April 2013 Chemo Group

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  • PamelaKay
    PamelaKay Member Posts: 107
    edited April 2013

    Just making sure you all know about EMLA cream. This is a lidocane cream (numbing) that you can put on your port before the chemo. I used it and didn't feel a thing when they accessed my port.

    I put a teaspoon-sized dolop on the port about an hour before chemo, then covered it up with a piece of plastic wrap sealed with tape (to keep it from getting all over). 

    I think someone else on this list also mentioned a lidocane spray that was used for their IV that the nurse sprayed on just before insertion. 

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  • anne11595
    anne11595 Member Posts: 101
    edited April 2013

    Ok ladies! So i had my first chemo today and im still feeling alot of nausea! Was hoping that anyone might have an suggestions for me to help!I have taken ondansetron and prochlorperazine which has not helped, i did call my doctor and he called me in another script for ativan but, in the mean if you know of any other solutions i would love some suggestions!! Thank you!!

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Kirklandgal, thanks for the tips.

    My nephew is a pretty clever boy. I have no doubt he will understand. Just need some tips how to explain. Tanks the book, nowhere hair sounds good. I also heard there is a book called? A shark with cancer?

    I'll google both.

    Irene, I found the day of chemo treatment was the easiest. It was the days to follow.. Just extremely fatigued. Go buy yourself Cleratin, if you're getting the Neulasta shot. It worked fantastic for me. Good luck,



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  • daffyc
    daffyc Member Posts: 50
    edited April 2013

    Anne, are you drinking lots of water and have you ate any mild foods?  I find sometimes that having a little something in my stomach and being hydrated helps.  Hope you are feeling better very soon!

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  • daffyc
    daffyc Member Posts: 50
    edited April 2013

    Any suggestions or tips from those that have buzzed their hair?  I'm having a very small amount of hair loss today.  No clumps.  I'm day 15 and will do my 2nd infusion tomorrow.  I'm guessing by the weekend it will be buzz time.

    I've cut inches off a few weeks ago so it's currently about chin length.  Should I scissor cut and then use clippers?  Is it better to do this outside versus having hair all over the bathroom?  

    My family and close friends are all too far, but I'm thinking of making it fun for my boys if they want to participate (not sure if they will).  I figure we can mohawk it in the process.  They will get a kick out of that.

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  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Daffy,

    That is what we did. Used scissors as short as possible then buzzed it. Outside would be ideal, it is a mess. I took a picture for posterity! I included my 16 year old daughter who was terrified, but she did the back because I could not see! Good luck, and as long as they see you take it in stride, they will too! =)

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  • daffyc
    daffyc Member Posts: 50
    edited April 2013

    Gardengirl, we were pretty honest with our 3 sons, but tried to keep it simple and age appropriate for each.  They are 8, 12, and 16.  Go to Amazon and look up books for cancer.  They are some really good ones depending on age.  I can't remember what specifically for a 6 yo.  

    I know some people don't want to use the C word with kids, so maybe check with your nephews parent(s) to make sure it's ok with what you tell him.  I think the basics....cancer/sick, chemo/medicine will help you get better, but you will lose your hair and say "isn't that crazy":)  

    Good luck!!!

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  • daffyc
    daffyc Member Posts: 50
    edited April 2013

    Heather, I'm hoping that if my kids are involved it will help me keep it together.  I'm a little afraid that I might get teary and that will effect them.  My 8 yo is very concerned about my impending hair loss.  

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  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Anne, not sure if you took them meds BEFORE you got the treatment, but that made all the difference for me. I did not do so the first time, and was sick for days. This 2nd round, I took them in the morning several hours before and kept on them regularly. Try some bubbly fluid like 7-up and crackers if you can tolerate. If the meds just do not work, don't hesitate to call your Dr. for something more/stronger!

                                                                                                Heather

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  • heather214
    heather214 Member Posts: 142
    edited April 2013

    Daffy, I cried before (my daughter is older so I am a little more open with her) and she did too. It is OK to tell them it makes you sad (or even cry) but reassure them that being bald doesn't change who you are and that it will grow back after treatment. I do think it makes it harder to look at you and not see "sick" so personally I try to keep my head covered with a wrap/hat or my wig. I let her touch it and run her fingers through it, she loved that. This unfortunately is in my opinion a "family disease" in that it affects everyone, and kids especially are terrified for us. That is the worst. I try to hold my breakdowns for when I am alone. (((((HUGS))))). Have your son draw a picture of you without your hair and then ask him to draw what you will look like when it comes back, and put it on the fridge. I think just remembering this is temporary helps.

