Chemo in May 2014

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  • noonrider
    noonrider Member Posts: 464
    edited May 2014

    Chev0814, I have been a lot more tired lately too. I think it just has to be the stress of it all. Its a lot of mental and emotional dirt we're rolling around in. Even though we're strong, and we're just rolling with the punches, those punches do take their toll. Also, our bodies are trying to heal from the medical assaults of surgeries. 

    I had my port put in yesterday and it is *really* bothering me. Partly because I'm reacting to the tegaderm that was put over the top of it and it itches like crazy. Looking forward to that coming off in the morning. But also, it is so darned tender I can't imagine having anything poked into it tomorrow. I feel like if I can't handle this stupid port, how will I handle bone pain?????

    And now I have a beef! I have not been given any scripts for pain meds or anything. I hate to assume they are giving them to me tomorrow at my first chemo treatment only to find I should have  had them already. 

    I'm sure this is just all my anxiety coming out. My husband will be with me for the first hour or so of treatment tomorrow, then he'll come back to pick me up when I'm done. I want tomorrow and Friday's Neulasta shot done and behind me so I can stop having anxiety about whats ahead. 

  • linda505
    linda505 Member Posts: 847
    edited May 2014

    Hi Lespring - I haven't been given anything for pain from my MO nor was I given anything for pain for my port placement.  I was given pain meds after my BMX but only used them for a couple of days.  My port was painful for a couple days - felt like someone had punched me hard many times in the shoulder - a week out from placement I hardly felt it and now I only notice it because it is a bump - no pain.   I did not get EMLA cream for my port.  The nurse sprays it with a little numbing freeze stuff when she accesses it for blood or treatment and it hasn't hurt at all.   I am not sure what chemo regime you are doing but pain wise I would describe mine as more achiness - kind of like when you are just getting the flu and you start to get achy.  The bone pain that I got from the neulasta shot was minimal and handled with tylenol - I did take claritan starting the night before the shot and for 10 days - don't know if it helped or not.   The worst bone pain was in my sternum and shoulders and that came on about 4 days after the shot.  I would say in the 15 days since my first treatment I had some sort of manageable pain for a total of 5 days - and not all in a row and not all day long on those days.  

    Treatment day and shot day were really non events for me - everything went smooth and the nurses keep a close eye on you the first time to make sure you are doing ok.  Tell them anything you feel or any sensation you have during treatment so they can make note of it for the next time - they can tweak the premeds and things to make it easier.  They have a wealth of information and experience and all kinds of ideas.  Thank goodness for the chemo nurses.  Don't hesitate to ask for pain meds or anything else you think you want or need.  The MO will either say yes and give them or tell you why not and give you something else.  If he/she doesn't - then ask for a new MO.  Remember they are working for you and you need to be as comfortable as possible.  

  • debiann
    debiann Member Posts: 1,200
    edited May 2014

     sorry about the port discomfort lespring, it does get better. Mine was put in during my lumpectomy and it bothered more tham the lump incision. The good news is in a couple weeks it will settle in and a layer of fat grows around it and you hardly know its there.

    what is your port like? Mine is all under my skin, but it sounds like some ports have something external on them.

    It is difficult facing the cancer dx, being confronted with our own mortality, but you have to remember we face risks and dangers everyday of our life and don't hyper focus on them. The first day of my dx I said to my DH "it would be easier to just get hit by a truck". Since then every time I hear of a fatal crash I think of how lucky I am to have something I can do something about.

    good luck with the first chemo. 

  • Kazzy115
    Kazzy115 Member Posts: 122
    edited May 2014

    I'm stuck on traffic and will be quite later than my appt this morning.  Think they'll start without me?  

  • noonrider
    noonrider Member Posts: 464
    edited May 2014

    sitting in the chemo chair. One drug left. So far so good! Port was so sore because of the reaction to the tegaderm over  it. Skin was blistered all the way around it. No more tegaderm for me! The rest of the tenderness is tolerable and I promise to stop whining about it. ;-)

  • debiann
    debiann Member Posts: 1,200
    edited May 2014

    one round down, yeah lespring! What chemo cocktail are you getting?

  • lesliecusana
    lesliecusana Member Posts: 97
    edited May 2014

    Well port is in!  I was hoping to be asleep during but was not! Felt some pain at times! They gave me valuim before they started(nurse had hard time getting IV in so glad to have port now)and more valuim when I was feeling too much pain! Had allergic reaction to some marking tape they used and took off as soon as dr saw redness! Boy was it stuck to my skin I think he took the 1st layer with it!   They pushed Benadryl also in IV after that! Forgot what he called it! Lots of local shot too, It was tolerable and seemed to only last 15mins  once doctor started what he needed to do! Right after I teetered my way with DH driving across the street for chemo with port already accessed  it was easy smeasy!  Have some bruising and sore! No dressing just sites with derma bond! Not to get that area wet 48 hours! 

