Starting Chemo in March 2014

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  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited March 2014

    Well, turns out the surgeon did leave the tubing in my port so that I could get my first infusion today. Only I did not remember them telling me about it, at all. They called me at 10.30am to ask what had happened as they'd been expecting me for my infusion.  I was rescheduled to the 13th but I went in to pick up lab order and the nurse said I could go in today if I wanted.

    So I said yes. I was totally unprepared, I had nothing to entertain me, no water, no food etc. My husband was at work, so I called to let him know I was going in.  He turned up because he didn't want me to be alone my first time.  It took a while, about 4 hours, but it was pretty simple and painless. 

    I went to the pharmacy to get my antinausea meds. While I was waiting I broke out in a huge sweat and got all hot and flustered. Started feeling nauseous while waiting, hopefully due to the fact that I hadn't eaten. I grabbed a bagel and slowly ate that and it's helped, but I still feel a little queasy, and I have that metallic taste thing going on.

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  • NinaW
    NinaW Member Posts: 110
    edited March 2014

    Kiwilady - you had yourself a little surprise ninja chemo today! Maybe it's better that way, because you didn't have a lot of time to get nervous, and now you know just what to expect for the next infusion.

    I hope your stomach has settled down, and that you spend the night resting comfortably. That's one down for you!

    Alli, how's the swelling? Any relief today?

    Lovemyboys - yep, turned 50 the week of the lumpectomy. And lately, I'm feeling every single minute of that 50, but thank you for making me feel as though I'm hiding it :-) My avi pic is the result of a Groupon for a photo shoot, and really not the way I look when I wander through the supermarket on your average Tuesday.

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  • Maggiemay1220
    Maggiemay1220 Member Posts: 27
    edited March 2014

    oh Mom2be, I am so sorry you are dealing with this now.  You should just be able to enjoy!

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited March 2014

    wow Kiwilady! Stinks to start that way  but YAY for one down!! 


    thanks, MaggieMay! it is a great distraction though. 

    All i, thank you so much for starting this thread!! 

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  • Jmenchaca78
    Jmenchaca78 Member Posts: 19
    edited March 2014

    question: so I know it is suggested to bring snacks to treatments but any advice on what snacks to bring? Also is Biotene used to prevent mouth sores or to treat them?

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  • AKJ
    AKJ Member Posts: 190
    edited March 2014

    I think Biotene prevents mouth sores.  I've been using it a lot since my first treatment and haven't gotten any sores.  Check to see if they provide snacks at the infusion place.  My clinic provides snacks and lunch, however, my partner went out and got me a great sandwich while I was there.  I think it's best to eat a healthy meal before you go in and take those anti nausea meds!

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  • jmg58
    jmg58 Member Posts: 185
    edited March 2014

    Hi, all.  I am brand new to the boards, also starting chemo TC through a PICC line on 3/13/14.  I am absolutely terrified but had a visit with the oncologist today who said I should be fine.  I'm worried because I have some sort of an autonomic nerve problem and even the flu shot made my heart race and gave me colon problems for three months.  Just got over that.  I'm hoping the TC won't be too rough on me as I don't have a big support system to help me out.  I'm glad to meet you all here and hope to catch up with everyone's posts.

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  • cancerisnotmyhappyplace
    cancerisnotmyhappyplace Member Posts: 49
    edited March 2014

    jmg58- welcome to the group. We cant be there in person to support you, but we are here to share and virtual hug. Sorry you have to go through this.

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  • Xrayalli
    Xrayalli Member Posts: 237
    edited March 2014

    kiwilady-that must have been a shocker, but I agree with whoever said maybe better not to have been stressed over the anticipation. Except for not having things to bring :)

    Mom2be-I'm glad we have this thread, too. It has helped me tremendously. 

    Nina-wish I could say I'm better. I still feel like I'm smuggling something in my armpit and the burning sensitivity in my upper arm is so very uncomfortable. My arm isn't swollen, it's centralized in my armpit near incision so it's normal. 

