February 2014 Starting Chemo Club

Melrosemelrose

tangandchris- Good luck and easy times today with your first infusion.  Don't worry if you didn't get the Zofran taken last night.  Just tell the infusion nurses that you didn't take any and your onco may order it to be added into your pre-chemo IV cocktail.  Hope to hear from you later.....

lago

Sicilian the first Nuelasta is the worst. I couldn't take Claritin because my onc already had em on Zyrtec. I mean I couldn't even stand up straight I had so much pain in my back the first time. After that not nearly as bad. I bit sore but totally functional. Sounds like your current hair cut is like mine. Yup I kept mine short. And your degrees to Kevin Bacon just got shorter

Siniberry There are many ways to pay-it-forward once you are through with this crap. It could be posting here, being and Imerman Angel or Reach to Recovery volunteer, participate in research studies or just raise money for research (so many good charities to choose from) or donate to this site.

h0pe

Lago - you are paying it forward with all your posts. Thank you! We all appreciate you sharing your experience and seriously, no one understands unless you have gone through this crap yourself! Good luck Tangandchris. Hope you have mild to no SE's!

Macintx

So, if I am already on Clarinex for allergies (same family as Claritin) I won't get anything else for the Neulasta shot? What exactly is the Claritin supposed to do anyway?  I have my chemo class tomorrow and get all my prescriptions, so I'm sure I can ask then, but I'm just wondering now that it's been mentioned.

Cici566

I am on day 3 after my first round and feeling pretty good so far.  My nausea has totally been under control.  I have been eating really small meals all day long and I havent even noticed my stomach.  I am wondering if chemo is accumulative and will be different next time.  My insurance wouldn't approve the neulasta so I will start 7 days of self injected neupigen today. Yuck.  Not looking forward to that.  I am going to do some chores this morning and then go to a gentle yoga class.  It will be my first yoga class since my masectomy a month ago.  I can't wait! 

Great story about Kevin Bacon, Scilian!  What a bright spot in your day.  How is everyone else feeling?

Melrosemelrose

The Claritin is used to try to prevent any bone pain that one may experience after receiving a Neulasta shot.  The Neulasta shot is a white blood cell count booster that is is adminsitered at least 24 hours after one's chemo infusion.  There is a on going clinical trial investigating whether the Claritin does help prevent the pain.  Here is the link to that clinical trial ... http://clinicaltrials.gov/ct2/show/NCT01311336?term=claritin&rank=3.  According to the clinical trial protocal, one takes one regular 24 hours Claritin ( NOT Claritin D) for 7 days beginning the day that one receives the Neulasta.  With my onco's approval, i took the Claritin for 8-9 days and did not experience any bone pain related to the Neulasta shot. However, one can still experience muscle aches/joint pain from the chemo regimen.

As for Neulasta shot, it is an expensive shot that not all insurance companies will initially cover.  If you do receive the Neulasta shot, you may want to receive it in your tummy area.  I had my Neulasta shots administered in my tummy since there is a little more body fat there and because I didn't want a sore arm.  Since the shot is refrigerated, the administering nurse may ask you to hold the shot in your hand to warm it up.  Ask her to slowly administer the shot rather than a quick push since it may sting less.  You will wait about 20-30 minutes to see if there is any reaction.  The alternative to the one time Neulasta shot is a series of Neupogen shots which are given daily and can be self administered.  Neupogen is much cheaper than the Neulasta shot.

Hope this helps.....

lago

Cici566 the SE are cumulative but don't seem to get as bad as the first in some ways because you know what's coming so you pre-treat. I know I had terrible constipation the 1st round but the next 5 I did metamucil right away and never had the issue again. Same with heartburn. I was on meds all the other rounds. Granted some things the don't have meds for (nueropathy, stiffness, taste changes, watery eyes etc.) but again that really wasn't an issue till the last few treatments. Depending on your chemo or you you might not even get any of those. I know a gal on the same treatment as me (same team) only got hair loss and some taste change at the end.

formydaughter

Yep, ladies, you were right.  It was an allergic rxn to the Taxotere they think (though they are not ruling out the Perjeta).  We won't switch chemo agents but they will double the premed steroid for next round.  I've been down last night and today, hoping that this is the worst.  Severe stomach cramping, nausea, dizzy, shaky and a really low temp (93-95), jaw pain, headache.  My taste and smell is off.  I did not realize that this was going to be so hard.  I can't even imagine going to yoga right now...go Cici566!  I sent my daughter overnight to a friend's house tonight - unheard of for me to allow a sleepover on a school night, but it is what it is.

