Starting Chemo March 2015

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    YAY, Shaz!!!!

    Yeah, I had a bit of temperature excitement the day of my WBC draw. My temp was 100.3! I told them I felt fine and when I'm anxious, my temp ticks up about a degree. They said sometimes wearing a wig will increase your temp too, took it again after a little while, and it'd fallen to 99.4. Sent me home with a new thermometer even though my old one works fine. They called to check my temp and sure enough, as soon as I got home, no anxiety, no wig, I was normal again. I've been taking it regularly ever since. (My husband and both sons are now fighting off a cold.) Sometimes, it goes up to 99 and sometimes as low as 97. Wth? Something to discuss with the MO tomorrow morning, I guess.

    There's an in-person support group that meets here, but I had to miss the first meeting I was aware of due to an appointment. I hope to catch the next meeting, though.

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Thank you I'm so much more relieved than I thought I would be. I felt it would be OK but until you get the news you never know.

    Slothabout and IC ill be thinking about you and sending you lots of love. I was more emotional the second time around. Have I missed anyone?

    SC how are you feeling now? As your temp gone down?

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  • shaz101
    shaz101 Member Posts: 718
    edited March 2015

    Princess how is your temp now? Such a worry. X

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Sharon (Shaz) wonderful news about your scan results. I like your scarf braid.

    Good luck to all the ladies getting their treatment today. May it be uneventful.

    I had round 4 yesterday, I'm 1/3 through Taxol now. It was uneventful, for which I am thankful. My doctor said I looked great. My whites are a little low, but I guess not low enough for them to be concerned. Maybe because my "baby-whites" (Kathy, I think this is the phrase you use - I like it) are good. Platelets are also very good. It turns out I am anemic though - iron very low, reds and hemoglobin steadily falling, so I will be put on iron pills.

    I had steroids-induced munchies yesterday. Thankfully, I was able to sleep through the night. I'm expecting my steroids-induced acne to flare up sometime tonight. I guess this will be my cycle now.

    Have a good day, Ladies!


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  • CariAnne
    CariAnne Member Posts: 1
    edited March 2015

    HI all, newbie here. I'm just starting chemo this week Friday. I'm nervous about how it will affect me, as I've heard every possibility from nothing but mild fatigue to the worst nausea, vomiting, and debilitating fatigue. Any advice from anyone on how to go into my first treatment?

    So glad groups like this exist! You ladies are a blessing!

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    Question. Do you girls have to remind your MO to send in your steroid prescription? I called my pharmacy to renew on Monday. The autobot said it was not renewable and gave me the option of having the pharmacist call my MD to renew. I said "yes". Went in yesterday at 6 pm and no prescription, but a call was made. I think it's ridiculous that I have to call to remind them to refill, and that the original prescription is not a refillable prescription (It's steroids, not vicodin). And why once they received the call from my pharmacist didn't they call it in?

    I'm not a huge fan of my MO office. I've had issues in the past with them. Some of the ladies behind the desk are awesome, but I find the office nurses to be bitches. During chemo training I was told upfront that I was not to ask questions until she was done. They rushed me through the whole training session.My husband was 10 min late to appt as he works 1 hour away and she refused to wait and we started without him. Granted that's his fault, but that put me in a mood because most doctors have no problem having a patient wait 30-60 min in the waiting room.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Meme: That's fantastic news on your pet!

    Cariane: There are MANY threads including the sticky tips on chemo thread on the top of this forum. I would start there and do some reading.

    Welcome. You might also want to see if there is a group starting in April so you could be going through the same things at the same times. I thought I was going to start sooner than I did but I finally started yesterday and I was already attached to the March group anyway.

    I am so confused about my temp. I was feeling crappy when I went in for my prechemo checkup….feverish type symptoms and I registered no higher than 97.9 and my WBC was elevated. Now I feel find and I registered 99.7. Can't figure that one out at all.


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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Shaz: I keep reading back and I can't find the post on your bone scan but it sounds like good news so yeah!

    I was totally out of it on Ativan last night so I might have missed some stuff.

