April/May 2012 Chemo hang out

C-squared

Petagae- you may want to pose your LE question to the LE board:  http://community.breastcancer.org/forum/64    Not that there aren't a lot of intelligent women here but the LE board visitors may have additional suggestions.

Indigo- Absolutely not.., no.., never!  The oncology nurses do not have any secrets nor do they UNDERSTAND lymphedema or how it can come on.  I'm an OT (thanks for the kudos to yours Stacie!) and formerly practiced LE therapy  -trust me when I tell you there is a large gap in education and support for lymphedema!  It has gotten much better but still a long way to go!  We must continue to spread the word and advocate for ourselves!  Don't give in because you (anyone) may be a "hard stick" for the nurse!  

velutha

Stacie and Indigo:  Yes!  Steroids make you crave carbs, they can also give you acne, which I find annoying.  They cause heartburn too.

 Ladybug, and a reiteration of my previous antinausea spiel, sorry!: 

My MO doesn't prescribe any "round the clock" anti-emetic other than the emend and of course steroids.  I had zofran, ativan, and compazine as needed, took meds when I felt a little sick.  If I was planning on being at home, I took the compazine (made me woozy).  If I wanted to be more "with it" mentally I took zofran.  When I was desperate, I took the ativan (I don't like benzos).  If you feel nauseous, I would continue taking the zofran and add on something else.  If you are nauseous/vomiting on two different anti-nausea meds, I would 1) rest more, 2) consider whether diet/constipation/heartburn are part of the problem, 3) call your MO during office hours. 

If you don't feel nauseated, you don't need to take anything.  All of these drugs have a pretty quick onset, you won't have to wait long for them to work.  However, if you're going somewhere, or know you're likely to be set off by smells, etc,  popping a zofran under your tongue ahead of time helps.   

I'm personally not convinced adding zofran to emend does anything.  They are members of the same class of drug (5HT3 receptor antagonists).  But whatever potion mix works for you.

 Other tricks:  the well-loved lemonheads, or just smelling a slice of lemon or ginger.  I LOVE ginger candy.  Also something cold, like popsicles, can head off nausea (that's why they give those to kids in the ER as a food trial when they've been vomiting).  But watch out -just thinking about ice chips made me sick by my 4th a/c because I associated them with the taste of a/c.     

Most important, don't suffer with SEs!  Call your MO! 

IndigoMont11

Thanks, C-squared - yep, didn't fool me with the "we can stick you" comment.  I didn't even bother to ask her what she meant - just going to avoid the whole situation. 

Velutha - my DH loves Chinese (I think they're Chinese) ginger candy - is that what you eat?  They're little individually wrapped things.  Even though I didn't have big trouble with nausea the first time around, I sucked so many Lemonheads during my infusion that now the thought of them just sounds icky... I've never eaten those candies but I know he'll share!  

rachel11

Hi everyone,

Had a partial mastectomy on March 20 and I will be starting chemo on Thursday. I am a little freaked out about the PICC line (port) and afraid of the unknown that is ahead of me.

dancetrancer

Stacie, I had major carb cravings, too.  I didn't care - just ate whatever my stomach could take and my appetite wanted.

ladybug - I took Zofran every 6 hours for the first 4 days, then tried to wean myself, and ended up with severe indigestion/burping.  Doc told me to go back on Zofran round the clock until day 9 or 10.  It seemed like way longer than others, but that's what he wanted me to do.  He switched up my other meds, and I felt much better.  I never once had severe nausea to the point of vomiting.  The Zofran may not be strong enough for you/or the best medicine if you are vomiting (IMO).  You could ask to try an alternative - Compazine I think is one, there is a Sancuso (?) patch, etc., etc.  P.S.  my regimen is TCH as well.   The Carboplatin is known for significant nausea/GI issues. 

re: lymphedema risks and surgery...I too had a tech take my BP in my node side as I was coming out of my mastectomy surgery (in post-op, when I was out of it).  Ever since then I have written in bold magic marker on my left arm "NO BP/NO IV" prior to every surgery.   It's effective, at least so far!   

dancetrancer

P.S. ladybug...ask if you are getting Emend in your IV.  It acts differently than Zofran/etc. class of drugs.  I get both Emend and Aloxi (similar to zofran) in my IV.  The emend offers 5 days of antinausea protection...it is expensive but well worth it, IMO.   

lsharvey822

Petagae - when I went in for my port the surgicenter asked me and then put a bright orange wristband on that side that said NO anything.

ladybug1

Thank you Ladies.  I am going to try to not take the zofran and see how it goes.  I will just try to take it right if I notice that feeling coming on.  

