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Taxotere, Carboplatin and Herceptin

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Comments

  • Wendyspet
    Wendyspet Member Posts: 103
    edited June 2011

    Lili2--I joined the club June 9.  I was so terrified to start, when the onc said they didn't have my TCH ready, I told them I was leaving.  But I stayed, and it really was alot of worry for nothing.  They started me with tylenol and benadryl, so I was zonked.  Then they do the TCH (but I have no idea what order cuz I didn't care)  She kept asking me how I felt, and nothing happened!  I had flu-like symptoms on Saturday, so I took an anti-nausea and went to bed.  Bone pain Sunday and Monday from the Nulasta shot, so I took Tylenol.  Otherwise, that was about it.  I feel very good and I am working.  If you start feeling yourself go downhill, get home and stay on top of your meds.  Wishing you the best!

  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    Welcome newbies! 

    wendyspet - you should ice during your Taxotere portion of your infusion.  Try to hold ice in your mouth and put bags of frozen peas on your fingers and toes so you can avoid the lifting and loss of your fingernails.  I received my pre-meds and then T, then C, then H in order.  I had the most bone pain from Neulasta on the first shot but I did take Claritin an hour before the injection and then followed every 24 hours for a few days.  I missed taking it before shot #3 and I did have n=more bone pain on that one, so I didn't do that again.

    dragonfly - my tears are intermittent - they just crop up suddenly but I also have the eye twitch - sometimes both eyes but not synchronus - really annoying, makes me feel crazy!  None of my clothes fit either and the swelling shows no signs of abating.  I have also learned that I can't try clothes on after noon - I swell that much from the time I get up in the morning.  Hate it!

    Good luck to all!

  • Wendyspet
    Wendyspet Member Posts: 103
    edited June 2011

    I did take the claritin for 3 days, but it was still bothersome, so switched to the Tylenol.  Good news is onc said if my counts are good, he won't make take the neulasta again.  But I'm not opposed to it if it is going to make me feel better overall (kind of a double-edged sword, isn't it?).  Did you loose your nails?  I am having some mouth issues now, but will admit that I haven't been very good about the miracle mouthwash.  Next time I will chew the ice chips for sure.  Thanks.

  • dragonfly1
    dragonfly1 Member Posts: 516
    edited June 2011
    Wendyspet The nail issues seem to vary by individual. I never had a problem with my toenails but my fingernails started to get discolored and really sore by the third TCH. They hurt so bad that I could not stand to close buttons or turn lids on jars, etc. I used frozen peas in ziploc bags on my fingernails during the Tax infusion and they never got any worse. Now that I'm done with TCH they have "lifted" slightly on the ends of several nails and I'm keeping them clipped really short so I don't catch them on anything but they don't look bad and look like they'll be absolutely fine as they grow out. I highly recommend icing. The nurses and my MO told me it doesn't work (which I found very annoying but that's another story) but I can certainly say that it seemed to make a difference.
  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    wendyspet - I lost a pinky toenail and my wedding ring fingernail is definitely funky.  I had to remove acrylic nails before chemo and that nail had a tear high up and I think that is why is was affected.  It is lifted all the way up to the quick except about 1/8 of an inch from the top in a triangle shape.  The rest of my nails are absolutely perfect, no ridges, lines or any other problems other than dryness of the skin around the nail and sensitivity of the fingertips.  Receiving Neulasta only boosts your white blood cell count - you won't feel any better by receiving it but the higher your WBC count the better you fight off infection.  Neulasta does not affect your red cell count or hemoglobin which are the two that are connected to anemia and fatigue.

  • Lili2
    Lili2 Member Posts: 11
    edited June 2011

    Ah - I just read all of your shout outs, and they made me feel so much better! I knew I was not alone, but it's nice to have found a community where everyone understands. 

    I just sat down and made a nice schedule with all my meds, when and how to take them before and after chemo. This makes me feel like I'm somewhat in controlUndecided

    Thanks for the advice re: drinking fluids! Will do!! My onco is really on the forefront with chemo and nutrition, so I'm advised to take 10 g of Glutamine 3 times/day during my chemo week. After doing some research it seems this might really help with some of the SE's. She's also all about supplements and eating right, so the things I'm already taking (like fishoil, flaxseed, vitamins) is a go - yay!

    I actually met with my onco yesterday, and she said something that reallly resonated with me, she said: "I understand how you feel, and I'm very sorry you have to go through this. I know it's not easy, but you have to know that right now, at this point in time, these are the best medicines we have, and they work really well. When I started as a 20-something (she is probably in her 60's), most of my patients died. Now, most of them live, which is an incredible leap and an amazing experience. The patients that do the best with their treatment are those who can surrender in some capacity, and accept and welcome the treatment as a way to healing and getting well."

