Starting Chemo in Nov. 2011...anyone else?
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Quaatsi- I totally agree- superman couldnt handle this does! yes just taxol..the research say 20mg of dex 12 hours prior to taxol dramatically reduces the risk of allergic reaction..I never took the dex on the days following AC and I DO NOT plan on taking it again..I will take my chances..there has to be an epi pen handle right??
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WaveWhisper.. I want a little bell next to my bed..lol
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bethu77- get well soon Beth! Thinking about you and your recovery. {{{HUGS}}}
Kelley & Quaatsi- I am starting 4 tx of taxol next week (JAN 11th) & they are having me take 20 mg dex 12 hours & again at 6 hours before infusion. So I will be receiving 40 mg before tx! I was told it was to elminate the possibility of a allergic reation to the taxol additive. My guess is that each breast center or MO has different protocols.
I have been freaking out over some things I have read on potential side-effects of taxol. I calmed my nerves my calling the MO office and getting clarifying info (I still find Taxol scary). For me, I had to understand what was being prescribed and the associated benefits and risks. Once I discussed it with muy MO, I had to trust that the final treatment decisions are in my best interest.
Gentle hugs to all
Rose
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I find it interesting (and alarming) that most of you have been given steroids to take the day before starting Taxol. I'm starting next week and my MO did not prescribe anything. I'll be getting it in my pre-meds like with AC, but no mention of taking it earlier to prevent allergic reactions......now I'm freaking out! I've noticed my anxiety levels have been up DRASTICALLY the past 2 days. I've been rethinking all my diagnoses and treatment decisions. Pulling out all my path reports and records, re-Googling studies and treatment options....Aye, aye, aye.....I'm going to take a Xanax now. Maybe that'll help
Kelleysgroi- I hope your treatment is going well today. Praying for minimal side effects for you!
Bethu77- hope you'll be feeling better soon!0 -
LOL about shaving legs. The hair on my legs got so fine and non-existent during the first part of AC that I didn't have to shave...now I have long fine hair growing back on my legs and I'm NOT shaving it. It's the only hair on my body that seems to be growing and weirdly I find it very hopeful!
Claire
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Claireinaz- good for you..grow that hair!
Kim137- breathe- I find taking a little break from reading up on what "could" happen helps a little..my tx is in an hour so I will hopefully report back with NO issues and help calm your nerves.
TexasRose- yes I was told the same thing about the steroids re allergic reactions..my nurse navigator said in 10 years she has never seen anything severe..some redness, heart palpatations, sweating, and an impending sense of doom feeling..that one made me laugh..do we need to feel any worse than we do??? Doom?? Really? Good Lord!
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Kim137 and all re: steroids,
I only take it as IV the AM of chemo as one of the premeds. I also get something to reduce heartburn. No steroid the day before. The first week, I am going onto week 9,the dose was high and felt like I was too fidgety, so the dose has been reduced twice since then. I don't feel like I am climbing out of my skin any longer, but am eating everything not tied down in the house. And to make matters worse my 18 ds was jsut home for 2 weeks so the house was laodedwould foodwe would not normally have here.
Bethu77, hope you are home soon and doing MUCH better.
I have been really down the last two weeks, have had issues with depression for a few years anyway (loet me describe the last few years even without the dx, so I amsure the steroids did not help. I also realized yesterday as we all retyrned to routines, ds back at boarding school, dd back in school,my regular work schedule,that I feelbetter with the more active I am. I have never done well with a no set schedule sort of schedule. So good to feellike I am not losing my mind.
Wishing all a restful and SE free week.
Nel
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LADIES...taxol.went great No allergic reation and I slep 4 1/2 out of 5 hours ..benadrly through IV is a nice ride.
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With A/C, I took Decadron in my IV bag and pills for 3 days after treatment. I also took 2 Prednisone after the Decadron. I was told with the Taxol treatments that I would NOT be taking steroids. I am excited about it.
Yes, I do get the Neulasta injections with treatments. I still got something that took me down. I am feeling better. I have been pumped full of fluids and antibiotics. My blood pressure is low but they have said that is because I am just relaxing. I hope so. Can't wait to get home!
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YAY Kelley!!! So glad to hear it went well!! I hope the next few days prove to be wonderful as well! You are another dose closer to the finish line!!!