NJmom3 - I had the same electric chair thought!  I think that knowing what to expect will make the next time better, except for not wanting to feel this way again.

Tangandchris - I hope that you are sailing through.

tangandchris

Hello ladies...checking in real quick. Just got home from my first treatment and I'm relaxing. I felt a little queasy on way home, so I took one of my meds. Onco nurse said I'll probably not really feel any SE's until later this weekend....how long did it take for ya'll to notice SE's?

 

Gardengirl66

hello, took a few days break from the site,and trying to catch up with everyone sorry to see more ladies joining the February group....but I feel  I have the best company to be with. Feb. 7 was my first round, felt fine for the first 24 hours, then started to feel like I was coming down with something.  Had the neulasta shot on sat,in the belly. That feeling has stayed the whole time, just easily tired, aches come and go.....resting on the couch a lot ! I have had no nausea (so far), stomach a little on settled feeling, heartburn a little and of course not much tastes good. My kids on the other hand... My youngest sick day before chemo,throwing up, my oldest sick the day after,throwing up and a DH, also sick (all viral ) ....all recovered now ! Then my mum was in emergency with chest pains ...released later to get checked later this week ...small blood clot? Then my youngest (10years old ) on Wed. at 4am woke up crying with chest pains...he had a thorough  check up in emergency and released...stress related ?? 

So all I can say it has been an interesting week ! Not what I was expecting at all. 

Once again , so much thanks to everyone on this site and in this group... Thanks for all the questions we can ask, the joy and sorrow we share... This group really helps me stay grounded and I know I can get through all of this ( bc) . Thanks !

Melrosemelrose

tangandchris--- If you are on Cytoxan/Taxotere, you will probably feel fine today and tomorrow.  Saturday you may begin to feel the slide down.  I had my Cytoxan/Taxotere chemo on Tuesdays; I was fine Wednesday and Thursday.( able to run errands/ drive myself places).  Friday was I need to stay in bed or rest day.  I remember that after my first infusion that I started the downhill slide late Thursday night and felt like I had the flu.  I got up and sat in a rocking chair for a little while and then moved to my desk chair.  I sipped some icy cold ginger ale and stayed sitting until I felt like I was tired enough to go back to bed.  I told my husband not to keep talking to me and that I just really wanted to sit and be left alone and not touched.  He understood.  Friday, I felt a little under the weather and had some minor cramping.  I did call and talk to my research coordinator who said I was okay.  The 5 rounds of chemo seemed a little easier on me.  I never got that cramping again and never felt as bad as that first time.  I would rest on Saturday and Sunday and then Monday, I was back to my normal self again.  Just in time for the nadir period when one needs to be  cautious since that is the period that one's WBC is at its lowest.  Hoping that you have an easy time after this round of chemo.

Sicilian

The SEs are so different for everyone. I do my treatments on Thursdays and find that the SEs don't start until Friday night and last about a week. It was day 8 or 9 before I really felt like myself.

lago, thanks for letting me know about the Neulasta. I was dreading next week, but my bloodwork was so good after my first treatment that my onco did not want to discontinue it.

I really don't want to get a wig, but my insurance will pay for one. I was thinking of getting a halo hairpiece instead. My scalp is really sore, so I can't imagine putting a wig on. However, my insurance will only pay for a wig at certain places. The one place where they will pay is so expensive, and they got horrible reviews on Yelp that I'm afraid to go there!

maltomlin

Hi

I hope I'm not butting in........I was dx 6 years ago but remember those times as if it was yesterday.