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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Ninjamary, my steroids are given to my via IV, right before my treatment, so thankfully I don't have to worry about picking them up from pharmacy. I understand your frustration though. It's not right that you have to keep chasing them.

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  • PrincessOfMeh
    PrincessOfMeh Member Posts: 167
    edited March 2015

    Shaz, I soooooooooooo know what you mean about the relief. When my pet/ct was clear, I was so relieved I bawled like a baby and did not care what anyone thought about that. Which is significant, being that I'm not much of a crier.

    My temp fluctuates throughout the day, 97.7 - 99.6. Weirdness. I'll mention it to my MO tomorrow, just to make sure that's not a sign of something horribly awry.

    CariAnne, the best thing you can do for yourself is learn about the SEs -- ALL the SEs -- and know ahead of time how to combat them. Then, if one pops up, a) you aren't surprised and b) you know what to do. You might still be miserable, but at least you won't feel helpless, LOL. For me, assembling my chemo kit (not to be confused with my chemo bag, which is full of amusements & whatnots on treatment day) of OTCs helped my confidence and boosted my feeling of control. Yes, it can be bad, terribly bad, but I took action by bracing for that as well as preparing for the worst. Plastic forks and spoons? Check! Motion sickness bracelets? Check! Foods friendly for unhappy tummies, constipation, and diarrhea all 3? Check! Not to mention the small fortune I invested in OTCs recommended by the onco nurses and my MO. The second best thing you can do for yourself is HYDRATE, HYDRATE, HYDRATE! Start hydrating the day before and stay on the sooper dooper hydration train for at least the first 48 hours. Every time you step into the bathroom (which will be often), rinse your mouth with water + baking soda + salt and brush frequently (Biotene). Try not to stress too much and remember to have fun! For me, that's being silly and wearing fun socks. Not sure why, but the socks give me a happy every time I see my feet. Still snorting about the green wig too. Heh.

    Ninja, my MO is available anytime I need her and no, she doesn't forget any meds, though admittedly I haven't needed refills yet. Fighting BC is hard enough. I can't imagine doing this without complete confidence in my medical team. So sorry you're having problems!

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    With some rest my temp is back to normal. It seems like it never went past 99.7 through the night. I'm at work now with my germ bomb (aka, 6 year old son). He has a doctor's appointment at 11:30. I called my doctor this morning with the information and they're calling back to let me know if I need to come in.

    I had to come into work to get my computer. I actually feel pretty good this morning so we'll see. I have bad tree allergies and here in the Charlotte area they're in full bloom. The symptoms I have feel more like allergies than a cold.

    Well, back to work! I need to finish up a few things before I take my germ bomb to the pediatrician. I'm bathing in Purell here!

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    I feel for you with the allergies. I am lucky not to have them but my husband and daughter have been having a hard time lately. I am glad your fever came down.


    Did someone say NOT to take tylenol for bone pain? Because they gave me more hydrocodone which has tylenol in it. Is this bad?

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    Well my MO office called and made a liar out of me (LOL..of course they did) The steroid pills were only for the first infusion treatment. I find that weird, but I'll accept it. On another note ... I thought I had B.O. yesterday, but it was only on one side. Then I noticed my lymph node incision site has a small opening. It doesn't look infected, but my surgeon's office scheduled me in ASAP today (I love that office) to look at it. Hope it won't affect tomorrow's infusion.


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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    The reason they don't want you to take Tylenol (or Motrin) is that if you have a fever it will reduce it as well. Which is NOT a good thing when you need to keep track of your temperature. I don't know how much hydrocodone would lower a temperature though.

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  • Leighrh
    Leighrh Member Posts: 317
    edited March 2015


    Someone shared this story with me and I just wanted to share it with you ladies.... I thought this sums up chemo and having to do it perfectly.. at least how I feel! :)  Although I do not start until tomorrow I do feel like a prisoner to this crap........  and THIS is my favorite line from it.....

