April 2013 Chemo Group

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  • LKSHER
    LKSHER Member Posts: 209
    edited April 2013

    Heather and Rosina,

    Thank you for understanding and for sharing and helping. I am the oldest of five children, so I know how busy a mom you are, Rosina.



    Also, thank you to everyone. I agree with Gardengirl that it's so great that everyone is so open and honest.



    My hair is coming out in bigger handfuls now. I had second chemo yesterday. I have A LOT of hair, though, so I may or may not still have a few days before one will be able to see any scalp. We will see.



    I hope everyone enjoys their weekend!

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  • anne11595
    anne11595 Member Posts: 101
    edited April 2013

    I quess im lucky not to have young children at home! But my heart goes out to everyone that does. But it is a family cancer not just us. My kids are all grown and have there lifes to live. But they dont live close by. Two are out of state with little ones so it hard on them because they want to help. I stay at my one daughter after my chemo so she can drive me to get my shot the next day because im two and half hours from my hospital of choice.So my husband can go home to work after my chemo. So we all have a lot to deal with. Some more then others. But I wish I could do more to help but that is why we are here. To listen and just being here helps everyone! The cloud that we have over our head will go away one day and we can say we did it togeather! Take care to all you beautiful lady!!!

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  • monkeymom
    monkeymom Member Posts: 50
    edited April 2013

    Hi everyone!

    I found this board this week and have spend the past few nights reading all the posts. Lots of great information!! I had round #1 of TCH on April 10th and have round #2 next wednesday (may 1st). Today is day 16 for me and after having NO hair loss at all, big handfulls came out in the shower tonight. I knew it was inevitable but still feels weird. I'm ok with not having hair- I'm not ok with looking "sick", especially since I feel good right now. 

    Round #1 I had very few SEs (just a little constipation and fatigue). I tried to stay active because I have a 1 year old son and 3 year old daughter. It upsets my 3 year old when I'm in bed- I think it scares her more than anything. 

    I didn't have the Neulasta shot the first round. One week later they did my blood counts and they were very low. The nurse told me to stay away from all germs- I had to laugh because I have 2 small kids! I'm guessing they will automatically give me the shot for round two...

    I'm really glad to have found this thread - I feel like I already know some of you from having read all your experiences over the past month!

    Hope everyone has a good weekend and is getting rest and taking care of themselves!

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Jen987 buzzing hair to a short length sounds like a great idea. Down to the scalp ouch is. We need to remember we ladies have " virgin scalps". Our scalps are very tender and vulnerable to the elements. I've read that even after the initial buzz down, that stubble falls out? I am having a "shave my head party" it will be day 17 after 1st chemo. At first a lot of friends and funny my dad! We're trying to convince me to wait...

    I swear you get the notion to do something and everyone gets inside your head and messes up your plans! Well I went online and found a chart showing the likely good of hair loss on chemo. Taxotere and Cytoxan were both on the "list" I emailed it to everyone on my contact list. Then I got replies like, you know what you're doing. You're so brave, you're so strong. Hey, this is the side effect of the chemo, it's NOT the cancer making my hair fall out.

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Added picture of my shorter hair

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Lol it's upside down?

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  • Speedy4
    Speedy4 Member Posts: 136
    edited April 2013

    Had second treatment yesterday. Felt a little tightening in my chest during the latter part of the Taxotere infusion. Hadn't experienced that with the first one? The nurse kept a close eye on me and the MO on call listened to my lungs. All fine I guess so they continued. Drank lots of water and am forcing myself to do it again today and going forward. My liver enzymes were up according to my blood work from Tuesday this week so maybe I hadn't been drinking enough water before that?



    When I got home my BF shaved my head again. SE had buzzed it to a 3 last week but it was itchy and still coming out so I had her buzz it all the way down. I feel so much better! Weird what you can get used to really!? I even went without anything on my head the rest of the night (granted I didn't go out anywhere and it was just me and my fiancé home last night). My scalp is pretty dry so he rubbed CeraVe lotion over the dry spots. Virgin scalps is right!



    Gardengirl~you made me lol with your streaming thoughts of hair in between all the other every day thoughts. It is like that with all the anticipation of when the hair is going to start falling out!

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  • CarolA5587
    CarolA5587 Member Posts: 26
    edited April 2013

    A good day to you, ladies!

