with you. Feel like the energizer bunny.
Rosario - Glad you feel good. day seven was turn around for me last time and a I felt better each day. Enjoy!
JT1945 - Congrats on being done! Wow! Can't wait to join you.
Goldilocks - I am waiting to hear on Ocotype too although I got a letter from Genome stating that they would help me appeal for up to six months if my insurance denided it and my doctor said he would help too.
Amy - I had the same thing with the vein in my hand, even scabbed over and pealed but they didn't seem too concerned and just used another one in my hand this time. I will ask about the arm next time.
Sharon - congrats on your exercise certification. I am currently enrolled in a exercise program at our local hospital for cancerpatients undergoing treatment and recovery. It is awesome and like a mini-support group.
Beachmom - I love your anology - I will now view chemo as Hawaii until I can actually get there.
My trip to Hawaii was quite interesting yesterday. They started the Taxotere and I immediatley started to itch over my entire body. Felt fine, but just mentioned it to the nurse and within 30 seconds they had pulled a curtain around me, kicked my friend out, had 6 nurses and a doctor, oxygen in my nose, blood pressure going, listening to my lungs and pumping benadryl and more steroids into my iv. It looked like an episode of ER. I was actually laughing and saying that I felt fine, just itchy. I guess I now know that they are proactive. They let me rest for 30 minutes and then decided to rechallenge with more benadryl. I certainly do not want to take the alternative chemo so thought positive thoughts. They ran it really slow and I did develop a few hives on my forearms, but they disappeared after it was through running. Now I am a little scared for 3. Has this ever happened to anybody?
For those of you interested in the Nixoin, my sister works in the beauty supply industry and has me using it even on my bald head, both shampoo and treatment. Don't need much. She said it will keep the follicles healthy so strong hair should grow sooner. I actually have quite a bit of regrowth this first round and it is normal hair.
Enough of my steroid enduced rambling!
Good luck to Maggie
RJ62 and Annie for treatment Th and F.
Karen0 -
Hi everyone,
I take my trip (to Hawaii) tomorrow morning. Hope it goes as smooth as the other two. This is #3 of 6-the halfway point!!! I'm doing 6 because I'm triple negative. I've been drinking up a storm today (non-alcoholic, of course:))
CHJ- It's supposed rain again tonight and tomorrow:( Glad you're all done! I planted a few flowers yesterday in the wonderful weather.
Kfalls- You're just one treatment behind me.
Otter- You're just ahead of me-2 days??? But only for 4 right? Hope your side effects are minimal.
I'd like to try the Nioxin. Will this work for my husband too?- he's getting a little bald spot.
Good days to you all! You're always on my mind.
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Morning all,
Otter; I have BC/BShield. If you have the information on that case that went to trial and they lost, sure would like to print it out. Did speak with Onco-Dx yesterday and they informed me that not to do anything. They will appeal once again, then if it is denied they will contact me to let me know. Still planning on getting all my ducks in a row-document, document, document.
I can't get back to a couple of pages or will lose what I have written. So, my sister who went to the Look Good Feel Better class. You can complain about what happened. I actually contacted the main e-address, and was informed that if someone has a bad experience it really should be reported. She said how else are we to know that things are not going well? I posted the information below for everyone; if you wish to contact them.
Sandi Garon-Robison
> > LGFB Program Manager
> > Personal Care Products Council Foundation
> > 202-331-1770lookgoodfeelbetter email:
lookgoodfeelbetter@personalcarecouncil.org
I was very pleased with such an immediate response. Sandi is very nice and she cares about the success of the program.
Wishing everyone a great tan in Hawaii.
Cynthia
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RNKaren - yes, rain today and tomorrow, but it sure was nice to have those few sunny days!! Everything is so lush and green right now, I love it. Flowers are popping out - I will miss a lot of them, and will have to get planting stuff at the new house. I did dig a few things out to take with me. We are especially watching the weather for Saturday (yard sale - we want to get rid of some stuff before we move) and Monday, our move date. So far it looks like the weather will cooperate, but we're keeping our fingers crossed!
