Starting Chemo October 2014

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  • Becca9800
    Becca9800 Member Posts: 79
    edited October 2014

    Update: I woke up yesterday (day 6 since treatment) feeling pretty normal. Showered, dressed and drove 25 minutes to work, sat at my desk and was so nauseated. It was like the more I moved around, the more nauseous I became. Well I can't take both Compazine and Ativan and keep my head from slamming down to sleep it off, so I took just the Compazine. The nausea grew more intense and by 8:55 AM I knew I wasn't going to make it. I said my good-byes (I work for a wonderful healthcare company and have a truly understanding boss) and started my drive back home, fighting the urge to hurl all the while just wishing I would. Thankfully my little daughter had previously 'lifted' several plastic bags found in the Produce department of our local grocery store for I had to pull over and eject into one of them. Thankfully my new SUV's interior was preserved. Now I have a supply of Zofran in my very own stocked kitchen pharmacy. And sisters, it works wonderfully. Going to work today, need some distraction, need to feel useful! Need to spare my limited paid sick days! Here's to a better day for ALL of us! 

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited October 2014

    about mouth sores, a friend of mine who has been through this recommended starting the mouth rinsing as soon as you get home from infusion.  She said that first round she did not and ended up,with terrible sores.  Second round she started  rinsing her mouth with warm water w salt and baking soda that very day and no more sores.  My doc also told me that once the vomiting starts, it's very hard to stop, so the key is prevention.  Counting down to my first infusion on Friday,

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Becca - glad you are starting to feel better and trying to go to work today.  I hope it will be a successful day for you.

    Yesterday was my first day back to work and I felt okay.  I didn't have to take any nausea meds but I was just extremely tired.

    Hoping everyone is having a good day.

  • Becca9800
    Becca9800 Member Posts: 79
    edited October 2014

    Haha oh boy! What's that they say about the best laid plans of mice & men..... Instead of going to work, I ended up getting a bag of fluids, kytril and steroids. Went for a routine post-chemo NP visit and apparently I had allowed myself to become dehydrated. Didn't mean to and didn't recognize it (geeze, I'm a registered nurse, WTH!). I really am feeling much better now. Would love to go shopping but my school-days rule still has a hold on me..... no school = no play. Guess I'll shop another day. 

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Becca - so sorry you had to go through all of that today, but I hope it makes you feel better.  Shop til you drop another day when you are feeling more yourself!

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited October 2014

    Hi ladies.  I had my port surgery yesterday.  I now want to rip my chest open.  Between the expanders and pain from the port I don't know which end is up.  I also have horrible nausea. No fever.  Is this normal? It's ibeginning to be a struggle to keep my spirits up.  

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Ilovecoasters - So sorry you are so miserable, but it DOES get better.  I am two weeks out and am pretty comfortable now.  I can sleep on my side or my port side and neither are uncomfortable.  You might want to try 20 minutes of ice at a time on either the port site or the neck site or both.  It did help me.  Also, keep up with ibuprofen or pain meds to help you out.

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited October 2014

    Thanks Mandy. I am icing now and it is helping.  I miss sleeping on my side and belly so much! It's impossible with the expanders   

    Michelle

  • Smurfette81
    Smurfette81 Member Posts: 3
    edited October 2014

    Msgirl4, Hi I too had Adriamycin, and Cytoxin every 2 weeks 2 years ago.  I was premedicated with Zofran IV, Zantac PO and Decadron IV to combat nausea and vomiting.  The next day I got a Neulasta shot to keep the blood counts up.  2 days later I would feel body aches, fatigue and nausea.  By the third treatment my hands and feet had blistered so they decided not to do the fourth treatment.  Cetaphil cream on my hands and feet helped and I kept them covered at night.  I had to wait 4 weeks for the skin to heal then they started the next treatments of Paclitaxil and Herceptin.  Herceptin was weekly for 12 weeks then every 3 weeks for a year total, and Paclitaxil was every 3 weeks for 12 weeks.  Fortunately they said I did not need the Neulasta as my counts were good, I thought the body aches would be gone for good, unfortunately I was wrong!  Two days later my bones ached so bad I could not sleep!  Tyl # 3 helped some, but resorted to Ambien for some much needed rest.   Yes I continued to work full time.  I am a nurse in the OR and fortunately my co-workers took some of my call during treatments so I didn't get called in the middle of the night.  I had treatments on Wednesdays and I started to feel bad on Fridays, which was tough to work at times, but knowing I had the weekends to rest helped.  By the third Paclitaxil treatment I had some tingling in my feet.  That slowly went away when the Paclitaxil was done.  Herceptin itself was no problem, just fatigue.  As of now I am 2 years post diagnosis and currently in between hormonal treatments.  Started with Arimidex, then changed to Aromasin, due to side effects.  Now waiting to start Tamoxifen once the side effects of Aromasin wear off.  Going for mammo next week!