    Patty, the infection in the vein almost looks like a bruise except it is redder and itchy. Mine is a little further down the hand from where the IV was inserted. I knew something wasn't quite right with it from the start. I had a little burning. But since that was my first time for chemo I couldn't say stop and let's do something else. Besides that, I really didn't want to delay chemo to stop and put a port in. This was the same vein that was used for surgery. Could be there was a little something left from that. This is day 4 of low grade fever. It's been in the 99's almost consistently. It's pushed the magic 100.5 a couple of times but never quite got there. I feel like it's stealing those good days that I'm supposed to have before I do this again on the 10th. Well, waaaaaaa.

    My oncologist says that people say that the soul is in the heart. He says, no. When people have their white blood cells go, it is as though they have lost their souls. I'm feeling a little down today.

    Gardengirl, isn't it funny how you have to convince everyone around you not to be in denial about YOUR hair

    loss. I've had some of those conversations too! I went to a really short haircut right before the first chemo. Don't know why I didn't do that a long time ago. I have had a lot of compliments on it. Of course the smartass who is ever lurking wants to add something like look fast before this one is gone. I've bought two wigs but I'm not happy with the fit of either one. I don't know if it's because they're not good, or because I'm too critical. My husband's comparison to Tina Turner probably didn't help. :)

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Hair, I had a melt down today. My husband and I were enjoying the day driving back from in laws. We were talking I need to get my concealed weapon permit renewed, requires a photo. Ok, so do it this week before I shave right? Then a few minutes later, with a LUMP in my throat, " I have to renew my drives license too, what am I going to do?" I totally started crying, then my husband said, " can't you get a wig?" Oh, duh! Calm came over me, I am going to get a wig. However at that moment it never dawned on me! All I could think was I will be bald! For my drivers license!

    I am going to have my step daughter shave my head with a 2. I want to be gentle on my ol noggin. I've been buying a few hats and scarves. Totally going to need You Tube

    To learn scarf tying and placement. I got two adorable hats today, cheap! $1.39 a piece at Pat Catans craft store.



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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited April 2013

    Thank you for sharing Carol! Now I know one more thing to look for.

    I hope you get to feel a better for when you are ready to go again.



    I had spoken to a survivor on the phone and she kept mentioning "when the pity party comes go with it"...she must have repeated that 3 different times during our conversation. I finally wrote it down (as I was taking notes) and realized I better be all set for a pity party! (Even though I don't think I am "that type"-I'm guessing this is soooo something that will bring me there!). So when I got off the phone I looked up the "rules" for a pity party (and yes, I found some!) and made a poster "Pity party in progress- go away" and then an "all better" poster. Then I sat down and explained the situation to my hubby and kids so they can know what they might expect at some point. (Better to hear the description from a happy mom, then from a desperate hubby!). I also heard about the "steroid rage" and made up a poster that said "RUN". Lol, told my kids if they see that they BETTER stay away! Lol



    Also went and got a shorter haircut, not loving it, but not hating it! And I had picked up a wig from the Internet (had gone to a wig store but $450 for something I didn't love!-insurance not covering)...so I am ready for the hair loss (as ready as one can be?). Garden girl, you are right, everyone keeps telling me it doesn't happen to everyone. I'm glad they are in the denial for me! Perhaps they should have placed a bet with me! Then I would have money to go out and buy a REAL hair wig! Lol



    Anyhow, I share these stories because I know what we are all doing to prepare ourselves, and I don't think I've seen pity party prep (say that 10 times fast!) or hormonal/steroid rage listed!

    Wishing you all the best!

    Pat

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  • Rosina0015
    Rosina0015 Member Posts: 49
    edited April 2013

    Good evening ladies,



    So I've been doing a surprise room makeover for our 16 yr old son all day - painting and tearing up floor. Had to run to pick up pizza for dinner and in my haste I left without boobs or my wig. I realized this as I'm driving and actually considered turning around. But I thought am I crazy? I kept my head high smiled and I felt normal. No worry about is my wig on straight or are fake boobies showing?? This was a good moment for me and wanted to share.



    Pat- You had me cracking up with the "steroid rage". I read your post to my mom - she is a BC survivor and finished her treatments last year, so she could relate and appreciate how funny it really was.

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  • indenial
    indenial Member Posts: 504
    edited April 2013

    Rosina, you rock!!! :) LOVE the confidence! 