    I will envision the chemo as a VERY nice and expensive bottle of Italian Brunello being injected...that should do the trick Wink

    Sorry for the long post, but wanted to share this with all of you. Together with all of your sweet and caring comments, what she said helped me get into a different mindset. I now feel ready to take this summer on - full steam ahead!

     Talk soon...

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited June 2011

    Lili2 - you will do great!  Really!  There are hard times, but with a positive attitude you will do fine.  As an FYI - I just bought the glutamine for some toe neuropathy.  I wish I had used this earlier...live and learn!  You are smart to take this now.  Enjoy the Brunello. Ciao!

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited June 2011

    Hi everyone,

    All of your posts are so helpful.  Especially the claritin to help with bone pain-I still wonder why it works to decrease bone pain as it is for allergies?  But no down side to talking it so will continue for a few days after infusion and neulasta.  Does anyone have problems with running, dripping eyes?  My eyes are constantly running.  The eyelid swelled up last week and I even went to opthomologist cause I thought I had either something in the eye or it was getting infected.  He could find nothing wrong to cause that.  My onc says taxotere may be causing "dry eyes" which cuase them to water.  What are people using to combat this symptom?  I am using drops but not all that helpful. 

  • omaz
    omaz Member Posts: 4,218
    edited June 2011
    serenity - I also got a cool washcloth and placed it over my eyes for a few minutes and that seemed to help.  I was told the same thing about dry eye from the taxotere and told to use natural tears often.  I found that it didn't help too much, maybe a bit.  I also had the eye twitching.
  • dragonfly1
    dragonfly1 Member Posts: 516
    edited June 2011
    Serenity I took the advice of Sewingnut, Lago and others and managed to get an appt with the eye doctor today re: the "taxotears" Mine are really bad at this point after the 6th TCH and are running all the time. I was really worried about the risk of the tear ducts being scarred/permanently damaged as other people have described. The eye doctor checked the tear ducts and said they are clear at this point but that he will check them again in 2 weeks. He said that even though the problem comes from dry eyes (caused by Tax) that eye drops won't really help. He recommended warm compresses 2x/day. He said there is definitely a risk of damage to the tear ducts but he reassured me that "taxotears" are usually transient and should clear up naturally. For those who have chronic "taxotears" please have your eye doctor check your eyes...  
  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    Hey ladies I am getting worried I am 4 weeks PFC and I still am having muscle soreness in my thighs and calves. It is constant but the intensity cones in waves. Each block I walk I have to stop because the muscles burn. I have been to a neurologist and he ruled our neuropathy and he thinks it's myalgia ( duh ) due to chemo. Any idea how long this can last. I also am

    More fatigued than I ever was during TX. Thank you.

  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    nmoss - what does your CBC say?

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    Hey SK, last one was on the 13th 3 weeks PFC.WBC 5.0 - RBC 3.66 - HGB 11.8 - HCT  36.8 - MCV 100.5 - MCH 32.2 - MCHC 32.1 RDW 15.4 PLATELET 185 . My Platelets are half of the previous test on the 6th.

  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    nmoss - actually your numbers are awesome.  Your platelets are OK - nothing to worry about.   Platelets are kind of mercurial - they can be up one day, down the next and have some wild swings, but yours are in the normal range.  I had a CBC today, my WBC is threatening to go low for the first time in the whole shooting match.  My RBC is 2.8, hemoglobin is 9.  I was curious if your counts would correspond to the muscle fatigue, but they really don't.  Your hemoglobin (carries oxygen to the muscles) is normal.  My assumption is that it is still Taxotere toxicity.  Bummer.

  • nmoss1000
    nmoss1000 Member Posts: 324
    edited June 2011

    Thanks SK! Go eat steak and leafy greens I swear by it. I was afraid of the tax lingerIng. It's scary what this stuff does to us! I really hope you don't need Nuelasta !

  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    nmoss -I have eaten a fair amont of red meat between the last CBC and today - to no avail.  Hgb stayed the same and RBC dropped.  It is just the cumulative effect of 6 lethal injections. I am still pretty tired. I have had Neulasta after every tx, I really didn't have much of a problem with it.  I go for Herceptin next Thursday and will have a CBC then - if the WBC is low they will probably Neulasta me then.