  • nottoday
    nottoday Member Posts: 162
    edited October 2014

    Ladies,

    I have my first neulasta injection early tomorrow afternoon. I was instructed to take Claritin 24 in the morning. Knowing how many great tips are on this web site, I was early to see how others have handled neulasta. Could anyone explain the claritin/advil/pepcid cocktail to me, including dose and how soon before and how longer after the neulasta injection you recommend taking it?

    Thank you, and best wishes to all of you through the chemo journey.

  • speedcat88
    speedcat88 Member Posts: 37
    edited October 2014

    Hey Ya'll,

    2 down 4 to go!  2nd round over and went just as smoothly as the first.  No nausea, thank god.  I'm so sorry Becca.):  Why didn't they give you Zofran to begin with?  I have 3 refills on mine, but I've only used 2 and I didn't feel the type of nausea you are feeling, just a little unsettled.  Yes, Zofran can be your best friend.  Left the chemo center and bought another wig with my BFF's help then had a cheeseburger.  Now home cooking chili and getting ready to do a load of laundry.  Can't forget American Horror Story on tonite.  Those of you who watch it...don't you think it's a little "freaky"  this season?  I just hate that Jessica Lange won't be back next season.  

    Got a new prescription for Magic Mouthwash.  This one is a bit more expensive, I think there's probably a little antibiotic in this concoction.  I'm prone to mouth sores anyway, started chemo with one that was healing slowly.  I have a lot of bone overgrowth ( I forget what they call that) and it stretches the gum tissue so thin that anything can cause a sore (cut, tear, tec.)  Yeah, I do the ice during the IV push.  Makes it hard to eat and drink, what I like anyway.  Oh, the chili is ready.  See!  I'm not really hungry though.  

    nottoday I have my 2nd neulasta shot tomorrow afternoon.  I have taken the Claritin, well a generic, everyday because of my drippy nose, but my MO said at least 7 days.  I started taking it about 2 days before I got my first Neulasta shot.  All I felt were some "twinges" here and there, a little lower back pain, and pressure directly on the breast bone.  I did question whether I might be having a heart attack since that is a sign in us women.  My MO said that's the neulasta.  It's the main ingredient in the Claritin that's helping.  It's blocking the histamines that are being produced.  For the twinges I only needed some Tylenol.  Still have the heavy duty pain meds on standby though.  The Claritin doesn't work for everybody, but I hope it works for you.   My counts have been great, you wouldn't know I was having chemo if it wasn't for my bald head.  My MO even said I could go to the race in Martinsville this weekend.  That would be Sunday.  Hope I'm up to it.  Even if not I'd rather feel like crap at the track where I can use my scanner than at home.  We do have a comfortable RV. 

    Well, the sponges stayed frozen and were a lot less messy than just straight ice.  The verdict is still out on whether or not they worked as well as just the ice.  The fingertips on my right hand are tingling a little.  My fellow patients had a great time watching me because no one else is doing this.  One of the ladies did tell me that6 she wished someone had told her about this because her fingernails and toenails turned as black as her skin.  Another said put it on Shark Tank.  mulligan was it you that suggested sponges?  