For all of you doing your chemo in Hawaii, I wish I had known about that option! I felt more like I was doing mine in some third world country or something (I was going to say "New Jersey" but didn't want to offend anyone!
)I'm feeling relatively decent, 8 days out from my last chemo. Yesterday I was still feeling the sandpaper-mouth and the stomach lumps, but I think that's all clearing up. Still a bit tired, but not too bad.
Hang in there everyone!
CHJ
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CHJ- Definitely take those flowers. Have someone dig them for you. Don't use all of your energy. Saturday is supposed to be sunny. Where are you moving to?
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We're moving to Taneytown to a low-maintenance place. We bought the new house last fall then it took 6 months to sell our current place. It was really frustrating with this real estate market, but the timing ended up amazing, since our move is after chemo is over (God is so good!) I dug out lillies last fall & planted them at the new place, and they are all coming up, so that will be a happy thing when they bloom. Last week I dug out some irises that were done blooming, so they are in pots already.
CHJ
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Ok girls, now you've got me scared. What's this with the shots in the tummy??????? I always figured the shots would be in the butt. Someone let me in on this other kind torture that I wasn't aware of please.
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danismom - I have never gotten a shot in the stomach - my neulasta is given in my arm. Not sure what that's about. Maybe I have missed some fun! Let me know. Karen
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SharonS: I was also wrapping and then was fitted for a compression sleeve and gauntlet. The sleeve is so much easier! I have very slight swelling in my wrist area, but my LT wanted to stay on top of it. I have to say, I almost felt like crying on my first visit. Silly, but it is just one more thing to worry about, you know?
otter: Pretty impressive chart! My oncotype test was denied at first and then I received a letter from some appeals company saying that they were going to advocate my case. About a week later I received notification of approval from my insurance company. Good thing, b/c I didn't order that test (my onco did) and I wasn't paying for it.
danismom: My neulasta shot was also given in my arm. I had heard about the stomach too and was relieved when asked to roll up my sleeve!
8 days out from tx#4 and feeling pretty darn good! I scheduled my "switch out" with the PS for May 28th and can't wait to get rid of this expander. Anybody's hair starting to grow back after their last treatment?
Debbie
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danismom, I get neupogen instead of neulasta, so we take home 5 shots to give me and the easiest place is to grab the stomach flab. Sounds a lot worse than it is.
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I'm way behind, but more about that later...
goldilocks, here's a web address for that lawsuit in Michigan:
www.michigan.gov/documents/dleg/84289_BCBSM_11-27-07_222540_7.pdf
Kfalls, I'm so sorry to hear about your reaction to your TC infusion. It's great that the medics are on top of those things, but it is so curious why some of us have reactions, and others don't. I feel very lucky that, despite all my other oddball reactions, my infusions have gone smoothly. Oh, and the Neulasta shot has to be injected subcutaneously. My chemo nurses said the available places are the back of the arm, the abdomen, or the thigh. Mine prefer the arm, unless there are reasons to give it somewhere else.
I am so confused about the Hawaii trip. I thought that was supposed to be a way to avoid chemo, and now I'm finding out that some of you are going there to get your chemo! Makes me think Alaska might have been a better choice after all.
And, the reason why I'm behind in my reading and haven't updated our TC chart yet is because this cycle has once again been different from the previous ones. I felt better than ever yesterday and last night, after I got home; but today I was wasted. Really, really tired and weak; stomach a bit iffy (not nausea--just queasy enough to mess with my appetite); a tiny bit of a headache; and could not keep my eyes open. So I took a Phenergan, my Decadron, and a couple of omeprzole (Prilosec); snacked a little this a.m.; drank a lot of fluids; ... and went back to bed. I was up and down every few hours doing the drinking and bathroom thing, but I haven't felt "good" all day. So, who said the day after chemo was supposed to be "normal"? My dh was hoping we could make it to a baseball game this weekend, but that's when my bad days usually hit.
According to the calendar, for tomorrow (Friday), we have cinlee and RNKaren. Like everybody here, I am soooo wanting this to be over. At least I feel like I'm past that mid-regimen hump, with 3 tx's down and only 1 to go. I do not know how some of you can do this 6 times.