    I am not "surviving" cancer or "battling" cancer or going on some dumbass "cancer journey." My life is just paused. I'm not living at all right now, because a life in which I'm tethered to an IV machine for 10 hours at a time is not mine. It belongs to cancer. I'm in a cancer prison, and I am chemo's bitch.

    http://www.cosmopolitan.com/health-fitness/a37555/i-have-cancerand-it-sucks/?src=spr_TWITTER&spr_id=1440_156633332&utm_content=buffer1fbea&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    SC: That makes sense but it wasn't mentioned. Are you all mostly taking Claritan or Oxy? What is working for you?


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  • BBwithBC45
    BBwithBC45 Member Posts: 727
    edited March 2015

    Leighrh - that's what I was telling my husband from the beginning. I feel like I'm trapped in this body with cancer, like I'm a prisoner.

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  • Trvler
    Trvler Member Posts: 3,159
    edited March 2015

    Ugh. Just got a $2500 hospital bill. Need to figure out why it's so high. It was for the biopsy I think. But the insurance paid so it is the hospital I have to take it up with.

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  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    Congrats Shaz on the brain scan - I feel your relief! I truly believe nobody understands except us going thru it. And when they say you feel alone sometimes it's so true. So freakin happy for you!

    Welcome to newbies - read & prepare has been my motto. So far so good. Two days after first session and the bone aches are hitting me the most,just kinda circulates around my body. Bit of queasiness but not too bad, food smells starting up,yuk. Taking a day to rest and do household stuff. Can't seem to focus on tv or reading.

    SC Coqui so happy u didn't need a trip to the ER. Best of luck with sick child, hope he's better soon.

    To the girls in for "spa" treatments today - hope you rock it and remember its one day closer to the finish line!

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  • SC_Coqui
    SC_Coqui Member Posts: 133
    edited March 2015

    Claritin for allergies but it's helped with the Neulasta side effects.

    I spoke with the nurse and they told me to keep monitoring my temperature and wear a mask (because of son and husband) while at home.

    I'm waiting at my son's pediatrician's office so he can be seen. Not touching anything and sitting at the end of the waiting room away from everyone!

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  • eheinrich
    eheinrich Member Posts: 792
    edited March 2015

    Shaz: I'm so happy for you. I've been sending any extra good mojo I had your way.

    Carianne: The weekend before my first infusion I hit the stores and also made a chemo basket - one for drugs (diarrhea, constipation? ready for both, etc). It was overwhelming seeing all the possible side effect remedies in one place but also sort of empowering. Also picked up unscented soap and sunscreen in case smells bother me.

    Currently I feel like a ticking time bomb. 48h out and possibly in the SE start zone.

    I love all the pics of you ladies with bald heads. Knowing that we can look lovely without hair is making me feel better about that aspect.

    :)

    e

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  • Carrie37
    Carrie37 Member Posts: 331
    edited March 2015

    hi ladies, I've been readin along now and then but this is my first post. I had my second round of A/C last Thursday and the following days have been rough. My hair started coming out in clumps on Friday so I had the DH shave my head on Saturday. Previously, I had bought a wig but I've found that it is uncomfortable and I'm not wanting to wear it at all. My DH loves the way it looks and, I must admit, it does look pretty. I don't know what my problem is but I'm just not wanting to put it on. I am supposed to take my son to a birthday party today and I don't know what to do. I ask my DH if he thinks I should "warn" my friends so they can prepare their kids because I will just wear a baseball cap and DH says "wear the wig." I'm feeling pretty sorry for myself these past few days. I Am sure it's combination of everything. I feel very alone and i know that is not true but definetly a rough patch right now. Cancer sucks !!

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  • so-she-did
    so-she-did Member Posts: 202
    edited March 2015

    My biggest pet peeve before starting chemo was all of the "uplifting" stories people told me about how their friend, etc. just sailed through chemo and how much easier chemo was these days. I wanted to shout at them, but I am me! I will respond to chemo the way I respond! It was strange how much pressure I felt to sail through chemo without side effects. Well, I've had the side effects. I've cried, I've moaned in pain, and I've wondered when the bone/muscle pain would end already! That is just how it is for me. This is who I am and how I respond to chemo.