  • serenitywisdom
    serenitywisdom Member Posts: 109
    edited June 2011

    Thanks to all of you for helpful information on taxotere and tear ducts.  I saw my opthomoloigst last week since I thought maybe I had an infection.  He mentioned warm compresses but I don't think he knew about the impact of taxotere on tear ducts.  I hope this is transient.  Just had my 5th treatment today. .  I continue to worry about the weight gain-almost 30 pounds since Feb after  my mastectomy and thyroidectomy and chemo which started in March.   The docs say it is due to chemo, steroids and my thryoid which has been generally too low.  The weight gain is primarily in my abdominal and rib cage (wierd) .  For those of you who have finished the chemo, is this transient or will I have to wait until I finish the year of herceptin?  I have not changed my eating habits to warrant this weight gain.  Help!! 

  • dragonfly1
    dragonfly1 Member Posts: 516
    edited June 2011
    Serenity The weight gain is something that has been a problem or many of us on TCH. I wasn't even able to eat for 2 of each 3 week cycle because of terrible GI problems from Taxotere and I'm still up 12 pounds. I'm almost 3 weeks past TCH #6 and still seeing an extra 12 pounds on the scales. My abdomen and thighs are definitely where the weight seems to be carried. I've been so frustrated by this but I've been told by many women who are ahead of us that it's not true weight gain and most of it will begin to drop off about 6 weeks after finishing. Of course, I'm realistic and don't expect to lose all of it because I know I'm also in "chemopause" now and I wasn't able to exercise during chemo but there is no way I could have gained 12 pounds in that period of time. It sounds the same for you, so hang in there...I'll keep you posted and let you know if my pounds drop off a month from now!
  • Nicolgirl
    Nicolgirl Member Posts: 7
    edited June 2011

    I start my first round of tch on Tuesday. I've been scared too, but once I started reading all the advice found here, I've drawn strength from each of you. Thank you for taking the time and having the love to share here. I'm also in another forum about fasting before chemo. I listened to a radio show by dr.Katherine Albrect (she has stage 3 bc) where she interviewed a dr.Longo, he's doing a study at USC on the effects of fasting and chemo. But after reading all of the experiences here, it gives me hope that it won't be so horrible. Im not devastated about losing my hair, I'm scared about things like neuropthy and chemo brain, heart damage, crazy tears and sex drive!



    I'm blown away that you gals have worked while going through this. Y'all are true warriors! The words invincible warriors are appropriate. Please keep the advice flowing!

  • Nicolgirl
    Nicolgirl Member Posts: 7
    edited June 2011

    I start my first round of tch on Tuesday. I've been scared too, but once I started reading all the advice found here, I've drawn strength from each of you. Thank you for taking the time and having the love to share here. I'm also in another forum about fasting before chemo. I listened to a radio show by dr.Katherine Albrect (she has stage 3 bc) where she interviewed a dr.Longo, he's doing a study at USC on the effects of fasting and chemo. But after reading all of the experiences here, it gives me hope that it won't be so horrible. Im not devastated about losing my hair, I'm scared about things like neuropthy and chemo brain, heart damage, crazy tears and sex drive!



    I'm blown away that you gals have worked while going through this. Y'all are true warriors! The words invincible warriors are appropriate. Please keep the advice flowing!

  • Nicolgirl
    Nicolgirl Member Posts: 7
    edited June 2011

    So, Acetylcholine-L-Carnitine for neuropathy, and what for mouth sores? Lysine, or Biotine mouthwash? Do you take frozen peas to tx with you? I might giggle if I carry bags of peas in there.

  • omaz
    omaz Member Posts: 4,218
    edited June 2011
    Nicolgirl - I got insulated lunch sacks from Target and put the peas in there.  I also use L-Glutamine for neuropathy.  It was recommended by the onc nutritionist.  I used the biotine spray for the mouth issues.  Good luck, drink drink drink and eat lots of protein.
  • dragonfly1
    dragonfly1 Member Posts: 516
    edited June 2011
    Nicolgirl I used Biotine mouthwash throughout chemo but when the mouthsores got really bad during my first cycle the MO gave me a prescription for some prescription dissolvable tablets to use 2x/day and I never had a bad problem again. I carried a couple of quart size ziploc bags of frozen peas in an insulated lunch bag so that I could pull them out when it was time for the Tax infusion.
  • bluedasher
    bluedasher Member Posts: 350
    edited June 2011

    I finished TCH in February 2 years ago so I'm just popping in to say hi and let those just starting know that there is a light at the end of the tunnel though that may be hard to remember on the down days. For the first few weeks after chemo, my muscles, especially leg muscles felt pretty weak but then they started to feel better. I was surprised by how quickly I recovered strength and got back to normal after that.