I loved my wig.......I got one that was a completely different style.......and I've kept that style after my hair grew back. It let me 'blend into the background' and appear normal. I had so many people ask me where I'd had my highlights done........

As for side effects from chemo?,,,,,,,,,,,, everyone is different.......I had my first chemo on Friday and the following Sunday I thought maybe they'd given me the wrong drugs........I felt fine....but then Monday?? Everyone is different. Some experience all the effects and some hardly feel any.

But chemo is short-lived and you'll soon be out the other side.......just don't expect to be back to normal straightaway....it takes a while.

But you will be back to your previous life before you know it.

lago

formydaughter hopefully they will get the right amount of pre-meds in your so you won't have such a tough time next time. Some people need more some less.

tangandchris it was a long day. Take it easy. BTW what cocktail did you get?

Sicilian if you can handle the nuelasta it is worth it. I never got sick on chemo. I even ate sushi once (my onc said I could). But of course after chemo the neulasta stopped. 3 months later I got shingles! It takes a while for our systems to recover. My white counts were still a little low 7 months PFC but my PCP said that is to be expected due to treatment. (I was still doing Herceptin but not sure if that effected it.) So with those kids getting sick I would really try to do it or ask about the other shot that is given daily for a week.

Lettinggo

Hi Ladies,

Thank you for sharing all your brave and funny stories.  I started chemo on 01/23 and have  a dose dense schedule of AC every 2 weeks for 4 cycles and then 12 weeks of Taxol and Carboplatin - same as NJMOM3's regimen.    My bc is triple negative and quite aggressive so the doctors decided to have me go through chemo first before surgery.  Agree that 3rd, 4th, 5th day is the worst.  But overall still depressing time as you do not feel like doing much.   Thanks for the good cheer you ladies present here!  I also have a relationship issue where my ex boyfriend decided to not offer any support or even talk to me any more as a friend all because i asked him to respect my wishes not to go around town and tell other people about my illness.   We were on and off but i sort of relied on his emotional help but now he is completely cutting it off and causing me a lot of emotional pain and suffering.  Wondering what thoughts you ladies may have to help me and how you strong ladies would have handled this situation.   He has threatened to call the police if i call him again.  i know i need to let it go, but when i am down and alone and feeling so fatigued like this, it is hard.   I keep praying the serenity prayer for the Lord to help me let go.  i will probably go for bilateral masectomy in June.  Thank you all very much!!!  Keep the good spirit up!

Lettinggo

 A real quick note and question, ladies.  Yes, constipation is one of my biggest symptoms too.  Doctor recommended Miralax and Senokot-S.  but the worst part is it irritated my old hemorrhoids, any suggestions ladies on what is effective for that? Thank you all and take good care of yourselves!

lago

Lettinggo your are doing "AC every 2 weeks for 4 cycles and then 12 weeks of Taxol and Carboplatin" and you don't think you're doing much! Trust me you are doing the tough stuff first. Triple negative is a fast growing chemo (as you know). Chemo does really well with fast growing cells! What's nice is you will be able to see that that chemo worked once you had surgery. I have no idea if it did with me since I did surgery first. Granted I'm still here and NED so I assume surgery or chemo or both did it's job.

Relationship issues. Yeah I've seen it all on this forum. Partners either step up, ship out or just don't know what to do. The ones that ship out are best to be out of your life. Doesn't feel that way now but if he is that cold when you are facing this do you really want that kind of person in your life! I highly recommend you contact Imerman Angel's or Reach to Recovery (ACS) They should be able to match you with someone around your same age that might have gone through a similar issue. Seriously I've seen partner's leave after years of being married. I know it hurts now but in the future you'll be happy you didn't waste anymore time with this loser.

