April 2010 starting chemo

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  • JenC
    JenC Member Posts: 382
    edited June 2010

    Laura M - Sorry to hear about your stomach. That has to be painful. They postpone me when I have this because it is infected. They actually took a culture today to see what the bactera is that keeps forming. Yea it sucks. I have 6 AC's left and just want to get them overwith. I guess I at least get to look forward to a few more weeks of feeling good:)

    Hope everyone has a great day.

  • curious_one
    curious_one Member Posts: 17
    edited June 2010

    Emme--Really glad to hear that IV fluids are helping you so much!

    Has anyone had the same GI symptoms that I've had with the AC treatment?  I haven't had either diarrhea or constipation, but I have had pain across my midsection just below my navel.  This lasts for several days, starting a few days after treatment.  It's almost like a crampy pain, and immodium seems to help somewhat.  Any thoughts/suggestions?

    Over the last 3 treatment cycles, I've found that it's best to sleep when I can over the first week.  I feel much better the second week.

    Only one more AC treatment to go, then 4 T (every 2 weeks), weekly Herceptin, AI, more surgery, and radiation.  The main course of treatment won't be complete until November.  It seems endless, but day-by-day will get me there.  This will be the year of the lost summer, I guess.

    Great news that lots of you are starting to get to the end of your treatment!!

  • DancerMel28
    DancerMel28 Member Posts: 122
    edited June 2010

    My gosh how time flies!  It feels like only yesterday that I had my 2nd TC but it was actually 2 weeks ago - so only have 1 week left before #3.  I feel like I've still got so much left to do before I begin the cycle again.

    I've actually started to worry a bit - I've had a reaction to the taxotere both times so far and I'm really hoping that I dont' have a 3rd reaction (it's just not fun!!).  My Oncologist has actaully lowered my dose of steroids too - instead of starting the mornign of the day before, I now only start the night before. SO will only have 2 doses before my chemo.  I had a reaction the second time even though they put extra steroids through the IV before starting.  So I really don't know if I should contact my Onc to question the lesser dose (I only found out she'd changed it when the pharmacist brang my meds up to me during my chemo), I think she changed it as I've broken out in a rash in the week after my first treatment which she thinks was caused by the steroids.  Who knows!!! 

    Anyway - I guess we'll see what happens.  Hope everyone's doing ok today.  Smile

  • ellen_1959
    ellen_1959 Member Posts: 5
    edited June 2010

    DancerMel

    We are on the same cycle it seems and I had a bad reaction to the Taxotere for my second treatment. It was an immediate reaction (within seconds of hooking me up to Taxotere) and I started to hallucinate(scary- I hallucinated that the room was filled with tiny bubbles -wierd~!), couldn't breathe, was extremely nauseous and dizzy. The nurses gave me hydrocortisone and then it subsided An oncologist told me that the steroids may have caused the hallucinations. I'm not sure if I should request less steroids this time?  According to the nurses, the reaction (except for hallucinations) is common and usually doesn't happen on the first chemo but the 2nd and 3rd. But everyone is different.

    I haven't been able to talk to my oncologist about this -  I hope I get the chance. I can't believe they changed your meds and didn't even discuss - I have been very frustrated by the lack of availability/communication from the oncology staff. I don't know if all hospitals are the same but it is discouraging.

    I am coming down from the steroids today and somewhat depressed - tomorrow will be a better day!!! 

  • SGJ05
    SGJ05 Member Posts: 73
    edited June 2010

    Preparing to leave for chemo. #4 of 6!!! Praying it is as uneventful as the last 3!!!

    And to all the girls fighting stitch absess' (how is that plural?) I am keeping my fingers crossed that they clear quickly, so sorry you are experincing them!

    Emme- Fluids rock, don't they? I went on for fluids last time and it helped tremendously. I am going to ask to continue doing it after every chemo. My nausea went down dramatically as compared to the last 2!

    Raerae--Just saw your post about your niece, so cute!! Sure would be nice if we could really do that, LOL!!

    Good Luck to all the ladies who have had or are having chemo. this week:) May your side effects be minimal or non-existant!!