Yesterday my onco reaffirmed that she thinks the SE's are harder for TC than for AC, at least during the treatment period. (Long-term SE's may be a different story, with the cardiac effects of Adriamycin.) She said she was at a meeting recently and everybody was sitting around the table, comparing notes. Somebody asked, "Well, are you using much TC? What are you seeing for side effects?" The whole group began telling about all the SE's they had been seeing with TC. So, they know we aren't making this up.
Hugs!
otter
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Hi all,
Had my tx#3 today and I am half way through YEAH YEAH...wish it was four but I am set for 6 treatments. Very tired today from the treatment came home and crashed on the couch for about 3 hours. That was a first for me. I am usually so wired from the decadron I cannot sleep. Felt good.
Had a great check up after chemo. My onc did an exam and she was very happy to report she could feel my lump was decreasing in size which means the tx is working. My lump is very large and was as hard as a rock just six weeks ago and now it seems softer, you can move is a touch and is smaller !!! That felt great to get that report.
I also scheduled my bilateral mastectomy and recon for August. I am doing the diep tram so that works out great as well. It feels great to get the plan in motion.
Now about the tummy shot....I sell insulin for a living which is an injectable drug that patients take 1-4 times a day. The tummy is the least amount of pain in the body. You would be surprised. You do not have nerve ending in your tummy. You have strong muscle which and your bottom which you can tighten up when you are nervous so you tense up and it hurst more. You tummy you cannot tense up like that unless you are a very good athlete. Try the tummy you will be surprise. It does not hurt. Good luck
Sorry to hear some of you are having a hard time remember we are all strong and this too shall pass....okay off to ativan and comp night.
cinlee and rnkaren...I think you are up for your trip to Hawaii tomorrow ...have a great relaxing trip to camp chemo.
Be Well
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I'm awake when I could be sleeping a little longer.
The past two day have been so tiresome- usually I'm feeling good with most of that poison out of me. So this makes me think how I'll feel after treatment today. It usually takes me til day #3 to start feeling tired and weak. We'll see. My daughter is taking me and another daughter is stopping in to be with me- We'll have a "Mother-Daughter Day:)" The youngest daughter (26) can't make it.
Just out of curiosity- Have anyone of you previously injured your breasts? Like in 2002 my right breast was bruised and sore from an auto accident by the seat belt. It makes me wonder if there was any connection. It was in the same exact spot where my cancer started.
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RNKaren - Yes I actually fell down a set of lofted beds in college and hit my breast right where my cancer is. It has been tender my whole life and always given me problems during my mammograms. I had wondered if there could be a link but thought people would think I was crazy if I asked. Otter - my onc nurse told me that treatment 3 was usually the one with the most side effects - kind of the one where your body said no more! Maybe that is why you are feeling a little more icky. Hope it passes.
I had to laugh during my treatment because the ceiling panels in my infusion room are clear with pictures of tree - kind of looks like Hawaii.
Hoping for a great day for everyone!
Karen0 -
Good morning to all
debap - I go to the LT again today...and she is going to start the massage of other lymph nodes. I am getting better at the wrap...but I still don't like it..I thought my hair was going to start coming back...but this morning some of those were gone...guess they got hit with #4 TC yesterday...Everyone says it will come back...so I am counting on that...
revkat - I agree the stomach is a good place...I tense up my arm too much and then it hurts..
tigwin - congrats on halfway
otter - #4 days have been pretty weird for me...I will feel great one day and then the next have zero energy...but at least I am done..so I should keep feeling better. and you are almost there...hang in there!
better get to work
Sharon
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I'm sorry I am behind on reading the posts, so I just want to wish everyone who's having tx today a pleasant tx with minimal se's.
Also, just to update you on the brown tooth... it was stained, and my dentist buffed it out, so it looks like new. The dentist said that chemo can really do a number on our teeth! I also had a cavity in the tooth NEXT to the brown one, so he filled it at the same appt. I guess dentists really ARE lonely and depressed, cause he had enough time to fill my cavity, and I didn't have to make another appt. for it. I will go for a cleaning and x-rays in July.