Melrosemelrose

Lettinggo- I can relate to the constipation issue.  The Zofran I was taking put me on the C train.  Once I figured out it was the Zofran, I ate more high bulk foods ( oatmeal, veggies), kept drinking fluids, drank some prune juice mixed with apple juice and ate one or two of those SunSweet Ones individually wrapped prunes with each meal.  Those prunes are sweet and moist and those seemed to help.  If you eat more high builk foods, you have to remember to keep your fluid intake up.  the other thing I can suggest is this book that I used while in chemo land.... Eating Well Through Cancer by Holly Clegg and Gerald Miletello, MD..  That book has foods lists, menus, tips and is divided into chapters about what to eat if you have certain side effects ( ie diarrhea, constipation, mouth sores, etc.)  It was very helpful to me since it took the guess work and me having to research and figure out to eat and what to do if I had certain side effects.  You can check this book out on Amazon.

kjiberty

Formydaughter:  I, too, had a reaction to the T/C the second the third infusion.  Caught it quickly with the third one, though. They slowed down the dosage and gave me more steroids and flushed everything out w/saline.  It was pretty scary, but the figured it out, thank God!

Cici566

Sicilian I bought a wig and I am not sure if it is covered yet by insurance, I am going to try to get it covered.  After I bought I found out through our local look good feel better program that there is a wig bank in our county where you can get a free wig.  It is at a local salon.  Once you pick one out they will style it for you.  I took my wig in and the stylist cut it and styled it for my for free.  I was not loving it when I bought it but now it looks cute.  I am taking it for a test run tommorrow to see how I feel in it.  So call the American Cancer Society to contact your local chapter. 

Lettinggo  I am sorry to hear that you are having problems with an ex boyfriend during this time.  I just started the same protocol as you.  It feels like a long journey.  I had surgery a month ago and I was just starting to feel normal when I had to have my first round of chemo.  So far I still good though.  I had to give myself my first shot of neupigen today and it wasnt as bad as I thought.  It looks like Lago had a couple of really good suggestions for you to look into.   What about asking your oncologist about seeing a social worker while you are going through this.  Do you have some good friends that you can share with.  I have found that the more I share with people it becomes easier.  I am learning for example that my husband can't handle it when I break down.  I have my break downs with my friends who can listen.  My husband is better at taking care of my  needs and cuddling.  I am also finding that most people really want to help in anyway they can.  I am learning to open up and letting people do things for me so I can take care of myself and my children.  When this is all done I will be able to give back to them.  You are doing great! 

Gardengirl hang in there.  What a way to start!  Hope you can get some rest and no sickness in your house.

formydaughter I hope they get your pre meds right next time.  Hope you are feeling more settled.

princessrn

Good evening ladies....

Sicilian   It took me while and I like to say that I "got new hair".  Short, medium and long lengths!  I have to thank my mom, she bought my hair.  Also I was really lucky the wig shop near me, two sisters run it, super cool!  They were the best.  And they turned me on to a special thing in my county where if you have breast cancer, you get a rebate from a local group, 150$.  So that was terrific.  I am having fun with it and I wear different hair so know one knows what to expect and I can control it!

Though, did I mention that I was in the grocery store two days after I cut my hair.  I had my wig on and it is super cute and the check out lady says, " oh your hair cut is just great!"  I said thank you and burst out in tears as I handed over my debit card  for shit sake!  But I can laugh about it now, poor thing, she felt so bad!  Aww geez already

Lago  I ran on the treadmill today.  First time since my surgery.  I did fine and after I was stretching my arm up, the one with the cording. I reached up with my other and was pressing against it to stop the pulling and a cord popped!  EWWW  I could hear and feel it.  Kinda creepy is all I'm sayin'!!!!

And to you sweet, brave women who had their first doses... You inspire others by your words, your honesty and your willingness to share your fears and victories.  Each day we are one day further away from the start and one day closer to the end.

Brwneyedgirl

I had my first chemo on a Friday. Saturday until Sunday bed time I was great.  Felt achy Monday and Tuesday. Then progressively better each day after.  I did not get the neulasta so far.  I guess we will see when I get my labs done next week.  I have been able to work the entire time.  I hope I am able to continue to do so.  It helps me focus on other things.  

tangandchris

Good morning ladies-

Well, last night was a rough night. I don't want to scare anyone who has yet to start...but it was rought. I had my first chemo yesterday and started feeling queasy on the way home. Took my Promethazine when I got home and just took it easy. I slept for awhile, woke up feeling queasy, took another pill. I ate a half a sandwich and came and sat on the couch with DH. I started to feel progressively worse, this time like I was going to vomit and, the feeling like if I move I'm gonna puke. I told him to call the doctor, he did and she called in Phenergan. I took that when he got home and then my stomach started cramping something terrible.