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  • Maggiemay1220
    Maggiemay1220 Member Posts: 27
    edited March 2014

    Alli, sorry that you still have that nasty swelling.  How are your fills going?

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  • CancerVixen
    CancerVixen Member Posts: 28
    edited March 2014

    Good Morning Ladies,  After a really rough weekend I was feeling a little better on Monday and and then yesterday wound up being a horrendous day.  I hope I am not scaring anyone.  I just want to report what I am experiencing.  My doctor said it is the Perjeta that is causing all of the side effects to be that much worse.  Yesterday I slept on the couch the entire day while my son was at school.  I couldnt sit up or even lay on the couch and watch tv.  Eyes had to be closed.  My stomach hurt so bad all over.  The only thing that helped the pain was sleep.  I was able to eat a whole wheat waffle with nothing on it and some water and a little white rice but everything I eat hurt my stomach more. Everything tastes really bad too.   When I went to pick my son up from his after school program (which literately takes less than 10 minutes) I came home crying and called his babysitter to come over and feed him and bathe him and get him ready for school today.  I am so happy to have this woman even though she is costing me a fortune!  Today so far I am sitting on the couch and writing to you, so this is much improved from yesterday!!!  I am actually going to throw a load of laundry in when I finish.  I really admire all of you who are going to work through this.  There is no way up until this point I could get myself to work.  Dr told me with my drugs to expect 10 bad days.  If I can get into work the week before my next treatment I will consider that a major victory.  My scalp is sore and itchy and my mouth has been on fire!  Not sure if I mentioned I have never see my tongue look so red!  My friend left me the biotene toothpaste and it really helps alot.  My regular crest burns like crazy. Im sorry I havent been much of a support to any of you.  Hopefully when i am feeling better.  Dawn

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  • NinaW
    NinaW Member Posts: 110
    edited March 2014

    {{{{{{{{{{Dawn}}}}}}}}}}}}  Are you kidding???  It's OUR job to support YOU right now, crazy. Are you drinking lots and lots of water? I know it's a major drag, but on the upside, water won't taste bad, and you know it really does help to flush out the toxins and speed up the process of getting it all out of your system. I know it's rough to put any food into your system when your stomach is telling you to back off, but if you can manage to slug down an Ensure shake or two, it will definitely help you to feel better. 

    Perjeta sounds like a monster - it's a good thing you're tough as nails and more than able to battle back. If you manage to find the energy, you might also consider taking a nice, long, bath with epsom salts to ease your aches. Just put on some soothing music and let yourself get lost for a while!

    Finally, I think it's mean to compare yourself to anyone else when you're undergoing treatment. These side effects are so random, and I know from watching my sister that she'll breeze through two treatments with relative ease, only to have the next one knock her flat on her back. You do what you can do, you know? Now is the time to be nice to yourself. 

    We're here if you feel like chatting. And we're here if you DON'T feel like chatting. We're here, and thinking about you and hoping you feel better in a hurry xoxo

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  • lgoldie
    lgoldie Member Posts: 120
    edited March 2014

    I don't know if I will make it through chemo.  I am on day 6 after first A/C.  I am so weak I can barely breathe, honestly.  I am shaky, sick and my heart is beating out of my chest.  Is this really how it is supposed to work.  Please help me


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  • NinaW
    NinaW Member Posts: 110
    edited March 2014

    Hi there, jmg - welcome to March madness! I know you're scared - we all are, but look at it this way: thousands of women have been through what we're about to go through, and there's absolutely no way they're tougher or more capable than we are. You've got this, and we'll be right with you to cheer you up and cheer you on.