  • noonrider
    noonrider Member Posts: 464
    edited May 2014

    Ok, so I'm home. Like someone said in a previous post, this first tmx was anti-climatic…mostly…they did have a hard time accessing my port because it was full of clots. Took several minutes of "blowing it open" (nurses words). They weren't happy the dr. put tegaderm over the port because it pulled all the steri strips off with it. Anyway, it finally got going. Got through all the anti nausea meds, and the steroids, and both chemo drugs (Docetaxel and Cyclophosphamide) The room was FREEZING and everyone was shivering and asking for warmed blankets, and then I realized I was HOT and sweating. I didn't think anything of it but the nurses came over to stare at my face, "No. No she doesn't look flushed to me." "Nope, me either." After some discussion it was determined I was just having a hot flash (which I told them) and not an allergic reaction. I have every confidence that if I did have an adverse reaction to something, they would be on it! LOL 

    I got through all the drugs without any other sensations. Nothing. They unplugged me and I went down to the lobby to wait 1/2 hr for my husband. After about 10 minutes of sitting there it suddenly felt like someone punched me in the stomach. I made a run for the bathroom and didn't know which end to put down first. Oh I was miserable. I thought I was slightly better, went to wash my hands and turned right back around to the stall again. Everything finally calmed down about the time my husband was due to arrive. He had already filled my meds so as soon as I arrived home I took an Ativan and went to bed for a couple of hours. Woke up and was able to eat dinner. Two hours later and dinner has stayed put. Thinking I'll take the alternating nausea med to stay ahead of things. 

    Tomorrow is an important day for my daughter, with a big awards ceremony at school. Hoping I feel as fine as I do at the moment so I can attend. Will go to the onco clinic in the afternoon to get my neulasta shot. Also start taking oral decadron tomorrow. 

    So thankful today is behind me! Especially thankful port is not really bothering me now that we have the tegaderm off! Thanks to all of you for your support. 

  • Chev0814
    Chev0814 Member Posts: 10
    edited May 2014

    lespring- everyday I get 'how do you feel?' and I too have not started chemo yet so I feel great...sometimes I don't think people know what to say... And for some reason we feel like we need to say something even though we know they don't...I mean I have never felt bad not for a minute since I have been diagnosed and I think that is the hardest part for me... I don't feel like I should be sick... But chemo is coming and will begin on Monday... So I hope to continue to feel good... Good Luck in your Journey... 

  • lesliecusana
    lesliecusana Member Posts: 97
    edited May 2014

    Lespring sorry you had nausea and trouble with your port the 1st day!  I had derma bond glue and no steristrips over port wound so I did ok when they took off tegaderm! I'm still red from procedure tape thou!  Hope u feel well enuf for your daughters big day! 

  • MaDee53
    MaDee53 Member Posts: 30
    edited May 2014

    Hi lesliecusana, you sound like you are doing fine. I start Taxol and Herceptin on Wednesday of next week, a little scared, still debating on getting a port. I'll see how it goes. Oh, by the way, very nice looking dog!

  • Lakegirl1
    Lakegirl1 Member Posts: 316
    edited May 2014

    Tomorrow is the big day...tell me again why I gave to get sick, when I feel fine, to get better???  WTH?!?!?

  • Rosiesride
    Rosiesride Member Posts: 513
    edited May 2014

    chemo sucks...but if it sucks the cancer out of you...then YEY chemo...that was a card I got from a friend....it's a long ride this chemo crap...after the dx, waking up every night with cancer being your first thought...getting past the ups and downs of tests, surgeries, scares of results....life became just " do what I gotta dto get this shiz done"!!   My county recently had our relay for life where my school where I teach pretty much rallied around me...it was honestly the first time the thought even entered my mind that I am a survivor...or brave...or that cancer will end my life...I just never allowed that thinking to enter my mind ....I knew my life will change for awhile while I am in this new routine, but I made myself think only positive things...I didn't have time for this hiccup in life....and as I went through, and continue to go through , chemo and such....I still feel blessed...we have a chance to get better and move on...some are not so fortunate....parents lose young children to accidents and illness and to me that is horrific....GOD has his plan for us....I like to try and see the blessings through our hardships...so hang in there and remain hopeful and always see your blessings!!  Surround yourself with positive people and beauty!! Xo Rosie 

  • writinghelps
    writinghelps Member Posts: 88
    edited May 2014

    I was just thinking about this again (the comment we get frequently "you are so brave") before I read your post diebiann.