  • tpcjkk
    tpcjkk Member Posts: 67
    edited June 2010

    Hi,

    I had my first Taxol infusion today (finished 4 AC--will have 4 Taxol, once every 2 weeks).  It took almost 4 hours from start to finish.  I got pre-meds of Zantac, Benadryl and 20mg of dexamethasone.  Benadryl made me "loopy" almost immediately, but once the Taxol went in, didn't have any reaction.  Nurses took my blood pressure every 20 minutes.  By the end of treatment, I was so sleepy...that's the Benadryl.  I was told I can expect the steroids might make me more hyper for a couple days.  I don't have to take oral Emend or dexamethasone like I did with AC; I will use Zofran and/or Ativan if I have nausea; so far, no nausea or queasiness, but I do have a strong metallic taste.  On days 3, 4 and 5 I will do Neupogen shots.  After the next round, I will do only 2 Neupogen, then hopefully quit for good.  Neupogen has really been helpful for me; all my labs have been normal so far.

    I am sorry to hear about all the SE's, issues, and problems of our April members...but please keep using this forum to vent.  It's so helpful to get it off your chest, and I know for myself that I feel bad about venting to my husband, family and friends...my husband, especially, just feels helpless.  As I have come to learn, the "Sisterhood" is really, really strong, and there is no lack of encouragement and support to be found -- even sometimes by total strangers who have battled BC.  Hang in there!

    ~Julie 

  • DancerMel28
    DancerMel28 Member Posts: 122
    edited June 2010

    ellen_1959

    I've had a reaction both times so far - the first one I had this awful feeling start in chest that moved down to the pit of stomach, I went bright red, my heart started beating really fast and had shortness of breath.  They stopped the drip gave me extra shot of steroid and when they restarted I was fine.  THe second time I said to the nurse I hope I dont' react again, and before starting it they gave me the extra shot of steroid first, but I still reacted - I got it stopped quicker this time as I knew the 'wrong' feeling straight away so alerted the nurses befroe it got too bad. Then they gave me some phenergen and aagain when it restarted I was fine. 

    THey told me initially that you can have a reaction the 2nd time but very rarely the 3rd. But after I reacted the 2nd time they said if it happens again they may change my dose (which I sorta don't see the point of as I'm only having 4 cycles - I figure they may as well just leave it).  I just hope that the reaction doesn't get worse each time.

    My Oncologist has been really good (apart from the not telling me she changed the dose of steroid), I always have an appointment on the day of my chemo for review before I start my chemo that day so can bring up any issues then.  I have numbers I can ring 24/7 if any side effects which I've only had to use once and they were really helpful. (I'm in Australia not sure if you're in states like a lot of people??).  My hospital where I'm being treated is a specialist hospital for cancer patients so they seem to have a few extra things in place to help which is good.

  • Char2010
    Char2010 Member Posts: 532
    edited June 2010

    I had an allergic reaction each time (3 times so far).  No steroids the night before, just before the chemo and once I got the reastion.  One more to go.

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    I start my Taxol on Monday, every other week. I'm hoping I don't have the reactions some are having. I have some dexamethasone to take at home 12 hours before my infusion and 6 hours before. (That'll be 11pm and 5am.)  I'm hoping that keeps things at bay. I don't know if there will be additional pre-meds just before. I believe I'll be taking the Neupogen during each cycle, but maybe if my numbers stay good I'll get an early reprieve.

    All the medical stuff is going as well as could be expected, but dealing with the HMO and the company that handles disability payments for my employer has been such a pain. Hey, I'm the sick person, and *I* am the one who has to keep calling both sides to make sure my records are being sent so I can get my disability payments? Sheesh.

    Karen

  • SGJ05
    SGJ05 Member Posts: 73
    edited June 2010

    Made it through chemo. #4, but as you can see the streiods have me up VERY early,LOL. Anyway my onco. switched me to 5 days of Neupogen rather than 1 day of Neulasta due to my possible kidney disease and I start today. Can anyone answer a few questions for me?