    A little girl in a store today pointed to my headscarf & called it a "Power Hat." Totally made my day, reminds me of a super hero. I will think of that every morning when I tie my scarves!

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  • Rosina0015
    Rosina0015 Member Posts: 49
    edited April 2013

    Thanks indenial. I didn't think I had any til then. :)



    I love that - "power hat" - its perfect!

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  • Pattysmiles
    Pattysmiles Member Posts: 954
    edited April 2013

    Rosina, that was awesome!

    So I guess based on your moms reaction the steroid rage is real! I better make an extra sign for the front door! These past few months when I PMS I am just awful...cry for "dumb" reasons, get angrier than a "normal person" would etc....I can't picture that on a bigger scale! My poor family!



    Indenial, I like your power hat....now I know what I will be thinking when I get there, and if I choose to go without I will think of Rosina!

    Thanks Ladies!

    Pat

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Pat I too enjoyed the pity party, warning signs, and the steroid rage!

    Rosina! Congrats! You rock it girl! Unfortunately seeing women with heads shaved, scarves etc. is becoming more common. At the same time it s becoming more socially acceptable. People are more compassionate and educated these days. You may run into an ignorant one somewhere sometime but we will hold our heads high! God forbid an idiot crosses our path on a " roid rage" day! lol

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  • Schoenme
    Schoenme Member Posts: 4
    edited April 2013

    Good morning Ladies, 

    I've been thinking about you all so much lately.  I fell like my life is now consumed with meds, surgery, treatments, chemo etc.  I feel like my boobs are the top of everyone's conversation and I really hate that.  I'm starting to feel like everyone is looking at me like I'm a sick person when I don't feel or look sick yet in the slightest.  Don't gt me wrong, my family has been great but its hard to go from being self sufficient to the person everyone wants to assist.  

    OK, enough of that :)  My first chemo appt is tomorrow and quite honestly I'm terrified.  Give me all your best advice please for making the day easier.  Just the apprehension is killing me.  I'm sure once I get through one and know the unexpected I won't be so fearful.  I have my nausea meds from the doctor; I'm supposed to put the patch on in the morning but what about the others?  Do you take them in the morning as well to prevent the nausea or wait until you need them?  I bought some ginger capsules as well and plan on drinking lots of water.  Were you cold in the chemo room or does it make you feel hot and flushed?  

    All of you have been a wealth of information and I feel so blessed that you are sharing your experiences.  Best to all of you!!  If you happen to be having a bad day please know that you are being thought of.

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  • Jen987
    Jen987 Member Posts: 145
    edited April 2013

    Schoenme: I was told the anti nausea medicine they give you through IV lasts for a couple days so I didn't take any pills until day 3. I did get a little chilled my first infusion so if you want bring a blanket you could although some chemo rooms have some for you to use. My second infusion I got flushed/warm during the steroid push. So you never know. Drink lots of water. I sucked on lemon drop candies to avoid mouth sores and so far I haven't had any. I've also heard chewing on ice chips works if you are getting Taxotere. I brought magazines and my Kindle Fire to keep me occupied. It won't be as bad as you think. I'll be thinking about you tomorrow.

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  • CarolA5587
    CarolA5587 Member Posts: 26
    edited April 2013

    Schoenme: I worried about my first time to the chemo bar, too. In my case, needless. The process itself was fairly simple. It takes some time so come prepared to entertain yourself for a while. I took steroids the day before, the dau of, and the day after. I started taking Claritin and Colace the day before. I wanted to make very sure I didn't become constipated with this. I also took a B6 starting the day of -dr suggested that to help combat body aches. The Claritin and steroids were also for that. Must have worked. I took a big glass of crushed ice. I'll take even more next time. I think it helps protect your mouth and taste buds. Nurse also suggested buying Vitamin E gel caps. You can open it up and spread it on your gums to fight soreness. I haven't tried it yet but I plan to.

    Drink lots and lots of fluids all the way through this process. You can't count anything as fluid if it has caffeine. Alas, this southern girl is not getting that sweet ice tea. LOL. I bought Ginger tea because it's supposed to be good for the stomach. Stomach rejected that idea. (Actually it was the taste buds who wanted to know what I was thinking. )

    Rosina, what can we say? You go, girl. I'm kind of ready for the hair to go so I can move on and quit worrying about it!

    I love the idea about the signs.

    Happy Sunday!