    With regard to your nerve problem, have you been assessed by a neurologist? If not, maybe it would be a good idea to make an appointment. You should definitely be monitored for a separate issue like that, because your oncologist needs to focus on kicking your cancer to the curb. If you get in front of a neurologist, he/she might have great suggestions on how to manage symptoms and may even be able to help tailor your treatment so that your side effects are minimized. It couldn't hurt, and it might help, so if you feel up to it, make the call.

    Alli, we need to get the message to your lymph system that you're not planning a secret life as a kangaroo. That pouch of swelling has to get out of town. If you can't make it to get a lymphatic massage, here's a link for you with some help for self-treatment:  Lymph Drainage for the Arm

    I hope everyone has a good day today. I'm going to finish up this stack of paperwork from Sloan Kettering in preparation for my meeting with the oncologist there tomorrow morning. I'll study a little, just in case she decides she won't consider treating me if I can't tell her my left ventricle systolic diameter base off the top of my head :-)

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  • NinaW
    NinaW Member Posts: 110
    edited March 2014

    Oh, {{{{{goldie}}}}} - listen, it can be miserable, and that's just the sad fact. But you absolutely CAN do this. And you need to call your oncologist RIGHT NOW to let him/her know about any symptoms you're experiencing. You might be sent to the nearest emergency room for assessment. GO. NOW. Whatever you've got, they can treat and make better. There's no need to suffer. Please make that call right now and come back here when you can to let us know how it's going.

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  • AKJ
    AKJ Member Posts: 190
    edited March 2014

    yes cancer vixen. Vent all you want. It sounds like you're having a rough go. Thank goodness for the babysitter. Please reach out to other people to help you too. 

    I finally dragged myself into work for a couple of hours yesterday. I was so sick of myself that I just wanted to talk to people. It went ok. People are really supportive and don't seem to mind that I'm setting my own schedule. Going to try to go in again today but I may not make it the whole day. I weighed myself today. I thought I was doing pretty well with keeping up with my food intake but I'm definitely losing a few pounds. 

    Lgoldie! Please call someone! It helps to call and cry! Can you get connected with some support group?

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited March 2014

    oh my VIXEN, I am so sorry! I wish I could be there to take care of you. (()) maybe try some of your favorite popsicles!! I am packing them to take and share for my chemo days because they helped so much(plus I had AC and had to suck on something while the infused me. 

    jmg58, (())it is tough in the beginning but trust me, it gets easier!! I wish you the best and all the support you need to get through this. you are not alone:)

    Jmenchaea, I remember my first infusion 4 years ago a family member left brownies. OMG it was a great thing to have for my first day to have. the other days I had McDonald's. people brought sandwiches. I just made sure I had a bottle of water before hand and a good breakfast. for those of you who will get dry mouth the Biotene gum helps out. I stoped using the wash as much and just always had the gum. (()) hugs to you:)

    I an in Kansas if anyone is close!

    I hope you get some relief so in Alli!!(()) would you like to put everyone's info on your first post or would you like me to just start and just reedit:) I am not for sure of the proper way to do a sticky here but I am willing to try but don't want to step on your toes!!

    Also in my chemo bag I will pack warm socks. soon, if your like me your feet will get really cold. Also having a warming throw helped too. I always got cold on the 4th day(that was my "bad" day with AC so that helped. 

    Hope everyone is doing fantastic today! Good luck to all who have treatment today:)



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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited March 2014

    AKJ, I am so glad you have support and they are helping out. I hope you can make it into day and it goes smoothly for you. 

    I for got one thing that helped me was BOOST energy drinks. my starting chemo packet had coupons in it and those where a huge staple for keeping me strong though out. Maybe try those. they are approved by our MOs. there is ensure drinks but I like the boost of energy from boost. (()) 

    anyone have Facebook? lol

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  • agness
    agness Member Posts: 576
    edited March 2014

    cancervixen - I'm so sorry. Have you reached out to your son's classmates' families to ask for help? Do you have a CaringBridge site set up? Someone i know who's wide had cancer shared this link with me: www.mealtrain.com where you can coordinate meals and care or errands. Caringbridge let's you do that a bit as well. It sounds like you need more supports for yourself and your son.