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  • goingforward99
    goingforward99 Member Posts: 25
    edited April 2013

    Heather, Thanks! :)

    I got my port in, hubby brought me home, I had a snack, took a nap and by the time I woke up he had dinner ready! All in all it went very well.

    I can only hope tomorrow's first chemo goes as well!

    Thanks, Everyone for your support!

    Irene

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  • LeslieFay
    LeslieFay Member Posts: 10
    edited April 2013

    Next week I have my first Chemo & Radiation MD visits. New to the forum so I joined the April group.

    Pretty wigged out. I hope I have a "chemo class" b/c the previous discussions about OTC meds for side effects have been confusing to me. Which OTC meds are for which side effect?

    Kobrien's feelings really echo my own.



    I feel like I'm parachuting into a war zone without have had any training!

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  • LeslieFay
    LeslieFay Member Posts: 10
    edited April 2013

    Good luck Irene!

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  • Schoenme
    Schoenme Member Posts: 4
    edited April 2013

    Hi.  I guess I get to sneak into the April group.  I have my port placed Friday along with a node biopsy and start chemo Monday.  The last two weeks has been a whirlwind of doctors appts.  I'm not sure if I'm coming or going.  I feel fine one minute and weepy the next.  Depending on my biopsy my Dr wants to do either TAC or FEC??  I think I have that right :)  I'm a little perplexed and wish they offered a chemo class.  I have so many prescriptions and feel like I don't know what to take when.  I plan on emailing the nurse practitioner tomorrow to get that straightened out.  I'm sure once I have the first treatment it will become clear but I hate the feeling of being all over the place. I'm the Mom, I supposed to have my crap together!!  I trying to wade through posts but it all seems like so much.  Thank you for letting me vent for a bit.  Best to all of you!!

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  • indenial
    indenial Member Posts: 504
    edited April 2013

    Gardengirl, check out the website http://www.someoneiloveissick.com/talking-to-your-children-about-cancer/explaining-cancer-to-kids/ There is also a book by the same title, though it's very basic, better for younger kids, and she wrote an adult book about helping kids cope called something like Helping Kids Through a Parent's Serious Illness. I find her ideas & suggestions to be very on-target with other research I've done and consistent with what some great therapists recommend. I strongly believe in giving kids as much factual information as they want and using real terminology. I found that the things my son most needed to hear were that cancer is not contagious and that the doctors and medicines would work hard to help my body fight it... He also really benefitted from simplified descriptions of each procedure/treatment I've had as well as pictures (mastectomy pictures, post-surgery recovery pics, pictures of bald women, people getting IV's, etc.) to take the mystery out of it. I involve him as much as I can, too -- he visited me in the hospital several times, he comes to some of my doctor's appointments, he watches me have blood drawn, he helped me clipper my hair... 

    LeslieFay & Schoenme, I hope you can get all your questions answered! I think it sounds more complicated than it is. For me, the only thing I had to take was the steroid the day before, day of, and day after. Everything else is just based on whatever side effects you have, which is different for everyone. They will prescribe nausea meds and you can write on the bottle what they are for so you don't get confused. You can also get meds for sleep &/or anxiety if you want. For constipation you can take colace, miralax, senakot, etc. For diarrhea, Immodium. For acid issues, Pecid or Zantac. Some of us take glutamine to ward off neuropathy as well as mucositis (inflammation/ulcers in mouth & digestive tract). Maybe you can make yourself a little chart? I was tempted to stock up on every med I might need but there is a 24-hour pharmacy less than 10mins down the road. You probably won't need half of those anyway. First round I took the steroids, preventative colace, glutamine, and a couple of nausea pills. That's it. Next round I will add in something for acid/heartburn. You'll figure it out as you go along and hopefully won't have too many side effects! 

    I'm on day 15 now and my head hair (umm... stubble I mean!) is finally starting to fall out. TMI but day 13 I started losing lots of pubic hair, yuck! Eyelashes have been slowly falling out since chemo day but I still have a lot left. Nose hairs are gone. All other hair... you know, the hair I'd actually WANT to get rid of.. is hanging on! I also find I have been super irritable, PMS-like, the last 2-3 days. Period isn't due for another week or so and I'm curious to see if it will arrive as scheduled (kind of hope it doesn't because I'm not sure if I can handle menstrual cramps along with chemo round 2!!) Feels like something is up hormonally... the irritability and other stuff is just not quite normal for me. 