    I noticed that most of ya'll have ports.  I don't and I thought to ask how that determination was made.  My nurse told me that it depended on several things:  the doctor, your veins, the type of drug being used, and personal preference.  Well, I have great veins.  I'm just guessing that the adriamycin is the another reason I don't have a port since it can cause heart damage.  I only have 4 rounds to go now so hopefully the veins will hold up.  My nurses are really great at getting it in there without blowing the vein.  

    Well, I think I've rambled on enough here and I think I'm getting hungry (sorry guys).  Will check back later and Love Ya'll.

             

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited October 2014

    Ilovecoasters, My port has bothered me since the second treatment.  I move just right and the pain shoots down my arm and out my fingertips.  It definitely stops me in my tracks.  I took Zofran every 6 hours and/or before I ate a heavy meal.  I even made sure I got up in the middle of the night and ate some crackers and took another Zofran at that time.  It certainly became my best friend for about a week.  Keep positive, you can do this!!!!

    Nottoday, I start Claritin and Aleve the day before treatment and continue for a week afterward.  I didn't have any bone pain the first two treatments, but the third I gave up and called and got they better stuff.  I think a lot of the problem was the weather was changing her in Missouri and it was rainy and cold. 

    Speedcat, I'm jealous and at the same time sorry about Jr. missing the cut.  I can't say I am sorry about JJ missing the cut.  I have been to Bristol and Dover, so Richmond and Martinsville are next on my list.  Maybe next year!!!  Have you ever been to my home track, Kansas Speedway?  My surgeon put in my port when I had my BMX.  She said it would be easier on my veins.  Now that I know another surgery is coming, she will take out the port at that time. 

  • speedcat88
    speedcat88 Member Posts: 37
    edited October 2014

    image

    Nomatterwhat, I knew I liked you for a reason.  I'm absolutely thrilled that JJ didn't make it!  I'm not too happy that BK made it.  I'm looking at Jr to win this weekend.  He's gone back to National Guard on the car.  Call me superstitious, but all 3 races that were a disaster for him had Diet Mountain Dew on the car.  I haven't been to Kansas or Bristol yet.  I here they are going to charge a hotel tax for camping next year.  They're all on my bucket list.  We do both Martinsville races, Darlington (great that it's gone back to Labor Day), both Charlotte races, and the spring Richmond race now.  Used to do the Rockingham races and went to the recent truck races there.  It was a wonderful place to see the race and camp. 

    Here's a pic of Jr headed for the Helipad. The route is right by our campsite.

    Here's our camper at Martinsville.  We fly an ECU flag and a new JR flag now.  

    image

    Well, time to hit the bed so I can get up for work tomorrow.

    Night Ya'll

  • Nomatterwhat
    Nomatterwhat Member Posts: 587
    edited October 2014

    Speedcat88, My heart still lies with Carl, but I don't think he will make it to the finals.  I agree Jr. needs to go back to National Guard, better looking car.  Nice picture of Jr., he is like a fine wine!!!!!  Nice camper, maybe after we retire we can have one and travel more, but right now my husband likes to fly.  Have a great day at work, and think of me, as I will be having my LAST chemo treatment.  YAY for me!!!!! 

  • Becca9800
    Becca9800 Member Posts: 79
    edited October 2014

    nottoday -  "Could anyone explain the claritin/advil/pepcid cocktail to me, including dose and how soon before and how longer after the neulasta injection you recommend taking it?" 

    I've seen different regimens with these meds so it's really important to discuss with your MO what their preferred regimen is for you. I've seen recommendations to start the cocktail the day before and continuing through days 3, 5 and 7 post-chemo infusuion. I've seen advil substituted with aleve, and I've seen pepcid omitted completely. 

    The claritin reportedly works to inhibit histimine release during the revving up phase of your bone marrow's stimulated WBC production. The advil/aleve reportedly works to diminish suspected inflammation within your bone's core during the same phase. I found nothing solid how the pepcid works so am just guessing that all these drugs - the chemo, steroids, advil/aleve - are all hard on your stomach and the pepcid is a prophylactic to prevent more problems. 

    I used the claritin/advil/pepcid (all generics cuz the brand names would have bankrupted me) regimen beginning 24 hours before Neulasta and continuing x 1 week after. I still had enough pain that a heating pad and Norco was needed intermittently. Wouldn't want to know how it would be without the cocktail. 