    I am not sure what would be better.  Probably just "I'm sorry" and leave it at that.  I know they mean well but the word brave doesn't exactly fit.  Brave fits if we all had decided to go on n a Quest, ya' know?  We didn't choose this.  I think there is another word that fits the situation and relays what our friends are trying to say.  But someone started with brave (and survivor) and it's stuck.

    Maybe the word is persevere?

    "Wendy, You have such perseverance."

    Meh.  Maybe not.

    Now I am on a quest, to find the right word.  ;-)   

  • collscoot
    collscoot Member Posts: 1
    edited May 2014
    Back in 2005, my husband donated 60% of his liver to me due to autoimmune disease. In February of this year, I was diagnosed with Stage 1 breast cancer with negative lymph node involvement. My Onco was 27 so it was decided to start chemo (next week). Question is, anyone have info on CMF? I can't get TC because of liver transplant. Thanks so much!
  • JKLB
    JKLB Member Posts: 20
    edited May 2014
    • Hello All.  I am lucky to have found you.  I had my port put in yesterday...agree that it is UnFun!  I am very sore today and taking pain meds and icing it.  I can hardly wait to take the bandage off tomorrow and see what it looks like.  I start Cytoxan and Taxotere on Monday.  Having the same fears everyone else discribed.  It is a comfort to know that it was anti-climatic for most.  Has anyone seen or considered icing fingers and toes to protect your nails?  I understand that they can be damaged, split and become painful with Taxotere.  I am very lucky that I had Rx for numbing cream, steroids and three anti-nausea meds ahead.  I have prepared by purchasing over the counter remedies for every possible known SE.  I hope to not need a single one.  I had not heard of the Biotene mouth wash.  I will look that up and get some.  Has anyone used Ginger capsules ahead and after to prevent nausea?
  • noonrider
    noonrider Member Posts: 464
    edited May 2014

    I had my neulasta injection today. So far, so good. I have waves of nausea but usually around the time I'm due for my anti-nausea meds (alternating a couple of drugs Lorazapam and something else I forget now.) I think my drowsiness is coming from those meds and not the chemo drugs. Praying tomorrow, which is day 3, is as good as today was. although I slept a total of 5 hours today, I still got some living in there too. ;-) Im able to eat, but am craving proteins which is odd for me who usually crams carbs. 

    My port feels TONS better today! The biggest problem was clearly the allergic reaction to tegaderm. There was one big blister all the way around the edges. Now I just have a very tiny bit of tenderness in my neck where the tubing runs. Its just a bit creepy to look at. LOL

  • debiann
    debiann Member Posts: 1,200
    edited May 2014

    glad you are feeling well lespring! 

    I was having some mouth issues, the first couple days I thought it was the usual bad taste, mouth sores, but some smart ladies on one of the other threads told me it was thrush. Called my mo today who suggested magic mouthwash, doubting it was thrush. I insisted on being seen and thrush it is, caused by the steroids. On diflucan for two weeks plus started probiotics. Read on the internet to open the probiotic capsual and sprinkle the powder directly on the tongue. OMG relief finally! The awful tasting furry dog has left my mouth.

    The worst chemo se I had was burning in my throat and stomach. My pharmacist suggested I ask my mo for a script for sucarafate, a liquid that will coat the soft tissues and help prevent the burning.  Mo agreed and told me to pretreat with this next round.  So hoping this will work.

  • Lakegirl1
    Lakegirl1 Member Posts: 316
    edited May 2014

    Hi all...had my first round of Taxotere and cytoxan yesterday. When I first got there they took me to the lab to draw labs. I asked if they were planning to use my port.  They asked me if I wanted them to, um yes, isn't that what it is for???? After all the issues requiring PICC line, etc...USE THE PORT!!!   So, after the blood draw, lots of info about when to call, the started the aloxi and decadron.  That went fine, then flush with saline. The then started the Taxotere. I' m sharing the next part just for awareness and to stress to let the RN know what is different then than from when you started. As soon they started the Taxotere my tongue started to feel "fat" for lack of a better term. Also, it became  a very concerted effort to swallow. The RN immediately noticed the odd look on my face, and immediately stopped the Taxotere. This also brought out the pulse ox, BP machine and the oxygen. The O2 was just in case.  They  added the Benadryl + and Pepcid! slowed the Taxotere way up and all went well.  I did constantly drink water with ice while I was there.  Per RN, could help with mouth sores from Taxotere and keep everything diluted for bladder issues from cytoxan.   When we left, I had very slight headache,  The headache last night went into edge of nausea...I never considered it from the steroids. I also take adderall, so that could have made for an interesting combination!!! I took a zofran, brushed and swished with biotene and put my self to bed. I slept until 8:00 am. The headache seems to be gone, but my face feels strange, a little numb and tingly at the same time. My tongue is weird too, which is why I went ahead and started with the biotene.