I ended up and down all night with stomach cramps. I'm feeling a little better right now, just had some cereal and getting ready to go back up there for my neulesta. MO told dh that this wasn't really normal for me to feeling SE's already.

Also, I'm confused about the Phenergran, both bottles say Promethazine and when I googled Phenergran it had Promethazine in quotations next to it. I guess its the same drug and the MO screwed up??? 

sahars

hello ladies,

Had my first chemo yesterday, going in for the shot today,I'm getting 4 biweekly AC then 12 weekly Taxol. I don't know how I'll be able to go through all of this, I had nausea and vomiting all night even though I had heavy duty anti nausea drugs. I'm hoping my mo  will figure something out, I have faith in him even though he looks like he just about turned 12   I think most docs look too young and I'm only 48! My 16 year old daughter died the tips of her hair pink for me,that made me feel much better! Hang in there everybody,we gotta beat this thing!

lago

Nausea drugs. If the meds your onc is giving you aren't working ask them for a different drug. There are many out there but the don't prescribe the expensive ones first. Occasionally there is someone that can't find a drug to work but that isn't the norm. Also be sure to have something in your stomach. Small meals. Don't go to chemo with an empty stomach. This can actually make the nausea worse.

tangandchris it unusual for SE to happen so fast but hey there's always a first. Granted with all the stress etc. or maybe something else. Make sure you don't have some kind of stomach bug. Hospitals are great places to catch that crap.

dancetrancer

Tangandchris and sahars - are you getting Emend in your cocktail of infusions before chemo?  It is the "cadillac" of antinausea drugs.  Expensive but has been shown to very effective in most cases.  I got that and Aloxi in my premed infusion to prevent nausea.  I also took Zofran as soon as I was allowed to after I got home to prevent nausea.  I took it even though I didn't have symptoms for several days post chemo - I was told by my onc it is easier to prevent nausea than to control it once it starts.  Most are able to have nausea controlled - if you find the right drug mix.  I am so sorry you both were so sick.  Hope you both are feeling better soon!  

Brwneyedgirl

I too took all of the meds even if I was not feeling bad.  They gave me a couple of anti-nausea medications.  One I took every 8 hours around the clock for 4-5 days after the chemo and the second to combat breakthrough nausea.  They seemed to work for me.  I hope you find something that works for you.  My MO said to call if the drugs were not working. 

h0pe

I had my first AC dd infusion today too. Been feeling a little out of it and tired. I can't tell if I have a mild headache or if it's mild nausea?! Emend was in my pre-chemo cocktail, but I think I will still take a compazine tonight. MO told me I can be on Prilosec, or any other OTC PPI to help with the acid reflux. People usually take it for the entire 5 months they do chemo, daily. Will let you all know if any odd symptoms pop up. 

tangandchris

I am unsure of what they put in my cocktail for anti-naseau, I know they told me but I don't remember. My naseau feels more under control now, but I feel so out of it. I will start my Zofran tomorrow morning and keep taking it too. My stomach cramps were awful though, I feel it coming on a little right now too. I got my nuelesta shot and iron infusion today.

dancetrancer

tangandchris, I too had extremely painful stomach cramps - the kind that made me sit down, close my eyes, breathe shallowly, and almost cry.  I felt much better once my onc told me to start taking magnesium...but PLEASE, anyone who reads this - check with your onc if this might be the solution for you.   It may or may not be.  But it is something to ask about.

Oh and BTW, I always felt a little flu-like (slightly tired, achey joints) the day after my iron infusion.  Not horrible, by any stretch of the imagination, but since you did it right after chemo you might feel a bit more wiped out tomorrow - plan to rest if you haven't already.