    For those with low red blood cells - during chemo it is because chemo attacks fast multiplying cells which includes blood cells. Getting more iron from red meat or whatever isn't likely to help because your body just can't make them. If they get too low, you will probably get a blood transfusion. I needed that before my 4th chemo and at the end (either before or after the 6th cycle). After chemo was over while I was still on Herceptin, my RBC came up enough so that I felt normal but it took a long time to actually get back into the normal range. 

    My platelet level bounced around on chemo too. A couple of times it was low enough on the blood test I took a couple of days before chemo that my oncologist suggested postponing chemo, but she retested and they had come up enough that she let me go ahead and stay on schedule.

    I also had trouble with creatnine level (which measures kidney function). It was coming back to normal, but then I went on a drug trial - the bisphosphonate one. The drug I was on, Clodronate, doesn't have kidney function listed as a side effect, but my creatinine went up when I was on it, down when I took a break and then back up so I got off the trial after several months. The potential benefit of the trial wasn't worth the risk of kidney damage. The creatinine level got closer to normal after I got off the drug, but settled at a level slightly above normal for most of the last two years.

    I just had a blood test and my creatinine level is back to normal so the last side effect of the chemo and the drug trial is finally gone from my blood tests! 

    The whole cancer and chemo experience is starting to feel a bit unreal.

  • Lili2
    Lili2 Member Posts: 11
    edited June 2011

    Hi all...

    Quick questions - in asking my onc a million questions before my first injection, I forgot the simplest ones...can I eat breakfast in the morning (I'm going in at 9.45 am, and will be there until the afternoon)? They didn't say I couldn't eat, but what are your experiences? What about coffee?

    And, what do I wear? I have a power port just beneath my left shoulder... I've seen the patients in the chemo room, they are not wearing hospital gowns. Do I have to wear something that buttons in the front for easy access, or do they just push whatever you have on to the side? I know this is a silly question - but I want to be as comfy as possible, and if I can skip the hospital gown (because I put something on that just doesn't work) I would feel much better... Wink How about bra straps - after the double mastectomy I have to wear a sports bra at all times right now, and the straps go right over the port...

    Again, thank you for all of your posts - I'm drawing on your strength, and I feel reassured in knowing that after tomorrow, this will all be less of an unknown, and I'll only have 5 more to go!!!

    xoxo

  • pasmithx2
    pasmithx2 Member Posts: 224
    edited June 2011

    Lili2--You can eat. You might want to bring snacks and go easy the first day until you see how you feel. I never react and like to have a decent beakfast before chemo. It's a long day. I will also have my coffee on chemo day, but I try to get additional water to compensate. You can eat what you like so long as you feel like it.



    Wear comfy clothes. If you have a port-o-cath, they access it with a long-ish tube. All you need to be able to do is expose the port so they can access it. You can rebutton or pull your shirt back into place and let the tube just hang out. I've seen guys with turtlenecks and they will have their ports hooked up to the line from the bottom of their shirt. It doesn't really matter. I prefer to dress in layers--t-shirt, sweater. The chemo room is often warm, but last time it was cool. I also like comfy pants since I have to sit in the darned chair for so long. Not sure about the bra straps if they're sitting right on the port. If they aren't tight and will sit to the side once the port is accessed, it might be ok.



    For me, it's always a long day. I have to start with blood work and then wait to see the onc. It doesn't seem too matter if my start time is 8am or 9.30am. The first day will definitely be long because they will likely run your drugs at the slowest rate to see how you react. They'll speed them up next time if you don't react.



    The first day is stressful because it's all new. Bring your preferred snacks; some people bring little coolers. Bring a toy bag with a selection of things to do. I always have the iPad, books, etc. I never know what I'll feel like doing. If you have someone going with you, they might want a book too. It gets hard to talk non-stop all day (although my sis-in-law and I did a good job!) After that first day, you'll have a good idea of what will work for you. Ask questions of the chemo nurses. They know a lot.



    Good luck. Let us know how it went.

  • Nicolgirl
    Nicolgirl Member Posts: 7
    edited June 2011

    Lil2, thanks for asking the simple questions! I guess it's you and me this week. I start tomorrow, so let me know how it goes today. I'll be thinking of you all day. Always remember that you can do hard things! Good luck!

  • specialk
    specialk Member Posts: 9,262
    edited June 2011

    Lili2 and Nicolgirl - remember to ice your fingers and toes during the Taxotere portion of your tx, even if that means bringing frozen peas from home in a cooler.  If you are receiving Neulasta next day take the Claritin an hour before, and for several days afterward, check with your onc to get an OK.  Don't pre-medicate for constipation until you find out if you will have that SE - I never did, had quite the opposite!  I brought snacks, books, but found that I liked magazines because my attention wandered too much for a book.  I drank a lot of water during my tx - they had a big water cooler thing with self dispense cups.  I always wore something that buttoned or zipped up the front - usually  something soft and non-binding, like yoga pants and a lightweight hoodie, it is always cold in my center so layers were good.