Thank you for all the advice.  

IndigoMont11

Well, frack! For the last couple of days I've felt like something was in my eye, but couldn't see anything like a eyelash and I haven't worn makeup since Friday, or my contacts in at least 3 weeks. I was able to take a good look this evening and there is a tiny bubble or crystal right on the surface of my eye. I googled it and read that it is a conjunctival cyst (probably) and they are caused by an accumulation of tear products.



I don't remember ever having one of these before, and think it probably has something to do with the major eye dryness I've had. Supposedly they usually go away on their own, and if they don't, an ophthalmologist can zap it with a laser.



Has any of you had anything like that with the dry eye? I think I'm going to ask about some kind of precription drops tomorrow. Hopefully won't need the laser!

anndh

Rachel11, I start tomorrow afternoon (Tues).  I don't have a port.  Wish me luck!

Raelan

Hi Ladies - Looks like I'll be joining you starting this Thursday.  I'll be doing 6X of TC.  Got my port in last Friday and it's not too bad. Still a little sore, but it will definitely be worth it in the long run. Went to the store today and stocked up on a bunch of OTC drugs to help with potential side effects; constipation, diarrhea, dry eyes, dry mouth, heartburn.  Figured if I bought the stuff, then I won't need it....right?  Wishful thinking, I know.  The "sticky" tips were great in this respect.  I also have my wig already picked out, but just need a second opinion from my sister on it.  She'll be going with me this weekend to make the final decision.  Also bought a couple of turbans and scarves from the TLC site this weekend, so I think I'm as prepared as I'm going to be.  Really hoping for minimal side effects.

The advice from this board has been great, and although I'm sorry we had to meet this way, I'm glad there are some others I can cyber chat with to help me along in this process.            

FightingLikeAGirl

Chrissera...they told me my Friday appointment was hydration with Neulasta.



Dance. ..thanks for the info on the TCH thread...I will for sure check that out.



Ladybug...I totally get where you are coming from wanting to stay on the nausea meds 24/7...I was going to ask the same question. I'm so worried about it.. .its really what scares me the most.



So tomorrow is the port...actually not that worried about it...mostly worried about 1st chemo treatment Thursday and the Neulasta Friday . Anyone have trouble with the Neulasta?



Wishing everyone easy SEs!







Wishing everyone easy sEs

FightingLikeAGirl

Melrose. ..thanks for all the great suggestions...have you cooked from the chemo cookbook yet?

FightingLikeAGirl

Raelan...looks like we are both starting Thursday...I'm also having TC mine includes Herceptin. Are you nervous? I am! Looks like you have things pretty well organized.

Have you heard of Look Good Feel Better? Its supposed to be a great free class given by the American Cancer Society...they teach you how to apply makeup, put on eyebrows and eyelashes, put on head scarves and your wig...apparently they give some nice free makeup too. I signed up for one in my area in a couple of weeks...really looking forward to it. When I was on the ph with the girl from ACS she also mentioned they have a free wig service. I'm going Wednesday with my mom and sister to pick out a wig...hope I find one I like!

Sending lots of hugs your way and lots of hugs to everyone with wishes for very few SEs .

FightingLikeAGirl

Raelan...looks like we are both starting Thursday...I'm also having TC mine includes Herceptin. Are you nervous? I am! Looks like you have things pretty well organized.

Have you heard of Look Good Feel Better? Its supposed to be a great free class given by the American Cancer Society...they teach you how to apply makeup, put on eyebrows and eyelashes, put on head scarves and your wig...apparently they give some nice free makeup too. I signed up for one in my area in a couple of weeks...really looking forward to it. When I was on the ph with the girl from ACS she also mentioned they have a free wig service. I'm going Wednesday with my mom and sister to pick out a wig...hope I find one I like!