  • Becca9800
    Becca9800 Member Posts: 79
    edited October 2014

    Speedcat - "I'm so sorry Becca.): Why didn't they give you Zofran to begin with?" They pre-loaded me with Aloxi on Wednesday and I never felt even a twinge of nausea until the following Sunday evening. I guess they start with the small guns and work their way up as needed. I was sent home with compazine and it worked pretty well until Monday. I started Zofran Tuesday morning (a week out from chemo) and it just didn't work, I was too dehydrated by then. Only myself to blame. Now I know better and this will not happen to me again. 

    Speedcat- "I noticed that most of ya'll have ports. I don't and I thought to ask how that determination was made." Bottom line, IMHO, it's a physician practice preference. My first consultant did not recommend a port in my case, the second consultant felt adamantly that a port was necessary for me. These two are both certified MOs, practice in the same city and even at the same hospital and recommended the same basic treatment regimen for me. It can only be personal preference. 

  • nottoday
    nottoday Member Posts: 162
    edited October 2014

    Becca,

    Thanks so much for the great information and getting back to me so quickly. I'm not just 4 hours away from the injection - not 24 - but I will take the cocktail now and continue for several days! I'll start earlier next time.

    Hope all goes smoothly for you.

    Best wishes to the ladies on this thread.

  • ml143333
    ml143333 Member Posts: 658
    edited October 2014

    Nottoday - I had my Neulasta shot this past Saturday.  I started taking Claritin and Aleve on Thursday.  Once I received the shot, I added Pepcid (just because I had heartburn really bad).  I am still taking the Claritin and Pepcid just in case I need another shot this week after my bloodwork.

    I didn't have any bone pain at all.  I did feel like I had the flu on Monday which the nurse said was probably from the shot.

    Hope all goes well!

  • speedcat88
    speedcat88 Member Posts: 37
    edited October 2014

    Congrats nomatterwhat!  Way to show this nasty cancer who's the boss.  I like Carl, too and ya just don't know.  Got a great pic of him in the garage at Darlington on crutches.  

    Good luck nottoday.  It will go fine.  Keep the pain meds handy. 

    Becca, my MO put me on prilosec right to start with, daily.  I think, too, it depends on what has been proven to work most consistently with whichever practice, treatment group, center and their patients.  maybe that's why I'm not having the stomach issues (knock on wood).  Things can really change from one round to the next.

    Up at 6:20 and to work by 8:10.  Computers up and running, bring it on.  Get the 2nd neulasta shot this afternoon.  Hope the Claritin and Tylenol do it.  Still haven't had any nausea, but the trusty Zofran is with me.  Had the strangest sensation last night as I had to get up around 2:15 to hit the bathroom...it felt like gravity had increased and was trying to make my legs bog down.  Weird, nothing like that the next time.  I did have some trouble sleeping and I'm somewhat gung-ho this morning.  I think it's the steroids working on me.  Last round I took one of the other nausea meds i have because I knew it would make me sleepy.  Didn't do that last night.  Think I will tonite.  Have some tingling in my fingertips, but nothing with my toes.  I had the right sponges for the toes.  They hed onto the ice for a very long time.  Different sponges for the hands.  Need 2 more tack sponges. 

    Have a good day everyone.   

  • speedcat88
    speedcat88 Member Posts: 37
    edited October 2014

    Oh I forgot. 

    GO PIRATES!  ARRRRRRRRGH!

  • BookLady1
    BookLady1 Member Posts: 253
    edited October 2014

    thanks everyone for good SE management advice. I finished Round 2 and Neurlasta yesterday and am hyped on the steroids, for sure! So far, midday, pretty good. I got my head shaved and wig cut and styled yesterday as my hair was coming out in clumps when I woke up. I had terrible pain from my scalp the night before. Figure it was telling me the chemo had reached the roots and in the morning my head felt fine. I like the wig more than I imagined and tried out bald and hats and caps today. Maybe a little extreme for a solution, but being bald has been the only remedy to have helped these hot flashes fro hell of mine!