Have a great weekend, all!
Harley
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Morning sisters,
depad: My last tx was 4/24 and still have no hair. Also, still losing my eyelashes. I did have 3 layers, so they were quite thick. Now, I have maybe 20 lashes on either side. Should be sprouting new stuff soon, I would think...
otter: Thanks for the website. Will print it out. Just in case.
danismom: I could not take the neulasta; highly allergic. Had to take the neupogen shots, but had to go in each day for the nurse to give it, in my arm. Got old, and I still had a reaction to the neupogen, but not nearly as intense as the neulasta. Tried it when I went through this the first time and I could not move/at all. The shots made me hurt after a few, but hey I never did get sick.
RNKaren: I don't recall ever injuring myself. Of course, ask again in about a month. Chemo-brain, still kicking.
This morning I feel a bit better, and pray that this is the start to healing. The swelling in my ankles, feet and legs is finally going down. Have been sucking down fluids like I'm heading to the desert. That must be doing the trick. Always have hydrated, but since they told me that the lasix dehydrated me, they encouraged me to drink more than usual. They also suggested that I do energy drinks, and Gatorade for immediate results. Seems to be working.
Warm, sunny days ahead. Happy Friday.
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Can't sleep at night. My hair is suppose to go sometime soon and I realized this morning how scary that will be. I have my wig and scarves and hats yet I feel that I am unprepared. I kept on feeling tingling and itching on my scalp but thought at some point I was just imagining it since I know those are the symptoms I am to expect...TX#1 was Thursday of last week so today is day # 9 ...and I know it is just coming.... Got to admit I thought I was stronger than what I am over the hair thing....I am just glad I am feeling well otherwise...Thank God for that!
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Rosario - I couldn't sleep at night after my first round forever. Even after I was off of the steroids my mind just wouldn't shut down. Tell you dr. and use what they give you because you will really feel so much better if you get some sleep.
Karen0 -
I agree get your sleep. Last night I didn't take anything..thought I should start getting off the stuff...bad idea...very tired today...so will call and get another refill on the ativan...tylenol pm has started to mess with my stomach...
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Good morning all. So far, I am having no problems after tx2. Couldn't sleep Wednesday night, probably the decadron, but I made up for it last night. I went to bed around 10 and didn't get up until 11 this morning. I slept like a baby (and like a baby had to do the "diaper change" every few hours, but went right back to sleep). Spend yesterday with my parents. Dh cut their grass, and things like that. Had the neulasta shot yesterday and so far no problems. Last time it hit the afternoon after. Awful pain and my temp went up. I asked the dr. about it and he said because my wbc had been so low, I probably developed an infection. Since he had put me on an antibiotic, it was already in the process of knocking it out, since the temp was gone the next day. I'm supposed to take my parents to an anniversary party for their friends on Sunday, but last time that was my bad day - I slept most of the day. Hope it doesn't happen this time. For some reason, they really want me to go with them, although my sister is also going and said she would do the driving.
Hope everyone has a good day and few, if not no, side effects.
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Hello and best wishes to all my lady friends!
I know I've been diving in and out lately, work is ridiculously busy - I haven't even had a chance to catch up and see what's going on with everyone. But I do have a question for Kathy that needs answering.
She is now on Day 10 after tx#3. Yesterday she started developing welts (hives? bug bite looking things?) scattered around her body. Anybody else ever have that? I remember reading about the red bumps on the head, but these are more like puffy little bumpy areas on her wrist, back, different places. And they itch! Really like bug bites or poison ivy, except she hasn't gone anywhere where she could be exposed to that sort of thing. Anybody else have this and can recommend a solution? She called the doc yesterday, they told her to try some Benadryl, that didn't really help.
Any help would be much appreciated. She is very uncomfortable! And also good luck to all the ladies who have treatments today...
Steve
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Steve - I got those about ten days after my 1st treatment - looked more like bug bites than hives, mostly on my hands and a few on my legs. I tried benadryl also, but didn't do anything. They went away in about 5 days. I used some hydrocortisone cream on them. The nurse said they were related to the taxotere.