    1. How is the bone pain on Neupogen and does Claritin help? It helped me tremendously with the Neulasta.

    2. How much is it? I know we all have different insurances and means of payment, but anyone wiling to throw an approximate out? I swear I won't hold you to it, lol--just trying to get the just?

    3. How bout injection pain? And where have you self administered? I was thinking stomach or thigh?

    Thanks in advance for your help:) I hate having to switch, but then again, I hate the bloody urine and flank pain for 2 weeks even more,LOL:)

    Have a great Friday girls:)

  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    SGJ05

    1. For me the bone pain lasts about trhee days, with or without Claritin.

    2. The V.A. is treating me. They list the cost for seven Neupogen shots as $941.92

    3. The pains is just a slight stick. The first shot was the hardest. You give it in a fatty part.  I give it in my stomach. For me it is easier than the thigh.

    Lee 

  • susiesue
    susiesue Member Posts: 68
    edited June 2010

    I am starting my Taxol next Friday....I feel anxious reading about all of the reactions. The only premeds I will get will be at the hospital prior to the Taxol, nothing to take at home......anybody else not having premeds? 

    I feel like I'm trying to get a second wind......I was so focused on the AC treatments, that 12 Taxol plus radiation suddenly sounds overwhelming and that it will take forever.  I'm going to try and not worry and just wait for that second wind to kick in......

     take care all

  • arubajan05
    arubajan05 Member Posts: 140
    edited June 2010

    Hi Ellen_1959 and DancerMel~ I, too, am on the TCx4 and have my 3rd treatment on Monday. I am in San Diego, CA and each time I have an Onc appt right before my chemo. That is very reassuring for me.  We discuss how everything went with the last cycle. This past Sunday (Day 14 after Round 2) I got a bad allergic reaction to something.  I went to an allergy specialist on Tuesday who put me on Steroids and Xyzal which finally calmed everything down. By the time I went to the specialist I had "golf ball sized" hives on all my extremities and incredible itching (Benedryl had kept it "at bay" Sunday night and Monday, but Tuesday morning it had taken over!) My question is do you think this could have come from my chemo treatment even though it was so late in the round?  I have never had anything this bad. Only 2 reactions in my life from bug bites. I shelled and at shrimp on Sunday but think the itching started before that at my knees and elbows, not certain though.  On the venting side of things... yesterday was the first day I felt good at all since my last round and I am feeling a bit cheated, because I know Monday it all starts again!!!! ARGH..... Sorry to complain, but I am with Julie, my husband is feeling helpless and certainly stir crazy since I have been homebound most of this session... Thanks for listening!

    Hugs to all and hopes for a great weekend free of SE's!!!

  • saralmom
    saralmom Member Posts: 329
    edited June 2010

    Hi all.  Recovery from AC #4 was about the same as #3.  Just a ton of fatigue.  But now I have a few moth sores that are bothering me - one particularly that is at the back of my tongue near my throat - hard to swallow, can't move my tongue without pain.  Hate it.

    Just saw my onc for an appointment before my first Taxol which is Monday.  She was worried about my counts again, but thank god no transfusion, which is what she was preparing me for last time.  She almost postponed my tx b/c I haven't "rebounded" fully, but then she realized the tx is Monday and not today, and she thinks I'll be fine by then.  She pretty much blamed all my current issues - throat, hand color, nails brown, on the AC and says that my weekly Taxol promises to be easier - but for the chance of neuropathy and losing nails.   

    susiesue - I won't have premeds for the weekly Taxol either.  And no nausea meds or Neulasta shots either.  Those things alone make me feel better - but also a but nervous.  Like I won't have a safety net.  But I guess anything can be added later if needed. 

    She did also say that if I react to the Taxol during the tx, it gives them an excuse to use an even better drug so reacting is not so bad.  It's called Abraxane (sp?).  She said it's a great drug.  Has anyone heard of it?

    Hope everyone if feeling good today.

    Sara 

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    SGJ05: I've done Neupogen for each of the four rounds of AC I've had. The first round, I did 9 days. My white blood cell counts went way above the normal range, so the onco had me drop to 5 days for each of the next three rounds. It really does seem to help, as all my numbers are still good.