    QUESTION - how do I care for my newly bald head? Regular shampoo, or any lotions or potions y'all reccomend for the poor thing? Thanks and have a good rest of the day.

  • kerensa75
    kerensa75 Member Posts: 83
    edited October 2014

    I would say a mild shampoo for your head or a face wash. Put your face moisturizer on your head when you do your face :)

  • HollyD
    HollyD Member Posts: 49
    edited October 2014

    day 2 of infusion went well, I don't have a port so they have been going on on the back of my left hand, same set of veins, missed the first vein and it's so sore and bruised. I told the nurse I needed norco for the back pain from the neulasta, I did the ibuprofen/Tylenol even tried Valium and tramadol left from surgery and neither worked as good. That was taken with the Claritin 24. I suppose it could have been much worse without! Hopefully the norco will aleviate the fatigue from the back pain that added to just the chemo fatigue! I started Pilates last week in hopes to keep some strength and tone through this. Also on Probiotics to keep things flowing :) cold caps working so far so good. Drinking water like a mad woman. Not looking forward to chemo brain and everything smelling bad! 

  • Fabian59
    Fabian59 Member Posts: 23
    edited October 2014

    Well thought I would update on my progress.  Just had second infusion yesterday, took 5 hrs. because there was so many patients getting chemo.  It is a wakeup call and now traffic does not bother me.  I used the cold caps both times and lost some hair so far.  I put it on 1 hr. before and left it on 4 hours after finished the treatments.  I am being treated with Taxol and Cytoxin as well as all the anti-nausea drugs and steroids.  I have to say that I am really not having a hard time at all.  Praise the Lord.  I have not been nauseated at all and only after taking the Neulasta shot is the worst I have felt.  Have not missed any work at all and have not had any reactions at all through both chemo sessions.  I go for my second Neulasta shot tomorrow and will continue to take the Claritin for 5 days post chemotherapy with 1000 mg of tylenol and told to do my my oncologist.  I will continue to post and wish all of you success in your coming months.  2 chemos's down 2 to go followed by 6 weeks of radiation and then I get my new boobie.....

  • Ilovecoasters
    Ilovecoasters Member Posts: 199
    edited October 2014

    I went in and spoke with my boss today.  She encouraged me not to work through chemo since I have the sick time.  I am humbled by her kindness and support.  It is not the side effects I am worried about.  It's about my immune system since I typically work 12-14 hours a day while running between 16 schools.  There might come a time that I regret using the five months of sick time I've accumulated over the last 15 years, but for now I am relieved.  

    May I ask about weight gain? Are any of you experiencing? 

  • cbooklvr
    cbooklvr Member Posts: 66
    edited October 2014

    I had my first chemo infusion today. Everything went smoothly,  the day went by with tv, reading and a short nap. Picked out wigs afterwards and now feeling sleepy. Off to bed pretty soon, will post some wig pics later.

    HollyD hope you feel better soon, interested to know how the cold caps work for your hair. 

    Fabian59 glad to hear no nausea and able to work.

    Lovecoasters, wow very understanding boss glad you have sick time to use.

    Cherice

  • Nancy6540
    Nancy6540 Member Posts: 50
    edited October 2014

    Hi Ladies,

    Becca- if you can continue with your veins without too much problem do it! I just got discharged from the hospital due to a large clot in my jugular vein! They are attributing it to my port. My last infusion (fourth) the nurse (I believe) was not certified to access my port. He tried to push the port over to the needle! Next day my neck was swollen from my ear to the tube in my jugular vein! Put ice on it but nothing helped. Wednesday, called the center and they had me come down for an ultrasound where the clot showed up. Then all Hell broke loose, blankets, oxygen, paramedics and my first ambulance ride to the hospital. Once there they injected my belly with anticoagulant. What a nightmare! Gave me more belly injection every 12 hours and said I would have to inject myself for the rest of my life!! I told them I don't think I could do that! So now they have me on Xarelto, a blood thinner ( that can make you have internal bleeding) just so they didn't have to remove the port! Don't get me wrong, I need the port cause I have bad veins for chemo, but my neck is still swollen and now I'm scared to death I'm going to stroke out or just die due to  Bloodclots!

