Anyone on just Taxotere and Cytoxan?
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Sandra, you're right, the oncology nurse asked today why I didn't call sooner for the breakthrough nausea. I just wasn't thinking too clearly! They ordered compazine for next time. Getting better little by little.
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Lani,
Do they give you an infusion of Aloxi? I have gotten that every time and have never had nausea. never needed to take the pills they gave me because of it working so well. If you don't get it perhaps you should ask for it and see if you can get it.
Enjoy the day, Karin
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BUNP
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Thanks, Karin, they had Aloxi in my infusion, with Emend and Emend tablets days after. The nausea didn't hit until day 5. I think it (the taxotere, maybe?) just affects some people more than others. The ER folks certainly weren't surprised to hear of it.
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Chloecat, Realize you and I are on about the same schedule. I'm on Day 11, Tx 2 T-C. My SEs have been pretty mild though. No nausea, but some acid reflux. This was worse the first time than it was this time (I've only had to take Pepcid once and then it was mostly preventively) Did suffer low WBC requiring antibiotics with the first session. One reason I think the reflux may be better this time around is that I did not take any Zofran this time, where last time I took 3 pills (and also the antibiotic). The nurse suggested I hold off because the Aloxi could continue to cover for up to 6 days, which seems to have been the case. Oddly, while Zofran prevents nausea, it can add to the acid problem. It's all such a balancing act.
I didn't get the hives this time so I think that was related to the antibiotic.
My eyes have been dried and strained feeling but so far not to the extent that I've done anything about it. Of course it may be because I've been too tired to do much more than read some days. Hope you start feeling perkier.
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I also got a rash around the infusion site.
Otter - I went in for my schedule appointment today, and they had me down wrong. So, I am every 3 weeks. My oncologist was on vacation and the nurse somehow assumed it was every 2 weeks.
I got in there today and they did my labs and I met with Dr. and she asked me if I was just there for a check up. I told her the nurse had me down for chemo every 2 weeks (although everything I had read said every 21 days). So, I get to pay for an appointment I didn't need today & I have to go back next week : ( Made me a little upset because I am paying for this myself - I am already over $14,000 and that doesn't count chemo or rads. Although, the hospital has been very kind to me - other wise I would be over $25,000 right now!
My hair started coming out today : ( I already cut the length off after my 1st round of chemo. I Now I am thinking about cutting it all off today - I just can't make myself do it yet. I never realized how vain I was about my hair....
Thanks for letting me vent, I know it could be so much worse.....
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Hi Sherry, sure it could be worse but this is bad enough. I feel especially bad for you young Moms. My two dx's weren't exactly welcomed but I was able to focus on myself when I needed to and my adult children and grandchildren were a big help as was my DH. I'm sure your family will appreciate you even more and you them.
There's nothing vain about losing one's hair. It's a real annoyance and a constant reminder. But as my bald husband, bald PS and many other bald friends remind me, only temporary. The falling out period was the worst. Dreaded the shower each day. It was actually a relief to have it buzzed and get over the messy part. All I want for Christmas is some hair.
I'm so sorry for your appointment mix-up. I can't believe they made you pay for it. Talk about adding insult to injury!
I was originally dx triple neg. For some reason, my onco had them run it again and it came back ER+,PR+, HER2-. I always intended to ask why she did that and how often it chages but keep forgetting.
I saw that you live in North Pole. We were there(Alaska as well as North Pole) 3 years ago for a cruise and land tour. How beautiful! I can't wait to see Alaska again.
Good luck,
Sandy
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Sandy,
You said All I want for Christmas is some hair. I'm right behind you on that. My last T/C is tomorrow. I just hope its filled in and length of short crew cut by then. I'll fill ok doing bald in public.
Enjoy the day, Karin
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Ms Karen and Sandy, I had my last tc on Jan 24th and now have a very cute, very short, very curly hair do. It is at the point now, where people say what a nice haircut! Most do not even know I was bald at one point! So I do believe your Christmas wishes will come true! Good luck!