    Since I had to do several days rather than get a single shot, I learned how to do it myself. It's really not hard to do, although I'm not crazy about it. I have to work my way up to sticking the needle in, but it doesn't hurt that much. I'm just a wimp. I do recommend that you take the medicine (I had pre-filled syringes) out of the refrigerator about 30 minutes before you inject. It seems to lessen the discomfort of the fluid going in.

    I used my stomach and legs. I have a pretty big belly, so that actually worked well for me, but the thighs did OK. Since I had to do several days, I figured it would be better to use more sites.

    Since I just had to pay a co-pay for each round worth of meds, I don't know the cost if you had to pay for it yourself. I believe it's quite expensive but maybe not as bad as Neulasta. A wild guess from things I've heard might be a couple of hundred vs several hundred per injection, but you may just get one Neulasta vs multiple Neupogen.

    The bone pain has been the downside for me. It has been significant. The first round I did it, I was surprised at how bad it was. Over-the-counter stuff didn't help, so I used some vicodin I had left from my surgery. That works much better for me, but I have a low pain tolerance, I think. Each round the pain has been a little different and lasted for a different amount of time. Its favorite spot seems to be the low back/pelvis and the sternum.

    But compared to risking infection and delay of treatments because of low blood counts, I believe it's worth it for me.

    arubajan05: I'm sorry to hear about the allergic reaction! I hope that gets figured out. It seems like most people have their reactions closer to exposure, so maybe it wasn't the chemo.

    saralmom, we're still in sync. This round (my 4th and last AC) has been the worst for mouth/tongue pain. I used up the latest mouthwash concoction, but it didn't help as much this time. And I feel like I'm really thirsty all the time, but my mouth still feels dry after drinking. I tried a diet Coke this morning and it seemed to help a lot more than the plain water or ginger ale I've been drinking. I've used Biotene off and on, but maybe I should be more consistent. It's supposed to help with dry mouth.

    I did get the OK for the acetyl L-carnitine trial, so I'll start getting that on Monday to go with my Taxol.

    I hadn't heard of that other paclitaxil, Abraxane. Since I was told my treatment would take about 4 hours, I must be getting the regular paclitaxil. Maybe this other one is expensive so they don't use it unless the person can't tolerate the regular kind.

     Karen

  • DancerMel28
    DancerMel28 Member Posts: 122
    edited June 2010

    hi susiesue - (unless I've missed things....) I think most of the reactions have occurred from Taxotere not Taxol, i think they're from the same fmaily but not are not the same.  Just know that in my experience the nurses are absolute PROS when it comes to dealing with this and have it sorted out before you know it so try not to worry too much.

    arubajan - I'm so sorry about the reaction! I've had some itching around the back of my heel this time but I think it's more from the dry skin (I must admit I haven't looked after my feet as well as my hands when it comes to moisturising - I've been pedantic when it comes to my hands but need to extend it to feet also!). Hopefully someone can give you some answers about if it's chemo related or not - I guess so much is going on with our bodies that it could be a delayed reaction who knows! Hope next round is more uneventful for you.

  • tpcjkk
    tpcjkk Member Posts: 67
    edited June 2010

    One thing I thought worth mentioning for those about to start Taxol...I was really, really drowsy after my infusion and absolutely incapable of driving.  No one had mentioned this to me before, but luckily my husband takes me to all infusions.  This might be just something that happens with the dose dense Taxol (every two weeks) since the steroids/antihistamine combo that is given is probably stronger than the weekly version.

    ~Julie 

  • Emme
    Emme Member Posts: 205
    edited June 2010

    Hi Everyone!

    I have been catching up on the post for the past few days.  I have been tired, but trying to work a few  hours in the mornings. 

    I am going to try and post a few answers to some questions you ladies have had.

    Neupogen Shots

    I have used these thru both rounds of chemo.

    When I was having weekly Taxol Tx I used 5 per week and they kept my counts up.

    This time DD AC, I use 8 per cycle.