Karen0 -
Steve, I used hydrocortizone cream also! It worked wonders. I got these after my final treatment, and they were on and off for about 3 weeks!
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Are we having fun yet or what?
It's day 4 and I feel crappy, right on schedule! And now I'm afraid that every little itch will turn into hives. So far no big se's, just the usual ickyness, but you just never know. I'm so glad we have this board to share the journey.
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Revkat, day 4 was when my hives appeared last round (#2). It was right after I finished with my post-chemo Decadron. The hives were on my forearms, and behind my knees, and under my armpits (yuk!). That was it, though. They lasted maybe 2 or 3 days and then were gone. I took Benadryl at night so I could sleep, but that's all I did except to try not to scratch.
Today is day 3 of round #3 for me. Yesterday I felt so crummy that I was beginning to wonder when this would all end. Like you said, are we having fun, yet? Nope, not here. Fortunately, today is better. Tomorrow will tell, though.
My onco was not very excited about my hives and scalp bumps from tx #2. She said since everything was so self-limited, there wasn't anything to worry about. She suggested Benadryl when necessary (but as Steve has pointed out, that might not be enough). I took some pics of the scalp bumps to show her, and I guess I really impressed my onco nurse with my photographic skills! Everybody wanted to know how I got such good pics of the top of my head. Anyway, the red, itchy scalp bumps eventually developed "pustules", which my onco interpreted as folliculitis. She said something about a reaction when the hair tries to grow back mid-chemo cycle. She also said she could prescribe an antibiotic, but it would probably not make them clear up any faster than my switching to Johnson's baby shampoo did.
Steve, I read some other posts from women who developed hives at about the same time as Kathy. It wasn't very common, though, and I don't know if anyone found something to relieve the itching. My onco said the rashes associated with Taxotere usually develop early in the cycle (well before day 9 or 10), but she didn't describe what they looked like.
Rosario, this is totally weird I know, but when I look in the mirror, I can't really remember what I looked like with hair. It was around April 17 when mine came out, so that was, what, about a month ago? I still have a thin fringe for bangs and around the edges. My oh-so-funny onco said it looked like "male pattern baldness," and she didn't want to see me combing the long ones over the top! Ha ha. Anyway, I took some pre-chemo photos, so at least I can check to see what I used to look like. I did get a wig for free from the local American Cancer Society office--it's one of the wigs in the TLC catalog. I like the color, but the style is not "me". Hey, it was free. I haven't worn it at all; I seem to prefer scarves and caps (or nothing, around the house). I tried the wig on today, and as I was "combing" it with my fingers, it slid right off my head! I guess I need to get some sticky stuff if I'm actually going to wear the darn thing.
I need to go outside and play for awhile, just to get off my behind. I'll talk to y'all later!
otter
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Evening everyone! Just starting week #2 after treatment #3 .. I survived. I started feeling really poopy on Tuesday, by the time I got home from work, it was straight to bed. Got up, had dinner, back to bed. Called in for Wednesday, got out of bed at 1:30 in the afternoon. Taking a shower was physically exhausting, let alone mentally. Called in again on Thursday and called the doctor. Went in for labs, white counts at all time low of 1.4. Neutropenic is what they told me .. stay away from babies, children, sick people, basically, stay home. I can do that. Felt better today so I went to work. I lysol'd everything in the building, at least 5 times in the 6 hours I was there. Then I got the "your close to losing full time status due to so much time off of work." Not sure what to do about that, I mean, if I'm sick, I ain't coming to work and risking getting sicker. Makes sense to me, but apparantly not to her. I need to schedule a meeting with owner one day next week to discuss options. Honestly, I don't think he is aware of her "threat" to me, so we'll have to see how this goes.
Otter: great chart! I can barely keep track of myself, let alone everyone on here!
Sharon... sorry about the lymphodemia .. hopefully that will get better soon. So, did it just suddenly come on?
Everyone else, have a great weekend, may the sunshine, the se be minimal and may our health be good!
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