    On the recommendation of the RN, I am avoiding my favorite foods for a few days.  She said you don't want to end up hating them.  Also, avoiding anything acidic, esp tomato based. 

    Also, if you wear contacts, I recommend glasses. It didn't take long for them to dry out, especially, if you doze from the meds. That was more annoying than anything, made it difficult to read. 

    Thanks again all...I may have not chosen this path, but it is reminding me of what I am truly made of!!!!

  • jasonalun
    jasonalun Member Posts: 16
    edited May 2014

    Hi everyone, got my first treatment and Neulasta shot in and it was rather anti-climactic, as some have experienced. I put myself through more needless stress prior to it than I ever experienced during the actual event! Sorry that your port was so sore Lespring! Glad the reaction is going away and hopefully your next ones will be as easy as mine. My port was not sore at all even right after the surgery, just the collarbone area higher up where they threaded the catheter under. Not sure why, maybe since I'm fairly lean there wasn't much "clearance" for them to work with and they had to brutalize my muscle in that area more. Anyway, that only lasted a day and a Vicodin took care of it in the meantime. I was apprehensive of how it would feel when they jammed that rather big-looking needle into the port, but aside from the light prick at the skin (which didn't persist) it didn't hurt at all. So that was a big relief.

    I was afraid I would be hit with waves of nausea or some kind of reaction when this stuff hit my veins, but it was really a non-event! I didn't notice any taste, or any odd feelings at all. However, that night I got REALLY bad acid reflux which somehow also triggered hiccups! I've been suffering on-and-off every since then with hiccups. That's the worst thing I've had, other than slight nausea every so often for which I take the "as-needed" nausea pills they gave me, in addition to the regular Dexadrone (or whatever it's called Dex-something...) I take for three days after the infusions. So far I can't complain much, just really the hiccups. I wish I knew what to do about that. I've tried all the tricks - water drinking, holding breath, etc. Sometimes they work, but mostly not. It's not so much the annoyance as the pain, after having it for a couple of hours you start to get real sore. :-( I remember someone else on the boards saying their husband had experienced severe hiccups as well. Have any of you ladies? 

    Here's to hoping the rest of my treatments (and yours!) go this easy, but I'm not necessarily counting on it. I'm sure the cumulative effect starts wearing your down eventually, but I'll take each day/week as it comes and enjoy what good days I have. 

    Jason

  • SharonDe
    SharonDe Member Posts: 222
    edited May 2014

    Jason - popping in from the April Group.  I also have had hiccups, reflux, heartburn (doing TC). It caught me by surprise the first time.  I called and the nurse recommended OTC Prilosec. That's worked wonders.  The decadron steroid seems to initiate this problem for me, as it started before my infusions of or treatment no. 2, but after the pre-chemo,steroid loading.

    The reflux/hiccup issue seems to be a fairly common SE, but not one my nurses talked about much before chemo.

  • jasonalun
    jasonalun Member Posts: 16
    edited May 2014

    Thanks for sharing that, SharonDe. Unfortunately, I'm already on Prevacid (a close cousin of Prilosec - I took that too once but it doesn't work for me as well) and have been for a while as I have GERD normally anyway from a hiatal hernia (leaky valve at the top of the stomach). Since it doesn't appear to be working with this added drug influence, I'm not sure what to do. I took some Tums to counteract the acid but all I can think of is to ask for a script for a stronger drug like Nexium and hope it works better than the Prevacid. Otherwise I'll have to just chug Mylanta or something every day when I get hit bad with it (it's mostly an hour after meals). Not a fun thought. The hiccups are really horrible (got them right now as I type this!) and it's beginning to make my chest/esophagus sore. Wish there was something I could take for that - muscle-relaxant maybe? I'll call and ask. 

  • Lakegirl1
    Lakegirl1 Member Posts: 316
    edited May 2014

    Jason...I too have GERD, they changed my Protonix to Nexiumm. I also took that during bad times when I was prego...worked like a charm...