    Studies have shown that lab animals on restricted calorie diets had even better responses to treatment (killing the malignancy) -- so I suppose you don't have to worry too much about not feeling like eating. Just try to drink lots of water as others have said and get some nutrition in you.

    My naturopath recommended ProGreens if I need to add in a more nutrients via a liquid diet.

    Sending you some love and strength.

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited March 2014

    OH, lgoldie, tomorrow will be a new day. I had the same thing. can you walk on a treadmill? it is because of the chemo and if you could walk about 30 mins and drink about a bottle of water it will work itself out in about a hour(()) it is normal (my first time I thought I was having a heart attack) if you could get up and get moving, do some breathing it will go away. PROMISE:) 

    tell your nurse and they can prescribe you something. it is a normal reaction to AC. I can't remember what the pill was but it helps too. ((())

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  • mom2Bnegativex3
    mom2Bnegativex3 Member Posts: 221
    edited March 2014

    NINA, I love that, MARCH MADNESS:) So true!!

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  • Macintx
    Macintx Member Posts: 118
    edited March 2014

    I second the suggestion for drinking Boost drinks.  A friend of mine who is also a survivor gave me a 12 pack of the chocolate ones before I started chemo and told me to have my husband put a nice chilled one on the nightstand before he leaves in the morning so that I could drink one before I even get out of bed.  She said it helped her get past the yuckiest of days and the key was drinking it before you get up and walk around.  Fortunately I haven't had many stomach issues yet, but I still drank one on the mornings I just wasn't really hungry, and I really think it helped keep my energy up.

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  • jmg58
    jmg58 Member Posts: 185
    edited March 2014

    Oh, thank you for the warm welcome and the advice re the Boost drinks.  I hadn't heard that before!  

    NinaW:  thank you.  I actually went to the big hospital for the express purpose of testing my autonomic nervous system (I think I have something similar to POTs, which they 're aware of but my oncologist is seemingly not worried about (although I am))...but they found the cancer first and blew off the rest of the appointments for biopsies and surgery.  Then I couldn't (and still can't) get into see the expert there up to this point.  What I'm afraid will happen is a racing heart/arrhythmia and fainting, extreme shortness of breath, and bad colon pain which is what happened when I got the flu shot for three months.  I couldn't even go to work.  The oncologist says no, and I hope she's right! 

    Alli, my arm 5 weeks out is still swollen under my armpit where I had lymph nodes removed but it has gone down a little; I hope yours will soon, too.  It is finally down enough to notice it slightly and not feel like I'm holding a small puppy under my arm.  I also had some pain there from the decision, but applied Aquaphor and it has gotten better in the last 4-5 days.  

    I also will be having a PICC line installed the morning of my first chemo rather than a port since I'm having 4 infusions and my doctor said that after the first treatment and shot, I will then be giving myself my own bone shot the day after treatment as well.  Has everyone going this route been able to take care of their own PICC line and shot?  I've never heard of anyone giving themselves their own shot before, but this is from a huge city hospital, so I'm guessing they must do it all the time.

    Cancervixen:  Yes, vent all you want for sure.  This is hard.  And we are here for each other and I can only imagine the extra worry of having a child to worry about.   I am sure I am going to do a lot of crying, too, because I already have...my oncotype score came back a 40!! and they expected me not to have to have chemo at all and then all of a sudden it came back with a big chance of recurrrence. The worst part for me besides the nervous system issues is that I have virtually no support system.  I live with an 82-year-old mother who is an invalid and I take care of HER.  She will go to my sisters for 4 days each time I get a treatment and my boyfriend will fly in for Texas for those 4 days of treatment/shot and two days following.  After that, there is no one, which is why I am so glad to be here.  There's not even anyone to go shopping for me or do any cooking so I am hoping I am not in as bad a shape as I fear!  All of my friends live hours away and have jobs....I can't imagine any of them showing up except for the odd weekend.