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Kelleysgroi- Oh no
not thoughts of DOOM!! Haven;t gone there yet---but I am ready to fight this new demon if it's head emerges. Bring it on DOOM, I have fought tougher battles & won.---I am ready! Glad to hear your 1st Taxol tx went welll without incident. Yeah for no allergic reation!
Gentle hugs to all
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So I missed the support group because I was so loopy from the benadryl I couldnt drive..hopefully next week!
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Bethu77, hope you are home by the time you read this! So sorry you've had such a rough time.
Kelleysgroi, glad the day went pretty well! (always loved benadryl...!) One step closer, baby!
TexasRose, LOVE your kick-butt attitude! I've had a down day, and that made me smile! This is such a battle on so many levels.
Claireinaz, maybe you can start braiding it soon!
I've had a mixed day, working this morning and feeling pretty good. Then, needing something for nausea by noon. Blech. Hit a wall by the middle of the afternoon and had to stop. Having a tough time managing my diabetes, no matter what I eat, and that's not a whole lot some days! I know that is temporary, but still discouraging...just one more thing to juggle.
Sorry I'm complaining, but I know it's safe here! As wonderful as my family is (and they are great), they don't need to hear every complaint. Glad I'm not alone and have you guys.
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maxkolbe, I'll be thinking of you tomorrow. What time is your tx?
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Hi chemo ladies,
Finished 2nd taxol; no problems at all so I can step down the steroids I take the night before--in 2 more tx I won't be taking them at all. I didn't have to take any by mouth for AC--just IV. I don't like them!!! They have an effect on my temper that isn't so good...after a 45" drive to chemo having gotten up early to get there in time (it's a state two-lane highway with lots of switchbacks--30 miles takes an hour or more sometimes) the front desk person told me there wasn't anyone to do labs that week and didn't anyone call me about my chemo appt? I said no, I always get my labs here before chemo and she then said she didn't know how I'd be able to do that today.
Steam started pouring out of my ears, I said "I'm VERY angry about this, because no one called me to let me know..." then she sent us back to the chemo area and when I voiced my anger again they said all I needed was a CBC (turned out fine) and they indeed DID have a lab person to do that. I didn't need any other blood work.
So I wound up getting chemo and staying on track--I don't want delays--and the front desk person was wrong--to tell me that. She should have just sent me back and let me talk to the nurses. Anyway, my O 2 sats were less than 100% probably because of my heart beating so fast!
I may have started a reputation for myself as a "bad patient"...but I heard that those of us who ask questions and want to know what is going on have better survival outcomes. Don't be passive, IMHO...
I think I'm still steroiding a bit, I just read the above
As for the leg hair, I'm seeing how long it will grow! And I have some wild hairs on my crew-cut head that my hubby missed when he shaved me...I'm keeping them, too.
Claire
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grandmaV, how are you doing? have you gotten any relief or answers?0
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Andimom03- We all need to vent and this is a safe place to air our fears and frustrations. Feel the wings of all your sisters surronding protecting and comforting you throughout the day. We can be empathetic because we are all in this together. All for one & one for all. {{{HUGS}}}
bdavis- That explains the no rads, Interestingly enough, I was given the option of a lumpectomy but chose the BMX---good call on my part, since they discovered a hidden tumor in another quadrant of my BC breat that did not show up on any of the mammograms or breast MRI or CT scans. Pretty scary----I would have still had undiagnosed BC after a lumpectomy. Yikkes!!!!
Healing vibes and a restful night for all
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Texasrose, so thankful for your decision. I have a different type of cancer which is usually multifocal, My 2nd opinion felt strongly that I should try to save tissue, especially my left breast. I followed my doc's lead, especially when hearing what followup and reoccurance is like for this type of BC. VERY good call on my part...right side original tumor was 3x what they thought with cancer throughout the breast. Left had some cells that were precursor to cancer. I would have lived with biopsies and MRIs every 3 months and another surgery. I'm so thankful for the wisdom of my docs. MANY are fine with lumpectomies! Don't freak out, anyone! I'm just so grateful for where I am right now, as tough as it is.
I do find it amazing how different many txs are for each of us. So many factors play into it. If I weren't so involved, I would probably find it fascinating!
My night was restful...just short! Can't seem to sleep past 5:30. But mornings are my best times, so it's okay.
phgraham, how are you hanging in there? Haven't heard...