    I, too, popped up a low fever (and sore throat) and immediately hopped on the phone to my mom (she went through chemo last year for Hodgkin's lymphoma) and she said it was totally normal and to just watch to make sure it didn't go over 100.5. I saw my oncologist yesterday and he reiterated the same thing. I'm not sure why that isn't on the list of normal chemo side effects since many of us on here weren't aware of it and yet many of us have experienced it. I did take Tylenol once I was convinced that it wasn't going to go any higher. I also made sure to check my temp between each dose. There were also times when I was convinced that I had a fever but was under or at normal.

    Shaz - I am so happy to hear that your scan came out fine!

    To those in the chairs today - I hope things go well!

    Welcome to all those who are joining us! I don't post all that often but I absolutely love this group and I hope you will, too!

    And to those in the everyday-ness of this - keep on truckin'.

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    CariAnne- welcome.. You got great advice from all and I can't stress enough what PrincessOfMeh said. Read the thread, the stickies in the discussion boards about useful tips. But POM pretty much covered it.

    You are more than welcome to stay in this thread, or you may find the support more "in the moment" since you are starting so late in the month, to take a peek in on the April group.

    Be prepared for anything. It will help you to feel in control and will calm you. Then we will all hope for the best and we will be pulling for you no matter what SEs come your way.

    NinjaMary- what a total nuisance about the refills and bitchiness. I have encountered nothing but 100% support from every single person in my mo office. I just checked my script. It also says no refills. They gave me enough for about 3 treatments, so thanks to you, I now have it on my calendar to ask for a refill the day of my third chemo. I take 2 four mg tablets the night before, 2 tablets the morning of, an hour before, then they give it to me in the bag, 2 more that night, and 1 for the next 3-4 days. So about 10 per treatment and they gave me 30, no refills. I was so overwhelmed when I first had all of the scripts filled, I barely comprehended when to do what.

    I start my second round of steroids tonight and will shortly become a raving, insomniac, shopaholic, emotionally crippled WHAAACCKKKKJOB. I'm thinking of cutting up my credit cards today. Of course Williams Sonoma and Etsy already have them stored. I dont even have to get out of bed make a thoughtless purchase at 3 am. Maybe I'll lock my iPad and phone in the car too. haha

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    SC- since hydrocodone is a combo of tylenol and oxy it would definitely reduce a temp.

    Hope yours is down now and you escape getting the crud you are surrounded by

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    Leighrh! Perfect! I literally laughed out loud and will lift this with permission to use in my caringbridge blog.

    You and I are together in the chair tomorrow. I'll be with you in sprit!

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  • Leighrh
    Leighrh Member Posts: 317
    edited March 2015

    Lift away!! I really laughed too!  I am super emotional today so I def needed the laugh.  I feel like today is my last normal day :( Sort of like normal me is dying

    Maybe I will get out all my emotions today so I will be good tomorrow :)

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  • ninjamary
    ninjamary Member Posts: 306
    edited March 2015

    jackbirdie,

    Glad I'm not the only insomniac. Woke up at 3 am and did not know what to do with myself. Etsy would be very, very dangerous to me!

    Trvler,

    I just added up all that my insurance has paid so far...It's over $40k and that does not include chemo! I've paid out $2200 (that's my deductible and out-of-pocket)

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  • Meme117
    Meme117 Member Posts: 194
    edited March 2015

    So I finally read thru posts I missed - I think there are 33 women who have posted they are having chemo this month, boy that's a lot. I'd love to know real names if you want to share and where you are from. So far with info I read - we are from far and wide

    1 Australia, 3 Illinois, 2 North Carolina, 5 California, 2 Oregon, 1 Pennsylvania, 1 Alberta, 1 Georgia, 1 Nevada, 1 Delaware, 1 Ohio, 1 New York, 1 Iowa, 1 Massachusetts and a bunch idk.

    Katy you crack me up about the shopping but I think I'm getting ready to hit etsy

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  • Jackbirdie
    Jackbirdie Member Posts: 4,693
    edited March 2015

    welcome Carrie- wear whatever the F you feel like. Of course you feel sorry for yourself. You are entitled to. You have effing CANCER!

    Welcome once again to the group. You are invited to unload here at any time about any thing and there will be no judgements. Only love. And understanding. Good luck today.

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