    Thanks, ladies.  Sorry for taking up so much of your time---but it is so nice to talk to someone who understands.

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  • Nurselaura
    Nurselaura Member Posts: 68
    edited March 2014

    Morning Ladies, I have a quick question.  Have any of you had the experience of developing a seroma or fluid buildup in your axillary space or mastectomy surgical site? I developed this on Friday and it has gotten worse. I look like I have a new size A boob. After much reasearch regarding this annoying complication and calling the PA to advise I am worried that this may delay the start of my treatment next Wedensday.  PA said to wait and see if it starts to resolve on its own but I do,not think that is the case.  Always something I guess!

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  • CaliKiwi
    CaliKiwi Member Posts: 98
    edited March 2014

    Morning all.

    CancerVixen - please keep venting here. I find it helpful to see what others are experiencing and it will stop me from feeling guilty when I vent.

    Goldie - wish I could give you a big hug. This all feels so very scary, I know.

    Laura - ugh, that doesn't sound good at all. I hope that you can figure something out other than just wait and see.

    And now for my venting.  Made it through the first night. I slept/dozed in the recliner all night. I found it easier sitting up, it helps with the nausea. As soon as I start moving around the nausea is back on me.  My tongue started hurting last night and now is covered in ridges down the side of it.  I also feel just generally ick.   My hands and feet swelled up in the night. The hands are much better with just a bit of puffiness in the fingers, but my feet and ankles look like marshmallows.  I checked in my side effects list and it said to talk to my oncologist within 24 hours if my feet and ankles swell. I have my neulasta shot this afternoon so I'm just going to wait and talk to them about it, then.

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  • jmg58
    jmg58 Member Posts: 185
    edited March 2014

    kiwilady, I'm glad you'll get a chance to see them today so they can advise you about the swelling.  That doesn't sound pleasant at all.  I'm hoping they will be able to maybe change your nausea meds to be able to relieve that for you!?  Wishing you a better evening!

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  • Nurselaura
    Nurselaura Member Posts: 68
    edited March 2014

    I am afraid that this seroma may delay the start of chemo, and I refuse to let that happen! ;(

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  • Stilts
    Stilts Member Posts: 246
    edited March 2014

    Nurse Laura: I also had a resulting seroma after my mastectomy and drains were removed..it was actually drained by the surgeon when she put my port in (although she felt it could easily be drained in the office too)...no problems after that and I started chemo a few days later.

    Just a note for those of you with nausea and/or dehydrated...take care of yourselves !...if one nausea med isn't working for you, let your ONC know and get something else or add on to what you are already getting. After my first AC of 4, they added on more IV nausea meds and I went back into the clinic for IV saline 2 days after the chemo...really helped getting the hydration and perked me up !

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  • NinaW
    NinaW Member Posts: 110
    edited March 2014

    Ugh, Laura, what a pain. Is there any way they can aspirate the seroma for you? Did they pull the drains too quickly or something? 

    I can't see why it would delay chemo, though. I don't remember if you had a port installed or not, but in any event, I imagine they'd just be able to run an IV into your other arm on the non-seroma side and get to the business of poisoning you :-)

    In any event, I hope it resolves all by itself and that this was just a theoretical exercise!

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  • lgoldie
    lgoldie Member Posts: 120
    edited March 2014

    So, I did go to see my Onc.  We had a pep talk and she told me to  take more Xanax.   I have an anxiety disorder and this is sending it to the MOON which makes every other side effect worse.  She was great.  This is the hardest thing I have ever done.  My tumor was so small that I felt fine.  The chemo is the GIANT.  I would love to hear how everyone else handles this.  I am a BORN Again Christian and I need to work on my one day at a time skills and trust.  Anyone else out there in this shape?   Thank you so much for the encouragement

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