Have a good day everyone. I have an expansion today. Blech.
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claireinaz- steroids make me a freakin monster- I get so pissed off at everything..as for being a "bad patient"..I freaked on the nurse last week when she said she had to change my chemo from Wed to Thurs..what??? no freakin way??? DO NOT mess with my schedule..do thesepeople not realize that I start counting the days the minute I leave the infusion room? Do not add another day to my counting!
Andimom03- I cant imagine managing diabetes with this- some days its so hard to eat anything other than a handful of potato chips to hold back the nausea..I find the salt really helps..most days although I am hungry I can not for the life of me figure out what I want..and if I do get something in my mind..we damn well better be finding that for me to eat..lol..
I was worried about sleeping last night with all the steroids streaming through after taxol yesterday..but..I made myself a benadryl/xanax/lemon water cocktail before bed and that did the trick..I think benadryl may be my new drug of choice..add it to the bottle of pills by the bed side table..the clock barely has room over there any more with all the rest of the meds...welcome to cancer treatment..
bethu77- sounds like you are feeling better?
nel-i can relate to the heartburn. started about day 3 with me on the AC and lasted several after that..nothing seemed to help. I almost feel like the onc poopoos most of these side effects as they are not serious and I can still function. You sre not losing your mind! I often feel the same..my onc yesterday explained it as aside from being poisoned, having our bodies put through a tremendous amount of physical and mental stress, and in my case anyway thrown into instant menopause, we are bound to feel a little cuckoo! Hang in there!!!
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yay kelley! glad to hear it went well.
To Kim and all about steroids-- amazing the variations- not just when but how much. My onc said only on day of chemo and not before or after and the first dose when as high as 10 mg dex but that might be weight- based. I got 8 the first time because I resisted the idea at all (I got 180mg --not a typo 180 mg Prednisone for 6 months, 10 days on/10 days off and I can tell you how awful that feels!!!).
The second tx was 6 and when the nurse said you know, you can always refuse..... I jumped on it. What they do, I am told, is keep some hydrocortisone ready for any reaction which usually happens right there and then.
Well, I am off to my 9th tx in about 2 hours. I am always a bit wired that morning. Today, a friend is taking me. Feels hard to have a friend drive the distance (it is 45 minutes across town) and stay with me the day but she has been wonderful and does not seem to mind. people are amazing....
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kellyesgroi--agreed about messing with my schedule (or even intimating they might). Don't they understand the psychological and emotional preparation we have to go through each time we walk through those chemo room doors? It's not exactly the same as rescheduling a dental appt.
Well, I blame the steroids on getting five hours of sleep last night and creating nearly a whole syllabus in 2 hours for a university class I'm teaching (got up at 4 a.m.). I have had NO allergic reaction to my taxol tx (two so far). I'm down to taking 12 mg of dexamethazone this coming week before tx #3, then down to 8, then 4, then nothing. They already give me this steroid in my IV on the day of tx too. Can I ask to stop taking this sh*t by mouth at least? I hate it! The anger and the water retention/weight gain/fattening face is starting to happen now, and I do NOT want to gain weight since higher weight seems to increase recurrence.
Any suggestions anyone? What about lowering the oral dose myself anyway?
I'll tell you, I never had a problem taking medication when needed but I am beginning to feel a need to avoid taking pills unless it's an emergency. So tired of being awash in medications.
Claire
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Claire...shhh..I never took the post treatment steroids with the AC..I just refused! I felt like crap..the neulasta killed me and the steroids made me want to chew my skin off. I would ask if you can stop them..you are taking them before tx, in your treatment, and after??? That seems like way to much..I would stop the after treatment on your own..you can always start them again if there is a reaction but it seems unlikely..hahaha listen to me..Doctor Kelley!! Do you have a nurse navigator- I have this one who is like my advocate..when I dont like what the onc says I call her for advice..it is very helpful and she has some great ideas for "playing with things" ..she is the one who suggested I stop the post ac steroids unless I was nauseated. I'd rather be nauseated then deal with that constant agitated state...let us know what you decide I am the steroid induced energizer bunny right now so I am off for a long walk in the cold!!!
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Hi Kelleysgroi--no steroids afterward, but geez....if I'm already getting them in my IV why by mouth? Especially when I was told because I had no allerfic reaction they'll bump my infusion time up to an hour from now on (it was taking nearly two-three hours the first two times).