  • jasonalun
    jasonalun Member Posts: 16
    edited May 2014

    Thanks, LakeGirl, I'll ask my onco about that. My Dad and Mom are both on Nexium and it works great  for them. I don't really want to go on that if I can avoid it because it leeches calcium from the bones and I  am involved in athletics and don't want the potential added risk of bone fractures, but if I have to to get relief from this I guess I will, and just try to take supplemental calcium to minimize the side effects.

  • Lakegirl1
    Lakegirl1 Member Posts: 316
    edited May 2014

    Jason...don't forget...burning your throat with acid can lead to Barrett's esophagus ...that is no good either...

  • writinghelps
    writinghelps Member Posts: 88
    edited May 2014


    jasonalun, excuse me if this is too elementary (and you may have already tried it), peanut butter for hiccups?  That always works for me for normal hiccups. Not sure if it would for what seems to be gut issue induced hiccups. 

  • jasonalun
    jasonalun Member Posts: 16
    edited May 2014

    Thanks for the tip about peanut butter.  I've never tried that but if they come back I might. I think it is induced by the gas pressure in my esophagus from the high stomach acid and gas bloating from something they have me on, either the chemo or, ironicially if it were, the anti-nausea drugs.  Now that I have a bit of respite from the bloating (took simethicone last night) the hiccups have departed, thank God. They were really starting to hurt.

    Lakegirl, yes, I'm aware of Barrett's esophagus and have been checked in the past for it. Only 20% of people with chronic GERD get it so I'm not too worried but yes, I do want to get this new, more powerful, drug-induced GERD under control.

  • HomeMom
    HomeMom Member Posts: 1,198
    edited May 2014

    OMG avoid your favorite foods? What do you eat then? I start my first infusion May 30th. How soon after your appt has anyone felt their first "symptom"?  My doc told me to start taking the anti nausea meds after my appt and for every six hours thereafter.  If you take Claritin for the shot neuawhatever, how long do you take it?

    I'm trying to figure out what my work schedule should be and thought I would just stay the course and see how I feel. Right now I have Mon/Tues off and if I have my treatment on Fridays I will feel the effect possibly on Monday and have to drive to the docs office for the shot on that day. I'm thinking about moving it to Thursdays and having off Sunday and Mondays so I can go back the next day for the shot and if I feel less then stellar, it will be on my day off. good grief.

  • debiann
    debiann Member Posts: 1,200
    edited May 2014

    I had a Thursday infusion.  I felt fine at work on Friday.  Saturday and Sunday were good days, too, but I don't work those days and I did try to rest.  I went to work Monday, but didn't get much done. Tuesday, I was totally useless, laying on the floor of my office wondering how I was going to drive myself home.  I stayed home Wednesday, Thursday and Friday.  In addition to some stomach issues, I got oral thrush from the steroids.  It was AWFUL.  I'm going back to work tomorrow and feel fine now.  Eleven days till round two :(

    I didn't take anything for the neulasta shot, and and so far didn't have any se from it.

    What will you eat?  You will search for something that doesn't taste like cardboard, lol.  I craved meat and salty things, which is unlike me.  Soups with lots of broth are good because you need to stay hydrated and water doesn't taste good.  Gatorade orange isn't too bad. 

  • linda505
    linda505 Member Posts: 847
    edited May 2014

    Hi Homemom - what chemo regime are you doing - knowing that will help with someone doing the same letting you know how they did - but everyone is different.  

    I have treatments on Tuesdays and shot on Wednesday.  I feel pretty good until Friday - then pretty useless from then until the following Tuesday.  Saturday and Sunday being my worst days.  I didn't have any issue eating - some things tasted a little off so I didn't eat them.  i also made sure I had a selection of items on my plate to eat just in case.  I tried to make sure I had plenty of protein.  Peanut butter is my go to in the mornting.   I also have some protein shakes here to use if I don't have an appetite.  I had two days where I just didn't feel like eating so I had those.   My water tasted fine but I also mixed half flavored vit water with water sometimes.  I avoided really spicy things - tried to eat more bland items - I found the things that were spicy were the things that tasted the most off to me.  I took Clartin for 10 days starting the night before the shot - so the night of chemo.  I did have some pain the 4th day after the shot - but it was not bad - was mostly in my sternum and shoulders.  I am gonna ask them to give me the shot in my stomach this time to see if that lessens that pain as suggested by someone here.  Remember everyone reacts differently - so I think alot of this will be trial and error - don't hesitate to call your Mo's office about anything.  I found the nurses great about giving me suggestions on things to do and thing to avoid. 

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