    Glad to see all of you are progressing with few or no side effects!

    {{Hugs!}}

    Nancy

  • Sjacobs146
    Sjacobs146 Member Posts: 770
    edited October 2014

    Just back from my first infusion, and I'm feeling fine.  I had a private room with chemo chair and two guest chairs.  Lots of windows, and a tv.  They weighed me first, then got me settled in the chair.  I'm going to have the same nurse every time, her name is Daisy.  She went very slowly, and explained everything in great detail.  She had a tough time getting the IV in, veins are fine, but apparently I have thick skin on the back of my hand.  Once the IV was in, she started a large bag of saline to hydrate me in preparation for the chemo.  Then she started the pre-meds.  I don't remember all of the names.  I know there was Benadryl, a steroid, a form of Prilosec, and something for nausea which will stay in my system for 3 days.  She went very slowly with each push of medication just to make sure that I was comfortable.  She also put a warm pack on my hand so it wouldn't get so cold with the volume of fluid they were pumping into me.  Once that was done, she started the Taxotere.  Before we started, I went to the bathroom, I take the whole IV setup with me into the bathroom.  At  this time, she changed gloves to a thicker type, and she put her lab coat on.  She said that when she does this, I'll know that the chemo drugs are starting.  Just goes to show how toxic this stuff is.  The Taxotere took about a half hour to finish.  I should also mention that each time she added a medicine, she double checked the IV to make sure that there was good back flow of blood.  She says that's how they can tell if the vein is still good.  Other than a little coldness from time to time, I had no discomfort at all from any of the meds.  Once the Taxotere finished, it was on to the Cytoxan.  This was a good sized bag of solution.  She set it for one hour this time, and she said that if it went well, next time it would be only 45 minutes.  I was also able to order lunch since I was to be there until 1:30.  FYI - I had grilled cheese and tomato soup, there were a few salads, sandwiches, Mac n cheese, baked scrod, and some other things.  It looks like a set menu that doesn't change.  The lunch arrived a little late, I was almost done with the Cytoxan.  Once the Cytoxan and my lunch were done, she took out the IV lines and we were good to go.  I should mention that I have a folder of material that I am to bring to every treatment.  The nurse puts all the information I need in there.  She also reviewed the meds that I need to take at home.  I don't have the Zofran yet.  The anti nausea drug that they gave me today is very similar, and I can't take them together.  I'm to start the compazine tonight at bed time, then for the next two days at breakfast and bedtime or if I feel nausea, I can take up to 4 per day.  If the compazine and the steroid don't work, I can call and they'll call in a prescription for the Zofran.  

    The social worker for the breast center stopped by to check in on me.  She just wanted to make sure that everything was going well for me and my family financially, emotionally, etc.  I'm lucky that my employer is very flexible, and I have excellent health coverage.  She also invited me to one of those look good, feel better programs that the ACS does.  My nurse practitioner and MO also stopped in to check in on me and see if I have any questions.  Everything was explained so well and so fully, I really didn't have any questions at all.  

    I go to the walk in clinic tomorrow afternoon for the Neulasta shot.  All of those possible SEs were discussed as well.  Everything was given to me in writing.  I go back for my next treatment on  Nov. 14.

  • Becca9800
    Becca9800 Member Posts: 79
    edited October 2014

    Nancy, I'm sorry that you've had such complications, very scary for sure. Glad you're on the mend. 

    Sjacobs, sounds like a good experience (hey, it's all relative), so much easier when things flow smoothly. 

    Becca is drinking like a good chemo patient should. But my taste buds are shot! What is that I'm tasting when it's plain water I'm drinking? God, it's awful! 

  • nottoday
    nottoday Member Posts: 162
    edited October 2014

    Dear all,

    One day after Neulasta shot and feeling OK, just tired (lack of steroids?). The "cocktail" seems to work - that, and a lot of yoga when I start feeling sore. Hope you all have a relaxing and healing weekend. 

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