Sending lots of hugs your way and lots of hugs to everyone with wishes for very few SEs .

nfranklin

Still up after 4th Taxol treatment 2:48 am. When I got home at 3:30 pm, I was so tired I laid down and went to sleep, got up at 6 pm,, probably the reason I am still up. Was up last night really late with a headache.



Lots of hot flashes, and tired, SE's. Got up and started eating, ate too much, but no nausea.



Anyone have their lymph nodes out? Are you having any problems with that arm?



Sade I am sorry you are having such awful SE's, you are in my prayers. {{{{HUGS}}}} to you.



I am praying that everyone hear have fewer SE's, and that we all have the strength to endure them.

Stacie

Nfranklin- i had the ALND 13 nodes removed i had lots of trouble with that arm. It is much worse than the less invasive SLNB surgery. I felt mamed for life. Now at 8 weeks I have my full range of motion back and the numbness is getting better. I couldn't swing my arm without it feeling so awful i had to stop. My arm rubbing against my body skin to skin was awful. Today I can swing it natural, feels better w a sleeve than sleeveless. It sitll bothers but doable. Hoping for more improvement. How much numbness is permanant is different for each of us. My scar is big but looks ok. Bought two stunning short-sleeved summer dresses at Dillards that looked fab with my new bald look. Earrings to match.

Melrosemelrose

FightingLikeAGirl- I haven't cooked from the cookbook yet.  I liked reading the recipe ingredients so I could see how I can keep my homecooked meals simple plus I just get ideas as to what to eat.  I'm eating 5-6 meals a day so eating is kind of boring to me.    I found this cranberry pecan oatmeal recipe on the Livedstrong,com website that has minimal butter (2 tbsp) that I'm planning to mix up today.  The cookbook helps since it gives tells you what side effects can occur, how to deal with them and what to eat when you are experiencing the side effect.  It's a no brainer for me so I don't have to turn to Dr. google to figure it out.  I will tell you that I've been able to not take any OTC meds for constipation by eating/drinking certain foods.   

As for the Neulasta- I didn't get a shot after my chemo treatment.  But.... here is what I've read on the threads--- It is suggested to take Claritin the day before, the day of and for several more days after you receive the Neulasta shot.  It is supposed to help with the bone pain.  Others on this thread can tell you what they did after their Neulasta shot better than I.

If you having 6 rounds of Taxotere/ Cytoxan plus Herceptin every three weeks (with the Herceptin every 3 weeks for the remainder of a year after chemo completed)-   If it is okay with your onco, ice your nails (toes & fingers) during the Taxotere infusion to help save your nails.  You ice for 15 minutes before the infusion and at least 15 minutes after the infusion.   I ate/sucked on ice during the Taxotere infusion to help prevent mouth sores.  Make sure you wear something warm/ have a blanket during that infusion b/c the icing will make you cold!!!  I wore some fleece warm up pants over my leggings to help keep my legs warm and wore a long sleeve pull over shirt to keep my arms warm.  You can get up and walk around with your IV pole for the rest of the infusions (Cytozan & Herceptin if you are receiving Herceptin)  The first Herceptin infusion is run over a 90 minute period for the first infusion only so the nurses can watch for side effects.  After that, the infusion is run 30-60 minutes.  I also packed some snacks to eat at my first treatment since I wasn't sure when I would be finished ( cheese sticks, crackers, individually packed peanut butter, apple sauce).  I ate part of a turkey sandwich at some point b/c it was lunch time.  I drank water throughout my infusion and got up to go whenever I needed to.  Drink, drink  drink that water so you can flush that chemo out. 

Look Good Feel Good ACS Program- I wanted to attend the program where I'm being treated but the dates always fall right after my chemo treatments.  At my first treatment, the ACS volunteer came by and asked me to come with her (with IV pole in tow) to her office.  I got a make up kit and a free wig (which I wasn't expecting).  I thought I was just going to try on wigs but not really get one.  This private session helped me keep busy during the Herceptin infusion. 

Stacie- I bet you had fun shopping at Dillard's!!! It's one of my favorite places to shop!!!!