    The bone pain gets bad for me on day 9.  It is the worst for me in my breast bone and lower spine/pelvis.  The pain is a throbbing pain.  I use advil or darvocet.  It doesn't take it all away, but it does help.  I keep reminding myself that it means the shots are working.

    I am not sure of the cost, my copay is $30 for 5 injections.

    I inject myself in my belly too Laughing I let the syringe warm up for at least a half an hour prior to administering the dose, it really reduces the stinging sensation.   I hope his information helps.

     ***************************************************

    Before I started each different kind of tx I had to meet with one of the Chemo Nurses to have a chemo teaching.  At that time the nurse went over each medication I would be receiving.  They went thru the possible SE and gave me all kinds of information on what to expect during the infusion.  At my teaching for the Taxol, I was told that I need to have a ride because I was going to have benedryl.  And boy i was glad that I did have a ride!  That benedryl knocked me for a loop!

    **************************************************

    I haven't had any sores in my mouth. I have cracks in the corners of my mouth.  Almost like chapped lips except my lips aren't chapped.  There are just cracks in the corners.  It hurts like hell...and I'm not sure what to do for them.  I keep putting on chap stick.

    I have developed a bad taste in my mouth too.  My mouth tastes like I have been sucking on a wooden spoon.  YUCK!  For those of you who have a metallic taste try using plastic utensils, that really helped me last time.

    It made me feel better when I keep reading that everyone else is getting increasingly fatigued on the AC as our treatments progress.  It comforts me to hear I am not alone and that what I am experiencing is normal.  Thank you so much ladies for sharing.  This board has been such a support to me.  Some days when this battle seems so huge, so overwhelming, I read these posts and find encouragement and strength to forge forward.  God Bless.

    Emme

  • Julia123
    Julia123 Member Posts: 21
    edited June 2010

    Hello all...I just had my first of four dose dense Taxol on Wednesday, and just thought I'd check in. I'm the one who had the issues with the steroid on the first A/C - but the good news with Taxol was that, even tho the steroid is required to ward off reactions, at least I didn't have to take it four days straight! I felt some unpleasant effects from it, but managed through it. The worst part of Taxol so far has been rather intense shooting pains in my back/hips, starting with day 3. Anyone else experience this? Even oxycodone wasn't doing more than taking the edge off. It seems to be better today (day 4).

     As others have mentioned, was incredibly drowsy after the long, grueling treatment (four + hours total), urgh. Came home and passed out by 6:30 p.m.

    But, as others have also mentioned, I find that I am just a bit more tired each round as they go on..my body is getting weaker....thank God there are "only" three left. This is all so scary sometimes isn't it? Each new symptom, drug and side effect, and then also, seeing others around you who are having worse problems at the onc office sometimes.

    How is everyone else who started Taxol doing? 

  • kad22
    kad22 Member Posts: 191
    edited June 2010

    Hi All,

    I wonder what the difference if between my 12 weekly doses of Taxol and that of the dose dense of 4x? Anyone know? Other than it being a lesser dose of course but why do some of us get the 12 wks and other the dose dense? I think I would rather the dose dense and get it done and over with than my 12 weekly ones I have to go through - yuck! I still have one more dose dense of AC next Friday sometimes the waiting of 3wks seems too long for me. Don't get me wrong I love feeling better this last week (almost normal) but I just want to get it over with!

    Hope everyone has a great week ahead! ((Hugs))

  • susiesue
    susiesue Member Posts: 68
    edited June 2010

    kad22......I think that if you are triple negative they tend to give you 12 weekly Taxol.....and I agree 12 weeks sound like forever.

  • saralmom
    saralmom Member Posts: 329
    edited June 2010

    I am actually triple positive and getting the 12 weekly doses.  I have been wondering about the difference as well...

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    I'm getting the Taxol every other week x 4. The onco didn't really say why, just that she thought I would "tolerate it" well. That could mean anything, I guess, from general health to, ahem, abundant body weight (that would be me). I'm ER+ and HER2-.