Lou
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Please bear with me, I have to whine...I've been feeling wonderful since about day 14, and because our anniversary is this coming Saturday (which will be day 3 after TC#2) we decided to celebrate a week early, and went to eat at a very nice restaurant Sat. night. In the middle of the meal, I felt the front part of a very expensive 2-piece bridge jiggle. Long story short, I went to the dentist on Monday expecting him to be able to just re-glue the thing back on, but when he pulled it off, he discovered that the two teeth under the loose piece had sheared off at the gum line!! He's completely baffled as to how this could have happened, but assures me that chemo didn't cause it. However, since I am on chemo, he's refusing to do anything until I'm done!! So they put acrylic on the tops of the sheared off teeth, removed the rest of the bridge, and now I have no teeth on the bottom left jaw!! I thought I was doing so well coping with everything that has gone on the last three months, cancer dx, surgery, chemo, but this pretty much put me over the edge, and I cried for a day and a half. Hairless and toothless? Insult to injury!!
I know in the grand scheme of things, this is a minor problem....thanks for letting me vent, anyway!
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SherriM - I'm sorry to hear of your complications with your teeth. You're right - in the grand scheme of things, this will be just another part of the story you'll look back on; but it sure doesn't feel good now. This is a journey full of the unexpected, and most of us have worked so hard throughout our lives trying to prepare for things, plan for all contingencies and take care of everyone, that it's hard to take the surprise blows we're given. I too keep having unexpected complications and for the control freak that I am, it is forcing me into living a "take one day at a time" existence. Sometimes that feels okay, other times it's frsutrating. Anyway, hang in there - we'll get through it. And you can always vent to all of us - we know what it's liike!
Gina_M.
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SherriM,
I'm sorry to hear about your teeth troubles. I have just a crown that has been feeling funny since my chemo (now day 14 of tx 1). I hope nothing like what happened to you is brewing underneath. I am just starting to lose my hair, just some strands everytime I run my hands through it. Another day or two and I'm letting my boys (12 and 14) give me the buzz cut they've been dying to do. Haven't really had the side effects everyone talks about except the fast heart rate probably associated with anemia. Next tx in one week. Had an earthquake down here in California yesterday. Nothing like Mother Nature exerting her power to put the "one day at a time" into perspective. Good luck to all having tx this week.
Barbara
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Sherri--This would certainly unhinge me--especially not being able to do anything about it until the chemo is over. So sorry to hear about this unneeded complication.
I know what you mean too about it being the last straw: I've been embarrassed for years about how yellow (more like brown!) some of my teeth have become, but I haven't done anything about it because I didn't want to risk damaging the thin enamel with a whitening procedure, and didn't want to spend the money for caps either since the affected teeth are actually in good shape. It's just cosmetic, but every time I see a picture of myself smiling I just cringe. Since losing my hair, this now seems more unbearable, and one of the first things I'm going to do after chemo is spend the big bucks it is going to take to find a fix for this problem,.
And while I'm at it, I might fix a few other little "cosmetic" deficiencies!!
Wouldn't have gone there before, but after this is over, I will deserve!!!
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Slortiz: Absolutely!!! I think we'll all deserve a lot of things after this is over!
GIna: I've been working so hard on acceptance (as in the Serenity Prayer) and living 'one day at a time' (sometimes one moment at a time), and now I've decided that acceptance is like patience, be careful before you pray for it!!! LOL
CaliforniaRN: Hopefully there's nothing brewing beneath your crown...or any of the rest of mine, for that matter. Believe me, considering I only have about 4 teeth without crowns, I've wondered the same thing! I did what you're planning when I started getting 8-10 strands out everytime I ran my fingers through my hair--dh buzzed my hair for me--it was day 15 after tx1. The shedding started in earnest yesterday (day 20), and today when I was doing pre-tx housecleaning, I could hardly get the bathroom counters cleaned for new hair showing up! Some definite bald spots showing, so I may have him shave it tonight...the buzz was fine when it was thinning evenly, but now......
I'm having #2 tomorrow...thank you again Otter for keeping up with all of us--you're awesome! Last time the pretreatment decadron had me 'wired for sound', but doesn't seem to be affecting me the same today...don't even feel like I had anything! Maybe that means I won't have the se's from the TC and Aloxi? Hope springs eternal.......
Blessings to all,
Sherri
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Sherri - So sorry to hear about the problems with teeth. They can get very painful. How many treatments are you getting 4 or 6? Pray the temporay fix holds out til then.
Now for my GOOD news. Back from last T/C everything went great but I did have to get three sticks. Ouch! Other then that things went smooth. I did attempt to do an IV pole dance. I had to have a party for my last treatment. Here goes.