    Also if you are nervous they may be able to give you Ativan as a pre-med in your tx - it is anti-nausea and anti-anxiety.  It was on my list of authorized pre-meds but I had to ask for it if I wanted it.  It will make you very sleepy so you can't drive yourself, but you shouldn't drive yourself for the first one anyway.  I only had it on my most recent tx because the dog had escaped and had not been found by the time I had to go - my DH was running around trying to find him.  It all worked out but I was a nervous wreck!

  • AmyIsStrong
    AmyIsStrong Member Posts: 426
    edited June 2011

    I echo Special K's hints above.  I wore a button or zip down shirt or sometimes a tank top with a zip hoodie over it. That way I could unzip and just move the tank top straps to the side to access the port. Be SURE to ask for EMLA cream ahead of time. It numbs the area so you do NOT feel the 'stick' when they access the port. 

    The morning of the treatment do the following:  90-120 min ahead of time (IMPORTANT!!!) take a 2" or so square of plastic wrap. Lay it on the counter.  Put a glob (that is a medical term) of the EMLA cream on the plastic wrap.  Lift up the plastic wrap and press it against the port.  The cream will cover the port area, the wrap will cover it so it does not get on your clothes, and you won't get any of it on your fingers. I had many times to perfect this technique - trust me, it works the best.  The label on the cream says 60 min ahead, but I have found that longer makes it more numb and you have a better outcome.

    Also, I wore stretchy pants with a non binding waist. You are sitting a long time and that is most comfortable. My chemo room gave me a fleece blanket for me to keep and bring each time, but if yours doesn't, you might want to bring a small fleece throw. It does get a little cool in those rooms and the benadryl always made me sleepy, and it was nice to cuddle into the blanket and snooze the hours away.

    Also bring an IPOD if you have one.  My chemo room was not particularly private and sometimes I could hear other people talking or, if they didn't have a port, sometimes crying as they were stuck repeatedly trying to access a vein. (Made me glad to have my port)  It was nice to be able to put on music or a podcast and 'tune out' the surrounding noises.  I saw women knitting, some brought a laptop to do work, or read books. I usually had a book but mostly slept once the benadryl kicked in.
    Bring a large water bottle - that way you can refill it less times and drink more water.

    I didn't like getting up/walking around with the IV pole. Didn't hurt in any way, just creeped me out. So I liked having a large bottle I could drink from without having to get up to refill it too often. I also took a chair fairly close to the bathroom, knowing I would have to go there several times.

    Everybody is extremely nice and helpful, and (unfortunately) it becomes a routine after the first time or two. By the time you get to the herceptin-only part, you just zip in and out and it's not a big deal at all.

    Good luck ladies. I KNOW it seems like TCH will take forever, but it really does go fast.

    Amy

  • Pollyagain
    Pollyagain Member Posts: 14
    edited June 2011

    I had my 6th and last treatment of TCH on June 2.  This Thursday I get Herceptin only.  I know everyone isn't the same, but for me, chemo was just not nearly as bad as I anticipated.  I had few side effects, a little nausea that came and went and a few mouth sores two of the 6 times.  The pre meds that they gave me before chemo each time, Aloxi and Emmend, took care of almost everything.  I asked my oncologist what he thought about icing fingers and toes one time.  He said he didn't really know.  He felt like few women get that side effect and if you iced and didn't get it you would think it was due to that, and maybe you wouldn't have it anyway.  Then added that if he thought something might help and wasn't going to hurt that he would do it.  The next time I went for treatment, they said that it ws in the doctor's orders that I was to get bags of ice for fingers and toes if I wanted it.  I had it every time after that, but never wanted it for my toes.  So far no sign of that SE.  Every chemo pod at Barnes has a well stocked cupboard of snacks, chips, crackers, pretzels, cookies, cold sodas and juice.  It's all free for patients and guests.  You're also welcome to bring in lunch or whatever you want.  they only ask that you not bring in anything with a strong smell that might offend other patients.   They also offer you a warm blanket, since the chemo room is quite cool, but I never needed it.  I'm always hot.  Anyway, it was a good experience.  The time wen't quickly.  You can do this, and you will be surprised one day when suddenly you're on the last one.   I had my surgery in December and will soon be starting radiation.

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