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    Hey Caltex, I don't know what kind of injections you are giving yourself.  When I was pregnant I had to give myself shots in my belly twice a day.  Even though I used to work in nursing, I COULD NOT stick MYSELF.  It was like my hand froze.  A friend who was diabetic gave me this fabulous little auto injector.  You just load the syring in, cock it, then hit the trigger.  It sticks the needle in automatically.  It just made all the difference.  It was like it tricked my brain.  Just a thought for you ladies that have to give yourselves shots.  Good luck!  I'm starting chemo June 11 and have learned lots from your posts.  Thanks!

  • Emme
    Emme Member Posts: 205
    edited June 2010

    Hi I was wondering if any of you are thinking about reconstruction?  I know I don't want to have nipple reconstruction. I originally thought I wanted to have my nipples and areola tattooed on. I had a breast reduction a few years ago and the surgeon used the same incisions for my mx( they look like and upside down capital T.Now I am thinking instead of having a fake nipple tattooed on , why don't I just have a pretty flower tattooed on...hey it probably won't look real anyway...so why not have something pretty with scar coverage?  Any thoughts?

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    Hi Emme,

    For your cracked lips, try tea tree oil chapstick (available at health food stores).  It heals anything!  I keep it on my bedside table so I don't forget to put it on before I sleep.  As for the tattoo.  I say do anything that makes you happy.  Just keep in mind that you will have to live with it forever.  A friend told me the story of an elderly lady who lived in the nursing home where my friend worked.  Apparently the resident had been a gorgeous, young stripper and tatooed a bunny on her butt.  My friend said that the bunny looked very sad and droopy on an 85 year old butt!  I say, whatever makes you happy!

  • caltex_catlady
    caltex_catlady Member Posts: 136
    edited June 2010

    Going in early this morning for extra blood tests related to the acetyl L-carnitine trial then get my first Taxol at 11am PT. I took dexamethasone at 11pm last night and 5am this morning. Not sure what I'll get there--benedryl, maybe? Let's hope it all goes well, with no SEs!

    Karen

  • marcy4
    marcy4 Member Posts: 162
    edited June 2010

    I was to have my second AC this morning and had an allergic reaction to the Doxorubicin so it had to be stopped.  I had started with FEC and had an allergic reaction to the Epirubicin on the second attempt.  So far I have had one FEC and one AC and now have to have my drugs changed again. Even with lots of premeds I reacted after only 1 mL with each of the drugs.  I was wondering if anyone was on a drug regimen that did not have Epribubicin or Doxorubicin.  I am HER2+, ER+ and PR+.  I hope to get a call tomorrow and see what they might want to try next.  I am to do  weekly Taxol next and am afraid I will react to it too. This really SUCKS!

  • DesignerMom
    DesignerMom Member Posts: 1,464
    edited June 2010

    Marcy4- So sorry to hear about your reactions to chemo.  That must be really nerve wracking!  There are so many different chemos and I certainly don't know which work in your situation.  Once I was ready to research specifics, I found the cancer math site very helpful.  Also chemocare.com gives very good detail on specific drugs and SE once you need answers. Here's hoping you breeze through your next go.

  • saralmom
    saralmom Member Posts: 329
    edited June 2010

    Well, I had my first weekly Taxol/Herceptin today.  It was a total marathon - I was not prepared for how long it would take.  I was there 5 hours!  One the weeks when I won't get Herceptin (get it every 3 weeks) it will be way shorter - Herceptin takes at least 1.5 hours.

    First MANY pre-meds - Aloxi, Benadryl, Zantac, and Dexamethasone.  the Benadryl knocked me right out - totally loopy.  I didn't react to either of the drug negatively.  However, I have had an increasing nauseous reaction to the saline flush over the last few weeks.  Well, today, I vomited everytime the nurse infused the saline.  (Before every new bag)  It was horrible - I had to sit with a vomit pan and eventually knew that everytime she was walking toward me to make a change I was going to get sick.  Had to nap for 2 hours when I got home, but then I ate and am feeling good now.

    Karen - hope you had a good treatment day. 

    Marcy - so sorry to hear about your reaction.  I hope they are able to find the right drug for you. I'm pretty clueless about what's out there other than AC-T or TC alone.  And for me adding herceptin.  Good luck on your next one.

    Sara 

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