Enjoy the day, Karin
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In case anyone has been wondering where I've been- I too have had one of those ''set backs", "unexpected events." I had my last treatment on the 18th, was so glad to "be done." Had the usual bad days on days 3-5. On day 6, I developed a DVT (blood clot) in my leg. I was hospitalized and put on Heparin drip (blood thinner). I was taken to radiology where the clot was dissolved with TPA (clot buster) and was monitored in critical care for a day then was transferred to a med surg floor. I was discharged last night after a total of 6 days in the hospital. So now I'm taking Coumadin (blood thinner) and have those awful Ted hose (thigh high) on. So add me to the list of those who are not very happy right now.
Just when you think things are going to get better something else comes up:) But, I'm alive.
I had my consult appt. with my radiologist today, my initial appt. with simulation, etc is August 5th. I'm still feeling some chemo side effects, of course. Yes, I agree with one day at a time
Everyone, take care of yourselves.
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Sherri, I hope your teeth are comfortable until you can get your work finished.
Karin, thanks for posting your pictures. What a great smile!
Karen, I'm glad you got good care but it must have been very hard to go through. Take care.
--Lani
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Sandy, thanks for the post. I felt a lot better after reading it : ) I was originally told I was triple negative by my Dr. then I got the pathology report that said I was er- pr+ are her2-, then they sent out the Oncotest and I came back with the triple negative again. It's been rough, with things like this happening it makes me question the competency of my medical providers.
It is neat to hear that you have been up here. I enjoy the summers, but I am extremely tired of the long winters.
Thanks again, Sherry
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Hi there,
I am about the same with no node involved. I had about a 1 cm tumor grade 3 and I am triple neg. That is why I am here. I just started my TC cycle yesterday. I will have 4 cycles total, 3 weeks apart. Of course I am now worrying about things to come. I go in for my WBCS tomorrow. Boy I do not look forward to the bones pain. I have some help with my mother in law in town for the next few days but then I will need to keep up with 2 very active daughters almost 5 and 6 1/2. Thank goodness for a great neighbor support system.
I am going to look for the chemo kit thread. Thanks!!!
Lou
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RN Karen - sorry to hear about your blood clot. I had one in my leg during pregnancy 20 years ago. You may want to ask them to do a blood test for Factor V Leiden factor. It is a relatively new test that determines if you have the gene that carries a propensity for blood clots. I had the test and found that I have the gene so simply take an adult aspirin each day. My doctor said the test was important for anybody who had had a blood clot ( no matter what had caused it.) I know you don't want to think about anything else medical right now, but thought you might want to know about the test. Congrats on being done with chemo!
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MsKarin: Congratulations!! Love the pics--You're beautiful! I'm on for 4 TC tx--last one, if all goes well, sept 11.
RNKaren--I am so sorry for your setback! Looks like you're back on the road and on track...good luck on the 5th, let us know how it goes!
My hair had gotten so blotchy that my husband re-buzzed my hair to about 1/8" last night--couldn't stand to look at myself in the mirror this morning so dawned a turban with my robe. My daughter sent a box of turbans, headbands, a surgical cap (really cool) that she made, and a baseball cap yesterday, along with sonogram pics of her baby (they were awesome!!), so now all I need to do is find a few scarves and scarf bands and I think I'll be set. I bought a wig and a face framer, but in this Tennessee heat and humidity, lets just say they are less than comfy.
I'm off to tx#2, and hopefully good news from my PET scan I had last Wednesday!
Blessings to all,
Sherri
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RNKaren - so sorry to hear about the situation with the blood clot. How scary that must have been. I too was tested for the gene that could cause blood clots and was positive. (mom and a sister had blood clots). Because of this tamoxafin (sp?) is out for me as blood clots are a possible side effect. My onc put me on folic acid because of having the gene. My sister was on coumadin too after the blood clot and eventually her doc changed her to daily folic acid also. Most doctors don't like coumadin if it isn't necessary and it is a pain to be on because of constant blood tests. Do they relate the blood clot to the chemo or is it just a horrible, bad timing coincidence? Sorry that you have to deal with this on top of everything else. Good luck.
Karin- Love the pics, thanks for making me smile this a.m.
Feel well all and have a good day!!!
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I'm on Day 11 from my last Tx and have started to throw out or put away some of the array of meds that I have kept handy throughout chemo. I still am feeling the effects of the infusions with very painful hands, a fuzzy brain and some G/I problems. After my first Tx I was put on daily Protonix for esophagal pressure even though it really didn't feel like heartburn to me. I still am taking it but wonder how soon I can drop it. Any of the rest of you taking it? I plan to keep taking it until my official three weeks are up and then ask the doctor but I'm curious to hear from others in the same situation.