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  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    my next treatment # 2 is this Friday.....I stocked up on ginger candy for the nausea and the BIG BUZZ will be Tomorrow night....gonna do it at work since they are my second family and record it...

    I too chewed ice for the T infusion and where I'm getting treatments, MO's office, offers warm blankets. Planning on either making cookies or home made ice cream for the nurses..they were so sweet and understand at my 1st visit. They were always there with warm blankets and MORE ice if I need it....

    Ok...maybe I'm just too out there but ....doing research on getting a HUGE Hena tattoo on my nogin once it's buzzed and came across this site.....it has stencils and other cool stuff...even shirts with matching head wraps and the prices didn't see to bad ...check out the link

    even has books about talking to kids about Chemo....

    http://www.chemochicks.com/home.htm

    Rainy here today...gonna do some house cleaning...well STRAIGHTING actually.....Hope everyone has a peaceful Sunday....

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  • 6cats
    6cats Member Posts: 327
    edited April 2013

    First dd AC on April 25 followed by a Newlasta shot on Day 1. So far, moderate nausea (no vomiting). My biggest issue is the killer headache I've had... waking me at 3am this morning. Any suggestions??

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  • Jen987
    Jen987 Member Posts: 145
    edited April 2013

    6cats: Not to scare you but I ended up in the E.R. twice after my first round with a killer headache. I was throwing up for days and almost crying because it hurt so bad. My MO thought maybe it was the Neulasta injection causing all the pain so this round I didn't automatically get the shot. My second infusion was Monday and I feel ok. I am going on Monday for bloodwork and I hope my counts are up so I don't have to have the injection. Did you take Claritin? If it gets unbearable call your MO so they can call in a pain prescription for you. Don't suffer. Also stay well hydrated.

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Ouchie, my scalp on top of my head hurts. You know the feeling when you've had a pony tail all day, too tight. You take it out and it feels numb?burning?

    Is it the "start"?

    It must be, my scalp has never felt this way, weird.

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  • Jen987
    Jen987 Member Posts: 145
    edited April 2013

    Hate to tell you Gardengirl but that's what mine felt like before my hair started shedding. Right on schedule according to everyone else. Once I buzzed it down it felt so much better though.

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  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    don't know if it'll help, but I went ahead and got some Nivea Extended Moisture body creme with Provitamin B5 in preps for the BIG BUZZ tomorrow

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  • Gardengirl33
    Gardengirl33 Member Posts: 65
    edited April 2013

    Tuesday will be day 14.... Yep, it's here. Friday is the scheduled buzz party.

    I found out I can renew my drivers license a month early. Going this Thursday! With my own hair!

    I have an envelope from when I was a baby. It contains a lock of my hair from my first cut. I'm going to save a lock now and put it away. Weird?

    Henna tattoo on scalp! I saw that, my brother actually asked me too if I would do that.

    .? It is cool, not sure I want to draw more attention to myself.



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  • Virginger
    Virginger Member Posts: 111
    edited April 2013

    TOTALLY understand the...but If I'm NOT in the mood throw a HAT on and nobody knows ;-)

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  • indenial
    indenial Member Posts: 504
    edited April 2013

    I got a nice big floppy sun hat since I've been burning easily... went for a walk & it kept blowing off! So later today I went outside bald. My neighbors were out there but busy so hopefully didn't notice. Trying to ease into being comfortable walking around like this so I'm not freaked out if my hat blows off. Plus I'm already getting annoyed with wearing things on my head & it's getting warmer now... maybe it will be easier when/if the rest of the stubble falls out or grows in or something to make it look more even! I look like I have a skin disease, dark spots where the stubble is hanging on & totally bald patches and sparse areas... ugh. And it's still pretty painful!!!

    Also, my period started today... was hoping I'd at least get a few months off! :( Anyone else? I'm wondering if my cycles will continue all through chemo. Going for round 2 on Wednesday. I feel much more prepared this time but also anxious that it will hit me much harder. At least I will be halfway through!

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  • debbiej
    debbiej Member Posts: 72
    edited April 2013

    Hi all, I started FAC chemo on April 24.  The first two days went pretty well and has been going downhill since then.  I did insist on the Amend so I have not thrown-up yet, but I just feel lousy today, day 4.  I feel like my head is burning up, can't keep anything on it for long.  Also my legs, knees, and stomach hurt most of the time.  I think the legs, restless, and the knees are still the affects of the Taxol I just finished.  Guess this isn't my chemo so maybe I shouldn't have posted but it feels totally different than Taxol.  Way, Way, worse to me.  I just hope to get through it.  Anybody doing FAC and know of something to relieve burning head and stomach pains?  I just feel lousy!  I want to quit it already!