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  • PamelaKay
    PamelaKay Member Posts: 107
    edited April 2013

    Anne, hope you are feeling better. I agree with Daffyc about the food and hydration. Getting the right amount of food was key for me (not too much or too little)

    If that hasn't helped, here are a couple of things you can try:

    Ginger (candy, in tea, fresh blended in a smoothie) helps with nausea. There is also an acupressure point on the wrists you can use. You can buy Sea-bands which are wrist bands that have small bumps you can align with the pressure point. I think most drug stores have them these days.  Or, in a pinch, just put pressure on yourself or having someone else hold the poiint. You can find the point by putting two fingers on the  inside of you wrist ligned up below where the bend is, then press just below that in the middle of your wrist. (you can probably find more info and a better description online).

    Another prescription you can ask for is dexamethazone. It is a steroid, but it is for nausea also. My MO had me taking it for the three days after chemo to prevent nausea (it worked for me). 

    Did you get premeds prior to your infusion? Those are supposed to last for 3 days (I know they don't work for some people). If for some reason you didn't, you should find out why. The premeds took an hour and a half before the actual chemo drugs.

    Hope you feel better soon, Anne.

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  • Irene1975
    Irene1975 Member Posts: 19
    edited April 2013

    I started my steroids today as chemo starts tomorrow. Has anyone felt like they were having hot flashes with them?

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  • CarolA5587
    CarolA5587 Member Posts: 26
    edited April 2013

    Well, this is day 8 after the first chemo. I woke up this morning and felt really good. All right, I thought. I can do this: no problem. I have been at work all week but really felt good this morning. Then about mid morning that wall jumped up again. I was already scheduled to have my white blood cell count taken today. And sure, enough it's dropped way low. Running a low grade fever but not at panic level. So although I wasn't given the Neulasta shot this first go round, it's coming for the next ones. Looks like I also have an infection in the vein where the treatment was given. Happy, happy, happy. On antibiotics for that. Three more rounds to go. We can do this!

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited April 2013

    Kirkland & Allie:  I was told to ice nails w/bags of frozen peas.  You can just dig your fingers in.  Didn't do the toes.  Also told to paint nails black or navy the day before, then switch to Sally Hansen Clear for the next 7 days.  It'a royal pain to get that black color off.

    I'm joining this elite group, but had planned to read everything first.  Just couldn't resist jumping in with the icing issues.  BMX for DCIS Feb 2011 - clean margins & 2 SNB both clear on both sides.  Reconstruction w/gummies Sept 2011.  Recurrance to chest wall IDC & mets to lymph nodes discovered at two year check March 2013.  Port installed 4/16.  First chemo was 4/17 - Herceptin, Taxotere, Chemoplatin & Perjeta - 8 hours!  Neulasta 22 hours later.  Multiple tumors too big for more surgery that have appeared since an MRI 6 mos ago, but if the chemo can shrink them I'm scheduled for 7-9 chemo rounds every 3 weeks.  Then surgery.  Then rads.

    Sunday - I've marked your post & will get back to you.  I too am retired and live alone.  I too am angry, and really don't want anyone around.  WTH - I already paid two years ago.  Terriffic bone pain even w/the Clararitin & Aleve.  Constipation until day 5, now diarrhea for 3 days.  Trying to ignore the hair issue, but I certainly appreciate all your great links & articles.  I really need to do something this week.

    Thanks to all of you for sharing your thoughts & feelings.  I've been on these boards for two years & met some wonderful women.  Now I get to go a new direction & meet more.

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  • LeslieFay
    LeslieFay Member Posts: 10
    edited April 2013

    Indenial, thanks for the tips.

    This sounds so much like driving a steep mountain road-- the unknown and the errors the first time (too fast on that curve, not enough acceleration on the next hill) But after a few times you figure it out.

    Stil, sounds just miserable.