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Hi, all--
collector, I was taking Prilosec (also a proton pump inhibitor) for the first 10 days or so of every TC cycle because of severe acid indigestion. I took the last one at about day 11 of cycle #4, and haven't had any gastric reflux/indigestion problems since then.
Karin, thanks so much for posting the pole dance pics! Whenever I start feeling a bit glum (don't know what's causing that, but it happens), I plan to visualize your happy-dance with that pole. And, what a smart idea to wear a shawl to chemo. I kept wondering how to stay warm while keeping my infusion arm accessible, and I ended up draping a long-sleeved shirt over my shoulders. A shawl would have worked so much better.
SherriM, RNKaren, and everyone else struggling through TC: Just when you think you've got things under control, along comes another surprise!
My surprise, I fear, will be that the swelling I get under my arm and chest wall on the mast/SNB side will turn out to be lymphedema. I am getting so frustrated that I cannot wear a bra because the band digs in on that side. Binney4 and others here on the boards have suggested a compression camisole instead of a bra. I can't imagine what that will feel like, when I try to do things outdoors in our hot, humid summer weather. It doesn't matter yet, because there is only one mastectomy supply store in my whole state that carries all the sizes of Belisse camisoles and could fit me, but that store is at the other end of the state, 150 miles from my home.
Also, my dh wants to start doing some kayaking this fall. Neither of us has ever sat in a kayak, so it will be completely new. Of course I'm concerned that I will need to wear an LE sleeve and glove because of the repetitive arm motion (as was recommended by the PT/LE therapist I saw in April). Wow, won't that be fun, wearing an LE sleeve and gauntlet while kayaking on a steamy river in Alabama!
Some days I feel like I've been dropped off in a strange country and I'm expected to figure this out all on my own. Thank goodness for all the advice and encouragement we get here on the boards. Even though I've finished chemo, I still need the support.
otter
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I am going to ask to be tested for the clotting gene. My mother had a DVT a long time ago. I had one in my arm 2 yrs ago after shoulder surgery. They do relate this one to the chemo but who knows? I want to know for sure, but I don't think I can be tested for it while on Coumadin.
Everyone have a great weekend.
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Hello to All !!
. . . Read through all the posts and my heart goes out to everyone who is having complications, issues, side effects - anything that may be causing pain and grief. I too have had days when I've cried all day in total and utter despair - What would eventually get me back to a more normal state would be to remember all the brave women (and men) who have gone before me and SURVIVED and also to remember that ultimately it could always be even worse than it is - I don't mean to sound trite or preachy, but thinking along these lines was truly the only thing that could rescue me out of that horrible state of deep despair . . .
My first two Tx's were very tough with lots of SE, but I am currently on Day 9 of Tx #3 and have not had any bad SE yet - which was a very big surprise to me - so to give some encouragement - not every Tx is necessarily going to be the same . . . I think I will be going on to Rads after Tx #4 - is there an average timeframe of how soon they start Rads after chemo is done ??
Ms Karin - Congratulations on your final Tx !! I loved seeing your Pole dance pics - Now there's a Pole dance worth looking forward to - you are fabulous !!
Hang in there Everyone - I'm thinking of you All . . . !!
TC-Chickadee
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TC-Chickadee - I just came from my visit with Rad Onco. If everything goes fine and my blood counts are good I can start 3 weeks from yesterday.
Otter- So sorry to hear that you are still facing Se's almost 2 months since last treatment. Think positive thoughts. Won't say the word but there is that slight chance that it isn't your fear.
Enjoy the day, Karin
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Otter, I'm sorry you're having lymphedema now after all this treatment. Argh, you must be so frustrated. I have a couple of suggestions that might help. (I had SmartLipo on my arms last summer and had to wear a compression top for half the summer...I know, my timing sucks. lol) There's a website called MakeMeHeal that has all sorts of compression garments. I was experiencing lymphedema from the surgery. I bought a compression top from Rainey. It was very, very comfortable and lightweight. It really did the trick on the lymphedema and discomfort.
Another thing I used was the Spanx Bod-A-Bing tops. They have mild to medium compression. They come in a tank, mid-arm length and a long sleeve. Unfortunately, they only come in black and camel/brown. They do work really well and you don't feel 'squeezed' in at all.
Hang in there!
PS: They both have expedited shipping.
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