    Trying to keep the faith!   Love you all, Debbie

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  • Koru_
    Koru_ Member Posts: 15
    edited April 2013

    Hello Ladies.....

    I just found this chemo board; I was on the March Surgery Board.

    I started my first round of Taxotere, Carboplatin and Herceptin on 4/18 with a Neulasta shot on 4/19.  The Neulasta shot hit me super hard; I couldn't even sit up due to the pain in my pelvis and low back and I was following the recommended regimen of ibuprofen rotated with acetominaphin every 4 hours in addition to the Clairitin.  I experienced abdominal cramping and diarrhea along with some of the most severe mouth sores my MO has seen in a long time.  

    I have had compazine and bentyl prescribed to help settle down all things digestive and received a bottle of MuGard to help with the mouth sores.  (I was also prescribed some Magic Mouthwash, but my stomach couldn't even handle it being in my mouth.)  The MuGard has been a godsend for me and I would highly recommend it.  They've already told me that next time I'll be sucking on ice chips.

    I wanted to be the one to decide when my hair was going instead of the chemo drugs, so I planned a spa day head shave with family and friends and it was covered in the local newspaper: http://www.tampabay.com/features/humaninterest/like-samson-in-reverse-she-gets-power-from-shearing-her-locks/2115205#comments

    I did some extensive youtube research and Survivor Kristy Greenwood has an AWESOME series of six videos posted.  You can find her first video here:  http://www.youtube.com/watch?v=UC_mXSVU1nc  She also has a facebook page here:  http://www.facebook.com/pages/Mission-Mine/132753804315.  I learned how to tie a head scarf from watching her videos and people stop me every time I am out and about with a head scarf on and compliment me on it or ask me how I learned to tie it.  You'll enjoy the videos  they are so well done and her heart is just amazing.  They are a gift to all of us that will be going through this process of losing our hair.

    @Gardengirl:  I saved ALL my hair.  It is in a pink bottle that is in the shape of a bubble with a fleur de lis stopper on top!  I encourage you to keep yours, too!  I also have a girlfriend that has offered to have henna art done on my head.  I'm thinking once I'm past the halfway point (sometime after round 3 for me) I will have a henna artist come to my home and invite my friends over and we'll make another party out of it.  The artist has said she can do smaller designs that would be similar to mine on my friends' hands or feet so that they can join in the fun and show their solidarity!

    @Rosina:  YOU ROCK!!! 

    @Virginger:  Wishing you all the best for your BIG BUZZ tomorrow!!!

    @Schoenme:  I was given 50mg of benadryl as a pre-med when I arrived.  My first trip was on a Thursday and lasted about 5+ hours - most of it was spent hanging out with the Sandman in Dreamland. :-)  I went to dinner and played trivia with the family that night; went to work on Friday and got my Neulasta shot Friday afternoon.  My SE's didn't really start rolling in until about 3 p.m. on Saturday afternoon.  Yep that was when the storm hit.  Wishing you all the best - EVERYONE is different (as you can tell) and I think it takes a first experience to establish a baseline for how your biochemistry is going to handle the chemotherapy.  My MO said they would be tweaking things for me for Round 2.  (Hallelujah!)  I also took a crocheted blankie my grandmother made for me when I was just 8 years old and I did use it.  I also wore a goddess necklace my mother gave me. My sister and another very dear sisterfriend went with me and sat through the entire time with me!  The VERY BEST of luck to you as you begin tomorrow!!!!

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  • Koru_
    Koru_ Member Posts: 15
    edited April 2013

    @debbiej:  You hang in there, Sister!  You CAN do this.  My MO and nurses have ALL told me to call anytime about anything.  I'm not familiar with FAC, but you might want to call them to see if there is anything you can do or they can prescribe to help mitigate your SE's.

    If it helps at all, visualize any or all of us there with you, blowing cool artic air across the top of your head and as you inhale it travels down throughout your body relaxing bones, muscles and cells as the cloud of cool air drifts down, down, down around you.  Releasing tension and stress and drawing out any toxicity that is not healing to your body.

    Keep the Faith!  YOU CAN DO THIS!!!

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