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  • anne11595
    anne11595 Member Posts: 101
    edited April 2013

    Pamela and Hether,thank you.they had me take the Emend just before they started the chemo plus they did give me the steroids before to. But i will take the emend at least a hour before next time. I did have all the meds,Compazine Zofran,Decadron and now ativan.Had to make two calls in to doc but he got right back to me.Than i had heart burn like i never had before.To zantac.Did throw up a few times.Took it all but by 10:15 2more ativa and fell asleep for the night! Feel a lot better to day,so far.But have togo for my neulasta shot today.did take allergy meds today.so thanks for all ofyour advice .i thought i could remember everything but when you are hurting like i was anut case! But today is a new day please.

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  • Jen987
    Jen987 Member Posts: 145
    edited April 2013

    Hello ladies. Day 4 of my 2nd chemo treatment and so far so good. Just tired. Hoping I don't crash and burn like last time and end up in the E.R. two times. I am not getting the Neulasta shot automatically this time. We are waiting until Monday to see how my counts are. My oncologist thought maybe that was the cause of all my head pain. If I do need a wbc boost she wants to give me Neupogen instead.



    Welcome all newbies. It's not as bad as you imagine. We can do this. It may not be fun but it's doable.

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  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    well the hair is really starting to come out....but got this GREAT new monogram hat I rocked at work yesterday~ Gal @ work suggested we tape 'the shave'..not 100% sure about that..but might so my dad can see......hum...

    energy levels are fine....next treatment week from today.....<sigh>

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  • Speedy4
    Speedy4 Member Posts: 136
    edited April 2013

    I bought two hats that have hair attached to them. The shade is a little darker than my real hair but it looks pretty darn good. The hats were totally plain so I brought them to an embroidery kiosk in the mall and had them embroidered. They look great! I've been wearing them to school all week and the kids don't know a thing. In fact I've had many compliments on how good my hair looks.

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  • indenial
    indenial Member Posts: 504
    edited April 2013

    Anne, it doesn't sound like you got IV premeds?? I had to take steriods orally beforehand but they also gave me more steroids in my IV, plus IV Pepcid and IV Aloxi and IV Benadryl. This is all in addition to taking pills. Maybe your MO can consider giving you some of these in your IV to stave off the nausea, heartburn, etc. I thought that was standard practice. So sorry you've been so sick!

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  • paulachiz
    paulachiz Member Posts: 14
    edited April 2013

    Hi Everyone,

    I am new to this board and thought I would let you know that I had my first chemo Monday April 22, 13. AC/T dose dense first AC then followed by T.  I am so glad to see such support when going through times like this.  I havent had time to read all the posts yet but I will get to them, nor have i completed my signature etc.  everything is just overwhelming and I am just happy that I have fellow sisters to talk to.  You all seem to be great support for one another.

    Thanks for being here, I am now going to try to read up on all the posts.

    ((((((big hugs)))))) to you all.

    Paula

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  • goingforward99
    goingforward99 Member Posts: 25
    edited April 2013

    I am home from my first chemo. All went well. Now I just have to wait and see what side effects kick in! Irene

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  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    Welcome Paula..lots to read and TONS of support Laughing

    and Irene...drink LOTS of Water~ glad it went well....

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  • Rosina0015
    Rosina0015 Member Posts: 49
    edited April 2013

    Hello April Ladies!



    I'm new here and only wish I had found you before my first chemo which was 4/3/13. I had my second treatment 4/16/13 and my next is scheduled for the 30th. OH BOY - it's been such a roller coaster. Day 4 and 5 seem to be the yucky days for me. But today I feel more "notmal" so I'm taking our 4 yr old out for some outdoor fun.



    I am going to make it a pooint to stay hydrated (I'm really bad at it since chemo started). And started taking Zantac for this lovely acid reflux. I have purchased a lovely wig that I wear out. DH brought me home a hot pink turban - he's sweet. And he lovingly refers to me as "Eagle" now.



    I'm thankful for finding this group. Just what the doctor ordered!!

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  • KimHam
    KimHam Member Posts: 6
    edited April 2013

    Hello My April Pink Sisters,

    If it helps anyone, I'm on day 9 from the 1st chemo and finally feel good!  Didn't have to take a nausea pill last night.  I think that helped alot with waking up feeling good. 

    Is there anyone out there that is NOT doing the preemptive shave of the head?  I simply cut mine short and plan on letting it go as it goes.  Wondering if I'll get two to three weeks before its all gone.

    Have another question for you too.  Good friend that wants to "help" is suggesting I get some CoQ10.  I won't really do anything without asking the onco first, but curious if anyone has any experience with this type of vitamin. 

    Happy thoughts to everyone!

    Kim

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