I may just choose to cut back on the orals myself--ha ha, I didn't hear it from you!!!. I am not normally an angry aggressive person and hate the way I feel. I can't operate on 5 hour sleep and don't like the extra "buzz" some women say they enjoy (I'm already kind of a hyper-type A person anyway; I don't need extra energy!).
Maybe take it to 8 mg next week and 4 the week after...or none.
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Hi ladies,
I had a really bad day yesterday with this tinnitus. Went to onc.s office, Oncs not there this week, so saw his PA. She was trying to reassure me that this might be temporary, but she wasn't very convincing. She said I have 3 things other than the carboplatin, that might be causing it. I had the very large dose of steroids, low potassium and I'm anemic. She thinks once these things resolve, my tinnitus may go away. She wasn't very convincing, because in the next breathe she said Onc will take me off the carboplatin. She said she had been working there 10 years and saw only two cases that were permenant and they had been on carbo for 6 -12 mos., but I got the feeling that she was just trying to make me feel better. She gave me a script for ativan and I started taking that last night and it has calmed me and I was able to sleep last night. I don't relish getting addicted to ativan, but I have to have something to help me cope with this noise. I'm also listening to white noise (static). I have a CD going all the time and it masks the sounds in my head. Its a little better today, I can at least function, and enjoy my dog and other little things that make life worth living. I go in for herceptin tomorrow and see my Onc. on Monday. I will talk to him about it then, and see what can be done. I will not take any more steroids, so if they can't do the tx without it, I'm done with chemo. I can't take a chance that the noise will get worse. I couldn't live with that.
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grandmaV, this is breaking my heart for you. i can't think of anything worse than the noise you're experiencing. you can refuse steroids if that's the problem. they can't force them on you, in my opinion. take the ativan as needed and if you're careful, you shouldn't get addicted. maybe tomorrow the chemo nurses can give you some ideas on what's causing it. stay connected here and let us know how you're doing. i'm thinking about you.0
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grandmav- Im so sorry- as if our heads are not busy enough with all this crap you have added noise! I agree with YaYa5..skip those steroids if that is the culprit. I hope the onc has some suggestions as I'd hate to see the chemo end too soon for safety. Take that ativan as needed..whatever brings you peace..
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Claire- not sure if I already admitted this but I was supposed to take 20mg dex the night before my taxol..I know what that crap does to me so I almost didnt take it at all..I finally did take some but I only took 8mg instead of 20..next tx I am only taking 4mg..I am type A also..I can drive myself crazy..I dont need any help for steroids...
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GrandmaV ~ So sorry you are still having tinnitus issues. I just wish your doctor had been available. I know from many years of dealing with it that it is scary and to be honest I was freaked out by it for so very long. I will pray that it resolves so that you can get the number of chemo treatments that would be best for you. I am hoping you can skip the steroids if that is the issue and finish your treatments. I remember the spontaneous way the tinnitus came on and it is something that just has a way of making you feel you might be losing your mind. I didn''t (at least not yet...ha! ha!), but I hope you can resolve this soon and it is very temporary for you. Keep the faith and so will the rest of us that you will be relieved of the symptom very soon. Just to add, I had to take steroids for a year and a half for an immune sysem problem and the medication did not affect my tinnitus (better or worse) during that period of time. It truly has beeh a mystery for me. Linda0
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YaYa, and Kelley, thank you. It's good to know you care.
Linda, it does make you feel out of your mind. It makes it difficult to read, watch TV, enjoy life in general. The level it's at today, I think I can cope with, as long as I have my static going and the ativan.
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claireinaz- The steroid "plump" is temporay---- water weight. I am trying to maage it by watching calories in and calories out. Trying to eat as many unprocessed whole foods as possible & exercise (as much as I can) each day--even if Ican only walk. I'm 50% through with chemo (4 of 8tx) & I only gained 6 lbs. I hope to keep the weight gain to the "steroid" water weight---- oly time will tell if I am successful. A real bummer that we have wrry about our weight during this ordeal. Ughhhh!
As a side note I was naive enough to beleive that I would lose weight during chemo, so I bulked up befoe by gaining 6 lbs (I was a tad bit skinny to begin with).. Imagine my surprise when I was told that most women gain between 10 - 20 lbs. Double Ughhh!
Gentle hugs for a zero weight gain day!
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