Everyone --- have a wonderful day with minimal SE's.  HUGS!!!!

wildflower2828

Hello all,

     So I go for my port implant on Thursday, May 3rd, then I start my first round of chemo on May 8th, and boy let me tell you I am so scared.  I am having a lot of aniexty issues lately, just being so scared of what to expect, it is the not knowing, is what is scaring me.  If anyone can help me, by telling me some of their side effects, (I know everyone's is different but having an idea of all the different ones will help me), I would greatly appreciate it.  I am just afraid of dying from chemo.  Please if anyone can help me.  I don't know what to expect with the port, or the chemo.  I hope everyone else is having good results with their journey.

Kristy

Melrosemelrose

Wildflower2828 - Take some deep calming breaths.  If you have questions about your chemo and port, make a list and call your onco to talk about those to help relieve your fears.  This website is great resource of info for phases of treatment including the port placement and what to expect with chemotherapy.  I know we forget it's there but it is and very helpful.  What chemo combination are you having?  It will help the other gals with the same cocktail, respond to you.  Please private message me if you want.!!!!  Happy to help you and give you whatever support I can give you!!!! HUGS!!!!

Stacie

round #2; day 8; AC+T I have had some SE's worse than round #1, i.e. nausea and fatigue but others are better i.e. constipation cleared quicker; and others I had the 1st time I did not have this time i.e. bone pain and scattered nerve pain.

 But nothing so far is not manageable.  But I work at home so I might no think that if I were going into and office daily.

s.

LisaG65

1 week post #2 TCH had blood count today and recieved a neupogen shot, will have shots the rest of the week. this week was a bit harder than first round. one day of C 2 days after, then D for a cpiple days. thought i was over it and last night D came back, had 2 doses of immodium and seem okay. emotionally i feel like this is killing me, my pesonality, the light and soul of me.  its just a moment and it will pass. i cycle with the moon which is full this saturday, and will be the biggest full moon of the year. i have had 3 or 4 periods since starting chemo. i have an iud and dont have a normal period. and rarely have them so this is new, very light periods. i know its just pms making me moody, but i actually cried talking to the nurse when i was getting my blood, it felt good to let it out, and it not be in front of my son or man. been tried and have been resting pretty much non stop.

 i was wrapping a package with packing tape and went to rip it with my teeth, and part of the tape caught hold just under my chin when i pulled it off it took my skin with it, so now i have this round abrasion under my chin. so becareful. skin is extra tender, this was like an i love lucy episode, it was okay last night but this morning looks like like i skinned my knee only under my chin, really cute

petagae

Thanks ladies for all tips reguarding IV's and BP. I did end up with IV in my hand and had to do 1 BP in my arm. Unfortunatly my leg BP is always WAYYY off base so we had to do an arm BP for comparison. the leg was 40 points higher than my arm today. But everything went ok and i'm back home resting.We did use the arm which only 1 node was taken out of in order to minimize the risk. I dont have any pain in he port and am interested to see the incision and my arm tomorrow when they take the dressing off for chemo.

Stacie

Lisa I dig your profile shot. I am famous on fb for shots of ny feet having fun.



ALL- test question. Does anyone know who my Avatar pic is?

Melrosemelrose

ok... no idea..... I failed this test!!! lol

IndigoMont11

It looks like a pokemon!

SadeSurvivor25

Hello ladies, has anyone had any problems with phlegm??? Since my second round of AC last Thursday I've been having that problem. It keeps building up in the back of my throat causing me to gag. It's clear when I can cough it out so I'm guessing there isn't an infection and muscinex (sp?) doesn't seem to be helping. Any suggestions???

Melrosemelrose

Sade- yep and have a different chemo cocktail than you!!! I just cough it up and get rid of it.  I'm kind of used to it since I've had allergies/bronchitis since the end of February.  The allergies/bronchitis is so much better but the mucuous stuff is still here.  I don't know if it is a chemo side effect but it is tolerable. 

SadeSurvivor25

Melrose, it is tolerable but gagging and nausea don't seem to mix well. I'm constantly feeling the urge to vomit. I'm glad your allergies/bronchitis is better!!!

chapter4

Had AC treatment number 2 on Wednesday....today was the first day back to work....got tired by the afternoon...feel a lot better then Sunday and Monday....anyone else feeling better? It's the climb back up to some normalcy for a few days.